Barriers for Families Needing Palliative Care in Rural Communities: A Call for Resources and Policy Change
Kristen Abbott-Anderson1, Ellen Vorbeck2, Meritxell Mondejar-Pont3
1University of Wisconsin-Eau Claire, Eau Claire, Wisconsin, USA. 2Minnesota State University, Mankato, Mankato, Minnesota, USA. 3Universitat de Vic – Universitat Central de Catalunya, Vic, Catalunyia, Spain
Abstract
Purpose: Rural populations are aging and experience multiple chronic conditions for which there are limited community resources for individuals and the families caring for them. Palliative care services have demonstrated cost savings and improved quality of life; however, these services have largely been accessible only to urban populations. Since 2006 palliative care services have increased by 50% in urban areas but have not grown similarly in rural settings, placing families at risk for poor health outcomes and decreased quality of life. We explored the state of health in rural southern Minnesota first by identifying what comprised a robust integrated palliative care service and second, by exploring what the status of palliative services are in these communities. Methods: Replicating a study in a rural area of northeast Spain, a qualitative case study utilizing deductive analysis was undertaken to investigate palliative care services in rural southern Minnesota. Semi-structured interviews were conducted with palliative and hospice healthcare providers serving these rural communities. Findings: Due to lack of funding and resources, many palliative care services in rural communities were associated with hospice agencies. This connection may create a barrier for individuals and families seeking palliative care. The stigma around hospice care persists, leading to the misconception that palliative services are only for those at the end of life. Conclusions: Nursing and healthcare professionals must advocate for funding to support palliative care services in all areas, including rural and underserved regions, to enhance families' quality of life. A Medicare funding model like that for hospice services in the United States could be a viable solution. Education about palliative care, emphasizing chronic condition symptom management utilizing a holistic approach, is essential. Future research should explore patient and family perceptions of palliative care services, while grassroots legislative efforts are needed to advance these services.
Impacts of Parental and School Nurse Involvement on Health-related Quality of Life Improvement Among Children: A Non-randomized Controlled Trial
Sadia Alam Aivey, Md Moshiur Rahman, Michiko Moriyama
Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima, Japan
Abstract
Background and Purpose: Health-related quality of life (HRQoL) among children is influenced by socio-economic and environmental conditions, especially in low-and middle-income countries. They often experience numerous physical and mental health challenges, which adversely affect their overall development and HRQoL. Implementing an educational program involving parents and school nurses may strengthen the children’s family bonds and HRQoL. The study aimed to explore the impacts of parental and school nurse involvement on improving HRQoL among children in Bangladesh. Methods: This study, a non-randomized controlled trial with a pre-and post-test design, was conducted in Bangladesh from September 2021 to September 2022. Primary school children were enrolled based on predefined inclusion criteria and with parental consent. Data were collected using the KIDSCREEN-27 questionnaire and descriptive analysis was performed. Children were allocated into control group (CG) and intervention group (IG). The IG group received an educational intervention delivered by the school nurse. Results: A total of 455 children, 220 and 235 were allocated to CG and IG, respectively. Regarding sociodemographic and household characteristics, most children were aged 7 to 8 years (CG= 42.7%, IG= 45.5%), monthly family income around 20 USD, and poor access to hand washing facilities in both groups (CG= 39.5% and IG= 33.6%). To explore the study’s primary outcome, a t-test compared the difference in HRQoL scores from endline to baseline between CG (mean= 25.12, SD= 21.99) and IG (mean= 26.47, SD= 25.48), which was not statistically significant (p = 0.547). However, the total HRQoL score showed chronological improvement in the IG (psychological well-being, p< 0.001; autonomy and parent relation, p= 0.002) than the CG. Conclusions and Implications: We recommend a collaborative initiative between parents and school nurses through effective and sustainable school health programs to enhance family bonding and improve children's HRQoL.
Fostering Digital Sexual Literacy in Youth Sexual Healthcare: A Family Theory Approach
Beth A. Ammerman, Elizabeth K. Kuzma
University of Michigan, Ann Arbor, Michigan, USA
Abstract
Background and Purpose: Adolescents encounter challenges in sexual development due to exposure to explicit media, like sexting and pornography. Traditional education often overlooks these, leaving youth unprepared. Our goal is to equip family nurses with strategies and tools to support family health in the digital era. Methods: We reviewed evidence on the effects of sexually explicit media on youth and the implications for healthcare providers. Results: Evidence-based recommendations suggest strategies to guide family discussions about digital sexual content using family theory. These include integrating discussions on pornography, sexual media literacy, safe sexting, and consent within a family framework. This approach aims to promote healthy sexual development and family cohesion, offering nurses actionable insights to support youth and family strengths. Conclusion: Family nurses need resources and skills to implement a holistic youth sexual healthcare model. This innovative approach integrates family theory into reimagined healthcare, addressing digital sexual content and its impact on youth and families.
Toward a Framework for Assessing the Impact of International Family Nursing Association- Position Statements (IFNA-PSs)
Diana Arabiat1,2, Norma Krumwiede3,4, Teresa Gutiérrez-Alemán5, Lisa Whitehead2
1The University of Jordan, Amman, Jordan. 2Edith Cowan University, Joondalup, WA, Australia. 3Minnesota State University, Mankato, Minnesota, USA. 4Glen Taylor Nursing Institute for Family and Society, Mankato, Minnesota, USA. 5University College Alberta Giménez-Comillas Pontifical University (CESAG-UP Comillas, Palma de Mallorca, Balearic Islands, Spain
Abstract
Background and Purpose: Measuring and evaluating clinical, social, and educational impact of existing position statements is crucial to aligning the sustainable development strategies of associations. In this sense, the use and dissemination of the five IFNA-PSs has been a determining factor exerting pressure for developing policies and procedures to promote practice and competencies in family nursing. However, the most appropriate way of measuring the impact of existing position statements is subject to debate. Academic metrics using bibliometric analysis to evaluate impact in research aim to represent the dissemination of knowledge or use of IFNA-PSs among scientists rather than the impact of the IFNA-PSs on the wider world. In this study we present a conceptual framework and guidelines for assisting in measuring the comprehensive impact beyond bibliometric measures. Method: Drawing on the experiences of the authors, which were consolidated by the JBI methodology for systematic review, we constructed a framework for evaluating the impact of the IFNA-PSs using the key concepts associated with the existing citation-based metric derived from public repository data. Results: We identified 5 broad categories of impact: informing family nursing knowledge, increase of measurement capacity of family nursing, outcomes that conceptualize IFNA-PSs impact in terms of positive changes when transferred to policies, definitions that interpret IFNA-PSs as a context for developing interventions, engage stakeholders and use of multidisciplinary approach. The challenges associated with measuring the form of impact were difficulties in identification and differentiation of the measures described as an outcome of IFNA-PSs. Many interventional studies are motivated by the IFNA competencies, yet its relevance may only be documented in supplementary materials. Conclusions and Implications: To advance the impact of IFNA-PSs, we need to develop good methodological framework for developing interventions, and place emphasis on developing strategies to improve the dissemination and application of IFNA-PSs using measurable outcomes.
A Risk Assessment Perspective on Abuse and Neglect of Parents of Children with Disabilities: A Literature Review Focusing on the Family Perspective
Akiko Araki, Yukiko Taniguchi
Toho University, Ota-ku, Tokyo, Japan
Abstract
Background and Purpose: The number of child abuse cases in Japan reached a record high of 214,843 in 2022. The fact that a child has a disability of any kind is a risk for the occurrence of inappropriate caregiver responses. According to a 2009 report on the status of family support efforts at child welfare agencies nationwide, children with physical disabilities are 4.3 times more likely to be maltreated, and children with mental disabilities are 13.3 times more likely to be maltreated. However, the childcare environment for children with severe disabilities or medical care needs is often closed off, so it is important for professionals to be aware of the signs and symptoms of abuse risk during visits and at clinics. Objective: To review Japanese literature to confirm the perspective of observable risk assessment for abuse of children with disabilities, including children who require special medical care. Methods: The database was searched using the Central Journal of Medicine "ICHUSHI" (((Child Abuse/TH or Child Abuse/AL) and (Risk/TH or Risk/AL) and Assessment/AL) and (DT=2014:20-24 and excluding conference proceedings)) and Google Scholar. All authors reviewed and analyzed the data, and in cases of disagreement, there was discussion until there was consensus. Results: Sixteen articles were identified. When the assessment perspectives were analyzed separately for child and parent aspects, they included issues related to parental health, behavioral characteristics, and family relationship issues. In the future, it is necessary to develop an assessment list that includes the perspectives of families of children with disabilities. Conclusions and Implications: There is a need to develop an assessment tool for abuse that can be used in home visits and clinics.
Development of a Communication Algorithm for Families with Children Requiring Medical Devices: A Focus Group Study
Sara Lemos1, Luisa Andrade2, Ligia Lima3, Maria do Céu Barbieri-Figueiredo1,4
1Instituto de Ciências Biomédicas Abel Salazar, UP, Porto, Portugal. 2Escola Superior de Enfermagem do Porto, Porto, Portugal. 3Escola Superior de Enfermagem do Porto, Porto, Spain. 4Universidad de Huelva, Huelva, Spain
Abstract
Background and Purpose: Communication with the families of children with chronic conditions who need medical devices is fundamental, but often undervalued. Effective communication is essential not only to reduce parents' anxiety and stress, but also to ensure better understanding of medical recommendations and improve the overall health outcomes of children with complex chronic conditions. This study aimed to develop an algorithm to guide health professionals in the process of communicating with these families. Methods: A qualitative study was carried out using focus group interviews with healthcare professionals and family members. Participants included paediatric nurses, a paediatric doctor and mothers of children requiring medical devices. The interviews explored the main stages of communication regarding the placement of medical devices. The data was analysed using a combination of deductive and inductive qualitative content analysis to inform the design of the communication algorithm. Results: Three focus group sessions were held with a total of 11 participants. The analysis identified the main phases of communication process: preparation for communication, timing of communication, post-communication follow-up and family empowerment. The algorithm developed integrates these phases and provides a structured approach for healthcare providers to support families on an emotional and practical level, ensuring the provision of clear and consistent information. Participants emphasised the need for interdisciplinary planning, gradual dissemination of information and post-communication family support, including practical training and follow-up resources. Conclusions and Implications: The algorithm developed was widely accepted by the participants and was designed to fill gaps in current clinical practice. It is expected to help healthcare professionals provide family-centred care in paediatric settings by improving communication during critical moments such as the placement of medical devices. Future studies should validate the algorithm in clinical practice and evaluate its impact on family well-being and healthcare outcomes.
Families' Experiences of Caring for Technology-dependent Children
Sara Lemos1, Luisa Andrade2, Ligia Lima2, Maria do Céu Barbieri-Figueiredo1,3
1Instituto de Ciências Biomédicas Abel Salazar, UP, Porto, Portugal. 2Escola Superior de Enfermagem do Porto, Porto, Portugal. 3Universidad de Huelva, Huelva, Spain
Abstract
Background and Purpose: The paediatric medical technology-dependent population is a growing subgroup of children with complex chronic conditions. Due to complexity of care, family members spend more time managing tasks such as handling complex medical equipment, administering medications, coordinating care with multiple healthcare professionals, and other activities that need to be combined with responsibilities such as work, home, and family. The purpose of this study is to describe the lived experiences of families with technology-dependent children. Methods: A qualitative study using Giorgi’s phenomenological approach was carried out. Participants were ten parents of children with chronic condition and dependent on medical technology, recruited through purposive sampling from an outpatients’ department of a University Hospital in Northern Portugal. Data were collected using semi-structured interviews. Results: Two major themes: emerged: i) Discovering a new parenthood: parent and caregiver, with two subthemes: i.i) Family reorganization and i.ii) Learning to use a medical device; (ii) Reconciling daily life with the needs of the technology-dependent children, with two subthemes: ii.i) Importance of support systems and ii.ii) Experiencing difficulties. Families experience a variety of difficulties and challenges with handling medical devices, from the starting point of the communication of the need for a device and continuing through the process of learning and providing care. Conclusions and Implications: The journey of parenting a child with complex chronic condition, and technology-dependent, entails substantial changes in family dynamics, as well as sacrifice and adaptation, all of which are supported by family, formal networks, and healthcare professionals. Our findings shed light on the vulnerabilities encountered by these parents and emphasize how nursing care can improve the quality of care for these families. Knowledge and understanding of the lived experiences of families with technology-dependent children may assist healthcare professionals develop intervention programs to improve their quality of life, well-being, and family functioning.
Establishing the Ibero-American Chapter of the International Family Nursing Association: Promoting Collaboration and Knowledge Exchange
Maria do Céu Barbieri-Figueiredo1, Adriana Duarte2, Carla Fernandes3, Cláudia Augusto4, Cristina Alfaro5, Cristina García-Vivar6, Cristina Pestana7, Eda Schwartz8, Fernanda Lise8, Fernanda Silva-Rodrigues8, Florinda Galinha9, Lucila Castanheiro-Nascimento10, Margareth Angelo10, Angélica Marcheti11, Maria do Carmo Gouveia7, Maria Joana Campos3, Maria Luisa Santos7, Marilia Rua12, Myriam Mandetta13, Nuria Larramendi5, Regina Szylit10, Rita Leal12, Sara Lemos14, Sonia Marcon15, Teresa Gutierrez Alemán16
1Universidad de Huelva, Huelva, Spain. 2Universidade de Brasília, Brasília, Brazil. 3Escola Superior de Enfermagem do Porto, Porto, Portugal. 4Universidade do Minho, Braga, Portugal. 5Universidad de Navarra, Pamplona, Spain. 6Universidade Pública de Navarra, Pamplona, Spain. 7Escola Superior de Enfermagem de S. José de Cluny, Funchal, Portugal. 8Universidade de Pelotas, Pelotas, Brazil. 9Escola Superior de Enfermagem de Lisboa, Lisboa, Portugal. 10Universidade de S. Paulo, S. Paulo, Brazil. 11Universidade Federal do Mato Grosso do Sul, Campo Grande, Brazil. 12Universidade de Aveiro, Aveiro, Portugal. 13Universidade Federal de S. Paulo, S. Paulo, Brazil. 14Hospital de S. João, Porto, Portugal. 15Universidade Estadual de Maringá, Maringá, Brazil. 16Universidad Pontificia de Comillas, Palma de Mallorca, Spain
Abstract
Background and Purpose: In accordance with the International Family Nursing Association (IFNA) Strategic Plan 2020-2025, the establishment of the IFNA Ibero-American Chapter of the is a significant step towards improving collaboration and knowledge dissemination in family nursing throughout the Ibero-American region. This chapter seeks to foster collaboration among people from 23 countries in this region. The purpose of this presentation is to describe the chapter's creation, as well as to encourage nurses from other parts of the world to start their own chapters. Methods: The founders of this chapter are IFNA members involved in different Committees and groups. Aware of the low visibility of Family Nursing development in the Ibero-American Region, the initiative to gather representatives from the countries in this region emerged. The creation of the chapter began through personal networking and quickly expanded through a snowball effect. We have two strategic coordinators—one in the Europe and another in South America. Results: The chapter's establishment has already fostered partnerships and garnered interest within the region, with participation from 25 professionals in Portugal, Spain, and Brazil. Regular monthly meetings have been instituted, with large participating. Initial institutional collaborations have been established, facilitating the exchange of experiences, and a collaborative research project has been outlined. These efforts represent the beginning of a movement toward "family nursing without borders." The chapter’s initiatives are expected to increase the visibility of family nursing in the region, promote cultural competence, and support family care. Conclusions and Implications: The Ibero-American Chapter of IFNA provides a platform for advancing family nursing in the region. By encouraging cross-border collaboration and promoting culturally competent care, this initiative will help to improve family health outcomes in the Ibero-American context. Hopefully, the chapter's work will improve family nursing practice and lay groundwork for future research and educational development in the region.
Nursing Ontology: Representation of the Family as a Client in Care
Fernanda Bastos, Inês Cruz, Ernesto Morais, Paulo Parente, Regina Pires, Alice Brito, Carla Fernandes, Fernando Oliveira, Paula Sousa, Rita Fernandes, Júlia Neto, Alexandrina Cardoso, Patricia Gonçalves, Filipe Pereira, Abel Silva, Natalia Machado, Maria Joana Campos
Nursing School of Porto, Porto, Portugal
Abstract
Background and Purpose: The family is a privileged context for providing life and health support to individuals. The systemic approach to the family has conceptually gained increasing prominence. Nursing Ontology proposes a framework where the concepts of the discipline and their relationships are specified, describing a formal representation of nursing knowledge. The aim of this study is to represent nursing knowledge about the family as a client in nursing care through five classes of information items: data, diagnoses, objectives, interventions and outcomes. Methods: This is a qualitative study. Content analysis was conducted on the parameters of the National Nursing Information System (SAPE®), along with a literature review and focus group discussions. Results: The national parameterization revealed limited visibility of the family as a unit of care and the absence of representation of conceptual models that underpin disciplinary knowledge. In the Nursing Ontology, the family process encompasses: Organization of home functioning, residential building functioning, Family preparing for including a family member dependent in self-care, Preparing the family to integrate a family member with a behavioural problem, Family preparing to the arrival of the newborn and family planning. For each domain, five classes of nursing information were specified. Conclusions: This study contributes to the formalization of nursing knowledge in the domain of Family Care with systematic approach, ensures representation of family-centered care, and their specific areas, in Nursing Ontology. This, having the possibility of being in the backend of any Information System, is currently being integrated into both the Public System and several private Health Systems, facilitating interoperability between these two Health Systems.
Ontology-Driven Nursing Practice: Insights from A Case Study In Family Health Nursing
Bruna César-Santos, Fernanda Bastos, Maria Joana Campos
Porto Superior Nursing School, Porto, Portugal
Abstract
Background and Purpose: This study explores an ontology-driven approach to nursing, emphasizing family-centred care during early parenthood. It considers the family as a unit and individual needs, aiming to promote personalized, inclusive care. The study analyses the care plan developed for a nuclear family transitioning to parenthood, focusing on the first three months and the integration of a new family member. Methods: This qualitative case study was conducted during a professional internship in community and family health nursing. The participants were a nuclear family with a young child. Data were collected through consultations at the family health unit, home visits, and interviews. Direct observations and physical exams assessed family dynamics, residential conditions, and individual health needs. The care plan was designed using family- and person-centred frameworks, including the Calgary Family Assessment and Intervention Model (CFAIM) and the Nursing Ontology semantic model. Analyses used the CARE guidelines and qualitative content analysis to examine family interactions and responses to interventions. Results: The care plan highlighted the autonomy of nursing practice by addressing individual health and family dynamics. Interventions aimed to empower parental roles, enhance self-regulation, and foster resilience. The health information system facilitated collaborative decision-making, contributing to holistic, flexible care delivery. Conclusions and Implications: The study highlights the crucial role of community family nurses (CFNs) in supporting families through developmental transitions like parenthood. It shows how CFNs can guide families with anticipatory care and tailored interventions, promoting family functioning and improved outcomes. This approach underscores the importance of evidence-based frameworks in family nursing, enhancing interdisciplinary collaboration and ensuring high-quality care across diverse settings. Holistic approaches that consider family dynamics, cultural sensitivity, and individual needs are vital for fostering well-being during this transformative period.
Experience Of Simulation Training on Communication and Problem Behaviors Via Zoom among Family Caregivers of People Living with Dementia
Jackie Hoi Man Chan1, Helen Yue Lai Chan1, Ken Hok Man Ho2
1Nethersole School of Nursing, Chinese University of Hong Kong, Hong Kong, Hong Kong. 2School of Nursing and Midwifery, La Trobe University, Melbourne, Australia
Abstract
Background and Purpose: Family caregivers report that communication and problem behaviors are the most challenging during caregiving of their loved ones who live with dementia. Yet, they could not attend in-person training for the necessary skills due to intense caregiving. Therefore, a simulation training via Zoom, with simulated patients portrayed as people living with dementia, was delivered to equip them with communication skills and management of problem behaviors. This abstract reported their experience of simulation, which was part of an online psychoeducation program evaluated in a feasibility study. Methods: This was a qualitative descriptive study embedded in a quasi-experimental study, with 60 family caregivers recruited from community centers. Simulation was delivered via Zoom in the intervention group (n=30) and in-person in the control group (n=30). Individual semi-structured interviews were conducted to explore the experience of simulation delivered via Zoom. Content analysis was employed for data analysis. Results: A total of 27 participants in the intervention group, who had attended all four simulation sessions were selected. Four themes emerged: Advantages of online format, active learning, perceived benefits, and implementation challenge. The participants found that the online format saved much travelling and facilitated open discussion of their performance during debriefing. They appreciated that simulation was engaging, and they could listen to and observe other caregivers, reflect on their own approach, and interact with facilitators. They expressed enhanced communication skills and management of problem behaviors, and reduced stress. However, they expressed worries that they might not be able to perform correctly in simulation. Conclusions and Implications: Delivering simulation via Zoom to teach family caregivers communication skills and management of problem behaviors appears positive. Online format may be an alternative to in-person class to engage family caregivers. Discussion on workable solutions is suggested before simulation starts is recommended in future studies.
Family Health among Chinese Population in Greater Bay: Guangdong-Hong Kong
Hoi Yee Elaine Chow 1, Angela Chiu Yin Poon2, Emma Yun-zhi Huang 3, Winsy WingYu Wan1, Hon Ching Yuk1, Anson Chiu Yan Tang1, Yang Liu1, Simon Ching Lam1
1Tung Wah College, Hong Kong. 2Macao Polytechnic University, Macao, China. 3Nutrilite Health Institution, China
Abstract
Background: Family health is a state of positive dynamic interaction between family members which enables members of the family to experience optimal physical, mental, social and spiritual well-being. Family is viewed as the pillar in Chinese families, representing the most important relationships for individuals and the foundation of social organization. Family health serves as a resource for individuals to overcome challenges and life stress. Studies demonstrated that healthy family contributes to individuals’ health and psychological wellbeing, however, there is paucity of research conducted in the Chinese population. It is worth studying family health and its relationship with psychological well-being and hardiness among the Chinese population, especially as Chinese societies prioritize family relationships among all others. Methods: A cross-sectional study was conducted in Guangdong and Hong Kong. Convenience sampling was used to collect a total of 770 questionnaires. The questionnaire included the 10-item Chinese version of a short form Family Health Scale (FHS) to measure family health status, 15-item Chinese version of Dispositional Resilience Scale in traditional Chinese (C-DRS-15) to measure hardiness, 9-item Chinese version of the Patient Health Questionnaire (PHQ-9) to measure psychological well-being and demographic data. Descriptive statistics were used to describe the demographic information, family health, dispositional resilience and patient health. Pearson Correlation Coefficients were utilized to examine associations. Results: The correlation analysis results revealed a statistically significant positive correlation between FHS-SF and PHQ-9 (r=0.252, p<0.001) and a negative correlation between C-DRS-15 and PHQ-9 (r= -0.262, p<0.05). Conclusion: The findings provide evidence that a higher level of psychological hardiness in individuals is associated with better family health while lower psychological well-being is associated with poorer family health. Enhancing individual psychological well-being and psychological hardiness is vital to promote excellent family health.
Ubuntu in Action: Transforming African Paediatric Care Through Family Presence and Belonging
Minette Coetzee
The Harry Crossley Children’s Nursing Development Unit, Cape Town, South Africa
Abstract
Background: The presence of family members and their active involvement in caring for hospitalised children is an established practice in many African paediatric settings. These caring practices are most evident when seen through the lens of a deeply held African ethic of belonging expressed, as Ubuntu. Until recently these aspects of African paediatric nursing practice lacked formal expression or a clear conceptual basis. Distinctive nursing practice innovations are aften rooted in nurses’ grasp of the resources inherent in this deep sense of belonging in families and communities. Applying a scholarship lens of Appreciative Inquiry, these have now been articulated and conceptualised as ‘Care-Through-Family’. These deliberate practices contrast with models of care provision which originate in higher resourced settings including Europe and America. They also not as evident in what are often informal practices in other local African settings which tolerate the presence of mothers or those linked to form and local institutional policies which limit mothers’ presence to varying extents. Methods: A Best Practice Project to build the capacity of children's nurses in Africa to lead measurably excellent nursing care for children and their families provided the opportunity for the wider use of the tool. The project ran for two years in five African countries, at eight hospitals with ten nurse-led clinical teams who provided care to more than 30 000 children and their families in that time. A rigorous evaluation of this two-year project focused on advancing clinical practice with innovative and locally articulated best practices related to family presence. Conclusions and Implications: Key learnings from local clinical leaders include: leading enhanced practices related to families; increased family involvement; and data utilisation and professional culture shifts linked to working together with families using asset- and strengths-based approaches.
Multidisciplinary Certificate Course on Implementing a Trauma-Informed Care Approach
Elizabeth Coleman
Minnesota State University, Mankato, Minnesota, USA
Abstract
Background and Purpose: The project aimed to improve the understanding and implementation of trauma-informed care (TIC) among multidisciplinary health professionals, including nurses, educators, dental care, dietitians, social workers, and speech therapists. Trauma and adverse childhood experiences can have long-term effects on children, clients, and families. The effects may impact behaviors, learning ability, mental health, physical health, epigenetics, and the family cycle. Taking a TIC approach can shift the perspective from "what is wrong with you" to "what happened to you," providing better care and improving health outcomes. The project's main objective was to deepen insight into the principles and practices of TIC, fostering a comprehensive understanding of its potential to bring about meaningful improvements in the well-being of clients and families within diverse professional contexts. Methods: The certificate course was developed from previous research and needs assessment. The curriculum included three 90-minute interactive virtual sessions, including reflection and break-out sessions, to discuss cases and determine interventions related to their discipline. The participants completed pre- and post-training surveys to evaluate the effectiveness of the course. Results: A pre- and post-training survey assessed the participants' knowledge and skills. Feedback from participants indicated improvements in understanding and applying TIC principles; 80% of participants report feeling very confident in their ability to identify signs and symptoms of trauma, 98% improve their capacity to provide a TIC approach, and 46% plan to implement screening for trauma in their practice. Conclusions and Implications: The results emphasize the importance of raising awareness about trauma-informed practices across various professional fields. The insights from this project will help refine the TIC certificate course and develop additional resources and strategies to advance training and education and better meet the needs of clients and families affected by trauma.
