The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis

Abstract

While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild’s illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: “Navigating complex and unclear roles to support the family” and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents’ autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents’ perspectives and need for support.

Introduction

Grandparents are increasingly acknowledged for their involvement in pediatric end-of-life care of children with cancer (Benini et al., 2022; Bergstraesser & Flury, 2018), and often take on multifaceted and difficult roles when faced with their grandchild’s illness (Hall, 2004a, 2004b; Mendes-Castillo & Bousso, 2016; Moules, McCaffrey, et al., 2012) and death (Gilrane-McGarry & OGrady, 2012; Tatterton & Walshe, 2019a,b; Tourjeman et al., 2015).

For many children with cancer and their families, home is the preferred location for end-of-life care and death (Bluebond-Langner et al., 2013; Virdun et al., 2015; Winger et al., 2020). However, home-based end-of-life care entails a substantial caregiver burden for the child’s immediate family (Malcolm et al., 2020; Winger et al., 2020), with complex care tasks to be managed in a close collaboration between the family and professionals (Bergstraesser & Flury, 2018; Papadatou et al., 2011).

The dynamics of families and intergenerational care has undergone changes in recent decades, with grandparents now sharing a longer period of healthy lifespan with their grandchildren (Coall & Hertwig, 2010), due to an increased life expectancy and improved health in later life (Margolis & Wright, 2017). It is common that grandparents provide emotional, financial and instrumental support to the younger generations in the family, including taking care of their grandchildren (Bengtson, 2001; Coall & Hertwig, 2010; Szydlik, 2008). Especially in times of problems or crisis, the “latent network” of family, including grandparents, are found to provide or enhance their support to the younger generations (Bengtson, 2001; Wong et al., 2020). Accordingly, when a child has cancer, the grandparents may be placed in a central role, supporting the entire family (Charlebois & Bouchard, 2007; Dias & Mendes-Castillo, 2021; Flury et al., 2020; Mendes-Castillo & Bousso, 2016; Tatterton & Walshe, 2019a).

This may involve a considerable emotional strain on the grandparents (Kelada et al., 2019; Youngblut et al., 2015), including impaired quality of life (Wakefield et al., 2017), mental health (Wakefield et al., 2014a, 2017; Youngblut et al., 2015), and family functioning (Kelada et al., 2019). Previous research on grandparents of critically ill children has described their “double worry” about both their grandchild and their own child (Hall, 2004a, 2004b; Moules et al., 2012), and a “double pain” in bereavement, with concurrent grief about their own loss and the pain associated with their child’s grief (Flury et al., 2020; Gilrane-McGarry & O Grady, 2012). It has previously been described that individual family members are interdependent in coping with grief (Stroebe & Schut, 2015). Accordingly, variations in coping strategies and grief trajectories among family members are often already at play in the pre-death phase (Nielsen et al., 2016; Treml et al., 2021), and may cause emotional tension in the family, and contribute to the grandparents’ suffering.

Previous qualitative studies on grandparents of children with cancer have mainly focused on either their experiences of their grandchild’s illness course (Charlebois & Bouchard, 2007; Dias & Mendes-Castillo, 2021; Mendes-Castillo & Bousso, 2016; Moules, McCaffrey, et al., 2012; Moules et al., 2012), or solely on their bereavement and grief experiences (Nehari et al., 2007; Tatterton & Walshe, 2019a). Furthermore, there is a lack of knowledge on the experiences of grandparents of children receiving end-of-life care and dying at home. In our previous study of intersectoral collaboration in home-based end-of-life care, we found grandparents to be a valuable resource in the care and support of their grandchild with cancer and of the family, but they also expressed a number of concerns and unmet needs (Hammer et al., 2023). Therefore, the aim of this study was to explore the experiences of grandparents involved in the home-based care of their grandchild with cancer during the end-of-life care period and through bereavement.

Materials and methods

Design

This study is based on a secondary supra analysis (Heaton, 2008) of interview data, which we originally collected for a qualitative multiple-case study designed to explore intersectoral collaboration in home-based end-of-life pediatric cancer care, from the perspectives of bereaved parents and grandparents, and psychosocial and health care professionals from the hospital and community (Hammer et al., 2023). While the data were originally collected to fulfill a different research aim (Hammer et al., 2023), the in-depth and rich descriptions from the participating grandparents warranted further exploration that was not sufficiently addressed in our primary analysis. Accordingly, we carried out a secondary analysis on a subset of the original data, i.e., based on only our interviews with bereaved grandparents.

