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Abstract
Objectives To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient’s partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories.
Design Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed.
Setting/participants 63 family caregivers of 65 patients were interviewed. Of the patients, 36 (55%) had COVID-19 and 29 (45%) had other life-threatening diseases (eg, advanced cancer, dementia). The majority of family caregivers were women (83%) and children of the patient (56%).
Results Three themes were developed regarding family caregivers’ core needs across their different roles: (1) ‘feeling seen and valued’, (2) ‘experiencing trust in the provided care’ and (3) ‘experiencing guidance and security’. Actions of healthcare professionals that meet those needs relate to their contact and relationship with family caregivers, information provision, practical and emotional support, the care for the patient and facilitating the connection between family caregivers and patients.
Discussion Healthcare professionals should be trained in meeting family caregivers’ core needs, in which their (collaborative) relationship with them plays an important role. Efforts to meet the core needs should be incorporated into healthcare organisations’ workflows, and future research should investigate related barriers and facilitators.
- Supportive care
- Bereavement
- Palliative Care
- Family management
Data availability statement
No data are available.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Family caregivers of patients with life-threatening diseases have a wide variety of support needs from healthcare professionals. Literature on supporting family caregivers has mostly focused on their needs as a caregiver in the home care setting or on the needs of family caregivers of specific patient populations.
WHAT THIS STUDY ADDS
Three core needs lie at the foundation of what family caregivers need from healthcare professionals during and after the patient’s illness trajectory:
The need to feel seen and valued by healthcare professionals in their role as a valuable partner in the care for the patient, but also as a care recipient with support needs and as a child, partner or otherwise significant person to the patient.
The need to trust that the patient receives person-centred care and is well looked after with regard to medical and daily care.
The need for guidance and support from healthcare professionals in order to experience a sense of security under the circumstances.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The three core needs described in this study are of importance to all family caregivers, at all times, in all healthcare settings and across their various roles.
Healthcare organisations and professionals should aim to meet the three core needs under all circumstances, while tailoring their approach to family caregivers’ unique conditions, preferences and changing needs.
Introduction
A life-threatening illness affects not only the patient but also the people close to the patient. Those family caregivers commonly suffer from depression, anxiety, stress and physical complaints such as fatigue.1 2 In a large survey among patients with cancer and family caregivers, the latter group’s emotional functioning was found to be even lower than that of the patients.3 The impact of the patient’s disease on family caregivers’ well-being may be partly explained by the various roles they adopt in relation to the patient’s illness.4 5 First, they are co-caregivers as they play an important role in the patient’s physical and emotional care and experts on the patient’s needs and wishes. However, they are simultaneously care recipients, as they have to deal with their own emotions regarding the patient’s decline, suffering and approaching death.6 Last, they are also a partner, child or friend to the patient.4 5
In those different roles, family caregivers have a wide variety of support needs. Those needs relate to managing the disease’s impact on multiple aspects of their lives, feeling prepared for the patient’s illness trajectory and death, and assistance with caregiving tasks.7–9 According to the WHO, healthcare professionals should support family caregivers by providing information, involving them in medical decision-making, supporting them with caregiving and offering psychosocial, spiritual and bereavement support.2 However, a systematic review of the needs of family caregivers of patients with advanced cancer demonstrated that many of their needs remain unmet.10
The current literature focuses mostly on (unmet) needs of family caregivers in their role as caregivers, emphasising the need to support them with caregiving tasks in the home care setting.11 12 Less is known about their needs in their roles as care recipient and as a partner, child or friend to the patient. In addition, most of the previous studies focus on specific patient populations; often cancer or dementia.9 13 As such, the support needs of family caregivers across a wide variety of settings and patient populations have not been clearly established.
Aim
The current study aims to explore the core needs of family caregivers from healthcare professionals in their various roles across different healthcare settings and disease trajectories.
Methods
Study design
This study was part of the larger Dutch mixed-methods study ‘Support for family caregivers’ (2017–2024). In the present study, in-depth interviews with family caregivers were conducted, reported in accordance with the Consolidated criteria for Reporting Qualitative research.14 To identify the core meanings of family caregivers’ needs, a reflexive thematic approach was adopted.15 16 This approach was consistent with the researchers’ constructivist-interpretivist paradigm, in which conducting research is considered to be a process of (re)interpretation, and researchers actively engage with respondents’ stories using their own contextual understanding.
