Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families

Abstract

The purpose of this study was to better understand the burden(s) associated with type 1 diabetes mellitus (T1DM) on school-aged youth and families and subsequently identify strategies school nurses can adopt to reduce the impact of this disease. Family interviews (n = 5 families, comprised of 15 individual participants) were conducted using a semi-structured interview guide to further explore family members’ experiences with T1DM. Directed content analysis was employed for theme identification. Themes reflect individual and family struggles, the importance of teamwork within families, navigating barriers, and facing uncertainty. Select themes provided the impetus for the development of a school-based program directed toward youth and families with T1DM. Plans include developing educational content plus therapeutic conversations with a focus on communication, care coordination, cognition, problem-solving, and strength-building. An emphasis will be placed on participant-directed program content with peer support for youth with T1DM and family members.

Keywords

pediatric diabetes family interview school nurse type 1 diabetes mellitus chronic illness school-aged child school-based clinic diabetes education

Introduction

Type 1 Diabetes Mellitus (T1DM) currently affects 0.30% of children under age 20 in the United States (US), an estimated 244,000 children and adolescents (Centers for Disease Control and Prevention [CDC], 2022). This represents an increase from 187,000 in 2020 (CDC, 2020) or 0.04% in just two years. In addition to a rise in prevalence, the incidence of T1DM is increasing, in part due to the SARS-CoV-2 infection (Gottesman et al., 2022). Gottesman et al. (2022) found the COVID-19 pandemic not only increased the risk for new onset T1DM in youth but also increased the risk for diabetic ketoacidosis (DKA) and severe DKA in youth. Kendall et al. (2022) found new onset of T1DM in children was associated with COVID-19 infection. These trends may have a significant impact on the critical roles and responsibilities of school nurses involved in caring for youth and families with T1DM who are currently reporting numerous barriers in diabetes care (An et al., 2022). Wilt (2022) discusses the role of school nurse presence in providing safe diabetes care to youth. Diabetes safety correlated with higher levels of parent satisfaction. The ratio of school nurse to student (Wilt, 2022) and school nurse attitudes and understanding of T1DM were found to be important predictors of successful management of T1DM in schools (Lee et al., 2021).

The National Association of School Nurses (NASN) statement (2016) indicates diabetes care is a critical function of school nurses, and the NASN has developed an evidence-based practice guideline and toolkit (Olson, 2022), yet recent evidence suggests that adequate staffing of school nurses is important for students to have best school performance in the presence of chronic illness such as T1DM (Daughtry & Engelke, 2018). Fluctuations in blood glucose affect both children's school performance and family life (Cooper et al., 2016; see also Persson et al., 2019; Van Gampelaere et al., 2020). Nurses are key to implementing interventions that can help children increase their adherence to glucose monitoring (Messer et al., 2022). Families of children with T1DM also experience multiple demands with stress and uncertainty emerging as key concerns for health of the child and family (Dougherty, 2015; see also Haegele et al., 2022; Rechenberg et al., 2017; Van Gampelaere et al., 2020). An integrative review by Rechenberg et al. (2017) highlights the stress experienced by mothers of children with diabetes and calls for interventions that improve coping skills and provide a social support network to sustain caregivers and families living with T1DM.

Background

Researchers describe numerous factors impacting families of children with diabetes, such as the family experience with diabetes, self-management skills of the family, and the relationship with school nurses (Cooper et al., 2016; see also Felix et al., 2020; Foley et al., 2014; Van Gampelaere et al., 2020). Aspects of family life including parenting interventions, family composition, and income (Lohan et al., 2015; Rechenberg et al., 2016) have also been identified as influencing the health of families living with diabetes. For example, families with low- or moderate-income levels showed worse glycemic control (as measured by hemoglobin A1c (HbA1c) than families with higher incomes (Rechenberg et al., 2016). Having insurance coverage, and whether it was public or private, also was a factor, with private insurance correlating to improved glycemic control (Watson et al., 2017).

A family experience with diabetes has several perspectives, including mothers who are often an expert on their child's diabetes care, the viewpoint of siblings, and stress on the family (Lohan et al., 2015; see also Cooper et al., 2016; Rechenberg et al., 2016). Mothers of children with T1DM report elevated levels of stress and posttraumatic stress (Rechenberg et al., 2017). Parents who shared responsibility with each other for their child's diabetes management have less distress related to their child's care (Lohan et al., 2015), while single parent families struggle more with managing the care of a child with diabetes, evidenced by reduced glycemic control (Watson et al., 2017). Researchers highlight the increased stress in all members of the family, including siblings, who express increased worries, increased behavioral issues, and loss of parental attention (Dougherty, 2015).

A significant factor that increases stress on families is difficulty entrusting others with the care of their child with T1DM (Haegele et al., 2022). Therefore, the school becomes a key social system affecting health of child and family living with diabetes. However, school nurses report numerous individual, school, and community barriers that lead to diabetes care implementation gaps and call for change in implementation strategies (An et al., 2022). School-based diabetes care has been shown to be most effective when there is collaboration between providers, parents, and school nurses (Smith et al., 2019; Tonyushkina et al., 2021).

Developing increased self-management through coping skills training, improving adherence to the treatment plan at school, and implementing psychosocial interventions can reduce stress on children with T1DM and their families (Aljawarneh et al., 2020; Felix et al., 2020; Ng et al., 2022). Children/teens need assistance and support in developing healthy coping strategies for T1DM and can benefit from the opportunity to ask questions and build on existing knowledge (Aljawarneh et al., 2020). Connections with peers who have T1DM or peers who do not have T1DM, but who express understanding can also improve coping (Marshall et al., 2018). Psychological interventions with children and teens show promise for improving glycemic control (Aljawarneh et al., 2020).