Setting

The study was conducted in the Capital Region of Denmark, where home-based pediatric end-of-life care takes place in collaboration with the child and family, the specialized pediatric palliative care team, the hospital’s pediatric oncology team, and community-based professionals (Hammer et al., 2023). Specialized pediatric palliative care teams were established in all Danish regions during 2015–2017. The interdisciplinary teams consist of health care professionals (e.g., physicians and nurses) and psychosocial professionals (e.g., social worker and psychologist), who are all specialized in pediatric palliative care. The teams provide hospital- and/or home-based palliative care targeting children and adolescents (<18 years old) with life-limiting and -threatening diseases, and complex symptoms or problems implying the need of specialized and interdisciplinary palliative care. When a child receives home-based specialized pediatric palliative care, the child and family have continued access to the hospital’s pediatric oncology team (e.g., pediatric oncologists and oncology nurses), offering in-hospital examinations and treatment. In addition, community-based professionals (e.g., home care nurses, general practitioners, and social workers) from the child’s municipality of residence can be involved as required (Hammer et al., 2023). Each year approximately 5–7 children and adolescents with cancer, referred to the specialized pediatric palliative care team of the Capital Region of Denmark, receive home-based end-of-life care and die at home. Due to the Danish tax-financed healthcare system, hospital- and home-based care is free for the children and their families.

Sampling, population and recruitment

Participants were included using criterion sampling (Patton, 2002). For our original study (Hammer et al., 2023), we included family caregivers (i.e., bereaved parents and grandparents), and community- and hospital-based professionals who had been involved in the end-of-life care of a child, who: (1) received home-based palliative care; (2) died from cancer at home at age <18; (3) died ≥3 months before recruitment; and (4) whose parents had provided consent to contact ≤1 year before recruitment. A member from the specialized pediatric palliative care team informed parents of all eligible children about the study and invited them to participate, and grandparents and professionals were invited upon receipt of the parents’ consent (Hammer et al., 2023). In the current study, we included only the bereaved grandparents in our secondary analysis of data. The grandparents were identified and informed about the study by the participating parents. Interested grandparents were subsequently contacted by the research team who provided verbal and written study information, and collected written informed consent to participate (Hammer et al., 2023).

Data generation

Grandparents participated in semi-structured interviews (June 2020–March 2021) based on a semi-structured interview guide with open-ended questions (Hammer et al., 2023). All interviews started by asking the grandparents to tell about themselves, their grandchild and how they experienced it when their grandchild became ill. Other examples of questions were: “What was your role in relation to [grandchild/parents] when [grandchild] became ill and received care and treatment at home?” and “How did you experience the communication and the information you got in connection with [grandchild’s] care and treatment at home?”. The interview guide is published in full length elsewhere (Hammer et al., 2023). Grandparents were interviewed face-to-face by the first author, N.M.H., in their homes or at the hospital, and either individually or as a pair, according to their preferences. Due to the sensitive nature of the interviews, careful considerations were taken into account before the interviews, including conducting the interviews at the time and location of the grandparents’ choice (Dempsey et al., 2016; Dyregrov, 2004; Hynson et al., 2006), and carefully considering the atmosphere, pace and duration of the interviews to meet the individual grandparent’s needs (Hynson et al., 2006). Furthermore, through lack of time restrictions and through attentive listening, the interviewer allowed the grandparents to share experiences and memories of their deceased grandchild outside the scope of the research aim. Interviews were audio-recorded and transcribed verbatim.