A Comparison of Family Demands Described by Caregivers of Children with Down Syndrome and/or a Congenital Heart Condition
Beth Cosgrove1, Marcia Van Riper1, Kathleen Knafl1, Louise Fleming2
1University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. 2University of Virginia, Charlottesville, Virginia, USA
Abstract
Background and Purpose: While many families describe having a child with Down syndrome (DS) as a blessing in disguise, there are both initial and on-going demands that families experience. For example, children with DS often require frequent healthcare visits to manage co-occurring conditions. One health concern facing approximately half of children with DS is a congenital heart condition (CHC). Limited research has been conducted to identify how the presence of CHD may change the demands faced by families. The purpose of this qualitative research study was to identify demands expressed by caregivers of children with DS, children with CHC, or children with both DS and CHC. Methods: Following ethical approval from institutional review board, semi-structured interviews were conducted either in person or via Zoom. The sample included 59 interviews across 3 groups: 16 caregivers of children with DS, 20 caregivers of children with CHC, and 23 caregivers of children with DS and a CHC. A directed content analysis was completed using the Resiliency Model of Family Stress, Adjustment and Adaptation. Findings coded as “family demands” were further analyzed using thematic analysis and compared across groups. Results: A preliminary sample of 7 interviews from each group described demands including health concerns, hospital care, resources, support systems, and future expectations. DS and the DS/CHC caregivers expressed more on-going demands. Requiring surgery for the CHC increased both acute and chronic care needs. The severity of the CHC also was a factor in the demands expressed by caregivers. Conclusions: While all caregivers of children with DS described demands, results from preliminary findings showed the presence of CHD increased the number of demands for families. The presence of CHD also increased the acuity of the health-related demands. As nurses, it is important to be aware of these demands, particularly with regards to resources and support to families.
Partnering with Consumers, Experts in their Health
Elisabeth Coyne
Griffith University, Brisbane, QLD, Australia
Abstract
Patients and their families (i.e. Consumers) are experts in their own health and family and bring invaluable insights gained through their lived experiences to the development of research, education, and health policy. Their involvement should be integral from the outset, informing decisions that directly impact healthcare delivery and professional education. However, most healthcare research, health professional education, and health service delivery are designed without meaningful consumer engagement. This can result in gaps between sustainable healthcare delivery and consumer needs. Engaging consumers can be challenging and time-consuming, as it requires building trust, ensuring clear communication, and fostering supportive relationships. Key recommendations for successful consumer engagement include: 1) Align consumer involvement directly with the research or education area targeted for improvement; 2) Move beyond tokenism by defining a clear purpose and focus that genuinely values consumer contributions; 3) Provide ongoing guidance to help consumers understand their role and navigate the complex language and processes of research; 4) Take into account their potential vulnerability as patients or family members; 5) Offer opportunities for consumer workshops and meetings with other research consumers; 6) Ensure research meetings are genuinely collaborative, with the consumer voice being an integral part of the process; 7) Create space for consumers to share concerns, while also managing engagement to reduce distress and risk; and 8) Provide reimbursement or incentives to acknowledge consumers’ time and ensure their involvement does not incur personal costs. Despite the challenges, such as time and differing expectations, the long-term benefits outweigh the difficulties. Using a co-design framework, with an emphasis on collaboration and relationship building, to co-create research leads to the development of authentic and relevant outcomes. This plenary provided practical strategies of how to build and sustain a consumer partnership for the development of research and education.
Enhancing the Delivery of Cancer Education with Consumer-focused Videos
Elisabeth Coyne1, Joan Carlini2, Julia Robertson Masters2, Natalie Winter3, Georgia Halkett4, Karin B Dieperink5
1Griffith University, Brisbane, QLD, Australia. 2Griffith University, Gold Coast, QLD, Australia. 3Deakin, Melbourne, Vic, Australia. 4Curtin, Perth, WA, Australia. 5University of Southern Denmark, Odense, Denmark
Abstract
Background: Globally, over 43 million cancer survivors recover at home, relying on family caregivers for practical care, emotional support, financial management, and decision-making. As treatment becomes more complex, caregiver burden increases, with families managing tasks such as medication schedules, wound care, pain management, nutrition, and exercise. To improve the quality of life for cancer patients and their caregivers, accessible information on symptom management, treatment, caregiving, and self-care is essential. This research developed and evaluated co-designed, video-assisted health education aimed at empowering families with the knowledge needed to enhance at-home cancer care management. This research is grounded in Family System Theory which emphasizes the family as the unit of care. Method: A descriptive quantitative design was used to assess the impact of video-assisted health education on hospital readmissions and patient and family outcomes. The evaluation incorporated surveys (self-efficacy, supportive care needs, health literacy) and chart audits to gather comprehensive data. Participants included patients and family affected by head and neck or gastrointestinal cancer, recruited from a chemotherapy unit. The integration of surveys and chart audits strengthens the validity of the study's conclusions. Results: A sample of 145 participants were recruited (patient n=124: family n=21). The survey results revealed a significant correlation between higher unmet supportive care needs, lower confidence in managing and lower health literacy levels. Admission to emergency was significantly correlated with lower confidence in managing and health literacy levels. Conclusions and Implications: The research underscores the importance of health professionals collaborating with patients and their families to customise information according to their health literacy levels. This will enhance patients' and caregivers' confidence in managing treatment effects at home. Tailoring education ensures better understanding of medical instructions, empowering them to make informed decisions and manage homecare, which has potential to improve health outcomes and reduce hospital readmissions.
Improving Family Outcomes by Giving Consumers A Voice in Health Student Education: A Systematic Literature Review
Elisabeth Coyne1, Katina Corones-watkins1, Lana Mitchell1, Hayley Mongta1, Rachel Wardrop1, Mandie Foster2, Virginia Jones3, Lynda Hughes1
1Griffith University, Brisbane, QLD, Australia. 2Auckland University of Technology, Auckland, New Zealand. 3University of Otago, Auckland, New Zealand
Abstract
Background: Engaging and empowering people in their own care is a global health. Health professionals need to understand the patient and family perspective to provide effective and efficient care. Working with patients and family [consumers], listening to their story and understanding how to meet their needs. Including health consumers within teaching of health students enables an understanding of how to work with consumers. Health consumers are experts in their experience of healthcare, wanting a partnership with the healthcare provider, however the tertiary setting for teaching often lacks the consumer voice. Methods: A systematic review of literature was conducted over five databases exploring healthcare consumers’ contribution to teaching and learning in undergraduate health professional programs. The systematic review method was used to enable a broad range of literature to be included and facilitate analysis. Towle's taxonomy measured educational level of consumer engagement. A narrative analysis was conducted to identify themes. Results: A total of 109 articles were included, predominately from Ireland and United Kingdom. Nursing, medicine and social work were the main health disciplines focusing on mental health or chronic disease. The mean student sample size was 186 for quantitative studies and 43 for qualitative studies. Towles taxonomy indicates consumers were engaged in teaching and evaluating students, a pre-brief and debrief was needed for both the students and the health consumers. There was minimal evidence of engagement at higher levels of sustained involvement in teaching, evaluation, curriculum design, and policy development. The themes were developed into three aspects of consumer engagement: educational; human; and logistical perspectives. Conclusion: This review explored how health consumers work with undergraduate students to enable a deeper understanding of consumer experience of health care. Working to integrate consumers into undergraduate health professional programs at all levels of teaching will ensure stronger family partnerships in clinical practice.
Normalizing the Attachment and Child Health (ATTACH™) Program: Parents’ Perspectives on Integrating a Reflective Functioning Family Intervention into Community Practice
Alexander Cuncannon1, Nicole Letourneau1,Jason Novick1, Alexandria Lozowchuk1, Lubna Anis1, Ian Graham2, Martha Hart1, Kharah Ross3
1University of Calgary, Calgary, Alberta, Canada. 2Ottawa Hospital Research Institute, Ottawa, Ontario, Canada. 3Athabasca University, Athabasca, Alberta, Canada
Abstract
Background: Parenting programs play a vital role in fostering safe and nurturing family relationships. The Attachment and Child Health (ATTACH™) parenting intervention strengthens parents’ capacities to support their children’s mental health and development, especially within families affected by early adversity and toxic stress (e.g., family violence and poverty). Delivered by facilitators at community agencies including domestic violence shelters, ATTACH™ engages parent-child dyads in 10-week sessions designed to enhance parental reflective functioning (PRF; i.e., parents’ attunement to the mental states of themselves and their children), through practice to promote secure attachment. Despite the value of evidence-based parenting programs like ATTACH™, translating research into real-world settings remains a challenge. Sustained implementation and long-term impact depend on aligning interventions with the needs of families and the capacities of agencies. Purpose: To use the normalization process theory (NPT) framework to understand how ATTACH™ can be integrated and normalized into everyday practice within the community sector. Methods: We thematically analyzed NPT-informed semi-structured interviews with parents (n=13) to describe their perspectives on the normalization of ATTACH™. Results: Thematic deductive analysis revealed themes among NPT constructs of: (1) coherence - parents recognized ATTACH™ as uniquely fostering reflective functioning and improving parent-child interaction quality; (2) cognitive participation - parents underscored the value of supportive space to reflect on and learn from their children’s interactions and development; (3) collective action - parents reported that ATTACH™ bolstered their engagement with agency programing and staff; and (4) reflexive monitoring - parents reflected on building positive parenting skills and improving broader family relationships. Themes are supported by illustrative quotes. Conclusions and Implications: Parents’ insights are shared with the ATTACH™ team, parent and community engagement communities, and agency partners to validate findings. Findings guide further integration and implementation of ATTACH™ in community settings, supporting families with psychosocial vulnerabilities and promoting healthy child development.
Measuring Constructs Associated with the Roles, Experiences, and Identities of Family Caregivers of Individuals with Alzheimer’s Disease and Related Dementias: A Review
N. Maritza Dowling1, Brittany Klenczar-Castro2, Erin Rook2, Kari Hancock3, Max O'Hala2, Cody Yamada2, Stephanie Mendizabal2, Joel Anderson3, Jason Flatt2
1The George Washington University, Washington, DC, USA. 2University of Nevada, Las Vegas, Nevada, USA. 3University of Tennessee, Knoxville, Tennessee, USA
Abstract
Background and Purpose: As the demand for informal care for those living with Alzheimer’s disease and related dementias (ADRD) increases, effective instruments to assess the impact of caregiving among a diverse population of family and friend caregivers are needed to inform tailored interventions. We conducted a scoping review to identify instruments assessing constructs associated with the roles and experiences of ADRD caregivers to determine the utility, applicability, and generalizability of current measures. We applied the scoping review framework of Aromataris and Munn. Methods: Five databases (PubMed, Scopus, Embase, PsycINFO, CINAHL) were searched for publications from 1980 to 2023 describing the following: development of an instrument to assess the experiences of informal ADRD caregivers, the psychometric properties of the instrument, and the characteristics of the sample used for the validation process. Covidence was used to screen retrieved studies and relevant data were extracted and summarized using an a priori data extraction tool. Results: The search yielded 23,099 articles, of which 160 met inclusion criteria. Most instruments measured negative aspects of caregiving (burden, distress, dysfunctional thoughts, isolation). A smaller set of instruments focused on positive dimensions of caregiving (self-actualization, rewards, satisfaction, resilience). The psychometric rigor of instruments varied significantly. Most sample sizes were small and mainly included spousal or child caregivers, limiting generalizability across diverse populations of caregivers. While more recent instruments have focused on new constructs associated with caregiving burden, validation samples tend not to be representative of the larger population of caregivers from various family structures and diverse racial/ethnic groups. Conclusions and Implications: The interpretability and meaningfulness of inferences based on scores from existing caregiving instruments depends on the relevance and utility of those scores. This review highlights the need to develop measures that capture the multifaceted experiences of a diverse and more representative sample of ADRD caregivers.
A Child-Centred Research Checklist to Improve the Design and Reporting of Paediatric Research Studies: A descriptive Mixed Methods Study
Mandie Foster1,2, Lisa Whitehead1,3, Therese O’Sullivan4,5, Julie Hill4, Evalotte Mörelius1,6
1Edith Cowan University, School of Nursing and Midwifery, Perth, Western Australia, Australia. 2Auckland University of Technology, School of Clinical Sciences, Nursing, Auckland, Auckland, New Zealand. 3Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, Canterbury, New Zealand. 4School of Health and Medical Science, Edith Cowan University, Perth, Western Australia, Australia. 5Nutrition & Health Innovation Research Institute, Perth, Western Australia, Australia. 6Department of Medicine and Caring Sciences, Linköping University, Linköping, Linköping, Sweden
Abstract
Background and Purpose: No child-centred-research-checklist (CCRC) is currently available to enhance the quality and transparency of the development, reporting and evaluation of research undertaken with children and families. Our objective was to develop an internationally relevant, expert informed CCRC. Methods: We employed a descriptive mixed-methods study undertaken in five sequential phases in an academic and international context. This study involved five sequential stages: 1. Literature review using four databases (CINAHL, MEDLINE, Scopus, PsycINFO) and analysis to identify key themes in child-centred research (January 2020); 2. Generate a questionnaire based on the key themes for international experts in child research to provide their opinions on what should be included in a CCRC (March 2020); 3. Inductive thematic analysis of the experts’ responses to generate the initial draft checklist (June 2020); 4. The checklist progressed through three-rounds of Delphi study for a wider range of experts to provide their consensus on what a CCRC should contain (August 2020-February 2021); 5. Refinement of the CCRC based on the Delphi study (March 2021- November 2022). Results: A total of 160 articles met the inclusion criteria for review and were considered in the development of a 10-item open-ended questionnaire, adapted for four age-brackets (0-1yrs, 2-4yrs, 5-10yrs, >11yrs). Responses from 14 experts across 10 countries generated 205 generic statements and 76 examples to inform a CCRC. Following this, 158 experts from eleven disciplines across 18 countries participated in the three-round Delphi study. The final checklist includes 11 statements and 17 examples represented under three categories of “child-parent consent, assent and dissent”, “code of conduct” and “child focused methods”. Conclusions and Implications: The CCRC is the first international, expert informed tool to support good quality and transparent child-centred research. The next phase of this project is engagement with children and their families to refine the checklist.
A Strengths-Based Approach for The Triangle of Care in an Acute Mental Health Unit
Karen Foster1, Linda Coventry1, Yvonne Middlewick1, Lindsay Smith2,3, Beverley Ewens1
1Edith Cowan University, Perth, WA, Australia. 2Charles Sturt University, Bathurst, NSW, Australia. 3Edith Cowan University, Perth, WA, Australia
Abstract
Background and Purpose: A doctoral study of mental health nursing was conducted in Australia focused on the Triangle of Care. The Triangle of Care comprises: Person with lived experience of mental health challenges; Families; and Nurses. Family members often provide insight into loved ones’ mental states and early signs of mental state deterioration, playing an important role in care. Recovery is relational and social in nature and mental health challenges impact the family and broader social network. Therefore, engaging and collaborating with family is an integral component of early recognition of mental state deterioration. This study explored the interwoven communication and engagement between the Triangle of Care in relation to mental state changes and recovery. Methods: This study used an interpretive biographical approach to explore mental health challenges as part of an individual’s life story by capturing epiphany or turning point moments in their journey. Utilising a strengths-based approach to these stories, the findings highlighted individual and systemic factors that positively influence recovery related to each member of the Triangle of Care. Participants with living experience of acute hospitalisation due to mental health challenges were encouraged to use creative means (for example music and art), to express their experiences through the creation of artefacts which captured their experiences of communication during an acute admission. Interviews were conducted with these participants to co-construct and interpret their stories through these artefacts. Interviews were also undertaken with family members and support networks; nursing staff completed a questionnaire. Reflexive thematic analysis was utilised to capture key themes from the interviews and stories. Results: The findings provided insights into clinical improvements, specifically, enhancing communication and engagement in acute mental health inpatient units. Conclusions and Implications: The findings may facilitate growth of relationships within the Triangle of Care to better utilise family strengths as they navigate mental health recovery in partnership.
Partial Results in a Grounded Theory Study: Identification of Key Concepts for Family Nursing in Nursing Practice in Quebec
Sabrina Fournelle
Université de Sherbrooke, Longueuil, Quebec, Canada
Abstract
Background and Purpose: To cope with the growing complexity of healthcare situations, nurses must assess and intervene with families. A relational approach is crucial to ensure quality and continuity of care. However, some nurses indicate not knowing how to intervene with families considering their clinical reality. Little has been written about the family approach in the current context of care in Quebec and nurses' clinical reality. It is currently difficult to define the place and scope of the family approach in nursing practice in Quebec. Thus, the purpose of this study was to model the family approach to nursing practice in Quebec. Methods: We undertook a grounded theory study designed to model the family approach in nursing practice in Quebec. A deductive step in the iterative process of collecting and analyzing data is to do an integrative review to identify key concepts of family nursing in the scientific literature to be considered, in addition to the inductive phase of the study which takes place with nurses in Quebec. This integrative literature review considered relevant sources from 2004 to 2024 on Pubmed and CINAHL to be added in the study with data from participants. Results: The partial results are divided into two parts: 1. theoretical notions for family care, including systemic approach and therapeutic communication skills, and 2. strategies to communicate, assess and intervene with families. Nurses have a duty to develop and highlight the relational approach with families in various healthcare contexts. It is therefore essential to contribute to the advancement of nursing knowledge, by clarifying the place and scope of this relational approach in nursing practice, with inductive and deductive approaches in studies. Conclusions and Implications: This research could contribute to reflections and discussions on this crucial clinical and educational topic. The project will also develop recommendations to support nurses in the optimal use of this relational approach.
Feasibility and Preliminary Effects of a Socio-spiritual Intervention for Adults with Cancer and their Family Caregivers: A Pilot Randomised Controlled Trial
Israel Gabriel1, Debra Creedy2, Elisabeth Coyne2
1Institute of Health and Management, Sydney, NSW, Australia. 2Griffith University, Brisbane, Queensland, Australia
Abstract
Background: Despite significant psychosocial-spiritual needs adversely affecting the health-related quality of life of adults living with cancer and their family caregivers in sub-Saharan Africa, there is a dearth of culturally tailored intervention to address these needs. This study evaluates the feasibility of a socio-spiritual intervention designed for adults with cancer and their family caregivers in sub-Saharan Africa and preliminary examines its impact on family/social support, spiritual needs, information needs, health literacy, and health-related quality of life. Methods: This study employed a single-site, randomized, controlled trial designed. Eighty-eight dyads were randomly assigned to either a socio-spiritual intervention (n = 44 dyads) or usual care (n = 44 dyads). The intervention group participated in a 4-week face-to-face training programme with usual care, whereas the control group received only usual care over the same period. Results: A total of 82 dyads completed the study (40 dyads in the intervention group, 42 dyads in the control group). The eligibility and acceptance rates were >85%, retention was >90%, and treatment fidelity was high (between 88.5% and 94.6%). In terms of intervention effects, the intervention was helpful in reducing needs and improving health-related quality of life of adults with cancer (F (13, 65) = 24.50, p <.001; Wilks' Lambda =.17) and their family caregivers (F (13, 65) = 14.27, p <.001; Wilks' Lambda =.26). Conclusions and Implications: The findings from this study suggest that supporting individuals with cancer and their family caregivers as a unit of care helps maintain or improve individual needs and components of health-related quality of life. In contrast, current practices in Nigeria focus solely on patients' needs, while caregivers are often left to independently seek information and support to manage complex care responsibilities.
Perception of the School Multidisciplinary Team Non-Suicidal Self-Injury in Adolescents: Reflections on Role of the Family
Bianca Cristina Ciccone Giacon-Arruda1, Giovanna Aparecida Larréa Corrêa1, Adriana Rosa da Silva Rodrigues1, Sonia Regina Zerbetto2, Gabriele Cássia Santos Silva1, Guilherme Oliveira de Arruda1, Helder de Padua Lima1, Tassia de Arruda Bonfim3, Sueli Aparecida Frari Galera3
1Federal University of Mato Grosso do Sul, Campo Grande, Mato Grosso do Sul, Brazil. 2Federal University of São Carlos, São Carlos, São Paulo, Brazil. 3Nursing School of Ribeirão Preto by University of São Paulo, Ribeirão Perto, São Paulo, Brazil
Abstract
Background and Purpose: Non-Suicidal Self-Injury (NSSI) in adolescents, characterized by self-inflicted skin injuries without suicidal intent, has become a reality in schools. This situation challenges educational institutions to develop strategies to identify and support individuals in distress. The aim of this study was to understand and analyze the relationship between the multidisciplinary team at the educational institution and the families of adolescents engaging this behavior. Methods: A qualitative, descriptive-exploratory study was conducted with the pedagogical, psychosocial, and health support teams. Data were collected through focus groups with 25 professionals, divided into 5 groups of 4-7 participants each. Data analysis was performed using thematic content analysis. Results: After analyzing the data, two thematic categories emerged: 1) "The team's perception of the family": The family was identified as a potential contributing factor to adolescents' mental distress. The lack of knowledge among caregivers about self-harm behaviors led to inadequate management of the issue. Additionally, a weakened dialogue between the family and the adolescent was observed. Positive experiences were reported when families became more engaged, demonstrating concern for the adolescent's health and fostering a more supportive environment. 2) "Collaboration between the team and the Family": Collaboration between the school and the family was considered essential for monitoring and supporting the adolescent. The need for closer ties between the school and families was identified to facilitate effective monitoring and assistance. However, organizational and legal aspects were highlighted as significant challenges in providing adequate support to adolescents. Conclusions and Implications: Effective collaboration between the school and family is essential in addressing NSSI behaviors. Furthermore, the implementation of actions promoting integrated strategies involving schools, health services, and the community is necessary.
The Family's Experience in Caring for a Family Member with Huntington's Disease
Gabriele Cássia Santos Silva1, Sueli Aparecida Frari Galera2, Elen Ferraz Teston1, Tassia de Arruda Bonfim2, Ana Carolina Guidorizzi Zanetti2, Sonia Regina Zerbetto3, Bianca Cristina Ciccone Giacon-Arruda1
1Federal University of Mato Grosso do Sul, Campo Grande, Mato Grosso do Sul, Brazil. 2Nursing School of Ribeirão Preto by University of São Paulo, Ribeirão Preto, São Paulo, Brazil. 3Federal university of São Carlos, São Carlos, São Paulo, Brazil
Abstract
Background and Purpose: The family is essential in caring for individuals with Huntington's disease, improving their quality of life. However, they face challenges such as changes in routine, loss of freedom, impact on relationships and self-care, in addition to dealing with the symptoms of the disease. Therefore, the purpose of this study was to analyze the experience of the family in the process of caring for a family member with Huntington's disease. Methods: This is a qualitative study based on the theoretical framework of Kleiman's Explanatory Model of Disease. The participants were 22 family members of individuals with Huntington's Disease, who were contacted through a public invitation in an association for individuals and family members with Huntington's Disease in Brazil, and on social networks. Data were collected using the group interview technique, adapted for a group of participants on the WhatsApp application. Data analysis followed the framework of Content Analysis, thematic modality. Results: The care process is permeated by different feelings, overload and challenges. The organization of the environment and routine, the performance of enjoyable activities and those that promote social interaction were indicated by family members as facilitators in this process. And, as challenges, the lack of knowledge of health professionals, financial factors and the fragility of the care networks for people with rare diseases. Conclusions and Implications: The importance of implementing public policies and improving professional training for comprehensive care for this population is highlighted, as is the need to recognize and include the family as a unit of care in health care. In this way, this study tends to strengthen the practice of family nursing, contributing to more empathetic, humanized care that is centered on the real needs of individuals and their families.
Teaching-Learning Process in Family Systems Nursing: An Analysis of Practical Experiences
Tassia de Arruda Bonfim1, Bianca Cristina Ciccone Giacon-Arruda2, Sueli Aparecida Frari Galera1
1Nursing School of Ribeirão Preto by University of São Paulo, Ribeirão Preto, São Paulo, Brazil. 2University Federal of Mato Grosso do Sul, Campo Grande, Mato Grosso do Sul, Brazil
Abstract
Background and Purpose: There are gaps involving the implementation and integration of learning in Family Systems Nursing and its use in care practice. This research aimed to develop an educational program on Family Systems Nursing for undergraduate nursing students. Methods: Intervention study, descriptive and qualitative design. Semi-structured interviews were used. The theoretical framework was Family Systems Nursing and the methodological framework was the knowledge transfer model. Fourteen undergraduate nursing students and three families participated in the study. The students were divided into groups, each conducted three interviews with a family in alternating weeks with meetings with the researcher in charge. All interviews were recorded on digital audio media, the data were transcribed and submitted to thematic content analysis. Results: The analysis of the interactions between the researcher and the students resulted in the construction of four concepts about the teaching-learning process in Family Systems Nursing. They are: Uncertainties in conducting the family interview, common errors in the practice of Family Systems Nursing, the teaching-learning process in practice, and the repercussions of the family interview. Conclusions and Implications: The findings showed that the students improved their ability to identify the family problem and how it affects family life. However, there is still difficulty in describing it from a circular perspective, as well as in thinking about how family relationships are maintained in a reciprocal way and how they improve or worsen the problems identified by the family. This research contributed to deepening the students' knowledge and skills in the practice of family nursing, in addition to promoting interactions and reciprocity among family members and between the family and the health system.
