Providing Telephone-Based Support for Patients With Haematological Malignancies: A Qualitative Investigation of Expert Nurses

Background

Haematological malignancies are neoplastic diseases of hematopoietic and lymphoid tissues including leukaemia, lymphoma and myeloma (Jurlander, 2011). This spectrum ranging from low-grade to aggressive diseases encompasses various therapeutic programs ranging from watchful waiting approaches to demanding chemo-immunotherapy, stem cell transplant and cellular therapies. Patient management is shifting towards fewer and shorter duration of hospital stays (Bertucci et al., 2019), with greater volumes of cancer care delivered in the outpatient setting in an attempt to provide an efficient and cost-effective way to meet increasing needs (Lai et al., 2019). While long-term survival following diagnosis with a haematological cancer is improving (Pulte et al., 2020), survivorship often necessitates ongoing support.

Patients affected by haematological cancers report altered quality of life not only in terms of general health but also across physical, functional and cognitive domains, with psychological quality of life being worst affected (Allart-Vorelli et al., 2015). Psychological and physical aspects of daily living are repeatedly described as unmet needs (Barata et al., 2016; Boyes et al., 2015).

Virtual models of care using technologies such as telephone or video conferencing to remotely deliver interventions to meet patients’ needs, can improve accessibility to services, provide flexible scheduling and reduced travelling for patients (Ownsworth et al., 2021). Mobile phones are the leading gateway to information and technology (Parasuraman et al., 2017), with increasing evidence of telephone-based interventions for cancer patients. Symptom management is one focus where such interventions exist (Ream et al., 2020) including oral mucositis and dehydration prevention in patients undergoing radiotherapy (Ruegg et al., 2021), and toxicity monitoring in patients receiving oral cancer drugs (Bouleftour et al., 2021). Telephone delivery of behavioural and educational interventions are also described including dietary counselling for prostate cancer patients (Parsons et al., 2020), managing fear of breast cancer recurrence (McHale et al., 2020) and exercise interventions (Morrison et al., 2020).

In the haematology setting, endeavours to address unmet needs have included telephone and web-based interventions to reduce unmet needs, anxiety and depression (Stevenson et al., 2020), telephone counselling to increase aerobic exercise (Vallerand et al., 2019), survivorship programs with problem solving interventions (Syrjala et al., 2018) and telephone support during chemotherapy to reduce unmet supportive care needs (Ebrahimabadi et al., 2021).

Virtual methods for care delivery have recently seen an unprecedented increase. The coronavirus disease 2019 (COVID-19) pandemic has spurred a general shift from face-to-face towards telehealth delivered services (Wosik et al., 2020). Strategies to reduce transmission of this viral disease include social distancing, limiting unnecessary journey’s and reducing in-person care. However, the need for treatment, continuity of care and remote access to information and support in this period are still required (Andrews et al., 2020; Chan et al., 2020; Wosik et al., 2020).

Nurses have a pivotal role in caring for patients with haematological malignancies across their treatment pathway, frequently being central to service developments employing telephone-based interventions to address the needs of patients. While remote healthcare models and interventions are increasingly being investigated, it is recognised that acceptance by staff involved in delivery is central their success and use (Du Toit et al., 2019; Ward et al., 2008).

Purpose

Acceptability is a necessary component for healthcare intervention effectiveness, recognising not only the recipient’s perceptions but also those of the individual delivering the intervention as regards cognitive and emotional responses to the intervention (Sekhon et al., 2017). There is paucity of literature describing nurses’ perceptions of telephone-based care, both in terms of its role and utility in addressing patients’ needs, and the needs of nurses themselves in providing such care. Qualitative methods were employed with the purpose of gaining an in-depth insight to investigate nurses’ perceptions of the following questions:

What are the perceived needs of haemato-oncology patients during treatment and post-treatment phases of the cancer trajectory? To what extent can these be met by a telephone-based supportive intervention?

Methods

Setting and participants

Semi-structured focus groups were planned to be held during an international conference focusing on haematology and stem cell transplantation. Following approval from a University Research Ethics Committee, expert nurses were invited to participate.