Data analysis

For the current study, secondary supra analysis (Heaton, 2008) was performed using clean and uncoded transcripts from our original study (Hammer et al., 2023), only including the transcripts from the grandparent interviews. Data were analyzed inductively, following the principles of qualitative content analysis (Graneheim & Lundman, 2004). N.M.H read the full-length transcripts thoroughly, followed by re-reading while marking all meaning units (i.e., sentences or paragraphs) related to the focus of the current study, i.e., the grandparents’ experiences during their grandchild’s end-of-life and through bereavement. Subsequently, N.M.H condensed the meaning units into shorter descriptions, closely adhering to the meaning of the text, and labeled them with descriptive codes, which were used to compare, sort and form categories with related content. In a collaboration between all coauthors, the categories were abstracted and interpreted to form an overarching theme, themes and sub-themes, expressing the interpretative, underlying meaning of the categories (i.e., the latent content) (Graneheim & Lundman, 2004). An example of the different steps in the analysis process is provided as supplementary material. N.M.H. performed the initial analysis and categorization, and all coauthors met continuously during all steps of the analysis to discuss and reflect upon the analysis and findings. Analyses were performed using NVivo 13 (2020, R1) (Lumivero, 2020).

Researcher characteristics and reflexivity

Our research team members have a background in medicine, nursing, psychology, sociology, and/or health science, together with extensive experience in qualitative research, pediatric cancer, and/or palliative care. N.M.H, who conducted all interviews and the initial analysis, had not been previously involved in the children’s care and did not have any prior professional or personal interaction with the children or their families. Our preconceptions and their potential effects (Malterud, 2001) were discussed throughout the study. Accordingly, in meetings and discussions, we strived to make visible our own and each other’s preconceptions, by identifying, articulating, and reflecting upon if and how our previous professional and personal experiences and perspectives potentially affected our assumptions, interpretations, and findings. In this process, we drew on our interdisciplinary research team, and our diversity of professional backgrounds, knowledge, and experiences. Furthermore, to ensure consistency between our findings and the context from which they originated, we applied an iterative process of moving back and forth between the themes and the original transcripts.

Ethics

All grandparents received verbal and written information, provided written informed consent, and were informed that their participation was voluntary, that they could withdraw at any time, and of the opportunity to have a consultation with a psychologist from the pediatric palliative care team after their participation. The study has been assessed by the Danish Ethics Committee of the Capital Region (H-19008026), finding it non-notifiable, in accordance with Danish legislation. The study was approved by the Danish Data Protection Agency (VD-2019-250/P-2021-209) on June 24, 2019 (approved amendments on March 11, 2021 and on July 12, 2021). To protect the families’ confidentiality and privacy, no detailed demographic or clinical characteristics are disclosed in this paper.

Results

Participants

In our original study (Hammer et al., 2023), six children were eligible for inclusion, of whom one’s parents declined participation. Parents of the five remaining children all identified at least one grandparent, who had been involved in their child’s end-of-life care at home. Eight eligible grandparents of five children with cancer were informed about the study, of whom one declined participation. Accordingly, in the current study, we included six grandmothers and one grandfather who had been involved in their grandchild’s (n = 4) end-of-life care. Five grandparents were retired, while the remaining two were working part-time during their grandchild’s end-of-life (Table 1). Five grandparents were interviewed individually and two were interviewed as a couple (interview mean duration: 1h 42 min; range: 52 min–2 h 26 min).

Table 1. Characteristics of grandchildren and grandparents.

Deceased grandchildren (n = 4)	n
Sex
Female	2
Male	2
Diagnosis
Malignant brain tumor	4
Age at time of death
0–5 years	1
6–12 years	1
13–18 years	2
Bereaved grandparents (n = 7)	n
Relation to child
Grandmother, maternal side	3
Grandmother, paternal side	3
Grandfather, paternal side	1
Occupational status^a
Working	2
Retired	5
Civil status
Married/cohabiting	4
Divorced/widowed	3
Time since grandchild’s death^b
6–12 months	1
12–18 months	5
≥18 months	1

^a At time of grandchild’s end-of-life.

^b At time of interview.

Themes

Five themes and 11 sub-themes described the grandparents’ experiences during their grandchild’s end-of-life care period and through bereavement (Table 2).

Table 2. Overview of the themes.