Family Strengths in Families Experiencing Depression: A Families’ Characterization Study
Maria do Carmo Lemos Vieira Gouveia1,2, Eydis Kristin Sveinbjarnardottir 3,4, Maria Adriana Pereira Henriques5,2
1Higher School of Health - University of Madeira, Funchal, Madeira Island, Portugal. 2Nursing Research, Innovation and Development Centre of Lisbon - CIDNUR, Lisbon, Portugal, Portugal. 3Faculty of Nursing and Midwifery University of Iceland, Reykjavik, Iceland, Iceland. 4School of Health Sciences, University of Akureyri, Akureyri, Iceland, Iceland. 5Higher School of Nursing of Lisbon University of Lisbon, Lisbon, Portugal, Portugal
Abstract
Background and Purpose: Depression is a serious and disabling mental illness that deeply affects individuals and families. Recognizing, uncovering and developing the family's strengths, is a mental health nurses’ obligation and an essential therapeutic intervention for reducing family suffering and promoting a healthy family functioning. An intervention focused on identifying and valuing the family's strengths promotes the development of the family's capacities and resilience and makes them less susceptible to seeing stressful situations as problematic. Based on the Calgary Family Assessment and Intervention Models and Gottlieb’s Strengths model, the study aimed to identify and describe family strengths in families affected by depression and contribute to the development of an intervention focused on promoting the expressive functioning of these families. Methods: An exploratory, descriptive and cross-sectional study with a qualitative approach was undertaken. One hundred and twenty-four Portuguese participants, including depressed patients and their family members, joined voluntarily to the study. Data were collected through a semi-structured interview and analysed through content analysis technique with the software QRS NVivo13. Results: The analysis of the families' discourse found two categories: Family outer resources, which stand for easy access to health care, social institutions, health institutions, internet, health professionals, economic resources, social relationships, drug therapy, complementary therapies and employment; Family inner resources, which express positive attitude, cognitive ability, family cohesion, family communication, family coping, role performance, vital energy, family instrumental functioning, motivation, biological origin, family rituals, family belief system and family support. Families significantly emphasize their internal resources, indicating that, for the most part, the resources needed to deal with the illness and change, are within themselves. Conclusions and Implications: The results reinforce the need for nurses to recognize, uncover and reinforce families' strengths, as a family-centered therapeutic intervention that will enable families to be agents of their own healing and change.
InterF@M’s - A Family Strengths Focused Therapeutic Intervention For Families Dealing With Depression
Maria do Carmo Lemos Vieira Gouveia1,2, Eydis Kristin Sveinbjarnardottir3,4, Maria Adriana Pereira Henriques 5,2
1Higher School of Health University of Madeira, Funchal, Madeira Island, Portugal. 2Nursing Research, Innovation and Development Centre of Lisbon CIDNUR, Lisbon, Portugal, Portugal. 3Faculty of Nursing and Midwifery University of Iceland, Reykjavik, Iceland, Iceland. 4School of Health Sciences, University of Akureyri, Akureyri, Iceland, Iceland. 5Higher School of Nursing of Lisbon University of Lisbon, Lisbon, Portugal, Portugal
Abstract
Background and Purpose: Depression is a common mental illness that significantly impacts family dynamics, disrupting communication, emotional involvement, and problem-solving. Mental health nurses play a crucial role in supporting families affected by depression through comprehensive family assessments and facilitating family change. However, there is a need for practice-oriented protocols to guide these nurses. The INterF@M’s program was developed based on Wright and Leahey’s Family Assessment and Intervention models, Gottlieb’s Strengths Model, and Bell’s Illness Beliefs Model. It aims to enhance family functioning by focusing on cognitive, emotional, and behavioural changes. The study aimed to describe the development and structure of INterF@M’s, making it available to nurses who wish to implement family-centered interventions. Methods: The study followed the Medical Research Council framework for developing and evaluating complex interventions. In the development phase, Study I involved 124 family members (semi-structured interviews, questionnaires; qualitative and quantitative methods), Study II assessed 13 nurses (2 focus groups; qualitative methods), and Study III focused on intervention design with 8 nurses (qualitative methods). In the feasibility phase, Study IV involved 9 nurses and 23 family members (3 focus groups, interviews, questionnaires; qualitative and quantitative methods). Results: The intervention included 9 to 12 sessions lasting 60 minutes, incorporating psychoeducation, problem-solving, therapeutic letters, and circular pattern diagrams. Sessions were tailored to each family needs, and family strengths were emphasized throughout. Nurses suggested the addition of individual sessions in some cases. After the intervention, families reported improved interaction and a better understanding of depression, while nurses developed stronger therapeutic skills. Family expressive functioning and perceived support improved, and depression levels in family members decreased. All participants recognized the benefits and recommended the program's continuation. Conclusions and Implications: The INterF@M’s is a feasible and well-accepted tool that effectively supports mental health nurses in guiding families through the challenges of depression.
Psychometric Validation of the European Portuguese Version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) in Families Affected by Depression
Maria do Carmo Lemos Vieira Gouveia1,2, Eydis Kristin Sveinbjarnardottir3,4, Rita Maria Lemos Baptista Silva1, Márcia Sílvia Baptista5, Maria Adriana Pereira Henriques6,2
1Higher School of Health - University of Madeira, Funchal, Madeira Island, Portugal. 2Nursing Research, Innovation and Development Centre of Lisbon - CIDNUR, Lisbon, Portugal, Portugal. 3Faculty of Nursing and Midwifery University of Iceland, Reykjavik, Iceland, Iceland. 4School of Health Sciences, University of Akureyri, Akureyri, Iceland, Iceland. 5Regional Directorate for Integrated Policies and Longevity, Regional Government of Madeira Regional Secretariat for Health and Civil Protection, Funchal, Madeira Island, Portugal. 6Higher School of Nursing of Lisbon University of Lisbon, Lisbon, Portugal, Portugal
Abstract
Background and Purpose: Depression is a global psychiatric condition affecting over 300 million individuals, significantly burdening patients and their families. Supporting families is essential, as depression often disrupts family dynamics, necessitating targeted interventions. Nurses play a vital role in empowering families, and family nursing interventions have demonstrated beneficial effects on individuals and families. To evaluate these interventions, valid and reliable instruments are crucial. In Portugal, no instrument exists to measure family support perceptions in contexts of depression. This study aimed to adapt the Iceland Family Perceived Support Questionnaire (ICE-FPSQ) for European Portuguese and determine its psychometric properties. Methods: Methodological, cross-sectional study was conducted in two phases: translation, back-translation, and experts consensus meetings to ensure content validity; assessment of the instrument psychometric properties, through validity and reliability studies, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA) using IBM SPSS Statistics v.24 and SPSS AMOS v.24. Family perceptions of cognitive and emotional support provided by nurses, were assessed in 119 participants including patients with depression and their family members at Portuguese psychiatric hospitals and Primary care centers. Results: EFA extracted two factors explaining 65.164% of total variance. Item loadings exceeded 0.55. Psychometric analysis demonstrated adequate internal consistency for the total scale (α=.94) and individual factors: Emotional Support (α=.93) and Cognitive Support (α=.86). The instrument showed good factorial validity, with factor loadings above the reference value (.40) and fit indices (χ²/df=1.913, CFI=.946, SRMR=.044, GFI=.866, RMSEA=.088). CFA led to the elimination of Item 8, resulting in a modified Portuguese version. Conclusions and Implications: The Portuguese version of the ICE-FPSQ, is a sensitive, valid, and reliable instrument for assessing family support perceptions in clinical and research settings. It provides critical insights into the effects of nursing interventions on families dealing with depression, offering a valuable resource for improving healthcare outcomes.
The Grief Process of Parents Who Lost a Child: A Case Study on Virtual Child Growth and Parental Adaptation to Grief
Yuko Hamada1,2, Ayaka Fujita1,2, Harumi Moriguchi2, Kaori Aihoshi3,2
1Shimonoseki City University, Shimonoseki, Japan. 2Non Profit Organization Fukuoka Children's Hospice Project, Fukuoka, Japan. 3Kyushu University, Fukuoka, Japan
Abstract
Objective: Despite recognition of the need for grief care for bereaved families after a child’s death, post-loss support in Japan remains insufficient. This study focuses on the phenomenon of parents imagining their deceased child’s continued growth, observed in regular bereavement support gatherings. We conducted a case study to explore the child’s existence for bereaved parents and their grief adaptation process.
Method: In this qualitative descriptive study, we employed thematic analysis. We collected data from one mother who lost her child through five grief group sessions. The study was approved by our Institution’s Research Ethics Committee.
Case Introduction: The participant is a mother who lost her twelve-year-old son to leukemia after a two-year battle. She has attended grief support meetings five times since her son’s death, sharing her experiences. The mother actively participates in these meetings, expressing strong emotions during significant milestones and sharing photos and images of her son.
Results: We identified four main themes: 1) Virtual growth of the child: The mother continually imagined her deceased child’s growth; 2) Cyclical emotional waves: Emotional fluctuations occurred at specific times or anniversaries; 3) Development of emotional regulation: The mother gradually acquired the ability to control her emotions; and 4) Continuation and redefinition of parental role: The mother continued her parental role in new ways. Conclusion and Implications: This case study suggests that parental grief is a complex, long-term adaptation process. The mother maintained a continuous bond with her child by imagining virtual growth, while developing emotional regulation skills and redefining her parental role. Participation in grief support groups appears to play a crucial role in supporting this adaptation process. This study demonstrates that parental grief following child loss is a long-term adaptation process. Findings suggest the importance of long-term, individualized support in grief care for bereaved parents, focusing on maintaining bonds and redefining parental roles.
A Typology Focusing on the Direction of Coping with Depression as a Family System
Yuka Harada, Izumi Sawada
Sapporo medical university, Sapporo, Hokkaido, Japan
Abstract
Background and Purpose: Families of patients with depression are often seen as supporters of the patient and the effects of depression on their efforts to cope with the situation are not yet fully understood. We attempted to categorize the direction of coping patterns of a family system dealing with depression. Methods: Semi-structured interviews were conducted with 20 family members who were parents, spouses, siblings, or children of those with depression. Analysis was conducted using Kinoshita's modified grounded-theory approach. We focused on the direction of coping in the family system and examined coping patterns as a family system for dealing with depression. Results: For the coping pattern, 17 categories and 56 concepts extracted from the interviews with the 20 subjects were arranged assuming a pattern focusing on their relevance. As a result, the following five types of coping patterns were found. The first type was the “Monopolar concentration” in which a specific member of the family is intensively involved in care of the person with depression. The second type was “Distributed” in which family members play roles individually supporting the dietary side, confirming safety, and listening to complains, etc. The third type was “Substitution” in which other family members assume the roles of the family member with depression. The fourth type was “Tolerant” family members who continue to live a conventional life without paying special attention to depression and do not emphasize support. Finally, the fifth type was about coping in relation to the higher system, called “connecting with the community”. Conclusions and Implications: Five types of coping with depression as a family system were found, which can be categorized into the direction of supporting the person with depression, the direction of maintaining the daily life of family members, and the direction to strengthen the foundation of the family system that support these directions.
Family Caregiving Competencies for Nursing Education: Course and Curricular Integration
Sara Hart1, Kathryn Sexson2, Connie Perkins3, Hui Zhao4, Nannette Cowen5, Tanya Seward6, Andra Davis7, Jennifer Mongoven8
1University of Utah College of Nursing, Salt Lake City, Utah, USA. 2Retired, Betty Irene Moore School of Nursing at the University of California Davis, Sacramento, California, USA. 3St. Bonaventure University, Bonaventure, New York, USA. 4James Madison University, Harrisonburg, Virginia, USA. 5Binghamton University Decker School of Nursing and Health Sciences, Johnson City, New York, USA. 6University of Providence, Great Falls, Montana, USA. 7University of Portland, School of Nursing and Health Innovations, Portland, Oregon, USA. 8Family Caregiving Institute, Betty Irene Moore School of Nursing at UC Davis, Sacramento, California, USA
Abstract
Background: The United States healthcare system is increasingly dependent on family caregivers who play an essential role in addressing the needs of loved ones who are aging, managing chronic or disabling conditions, or facing life-limiting illnesses. Yet, nursing education lacks standardized competencies focused on family caregivers. Methods: In 2022, a National Consortium launched with the goal of developing nursing competencies for recognizing family caregivers as key members of a person and family-centered healthcare team. Consortium members with diverse expertise in education and family caregiving were recruited via the professional networks of national experts and professional organizations’ listservs. Using a backward design approach, guiding documents were consulted, including existing interprofessional competencies. Draft competencies were crosswalked with the AACN Essentials (2021) to align learning outcomes with standards for nursing education. Feedback was elicited at national meetings, via professional listservs, and with validity checks by an advisory of national experts. Competency development was also informed by organizations representing family caregivers (AARP, RAISE, National Alliance for Caregiving).
Results: The National Consortium for Family Caregiving in Nursing Education has developed nineteen entry-level nursing education competencies for identifying, integrating, and supporting family caregivers in person-centered and family-centered healthcare teams. These competencies fall within four domains: the Nature of Family Caregiving, Family Caregiving Identification and Assessment, Providing Family-centered Care, and the Context of Family Caregiving. Conclusions and Implications: Given the time and content limitations of nursing education and the dynamic nature of healthcare, new educational competencies often encounter resistance. Course and curricular resources and recommendations have been created by the Consortium to support nursing educators in identifying and integrating learning that advances the inclusion of family caregivers and that promotes nursing student development of family caregiving competencies.
The Development of Programme Theory for a Family Focused Model of Telepalliative Care
Eithne Hayes Bauer1,2,3, Frans Brandt1,2, Anthony C Smith4,3, Georg Bollig5,6, Karin Brochstedt Dieperink7,8
1Internal Medicine Research Unit, University Hospital of Southern Denmark, Aabenraa, Denmark. 2Institute for Regional Health Research, University of Southern Denmark, Odense, Denmark. 3Centre For Innovative Medical Technology, Odense University Hospital, Odense, Denmark. 4Centre for Online Health, The University of Queensland, Brisbane, Queensland, Australia. 5Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, Helios Klinikum Schleswig, Schleswig, Germany. 6Department of Palliative Medicine, University of Cologne, Faculty of Medicine and University Hospital, Cologne, Germany. 7Department of Oncology, Odense University Hospital, Odense, Denmark. 8Department of Clinical Research, University of Southern Denmark, Odense, Denmark
Abstract
Background and Purpose: Telepalliative care has gained importance, providing convenience and improving family engagement in palliative care. Challenges remain regarding integration into standard care, which may be diminished by the use of structured models of telepalliative care. This study aims to engage key stakeholders to develop programme theory for a family focused model of telepalliative care in a Danish context. Methods: We employed a qualitative, explorative design with stakeholder involvement to ensure relevance to local contexts, guided by the British Medical Research Council’s framework for the development and adaptation of complex interventions. Participants were purposively recruited from two Danish hospitals and surrounding municipalities, including patients, families, healthcare professionals, IT consultants and voluntary staff. Data were collected through workshops and observations and analysed using reflexive thematic analysis. Results: Six workshops with 48 participants (October 2023 to May 2024) and six participant observations with five participants (November 2024) were performed at two sites in Southern Denmark. Three themes were generated from the data: 1. Virtual care in palliative settings; refers to how palliative care tasks are preformed and transformed through technology. 2. Balancing trust and technology; refers to how stakeholders attempt to strike a balance to situate core palliative care constituents within telepalliative care. 3. Governance and equity in telepalliative care; refers to outer components that may affect access, sustainability and quality in telepalliative care. Conclusion: We identified various skills and practices among palliative care providers inherent to family focused telepalliative care in a Danish context. Furthermore, we identified medical professionalism as a contextual factor that may influence the establishment of trustful relations with patients and families in telepalliative care. In-situ training and support, strategies to ensure cross-sectorial collaboration, and alignment of technical solutions are identified as possible mechanisms that may contribute to outcomes for a family focused model of telepalliative care.
Enhancing Parent-Staff Communication in the NICU Using Tiny Star Beads
Christine Heald
St John of God Hospital Subiaco, Subiaco, WA, Australia. University of Tasmania, Hobart, Tasmania, Australia. NurseWest, Perth, WA, Australia
Abstract
Background: Communication between parents and staff, along with staff bedside manner, are major stressors for parents in neonatal units. Additionally, these parents face an increased risk of postnatal depression. To address these challenges, we introduced the Tiny Star Beads program, designed to improve communication between staff and parents, while helping families explain the NICU journey to others. Methods: The bead coordinator or allocated nurse introduces the bead program to parents, explaining how it works. Parents are encouraged to update the star chart, which tracks their baby’s milestone moments. If communication issues arise, parents are guided to clarify queries with staff or seek advice from counselling services if indicated. At discharge, parents receive their baby’s bead chain and are shown how to use it to explain the NICU journey to family, friends, and healthcare professionals. They also receive a copy of the bead chart outlining what day each bead was ‘earnt’. After discharge, parents complete a survey evaluating if the beads aided communication, improved understanding of procedures, addressed mental health concerns, and helped them explain their baby’s journey to others. Results: Responses (N=62) and feedback show the program’s positive impact: 77% (n=48) of parents reported that the beads improved communication, and 87% (n=54) felt the beads enhanced their understanding of the NICU experience. Most found the bead chain longer than expected, though one parent felt the beads underrepresented their baby’s stay. The majority (97%, n=60) would recommend the program to other NICU parents. New results from additional surveys will be available next year to further evaluate the program’s long-term impact. Conclusions and Implications: The Tiny Star Beads program is well-received by parents, offering a visual and meaningful representation of their infant’s journey in the NICU. The beads help facilitate communication and serve as a memento of the milestone moments experienced during their admission.
Teaching Disaster Preparedness To Strengthen Families In Challenging Times
Matthew Anderson, Sondra Heaston, Adrianna Watson
Brigham Young University, Provo, Utah, USA
Abstract
Background and Purpose: In an era marked by increasing natural disasters and emergencies, family resilience is paramount. This quality improvement project aims to explore the impact of disaster preparedness education on individual and family preparedness levels, fostering stronger familial units in times of crisis. Methods: A mixed-methods approach was employed, incorporating an interdisciplinary Mass Casualty simulation drill for nursing students, EMTs, and community first response professionals including a reflective writing assignment. Participants engaged in realistic disaster response scenarios, followed by structured reflections to assess changes in their preparedness mindset and experiences. Results: The findings indicate a significant increase in the nursing students' desire to enhance their personal and familial preparedness. Nursing students had a statistically significant increase in their individual rated confidence to respond to a disaster. Additionally, qualitative feedback emphasized improved understanding of family roles in crisis situations and a stronger inclination to engage family members in preparedness planning. Conclusions and Implications: The results underscore the potential of disaster preparedness education in nursing as a contributor to individual and family preparedness and resilience. By equipping nursing students with the necessary tools and knowledge, communities can foster stronger support systems that are better prepared to face challenging times.
Intervention-Fidelity Outcomes of a Provider-Delivered Communication Intervention to Families of Children with Cancer
Verna Hendricks-Ferguson1, Stacey Crane2, Nancy Dias3, Savannah Horvicks3, Cynthia Holladay4, Amy Newman5, Allie Carter4, Susan Perkins4, Karen Moody6
1Saint Louis University, St. Louis, Missouri, USA. 2Cizik School of Nursing, Houston, Texas, USA. 3East Carolina University, Greenville, North Carolina, USA. 4Indiana University, Indianapolis, Indiana, USA. 5Marquette University, Milwaukee, Wisconsin, USA. 6MD Anderson, Houston, Texas, USA
Abstract
Background and Purpose: A randomized-controlled trial (RCT) is the gold standard for conducting intervention research. Comprehensive intervention-fidelity-monitoring procedures are necessary to ensuring interventions are delivered as intended and consistently. In RCTs of complex-communication interventions, high intervention fidelity is crucial to ensure validity and reliability of family outcomes following receipt of the intervention. The purpose of this report is to describe and evaluate the intervention-fidelity-monitoring procedures from both arms of a multisite RCT, titled Informational Meetings for Planning and Coordinating Treatment (IMPACT). Methods: IMPACT (R01CA235632) evaluated a palliative-care communication intervention delivered by pediatric-oncology physician/advanced-practice provider/nurse (MD/APP/RN) dyads to parents of children with a poor-prognosis cancer. IMPACT intervention goals included fostering alignment of oncologists’ recommended cancer treatments with parent-care goals and parent understanding of child’s cancer diagnosis, prognosis, and treatments. Based on Bellg et al.’s established fidelity-monitoring framework, strategies for managing intervention-fidelity were developed for both arms of IMPACT, including development of treatment protocols, intervener training, intervention-receipt assessments, and systematic external-team quality-assurance evaluations. The minimum acceptable fidelity-compliance rate for both arms was 80% with booster training provided as needed. Results: Ninety-one videos were reviewed. Implemented intervention-fidelity strategies (e.g., number, frequency, and duration of sessions) were used to evaluate the videos for both arms. However, strategies used in each arm differed in terms of family focus, expectations, and personnel who conducted the evaluations. Summary of annual rates for 3 years of combined fidelity-compliance for both IMPACT arms include: control arm range: 47-100%, mean range: 89-93% and intervention arm range: 65-100%, mean range: 86-90%. Conclusions: The strategies used in the IMPACT study resulted in high rates of intervention-fidelity for the control and intervention arms. These findings will enhance the rigor, credibility, and reproducibility of results identified in the IMPACT study regarding the effects of the IMPACT intervention on family outcomes.
Survey on Social Support for Male and Female Family Caregivers in Japan: Considerations towards End-of-Life Care
Kiyomi Hiko1, Shiho Sone2
1Komatsu University Department of Nursing, Komatsu, Ishikawa, Japan. 2Kinjo University Department of Public Health Nursing, Hakusan, Ishikawa, Japan
Abstract
Background and Purpose: Social isolation of the elderly is a challenge in Japan. The social isolation of family caregivers leads to a breakdown in caregiving. In addition, the isolation affects end-of-life care as they are unable to receive necessary information and support. However, sexual characteristics of social support for male and female caregivers in Japan are not clear. The purpose of this study is to understand the characteristics, and to examine how to support the family caregivers. Methods: We conducted postal self-completion questionnaires survey by mail for each male and female caregivers in Ishikawa Prefecture. The survey period was from May to October 2018. Question items were about attributes, the attributes of care receivers, Lubben Social Network Scale-6 (LSNS-6 Japanese version) and Social Support Survey. The survey was conducted with the approval of the Kinjo University Ethics Review Committee. Results: The subjects of analysis were 251 male caregivers and 399 female caregivers. In LSNS-6 scores, the score in male caregivers was significantly lower than the one in female ones, and the score in the group with poorer economic status, the one in the group with poorer health and the one in the group with no community activities, were significantly lower. In a gender comparison of LSNS-6 scores, the male caregivers were significantly lower than the female caregivers on many items (p<0.01). Conclusions: The survey results suggest that male caregivers have less social support than female ones. This means that the male caregivers who are responsible for caregiving at home are more likely to be lonely and are less likely to receive counseling and support even at the end of life. Therefore, it is necessary to establish a support system to prevent social isolation of the male caregivers.
How is Expert Practice at a Family Systems Care Unit Best Described? A Framework for Reporting
Margrit Hilpertshauser, Barbara Preusse-Bleuler
ZHAW, University of applied Science Winterthur, Winterthur, Zurich, Switzerland
Abstract
Background and Purpose: Expert practice in therapeutic family conversations has been established at the Family Systems Care Unit (FSCU), a real-world clinical lab at a university of applied sciences. The FSCU supports families facing health-related challenges by fostering family strengths through therapeutic conversations. The FSCU invites students and professionals to observe and to engage in these expert-led therapeutic conversations as well as in clinical reasoning about this experience.
As the unit moves towards formal reporting, the question arises: How can expert practice at the FSCU best be described from a practical perspective? The goal is to develop a framework. Models: The Calgary Family Assessment and Intervention Model, the Illness Beliefs Model and the Trinity Model are the clinical models implemented at the FSCU. Method: The clinical team at FSCU adopted an action research approach, drawing on data from family conversations, conversation records and internal team discussions. Results: The emerging framework organizes various elements, including family data, descriptions of expert practice, and additional outputs such as educational materials and collaborative efforts with the research team. For the clinical team, it is essential that the framework extends beyond family conversations themselves: Initial findings suggest that expert practice at FSCU is best understood as a reflexive practice - one that enhances systemic thinking and conceptualization. The framework is further enriched by considerations the diversity in families, family situations and the impact the conversations at the FSCU had on families’ everyday life. Conclusions and Implications: The development of this framework has allowed the team to clearly define and agree on the key concepts guiding the reporting and description of expert practice from a practice perspective.
This framework invites reporting and is encouraging further exploration of practice-based approaches and expert practice to promote family strength globally.