Nurse-led interventions with children and adolescents have been shown to help youth increase their self-management of T1DM (Messer et al., 2022), with school nurses having opportunities to address challenges and provide support to children and families (Freeborn et al., 2013; Smith et al., 2019). In addition, increased collaboration between providers and school nurses improved self-management and learning experiences for the child with T1DM (Foley et al., 2014; Smith et al., 2019). In summary, a positive working relationship between families of children with T1DM, school nurses, and providers reduces tensions and provides the best learning situation for children to practice optimal diabetes self-management (Foley et al., 2014; Smith et al., 2019).

Theoretical Framework

The self and family management framework (SFMF) (Grey et al., 2015; Schulman-Green et al., 2021) guided this study. This framework proposes that understanding the unique child/teen and family facilitators and barriers, as well as processes, is essential for influencing health outcomes. Processes encompass activities directed towards activating various resources that address specific illness needs. Illness needs include various tasks and skills required to physically manage and live with a chronic illness (Meiers et al., 2020). Examples include gaining knowledge about how to manage the condition, assuming ownership for various illness and health related needs, and performing health promoting activities. Families living with T1DM need to be able to activate key resources to further their ability to manage T1DM. Tasks and skills include communicating with providers, coordinating services, managing social support, identifying mental health needs and resources, and addressing the many social and environmental challenges that living with a chronic illness brings. Children with T1DM and their family need to learn to live with T1DM. Tasks and skills associated with successfully living with a chronic disease include learning how to integrate T1DM into everyday life and cope with the chronicity of this illness.

The shared nature of individual and family health experiences in a chronic illness suggests that communication and connection processes influence the health of a child and family (Denham, 2003; Meiers et al., 2020). Outcome measures in the SFMF are categorized as either proximal or distal (Grey et al., 2015). Proximal outcomes include categories such as behaviors, cognitions, and biomarkers like stress and symptom management, while distal outcomes include health status, individual outcomes such as quality of life, family outcomes, and various factors associated with health care (Grey et al., 2015).

Purpose

The purpose of this research study was to gather data to better understand the needs and experiences of families of children with T1DM in order to identify strategies that reduce the adverse impact of T1DM on these families. The study aim was to use findings gleaned from families with T1DM to inform school-based diabetes programming. Providing support to families and children with T1DM has the potential to improve metabolic control, enhance school attendance/performance, and improve quality of life for children and adolescents as well as families, including siblings of children with T1DM (Freeborn et al., 2013; see also Dougherty, 2015; Jönsson et al., 2016).

Design

Setting

The study setting was a midwestern state (Minnesota). Both rural and suburban families were included. The setting where the diabetes programming will occur is a suburban school with the program implemented in a nurse-managed school health center.

Interprofessional Team

An interprofessional team of family social scientists, family researchers, family and pediatric nurse practitioners, and doctoral students was formed to provide knowledge in family health, diabetes management, and practice interventions. A team with expertise in family research and family practice was needed to plan and implement the study design. One member of the team had experience working as a licensed school nurse before becoming a nurse practitioner.

This study included a qualitative design with family interviews conducted to learn more about the needs of families with children who have T1DM. Interviewing family members together has been described as an effective tool for gaining a full understanding of the impact of an illness experience and identifying directions to support family health (Eggenberger & Nelms, 2007). A family unit interview can also have a “therapeutic effect” (p. 282) that can help the family cope with the illness experience. The goal of the family interviews was to deepen the understanding of the illness experience in this setting and guide school programming initiatives to support families of children with T1DM. The demands of a global pandemic on families and barriers such as distance for travel and scheduling conflicts of family members required researchers to plan for interviews using Zoom software.

Methods

Human Subject

Approval was obtained from Minnesota State University – Mankato's Human Subjects Institutional Review Board (IRB number 1571391) and the Bloomington Public Schools Department of Research, Evaluation, and Assessment.

Recruitment

Initially, this study was aimed at interviewing parents in one school district. However, recruiting for this study coincided with the beginning of the COVID-19 pandemic. After the onset of the pandemic, it became much more difficult to recruit families. As a result, recruitment was expanded to include families from Minnesota who had a school-aged child with T1DM. This had the added benefit of allowing us to interview families who lived in both rural and urban settings. We recruited families from the Minneapolis/St Paul area and from Southern Minnesota.

To recruit families for the study, fliers were distributed through community organizations which included the school nurses from a suburban school district (Bloomington Public Schools), a school-based health clinic, a camp for children with T1DM, a diabetes center in a small town, and a program that offers babysitting for families of children with T1DM. Families who responded to the presentation or flier were invited to participate via email or phone call. Inclusion criteria included a school-aged child from kindergarten through high school diagnosed with T1DM who was willing to participate, and a family member willing to participate in a family interview. Family units who did not have any family members willing to engage in an interview or unable to meet via Zoom software were excluded. Families participating in the family interview were given $25 gift card to Target, as well as age-appropriate children's or teen books about diabetes. Many families were interested in the study, but often failed to commit to participation.

Data Collection

Data was collected during the 2019–2020 school year. Family interviews (n = 5 families, consisting of 15 individual participants) consisted of an interview over Zoom software. Interviews lasted 45–60 min and included multiple family members. A minimum of two researchers with varied expertise participated in the interviews, which enabled the team to handle the technology with careful listening and interviewing techniques. Researchers who participated in each interview had experience in conducting family interviews and expertise in working with families coping with a chronic illness. A semi-structured interview guide was developed by nurse researchers using expertise in research, theory, and practice (see Supplemental Table 1). The interview was scheduled at a time that was convenient for the family. The family was self-defined, with all members encouraged to participate, but not required. In order to follow family interview design, at least one parent or guardian had to participate with the child who has T1DM. Details of the interview and the study were discussed with each participant before the interview. All adults gave consent for their own participation, a parent gave consent for each child participating, and each child gave assent for their own participation in the study before the interview was conducted. Each interview was recorded and transcribed for analysis. The interviewer created a genogram and an ecomap for each participating family (Meiers, 2016; Shajani & Snell, 2019).