Overarching theme	Themes	Sub-themes
Navigating complex and unclear roles to support the family	Providing comfort and support	- Being present and supporting emotionally
		- Offering respite and practical support
	Balancing and adapting involvement	- Playing the “guessing game”
		- Treading cautiously
	Worrying silently	- Managing a challenging double role
		- Disregarding own needs and staying strong
	Managing difficult emotions	- Bearing the unbearable
		- Sharing memories and marking special days
	Calling for support and understanding	- Missing support for grandparents as caregivers
		- Searching for grandparents in the same situation
		- Living with taboos and misunderstood considerations

The themes were bound together by an overarching theme, “Navigating complex and unclear roles to support the family”, covering the grandparents’ descriptions of their overall role during the end-of-life care and through bereavement as being there to offer any kind of support needed by their ill grandchild, its siblings, and parents.

It has been a gift that I was able to be there so close to them and, like, “Well, I’m here if you need me”. And I could take over right away if anything came up. Whether it was a shoulder or whatever. And then just stand and be the strong one. Because I had to be […] It was me who had to be strong for them when the world collapsed.

This unconditional support was sometimes at the expense of the grandparents’ own needs, and they could struggle to understand the needs of the family and to time their support accordingly.

It is really important that you are there for each other and support each other as much as you can. And also at such difficult times, because it is precisely then that it is really needed. And it is not that we do things right all the time, not at all. But, roughly, it’s that you can be there.

Providing comfort and support

This theme concerns the grandparents’ multifaceted tasks and various forms of emotional and practical support for their grandchild and the family during the end-of-life care period and after the grandchild’s death.

Being present and supporting emotionally. The grandparents described themselves as being available and present, when needed, at any time and in any setting. The grandparents prioritized spending as much time as possible with their grandchild, engaging in shared activities, and showing and sharing their love and affection.

We have been blessed with two and a half years. And I have been there all along. Saw the family, saw the children, and saw the progress. Sitting in her room and then sitting on her bed and sleeping alongside her in the afternoon and holding her. So, I think the course has been wonderful, given that it had to be like that.

The grandparents’ support also included multifaceted emotional support for the grandchild’s parents, including offering comfort and attentively listening to joys and worries, hope and hopelessness, and the intense grief following the grandchild’s death.

Offering respite and practical support. The grandparents described providing different kinds of practical support, including taking care of siblings, preparing dinners, and other household chores. Also, some were directly involved in their grandchild’s medical and personal care, collaborating with the parents on the day-to-day care needs in the home. The grandparents described wishing to alleviate some of the parents’ burden, which also involved providing unsolicited support, and continuing to offer practical support during bereavement.

But they were so focused and tired that they hardly even had the energy to ask for help. So, I came up with things where I would say “Would it help you if I do such and such?”

Balancing and adapting involvement

This theme covers the grandparents’ difficulties and uncertainties about how best to offer support while at the same respecting the parents’ privacy and autonomy.

Playing the “guessing game”. The grandparents described feeling well-informed by the parents on their grandchild’s disease. However, they expressed uncertainties in how to best support the grandchild and family, and described often having to guess or feel their way, and do what they believed might be helpful. Also, the grandparents described being careful not to be an unwanted burden, in their attempts to help. Thus, they described attentively watching the parents’ responses, and adapting their support accordingly.

This with how you behave so as not to be an elephant in a greenhouse, but where there is this embrace, where they experience and feel that they can be supported by someone, and that it is okay to say “We are actually fed up, even though it’s been so long” or “It’s been a difficult day” or “Do you remember that, it was actually really fun”.

Treading cautiously. The grandparents described being conscious not to demolish the parents’ hope, by sometimes keeping their opinions to themselves, especially regarding matters like prognosis.

There are also things – times – when you didn’t say anything, and others where you did… So you looked and listened and you had your own perception of things, and you could see the condition, but you didn’t say anything. It was a sore point, a terrible point one might say. For so long that there was, like, something to do, then you could talk about it a little differently. Then there was still hope as long as there was something you could do.

During the end-of-life care period and through bereavement, the grandparents explained being very careful and cautious in giving advice or expressing their opinion to the parents, as a way of respecting the parents’ boundaries and autonomy – even if sometimes it meant compromising on what they believed might be better for their grandchild or the parents.

I really thought it through in advance, if I had to talk to them about something, how to phrase it so as not to hurt them, so that they would not perceive it as me making them aware of something they have forgotten or didn’t do well enough. I think this is a completely normal human mechanism, but when you are in this very vulnerable situation, it is so important to think about how you communicate.