How Do Nurses Record Family Nursing Practice in the Electronic Nursing Chart? The Method of AI-Based Chart Analysis
Junko Honda1, Makoto Tsukuda2,3, Tadamasa Takemura4
1Research Institute of Nursing Care for People and Community, University of Hyogo, Akashi, Hyogo, Japan. 2College of Nursing Art and Science, University of Hyogo, Akashi, Hyogo, Japan. 3Graduate School of Business Administration, Kobe University, Kobe, Hyogo, Japan. 4Graduate School of Information Science, University of Hyogo, Kobe, Hyogo, Japan
Abstract
Background and Purpose: The importance of family nursing is recognized and nurses are involved with the family as well as the patient in their daily nursing work. If nurses do not record their practices in the electronic nursing chart, the fact that they have been carried out will not remain. How do nurses record family nursing practice? Artificial Intelligence (AI) technology has improved and is now able to analyze large amounts of medical record information. This study aims to examine how AI can be used to extract nurses' descriptions of family nursing and to analyze their content. Methods: One hospital's nursing records of 2020 were used to extract descriptions relating to family nursing, and segments of the records were searched for family-related words such as ‘family’, ‘householder’, ‘wife’, ‘husband’, ‘daughter’, ‘son’, and so on. Results: The number of records recorded by the nurses was 82648. Among them, the number of records containing words = [‘eldest daughter’,‘second daughter’,‘eldest son’,‘second son’,‘family’,‘householder’,‘father’,‘mother’,‘grandchildren’,‘daughter-in-law’,‘husband’,‘wife’] was 3936. Descriptions about family members were scrutinized by family nursing experts, categorized into descriptions related to family nursing and others, and subjected to machine learning using Natural Language Processing Models (BEAT: Bidirectional Encoder Representations from Transformers). Conclusions and Implications: By utilizing AI, the content of family nursing practice in the records was successfully extracted. Traditional electronic health records do not consolidate family information, making it difficult for staff to find where family data is located. It was also suggested that many records only recorded whether there were family visits and information from the family, and that there may not be a record of how the nurse engaged with the family or intervened with them.
What Happened to Family Nursing Practice in the Clinical Settings During the Three Years of Family Absence? Comparison Before and After the COVID-19 Pandemic
Junko Honda1, Makoto Tsukuda2,3
1Research Institute of Nursing Care for People and Community, University of Hyogo, Akashi, Hyogo, Japan. 2College of Nursing Art and Science, University of Hyogo, Akashi, Hyogo, Japan. 3Graduate School of Business Administration, Kobe University, Kobe, Hyogo, Japan
Abstract
Background: During the COVID-19 pandemic, family visits were restricted in hospitals and nurses had less contact with families. In the absence of family, nurses were in an effort to contact family members and connect them with patients. Although restrictions on visitation are gradually being eased now, restrictions still exist. This study aimed to determine how the approximately three-year period of family absence affected family nursing practice. Methods: A survey was conducted using a 63-item scale measuring family nursing competencies. The scale was a 7-point Likert scale. The subjects were nurses affiliated with Hospital A, and the survey was conducted in 2019, before the pandemic, and in 2023, after the pandemic, and the differences were evaluated. Results: Responses were received from 251 respondents in 2019 and 201 in 2023. When compared to the family nursing process, no significant differences were found in information gathering, assessment, planning, implementation, and evaluation. By item, the scores for ‘obtaining family information’ and ‘supporting family members to express their thoughts’ were significantly lower in 2023 than in 2019. On the other hand, scores for ‘understanding the family structure’ and ‘assessing the family as one unit’ increased significantly. In addition, with years of nursing experience, the scores of young nurses did not decrease, while the scores of experienced nurses decreased extremely. Conclusions and Implications: There was an impact on nurses' family nursing competencies before and after the pandemic. We can imagine that in the absence of family, it was difficult to obtain information from them and to provide direct support. While the scores of young nurses did not drop, the extreme drop in the scores of experienced nurses indicates that the generation that knows about direct involvement with family members has lower self-evaluations.
Mother-Baby Interaction Therapy via MommaConnect: A Digital Healthcare Platform to Promote Quality Mother-Infant Interaction and Decrease PPD
June Andrews Horowitz1, Bobbie Posmontier2, Pamela A. Geller3, Mary McDonough1, Mona Elgohail4, Kayla Alvares PhD student1, Jessica Beneway5, Nora Medina5, Yiqi Wang4, Katie Chang6, Tony Ma6
1University of Massachusetts Dartmouth, Dartmouth, Massachusetts, USA. 2Hunter-Bellevue School of Nursing, New York, New York, USA. 3Drexel University, Philadelphia, Pennsylvania, USA. 4Benten Technologies, Manassas, Virginia, USA. 5Thomas Jefferson University, Philadelphia, Pennsylvania, USA. 6Benten Technologies, Manasses, Virginia, USA
Abstract
Background and Purpose: PPD affects up to 20% of women worldwide. Unfortunately, PPD can have adverse effects on the mother-infant relationship that may contribute to lifelong cognitive, emotional, and psychosocial challenges among children into adulthood. Although treatment of PPD reduces symptoms of depression, it does not repair the adverse effects of maternal PPD on the infant. The purpose of this presentation is to describe Mother-Baby Interaction Therapy (MBI) delivered via our digital platform, MommaConnect, as a novel evidence-based clinical approach to address this problem and improve family health. Methods: The rationale for MBI is to improve mother-infant interaction by teaching mothers about infant development, helping mothers to interpret infants’ engagement/disengagement behavioral and communication cues, coaching mothers to modify withdrawn/intrusive behaviors through clinician modeling and in-vivo coaching strategies, and providing support and encouragement. The approach to MBI delivery has been adapted from in-person care to our digital platform delivery system, MommaConnect. This digital approach, which can be culturally tailored, increases access and provides visual reinforcement of baby cues and behaviors and allows women to upload mother-infant interaction videos for feedback from the therapist. MBI outcomes are evaluated via qualitative patient feedback, Coding Interactive Behavior (a validated observer-rated evaluation system for coding video-recorded interaction), and the Maternal Postnatal Attachment Scale. Conclusions and Implications: Digital platform delivery of MBI via MommaConnect is an innovative approach that can be culturally tailored to improve access to care and augment therapy for PPD and improve the quality of mother-infant interaction. Future development of this digital platform has potential to increase the global reach of a culturally-tailored intervention to improve maternal-child mental health outcomes and family health.
Global Implications of MommaConnect, A Digital Healthcare Platform to Reduce PPD and Improve Mother-infant Interaction
Bobbie Posmontier1, June Andrews Horowitz2, Pamela A. Geller3, Mary McDonough2, Mona Elgohail4, Kayla Alvares PhD student2, Jessica Beneway5, Nora Medina5, Yiqi Wang6, Katie Change4, Tony Ma4
1Hunter-Bellevue, New York, New York, USA. 2University of Massachusetts Dartmouth, Dartmouth, Massachusetts, USA. 3Drexel University, Philadelphia, Pennsylvania, USA. 4Benten Technologies, Manasses, Virginia, USA. 5Thomas Jefferson University, Philadelphia, Pennsylvania, USA. 6Benten Technologies, Philadelphia, Pennsylvania, USA
Abstract
Background and Purpose: Globally PPD affects approximately 20% of postpartum women. Stigma, healthcare inequities, poor access, and childcare and transportation challenges prevent many women and their infants from obtaining treatment for PPD and related sub-optimal mother-infant interaction. These barriers may escalate for women facing adverse social determinants of health including cultural and economic conditions. Current evidence supports digital healthcare interventions as convenient, cost-effective, and accessible. A culturally tailored digital healthcare platform has potential to address health disparities and improve health outcomes for families, and particularly women and their infants globally. This describes the development of MommaConnect, a digital healthcare platform to augment PPD and mother-infant interaction focused treatment. MommaConnect can be culturally tailored to women experiencing PPD and their infants to facilitate access to treatment. Methods: We used a co-creation /mixed methods design in the US guided by the PRECEDE PROCEED Model with focus groups, clinician interviews, and surveys. Development involved multifactor assessment, implementation, and process evaluation. Usability evaluation included the System Usability Scale (SUS). Qualitative data were analyzed via content analysis and SUS data were analyzed with descriptive statistics and application of benchmarks. Results: We elicited women’s view concerning preferences (e.g., easy access, convenience), barriers (e.g., stigma, poor access, cultural factors) and motivators (e.g., desire to be good mothers). SUS scores (M = 91, SD=10.1) showed strong acceptability/usability. Overall, participants endorsed the initial design and functionality and contributed to ongoing MommaConnect development. Conclusions and Implications: MommaConnect holds promise to provide accessible delivery of PPD and mother-infant interaction treatment. Its development and subsequent testing have potential to improve family health outcomes and inform policy initiatives globally.
Protocol for a Qualitative Study Exploring Family Members’ Perspectives on Experiencing a Significant Life Event
Mari Ikeda1, Iori Sato1, Mayumi Morisaki-Nakamura1, Miyumi Muramoto1, Shizuho Hori1, Yui Shimoyama1, Noyuri Yamaji2
1Department of Family Nursing, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo, Tokyo, Japan. 2Institute of Clinical Epidemiology, Showa University, Shinagawa, Tokyo, Japan
Abstract
Background and Purpose: Families encounter crises during their developmental stages, which heightens their vulnerability. Consequently, comprehensive nursing care that targets the entire family is essential to mitigate the impact of life events. Understanding the trajectory of family members’ acceptance, transformation, and recovery is crucial. Research on crisis response often focuses on individuals rather than the family unit, leaving the trajectory of family members’ perceptions and their discordance unclear. This study outlines a qualitative research protocol to explore the experiences and perspectives of family members confronted with significant life events. Methods: Family dyads who have experienced significant life events (e.g., first-time parenthood, childhood cancer diagnosis, congenital heart disease) will be recruited through hospital follow-ups and daycare centers. Five to ten dyads will be interviewed separately using Clinical Ethnographic Narrative Interviews (CENI), a 90-minute semi-structured interview involving social network mapping, body mapping, lifeline, and card sorting. Among these activities, the lifeline facilitates a retrospective overview of distress and identifies linkages between experiences and actions. The card sort references a low point in the lifeline and facilitates the description and organization of physical and psychological feelings. These activities enable participants to describe their interpretations, social significance, and help-seeking actions, thereby identifying their beliefs, meanings, patterns, and processes. The interview guide was modified to identify discrepancies for the purposes of this study. Analysis: A six-phase thematic analysis, following Braun and Clarke’s empirical framework, will overlay the analysis of family members’ narratives to reveal congruencies and differences in perceptions. This inductive approach is grounded in a realist epistemological position and aims to gain fundamental knowledge about the chronology and depth of family members’ perceptions. Conclusion and Implementation: The study will highlight methodological considerations pertinent to qualitative research on family transformation during life events. The findings will inform the development of appropriate family-integrated interventions.
Development of Anticipatory Guidance Materials for Families Attending an Interdisciplinary Prader-Willi syndrome Clinic: A Quality Improvement Project
Ann E. E. Johansson1, Cynthia A. Danford2
1University of Pittsburgh Medical Center Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA. 2Cleveland Clinic, Cleveland, Ohio, USA
Abstract
Background and Purpose: Prader-Willi syndrome (PWS), a rare genetic neuroendocrine condition with lifelong physical, cognitive, and socioemotional symptoms, impacts caregivers and family members. Anticipatory guidance is a vital aspect of family-centered clinical PWS care for education, empowerment, prevention, family interaction and family-provider communication throughout the life course. The aim of this quality improvement project was to develop family-centered anticipatory guidance resources for an interdisciplinary PWS clinic at a tertiary care center. Methods: Life course stages included: newborns (<1 month), infancy (1-12 months), early childhood (1-5 years), school-age (6-12 years), adolescence/young adult (13-21 years), and adulthood (>21 years). For each stage, published healthcare provider-oriented PWS education recommendations and caregiver-oriented resources on the Prader-Willi Syndrome Association USA and International Prader-Willi Syndrome Organization websites were reviewed. Experts at the PWS clinic provided input. Topics were categorized by life course stage and common themes were identified. Anticipatory guidance documents were generated using lay language. Results: Common anticipatory guidance themes throughout the life course include feeding and weight problems (e.g. failure to thrive, obesity), need for family support, and long-term planning. Experts added maintaining primary care, emergency considerations, and research opportunities. Newborn/infant themes are stimulation, early intervention services, and common complications. Early childhood themes are behavioral management, early intervention services, sibling adjustment, and cooperation among caregivers. School-age themes include behavioral management, special education needs, and social development. Adolescence/young adult and adulthood themes include transition of care, psychosexual development, skin care, schooling/vocation training, and psychiatric symptoms. Conclusions and Implications: Anticipatory guidance needs for individuals with PWS and their families vary across the life course. Tailored resources can help empower and support individuals with PWS, their caregivers, and families. Attention to life course needs can benefit healthcare providers in proactively tailoring care for this vulnerable population.
What Was Trauma for Japanese Family Nurses Under the COVID-19 Pandemic? : An Analysis Considering Nurses’ Attitudes Toward Family Nursing
Kiyoko Kamibeppu, Shiho Murayama, Junxia Chen, Akiko Maruyama
International University of Health and Welfare, Graduate School of Health and Welfare Sciences, Minato-ku, Tokyo, Japan
Abstract
Background and Purpose: Nurses who work with families experienced difficulties with providing family care during the COVID-19 pandemic. The purpose of this study was to identify factors associated with posttraumatic stress symptoms (PTSS) among Japanese nurses during the pandemic and to examine the association of the effect of interaction between the factors and nurses’ attitudes toward family nursing with PTSS. Methods: Nurses who belonged to Japanese Association for Research in Family Nursing were recruited for a longitudinal web-based survey. 129 participants who worked in clinical settings and responded to the survey at Time 1 (August-September 2021) were eligible for this analysis. Hierarchical multiple regression was conducted to identify factors associated with PTSS and effect of interaction between the factors and nurses’ attitudes toward family nursing. This study was part of the JARFN project. Results: 44.2% had 10-19 years of nursing experience. Mean PCL-5 score was 30.0±11.6. Multiple regression analysis showed that working with families in which abuse/violence occurred or became exacerbated (β=.236, p=.008) and with families experiencing stigma/discrimination in their community (β=.260, p=.005) were significantly associated with PTSS after controlling for demographic variables. In addition, the interaction between nurses’ awareness of not being able to observe a whole family at a time when patients could not see their family members and attitudes toward family nursing was significantly associated with PTSS (β=.192, p=.031, adjusted R2=.194). Conclusions and Implications: This study identified predictors of PTSS among Japanese nurses during the pandemic. Awareness of not being able to observe a whole family increased stress for the nurses. Furthermore, for nurses who considered family important, this situation alone was considered stressful, even without the awareness of not being able to observe a whole family. Thus, strategies to reduce negative psychological outcomes among nurses who consider family important will be needed.
Verification of the effectiveness of the Fostering Family Program (FFP) for adaptation of parenting in postpartum
MITSUKO KANZAKI
Kanazawa Medical University, Kahoku-gun, Ishikawa, Japan
Abstract
Background and Purpose: In Japan, there are few educational intervention programs from the aspect of family function during pregnancy that promote childcare adaptation in the early postpartum period. The purpose of this study evaluate an educational intervention program (FFP) that promotes adjustment to postpartum childcare life for first time childbirth couples. 2. Methods: The FFP participants and non-participants were surveyed using a self-administered questionnaire five times: before (early to mid-pregnancy), after program participation (late pregnancy), 1 month postpartum, 3 months postpartum, and 6 months postpartum.The survey included the Family Functioning Scale (FFS), Depressive State (EPDS), Parenting Self-Efficacy (PSE), Parenting Burden, Bonding, and Attributes. We examined the associations between variables at different time points in each group, and the comparison of variables between groups, the temporal transition of variables in each group. Results: In the intervention group, there was a significant negative association between EPDS at 1 month postpartum and the emotional bond of family functioning (r=-.380, p<.05) PSE was significantly associated with FFS score (r=.540, p<.01). At 3 months postpartum, there was a significant association between FFS scores and EPDS (r=-4.90, p<.01) and PSE (r=.446, p<.01). In a comparison between the groups, the intervention group had significantly higher family functioning scores in the second trimester of pregnancy and at 1, 3 and 6 months postpartum than the control group. There was no significant difference in EPDS score or PSE between the two groups. In terms of time in each group, EPDS was significantly lower at 6 months postpartum in the intervention group. Conclusions and Implications: In the FFP group, family function was maintained at a high level from pregnancy to 6 months postpartum, and it was predicted that adaptation to childcare life was progressing due to increased child-rearing self-efficacy and suppression of depressive states, suggesting the effectiveness of FFP.
Global Family Nursing Competencies: An International Analysis of Nursing Professional Frameworks
Connie Kartoz1, Teresa Gutiérrez-Alemán2, Norma Krumwiede3, Tammy Nieman4, Donna Marvicsin5, Virginia Jones6, Beth Ammerman7
1The College of New Jersey, Ewing, New Jersey, USA. 2University College Alberta Giménez- Comillas Pontifical University, Palma de Mallorca, Balearic Islands, Spain. 3Minnesota State University, Mankato, Minnesota, USA. 4Minnesota State University, Mankato, Mankato, Minnesota, USA. 5University of Michigan, Ann Arbor, Ann Arbor, Michigan, USA. 6University of Otago, New Zealand. 7University of Michigan, Ann Arbor, Michigan, USA
Abstract
Background and Purpose: As part of a comprehensive and inclusive strategy to update the International Family Nursing Association’s position statements (IFNA’s-PSs), the purpose of this study is to analyze existing country level nursing professional frameworks at the generalist level. Methods: A purposive sample of documents was obtained from a listserv distribution to IFNA members and the listed national nurses’ associations from the International Council of Nurses (ICN). After ensuring inclusion criteria (generalist practice or education level, not focused in specialty area, written in English) were met, the documents were analyzed for content regarding family care. Documents were searched for the keywords: family, caregiver, parent, child, and sibling. Next, the extracted statements were then merged and analyzed using both ATLAS.ti and confirmatory coding of the data. Results: Documents from eight countries were located from four continents (Americas, Europe, Africa and Asia). Mentions of the search terms ranged from 0-19, with 54 unique text units extracted. Auto coding in ATLAS.ti yielded six themes: Competency, Diversity, Evidence Based Practice, Family, Nursing Knowledge and Person Centered Care. Manual content analysis revealed seven themes: Assessment, Family as Unit of Care, Knowledge, Intervention, Families as a Diverse Unit, Preferences of Family, and Communication. Merging the two methods revealed the meta themes: Definition of Family, Skills Required to Care for Family , and Processes for Family Care. There was minimal variability in the themes from country to country. Conclusions and Implications: The results of this nursing professional frameworks initial analysis provide an emerging global understanding of the extent of family care inclusion in nursing practice. To ensure inclusivity and representativeness, additional documents will be collected, analyzed and incorporated into the results. These findings will inform our aim to update the IFNA PSs from an international perspective. Such updates are essential for nurse researchers, educators and clinicians managing evidence-based practices.
Nursing Practice to Empower a Family of a Child With Severe Neonatal Asphyxia until their Discharge: A Case Study to Focus on the Meaning of Care
Tomoko Kato1, Junko Honda2, Yuko Asaoka3, Chiharu Kawakami4, Megumi Yoshida5, Taketo Watsuji6
1SeireiHamamatsu General Hospital, Hamamatsu, Shizuoka, Japan. 2University of Hyogo, Akashi, Hyogo, Japan. 3Nihon Fukushi University., Aichi, Japan. 4St. Luke's International University, Tokyo, Japan. 5Juntendo University, Chiba, Japan. 6Kobe University, Kobe, Hyogo, Japan
Abstract
Background and Purpose: Families who encounter the birth of a child in critical condition are forced to adapt to the situation in a short time so that they can start child-rearing. This study aimed to analyze a nursing practice case in which a certified nurse specialist for family health nursing (FCNS) provided care for a family whose newborn baby had severe neonatal asphyxia. Methods: We used “case study to focus on the meaning of care (CMC).” The data were taken from the nurse's records and texts describing her reflections on nursing care. At analysis meetings attended by the FCNS and co-researchers, the intent and essence of the nursing practice were verbalized and organized with dialogue. The A University Ethics Committee approved this study. Results: During the period when the parents were shocked, in order to allow them to cherish the joyous moment of having a baby, the FCNS tried to be with the family as much as possible. The FCNS held their hands to avoid their feeling being abandoned in the dark, and set up an opportunity for the parents to meet the baby at the right moment. When the parents gradually regained their routine and began child-rearing activities, the FCNS captured the change of the mother's mindset, and arrange family time. During the period when discharge from the hospital was becoming realistic, the FCNS worked with the family to draw a plan that would help them visualize their future life and involved the family in completing this plan on their own. Conclusions and Implications: This family was able to concretely envision their daily life and move forward because she was there with them, synchronizing with the family's experience and maintaining a sense of emotional distance that allowed them to hold hands at all times.
Traumatic Stress Support for Family Members of Persons with Schizophrenia: Scoping Review
Megumi Kawaguchi, Takaharu Hirai, Junko Yotsuya
University of Fukui, Yoshida-gun, Fukui, Japan
Abstract
Background and Purpose: Coping skills training and psychoeducation have been shown to effectively support the families of individuals with schizophrenia. Understanding the illness is crucial for families to reduce their burden. In addition, it is important to support family members themselves, as they often experience traumatic stress. This study aimed to map the literature with a focus on support for traumatic stress in families of individuals with schizophrenia. Methods: The target population, concept, and context were selected based on PRISMA-ScR framework. The focus was on families of individuals with schizophrenia and traumatic stress support, using a review of studies conducted at any institution. Eligible studies were extracted from CINAHL and PubMed between database inception and December 25, 2024. Search terms were “schizophrenia,” “family,” and “traumatic stress.” Two researchers selected and evaluated the studies to be reviewed. They then read and discussed the full text. Disagreements were discussed among the three authors. Results: The search formula generated 133 hits, four meeting the selection criteria, reporting studies conducted in Australia, Japan, and Tunisia between 2006 and 2021. All studies were on the relationship between exposure to violence and trauma. Participants included two parents and two caregivers of individuals with schizophrenia. They showed that experiencing violence by a person with schizophrenia increased the risk of developing post-traumatic stress disorder. One paper selected from the themes and abstracts was excluded from the analysis because the full text was not available. Conclusions and Implications: Only four studies have focused on traumatic stress in families of individuals with schizophrenia, all highlighting the link between exposure to violence and traumatic stress. It is important to focus on the traumatic stress associated with the onset of schizophrenia and examine the current mental health status of the family.
A Concept Analysis of “Family Involvement” from Admission through Discharge Support for Older Adults with Dementia in Acute Care Hospitals
Motoko Kita1,2, Manami Asakura2,3, Ayumi Hosoi3, Mayumi Hamada1,2
1The Jikei University School of Nursing, Chofu, Tokyo, Japan. 2The Jikei University Graduate School of Medicine, Minato-ku, Tokyo, Japan. 3The Jikei University Daisan Hospital, Chofu, Tokyo, Japan
Abstract
Background and Purpose: In Japan, medical cost reduction measures are being implemented against the backdrop of a rapid decline in the birthrate and an aging population; as a result, the length of stay in acute care hospitals is shortening. Support focused on life in the community has been strengthened, from pre-hospitalization and outpatient care to discharge. Although older adults with dementia often find it difficult to provide their own personal information, family members have been shown to possess important knowledge regarding their health, abilities, life, and values. Family members are well positioned to act as advocates and alternatives for decision-making support, having experience and important insights to contribute. However, medical professionals tend to either not fully recognize or overestimate the importance of the family’s role. The purpose of this study was to analyze and clarify the characteristics of the concept of “family involvement” from admission through discharge support for older adults with dementia in acute care hospitals. Methods: Rogers’ concept analysis was used to clarify the characteristics of family involvement in terms of the concepts’ meaning, attributes, context, and scope to identify effective FI-AD programs in acute care hospitals in Japan. Conclusions and Implications: By working to develop a systematized “family involvement from admission through discharge support” (FI-AD) program that promotes effective family involvement in the entire process from outpatient care to discharge in acute care hospitals, it may be possible to improve the experiences and relationships of older adults with dementia, their families, and the nurses who support them.
Myths and Misconceptions of Intimate Partner Violence Among Sexual and Gender Minorities: A Qualitative Exploration
Stefan Kurbatfinski1, Nicole Letourneau1, Susanne Marshall BCYC1, Dawn McBride2, Jason Novick1, Keira Griggs1, Arielle Perrotta1, Morgan Daye3, Carrie McManus4, Kendra Nixon5
1University of Calgary, Calgary, AB, USA. 2University of Lethbridge, Lethbridge, AB, Canada. 3Rowan House, High River, AB, Canada. 4Sagesse, Calgary, AB, Canada. 5University of Manitoba, Winnipeg, MB, Canada
Abstract
Background and Purpose: Intimate partner violence (IPV), referring to different forms of violence or abuse between two or more intimate partners, negatively impacts physical and mental health, performance in various settings, and familial functioning, leading to long-term adverse outcomes. Sexual and gender minority (SGM) people tend to experience similar or greater frequencies of IPV compared to their cisheterosexual counterparts. Stigma and discrimination toward SGM individuals can lead to myths and misconceptions about relationship dynamics, which can contribute to IPV occurrence within the community. This study sought to: (1) develop a compendium of myths and misconceptions that SGM individuals exposed to IPV and relevant service providers encountered; (2) describe the impacts of these myths and misconceptions on SGM individuals experiencing IPV; and (3) make recommendations to address myths and misconceptions. Methods: This qualitative study used data from a larger project focused on SGM IPV where SGM individuals who experienced IPV (n=18) and service providers who supported SGM individuals experiencing IPV (n=8) were interviewed using semi-structured formats. Thematic content analysis and inductive approaches were used to identify and organize findings into themes and subcategories. Results: All SGM participants experienced unique IPV myths and misconceptions based on their identity, founded on gendered biases. Myths and misconceptions related to body image, race, religion, and consent further complicated SGM individuals’ IPV experiences. Many participants hesitated to seek support, received inadequate support, or behaved differently in their relationships due to encountered myths and misconceptions. Conclusions and Implications: This study appears to be the first comprehensive compendium of myths and misconceptions that SGM people and relevant service providers have encountered regarding SGM IPV. Findings have direct relevance to service provision quality in public health, family, and social services supporting SGM individuals experiencing IPV. Eliminating harmful IPV myths and misconceptions can promote support seeking by, and service delivery to, SGM individuals experiencing IPV, thereby promoting healthier familial functioning.