Each of the families (n = 5) interviewed had different family structures and more than one family member participating (see Table 1: Family Composition and Demographics, below). Participants included families from suburban and rural areas. Families had different numbers of family members participating, with interviews including 2 to 4 family members. The interviews included children of a variety of ages, and some had special needs in addition to T1DM. Constructing a genogram and an ecomap for each family helped us to better understand each family's sources of support and connections within their community, as well as relationships with the school and health care resources.

Table 1.

Family Composition and Demographics.

	Composition	Location	Participation	Age of Child with T1DM	Notes
Family 1	2 parents, 2 children	suburban	all	15	Overall healthy with resources
Family 2	2 parents, 3 children, grandma	suburban	2 parents, 1 child, grandma	6	Expecting new baby
Family 3	2 parents, 4 children	suburban	2 parents, 1 child	16	3 children with T1DM
Family 4	1 parent, 1 child, grandpa	rural	1 parent, 1 child	10	Single mom, child has special needs
Family 5	1 foster mother, 1 child	rural	1 foster mother, 1 child	8	Child has developmental delays; foster mom is grandma

Data Sources

Interview data included a transcribed interview (n = 5) and drawing(s) (n = 3) created by the child with diabetes or their sibling. Each consenting family participated in the interview and the children from the family were also given the option to draw a picture representing diabetes. Researchers were careful to avoid placing any undue pressure on a child to share a drawing. Each child was given the following instructions: “If you want, draw a picture that shows diabetes.” Two children chose to share their drawing with the family and the researcher. As recommended by Webber (2020), all children were given the opportunity to interpret and discuss their drawings with the researchers and family members.

Data Analysis

Interview data was analyzed using a directed content analysis method (Hsieh & Shannon, 2005). All members of the research team participated in data analysis processes. The team was deliberate in ensuring researchers with expertise in clinical management of T1DM, family nursing illness experiences, family management theory, and family health and nursing practice collaborated in the analysis process.

Several steps of analysis were implemented to ensure rigor of findings. First, each researcher independently reviewed transcribed interviews using a line-by-line analysis to identify key concepts focused on family nursing science and family management in the data. Each researcher identified specific exemplary quotes in their interviews. Second, after each researcher analyzed two family interviews, researchers from the team met in pairs to share and discuss their findings. After gaining an understanding of the other researchers’ analysis and findings, they proceeded to the remaining family interviews. Steps of analysis are depicted in Figure 1 below.

Figure 1.

Steps for analysis.

Next, the entire team of researchers met to discuss the key concepts evident in each interview. Discussion continued until the team reached consensus on the presence of the concept and then proceeded to naming of the concepts. Several team meetings were held to explore the findings and group the data in thematic statements focused on family illness experience and family management. Recurrent themes were identified in multiple interviews. An iterative process continued until consensus was reached on themes extracted from the interviews. Recurring themes from multiple interviews were recognized indicating that data saturation was reached (Kerr et al., 2010; Morse, 2015).

Following completion of the interview data analysis process, the team individually examined all drawings completed by the children. Guided by the work of Mouratidi et al. (2016), the team then met to discuss the drawings and gain understandings of the child's subjective perceptions of illness. The researchers who participated in the family interview offered their reflection on the child's statements about the drawing and their interpretation. If there was a drawing available from the child, the team then explored how the drawing aligned with the themes identified in the interview. Overall, the drawings supported thematic findings. See Supplemental Figures 2 to 4.

Lastly, the team of researchers met to review the thematic findings and use the identified concepts and themes to propose program directions. Researchers also used empirical evidence to inform their plan for diabetes programming. Plans were developed to address specific content regarding various processes in order to impact select health outcomes outlined in the model (Grey et al., 2015). Strategies focused on enhancing individual and family health and diabetes management were outlined for each content area. Strategies were based on Family Models (Meiers et al., 2016) and the SFMF (Grey et al., 2015; Schulman-Green et al., 2021). For example, strategies that address improving family communication within the family unit and with providers and managing social support through the facilitation of enhancing coping skills were embedded within program plans. Communication with family members and the child with T1DM to identify illness needs and concerns were planned for each program session (Shajani & Snell, 2019). Each program session was designed to address various tasks and skills associated with successfully living with T1DM and how to integrate aspects of the disease into everyday school and home life. Strategies were designed to directly impact proximal outcomes which ultimately enhance distal outcomes (including quality of family life and family outcomes).

Results

Analysis of interview data including a child with diabetes and family member(s) identified five major themes:

Burden of care: Living with diabetes

Vigilance of family

Challenges in health care

Interacting with health care providers

Navigating diabetes in the school community

Themes

Burden of Care: Living with Diabetes

All participating families had members who described the burdens of caring for a child family member living with T1DM. As noted by one family member, the emotional and physical demands began with a diabetes diagnosis: “It was very bad when I first heard about it, but I got through it.” One parent described the load of diabetes: “It's a lot of heavy sometimes.” Another parent portrayed the struggle of facing the demands: “It feels like an insurmountable wall sometimes.” The ongoing nature of living with diabetes that was often exacerbated by developmental changes was evident: “You can fight the numbers but there's no end, but you can’t [stop]….” Father and mother participants reported the unrelenting and/or chronic characteristics of diabetes, “There is no break”, while also recognizing the constancy for the child with diabetes: “You know, I think it's the no break, and the no break for him [child with diabetes] too”. How T1DM impacts a family was noted throughout the interviews, as participants shared that all their family members were affected by the diagnosis.

Not feeling heard and feeling blamed was echoed by several family members experiencing diabetes within their family. One mother shared the unsettling experience of having Child Protective Services (CPS) called by an anonymous neighbor who said she was giving her child “too much sugar” in his diet. She said, “We keep track of his numbers and I showed the CPS guy everything, and he's [CPS] like ‘Oh yes this is crazy, this isn’t even a thing. You’re fine. You’re fine.”