Worrying silently

This theme revolves around the grandparents’ immense and distressing concerns for their family, while the grandparents’ own needs and worries were often neglected and silenced.

Managing a challenging double role. The grandparents expressed their deep worries for both their ill grandchild, its siblings, and their own child and described struggles in being both a caring grandparent and parent.

It has been hard to see both one’s children and grandchildren receive such a shock. Hard! And, as parents, one tries to support them all as best you can. And we have done that. And we’ve been there. We have been there for them as much as we were allowed to. And we were allowed to be there.

Grandparents described taking on a bigger parenting role than they had for years, in response to seeing their own child in profound need of support, which was especially pronounced following their grandchild’s death. They expressed a heartfelt wish to know and follow how the family was holding up, while respecting the parents’ boundaries and privacy.

Disregarding own needs and staying strong. The grandparents also described their own worries, including physical, social, and psychological/emotional consequences that they, themselves, experienced during and following their grandchild’s end-of-life care period and death. However, grandparents described trying to protect the parents by consciously keeping their needs and worries to themselves.

If I say what I think I might need and [son] and [daughter-in-law] have to sit and listen to it, they might break down in tears because they’d feel like they had let me down by not giving me what I needed. And that is precisely what I am pointing out, the thing about being in a role and having to be the giving one all the time.

The grandparents expressed a need to be the strong ones, and many neglected their own worries and health issues, describing them as being less important than the needs of their grandchild and the parents.

[My husband] is very caring towards me, I mean hugely. And [he] takes care and [says] “No, now you have to take care, now you have to be here”, but that’s not what I need in such a situation. Then I have to be with my daughter. And that is just the way it is.

Managing difficult emotions

This theme covers the grandparents’ gradual coping with the expected and eventual loss of their grandchild, and their need to continue to keep and cherish the memory of their deceased grandchild.

Bearing the unbearable. The grandparents were often reluctant to seek personal support from the grandchild’s parents and described different means of receiving support after the loss of their grandchild, including from other family members, psychologists, or priests.

So I chose, subsequently, to talk to a priest […], where I was just allowed to talk, meaning she simply let me talk until I was empty inside. And it was really good for me because you could just say anything. Boom and no judgmental or “No, now we’ll fix it” approach, just a listening approach. And then you could say everything out loud without having to burden some of your loved ones with it. I think that was really nice for me. Because I didn’t know where to go with it.

They described a long road of coming to terms with their grief and learning to live on with what felt unfair and meaningless.

Sharing memories and marking special days. The grandparents expressed a need to keep on talking about their deceased grandchild, marking special days, and sharing memories. They described various places, rituals, and acts as a welcome opportunity for reminiscence, and many grandparents appreciated sharing memories with the parents.

[Grandchild] will always be a part of their lives, just as it has left an indelible mark on me. It will always be a part of me, and it still fills my mind because it was such a hard process and because he was so lovely.

Calling for support and understanding

This theme concerns the grandparents’ needs for guidance, support and understanding, which were present alongside their gratitude for being involved in their grandchild’s end-of-life care and through bereavement.

Missing support for grandparents as caregivers. Most grandparents expressed a wish that someone had supported them with information, advice, or guidance on how to best support the family, and on how to maintain an appropriate role and degree of involvement. This was especially pronounced after the grandchild’s death, where they struggled to support the parents emotionally in their grief.

I could have used some tools for, well, “what do you do?”. It’s not every day you are in that situation, as you say, it’s double. I am extremely sad to have lost [grandchild], but I am also extremely sad on their [the parents’] behalf. As I say “I so often wish I could do magic, but I can’t, so what can I do instead?”

The grandparents expressed an interest in receiving, e.g., information and support from health care or psychosocial professionals, or from other grandparents, and by means of video clips, written material or in joint family meetings supporting the communication between parents and grandparents.

Searching for grandparents in the same situation. Unprompted, most grandparents expressed a wish to talk to other grandparents who had gone through a similar situation. They explained how the loss of a grandchild differed substantially from other, previous losses, and how they would have liked someone with similar experiences to see their feelings, concerns and behaviors mirrored in others.

This is something else, the grief I have, it’s… Over a grandchild. So maybe talk to another grandmother who has also lost a grandchild and has that grief with her daughter and with the family. I think that would have been very, very rewarding. You can say that you have something in common, because we all have deaths, when you are my age […], but it is not the same at all. It is normal for one’s parents to pass away, but for a child to die, that is terrible.