Recruitment and data collection
The inclusion criteria for family caregivers were having had a recent experience as an adult family caregiver of a patient with a life-threatening disease, and sufficient command of the Dutch language to participate. Open invitations to participate were distributed through professional and personal networks. To also reach family caregivers with a migration background and/or low literacy, two staff members of the Dutch Centre of Expertise on Health Disparities (Pharos) recruited and interviewed participants with these backgrounds. They also conducted focus groups as this interactive approach can uncover more experiences and needs in these subpopulations. It was aimed to collect a wide variety of stories from family caregivers with various backgrounds, concerning patients with different medical backgrounds in different healthcare settings and during different times. When certain healthcare settings were less commonly addressed, more targeted outreach was conducted to include more stories regarding these settings.
Data were collected in three phases: before the COVID-19 pandemic (2017), during the pandemic (2021) and when the effects of the pandemic were less prominent (2022). The interviews conducted in 2021 were all with family caregivers of COVID-19 patients. Interviews were held in person, by telephone or online. The interviews and focus groups were audiotaped and/or videotaped. All recordings were transcribed verbatim. The interviews and focus groups were guided by a topic guide based on the research objectives, concerning family caregivers’ experiences and needs during and after the patient’s illness trajectory, and the support they received or would have liked to receive. Data saturation was considered irrelevant as coding and theme development are ongoing evolving processes, always allowing new understandings and insights.17 The interviewers (HEH, MCT, AS, IDH, RS and collaborators) had experience conducting research on the topic of support for family caregivers. Some had personally experienced being a family caregiver of someone with a life-threatening disease.
Ethical considerations
The Medical Research Ethics Committee of LUMC declared the study exempt from review as the Medical Research Involving Human Subjects Act did not apply (P17.254; N21.072). All participants provided written informed consent. The researchers were attentive to the wellbeing of the participants and stressed that they were free to not answer questions. Interviewers provided participants with the necessary space and time they needed, especially when they became emotionally affected.
Analysis
Reflexive thematic analysis was performed using a largely inductive approach, as the data were leading throughout the analysis. However, the analysis was influenced by the three roles of family caregivers described above that served as a sensitising concept18 (caregiver, care recipient, and patient’s partner, child, or friend).4 5 As reflexive thematic analysis is a situated, interpretative process, the analyses were further influenced by the researchers’ own personal and professional experiences and knowledge of (supporting) family caregivers. In reflexive thematic analysis, rather than considering the researchers’ subjectivity as a source of bias, it is reflected as a valuable resource.16 Engaged in the coding process were two psychologists (HEH, MSc, female and RS, PhD, male) and a medical ethicist (IDH, PhD, female). All worked as researchers in palliative care when analyses were performed. During the first phase of analysis, transcripts of all interviews and focus groups were read to become familiar with the data and to determine provisional coding categories (eg, ‘need’ or ‘good practice’). In the next phase, meaningful quotations in relation to the research question were coded using ATLAS.ti software (V.23). Coding was done at the semantic as well as the latent level, as participants often referred to their needs without explicitly formulating it as such. Reflections, doubts and ideas emerging during coding were recorded and discussed among the three researchers. Next, all codes referring to family caregivers’ needs were discussed and divided into categories (eg, information, collaboration with healthcare professionals) during a creative session with HEH, IDH, MCT, AS, YMvdL and JTvdS. These categories formed a starting point, from which HEH and IDH engaged in discussions to develop themes that encapsulated family caregivers’ underlying core needs across all categories. Going back and forth between the themes and the coded quotations, the themes were further discussed, drafted and refined by HEH and IDH. In the final phase, feedback was sought from all coauthors to finalise the themes.
Results
In total, 63 family caregivers of patients with life-threatening diseases were interviewed. Most interviews were conducted individually, two were with two family caregivers of one patient and two were focus groups. Four family caregivers shared experiences regarding two different patients. The interviews lasted between 24 and 124 min with an average of 71 min. The majority of family caregivers were female (83%) and the patient’s child (56%). The patients had been treated in hospitals, nursing homes, hospices, at home or in multiple settings. The disease trajectories included, among others, different cancer types, COVID-19 infection, dementia, Parkinson’s disease, chronic obstructive pulmonary disease and multimorbidity. Characteristics are presented in table 1. Since professional and personal networks were used to recruit participants, some of the family caregivers had prior knowledge of palliative care and support for family caregivers or even had experience working in healthcare themselves.