The Evaluation of a Domestic Abuse Response Team Program in an Emergency Department
Stefan Kurbatfinski1, Nicole Letourneau1, Mayara Alves Luis2, Jennifer Conlin3, Michelle Holton3, Ronnie Biletsk3, Robynne Hanrieder3, Julie Hansen3, Barbara Barber4
1University of Calgary, Calgary, Alberta, Canada. 2Federal University of Espirito Santo, Vitoria, Brazil. 3Alberta Health Services, Calgary, Alberta, Canada. 4Sagesse, Calgary, Alberta, Canada
Abstract
Background and Purpose: Domestic abuse (DA) such as family violence occurs globally and increases the lifelong risk of mental and physical health sequelae, poor socioeconomic attainment, and relationship concerns. While children, mothers, and seniors experience more vulnerabilities to DA victimization, all family members are negatively affected. DA survivors often refrain from seeking support for various reasons (e.g., fear of, or monitoring by, the abuser), but health centers such as emergency departments (EDs) can facilitate survivors’ disclosure and subsequent intervention. The Domestic Abuse Response Team (DART) is a program working collaboratively with a regional hospital center in Alberta, Canada, providing immediate, expert, and patient-oriented services such as safety plans, to DA survivors within the ED. This study aimed to evaluate the DART program by: (1) using administrative data to characterize ED and DART patient characteristics and (2) examining staff perceptions about DART’s operations, effectiveness, challenges, and improvements. Methods: A mixed-methods approach was used to collect data from April 2019 to March 2020. Quantitative data consisted of descriptive statistics on patient and staff characteristics and qualitative data were collected through two surveys to determine perceptions of the DART program. Results: Approximately 60% of ED patients were screened for DA and 1% were referred to DART, of which 87% were female. All referrals received support within an hour and were provided patient-oriented assistance. Qualitative data revealed that the DART program offers important support to DA patients, increases comfort around dealing with DA, and decreases ED staff workloads. Conclusions and Implications: DART offered numerous different services to DA survivors ranging from housing to psychiatric support through a needs-based approach, while also increasing ED staff’s confidence in supporting those harmed by DA. Although most DA survivors declined DART referral, initiating the discussion in EDs can trigger DA patients to reflect on their experience and eventually seek help, promoting familial health.
Challenges Parents Who Raise Children Who Have Experienced Childhood Cancer Face During The Transition To Adulthood
Hiromi Kuwata, Satoko Nagata, Yuki Kumagai, Takashi Taga
Shiga University of medical science, Otsu city, Shiga prefecture, Japan
Abstract
Background and Purpose: We conducted an interview survey to clarify the challenges parents face at various milestones in their children's growth, the concerns they have about their children's future, and the support they seek. We examined the ideal transitional support for parents and families who raise children who have experienced childhood cancer. Methods: We interviewed five caregivers of children who have experienced childhood cancer and analyzed the results using a qualitative descriptive method. The age at which childhood cancer developed in each child was early infancy and early school age. Even now that the children are high school students, they are still regularly visiting the pediatric outpatient clinic for follow-up care. Results: Nine categories were extracted for the challenges and transitional support faced by parents who raise children who have experienced childhood cancer including: “Worried about informing their child”, “Confused by the stress response of their sibling who is left out”, “Supporting their child to receive effective treatment”, “Anxiety about raising a child with pediatric cancer and the future”, “Considering the future according to the child's condition”, “Wanting that the child will be able to live a safe school life”, “Wanting to continue being treated by a trusted pediatrician”, “Child's positive feeling that they have overcome the disease”, and “Wanting a transition that includes the child's personality”. Conclusions and Implications: None of the parents actively wanted to transition to adult medicine. They wanted to be treated by a pediatrician they had been familiar with since childhood. Their children were regularly followed up at the pediatric clinic, and the parents did not want to change that environment. It was thought that independence for parents and children was a major challenge.
Shiga Prefecture Childhood Cancer Consultation and Support System Development Project
Satoko Nagata1, Hiromi Kuwata1, Takashi Taga1,2, Maki Shirasaka1, Yuki Kumagai1
1Shiga University of medical science, Otsu city, Shiga prefecture, Japan. 2Shiga University of medical science Hospital, Otsu city, Shiga prefecture, Japan
Abstract
Background and Purpose: The Shiga Prefecture Childhood Cancer Consultation and Support System Development Project (hereinafter referred to as this project) was launched in April 2020. This project was launched in response to the need for timely and appropriate information provision and consultation services. The purpose of this project is to build a consultation system that can respond to a wide range of needs related to medical treatment and support children and their families who are cancer patients and young adults so that they can live with peace of mind. Methods: This project is implemented based on three pillars: "specialized consultation," "training for practitioners," and "coordination meetings." "Specialized consultation" is conducted to support families raising children with pediatric cancer, "training for practitioners" is conducted by holding workshops and lectures to deepen knowledge and interest in the disease and support methods, and "coordination meetings" are held to share information among members and discuss support activities. Results: In the specialized consultation, parents who have experienced childhood cancer and mothers undergoing treatment consulted on matters related to children's cancer treatment and the mindset required to raise a child with pediatric cancer. Lectures were held twice a year online, with topics such as "High school education during medical treatment," "Job hunting for childhood cancer survivors," and "The latest in childhood cancer treatment." Information was shared with families at coordination meetings, and awareness activities were held by participating in events related to childhood cancer. The project's efforts were also disseminated on the website and at events. Conclusions and Implications: These days, information is readily available online, so families raising children with cancer are faced with too much information to choose from. It seems necessary to continue spreading the correct understanding of childhood cancer to prefectural residents and related organizations, and to disseminate information about the project's efforts.
Exploring the Role of Artificial Intelligence in Supporting Family Caregivers of Dementia Patients: A review
Wai Hang Kwok1, Guanjin Wang2, Davina Porock1
1Edith Cowan University, Joondalup, WA, Australia. 2Murdoch University, Murdoch, WA, Australia
Abstract
Background and Purpose: Dementia significantly impacts families, particularly caregivers, who bear the responsibility for daily management and emotional support. This review explores the potential of AI tools, such as decision support systems, chatbots, and monitoring technologies, in enhancing the decision-making capacity, emotional resilience, and care management efficiency of family caregivers for dementia patients. Methods: A scoping review was conducted to identify empirical research on AI technologies designed to support family caregivers of dementia patients. A systematic search of scientific databases including PubMed, Scopus, and Web of Science was conducted in August- September 2024. The review focused on studies involving AI-based interventions such as virtual assistants, machine learning algorithms, and behaviour tracking systems. Data was extracted on the types of AI technologies, caregiver roles, intervention purposes, caregiver outcomes, usability, and methodological designs. Results: A search identified 77 studies on AI technologies supporting dementia caregivers. After title and abstract screening, 36 were included, with 10 selected for full-text screening. AI technologies demonstrated considerable promise in supporting caregivers through enhanced decision-making, real-time behavioural monitoring, and emotional support. AI-driven decision support systems facilitated better care management by providing timely, data-driven insights, while chatbots and virtual companions helped reduce caregiver stress and provided emotional support. However, barriers to adoption, such as trust in AI and usability concerns, were noted. Facilitators of successful AI implementation included co-development with caregivers and intuitive design. Conclusions and Implications: AI technologies hold significant potential to strengthen the role of family caregivers in dementia care, offering solutions to improve decision-making, emotional well-being, and daily care management. However, overcoming barriers related to trust and usability is crucial for successful integration. Future research should focus on refining AI tools through co-development with caregivers to ensure broader adoption and efficacy.
Expanding Access to Perinatal Family Support with a Hospital-Based Volunteer Doula Program
Rhonda Lanning
The University of North Carolina at Chapel Hill School of Nursing, Chapel Hill, North Carolina, USA. The University of North Carolina at Chapel Hill Health Center, Chapel Hill, North Carolina, USA
Abstract
Background and Purpose: Doula care is associated with improved health outcomes. Many families do not receive doula support due to the costs of services. This presentation will describe a hospital-based volunteer doula program that has increased access to doula care. The discussion will include a description of successful collaboration between doulas and nurses, unique approaches to doula training, inclusion of services in the operating room and postpartum ward, and client feedback. The aim is to share information and resources to support the global expansion of doula services, especially among families with significant needs during the perinatal period. Methods: Analysis focused on data from surveys designed to evaluate client satisfaction and experience, doula characteristics, doulas’ sense of preparedness following various approaches to training, and feedback from nurses and other members of the healthcare team. Results: From 2012 to 2024, the number of doulas in the program increased from 25 to 110. The annual number of clients receiving care increased from 88 to more than 800 in the same period. Clients reported high satisfaction with care and nursing staff recognized doulas as important members of the team. Doulas’ sense of preparedness was evaluated based on training approaches and findings suggested that doulas trained by the program were as prepared as those trained by international or national training organizations. This presentation will highlight the characteristics of a program that has expanded access to supportive care within a community, especially among immigrant and refugee families and pregnant people experiencing incarceration. The author will provide details about program development and administration. Conclusions and Implications: The inclusion of doulas on the healthcare team can help nurses and other providers meet the diverse needs of families, especially within communities significantly impacted by stressors.
Psychometric Validation of the European Portuguese Version of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) in Depression Contexts
Maria do Carmo Lemos Vieira Gouveia1,2, Eydis Kristin Sveinbjarnardottir3,4, Maria João Barreira Rodrigues1, Rita Maria Lemos Baptista Silva1, Márcia Sílvia Baptista5, Maria Adriana Pereira Henriques6,2
1Higher School of Health - University of Madeira, Funchal, Madeira Island, Portugal. 2Nursing Research, Innovation and Development Centre of Lisbon - CIDNUR, Lisbon, Portugal, Portugal. 3Faculty of Nursing and Midwifery University of Iceland, Reykjavik, Iceland, Iceland. 4School of Health Sciences, University of Akureyri, Akureyri, Iceland, Iceland. 5Regional Directorate for Integrated Policies and Longevity, Regional Government of Madeira Regional Secretariat for Health and Civil Protection, Funchal, Madeira Island, Portugal. 6Higher School of Nursing of Lisbon University of Lisbon, Lisbon, Portugal, Portugal
Abstract
Background and Purpose: Mental illness significantly impacts family functioning, emphasizing the need for valid and reliable instruments to assess therapeutic changes and the effects of family nursing interventions in clinical contexts. This study aimed to linguistically and culturally adapt the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) to European Portuguese and evaluate its psychometric properties. Methods: A methodological, descriptive, and cross-sectional study was carried out in two stages. The first stage involved translation, back-translation, and consensus meetings with experts to ensure content validity. The second stage focused on evaluating the psychometric properties of the instrument through validity and reliability studies, as well as exploratory factor analysis (EFA) and confirmatory factor analysis (CFA), conducted using IBM SPSS Statistics v.24 and SPSS AMOS v.24. A non-randomized sample of 121 Portuguese adults diagnosed with depression and their relatives participated in the study, completing the (ICE-EFFQ). Results: A principal components analysis identified four factors, collectively explaining 55.58% of the total variance. Confirmatory factor analysis demonstrated acceptable model fit indices (χ²/df=1.426, GFI=.871, CFI=.906, RMSEA=.060, RMSR=.087, SRMR=.071), supporting the questionnaire's factor structure. Internal consistency was assessed using Cronbach’s alpha, which indicated satisfactory reliability for the global scale (α =.86) and the four subscales: communication (α=.79), emotional expression (α=.68), problem-solving (α=.71), and cooperation (α=.61). Conclusions and Implications: The findings indicate that the European Portuguese version of the (ICE-EFFQ) is a psychometrically sound tool for assessing expressive family functioning in families with adult members diagnosed with depression. Its sensitivity, validity, and reliability make it a valuable resource for evaluating family functioning before and after clinical interventions, potentially improving therapeutic outcomes in Portuguese family nursing practice. This instrument enables tailored interventions based on each family's specific needs, aiming to alleviate suffering, enhance functioning, and promote or maintain optimal family mental health.
The Alliance against Violence and Adversity: Building a Network of Academic and Community Partnerships to Promote Family Health
Nicole Letourneau1,2 Kharah Ross3, Ashley Stewart-Tufescu4,5, Stefan Kurbatfinski1,2, Sarah Yercich6, Andrea Deane1,2, Susanne Marshall1,2
1University of Calgary, Calgary, AB, Canada. 2Alberta Children’s Hospital Research Institute Owerko Centre, Calgary, AB, Canada. 3Athabasca University, Athabasca, AB, Canada. 4University of Manitoba, Winnipeg, MB, Canada. 5Children’s Hospital Research Institute of Manitoba, Winnipeg, MB, Canada. 6Simon Fraser University, Vancouver, BC, Canada.
Abstract
Background and Purpose: Gender-based violence (GBV) and Adverse Childhood Experiences (ACEs) contribute to significant negative outcomes for individual and family health and social well-being. Although extensive research has established GBV and ACEs as urgent problems, current prevention and intervention strategies have fallen short. Building on evaluation and implementation science, new approaches to training in GBV and ACEs may offer more effective solutions. The purpose of this expert lecture was to describe the Alliance against Violence and Adversity (AVA), a Canadian health research training platform that supports graduate students in community organizations addressing GBV and ACEs. AVA has developed numerous training programs, engages in systematic and multi-faceted knowledge mobilization, and leads a community-engaged implementation science research program. Methods: AVA’s community-engaged training programs including AVA Online, Triadic Mentorship Program (TMP), and Community Agency Internship Program (CAIP) have been developed and partially evaluated. Evaluations of the TMP and CAIP have assessed both scholars/interns’ and agency leaders’ perspectives regarding the scholars’/interns’ roles and responsibilities, challenges encountered, program benefits, overall impacts, and satisfaction. Evaluations were conducted between 2022 and 2024. Results: Pilot findings indicated that AVA’s programs enhance professional development, personal growth, and goal attainment for both scholars/interns and agency leaders, with participants expressing strong satisfaction with the programs. Scholars/interns report increased confidence in adapting to the pace of community-based practice and in working with diverse populations. Agency leaders highlighted how AVA’s programs strengthened their organizations’ capacity to incorporate research, noting that the program provided essential resources to support evaluation efforts and the implementation of services. Conclusions and Implications: The AVA programs foster community agency involvement in research and evaluation, while advancing shared learning on program uptake, dosage, and sustainability. These contributions strengthen service delivery aimed at addressing the widespread challenges of GBV and ACEs affecting families in Canada.
Attachment and Child Health (ATTACH™) Parenting Program: Impacts, Scale and Spread to Promote Healthy Parent-Child Relationships and Development of Children Affected by Early Adversity
Nicole Letourneau1,2, Martha Hart1,2, Kharah Ross3, Ashley Stewart-Tufescu4,5, Steve Cole6, Effy Zhiyuan Yu7, Kendra Nixon4
1University of Calgary, Calgary, AB, Canada. 2Alberta Children’s Hospital Research Institute Owerko Centre, Calgary, AB, Canada. 3Athabasca University, AB, Canada. 4University of Manitoba, Winnipeg, MB, Canada. 5Children’s Hospital Research Institute of Manitoba, Winnipeg, MB, Canada. 6University of California, Los Angeles, Los Angeles, California, USA. 7University of Pennsylvania, School of Nursing, Philadelphia, Pennsylvania, USA
Abstract
Background: Parental reflective function (PRF) – parents’ insight into their own and their child’s thoughts, feelings, intentions, and mental states – predicts more optimal parent-child relationships, and children’s attachment security and development. In contrast, adverse childhood experiences (ACEs), such as exposure to parental depression, family violence, and/or low-income undermine parent-child relationships and children’s healthy development. Further, ACEs have been linked to children’s behavioral and mental health problems and inflammatory diseases. Parenting interventions focused on PRF, such as the Attachment and Child Health (ATTACH™) program, can help families with preschool children vulnerable to negative impacts of past and/or concurrent ACEs. Methods: ATTACH™ consists of 10 weekly sessions with a trained facilitator to support PRF capacity in families facing ACEs. Seven pilot studies using randomized controlled trial and quasi-experimental (QE) designs, were conducted in community agencies assisting these families (n=64). ATTACH™ is also undergoing testing in a large follow-up QE study in similar agencies, as part of scaling efforts across the Canadian Prairie Provinces (n=100). Parents are primary caregivers of children between birth and 5 years of age. Age-appropriate, reliable and valid measures examine outcomes including PRF, parent-child interaction quality (e.g. sensitivity and responsiveness), children’s attachment security, behavior/mental health (e.g. attention, aggression), and development (e.g. communication, social skills), and gene expression linked to inflammation. Results: Pilot data show ATTACH™ significantly improves: (a) PRF (d=.50-.61, OR=1.2), (b) parent-child interactions (d=.34-.95), and children’s (c) attachment security (OR=2.3), (d) behaviour/mental health (d=.50-.98), (e) development (d=.81), and (f) gene-expression linked to downregulated inflammation. Preliminary QE data demonstrate significant improvements in PRF (d=.32-.60); other analyses are ongoing. Conclusions and Implications: ATTACH™ may address intergenerational impacts of mothers’ exposure to early childhood adversity on children’s health and development. ATTACH™ is being adapted to other languages, spread globally in Brazil, Denmark, and France, and tested for Zoom™ online delivery to increase accessibility.
Impacts of Peer Support on Coping and Cortisol Levels for Women Affected by Domestic Violence and Coercive Control
Nicole Letourneau1, Carrie McManus2, Jason Novick1, Andrea Silverstone2
1University of Calgary, Calgary, Alberta, Canada. 2Sagesse, Calgary, Alberta, Canada
Abstract
Background and Purpose: Gendered domestic violence and coercive control are prevalent public health concerns in Canada with dire consequences for survivors. Previous research has shown that chronic stress and HPA axis dysregulation are linked to various health issues, including anxiety, depression, and cardiovascular disease. Peer support groups may address and reduce negative impacts of domestic violence and coercive control on women’s stress, coping, safety, and alliances with social support network members, the focus of this study. Methods: A one-group, pre-test-post-test quasi-experimental study was undertaken to evaluate the effectiveness of Growth Circle, a 14-week peer support program offered at an agency serving women affected by domestic violence in a major western Canadian city. Through convenience sampling, women 18 years and older who experienced domestic violence were recruited and provided data on stress, coping, safety-related empowerment, social support alliances. Thirty-five participants provided all pre-test and post-test data, with a subsample of 14 providing repeated hair samples. Hair was employed to determine stress hormone (cortisol) levels. Results: A significant reduction in self-reported levels of perceived stress and stress hormone levels following completion of the Growth Circle program was revealed. Participants also reported a significant increase in safety-related empowerment and supportive alliances with group members. These findings thereby reveal that peer support can alleviate stress in domestic violence survivors. This program successfully fostered supportive alliances and empowerment, suggesting that peer support interventions can complement professional services in addressing survivors' needs. These findings support the integration of peer-led interventions into family nursing practice, advocating for community-based approaches that complement professional services and enhance survivors' resilience and agency. Conclusions and Implications: This study provides compelling evidence related to the efficacy of the Growth Circle peer support program. Further implementation and research into the Growth Circle program across Canada is recommended, including longitudinal research on the associated health benefits for women affected by domestic violence and coercive control.
Feasibility of a Dyadic Intervention to Support Family and Peer Conversations about Youth Resilience
Wendy Looman, Elena Geiger-Simpson, Nadeen Al-Shakhshir, Donna Eull, Jiwoo Lee
University of Minnesota School of Nursing, Minneapolis, Minnesota, USA
Abstract
Background and Purpose: There is evidence that the act of narrating life experiences may facilitate youth well-being through a sense of coherence, helping a child to find meaning and to identify as a resilient person. Community-based studies are needed to support the development of guided interventions for parent-child and peer-to-peer dyads focused on asset-oriented conversations and coping with normative challenges. The purpose of this study was to test the feasibility of a structured dyadic activity to help parents and youth practice strengths-focused dyadic conversations with youth about resilience. Methods: This study was grounded in the Resilience Portfolio Framework which integrates evidence on resilience, posttraumatic growth, and coping to understand the processes that promote thriving. We used an integrative mixed-methods design with a community-based sample of 54 youth ages 8-17 in dyads with a parent, sibling, or friend. Dyads completed a structured activity to designed to support brief conversations about youth strengths and coping. The activity was structured as a podcast-like interview with the youth as an expert on coping. Audio-recorded interviews were analyzed using deductive coding and integrated with quantitative survey data on internal and external assets, empathy, and perceptions of the dyadic exchange. Results: Most participants rated the activity as helpful, with high levels of concordance within dyads about the value of the activity in helping the child feel heard and supported. Parents of youth with stronger internal and external assets tended to use more effective emotion coaching behaviors and fewer emotion dismissing behaviors with the child. Guiding prompts were useful in helping interviewers draw out strength-focused insights in conversations. Conclusions and Implications: The brief structured dyadic activity is a tool for parents and peers to practice strengths-focused conversations with youth. Implications for family nursing and school-based interventions will be presented.
Family Members’ Perceptions of Compassionate Care across the Continuum: A Scoping Review with Policy Implications
Sonja Meiers1, Kirsten Dieckman1, Meg Lagunas1, Jeanette Olsen1, Rachel Merkel1, Linda Sargent1,2, Lisa Schiller 1, Helena Sumballa1, Debra Jansen1
1University of Wisconsin-Eau Claire, Eau Claire, WI, USA. 2St. Mary's University of Minnesota, Winona, MN, USA
Abstract
Background and Purpose: Compassionate care (CC) skills are central to nursing, yet little is known about when patients and family members (FMs) perceive they have received CC. The purpose of the larger study was to explore nursing strategies that enhance patient and FMs’ perceptions of having received compassionate care (CC), defined as actions taken to address patient or FM needs or diminish their pain and suffering. The focus of this paper is family members’ perceptions of having received CC. Methods: This study followed a scoping review design using Johanna Briggs Institute Methodology. The Arksey and O’Malley Framework was used. Evidence was searched within published and unpublished studies between 2013 and 2023 in relevant disciplinary databases. Articles (n = 1,174) meeting eligibility criteria were included. Studies were those describing responses of FMs to actions of CC provided by nurses across the care continuum. Two researchers reviewed each title and abstract against eligibility criteria and came to consensus on studies to move to full text review, again reviewed by two researchers and consensus was achieved. Data were extracted from full text articles. Data extracted into the study template were study aim, method, nation in which conducted, and strategies of CC. All researchers examined extracted data to determine the resulting categories of CC strategies. Results: Eight studies of the overall sample of 40 studies, representing 12 countries, reported family member perceptions. Qualitative methods were most frequently used. Strategies were: communicating therapeutically; building rapport and connection; practicing competently while engaging and supporting family members; recognizing and relieving suffering; anticipating and meeting needs; and education and sharing information. Conclusions and implications: Development and testing of interventions that implement CC with FMs are needed. Enhancing CC can be done through policies that universally encourage FM engagement and support.
A Family Lens: Using Photovoice to Understand Family Health and Communication in Serious Pediatric Illness
Kim Mooney-Doyle1, Cynthia Howes2, Dayanand Bagdure3
1University of Maryland School of Nursing, Baltimore, MD, USA. 2University of Pittsburgh Medical Center, Harrisburg, PA, USA. 3LSU Health Shreveport, Shreveport, LA, USA
Abstract
Background and Purpose: Needs of siblings and parents of children with serious illnesses are under-researched and often unaddressed leaving clinicians with little guidance on how to best support them. The aim of this study was to describe the needs of siblings and parents of youth with serious illness and their desired support. Methods: We used Photovoice, a participatory action approach, to collect written and photo narratives from adolescent siblings and parents of youth with serious illnesses. Individual interviews were conducted between November 2020-January 2022, audio-recorded, and professionally transcribed. Transcripts were subjected to conventional content analysis. Results: Ten families enrolled, and five families participated (6 siblings and 6 parents). Three themes emerged. “A cure would help,” in which siblings and parents described similar needs for family health (e.g. accessible care; less invasive treatments; cure for the condition); “Opportunities for family connection,” which describes siblings’ and parents’ desire for opportunities to spend time together and actions taken to nurture family relationships (e.g. time together unrelated to illness; recognition of sibling experience); and “Please see me,” which describes how parents and siblings desire targeted, sensitive psychosocial support is important for families living with serious illness (e.g. counseling; sensitive communication by professionals). Finally, both siblings and parents appreciated how creating the photo-narratives facilitated family communication and self-reflection about sensitive feelings. Conclusions and Implications: Understanding needs and preferences for support among families of youth with serious illness is foundational to feasible, family-focused interventions that support families across settings. Psychosocial screening for families with targeted support, problem-solving activities for parents, and activities such as co-creation of photo-narratives are activities that may enhance family health.
The NASEM Report on Accelerating Progress in Traumatic Brain Injury Research and Care: Recommendations for Families
Helene Moriarty
Villanova University M. Louise Fitzpatrick College of Nursing, Villanova, Pennsylvania, USA. Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania, USA
Abstract
Background and Purpose: On February 1, 2022, the National Academies of Science, Engineering and Medicine (NASEM) in the United States released a consensus report, entitled “Accelerating Progress in Traumatic Brain Injury Research and Care.” The committee of 18 experts conducted a study that gathered input from public and private stakeholders and prepared a 227-page report that examines traumatic brain injury (TBI) research, identifies knowledge gaps, and provides a 10-year roadmap with recommendations for advancing TBI research and clinical care. While progress has occurred during the past decade, many questions remain around the most effective acute, rehabilitative, and long-term care for persons with TBI and their families. The purpose of this report is to provide an overview of the report, with an emphasis on the recommendations specific to families. Results: TBI has a profound impact on survivors and their families. Family members in the public workshops conducted by NASEM communicated common themes around their challenges after TBI, with many reporting they feel alone and unsupported. A body of research has also documented that family members often experience diminished physical and mental health, along with social isolation, unmet needs, and financial distress. And yet, these findings have not been matched with research that develops and tests interventions to support families and family caregivers. Conclusions and Implications: Gaps in knowledge related to families were uncovered such as: interventions to support families during the acute, post-acute, and chronic phases; predictors of physical and mental health of caregivers; and the effects of family engagement in rehabilitation on outcomes for TBI survivors and family members. Recommendations for family-centered care, family education, support, and engagement in care, and interdisciplinary interventions across the continuum of care will be described. In planning studies, patient and family voices should be elicited to address unmet needs and inform research questions.