Living with taboos and misunderstood considerations. Most grandparents expressed a wish that friends had supported them better during their grandchild’s end-of-life care period and through bereavement, by being willing to ask questions, and to understand and acknowledge them in their worries and grief. Instead, they experienced that people around them appeared to be uncomfortable and avoided talking about their deceased grandchild.

I have many [friends] who do not ask about it. And I can’t understand that because it’s still my grandchild. It always will be. But then to ask: “How are you?”, no one actually asks that.

Discussion

In this study, we found that grandparents involved in the home-based end-of-life care of their grandchild with cancer navigated complex and often unclear or conflicting roles, while offering support to the entire family during the end-of-life care period and through bereavement. The grandparents were greatly involved, supporting emotionally, and assisting with practical tasks, while striving to offer the best possible support without disrespecting the parents’ privacy and autonomy. They had great worries for their grandchild and their own child, while they often neglected their own personal concerns and suffering. While the grandparents had several means of managing their difficult emotions, various unmet needs for support and guidance of the grandparents were evident.

Our study offers important insights to the central role that grandparents fulfill when involved in their grandchild’s end-of-life care in the home setting. In line with Flury et al. (2020), we focused on grandparents’ experiences of both their grandchild’s end-of-life care period and through bereavement, and found that they played a major role in supporting the entire family; a role that did not diminish at the death of their grandchild but continued into bereavement.

Overall, we found that grandparents continuously adapted their support in a constant balance: being supportive without becoming an unwanted burden to their adult child. The complex roles of grandparents have also been acknowledged in previous research, including the difficult double role of being both a grandparent and parent (Flury et al., 2020; Gilrane-McGarry & O’Grady, 2011; Hall, 2004b, 2004a; Tatterton & Walshe, 2019a). In line with previous research (Flury et al., 2020; Mendes-Castillo & Bousso, 2016; Moules, McCaffrey, et al., 2012), we also found the grandparents struggling to find an appropriate degree and form of involvement in their grandchild’s end-of-life care and in the parents’ subsequent bereavement, while respecting the parents’ autonomy, boundaries and privacy. Similar role difficulties and ambiguities have also been previously described in grandparents of healthy children, where grandparents are found to follow and support criteria established by the parents (Villar et al., 2012), respecting the parents’ decision and boundaries as a means to keep a healthy relationship (von Humboldt et al., 2018), and describe unclear or undefined responsibilities and expectations with regard to their role as a grandparent (Noriega et al., 2017). Because relatively few children die, the role of grandparents of critically ill and dying children may be even more vaguely defined in our culture, and, thus, may be hard to fulfill because there is a lack of role models displaying or enacting patterns of behavior for the grandparents to acquire and accommodate (Turner, 2010). Accordingly, the grandparents may experience substantial role strains (Bowman, 2013), as the role is unfamiliar, and role expectations are often unclear or unspoken.

Furthermore, we found that grandparents often suppressed their own opinions, emotions and needs. Both during a grandchild’s disease and through bereavement, research suggest that many grandparents choose to keep their own suffering to themselves and refrain from seeking support, as a means of not burdening the parents of their grandchild (Charlebois & Bouchard, 2007; Dias & Mendes-Castillo, 2021; Mendes-Castillo & Bousso, 2016; Moules, McCaffrey, et al., 2012; Moules et al., 2012). This may be seen as “emotion work”, as described by Hochschild, where an individual actively tries to manage their own feelings in accordance with “latent rules” and appropriateness (Hochschild, 1979). The suppression of one’s own needs, despite the grandparents major involvement in their ill grandchild’s end-of-life care period and in the parents’ bereavement, may, however, not be without a significant cost to the grandparents’ health and wellbeing (Kelada et al., 2019; Wakefield et al., 2014a, 2017).