Characteristics of interviews, family caregivers and patients
Family caregivers shared detailed accounts of their needs during and after the patient’s illness trajectory, from which core needs could be derived across different healthcare settings, patient diagnoses, cultural backgrounds and times. The needs related to their relationship and communication with healthcare professionals, information provision, practical and emotional support, the care for the patient, and their relationship with the patient. It is notable that during the pandemic some very fundamental needs were not met (eg, being able to visit the patient). Such needs were rarely mentioned in the other interviews, not because they were not important to those family caregivers, but because under normal circumstances those needs were not challenged and therefore not mentioned. Three themes were developed to describe the core needs of family caregivers from healthcare professionals: (1) ‘feeling seen and valued’, (2) ‘experiencing trust in the provided care’ and (3) ‘experiencing guidance and security’ (figure 1).
Family caregivers’ core needs and specific support needs from healthcare professionals.
Theme 1: feeling seen and valued
The interviews reflected family caregivers’ need to feel seen by healthcare professionals in all three of their roles. As a care recipient, they need to feel seen as a separate entity distinct from the patient, with their own experiences, perceptions and needs:
‘Just once in a while for someone to ask: ‘And how are YOU doing?’, that would be nice.’—Female, patient’s partner, home care setting, during COVID-19
An empathic, caring attitude of healthcare professionals lies at the root of feeling seen. This attitude manifests in various ways, such as taking the time to listen to family caregivers’ experiences with compassion, signalling when family caregivers are becoming overburdened and facilitating opportunities for them to still feel like a partner, child or otherwise significant person to the patient. It requires that healthcare professionals are aware of the hardships of having a seriously ill loved one and the difficulties that can be encountered:
‘Sharing your life with someone you know is going to die, that’s not easy at all. Healthcare professionals should pay some attention to this in cases like these. Because even though you carry on with life, and you make something of it, it has no future, no real future.’—Female, patient’s partner, home care setting and hospital
Family caregivers also want to feel valued by healthcare professionals as an important partner in the care for the patient. Professionals can acknowledge them as such by involving them when decisions need to be made, seriously considering their thoughts, worries and opinions, and keeping them well informed:
‘We all enter this trajectory together, right? Together. So the family, AND the healthcare team involved.’—Male, patient’s child, nursing home
It is also important to family caregivers that healthcare professionals see them as a partner, child or otherwise significant to the patient and that opportunities are facilitated to feel as such. They want the importance of their presence at the patient’s side to be acknowledged, especially in the last phase of life:
‘We were actually not allowed to be there. But I said ‘Look, it’s just me and my brother and I want us to be able to visit my mother. She’s all we have, and she only has us to visit her’.—Female, patient’s child, migration background, hospital, during COVID-19
Last, the need to feel seen extends beyond the patient’s death. After an all-consuming, emotional time with their loved one being severely ill, an abrupt end to contact with healthcare professionals can be alienating. Many family caregivers greatly value the opportunity to look back on that time together with healthcare professionals and to say goodbye to them:
‘I never heard from that neurologist again. It really felt like, okay: he is dead now, done, void. (…) They had become our life. And suddenly it all disappeared, that felt very strange.’—Female, patient’s partner, hospital, during COVID-19
Theme 2: experiencing trust in the provided care
For many family caregivers, the patient’s needs and well-being are a priority. This was repeatedly reflected in the interviews: when explicitly asked about the care for themselves family caregivers responded with a detailed account of the patient’s care. Quality care for family caregivers is obviously intertwined with the care for the patient. Consequently, family caregivers need to be able to trust that the patient is receiving the best care possible:
‘Suddenly he’s not living at home anymore and you hand over his care to complete strangers. (…) You need to know that it is okay. If you feel that it is, and he’s being taken good care of, then you have peace of mind.’—Female, patient’s child, hospice
Such trust does not only relate to medical care, but also to the extent that the patient receives person-centred care that takes into account their personal preferences and cultural background. This requires healthcare professionals taking time to do their work warm-heartedly, paying attention to the patient’s unique needs and wishes, and making an effort to get to know the patient as a person:
‘With that nurse I really felt like: well, you made an effort to understand what my mother was like in life. (…). That was definitely an added value.’—Female, patient’s child, hospital and rehabilitation centre, during COVID-19
Some family caregivers mentioned the necessity of being personally involved in the patient’s care in order to achieve such high-quality person-centred care. Their wealth of knowledge about the patient’s background helps to inform appropriate daily care practices and medical decision-making:
‘For healthcare providers: listen carefully to what the family tells you about the person, what kind of person they are, how they want to be approached, how they like to be addressed. Because, for example, they called my mother by her first name, but my mother thinks that is rude and she may not answer you at all.’—Female, patient’s child, migration background, nursing home, rehabilitation centre, during COVID-19
Family caregivers’ trust could be reinforced when the number of healthcare professionals involved was limited, when those involved collaborated well with each other, and when family caregivers were familiar with them. Furthermore, being present at the patient’s side appeared to be a prerequisite for family caregivers to experience a sense of trust. Not only because their presence as a caregiver and as a significant family member was considered fundamental to the patient’s well-being, but also so they could see the patient with their own eyes. During the pandemic, family caregivers who were not allowed to visit the patient struggled to get a good impression of the patient’s physical and psychological well-being. Being well informed about the patient’s well-being and what their days looked like, including the more positive things, could provide some peace of mind. For some, a lack of solid information during the pandemic brought about a sense of distrust:
‘I did ask ‘How is he?’. Then they give me medical information. And you have to ask in a very roundabout way: ‘Is he in his room, or is he walking around?’ It is hard work to get information from them. And that’s really annoying. It feels like they don’t really want to tell you what’s going on.’—Female, patient’s partner, nursing home, during COVID-19
For many, concerns about whether the patient was being well looked after generated worry, restlessness and frustration during the illness trajectory, which could resonate after the patient’s death.
Theme 3: experiencing guidance and security
When a loved one is diagnosed with a life-threatening disease, family caregivers start on a new path in life. They can feel lost on this journey, indicating that not only patients are care recipients, family caregivers are too. Guidance from healthcare professionals is crucial to help family caregivers feel more secure during their journey. An important element of this guidance is providing comprehensible information to help understand current events and to prepare for possible future scenarios. The kind of information needed to feel more secure can differ per family caregiver. Commonly addressed information needs relate to the medical system, the disease, its symptoms, prognosis, treatment, side effects and the dying phase:
‘If you don’t work in the healthcare sector, there’s a lot that comes at you. Suddenly you are confronted with oxygen, with morphine, with doctors, with your mother not feeling well, turning blue, unable to breathe. Of course that is scary. But they explained it really well, what happens in the lungs. Why someone is suddenly so short of breath. What happens to your face, why does it turn blue?’—Female, patient’s grandchild, home and hospice
Furthermore, having a good impression of the patient’s physical and psychological well-being, as described in the previous theme, is also important when it comes to experiencing security. As a partner, child or other significant person to the patient, family caregivers have a strong desire to understand how the patient is doing. Not knowing generates feelings of powerlessness and insecurity. This became especially apparent when visiting restrictions were in place during the COVID-19 pandemic and family caregivers could not see the patient for themselves. Consequently, the family caregivers’ impression was incomplete which could even hinder them in preparing for the patient’s death:
‘The moment they called me that they were going to stop treatment, that came out of the blue for me. Of course I always knew that it could happen, but (…) I really didn’t see it coming, that he was already so ill that he could die. (…) And when you’re physically there (…) you physically see how ill he is. And now we didn't experience that at all.’—Female, patient’s partner, hospital, during COVID-19
Another contributing factor to family caregivers experiencing security is their engagement with the patient. They need to feel engaged as caregiver. Some family caregivers described feeling powerless when healthcare professionals made decisions without informing or consulting them. But they also want to feel engaged as a child, partner or other significant family member, even more so when the patient is approaching the end of life. The basis for feeling engaged as both a caregiver and a significant family member is simply being at the patient’s side:
‘Yes, you know, you really want to hold him yourself. I say to the nurse: ‘Can you stroke my father’s head’. I really want to do that myself.’—Female, patient’s child, hospital, during COVID-19
Healthcare professionals can help prevent family caregivers neglecting their connection with the patient as a partner, child or other significant person. Such attentiveness of healthcare professionals can facilitate the creation of cherished memories that can help during the grieving process:
‘The nurses applied to the Ambulance Wish Foundation* for a wish ambulance and I am so grateful. My wife and I drove the route where I met her and the whole family was waiting there and we went to the restaurant we visited many times. So then you also have positive memories to look back on, and I really have to thank the nurse who came up with the idea for that.’—Male, patient’s partner, home care setting
*The mission of the Ambulance Wish Foundation is to give immobile people, nearing the end of life, the specialist transport and appropriate care to fulfil a wish.