A purposive sampling technique was adopted with the aim of identifying participants with experiences relating to the argument of interest but with some diversity within the group to enable enquiry into the impact of the experience/characteristic (Ritchie et al., 2003). Nurse experts were felt to be key informants, able to provide insight, and experiential knowledge of the research topic. A maximum variation strategy promoted within group differences in terms of roles, service level responsibilities, geographical location of practice and variation in nursing care contexts.

Expert nurses known to one researcher through a specialist European haemato-oncology network, and meeting the inclusion criteria (Table 1) were identified by one researcher and sent an email with the Participant Information Sheet and Consent Form, inviting them to take part in the study with details of the focus groups.

OPEN IN VIEWER

Table 1.

Participant inclusion and exclusion criteria.

Inclusion criteria	Exclusion criteria
• Registered Nurse • Expert nurse (practicing in haemato-oncology for at least 5 years) • Available to attend the location and time of proposed focus group • Providing written consent to participate in the focus group	• Unable to communicate clearly in spoken English (the focus group was held in English language)

Data collection and analysis

All but one participant wished to attend the second date, and data collection therefore became one focus group and one individual interview. The interview and focus group were held in a private room at the conference centre. After having provided written consent, participants took part in the interview or focus group which were semi-structured following a topic guide based on a systematic review of the literature (Liptrott et al., 2018) (Table 2). The focus group/interview were in English language, digitally recorded and transcribed verbatim by one researcher.

OPEN IN VIEWER

Table 2.

Semi-structured focus group topic guide for expert nurses.

The questions in the topic guide will include but are not limited to:

1. What are the needs of haemato-oncology patients during treatment and post- treatment phases of the cancer trajectory as perceived by nurses and to what extent are these met?

2. What are expert nurses perceptions/experiences of the telephone based supportive interventions of patients with haematological malignancies (HM’s)?

3. Are there particular groups of patients with HM that would benefit from support and do you think a telephone-based intervention is feasible?

4. What are the barriers and facilitators for patients in participation in a telephone support intervention?

5. What are the barriers and facilitators to qualified healthcare professionals in delivery of a telephone support intervention?

Data was analysed inductively and deductively using framework analysis (Gale et al., 2013). Deductive analysis was framed using the Theoretical Framework of Acceptability (Sekhon et al., 2017). A coding framework was developed by one researcher and checked across transcripts. Codes were derived from data and grouped into coherent themes by a single researcher and reviewed by all researchers. Research reporting is in line with COREQ checklist.

Results

Discussion

In this study, we explored expert nurses perceptions of haemato-oncology patients needs and the use of telephone based interventions to address such needs. Findings from this qualitative investigation of expert nurses support the idea that individual patients coping strategies were one factor in dictating need. Positive psychological resources such as optimism, self-efficacy and resilience are correlated with lower psychological distress for some haemato-oncology patients (Wang et al., 2016). The evolving and temporal nature of coping, influenced by gender, age and socioeconomic status (Diehl et al., 2014; Pasvolsky et al., 2019) would suggest coping is a mobile concept worthy of re-evaluation to address unmet needs.

Expert nurses described how the acuteness or chronicity of disease also influenced patients’ need for support where intensive support was necessary in the early stages for patients with acute disease. This is consistent with LeBlanc et al., (2017) who describe patients affected by acute leukaemia often facing shock, sudden and significant impact on health, and limited time to make quick decisions about treatment. Instead, those with chronic diseases were perceived by study participants to require protracted support, findings compatible with adaptive behaviour being formed through initial denial, then seeking social support and self- control (Stepanchuk et al., 2013), elaborating emotions over time. Expert nurses considered treatment and symptom experience also affected the needs of patients, a finding described within the literature especially in relation to intensive regimens. Physical symptoms and burden are reported alongside cognitive-emotional and practical problems in patients post allogeneic or autologous SCT (Braamse et al., 2014). Links between physical well-being and emotional health and quality of life (Naughton & Weaver, 2014) imply persistent physical effects of treatment may have broader sequela. Nurses in this study advocated for patient-led support and patient choice, findings which acknowledge that the desire for support cannot be assumed even where levels of distress are high (Merckaert et al., 2010). A multifactorial influence on individual patients needs would indicate regular holistic assessment is necessary to identify needs and what patients want help with and when.