In family member's accounts of living with T1DM, all children discussed the negative feelings that the diagnosis and unfolding experiences produced. For example, a child with T1DM shared their thoughts about having diabetes, “It's in your face—this is real.” Furthermore, pictures created by the child with diabetes or a sibling who chose to participate clearly depicted the enormous presence diabetes plays in daily life. See Supplemental Figures 2 to 4. For example, in Supplemental Figure 2, a sibling drew a picture of a bear to represent diabetes, making the bear much bigger than her sister and saying, “Diabetes is a big thing for my sister to deal with.” In Supplemental Figure 4, a child with diabetes drew a picture to represent the feeling of freedom she felt “swimming with my Omnipod.” She described that when she got her Omnipod, a continuous glucose monitor, she no longer had to stay right by a parent in the water while swimming. Otherwise, swimming can be a dangerous activity for a small child with diabetes since vigorous activity can trigger low blood sugar.

The COVID-19 pandemic brought additional concerns. Parents report the additional burden of not knowing how their child with diabetes would be affected if they contracted COVID-19. One family reported watching the data on how people with diabetes were affected by COVID and saw that it kept changing. In addition to following the research, they were concerned about “how can you help your kid emotionally and educationally during this time. It was a lot.”

Vigilance of Family

A second theme related to the vigilance that families adopted in living with diabetes and how diabetes impacts the family unit and members. “We constantly have to think of it. It's like brushing your teeth or showering on a daily basis. It's always on the mind of the parent.”

As they worked to protect their child with T1DM, families described the emotional impact, “I get really paranoid about going to bed” [after having to give glucagon at night] and the family member added, “So, as soon as bedtime hits, you skyrocket.” One mother reported having to at times step back from “being right there on top of things as everybody else feels the pressure and wants me to step back.” She described the challenges of being attentive yet having to let their child manage the highs and lows. She added “there were always things to worry about.”

Challenges in Health Care

All participants reported a variety of challenges in health care systems and delivery as they cared for a child living with diabetes. Three principal areas in health care that families reported presenting challenges: health care insurance, interacting with health care providers, and navigating diabetes in the school community. Dealing with insurance presented an ongoing challenge. Families, even those with “good insurance” felt like they were faced ongoing challenges when contacting insurance representatives regarding coverage [e.g., insulin, insulin pumps/injection devices and related supplies for monitoring diabetes control]. These battles recurred annually in some cases, or even as often as every 3–6 months.

Interacting with Health Care Providers

Seeking supportive and quality guidance and care from care providers was a challenge repeatedly noted by family members. For example, a parent stated, “Providers assume high HgA1C is due to poor self-management practices and refer for re-education (whether needed or not)”, when high HgA1C may be due to hormonal or other changes associated with adolescence. Families look for providers that understand T1DM. One family said “it helps when you have somebody that's confident.” Several families reported that even making a connection with a health care provider was a challenge during the COVID-19 pandemic. As one family commented “Instead of going up there for an appointment, I had to play phone tag with the nurses and the doctors and things like that.”

A family member described an Emergency Department (ED) encounter that created stress for the family with compounding health concerns. “The child with T1DM had depressive symptoms and the ED took away her insulin pump and tubing for 6 h during a psychiatric workup for depression” [increasing the risk for diabetes ketoacidosis (DKA).] A child participant described an encounter that created a threatening environment that was not perceived as supportive, where a provider said, “You’re gonna lose your eyesight.” The limited positive educational supports available to families was highlighted in the following statement about being repeatedly referred to see the nurse educator: “I don’t even want to count how many times I’ve seen the piece of plastic mashed potato… and a little plastic cup of milk, yeah,” [referring to plastic food models used in educating families about food choices] “because the doctors don’t know what else to do.”

Navigating Diabetes in the School Community

The school community is a key social system to a family with school-aged children, that can become even more critical to a family living with chronic illness of diabetes. Peers, teachers, and school nurses were central figures in the lives of children and families working to navigate diabetes in their communities. Each family described examples of school experiences that positively impacted family support. For example, one family reported how the parent and child worked with the school system to create a positive force: “The teacher and principal let me go to his classes… to talk to them about it and what it's like, and we’ve read books about it to his friends, so he has educated them pretty well about what diabetes is.”

Conversely, parents also identified experiences that created the opposite of a supportive environment. One mother explained, referring to school environment, school nursing, and lack of support for her child in a community where they moved from, “The school isn't very good with cares…. they kind of push people to the point where they just leave the community” [referring to families of diabetic children]. “We hear that another family with two diabetic girls has left too.”

The importance of the role of school nurses in caring for the child and family with diabetes was a clear finding in the interviews. For example, one mother described her fears of leaving one school nurse after developing a supportive bond, “So he's got a really great nurse at school… she was with us from the beginning… He's going to middle school this next year and I’ll be really sad for him to leave his nurse because that's been a very important relationship.” This issue of added stress when transitioning to middle school or high school came up in multiple interviews, due to impending changes in school nursing support. Often, more is expected in terms of self-care at these transition points to middle school and high school. One mom of a teenage girl explained, “I have made friends with all the nurses…. They’ve got her back [referring to teenage daughter with diabetes] when she comes walking in, they’re gonna pay attention to what she has to say.”

Discussion

A central question prompting this work was: How can health professionals lighten the burden for children with T1DM and their families through school-based programs? Our findings provided a way forward, and gave directions for our team and schools. First, similar to the work of March et al. (2020), our findings suggest school nurses are important to health outcomes since the family relationship with school nurses is one that brings security to these families as they entrust their child's care to someone else during the school day. The child and family participants were often seeking connections and resources to address the many challenges of diabetes. The school nurse could be a leader in arranging school-based programs that meet the needs of the child and families who share in this experience of diabetes. To do this, the school nurse may benefit from additional training in diabetes care and understanding of the needs of families of children with T1DM.