Next, support with the practical aspects of caregiving, especially when the patient lives at home, is important for family caregivers to feel secure. Some imagined having a primary contact person who regularly checks in as an ideal type of support. Someone who understands the medical system and helps find answers and solutions to problems. Yet, as care recipients, family caregivers also commonly mentioned the need for psychosocial support, a need that continues after the patient’s death. It entails providing information about the grieving process and where professional support can be found if needed. Furthermore, such aftercare can help family caregivers to achieve a sense of closure, by looking back at the patient’s illness and death with the involved healthcare professionals and asking remaining questions:
‘I would have liked to ask those questions, not immediately, but two weeks later. Now these questions are running through my head, and I can’t get the answers. I will be left with that question forever.’—Female, patient’s child, home care setting and hospital, during COVID-19
The best-fitting approach to guiding family caregivers will differ per individual and may change over time, depending on factors such as the stage of the illness and family caregivers’ personality, knowledge of the medical system, cultural background, religion and customs. At the core of family caregivers feeling guided and secure is that they are familiar with the healthcare professionals and that they are approachable and take the time to answer questions. Furthermore, as family caregivers' priority lies with the patient and asking help for themselves may not be self-evident, guidance should be offered proactively. This would normalise the fact that additional support or information may be needed and it lowers the threshold to ask for it:
‘Even if they just point you in the right direction of who to call. That’s really the most important thing. Knowing that it isn’t strange to do that [ask for help]. People are reluctant to ask for help or are so consumed with their grief that they can't even think about it.’—Female, patient’s parent, hospital
Relationship between the themes
Although the three themes are described separately, they are inherently intertwined. Being guided by healthcare professionals contributes to family caregivers feeling seen and valued. In turn, being well looked after can strengthen trust that the patient is also being well looked after. The peace of mind resulting from this trust will offer family caregivers more security.
Discussion
In this study, the common ground of family caregivers’ support needs in their various roles was described. Although each situation requires a tailored approach by healthcare professionals, all approaches should always aim to meet three core needs. First, family caregivers need to feel seen and valued, not only as an important partner in the patient’s care, but also as care recipient (including after the patient’s death) and as a partner, child or friend to the patient. Second, family caregivers need to trust that the patient is receiving high-quality, person-centred care. Third, family caregivers need to have a sense of security, which healthcare professionals can enhance by guiding them as they navigate the circumstances of the patient’s illness trajectory and after their death.
Much research has been conducted on family caregivers’ needs in specific patient populations and healthcare settings. As such, many of the needs addressed in this study, such as information provision, psychosocial and practical support and maintaining a connection with the patient have been reported elsewhere, alongside other needs that are more specific to certain subpopulations.11 19 20 However, this study provides a deeper understanding by describing the underlying core meanings of what family caregivers with various backgrounds need from healthcare professionals across various healthcare settings, disease trajectories and times, including during a pandemic.
The results of this study emphasise, among other things, the importance of family caregivers’ involvement in the patient’s care. Previous studies have reported the same, but mostly in relation to family caregivers’ role as caregiver by highlighting the necessity of their involvement in providing high-quality care to the patient21 22 while also mentioning the beneficial effect this can have on their own well-being.23 The current study extends this understanding by emphasising the importance of their involvement to accommodating their core needs. Family caregivers’ involvement is needed for them to feel acknowledged and to have some peace of mind regarding the patient’s care, which in turn helps them to experience a sense of security.
It appears from this study that the relationship between family caregivers and healthcare professionals is also of great importance to meeting family caregivers’ core needs. The importance of healthcare professionals being familiar, empathic and personally engaged has been emphasised before.24 25 Experiencing a good relationship with healthcare professionals strengthens family caregivers’ trust and lowers thresholds to ask for information and support for themselves,26 27 confirming it contributes to all three core needs. Taking this into account, nursing staff play an important role in meeting family caregivers’ core needs as they generally spend the most time at the bedside which facilitates relationship building.28 Furthermore, it is important that continuity of care is ensured by healthcare organisations.