Utilizing Family Support Groups to Care for Individuals Living with Mental Disorders: Perspectives of Family Members in Malawi
Catherine Titanus Mselema1, Fynes Chikopa1, Moster Chirambo1, Michael Nyirenda1, Zondiwe Banda1, Tionge Msachi1, Gomezgani Shaba1, Geldine Chironda1,2
1Saint John of God College of Health Sciences, Malawi. 2Seed Global Health, Malawi
Abstract
Background: The rising burden of mental health issues prevalence is coupled with limited mental health services and healthcare professionals thus indicating issues of inaccessibility. To curb this, Seed Global Health and St John of God partnership facilitated the formation of mental health support groups in diverse communities of Malawi. Purpose: The purpose of the study was to explore the perspectives of family members regarding caring for mentally ill patients through family support groups. Methods: A qualitative descriptive design and biopsychosocial model were employed. Purposive sampling was used to select 3 family support groups with a total of 31 participants. Data was collected using a focus group guide from family and their respective members living with mental disorders. Each focused group discussion lasted for 1 hour. Content analysis was used to analyze the data collected. Participants ‘s rights were observed and informed consent was sought. Results: The perceived benefits included improved family members' and clients' understanding of mental disorders, enhanced early recognition and management of mental disorders, awareness of client’s rights that reduce stigma and discrimination, promotion of compliance and adherence to medication to reduce relapses, stress, and anxiety management strategies, facilitation of open communication between clients, peer support and financial independence through implementation of support group projects. The identified perceived challenges were stigma and discrimination from other community members, inaccessibility of outreach clinics as they are far away, limited mental health teaching materials, the resistance of clients living with mental disorders to seek help from the healthcare centers in good time, lack of rehabilitation skills and limited financial funding for the projects. Conclusions and Implications: The use of mental health family support groups has been viable, cost-effective, and proven to facilitate the early identification and management of mental health disorders within a resource-constrained context like Malawi.
Program Outcomes and Contributing Factors of a Self-Compassion-Based Program for Expecting Couples: A Realist Evaluation
Miyuki Muramoto1,2, Mari Ikeda1,2
1Global Nursing Research Center, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan. 2Department of Family Nursing, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
Abstract
Background and Purpose: Self-compassion may support a family’s adaptation during the transition to parenthood; however, few self-compassion-based interventions have been implemented specifically for newly expecting couples. Thus, we developed a self-compassion-based childbirth and parenting preparation program (SCPPP) for newly expecting couples and explored their learning experiences, aiming to elucidate the program’s outcomes and individual contexts that may contribute to them. Methods: This pilot study employed a convergent mixed-method approach with a single-arm pre–post intervention of SCPPP. Researchers recruited first-time expecting couples during obstetric check-ups and through snowball sampling in Japan (2022–2023). Participants attended a five-week prenatal and one-day postnatal online program, involving self-compassion meditation and group discussions. Their narratives, psychological measures, and observational data were analyzed using Realist Evaluation, focusing on context-mechanism-outcome configurations. The study was IRB-approved, and informed consent was obtained from participants. Results: Nine couples completed the intervention. Most came from nuclear families (89%), were full-time workers (89%), and had singleton pregnancies (78%). Prenatal outcomes included sureness in staying with oneself, deep self-insights, preparedness for co-parenting, preparedness for parenting, and struggles with mental and physical issues. The postnatal outcomes were activation of psychological resources (e.g., self-compassion), calmness of mind, partial success in staying connected with oneself, inner conflicts owing to parenting challenges, and increased motivation for co-parenting. The Realist Evaluation indicated that over-stressful situations—raising twins, busy work schedules, and inconsistent self-image—may inhibit learning, resulting in partial success in staying connected with oneself and inner conflicts owing to parenting challenges, instead of activating self-compassion. Conclusions and implications: The SCPPP activated self-compassion in some participants and motivated all participants to co-parent. Further studies are needed to refine the program for greater effectiveness in fostering self-compassion and examine its long-term effect on family functioning.
Factors Influencing Family Functioning in Japanese Families with children with Medical Complexity
Hisashi Nakaguchi1, Miku Yamaguchi1, Maki Shirasaka2, Junko Honda3, Kiyomi Harada1
1Kyoto Prefectural University of Medicine, Kyoto, Kyoto, Japan. 2Shiga University of Medical Science, Otsu, Shiga, Japan. 3University of Hyogo, Akashi, Hyogo, Japan
Abstract
Background and Purpose: An increasing number of children are remaining at home and attending school while receiving tube feeding and respiratory management. The rise in nuclear families and dual-earner households in Japan has heightened the need for family support. This study examined the family functioning of families with children receiving medical care, aiming to identify related factors. Methods: A total of 521 children with medical complexity (CMC) resided at home in the two target areas. The questionnaire was distributed to their primary informal caregivers through home visit nurses. Factors were analyzed using the chi-squared test in relation to the subscales of the Family Functioning Scale FACES III: Cohesiveness and Adaptability. Each subscale employs a 4-point scale, with scores of 2-3 indicating balanced family functioning. Results: We analyzed 77 datasets. The mean age was 41.0 years for caregivers and 8.0 years for CMC. The mean scores were 37.2 for cohesiveness and 29.3 for adaptability. Cohesiveness correlated with parental self-efficacy (p=0.004), caregiver burden (p=0.031), and use of home-helper care (p=0.047). Adaptability was associated with parental rest time (p=0.010) and the CRMC being male (p=0.010). Conclusions and Implications: The adaptability scores of participants were comparable to those of healthy families (29.1), while cohesiveness scores were higher (32.0). Respondents adapted family functioning to support CMCs. Assessments should consider not only caregiver burden and parenting self-efficacy but also overall family functioning. Further analysis and targeted nursing interventions are required to enhance family functioning.
Policy And Practice to Support Family Access to Early Years Developmental Health Services in a Disadvantaged Community: A Needs Assessment
Helen Nelson1, Ailsa Munns2, Sharyn Burns2
1Carey Community Resources, Perth, WA, Australia. 2Curtin University, Perth, WA, Australia
Abstract
Background and Purpose: In areas of sociodemographic disadvantage, the challenge of accessing early years developmental health services limits potential for early intervention, increasing intergenerational risk through patterning of neurobiology. This study responds to an internationally recognised gap in sustaining integrated developmental health services for families, informing policy and practice for a community early year’s hub. We report needs assessment and gap analysis, and an initial intervention. Methods: To address the identified gap, we used a multilevel socioecological framework. Our multiple-methods study partnered with local government and community organizations in Armadale, Western Australia, in an area of sociodemographic disadvantage. Informed by community conversation in 2019, the study included: mapping of early years services; a scoping review to identify evidence for policy and practice of integrated community child health services; and thematic analysis of focus group discussions with families and service providers using purposive sampling. Findings were integrated in the needs assessment to inform policy and practice for development of a community hub. Results: Policy priorities to support family access to early childhood intervention included One-place with shared information systems “so that families aren’t reinventing their story over and over again”. Co-design of Culturally safe space, with ownership “shared with the community”. Trained professionals empowering families including supported playgroups, “linking kids to services”. Relational models of care “approaching it from a parent’s concern”. A key-worker for families who experience disadvantage through Poverty and social barriers. Conclusions and Implications: Policy of shared vision and co-design were central to empowering families, reducing barriers of access to support for children’s developmental health concerns. Findings informed development of an initial Play Place intervention, facilitated by a nurse, allied health specialists, early educators, and community workers.
The Overall Structure of Support Practiced by Public Health Nurses for Children with Developmental Disorders and their Families in Urban Areas before School Enrollment
Chiemi Neyoshi
Kinjo University, Hakusan, Japan
Abstract
Background and Purpose: This study aimed to describe the overall structure of the support implemented by public health nurses for children with developmental disorders and their families in urban areas before school enrollment and identify support necessary to enable early intervention. Methods: A qualitative descriptive research design was employed, using semi-structured interviews with five public health nurses in urban areas (designated cities and core cities). The data were analyzed using the M-GTA. Results: An analysis of the data from the perspective of “identifying the support provided public health nurses within the overall structure of support practices” revealed three core concepts: “indirect support”, “follow-up”, and “collaboration.” Five categories were identified: “enhancing interprofessional collaboration”, “facilitating participation in training”, “support through consultation”, “direct follow-up by public health nurses”, and “support related to treatment”. “Indirect support” included “facilitating participation in training” and “support through consultation”. Regarding “facilitating participation in training”, it was observed that emphasis was placed on educating childcare workers so that they could enhance their skills and continuously acquire knowledge, enabling them to effectively support such children in childcare settings to alleviate the burden on families. Conclusions and Implications: In urban areas with large populations and weak social connections, support from public health nurses for early intervention for children with developmental disorders includes “facilitating participation in training” to reduce the burden on families by enhancing the skills of childcare workers at the children’s daycare facilities, thereby creating a support structure that ensures the necessary pre-school support is provided. Additionally, the support structure for early intervention includes indirect support for families including the children and collaboration, alongside public health nurses’ direct follow-up for families and treatment.
Finding Lost Voices: Enhancing Communication with Non-Verbal Children and Young Adults in a Hospice/Short-Break Setting
Diane Nicholson1, Sue Jackson2, Christine English3, Jane Callum3, Amanda Lee1
1St Oswald's Hopsice, Newcastle, Tyne and Wear, United Kingdom. 2retired Northumbria University, Newcastle, Tyne and Wera, United Kingdom. 3Northumbria University, Newcastle, Tyne and Wear, United Kingdom
Abstract
Background and Purpose: Effectively communicating with children and young adults (CYAs) is not only fundamental in provision of good quality child and family-centred care but also acknowledges the rights of all children to express opinions on matters concerning them, and for their voices to be heard. This study explored experiences of multi-agency staff (carers) communicating with CYAs with complex care needs in one hospice/short break setting. Within this service, 84% of CYAs have communication difficulties and many use Augmentative and Alternative Communication devices/techniques (AAC) to support or replace speech. Increasing variety and advancing AAC technologies can be challenging for carers as they deliver complex care for these CYAs and uphold their right to be listened to and heard. Methods: Using a qualitative design, in-depth interviews with purposively selected participants (12 multi-agency carers) explored experiences of communicating with non-verbal CYAs with complex care needs within one hospice/short-break setting. Interviews were digitally recorded, transcribed and thematically analysed. Results: Data uncovered a central theme of lost voices whereby CYA’s messages were often misunderstood or not heard. Three further themes were identified: 1) Multiple and different – carers’ backgrounds, levels of confidence and training; 2) Knowing the child, time – importance of time to get to know the child, building relationships; and 3) Our culture – leadership, differing perspectives, emotional barriers. Each theme has relevance for quality improvement plans to enhance communication with these young patients. Conclusions and Implications: This study demonstrated that successful use of AAC in communicating with these CYAs requires far more than merely skills training. Uncovering the hidden influence of the unit’s culture and emotional barriers on AAC use enabled design of a solution-focused improvement plan for practice that other services could adapt and use.
Nursing Practices Focused on Family Relationships by Specialist Nurses in the ER
Keisuke Nojima, Kanae Hiraoka, Kosuke Kawamura, Noriko Kawahara, Kenya Matsumoto
Kyoto Tachibana University, Kyoto, Kyoto, Japan
Abstract
Background and Purpose: In family care, understanding the relationships between family members is essential. However, families of patients brought to the ER are often in crisis, and ER nurses have limited time to engage with both patients and families, leading to unique family nursing practices. This study aims to clarify the family relationship-focused nursing practices performed by specialist ER nurses. Methods: Web-based interviews were conducted with five nurses: one Certified Nurse Specialists in Critical Care Nursing and four Certified Nurse Specialist in Critical care. They shared memorable family nursing practices, and descriptions reflecting nursing interventions focused on family relationships were categorized. This study received approval from the institutional ethics committee (24-13).
Results: The average age of specialist nurses was 35.4 years (±4.0), with interviews lasting an average of 77.6 minutes (±9.4). The categories identified included: 1) Preventing misunderstandings and conflicts from family members’ mutual "exploration"—nurses intervened to help family members reach mutual understanding and avoid clashes; 2) Breaking the unspoken "You know what I mean?" barrier, unique to Japanese culture—nurses encouraged open emotional expression to break implicit understanding; 3) Uncovering the family’s "true feelings"—nurses guided family members with differing opinions towards a shared direction; and 4) Identifying and addressing "hidden family distortions"—nurses worked with families in the ER to correct underlying dynamics revealed in crises. Conclusions and Implications: It was suggested that ER specialist nurses instantly capture each family member's true feelings, such as values and beliefs, in response to the complex emotions and relational distortions of Japanese families, which are unique to Japan, with their emphasis on syncretism and little sharing of true feelings.In addition, it was presumed that the ER is an environment where time for family care is limited, and therefore, the intervention is conducted concurrently with capturing these feelings.
Impacts of Social Cohesion, Trust, and Stigma on Health Outcomes of Older African Family Caregivers
Uloma Onubogu
University of Massachusetts, Dartmouth, Massachusetts, USA
Abstract
Background and Purpose: Globally, informal caregivers have unmet or worsening health outcomes. Reports have indicated that informal family caregivers stand at increased risk of physical, social, and mental health problems if they lack social cohesion (SoCo). The advancing age of informal caregivers and prevalent co-existing health problems further increase the risk of the adverse impacts of caregiver burden on social engagement. These trends are indicative of the continuing need to increase SoCo in vulnerable caregiver populations to reduce the disparities in health and well-being. In the African regions, informal caregiving has been shown to lack support outside of the household. The feeling of stigma associated with caregiving may damage trust, and consequently social engagement and support. Good SoCo fosters social support, reduces isolation and loneliness, and buffers against harmful health effects. Methods: Secondary data analysis of 205 older caregivers living in Ghana (mean age = 64, SD = 12) was conducted to investigate SoCo as a determinant of caregiver outcomes - subjective well-being (SWB) and self-rated health (SRH). Stigma difficulty and trust were also measured for investigation. Logistic regression analysis was used to examine the main study effects. Results: The majority of caregivers were male, married, living in rural communities, and with no formal education. Most reported good SRH, satisfaction with SWB, no stigma difficulty, and trusted someone. Social cohesion, trust, and stigma were significant factors in determining dissatisfaction with well-being (p<.005), with stigma having a strong impact. SoCo predicted lower odds of dissatisfaction with SWB (B = -0.152, p<.001) with an odds ratio of 0.859 (95% CI [0.803, 0.919]) and accounted for a 14.3% decrease in the odds of reporting poor health. Conclusions and Implications: These findings have implications for policy change to foster connected communities, increase social support, and prioritize social cohesion for older caregivers.
Breaking Barriers: Healthcare Providers’ Views on Improving Access to Perinatal Support for New Dads in Australia
Richard Pascal1, Garth Kendall1, Lesley Kuliukas1, Mary Steen1, Alka Kothari2, Fatch Kalembo1, Rikki Priest3,4,5
1Curtin University, Australia. 2University of Queensland, Australia. 3University of Notre Dame, Australia. 4Cockburn Medical Centre, Australia. 5King Edward Memorial Hospital, Australia
Abstract
Background and Purpose: First-time fathers in Australia and elsewhere face significant challenges and seek support from perinatal services, but engagement is low. New fathers seek programs that are informative and offer peer-based support, but these are rarely developed and properly evaluated. Australian primary care providers, particularly community nurses and midwives, may also engage with new fathers early, but the feasibility and effectiveness of the referral pathway are not established. Methods: The first phase of a formative evaluation of an online, peer-based perinatal program for first-time fathers targeted healthcare providers such as general practitioners, midwives and nurses who worked with perinatal fathers. This research phase comprised a mixed-methods design, with healthcare providers nationally invited to participate in a survey. At the same time, those in Western Australia and Queensland could also participate in semi-structured interviews. Descriptive statistical analyses and reflexive thematic analysis were used. Results: The findings from 141 initial survey responses and 20 interviews included descriptions of first-time fathers as unprepared, distressed, and actively seeking information and support. Providers endorsed a proposed online peer-based program for perinatal first-time fathers. Still, they noted barriers to improved father-inclusive practice, such as sociocultural factors, role-specific constraints, and variations in models of care, practitioners and consumer needs. The research also highlighted that fathers might favour more localised peer-based support, with primary care as a suitable referral pathway. However, engaging healthcare providers through systemic education and policy changes was seen as essential, while addressing the information and support needs of perinatal fathers would require targeting specific moments and settings during their transition to parenthood. Conclusions and Implications: Addressing the unmet needs of perinatal first-time fathers in Australia requires systemic changes, including healthcare provider education and policy reform across primary care and other healthcare settings, alongside localised peer-based support.
Through a Parent’s Eyes: Sibling Contributions to the Complex Care of Children with Disabilities
Christine Platt1, Sally Martens2, DeeDee Long1, Annie Oman1, Emily Keeler1, Michael Robinson1
1Brigham Young University, Provo, Utah, USA. 2University of Louisville, Louisville, Kentucky, USA
Abstract
Background and Purpose: The caregiving role siblings play for children with disabilities is underrepresented in research, despite being common across cultures. While home care minimizes disruptions to family life, the care provided, and its impact remains understudied. Little is understood about known about the extent of sibling caregiving, its effect on family dynamics, and especially how parents perceive and interpret this involvement particularly when siblings are involved in medically complex caregiving. This study explored parental perceptions and experiences of sibling caregiving and provided a description of how caring influences the sibling, the child with a disability, and overall family functioning. Methods: Using a qualitative descriptive study design, parent and sibling (aged 7-17) dyads who live with and care for a child with a disability completed semi-structured interviews focused on caregiving roles, family dynamics, and perceived support. Purposive recruitment enabled inclusion of diverse families. Data was analyzed using content and thematic analysis. Results: Twenty-two dyads participated, with siblings' mean age of 13.5 years. Families represented included those who were: Hispanic, Black, Caucasian, Native American/Alaskan, LGBTQ, and foster care families. Six key themes emerged: companionship, empathy, caregiving, conflict, missed opportunities, and underreporting of caregiving. Parents were proud of the sibling caregivers’ resilience, yet expressed significant concerns regarding the emotional and social burdens placed upon them. All siblings were engaged in complex caregiving despite lacking formal training. A majority of parents felt the siblings’ minimized both the child’s disability and the amount of care the sibling was providing. Conclusions and Implications: The study underscores the vital caregiving role siblings play, the emotional toll they bear, and the lack of structured support as experienced through their parent’s eyes. Further research should focus on developing resources to support sibling caregivers and their families.
Promoting the Development of Cultural Safety for Nursing Students during International Placements: A Family Strengths-Based Approach
Hazel Rands, Elisabeth Coyne
Griffith University, Gold Coast, Queensland, Australia
Abstract
Background and Purpose: Nursing students engage in diverse clinical placements to develop the skills necessary for their future professional roles when working with families. Integral to this training is the ability to work effectively within a multicultural workforce in addition to caring for families from diverse backgrounds. International clinical placements to Laos and Vietnam provide unique opportunities to observe family strengths and connections within remote communities, enhancing final year students' capacity to deliver culturally safe care for vulnerable groups. Methods: Our approach is underpinned by a community development framework reflecting needs-based assessment and self-determination that empowers communities to identify their needs. To ensure that our projects align with community goals, the process begins with in-country discussions and needs analyses to understand local health challenges. Pre-placement workshops focus on a strengths-based approaches to family assessment, health promotion and development of cultural safety, preparing and equipping students to understand cultural norms and engage meaningfully with communities. Results: By placing community needs at the forefront, our placements strive to be beneficial for both students’ learning, and the families they provide care for. Mobile health clinics and health promotion activities are developed based on local need and in conjunction with local health-workers who work alongside our students and academic supervisors to support authentic student learning. Reflection and structured debriefings before, during and after placements foster an ongoing dialogue about cultural awareness, allowing students to discuss their experiences, learn from families, and recognize the strengths within families. Conclusions and Implications: By prioritising a strengths-based approach, family engagement is enhanced and student awareness of providing appropriate and culturally safe care increases. This immersion placement reflects holistic, family-centred care, whilst acknowledging the resilience of families in this setting. This structured approach facilitates positive learning outcomes for students, whilst concurrently building local capacity by strengthening connections between local health-workers and families.
Using a Family Strengths-Based Approach to Support Nursing Students’ Development of Family Nursing Interventions
Hazel Rands, Elisabeth Coyne
Griffith University, Gold Coast, Queensland, Australia
Abstract
Background and Purpose: Few Australian universities teach a stand-alone Family Nursing subject. At Griffith University, a recent curriculum revision offered a redeveloped Family Nursing subject in the undergraduate nursing program. Students complete two assessments based on family case-studies to meet subject learning outcomes. These include application of family assessment knowledge and promotion of family wellbeing through strength-based approaches when using family-centred care (FCC) to partner with consumers. Students are immersed into learning activities during an on-campus teaching intensive, using family case-studies, exploring models of family assessment, family development theory and FCC. Methods (Education Quality Improvement): For the first assessment, students choose a family case-study, identify family structure and consider strengths using the Australian Family Strengths Nursing Assessment Guide. Students identify relevant issues and provide support for the family to develop SMART goals to improve family well-being, recommending and evaluating family nursing interventions to meet those goals. The second assessment is a group task (4 students), where students develop and deliver a 10-minute presentation to their peers, based on a selected family case-study. Students identify a priority area for Australian families, consider current and future impact on their ‘family’ and apply FCC principles to support the family. Results: Providing context for family assessment and FCC through exploration of family case studies during workshops and related assessment tasks supports the development of family nursing skills. Nursing students reported that they had a higher level of understanding of how to partner with families and acknowledged the need to recognise family strengths. For the group-work, students reported appreciated researching FCC together, acknowledging the importance of the perspective of others and sharing their new knowledge with peers. Conclusions and Implications: The opportunity to explore family-nursing interventions in non-clinical classroom settings supports students’ appreciation of inherent strengths within families and develops their confidence in applying FCC principles during clinical placements.
Entering a New Normal with Healthcare Professionals: The Experience of Pregnancy Care Following Successful ART
Caroline René1, Francine de Montigny1, Isabelle Landry2
1Université du Québec en Outaouais, Gatineau, Qc, Canada. 2Université du Québec à Trois-Rivières, Gatineau, Qc, Canada
Abstract
Background and Purpose: Infertility, recognized as a major health issue by the World Health Organization, affects approximately 17.5% of the global adult population, or about one in six people. Owing to technological advancements in the field of assisted reproductive technology (ART), many families now can consider pregnancy and fulfill their dream of becoming parents. However, the unique experience of pregnancy following ART remains largely unknown and often invisible, particularly regarding the partner's experience. This presentation aims to explore the specific challenges of pregnancy care for pregnant women and their partners who have used ART in the context of infertility. Methods: An integrated case study was conducted, adopting a descriptive qualitative approach. Semi-structured interviews were carried out with 21 participants from nine regions of Quebec (Canada), including 13 pregnant women and eight partners (5 men and 3 women) who faced infertility and conceived through ART. The data were analyzed using descriptive qualitative analysis methods. Results: Three main themes emerged from the data analysis: 1) To now be the same as the others; 2) To have specific needs related to the ART journey; 3) To define their place as the other parent during pregnancy care. Conclusions and Implications: Pregnancy resulting from ART represents a paradoxical experience, filled with complex emotions and expectations. Family nurses and other healthcare professionals play a crucial role in adapting their practices to meet the specific needs of these families. A personalized and compassionate approach is essential to improving the quality of prenatal care, supporting parenthood, and strengthening family relationships. Thus, the findings of this study contribute to promoting family strengths through tailored family nursing interventions and enriching knowledge about families’ needs during vulnerable periods, such as pregnancy after ART due to infertility.
Retrospective Evaluation of Integrative Medicine Implemented on a Non-traditional Unit: A Pilot Study
Sandra Rogers1, Brandy Mathews2
1University of Kentucky, Lexington, Kentucky, USA. 2UK Healthcare, Lexington, Kentucky, USA
Abstract
Background and Purpose: Music and massage therapies are routinely utilized in hospitals for patients experiencing pain, anxiety, sleeplessness, and a myriad of other symptoms. The literature has shown that music and massage therapy play a significant role in reducing the utilization of prn pain and anti-anxiety medications. These therapies have been shown to improve patient outcomes in mostly perioperative and oncology specialty settings. This study aimed to show the benefits of these therapies across more non-traditional areas of the in-patient hospital setting. As well as exploring the acceptance of the integrative therapies by a unique patient population within an urban hospital setting. The aim of this pilot study was to observe changes in vital signs; medication requirements; and patient self-reported pain, fatigue, nausea, sleep, depression, and acceptance of therapies surrounding music therapy and massage therapy sessions delivered to hospitalized adults aged 18+ on a 23-bed, complex disposition area of an urban hospital setting. Patients admitted to this unit are often difficult to place due to substance abuse, mental health issues, and lack the support or existence of a supportive family unit. Methods: This pilot study involved a collaborative retrospective chart review partnering integrative medicine and nursing to extract de-identified data covered under the university IRB 45668. Results: The data were used to assess changes pre and post music and massage therapy in a multitude of measurements as well as the acceptance of therapies surrounding music and massage therapies. Conclusions and Implications: A more extensive prospective study to look at the collaboration between nursing and integrative medicine in the care of patients within a non-traditional, inpatient unit will be planned based on these case study results. This unit was awarded the 2023 National Compassionate Caregivers of the Year for the healing environment they have created.