Patients’ information needs were a key theme, described by expert nurses as being individual and predominant within transition periods across the cancer pathway. These results agree with previous research investigating information needs of patients with haematological diseases (Gansler et al., 2010). Participants in this study emphasised the need for information re-iteration and revisiting information needs. Possible explanations may include difficulty in processing information in the initial stages of acute and life-threatening haematological diseases (LeBlanc et al., 2017), and the persistence of unmet information needs throughout the trajectory in 40–70% of patients (Rood et al., 2015). Access to accurate and up-to-date information are essential elements for haematology patient care (Bryant et al., 2018), however literature suggests this is impeded through lack of information tailoring, ineffective communication, patients affective state and clinician availability (LeBlanc et al., 2019). Expert nurses in this study described themselves as gatekeepers to information for patients, providing what they saw as relevant information at key time points. Findings suggest incongruence between what patients want and what healthcare professionals are providing, again reflecting different information requirements and the need to revisit this issue with patients.

Expert nurses felt patients needed continuity of care, an argument where conflicting discourses emerged. A close relationship between the specialist healthcare team and patient facilitated communication, provided reassurance, trust and was perceived to reduce unmet needs. However, expert nurses spoke of their own role in fostering patient dependency on specialist service, further ingrained by non-specialist healthcare professional’s reticence to address haemato-oncology patients’ needs. These findings are unsurprising as primary care physicians describe barriers to care of including a lack of resources, awareness of screening and prevention guidelines, time and how to address psychosocial needs of haematology patients (Mani et al., 2020). Approaches such as education and training for community based non-oncology specialist healthcare professionals may be one approach to facilitate skill development and build confidence in patient management (Nekhlyudov et al., 2017), as well as reinforcing the concept of shared care with patients themselves.

Expert nurses perceptions in light of the Theoretical Framework of Acceptability provided important information regarding stakeholder engagement in a telephone-based intervention for support and symptom management. The variety of benefits reported by expert nurses impacted positively on affective attitude and feelings about telephone-based interventions, coinciding with findings of a systematic review of cancer survivors’ perceptions of telehealth ( Cox et al., 2017). Findings in this study suggested interventions provoked negative feelings where nurses felt unable to provide the planned intervention or it compromised safety. Clarifying the purpose and expectations of each of the parties involved in the intervention could be a way to improve participant experience, therefore encouraging collaboration and partnership (Jernigan et al., 2020).

Findings from expert nurses evidenced how the ethicality of such an intervention was influenced not only by individual values but also the context in which care is to be delivered. In this study, nurses highlighted clinical situations where support could be delivered without compromise included palliative care, similar to findings by Steindal et al., (2020) describing a genuine relationship providing reassurance through telehealth in palliative home care. Telephone consultations imply limited evaluation and the need for intuition in the absence of full physical assessment (Pedersen et al., 2020), and results from this study suggest the absence of visual assessment and cues restricted necessary comprehensive evaluation in complex situations. Recent literature suggests that both patients and healthcare providers report satisfaction in relation to the use of telehealth during the COVID-19 pandemic (Andrews et al., 2020; Dalby et al., 2021), however satisfaction may depend on what is feasible rather than that which is preferable. Similarly, addressing sensitive and emotive issues by telephone was challenging for some expert nurses, a finding reflected by patient’s perceiving a lack of emotional support from healthcare professionals during telephone-based interventions (Mordenti et al., 2013).

Concerning self-efficacy, participants described nurses as well placed to deliver such supportive interventions having a holistic approach to patient care, with experience and knowledge of the disease and patients’ pathway, however telephone-based interventions go beyond the traditional nurse-patient relationship. The components of a telephone intervention providing support described by participants in this study support the process of telephone nursing described by Greenberg (2009) – gathering information, cognitive processing and output of nursing action to meet patients’ needs. Competencies for nurses providing telehealth include developed communication and coaching skills, clinical knowledge, ethical awareness, and a supportive (van Houwelingen et al., 2016). In this study, complementary training was said to be necessary to enhance communication skills and perceived self-efficacy. These results agree with findings suggesting additional training for nurses across telehealth platforms (Andrews et al., 2020), and adoption of best practices for communication in virtual cancer care (Banerjee et al., 2021).