Second, family interviews were central to this study's data collection and findings show that dialogue with family members provides valuable insights into the individual and family experience of living with T1DM. Findings indicate diabetes programs can be enhanced when including a child and family focus. Like the work of Årestedt et al. (2015), family interviews can uncover the struggles of a family living with chronic illness and provide directions on interventions for family health. Our findings suggest that even though individuals may experience the challenges of diabetes as a family, not all families work as a family unit and team. Findings from this study showed how many members of these families feel isolated and would appreciate an opportunity to connect with other families of children dealing with the T1DM. These children and families might respond to peer mentoring and diabetes education that involves decision-making and problem solving and assistance with adopting best diabetes management practices daily. Furthermore, these results suggest further exploration of including childhood drawings as part of family interviews, in addition to interview questions to prompt further exploration of meanings of chronic illness to children and families (Webber, 2020). As noted by Blaisdell et al. (2019), providing children with the opportunity to speak through their drawings and art offers promise in gaining new understandings.

Using findings from the current study moves beyond individual and symptom-related interventions to proposing directions for diabetes programs based on youth and family T1DM related experiences. Program development strategies were informed by Feldman et al. (2018) and Hilliard et al. (2016). Interviews with multiple family members encourage understanding of family health as a whole and encourage dialogue among family members to help gain insights into family health and T1DM. Study findings align with the work of Felix et al. (2020) who call for developing family models in diabetes self-management programs. Furthermore, the data found from this study indicated that there may be increased stress during the transition from elementary to middle school and from middle school to high school for both youth with T1DM and families. Quite possibly, families could benefit by connecting with other families with a child with T1DM who have already successfully completed these transitions to learn strategies for successful transition and to feel reassured when enrolling in a new school environment.

It is important to understand the stress that all members of families of school-aged children with T1DM face. These stressors appear to be magnified at transition points, such as when transitioning to a middle school or high school. There is a dearth of research addressing how to assist youth with T1DM and families cope within these transitional stages. There are also changes in glycemic control that occur during adolescence related to puberty, hormonal imbalances and increasing insulin resistance; it is important to recognized that fluctuations in blood glucose and metabolic control are often not the fault of the youth with T1DM or family but can be attributed to the biochemical and psychosocial challenges that adolescents face. Thus, children and families need particular attention from health care professionals during transitions.

Implications for Practice

Managing the complexities of T1DM self-management is a formidable challenge for youth with T1DM and their families (Felix et al., 2020). The Self and Family Management Framework (SFMF) can serve as an effective model to further elucidate the processes of self-management and factors impacting self-management for youth and families dealing with T1DM (Grey et al., 2015). The SFMF can enhance school nurses understanding of how facilitators and barriers impact abilities and outcomes of individuals and families dealing with a chronic disease like T1DM. The SFMF can also guide study design and inform interview questions. As demonstrated in this study, the model can also be used to assist researchers in the analysis and interpretation of study findings and facilitate the development of interventions related to T1DM disease management practices.

The presence of school nurses has been identified as a significant factor for families and their child's perceptions of safety, helpfulness and satisfaction in school care with diabetes (Wilt, 2022). Collaboration between school and family is needed to accomplish goals of health for youth and family (An et al., 2021; Lawrence et al., 2022). In the work of An et al. (2021), school nurses describe family knowledge and needs as a significant barrier to school-based diabetes care. The school nurses’ understanding of diabetes and use of the NASN resources (Olson, 2022) have not been established. The literature and this study suggest a partnership with school nurse presence is critical to safe outcomes. In this study, all of the families interviewed reported having interaction with a school nurse, and having school nurses present during the school day at the schools their children attended. In every case, this relationship was considered important to the family.

Our findings suggest school-based support programs should include the following elements provided by a knowledgeable cross-disciplinary team: multiple sessions with groups of school-aged children, siblings, family, and combined. Sessions can provide a foundation for a school nurse-child-family partnership that will help the school nurse and family develop action plans that support the need to be vigilant about the child with diabetes and support the family in navigating diabetes within school systems. There are tools available from the NASN such as a practice guideline and toolkit (Olson, 2022).

Furthermore, sessions could be tailored to the needs of participants since some of their challenges may be unique and yet have commonalities that can be addressed for all. Programs should provide structure with focus yet allow for the sessions to be participant-guided. Addressing communication, care coordination, cognition, problem-solving, and strength-building are all strategies that hold promise to mitigate some of the burdens and challenges of diabetes while guiding families in navigating diabetes in the school system (An et al., 2021; see also Denham, 2003; Meiers, 2016; Shajani & Snell, 2019). It may also be beneficial for members of these families to share their own novel strategies, stories, and experiences of living with T1DM that could ultimately help other families address the burdens and challenges associated with T1DM. Findings from this study also suggest adding a visual art component, such as participants’ drawings, to sessions in a school-based diabetes care program. Childhood drawings can provide interpretations of life with diabetes that may deepen understandings and provide guidance for a school nurse leading implementation of diabetes care in schools (Kane & Fearon, 2018).

For such a program to succeed, it is important to enlist high-functioning parents to mentor other parents and get other members of the diabetes team from the community such as providers, Certified Diabetes Educators, school counselors, and others to support school nurses. This program would start small with anticipated growth opportunities within a given school community. Many families expressed enthusiasm to participate, either as mentors or learners, when presented with this idea. They seemed eager to form connections with each other within their local school community.

The COVID-19 Pandemic has increased the stress on families of children with T1DM; they often did not have options for childcare during the Pandemic, and their children with T1DM faced more risks from the disease. This was evident in this study. The COVID-19 Pandemic has also seen an increase of new diagnoses of T1DM in children (Gottesman et al., 2022; Kendall et al., 2022). It is important to support families of children with both existing T1DM and new-onset T1DM, and seek to understand how diabetes is impacting their lives as they navigate uncertainty and change.