The Relationship Between Nurses' Grief and Family Nursing Practice for Children's End-of-life Care In The PICU
Katsuko Sakamoto, Keiko Ninomiya
Kobe City College of Nursing, Japan
Abstract
Background and Purpose: Children admitted to the pediatric intensive care unit (PICU) often have severe conditions, and despite receiving advanced medical care, some do not survive. The death of a child not only places an emotional burden on their family but also impacts the healthcare professionals involved. Accumulating grief can lead to burnout and turnover. However, in Japan, the grieving and coping mechanisms of PICU nurses have not yet been clarified. This study aimed to determine how the grief and coping strategies of nurses who experienced the end-of-life of a child in the PICU were associated with family nursing practice. Methods: Semi-structured interviews were conducted with PICU nurses to inquire about their feelings of grief resulting from their involvement in end-of-life care and their coping strategies in such situations. This study was approved by the University’s Research Ethics Committee. Results: The relationship with the family leading up to end-of-life care and the family’s words and actions during and after the end-of-life care scene had a significant impact on nurses' grieving process. Nurses provide care to ensure that the final moments for the children and their families are as meaningful as possible. By being present during these final moments, nurses observed the family’s behavior and words, which in turn made them feel validated in the care they provided to the child and family. This validation helped in the process of closure for the child's death and enabled them to move forward. Conclusions and Implications: Being present at the end of life is perceived as one “closure” for nurses, suggesting that being involved in family care during end-of-life care plays a significant role in helping nurses cope with grief.
The Exercise of Fatherhood in the Context of Chemical Dependency
Mara Regina Santos da Silva Dra1, Maria da Penha Rosa Dra2, Kateline Fonseca Msn1, Adriane Silva Gaya Esp.1, Michel Stanik Msn1
1University Federal of Rio Grande, Rio Grande, RGS, Brazil. 2Universidade Federal do Rio Grande, Rio Grande, RS, Brazil
Abstract
Background and Purpose: Alcoholism and illicit drug dependence are conditions that reach high rates among men and have a negative impact on family life and fatherhood, with repercussions that compromise the development of children, especially when they are still children and adolescents. However, there is little evidence about the numerous challenges that these parents face in their attempts to rebuild relationships with their children when they are in the process of living without chemical dependence.
The purpose of this study was to examine, in the discourse of parents with a history of alcohol and illicit drug addiction, the teachings they would like to pass on to their children and the challenges they face in rebuilding parent-child relationships. Methods: This is a qualitative study, which was developed in a region of southern Brazil, where rates of alcohol and illicit drug addiction exceed the national average. The participants are men undergoing follow-up in a Therapeutic Group for Chemical Dependency, which has been in operation for five years, linked to a University Hospital. A total of 15 men are in this group. The data were collected between November 2023 and March 2024 through semi-structured interviews and submitted to thematic analysis. Results: From an intergenerational perspective, the teachings that parents would like to pass on to their children include the need to express affection; having physical contact with their kids; and spend time together on a daily basis to avoid emotional distancing. Among the challenges, the contradictions between the model of parenting in which the participants were raised and the demands of today's society for participatory parenting stand out. Conclusions and Implications: These results draw attention to the distance between parents and children, which is increasingly intensified by conflicts or even through the excessive use of social networks that distances them, even when they are physically present.
Family Resilience: Coping with Childhood Depression
Eduarda Ramis Pontes de Souza, Mara Regina Santos da Silva
Federal University of Rio Grande/FURG, Rio Grande, Rio Grande do Sul, Brazil
Abstract
Background and Purpose: Depression in children and adolescents is a worldwide public health problem, disabling daily activities, affecting quality of life, causing changes in the family and disharmony in the home. However, families that mobilize resources and develop potential to face the challenges become stronger and go on with their lives. This study aims to analyze family resilience in coping with depression in children and adolescents. Methods: A qualitative, descriptive and exploratory study using semi-structured interviews with 26 family members of depressed children and adolescents treated at the Children's Psychosocial Care Center (CAPS-i). The data was analyzed using thematic analysis. Results: Different levels of family resilience are presented, with 3 themes emerging: 1) Strengthened families, who face depression with unity for the sake of the family, using clear and respectful communication, rooted in hope through faith; 2) Functional families, who mobilize themselves to provide care, but there is a change in family roles and consequently an overload on the main caregiver; 3) Fragile families, with previous problems that dissociate their members, reflecting historical conflicts, such as the use of alcohol and other drugs and infrafamily violence, when care occurs it is done inconsistently. It should be noted that the difference between the families is the use of agents that mobilize strength, such as faith, support from extended family and friends, and health support. Conclusions and Implications: Nurses remain distant from care, and are not recognized as a source of support, resulting in a lack of comprehensive care for families, which can have an impact on the permanence of depression throughout the life cycle, or even on the evolution to attempted or completed suicide of these children and adolescents. The aim of this study is to update and make effective specific Brazilian public policies for psychosocial care for children and adolescents.
Evaluation of how Registered Nurses Employed in Tele-Triage Services across Australia Perceive their Nurse–Client–Family Relationship
Preetinder Sarwara1, Pathmavathy Namasivayam1, Lindsay M Smith2,3,4
1University of Tasmania, Hobart, Tasmania, Australia. 2Charles Sturt University, Bathurst, New South Wales, Australia. 3University of Tasmania, Launceston, Tasmania, Australia. 4Edith Cowan University, Joondalup, Western Australia, Australia
Abstract
Background and Purpose: Australia’s Tele-Triage service, Health Direct, provides Tele-Triage Nurse assessment of urgent healthcare requests. Tele-Triage Nurses support all Australian families with accessible, free triage assessment and health information at the time of need and referral to appropriate care pathways. Tele-Triage Nurses engage directly with the person experiencing the health concern and/or family members. The national nurse-led service providing equitable healthcare access to all Australian families is a strength of the Australian nursing profession's engagement with families seeking healthcare support.
Our study measured how Tele-Triage Nurses perceive their relationship with the client and family. Understanding Tele-Triage Nurse’s perception of their relationships may help strengthen family engagement during Tele-Triage Nursing calls. This research study is the first Australian study to explore the Tele-Triage nurse–client-family relationship. Methods: In 2023-2024 a national cross-sectional cohort survey invited Tele-Triage Nurses providing Tele-Triage services through Health Direct across Australia to complete an anonymous survey containing eight demographics, 35-item Nurse Professional Competence Scale, 9-item Family Involvement in Care-Nurses' Perceptions of Outcomes Scale, and four open-ended questions. Results: Content analysis of open-ended questions guided by the Bioecological Model of Human Development identified two strategies informing Tele-Triage Nurse’s engagement with families: active listening and respecting family values and beliefs. Challenges Tele-Triage Nurse’s experience during the consultation include abuse from family members and language barrier. Descriptive quantitative results describing the characteristics of Tele-Triage Nurses relationship with the client and family will be presented. Conclusions and Implications: Tele-Triage Nurses active listening, curious compassionate questioning and listening, and demonstrating empathy over tele-triage consultation facilitate client and family engagement during the brief time of tele consultation. Key Performance Indicators evaluating Tele-Triage Nursing services should include adequate call timings to help create the context that empowers the key outcome of family and client engagement in Tele-Triage Nursing care.
Linking the Unlinked: A Case of Probability Matching for Paired Analyses of Brain-Tumor Patients and their Family Members
lori Sato1, Akemi Tsumura2, Yoshitaka Narita3, Mari Ikeda1
1The University of Tokyo, Bunkyo-ku, Tokyo, Japan. 2Yokohama Children’s Hospice Project, Yokohama-shi, Kanagawa, Japan. 3National Cancer Center Hospital, Chuo-ku, Tokyo, Japan
Abstract
Background and Purpose: We undertook research that focused on quality of life in patients with brain tumors and their family members, where the data from patients and family members (self-report questionnaires) were gathered separately and unable to be matched as belonging to the same family. In the secondary analysis of the research, we aimed to conduct paired analyses. Therefore, we report here the experience of using probability matching techniques for the paired analyses. Methods: The datasets, comprising 136 patients and 103 family members, were obtained from a web survey conducted by the Supportive Care for Brain Tumor Patients study group. Participants provided responses to the EQ-5D-5L (health-related quality of life [HRQL]), K6 (psychological distress), and demographic background information (patient age; gender; residential prefecture; time since their brain tumor diagnosis; category and type of brain tumor; stage of tumor treatment; experience with surgical resection, radiation therapy, and chemotherapy; and commuting time for hospital visits). We calculated Gower’s distance between all possible pairs of participants using the demographic backgrounds. By using a dendrogram, a patient and a family member were considered to belong to the same family only if the patient’s closest match was a family member and the family member’s closest match was the patient. Results: Thirty-nine pairs were extracted as a matched subsample, among which 13 pairs had perfectly matching backgrounds. We could conduct some paired analyses: for example, an actor-partner interdependence model among either the 39 pairs or 13 pairs showed consistent results that psychological distress of family members was associated with the HRQL of their patients (partner effect). Conclusions and Implications: A probability matching technique was feasible and showed robustness in this case. Further validation studies are required to support this methodology. We hope this methodology can be utilized for family-as-a-whole analyses using separate existing databases.
A Pilot Evaluation of a Positive Parenting Program in a Japanese Mental Clinic: A Mixed Study Using a Joint Display
Izumi Sawada, Yuka Harada
Sapporo Medical University, Sapporo, Hokkaido, Japan
Abstract
Background and Purpose: Research on support programs for parents with mental illness is ongoing. We conducted Group Positive Parenting Program (GTP) at a mental clinic to clarify the effect and related factors. Methods: This study used a mixed research method. The participants were six mothers who participated in the GTP at a mental clinic. The GTP consisted of seven weekly 2-hour group work sessions and three 20-minute individual interviews conducted by the clinic staff. A Parenting Scale (PS) and a Depression Anxiety Stress Scale (DASS) were collected before and after the program implementation. Then one month later, qualitative data was collected through one-on-one semi-structured interviews. The mothers were divided into groups according to the cut-off values of PS and DASS after the intervention, the subcategories obtained using qualitative analysis were mapped to each case in a joint display, and the characteristics of each group were compared. Results: Before the intervention, all mothers' PS and DASS scores were above cut-off. After the intervention, they were classified into three groups: group 1 in which both PS and DASS were below the cut-off, group 2 in which only DASS was below the cut-off, and group 3 in which both PS and DASS were above the cut-off. The two mothers in group 3 were all single parents, with a diagnosis of depression and their children ages 9 and older. The subcategories of “isolated parenting” and “unchanging parenting beliefs based on their child growth history” applied only to them. Conclusions and Implications: GTP appears to improve parenting attitudes and stress, but isolation, older children, depressive symptoms, and fixed parenting beliefs were shown to limit its effects. Intervention early in the rearing period and an approach to cognitive characteristics were considered necessary to reduce cognitive fixation. This study was a part of JSPS funded research (23K09982).
Shifting Family Nursing Practices: Global Nursing Stories
Debbie Sheppard LeMoine1, Maria do Ceu Barbieri3, Marilyn Swan9, Jessie Ye1, Nadin M Abdel Razeq4. Beth Ammerman16, Diana Arabiat4, Petra Brysiewicz10, Lucila Castanheira Nascimento7, Li Chi Chiang6, Laurence Di Benedetto8, Junko Honda5, Yuuko Mabrey Johnson11, Virginia Jones2, Vanessa Knewtson17, Norma Krumwiede9, Rita M.F. Leal12, Fernanda Lise13, Katsuko Sakamoto14, Amanda Towell-Barnard15
1University of Windsor, Windsor, Ontario, Canada. 2University of Otago, New Zealand. 3Universidad d Huelva, Portugal. 4University of Jordan, Jordan. 5University of Hyogo, Japan. 6National Defense Medical Center, Taiwan. 7University of Sao Paulo, Brazil. 8Le Cetre Hospitalier Universitaire Vaudois, Switzerland. 9Minnesota State University Mankato, USA. 10University of KwaZulu-Natal, South Africa. 11University of California, Davis, USA. 12University of Aveiro, Portugal. 13Federal University of Pelotas, Brazil. 14Kobe City College of Nursing, USA. 15Edith Cowan University, Australia. 16University of Michigan, USA. 17Minnesota State University, Mankato, USA
Abstract
Background: The global pandemic shaped the IFNA practice committee discussions about members’ global perspectives on the shift in family practices. Providing a way for nurses working with families to share how their practice was impacted during a pandemic supported IFNA’s mission to increase the visibility of global family nursing practices and facilitate exchange that transforms understanding family practices. These recollections provide a personal way to hear and understand stories of IFNA family nurses globally. Methods: Written narratives(stories) were collected from the IFNA practice committee, IFNA members and other global nurses known by IFNA members and students about their pandemic family nursing practice experiences and how they were impacted during the pandemic. An electronic flyer was created by 3 undergraduate nursing students in Canada and Spain and emailed to all IFNA members. Consultation between the practice committee and a communication expert was implemented to guide how the stories were collected. Every person who shared a story provided consent. Results: The project produced a collection of unique narratives from global family practices. The documentation provides a sample of a moment in pandemic history of the international impact that IFNA members and other nurses practicing with families experienced. An E-book is in production. Conclusions and Implications: Through sharing these experiences the global voice for family nursing practices that IFNA represents will become visible worldwide. The critical role that nurses played in transforming understanding of how nurses practice and support family health worldwide is emphasized during a shift in life that the pandemic created.
Effectiveness of New Admit Orientation on Parental Anxiety and Depression among Parents of Admitted Children in Pediatric Ward: A Non-Randomized Controlled Trial
Asha Shetty, Sujata Mohapatra, Sandhya K
All India Institute of Medical Sciences, Bhubaneswar, Odisha, India
Abstract
Background and Purpose: Hospitalization of a child is a paramount factor for anxiety and depression among parents. The new hospital environment, unfamiliar situations, many unknown invasive procedures, and uncertainty of the treatment can generate anxiety and depression among parents. Many healthcare settings routinely do not follow the practice of orienting the parents of hospitalized children. The purpose of this study was to find the effect of new admit orientation (NAO) on hospital anxiety and depression among parents of hospitalized children. Methods: A quantitative case-control trial with sixty participants was enrolled by using a non-probability convenient sampling technique. NAO was the five-day strategic study intervention, and parents were reassessed on day six. HADS scale was used to assess the hospital anxiety and depression, anxiety (HADS-A) and depression (HADS-D), interpreted in three levels: normal, borderline, and abnormal. The institutional Ethics Committee approved the study protocol. Results: In both groups, anxiety and depression were reduced from the day after admission to day six. A significant difference between the pre-test and the post-test scores of anxiety and depression were found as paired t values were 14.966 and 11.017 in the experimental group and 4.574 and 3.550 in the control group, respectively (p<0.001). There was a significant difference between both post-test scores (HADS-A1 to HADS-A2 and HADS-D1 to HADS-D2) of the experimental and control group for anxiety and depression as calculated Z values were 6.054 and 6.121(p<0.05) respectively, which implies the effectiveness of new admit orientation. A positive correlation was found between anxiety and depression as r = 0.761 at p=0.001 among parents of newly admitted children. Conclusions and implications: The parents of children seeking admission to the hospital experience anxiety and depression, which can be managed significantly with the implementation of a new admit orientation plan during their hospital stays.
Parenting Style and Perceived Behavioural Problem of Children of Working Parents in a Tertiary Care Hospital: A Cross-Sectional Study
Asha Shetty1, Yash Gupta2
1All India Institute of Medical Sciences, Bhubaneswar, Odisha, India. 2Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India
Abstract
Background and Purpose: Today’s generation has a growing sensitivity towards infancy, especially when children face impairments. Understanding parenting styles and their impact on children’s social adjustment is crucial. This study examines parenting styles in shaping child outcomes, children’s behavioural challenges, and their interconnectedness. Methods: A cross-sectional study design with a complete enumerative sampling technique was adopted. A total sample of 98 nursing officers was included to assess the variables under the study. The Parenting Style and Dimension Questionnaire and the Strengths and Difficulty Questionnaire were used for data collection. The study was approved by the Institute's ethical committee. Results: Overall 19.38% of the children of the nursing officers had behavioural issues that were thought to be problematic (borderline and abnormal). Regardless of gender, peer problems were disproportionately more prevalent in youngsters, whereas pro-social behavioural problems were found to be the least prevalent. Female children scored more on average for emotional symptoms and peer troubles, whereas male children scored higher for conduct issues, hyperactivity, and pro-social behaviour. The findings integrated a weak positive correlation among the perceived behavioral problems and authoritarian and permissive parenting styles (r= 0.218; p= 0.031 and r= 0.242, p= 0.016, respectively). Parenting style was influenced by sociodemographic factors such as parental role, number of children, and number of siblings, with P-values of 0.026, 0.017, and 0.017, respectively.
Conclusions and Implications: This study suggests that working parents, particularly nursing officers, tend to adopt parenting styles more frequently the permissive or authoritarian styles. A significant proportion of children exhibit behavioral issues which were considered problematic. The peer problem was prevalent in both genders. Perceived behavioral problem was weekly correlated with authoritarian and permissive parenting style. Sociodemographic factors such as parental role number of children and number of siblings were found to influence parenting styles.
International Nurses’ Collaboration in Communities of Interest: Leveraging Family Nurse Strengths and Leadership in Policy Engagement
Lindsay M Smith1,2,3, Karyn J Roberts4, Intima Alrimawi5, Petra Brysiewicz6, Susan M Carr7, Cynthia A Danford8, Barbara K. Giambra9,10, Junko Honda11, Michele Polfuss12,13, Theresa Ryan Schultz14,15, Debbie Sheppard-Lemoine16, Natalie Winter17, Suzanne Feetham18,19
1Charles Sturt University, Bathurst, New South Wales, Australia. 2Edith Cowan University, Joondalup, Western Australia, Australia. 3University of Tasmania, Launceston, Tasmania, Australia. 4NIH-ACMG Fellow in Genomic Medicine Program Management, The American College of Medical Genetics and Genomics, Bethesda, Maryland, USA. 5Georgetown University School of Nursing, Washington, DC, USA. 6School of Nursing & Public Health University of KwaZulu-Natal, Durban, South Africa. 7Northumbria University, Newcastle upon Tyne, United Kingdom. 8Nurse Scientist II, Office of Nursing Research and Innovation, Consultative Staff, Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio, USA. 9Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA. 10University of Cincinnati, Cincinnati, Ohio, USA. 11Research Institute of Nursing Care for People and Community, University of Hyogo, Japan. 12University of Wisconsin - Milwaukee, School of Nursing, Milwaukee, USA. 13Children’s Wisconsin, Milwaukee, USA. 14Division of Emergency Medicine and Trauma, Children’s National Hospital, Washington DC, USA. 15George Washington University School of Medicine and Health Sciences, Washington DC, USA. 16University of Windsor, Windsor, Ontario, Canada. 17School of Nursing and Midwifery, Centre for Quality and Patient Safety in the Institute for Health Transformation, Deakin University, Burwood, Melbourne, Australia. 18Children’s National Hospital, Washington DC, USA. 19University of Illinois Chicago, Chicago, Illinois, USA
Abstract
Background and Purpose: Despite being the largest healthcare profession globally, the voice of nurses is often dismissed or absent in healthcare policy. During the COVID-19 pandemic negative health outcomes escalated exponentially, largely associated with errors in healthcare policy. The voice of nursing was again dismissed. This presentation will describe the experiences, strategies, outcomes, and lessons learned of a recently formed IFNA community of interest (COI) focused on healthcare policy, and demonstrate how to leverage the strengths of family nurses to promote family health outcomes globally. Methods: An invitation to conversations after an expert lecture at IFNC15 (2020), grew into a COI focused on policy. A group of international family nurses, most novices in policy, committed to meeting monthly in January 2022 to explore ways to engage in health policy. We used a shared leadership model, to provide a platform for discussions, peer support, mentoring, resources, and members to gain confidence and skills to engage in policy efforts. Results: An umbrella review of the literature of nurses’ engagement in policy development and a policy toolkit for nurses to provide practical steps for policy engagement were completed and are being disseminated. Research proposals that apply the knowledge gained are being discussed. Group members have shared stories of increased engagement with health policymakers and elected officials. Members report the diverse backgrounds, perspectives, and expertise of participants, shared leadership, inclusiveness, mutual respect, and kindness of this COI contributed to the outcomes and their continued commitment. Conclusions and Implications: The focus on health policy of this COI is novel and necessary for family nurses. The members of the COI were successful in leveraging and building on shared values to develop knowledge, skills, and confidence in policy engagement. This exemplar can be emulated to leverage the strengths of family nursing and contribute to healthcare policy engagement.
Consideration of Educational Methods in Fieldworks in Practices of Community-Health Nursing Diagnosis: Health Activities, Lives, and Health Images of Residents and their Family Grasped by Public Health Nursing Students
Shiho Sone1, Kiyomi Hiko2, Yuki Ohata1, Mayumi Horita1, Masayo Kanaya3, Rieko Terai4, Natsukoi Sugano5, Yoshimichi Hatakeyama6, Sumika Sone7
1Kinjo University Department of Public Health Nursing, Hakusan, Ishikawa, Japan. 2Komatsu University Department of Nursing, Komatsu, Ishikawa, Japan. 3Kinjo University Department of Nursing, Hakusan, Ishikawa, Japan. 4Ishikawa Prefectural Nursing University Department of Nursing, Kahoku, Ishikawa, Japan. 5Himeji University School of Nursing, Himeji, Hyogo, Japan. 6National Hospital Organization Hokuriku Hospital, Nanto, Toyama, Japan. 7Toyama University Department of Nursing, Toyama, Toyama, Japan
Abstract
Background and Purpose: In the subject of community-health nursing diagnosis in department of public health nursing in Kinjo University, students are studying how to collect and assess subjective and objective information from sociocultural, physical and mental perspectives of people living in the community. The study aims to clarify how public health nursing students grasped needs of health-activities, lives and health images of residents and their family, and to consider methods of community assessment in fieldworks and educational methods such as development. Methods: Using worksheets for the survey made by six students, we extracted contents about health- images and living conditions of residents and their family, and classified them. The survey was conducted with the approval of the Kinjo University Ethics Review Committee. Results: 51 codes were extracted from the worksheets. In the targeted area, the students found that the aging rate was high; there were many elderly couples and elderly people living alone, and the elderly living alone were highly conscious of health, As for health problems, they realized elderly’s insufficient disaster preparedness: chronic diseases, diet, dietary restrictions due to underlying diseases, and differences in their family’s food preferences. They also noticed that elderly’s meal was overlooked because of living alone or taking care of the family. Besides, needs of health-activities were opportunities of intergenerational exchange and knowledge or information about disaster preventions and health. Conclusions and Implications: Students assessed how to solve resident’s individual problems and support-activities with the residents via considering their characteristics. They actually put themselves in the community and accumulated interaction with the residents, and experienced local culture, customs and values, etc. Therefore, they seemed to be able to find regional issues. From now on, we want to plan fieldworks which can assess and collect information from various families such as providing opportunities to interact with young generations.
Pediatric Empowerment and Cystic Fibrosis: A Concept Analysis
Aymee Steidl
University of Washington, Seattle, Washington, USA
Abstract
Background and Purpose: Cystic fibrosis (CF) is a progressive genetic condition affecting over 100,000 individuals internationally, with 75% of incident diagnoses occurring by two years old. CF management often relies on complex daily treatment plans, where poor adherence contributes to poor health outcomes, including repeated respiratory infections, pulmonary failure, and death. Empowerment is essential to future engagement with disease management, impacts disease outcomes, and has been applied to transition readiness, but its role in pediatric CF management is not understood. This concept analysis aims to describe pediatric empowerment and its hypothesized role in understanding family management strategies that would improve the quality of life of children with CF. Methods: This analysis follows Walker and Avant's approach to concept analyses and includes defining attributes, antecedents, consequences, a model case, a contrary case, and empirical referents. The Pediatric Self-management Model (PSMM) is a middle-range theory geared at understanding the relationship between factors that influence chronic illness management in children. The PSMM is a family-centered model focusing on the unique factors present in the pediatric population. Results: It is proposed that family functioning may impact pediatric empowerment for children with CF. Future directions for nursing research and practice should include a mixed methods analysis of pediatric empowerment and family functioning for individuals with CF to evaluate family dynamics' impact on shared management and adherence outcomes. Conclusions and Implications: Pediatric empowerment is a novel concept defined as the acquisition of condition-specific knowledge and autonomy through active participation, which includes respectful communication, cooperation, and feedback between the healthcare team, parents, and child with CF, and has not been researched within family nursing science or CF. This analysis addresses a gap in the literature and emphasizes the need for future research in this area.
Current Status of Nursing Care for Families of Foreign Residents with Health Problems in Japan: A Literature Review
Yuki Suzuki1, Yuki Hayashi2, Miku Yamaguchi3, Naho Sato4, Takahiro Seki5, Ikue Aizumi6, Hisashi Nakaguchi3
1Juntendo University Faculty of Health Care and Nursing, Urayasu, Chiba, Japan. 2Home-Visit Nursing Station KOTORI, Obu-shi, Aichi, Japan. 3Kyoto Prefectural University of Medicine, Kyoto, Kyoto, Japan. 4Chiba University Graduate School of Nursing, Chiba, Chiba, Japan. 5Visiting Nursing Station Ichigo no Hana, Sakai, Osaka, Japan. 6Iwate Prefectural University Faculty of Nursing, Takizawa, Iwate, Japan
Abstract
Background: The number of foreign families living in Japan and the number of people from diverse cultural backgrounds have been increasing. Consequently, the number of foreigners and their family members receiving medical care has increased, and nurses have more opportunities to become involved. Therefore, the purpose of this study was to clarify the current state of nursing care, especially from the perspective of family nursing, for foreign families living in Japan who are experiencing health problems. Methods: Using the Web version of the Central Journal of Medicine and J-STAGE, literature for the past three years (2020–2023) was targeted using the keywords ‘Foreigner’ AND ‘Family’. Results: Of the 2,344 articles retrieved, eight contained descriptions of nursing practices of nursing professionals with foreign family members. Most excluded references were about foreigners without any health problems. Family nursing practice includes helping family members participate in decision-making regarding foreign patients with health problems and helping family members with treatment-related confusion understand information through the interpretation and translation of documents. Nursing professionals also challenged family members of terminally ill patients to focus on what the patient and family have valued in their lives and take these into account when providing support. Conclusions and Implications: Nurses worked with the families to ensure the smooth implementation of treatment for foreign patients with health problems and were involved in encouraging families to carry out their roles and utilise their strengths. As the number of foreign residents increases, nurses must deepen more knowledge and skills in nursing care for foreign families.