For a minority of expert nurses in this study, a prior relationship between the nurse-caller and patient was unnecessary particularly where an intervention was solely for symptom monitoring. Published literature suggests patients are reluctant to ask questions or discuss emotional issues with an unknown health professional ( Cox & Wilson, 2003), which would suggest a previous relationship may be key to a more holistic approach to needs assessment.

Results suggested engaging in structured telephone interventions to provide support inferred opportunity costs and burden. Findings suggested material resources to perform interventions were easily available, however lack of nursing resources and increased workload were described by these nurses as barriers to intervention implementation and sustainability. Trust as a basis for optimal care outcomes (Matusitz & Breen, 2007) may be affected where inadequate resources affect intervention delivery causing the caller to renounce personal values. These issues support the wider literature on implementation promoting the integration of evidence-based practice and research into routine care in order to improve health service care, quality and effectiveness (Eccles & Mittman, 2006). By seeking to address the issues raised, staff engagement can be improved and integration of new practices can be facilitated.

There was overall agreement within the group of expert nurses that knowing the patient was key to identifying who, where, when and what supportive care was desired and would be beneficial to patients, guiding intervention effectiveness and coherence. Content and timing of an intervention were also said to be determined by individual patient need and clinical factors, concurring with the concept of a complex intervention by the nature of multi-factorial components (Craig et al., 2013). This study highlighted the importance of flexibility, and exploring issues raised by patients. These findings are in agreement with evaluation of nurses’ telephone communication with callers, identifying how limiting investigation to the single symptom of concern ran the risk of missing hidden causes (Ernesäter et al., 2016), and supporting the need for holistic assessment. In addition, questions verifying comprehension and acceptance of advice are also suggested, essential for patient safety (Kaminsky et al., 2009).

Strengths and limitations

This study provides an in-depth exploration into expert nurses’ perceptions and experiences with telephone-based support for haemato-oncological patients, providing evidence in an area where research is limited. It provides insight into the perceived needs of patients from expert nurses directly involved in patient care, service development initiatives, and also opinions regarding the feasibility, barriers and facilitators to telephone-based care interventions.

The study also has limitations that are recognized. Although expert nurses from various countries and nursing roles were incorporated within the qualitative data collection process, it is acknowledged that this does not signify transferability to other contexts. At the outset of the study, multiple methods of data collection were not intended, however where one expert nurse was the only one selecting the first of the two dates given for the focus group, an individual interview was performed. The combination of interview and focus group data collection methods merits reflection on its validity, as it is suggested that an ad hoc approach to data combination may impact of the trustworthiness of findings (Morse, 2003). The rationale for proceeding with this method of data collection was both practical – to address participant convenience, and pragmatic – determined by the perceived important contribution that the expert nurse could add to the area of investigation.

Expert nurses were asked to identify the needs of patients with haematological malignancies so as to provide a focus for describing areas where telephone interventions may address need. Whilst within their practice, they have significant experience of patient’s conditions and symptoms, it is acknowledged that there is a variation in the congruence between proxy reporting by healthcare professionals and patients own rating of their symptoms, often being underestimated (Laugsand et al., 2010). However as expert nurses are often providers of initiating and delivering telephone interventions, it is important to gauge their perceptions of patient’s needs, and it allows for comparisons with patients self-reported needs and triangulation of results.

Conclusion

Telephone based interventions are increasingly being used in healthcare initiatives and the opinions of nurses as service providers in this field requires investigation. This study with expert hemato-oncology nurses provides insight into the perceptions of their patients’ needs and their experience in use of telephone interventions to address such needs. Expert nurses described how patients’ needs across the trajectory were dependent on multiple internal and external factors and as such models for telephone-based interventions would therefore be based on the requirements of the particular situation and need being addressed. Careful and appropriate selection of both patients and the applicability of a telephone intervention to address the need are necessary to make an intervention feasible and successful. Acceptability for those delivering telephone interventions must reflect organisational support and appropriate resource allocation. While telephone is an accepted method of communication, there needs to be a clear, established and comprehensive infrastructure to successfully add a telephone support intervention into clinical practice.