Recommendations for Future Research

Research is needed to explore the impact of a school-based diabetes programming on children and family diabetes management. Testing various school programming content and methods is needed to identify those interventions that result in positive family health outcomes. Additional research is needed to identify effective techniques to engage families in diabetes care and positively influence diabetes self-management outcomes for school age-children, and also address the needs of siblings of children with T1DM. Longitudinal research studies are needed to further explore maintaining the continuity of care for school-aged children during transitions between schools. Further research is also needed to identify the most effective ways to ease the load of school nurses in partnering with children and families coping with diabetes.

Limitations

The COVID-19 Pandemic presented challenges for this study. The data was collected during the 2019–2020 school year, when the pandemic was highly disruptive, and schools went to online delivery. The small number of participants and number of families who included all members of a family was a limitation. However, the data collected was rich and themes were discovered that were consistent across interviews. We were able to glean valuable information about the impact of the pandemic on families of children with T1DM. A strength was that our sample did include families that had two parents, as well as single parent families. Another strength was that we had participation from both rural and suburban families. A limitation was that we did not have any urban families, or students without school nurses.

Conclusions

Families of children with T1DM need increased support. Collaboration between school and family is essential to positively impact the health of the child and family. In the interviews for this study, the school nurse relationship was very important to the families of children with T1DM. The interviews showed that there is increased stress at times of transition, such as when a child with T1DM goes to middle school or high school. School nurses have an opportunity to help children and parents navigate such transitions successfully by helping with transition planning.

School nurses may also want to be aware of the stress that all members of families of children with T1DM experience, including siblings (Dougherty, 2015). The families that were interviewed had many challenges navigating the health care system and obtaining needed resources for diabetes care. The families interviewed also had a feeling of getting no break, due to the constant nature of the disease. Understanding the stresses and strains on these families can help the school nurse to offer meaningful help and support to all members of the families of children with T1DM.

School nurses should be active coaches helping children with T1DM learn to troubleshoot situations and develop decision-making skills about daily disease self-management, so that as they grow older, they can develop more independence in their ability to manage this complex disease. School nursing staffing must be conducive to meeting the standards of care. School nurses need support from a cross-disciplinary team of providers, Certified Diabetes Educators, and school counselors to work with families of children with T1DM.

Supplemental Material

sj-pdf-1-jsn-10.1177_10598405231170686 - Supplemental material for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families

Supplemental material, sj-pdf-1-jsn-10.1177_10598405231170686 for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families by Sarah J. Ogilvie, Patricia Beierwaltes, Gwen Verchota, Seonhwa Lee, and Sandra Eggenberger in The Journal of School Nursing

Supplemental Material

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Supplemental material, sj-pdf-2-jsn-10.1177_10598405231170686 for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families by Sarah J. Ogilvie, Patricia Beierwaltes, Gwen Verchota, Seonhwa Lee, and Sandra Eggenberger in The Journal of School Nursing

Supplemental Material

sj-pdf-3-jsn-10.1177_10598405231170686 - Supplemental material for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families

Supplemental material, sj-pdf-3-jsn-10.1177_10598405231170686 for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families by Sarah J. Ogilvie, Patricia Beierwaltes, Gwen Verchota, Seonhwa Lee, and Sandra Eggenberger in The Journal of School Nursing

Supplemental Material

sj-pdf-4-jsn-10.1177_10598405231170686 - Supplemental material for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families

Supplemental material, sj-pdf-4-jsn-10.1177_10598405231170686 for Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families by Sarah J. Ogilvie, Patricia Beierwaltes, Gwen Verchota, Seonhwa Lee, and Sandra Eggenberger in The Journal of School Nursing

Footnotes

Acknowledgements

The authors would like to acknowledge the contributions of Chelsi Esqueda DNP RN, and Rebecca Houston MA, who contributed to the data gathering and data analysis phases of the study. We also appreciate the support we received from Bloomington Public Schools and Health Commons at Pond, a school-based health clinic.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Sarah J. Ogilvie

Patricia Beierwaltes

Sandra Eggenberger

Supplemental Material

Supplemental material for this article is available online.

Author Biographies

Sarah J. Ogilvie, DNP, FNP-C, is a assistant professor at Minnesota State University – Mankato, Mankato, MN, USA.

Patricia Beierwaltes, DNP, C-PNP, is a associate professor at Minnesota State University – Mankato; Clinical Coordinator at Health Commons at Pond, Bloomington, Mankato, MN, USA.

Gwen Verchota, PhD, APRN-BC, is a emerita faculty at Minnesota State University – Mankato, Mankato, MN, USA.

Seonhwa Lee, PhD, LAMFT, is a postdoctoral fellow at the Department of Human Development and Family Science, Syracuse University, New York, NY, USA.

Sandra Eggenberger, PhD, RN, is a distinguished professor emeritus and founding director Glen Taylor nursing institute for family and society at Minnesota State University – Mankato, MSU Graduate and Professional Education Center, Mankato, MN, USA.

References

Aljawarneh

Y. M.

Al-Qaissi

N. M.

Ghunaim

H. Y.

(2020). Psychological interventions for adherence, metabolic control, and coping with stress in adolescents with type 1 diabetes: A systematic review. World Journal of Pediatrics, 16(5), 456–470. https://doi.org/10.1007/s12519-020-00352-6

Cole

Park

Lyon

A. R.

White

N. H.

(2021). Barriers and diabetes care quality in public schools in the United States. Health Behavior and Policy Review, 8(6), 514–533. https://doi.org/10.l4485/HBPR.8.6.3

Cole

Park

Lyon

A. R.

White

(2022). Determinants of school diabetes care services and quality through the lens of the school nurse: A qualitative analysis. Advances in Nursing Science, 45(4), 351–370. https://doi.org/10.1097/ANS.0000000000000425

Årestedt

Benzein

Persson

(2015). Families living with chronic illness: Beliefs about illness, family, and health care. Journal of Family Nursing, 21(2), 206–231. https://doi.org/10.1177/1074840715576794