Families Using Day Care facilities for children with SMID (severe motor and intellectual disabilities) in Japan: A Literature Review
Yuki Suzuki1, Seijun Homms2
1Juntendo University Faculty of Health Care and Nursing, Urayasu, Chiba, Japan. 2Shonan University of Medical Sciences, Yokohama, Kanagawa, Japan
Abstract
Background: Children with SMID (severe motor and intellectual disabilities) is defined as a child with an IQ of 35 or less and motor functions ranging from bedridden to able to sit up unassisted. In Japan, the law was amended in 2014 to organize the facilities used by children with disabilities. Due to the development of medical care, the number of children with SMID who stay at home is increasing. Methods: The Web version of the Central Journal of Medicine literature for the past ten years(2014-2024) was targeted using the keywords "SMID" and "day care "and" original article". Results: A total of 30 articles were identified. From these, 14 articles focusing on after-school day services and child development support that also discuss family aspects were selected. 8 references described “the practice and effectiveness of family support,” and 7 references described “the needs of the family.” The support to the family included providing medical care and education to the child, managing the child's physical condition, giving advice, providing information to the family, and interacting with other family members. The “family needs” included support for the family's wishes in accordance with the life stages of the child and family, reduction of the burden of caregiving, and opportunities for the parents to work. Conclusions and Implications: Although support is being provided to meet the needs of families, further consideration needs to be given to reducing family burdens and supporting employment opportunities for parents.
Promoting Strengths in Nurses and Families when Implementing Family Nursing into Clinical Practice at a Rural Hospital
Eydis Kristin Sveinbjarnardottir1,2,3, Snaebjorn Omar Gudjonsson4, Aslaug Felixdottir4
1University of Iceland, Reykjavik, Iceland. 2Landspitali University Hospital, Reykjavik, Iceland. 3University of Akureyri, Akureyri, Iceland. 4Akureyri Hospital, Akureyri, Iceland
Abstract
Background and Purpose: Research has shown that family nursing in clinical practice can increase positive attitudes in nurses, increase wellbeing of families and at the same time give benefits to the recovery of patients. The purpose of this study was to explore the attitudes of nurses and midwives towards families before, during and after implementation of Calgary family nursing models at a rural hospital. Moreover, the illness beliefs and family support of families will be explored as well. Methods: Nurses: A quasi-experimental intervention study with the sample of 145 nurses was conducted without a control group comparing nurses’ attitudes (FINC-NA) before, during and after implementation of the Calgary family nursing models. Qualitative semi-structured interviews were conducted with 9 liaison nurses who were the leaders in strengthening the family nursing methods on their units. Families: A quasi-experimental intervention study is ongoing without a control group comparing illness beliefs (FIBQ) of the families before and after they received Calgary family nursing and family perceived support (FPSQ) will be measured after. Results: The main result when comparing nurses’ attitudes towards the importance of families in their care (FINC-NA) before and after implementation of Calgary family nursing was statistically significant (p=0,002). One of the themes from the interviews with the liaison family nurses was that the nurses on their units expressed “Longing for more support, mentoring and education” to be able to involve families into their nursing care. The data collection of the family part of this study will finish at the end of December 2024. Conclusions and Implications: Although the family nursing implementation made the nurses more positive in their attitudes towards families, they still expressed that they needed more strength to involve families in their care. Strengthening nurses to include families in their care continues to be a challenge in nursing practice.
The Usefulness of the Family Perceived Support Questionnaire in Mental Health Services: A Systematic Literature Review
Eydis Kristin Sveinbjarnardottir1,2,3, Erla Kolbrun Svavarsdottir1,2
1University of Iceland, Reykjavik, Iceland. 2Landspitali University Hospital, Reykjavik, Iceland. 3University of Akureyri, Akureyri, Iceland
Abstract
Background and Purpose: The Icelandic Family Perceived Support Questionnaire (ICE-FPSQ) was developed and psychometrically tested in the years 2007-2012. The questionnaire measures perceived support provided by nurses and healthcare professionals. The ICE-FPSQ is a 14-items two factors questionnaire, measuring families Cognitive support (five-items) and Emotional support (nine-items). For over a decade it has been translated and psychometrically tested in variety of health care settings. The purpose of this systematic literature review is to present results on findings where the ICE-FPSQ has been applied in different studies and in different cultures – where the focus is on family support in in mental health and substance abuse services. The following research questions were proposed: (a) Has psychometrically testing of the ICE-FPSQ into other languages supported the psychometric properties of the instrument? (b) What are the main results in studies using the ICE-FPSQ in mental health research? (c) What are the results indicating about perceived support among families in mental health? Methods: The Calgary Family Assessment and Intervention Models were employed as the framework. The literature search is undergoing but the search will be conducted in Psychlit, Chinal and in the Pubmed databases. Studies published between 2014-2024 will be evaluated. Every article will be assessed by two nurse experts, i.e., in research and in advanced practice mental health nursing according to the inclusion criteria of the study. Results: The results of the systematic literature review will be presented according to the Johanna Brigs Institute requirements. Research questions will also be presented, reflected upon, and discussed. Conclusions and Implications: When developing family-focused services in mental health and substance abuse it is important to use evidence-based clinical questionnaire like the ICE-FPSQ to explore if the service provided includes cognitive and emotional support to families.
Views of Families Supporting Patients with Chronic Respiratory Disease Requiring Home Oxygen Therapy
Rika Tonami1, Miyuki Sato2
1University of Fukui, Faculty of Medical Sciences, Yoshida-gun, Fukui, Japan. 2Niigata University, School of Sciences, Faculty of Medical Sciences, Cyuuouku, Niigata, Japan
Abstract
Background and Purpose: This study aims to clarify the views of families of patients with CRD requiring home oxygen therapy (HOT). Methods: This study used a qualitative descriptive approach. Participants were families of patients diagnosed with chronic respiratory disease (CRD) who were either planning to introduce HOT or had already done so. Semi-structured interviews were conducted using an interview guide. The study was approved by the Ethics Review Committee for Medical Research at the University of Fukui (Approval No.: 20170195) and followed ethical guidelines. Results: The study included nine participants including four with a spouse as the patient and five with a child as the patient. Among the patients with CRD, seven were diagnosed with chronic obstructive pulmonary disease (COPD), and two with interstitial pneumonia (IP), including idiopathic IP. Analysis of the interviews identified 326 codes representing the views of families of patients with CRD. These codes were organized into 32 subcategories and ultimately consolidated under nine categories. The views of families regarding the disease and respiratory symptoms revealed that families of patients with COPD perceived the onset of the disease as "inevitable owing to the patients' history of smoking”. Similarly, families of older patients regarded complaints of respiratory distress as "unavoidable owing to aging." These views suggest that families generally accepted the onset as inevitable due to past lifestyles and health conditions. Conclusions and Implications: The results suggest that healthcare providers, from the time of a CRD diagnosis, need to consider potential changes in symptoms and end-of-life care, while considering the stages of crisis and disability acceptance.
“VID-KIDS” Video-Feedback Interaction Guidance for Depressed Mothers and their Infants: Results of a Randomized Controlled Trial
Panagiota Tryphonopoulos1, Deborah McNeil2, Monica Oxford3, Cindy-Lee Dennis4, Jason Novick5, Andrea Deane5, Kelly Wu5, Stefan Kurbatfinski5, Keira Griggs5, Nicole Letourneau5
1Western University, London, Ontario, Canada. 2Alberta Health Services, Calgary, Alberta, Canada. 3University of Washington, Seattle, Washington, USA. 4University of Toronto, Toronto, Ontario, Canada. 5University of Calgary, Calgary, Alberta, Canada
Abstract
Background and Purpose: Postpartum depression (PPD) affects 15% - 20% of mothers in developed countries. Untreated PPD has negative consequences, including undermining parent-child interaction quality and infant development. VID-KIDS, a positive parenting program comprising three brief nurse-guided video-feedback sessions (in-person or virtual), promotes “serve and return” interactions by helping mothers improve sensitivity and responsiveness to infant cues. We examined VID-KIDS’ impact on maternal-infant interaction and secondary outcomes, including maternal mental health, parenting stress, infant development, and cortisol patterns. Methods: A randomized controlled trial (n=145) compared the VID-KIDS program to controls. Participants were recruited from Alberta Health Services Public Health Clinics during infants’ (aged 2-6 months) vaccination appointments, with eligibility determined by Edinburgh Postnatal Depression Scale (EPDS) scores above 12. The intervention group received three (45 - 60 minutes) video-feedback sessions conducted at 3-week intervals. Outcomes were assessed at baseline, nine weeks post-randomization, and two months post-intervention. Measures included the Parent-Child Interaction Teaching Scale, EPDS, State-Trait Anxiety Inventory, Parenting Stress Index-Short Form, Ages and Stages Questionnaire, and infant salivary cortisol. Independent and paired sample t-tests evaluated between-group differences and within-group changes over time. Results: Maternal-infant interaction quality significantly improved for the intervention group with moderate to large effects. At post-test, the intervention group demonstrated improved sensitivity to cues (p < .001, d = .62), cognitive growth fostering (p < .001, d = .78), and total caregiver/child (p < .001, d = .63) scores. Improvements persisted through delayed post-test, with mothers demonstrating higher sensitivity to cues (p = .006, d = .48), cognitive growth fostering (p = .001, d = .55), and caregiver/child total scores (p = .019, d = .44). No significant differences were detected for secondary outcomes. Conclusions and Implications: This trial demonstrates that VID-KIDS improves maternal-infant interactions for mothers experiencing PPD, offering a promising approach to supporting early parent-child relationships.
Nursing Practice for Family Members in Emergency Departments in Japan: A Scoping Review
Makoto Tsukuda1, Keisuke Nojima2, Junko Honda3
1Hyogo Medical University, Hyogo, Japan. 2Kyoto Tachibana University, Kyoto, Japan. 3University of Hyogo, Hyogo, Japan
Abstract
Background and Purpose: Families of patients visiting emergency departments often experience significant psychological distress, necessitating nursing interventions tailored to their individual needs, such as psychological support, education, and information sharing. While such practices are implemented in Japanese emergency departments (EDs), detailed insights remain limited. This review aims to summarize current practices, identify gaps, and highlight features specific to Japan. Methods: A scoping review was conducted using Joanna Briggs Institute guidelines and the PCC framework (Population: family members of ED patients; Concept: nursing care; Context: EDs). Literature published between 1980 and 2024 was systematically searched across the Japanese Medical Literature Database, PubMed, and CINAHL. Data extraction focused on intervention types, outcomes, and practices unique to Japan, with special attention to research gaps. Results: From the 811 studies screened (Japanese Medical Literature Database: 801, PubMed: 9, and CINAHL: 1), 48 were included in the analysis. Key findings highlighted psychological support, educational interventions, and information sharing as central themes. Family care is often viewed as an extension of patient-centered care, prioritizing holistic support. However, it sometimes fails to address the unique needs of families. Several significant gaps were identified, including the lack of culturally sensitive, standardized frameworks for family nursing, limited research on urban-rural disparities in practices and outcomes, insufficient studies on the long-term psychological and emotional impact of emergency department care on families, and inadequate attention to the distinct needs of families in family care integration. Conclusions and implications: Japanese family nursing is characterized by its integration into patient care and its emphasis on holistic support. However, this approach often fails to address the unique needs of families. There is a pressing need to develop a culturally sensitive and standardized framework that clearly defines family nursing. Alongside patient-centered care, greater emphasis should be placed on addressing the distinct needs of families.
Developing a Contemporary Definition of Family Nursing Using Scoping Review and Focus Group Methodologies: The Process
Sonja Meiers1, June Horowitz2, Lindsay Smith3, Cynthia Danford 4, Teresa Gutierrez Aleman5, Joana Campos6, Kirsten Dieckman7, Anne Ersig8, Junko Honda9, Norma Krumwiede10, Helene Moriarty11, Fernanda Machado Rodrigues12, Veronica Swallow13, Rie Wakimizu14, Makoto Tsukuda9
1University of Wisconsin, Eau Claire, WI, USA. 2University of Massachusetts Dartmouth, Dartmouth, MA, USA. 3Charles Sturt University, School of Nursing, Paramedicine, & Healthcare Sciences, Bathurst, New South Wales, Australia. 4Cleveland Clinic, Cleveland, Ohio, USA. 5University College Alberta Giménez-Comillas Pontifical University, Palma de Mallorca, Balearic Islands, Spain. 6Escola Superior de Enfermagem, Porto, Porto District, Spain. 7University of Wisconsin-Eau Claire, Eau Claire, WI, USA. 8University of Wisconsin-Madison, Madison, WI, USA. 9University of Hyogo, Akashi, Hyogo, Japan. 10Minnesota State University, Mankato, Mankato, MN, USA. 11Villanova University, M. Louise Fitzpatrick College of Nursing, Villanova, PA, USA. 12Universidade de São Paulo, São Paulo, São Paulo, Brazil. 13Sheffield Hallam University, Sheffield, England, United Kingdom. 14University of Tsukuba, Tsukuba-City, Ibaraki Prefecture, Japan
Abstract
Background and Purpose: Numerous scholars have contributed working definitions of family nursing to guide nursing care that strengthens families across time. The purpose of this study is to develop a contemporary definition of family nursing that can provide a unified direction for nursing science, practice, education, and policy. Methods: The scoping review will be conducted in accordance with JBI methodology for scoping reviews and the PRISMA-ScR guidelines will guide reporting. The Arksey and O’Malley framework will guide this study. Key information sources for the review will include relevant disciplinary databases and gray literature. Evidence will be sought from the beginning of professional nursing to 2025 to provide historic and contemporary context. Evidence from all languages within the databases will be included. The research team is comprised of persons from the United States, the United Kingdom, Japan, Australia, Portugal, Spain, and Brazil. Persons from within the professional network of research team members will be consulted to confirm content as expert panelists when non-English, non-Japanese, non-Spanish, or non-Portuguese language sources result. Additionally, focus group methodology will be used for the consultation component of the study. Consultation members will be sought from the International Family Nursing Association and invited to participate in focus groups to review the preliminary definition, propose revisions, and subsequently validate the final definition.
Results: Results of the literature review component of the scoping review will be displayed in table and diagram formats. Focus group findings will be depicted in figure and narrative format. A preliminary definition of family nursing based on the evidence review, data abstraction, thematic analysis, and consultation will result. Conclusions and Implications: The resulting contemporary definition of family nursing can be used to ground directions for nursing practice; set priorities for nursing research; guide prelicensure and graduate nursing education; and facilitate policy development.
The Family Experience of Being Informed of a Child’s Diagnosis of Down Syndrome: An Exploration of Change Over Time
Marcia Van Riper
University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
Abstract
Background and Purpose: Much has been written about how families of children with Down syndrome (DS) are informed of their child’s diagnosis. Guidelines have been developed for how to inform expectant and new parents of the diagnosis. In addition, families of children with DS throughout the world have devoted a great deal of time, effort, and money to increase awareness about life with DS. However, it remains unclear if these efforts have led to improvement over time in how families are informed of their child’s diagnosis of DS. Therefore, the purpose of this study was to examine DS diagnosis stories from the past four decades, with special emphasis given to the family-provider experience. Methods: In-depth interviews were conducted with 75 parents of children with DS from Ireland, Spain, United Kingdom, and the United States. Year of birth for the child with DS ranged from 1985 to 2019. Interviews were transcribed verbatim. Descriptive content analysis was used. Results: Most parents had some concerns about how they were informed of their child’s diagnosis of DS. Moreover, there was not a clear pattern of improvement over time; reports of parents receiving limited, often outdated information, about life with DS were common across all four decades. Reports of parents feeling pushed to make unwanted choices, such as terminating the pregnancy, were more likely to appear in diagnosis stories from the past decade. Conclusions and Implications: Efforts designed to improve how expectant and new parents are informed of their child’s diagnosis of DS need to be continued; parents need to receive accurate, updated information about life with DS. More research is needed concerning the relationship between advances in prenatal testing and societal attitudes towards expectant parents continuing a pregnancy following a prenatal diagnosis of DS. Funding Support: Fulbright Foundation, Dhillon's Gift
Tips and Strategies for How Family Nurses can Use Advances in Genomics to Promote Family Strengths
Marcia Van Riper
University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
Abstract
Background and Purpose: Family nurses are well-positioned to promote family strengths by using genomic information and related technologies to improve family well-being, resilience and health outcomes. However, despite ongoing international efforts to integrate genomic content into nursing curricula, the number of nurses actively integrating genomics into their research, teaching and practice is less than ideal. Results: This expert lecture provided practical tips and strategies for how family nurses can confidently use advances in genomics to promote family strengths by fostering a shared understanding about genetic conditions and genetic risk, empowering families to make well-informed decisions, enhancing family communication about decision-making regarding genetic testing and treatment options, and assessing the impact of being tested for and living with a genetic condition. Conclusions and Implications: Ten tips were shared: (1) Promote genomic literacy in your patients, their families and your colleagues, (2) Use family health history as a genomic tool, (3) Promote equity and access to genetic services, (4) Support open communication while respecting privacy, (5) Provide up-to-date information about new treatments and support options to families living with genetic conditions, (6) Help patients and families engage in preventive health measures based on known genetic risks, (7) Assist patients and families navigate complex ethical issues, (8) Acknowledge how beliefs and values influence genomic decision-making and views about treatment options, (9) Use genomic information to personalize health and wellness, and (10) Foster strengths and resilience through knowledge, support, and the sharing of individual and family stories. Examples of teaching strategies shared include family history activity, Gene Review activity, activity showing how ChatGPT can be used to individualize teaching about genetic conditions, family case studies focused on complex ethical dilemmas, pharmacogenomics activity, and a Genomics and the Family project. Many of these strategies have been used successfully for over twenty years in a required genomic course for undergrad nursing students.
Family Experiences Around Cardiac Surgery Across Childhood and Adolescence
Sarah Wawrzynski1, Erica Sood1,2, Kelsey Higgins1, Alejandra Perez Ramirez1, Nahyun Kang2, Melissa Alderfer1,2
1Nemours Childrens Health, Wilmington, Delaware, USA. 2Thomas Jefferson University, Philadelphia, Pennsylvania, USA
Abstract
Background and Purpose: Congenital Heart Disease (CHD) is the most common birth defect worldwide and hospitalization for cardiac surgery is unavoidable for many families. Research examining parents of newborns with CHD demonstrates that the time around surgery can be extraordinarily stressful and disruptive to families. However, little is known about the experiences and socioecological stressors of parents of older children with CHD undergoing surgery. Methods: We used a qualitative descriptive design and a socioecological framework to design this study. Using semi-structured interviews, we sought to understand family and community-level factors influencing preparedness and the experiences of families of children ages 3-17 who underwent cardiac surgery in the last two years. Parent participants were purposively sampled and represented diverse families. Qualitative content and thematic analysis were used. Results: A total of 28 parents participated (26 Mothers; 2 Fathers). We identified four main themes capturing aspects of the surgery experience: 1) Managing Emotions (both personal and family members); 2) Planning and Preparing (negotiating the logistics of work, home and caregiving); 3) Dealing with the Unexpected (complications, caregiving, and family challenges); and 4) Being Separated. Communication and support from the hospital staff influenced each of the main themes in both positive and negative ways. The context of the families’ lives (i.e., social resources, work, and the child’s developmental age) also played an important role in their experiences. Conclusions and Implications: Parents face challenges preparing their families and themselves for their child’s cardiac surgery. Healthcare staff interactions can support or make the experience more difficult. We highlight opportunities to provide better support to family members across developmental stages through targeted interventions. Screening families can identify those who may be at elevated risk for distress and can assist healthcare workers in meeting the needs of families during this difficult and vulnerable time.
Advancing Respite Research to Support Family Caregivers
Kim Whitmore
Marquette University, Milwaukee, Wisconsin, USA
Abstract
Background and Purpose: One of the most frequently expressed needs of family caregivers across the lifespan is respite – a temporary break from the responsibilities of caregiving. ARCH National Respite Network and Resource Center (ARCH) has advanced efforts to enhance the respite evidence base to assist with sustainability, promote continuous quality improvement, and help translate research into best practices. The Committee for Advancement of Respite Research (CARR) advises ARCH on the execution of its respite research initiative and is comprised of former members of the ARCH Expert Panel on Respite Research, research scholars and evaluators, and foundation representatives. The purpose of this session is to highlight the recent efforts of the CARR to address the following identified priority areas: 1) Define and measure the value (cost-effectiveness) of respite; 2) Recommend common data elements (CDE) for respite-related research; and 3) Expand culturally appropriate research with historically underrepresented populations. Methods: The CARR worked with national experts to conduct a comprehensive review of the literature, engage in online feedback sessions, and solicit feedback from key partners to inform work related to the priority areas. Results: The work on the CARR resulted in the following products: 1) Measuring the Value of Respite White Paper, which includes a proposed framework for research; 2) Recommended Common Data Elements (CDEs) for Respite-related Research; 3) Resources for Culturally and Linguistically Competent Respite Research; and 4) Ensuring Cultural and Linguistic Competence: A Guide for Respite Researchers. Conclusions and Implications: The products developed by the CARR are meant to serve as resources and guides for respite researchers. This work also aligns with the research recommendations in the 2022 National Strategy to Support Family Caregivers and will help advance national respite research efforts in the United States.
Survey of Family Dynamics and Care Challenges for Children with Medical Complexity in Japan
Miku Yamaguchi1, Hisashi Nakaguchi1, Maki Shirasaka2, Junko Honda3, Kiyomi Harada1
1Kyoto Prefectural University of Medicine, Kyoto, Kyoto, Japan. 2Shiga University of Medical Science, Otsu, Shiga, Japan. 3University of Hyogo, Akashi, Hyogo, Japan
Abstract
Background and Purpose: The number of children with medical complexity (CMC) is rapidly increasing, and these children are now able to live at home with their families. Home-based medical care often requires specialized medical devices, such as home mechanical ventilation, tracheostomy-related procedures, and tube feeding. Globally, these devices necessitate that informal familial caregivers use and manage them frequently at home. We conducted a fact-finding survey to better understand the living and care situations of families with CMC. Methods: In the prefectures of Kyoto and Shiga, there are 521 CMC living at home. We distributed the questionnaire to the primary informal caregivers of CMC through home-visit nurses. The data collected included caregiver and CMC characteristics such as family composition, employment status, availability for rest, hours of sleep and care, and use of public services. Results: In November 2024, the mid-term recovery rate was 15.9 %. A total of 77 datasets were analyzed. The mean age of caregivers was 41.0 years, with 89.6% being mothers. The mean age of CMC was 8.0 years. Families with one healthy child and one CMC were the most common, representing 46.8% of the sample. Of the primary caregivers, 49.4% were not employed, while 42.9% of families were dual earners. Additionally, 49.4% of primary caregivers reported having no time for rest, with an average of 15.2 hours per day devoted to care. The services utilized included home-visit medical care (61.0%) and home-visit nursing care (23.4%). The most common conditions among CMC were cerebral palsy (23.4%), chromosomal abnormalities (10.4%), and epilepsy (6.5%). Conclusions and Implications: To sustain family functioning and enhance the quality of life for CMCs, comprehensive family support in collaboration with the community is essential, tailored to the family’s living situation and diverse needs.
Perceptions of Parents or Families and Public Health Nurses Regarding Child Rearing Support Dialogue: Similarities and Differences
Mami Yamamoto1, Akiko Kadoma2, Midori Asano3
1Hamamatsu University School of Medicine, Hamamatsu, Shizuoka, Japan. 2Nagoya City University, Nagoya, Aichi, Japan. 3Shubun University, Ichinomiya, Aichi, Japan
Abstract
Background and Purpose: In continuous child-rearing support, it is important to maintain two-way dialogue between parents/families and experts. We previously determined the perceptions of parents/families and PHNs on the dialogue in child-rearing support. The purposes of the present study were to integrate the two perceptions of the dialogue and clarify the commonalities and differences in perceptions between parents/families and PHNs. Methods: In our previous studies, we clarified the perceptions of parents/families and PHNs regarding the dialogue by categorizing data collected through semi-structured interviews. In the present study, the identified perception categories of parents/families and PHNs were analyzed. Categories with similar meanings were classified as common perceptions on dialogue, and those with different meanings were classified as different perceptions. Results: Common perceptions on dialogue shared by PHNs and parents/families included “having a dialogue as ‘I’ and ‘you’ rather than based on positions”, “continuing the dialogue together”, “discovering new methods and ways of thinking about child-rearing”, and “difficulty finding topics that utilize expertise”. In terms of different perceptions between parents/families and PHNs, parents/families’ perceptions included “being able to talk about things that are difficult to talk about with family and friends”, “calming emotions”, and “changing family relationships”. Thoughts on dialogue by PHNs included “ensuring the free choice of diverse ways of thinking”, “leaving a conclusion for the future”, and “determining one's resolve to continue the dialogue”. Conclusions and Implications: Common perceptions of the dialogue by PHNs and parents/families were that they would continue to have the dialogue together as "you and I." Public health nurses’ attitudes enabled families to continue to dialogue. Continuation of the dialogue was underpinned by both common and different perceptions.