Although the importance and value of supporting family caregivers is generally recognised by healthcare professionals, incorporating it into practice can be challenging.29 Existing literature has emphasised the importance of support for family caregivers being ingrained on the organisational level for it to become structurally embedded in daily practice.30 As such, it is essential that healthcare organisations incorporate the support for family caregivers in their workflows to meet the three core needs. Still, as demonstrated by a scoping review of the literature, some components of support for family caregivers become more easily embedded (eg, providing information) in workflows than others (eg, family assessment).29 Especially accommodating family caregivers’ needs with regard to maintaining their original relationship with the patient during the illness trajectory appears to be a challenging aspect, even to nurses specialised in palliative care.31 A lack of healthcare professionals’ skills poses a barrier to supporting family caregivers,32 which highlights the importance of support for family caregivers being embedded in healthcare professionals’ training and education. At all times, it should be taken into account that how the needs are best met will differ depending on various factors such as the specific situation, family caregivers’ personality and cultural background, and their relationship to the patient.33 34 Needs assessment tools may contribute to tailoring to specific needs.35 Furthermore, healthcare professionals should always be aware that their own beliefs about what is important surrounding death and dying may differ from those of family caregivers, especially when family caregivers come from different cultural backgrounds. In these cases, it is important for healthcare professionals to acknowledge these divergent beliefs, adopt a non-judgemental and respectful approach and to incorporate faith and spirituality into care where appropriate.36
Future research should investigate how commonly reported barriers to supporting family caregivers may best be overcome, such as a lack of time, a lack of interdisciplinary collaboration and limited continuity of care.37 38 Collaboration between the professional healthcare sector and the social care sector presents an opportunity to overcome some of these barriers. Future research could explore the current role of the social care sector in supporting family caregivers, as well as strategies to enhance collaboration with the professional healthcare sector.
Strengths and limitations
A strength of this study is that by analysing a large number of interviews across different healthcare settings and disease trajectories, a common ground could be formulated of family caregivers’ support needs in all their roles. Second, as the study’s results are more broadly applicable since they are not limited to a specific demographic (e.g., a quarter of the respondents had a migration background) or healthcare context, the findings are of international relevance. Furthermore, by focusing specifically on what family caregivers need from healthcare professionals, the findings are directly relevant for professionals in palliative care. Last, by including family caregivers during the COVID-19-pandemic, essential needs were brought to the surface that might otherwise have remained hidden.
This study also has limitations. First, most of the respondents were female, yet gender differences are known in family caregivers’ experiences and outcomes.[39] Furthermore, most of the respondents had a higher level of education. Last, the use of video conferencing software and telephone for some of the interviews may have influenced the interviewing process, even though neither interviewers nor family caregivers reported negative experiences.
Conclusion
This study has provided a deeper understanding of what family caregivers of patients with life-threatening diseases need from healthcare professionals in their different roles during and after the patient’s illness trajectory. They need to feel seen, valued and guided in their roles as caregiver, care recipient and as a partner, child or friend to the patient. Further, a prerequisite to having peace of mind is being able to trust that the patient is being well looked after. Efforts to meet these core needs should be incorporated into the workflows of healthcare organisations. Healthcare professionals can meet family caregivers’ core needs in numerous ways and should be trained and educated accordingly. Their approach should be tailored to the unique needs and preferences of individual family caregivers.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Acknowledgments
We thank all family caregivers who participated in this study. Furthermore, we thank Dr Carolien Smits and Sali Alhaiji, MSc. of the Dutch Centre of Expertise on Health Disparities (Pharos) for their collaboration. Finally, we thank Nienke Boogaard for her contribution and Maggie Oattes for translating the quotes and editing the manuscript.
References
Footnotes
X @lvanbodegomvos
Presented at Portions of this manuscript were presented at the 2023 World Congress of the European Association for Palliative Care.40
Contributors MCT, YMvdL, JTvdS, LB, IDH, AS, and HEH contributed to the design of the study. MCT, AS, IDH, and RS were involved in data collection. IDH, HEH and RS coded the transcripts. IDH and HEH developed the themes, while seeking input from MCT, JTvdS, AS and YMvdL. HEH drafted the manuscript under close supervision of IDH. All coauthors were involved in the critical revision of the manuscript and approved its final version. IDH acts as guarantor for this manuscript.
Funding The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by The Netherlands Organization for Health Research and Development (grant numbers 844001312, 844001804 and 844001706).
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.