Blaisdell

Arnott

Wall

Robinson

(2019). Look Who’s Talking: Using creative, playful arts-based methods in research with young children. Journal of Early Childhood Research: ECR, 17(1), 14–31. https://doi.org/10.1177/1476718X18808816

Centers for Disease Control and Prevention [CDC]. (2020). National Diabetes Statistics Report, 2020: Estimates of diabetes and its burden in the United States . https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf

Centers for Disease Control and Prevention [CDC]. (2022). National Diabetes Statistics Report website . https://www.cdc.gov/diabetes/data/statistics-report/index.html

Cooper

M. N.

McNamara

K. A.

de Klerk

N. H.

Davis

E. A.

Jones

T. W.

(2016). School performance in children with type 1 diabetes: A contemporary population-based study. Pediatric Diabetes, 17(2), 101–111. https://doi.org/10.1111/pedi.12243

Daughtry

Engelke

M. K.

(2018). Demonstrating the relationship between school nurse workload and student outcomes. The Journal of School Nursing, 34(3), 174–181. https://doi.org/10.1177/1059840517725790

10.

Denham

S. A.

(2003). Family Health: A Framework for Nursing. F.A. Davis.

11.

Dougherty

J. P.

(2015). The experience of siblings of children with type 1 diabetes. Pediatric Nursing, 41(6), 279–282,305.

12.

Eggenberger

Nelms

(2007). Research methodology: Family interviews as a method for family research. Journal of Advanced Nursing, 58(3), 282–292. https://doi.org/10.1111/j.1365-2648.2007.04238.x

13.

Feldman

M. A.

Anderson

L. M.

Shapiro

J. B.

Jedraszko

A. M.

Evans

Weil

L. E. G.

Garza

K. P.

Weissberg-Benchell

(2018). Family-based interventions targeting improvements in health and family outcomes of children and adolescents with type 1 diabetes: A systematic review. Current Diabetes Reports, 18(3), 1–12. https://doi.org/10.1007/s11892-018-0981-9

14.

Felix

H. C.

Narcisse

M. R.

Long

C. R.

McElfish

P. A.

(2020). Effects of a family diabetes self-management education intervention on the patients’ supporters. Families, Systems, & Health, 38(2), 121–129. https://doi.org/10.1037/fsh0000470

15.

Foley

Dunbar

Clancy

(2014). Collaborative care for children: A grand rounds presentation. The Journal of School Nursing, 30(4), 251–255. https://doi.org/10.1177/1059840513484364

16.

Freeborn

Dyches

Roper

S. O.

Mandleco

(2013). Identifying challenges of living with type 1 diabetes: Child and youth perspectives. Journal of Clinical Nursing, 22(13-14), 1890–1898. https://doi.org/10.1111/jocn.12046

17.

Gottesman

B. L.

Tanaka

Longhurst

C. A.

Kim

J. J.

(2022). Incidence of new-onset type 1 diabetes among US children during the COVID-19 global pandemic. JAMA Pediatrics, 176(4), 414–415. https://doi.org/10.1001/jamapediatrics.2021.5801

18.

Grey

Schulman-Green

Knafl

Reynolds

N. R.

(2015). A revised self- and family management framework. Nursing Outlook, 63(2), 162–170. https://doi.org/10.1016/j.outlook.2014.10.003

19.

Haegele

J. A.

Holland

S. K.

Hill

(2022). Understanding parents’ experiences with children with type 1 diabetes: A qualitative inquiry. International Journal of Environmental Research and Public Health, 19(1), 554–564. https://doi.org/10.3390/ijerph19010554

20.

Hilliard

M. E.

Powell

P. W.

Anderson

B. J.

(2016). Evidence-based behavioral interventions to promote diabetes management in children, adolescents, and families. American Psychologist, 71(7), 590–601. https://doi.org/10.1037/a0040359

21.

Hsieh

H.-F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687

22.

Jönsson

Lundqvist

Hallström

(2016). Parents HRQOL, their satisfaction with care, and children over the age of eight’s experiences of family support two years subsequent to the child’s diagnosis with type 1 diabetes. Comprehensive Child and Adolescent Nursing, 39(4), 287–300. https://doi.org/10.1080/24694193.2016.1241837

23.

Kane

Fearon

(2018). It grabs me by my neck’: Exploring children’s experience of chronic illness in Mauritania through drawings and interviews. Childhood (Copenhagen, Denmark), 25(2), 203–219. https://doi.org/10.1177/0907568217739354

24.

Kendall

E. K.

Olaker

V. R.

Kaelber

D. C.

Davis

P. B.

(2022, September 1). Association of SARS-CoV-2 infection with new-onset type 1 diabetes among pediatric patients from 2020 to 2021. JAMA Network Open, 5(9), e2233014. https://doi.org/10.1001/jamanetworkopen.2022.33014

25.

Kerr

Nixon

Wild

(2010). Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Review of Pharmacoeconomics & Outcomes Research, 10(3), 269–281. https://doi.org/10.1586/erp.10.30

26.

Lawrence

S. E.

Albanese-O'Neill

Besançon

Black

Bratina

Chaney

Cogen

F. R.

Cummings

E. A.

Moreau

Pierce

J. S.

Richmond

Mahmud

F. H.

(2022). ISPAD Clinical practice consensus guidelines 2022: Management and support of children and adolescents with diabetes in school. Pediatric Diabetes, 23(8), 1478–1495. https://doi.org/10.1111/pedi.13432

27.

Lee

M. K.

Walsh

Willgerodt

O’Connor

M. R.

(2021). School Nurses’ diabetes-related attitudes and self-efficacy in diabetes education and management. The Journal of School Nursing, 39(6), 487–495. https://doi.org/10.1177/10598405211043126

28.

Lohan

Morawska

Mitchell

(2015). A systematic review of parenting interventions for parents of children with type 1 diabetes. Child: Care, Health & Development, 41(6), 803–817. https://doi.org/10.1111/cch.12278

29.