Nevertheless, grandparents rarely access evidence-based psychosocial support (Wakefield et al., 2014a). Research indicates a general lack of appropriate services to support grandparents (Contro & Sourkes, 2012; Donovan et al., 2015), and grandparents may feel invisible to health care professionals (Moules et al., 2012), who seldom consider their experiences (Mendes-Castillo & Bousso, 2016). In line with previous research (Flury et al., 2020; Moules, McCaffrey, et al., 2012; Tatterton & Walshe, 2019b), we found that grandparents were mostly concerned with how they could better support their grandchild and the family, but they did also express their own needs and suffering, both during their grandchild’s end-of-life care period and through bereavement, and they called for support services targeted to grandparents.

As a response to grandparents reporting unmet information needs (Wakefield et al., 2014b), Wakefield et al. developed an information booklet for grandparents of children with cancer, which was found highly acceptable among grandparents (Wakefield et al., 2016). Likewise, written information material targeting grandparents of children in palliative care could be developed to support this specific grandparent population. Also, we found that grandparents expressed a wish to talk to other grandparents who had gone through a similar situation. In line with our findings, grandparent support groups have been proposed (Moules, McCaffrey, et al., 2012), and promising results from grandparent bereavement groups have been found (Arnone et al., 2022; Roose & Blanford, 2011; Tatterton & Lyon, 2022). By this means, grandparents could act as role models for each other (Turner, 2010), by having the opportunity to see their feelings, concerns and behaviors mirrored in other grandparents in a similar situation. Furthermore, family meetings facilitated by the child’s care team may be a means of enhancing family communication, allowing the sharing of information, articulating and aligning expectations and helping to clarify roles (Bradford et al., 2021), as has been shown in adult palliative care (Glajchen et al., 2022; Hudson et al., 2021).

Strengths and limitations

The study’s data were originally collected to fulfill a different research aim (Hammer et al., 2023), but the in-depth and rich descriptions from the grandparents warranted further exploration that was not sufficiently addressed in our primary analysis. Although there are limitations to secondary analyses of qualitative data (O’Connor, 2020; Ruggiano & Perry, 2019), rigor was ensured by the good fit between the data and the new research aim, the inclusion of only researchers familiar with the methodology and data from the original study, and by using uncoded transcripts for our secondary analysis (Ruggiano & Perry, 2019). The dependability and credibility of the study were enhanced by using qualitative content analysis with ongoing discussion of the findings among coauthors (Graneheim & Lundman, 2004). Limitations include that our findings may represent mainly the experiences of grandparents in families with stronger relations, as the grandparents were identified and invited through the parents. Furthermore, while allowing the grandparents to be interviewed in couples may have enhanced their comfort in the interview situation, there is a possibility that it may also have had consequences on the confidentiality, as the couple may be reluctant to express their opinions freely as a means to protect each other’s feelings or to create a “shared truth”. Importantly, although only one grandparent declined participation, our sample size is very limited, due to the limited population of eligible grandparents and our secondary analysis of data, which were originally generated to serve a different research aim. Consequently, our small sample size of seven grandparents of four children with central nervous system tumors, all recruited from one site, means that data saturation is unlikely and limits the transferability of our findings (Lincoln & Guba, 1985; Malterud, 2001). However, we do believe that the current study and the secondary data analysis serves a valuable means to address a sensitive research topic (Long-Sutehall et al., 2011) and “give voices” to the population of bereaved grandparents who are seldom heard in pediatric end-of-life research.

Conclusion

Grandparents are often resourceful and highly involved in home-based pediatric end-of-life care but may need support in navigating their complex and often undefined or unclear roles in the family system. Accordingly, timely, appropriate, and targeted support services are warranted to help clarify grandparental roles, aid inter-generational communication, and meet the unique needs of grandparents involved in pediatric end-of-life care.

Acknowledgments

The authors wish to express their sincere gratitude to the grandparents for participating in this study and sharing their experiences. We would also like to thank Martha Errebo Jacobi for her great contribution to the study through her work as a research assistant.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Funding

This work was supported by the Danish Cancer Society under Grant number R173-A11326-17-S51; the Health Foundation under Grant number 19-B-0045; Axel Muusfeldts Fund under Grant number 2019-0137; Dagmar Marshalls Foundation under Grant number 500020; and Tømrermester Jørgen Holm og Hustru Elisa f. Hansens Mindelegat under Grant number 21110. None of the funders have had any role in the study design, in the collection, analysis or interpretation of data, in the writing of the article, or in the decision to submit the article for publication.