March

C. A.

Nanni

Kazmerski

T. M.

Siminerio

L. M.

Miller

Libman

I. M.

(2020). Modern diabetes devices in the school setting: Perspectives from school nurses. Pediatric Diabetes, 21(5), 832–840. https://doi.org/10.1111/pedi.13015

30.

Marshall

Martin

Siarkowski Amer

(2018). Exploring perceptions about insulin dependent diabetes Mellitus in adolescent patients and peers. Comprehensive Child and Adolescent Nursing, 41(1), 25–41. https://doi.org/10.1080/24694193.2017.1316788

31.

Meiers

S. J.

(2016). Using family theory to guide nursing practice. In Denham

Eggenberger

Young

Krumwiede

(Eds.), Family-focused nursing care (pp. 164–193). F. A. Davis Company.

32.

Meiers

S. J.

Eggenberger

S. K.

Krumwiede

N. K.

Deppa

(2020). Measuring family Members’ experiences of integrating chronic illness into family life: Preliminary validity and reliability of the family integration experience scale: Chronic illness (FIES:CI). Journal of Family Nursing, 26(2), 111–125. https://doi.org/10.1177/1074840720902129

33.

Meiers

S. J.

Krumwiede

N. K.

Denham

Bell

S. E.

(2016). Family assessment. In Denham

Eggenberger

Young

Krumwiede

(Eds.), Family-focused nursing care (pp. 107–139). F. A. Davis Company.

34.

Messer

L. H.

Cook

P. F.

Lowe

N. K.

Hood

K. K.

Driscoll

K. A.

Hernandez

T. L.

(2022). Predicting optimal use of continuous glucose monitors in adolescents with type 1 diabetes: It’s about benefit and burden. Journal of Pediatric Nursing, 62, 23–29. https://doi.org/10.1016/j.pedn.2021.11.016

35.

Morse

J. M.

(2015). Data were saturated. Qualitative Health Research, 25(5), 587–588. https://doi.org/10.1177/1049732315576699

36.

Mouratidi

P.-S.

Bonoti

Leondari

(2016). Children’s perceptions of illness and health: An analysis of drawings. Health Education Journal, 75(4), 434–447. https://doi.org/10.1177/0017896915599416

37.

National Association of School Nurses [NASN] (2016). Framework for 21st century school nursing practice: National Association of School Nurses. NASN School Nurse, 31(1), 45–53. https://doi.org/10.1177/1942602X15618644

38.

S. M.

Corbett

Doble

Brooks

Kar

(2022). Managing the psychosocial impact of type 1 diabetes in young people. BMJ, 377, e070530–e070530. https://doi.org/10.1136/bmj-2022-070530

39.

Olson

(2022). School nursing evidence-based clinical practice guideline: Students with type 1 diabetes toolkit. National Association of School Nurses Learning Center. https://learn.nasn.org/courses/44058

40.

Persson

Gerdtham

U.-G.

Steen Carlsson

(2019). Effect of type 1 diabetes on school performance in a dynamic world: New analysis exploring Swedish register data. Applied Economics, 51(24), 2606–2622. https://doi.org/10.1080/00036846.2018.1558347

41.

Rechenberg

Grey

Sadler

(2017). Stress and posttraumatic stress in mothers of children with type 1 diabetes. Journal of Family Nursing, 23(2), 201–225. https://doi.org/10.1177/1074840716687543

42.

Rechenberg

Whittemore

Grey

Jaser

(2016). Contribution of income to self-management and health outcomes in pediatric type 1 diabetes. Pediatric Diabetes, 17(2), 120–126. https://doi.org/10.1111/pedi.12240

43.

Schulman-Green

Feder

S. L.

Montano

A. R.

Batten

Tan

Hoang

Grey

(2021). Use of the self-and family management framework and implications for further development. Nursing Outlook, 69(6), 991–1020. https://doi.org/10.1016/j.outlook.2021.05.009

44.

Shajani

Snell

(2019). Wright and Leahey’s Nurses and Families, 7e: A Guide to Family Assessment and Intervention. F. A. Davis Company.

45.

Smith

L. B.

Terry

Bollepalli

Rechenberg

(2019). School-based management of pediatric type 1 diabetes: Recommendations, advances, and gaps in knowledge. Current Diabetes Reports, 19(7), 37–36. https://doi.org/10.1007/s11892-019-1158-x

46.

Tonyushkina

Cobb

Lawson

Dunn

Pelzek

Blain

Clancy

Allen

(2021). Challenges and opportunities of engaging school nurses in a diabetes care team in a culturally diverse low income community – A mixed-methods feasibility study. Health Behavior and Policy Review, 8(5), 465–476. https://doi.org/10.14485/HBPR.8.5.7

47.

Van Gampelaere

Luyckx

Straaten

Laridaen

Goethals

E. R.

Casteels

Vanbesien

den Brinker

Depoorter

Klink

Cools

Goubert

(2020). Families with pediatric type 1 diabetes: A comparison with the general population on child well-being, parental distress, and parenting behavior. Pediatric Diabetes, 21(2), 395–408. https://doi.org/10.1111/pedi.12942

48.

Watson

S. E.

Kuhl

E. A.

Foster

M. B.

Omoruyi

A. O.

Kingery

S. E.

Woods

Wintergerst

K. A.

(2017). The impact of insurance coverage and the family on pediatric diabetes management. Pediatric Diabetes, 18(4), 315–319. https://doi.org/10.1111/pedi.12394

49.

Webber

(2020). Researching with children using Skype interviews and drawings: Methodological and ethical issues explored. Journal of Early Childhood Research, 18(4), 339–353. https://doi.org/10.1177/1476718X20938084

50.

Wilt

(2022). The role of school nurse presence in parent and student perceptions of helpfulness, safety, and satisfaction with type 1 diabetes care. The Journal of School Nursing, 38(2), 161–172. https://doi.org/10.1177/1059840520918310

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