1. Introduction

Globally, the demand for palliative care (PC) is growing as the prevalence of chronic noncommunicable disease increases [1, 2]. In Australia, most people now die from chronic illness [3], in circumstances where there is a need for PC [4]. The delivery of PC services varies across the country, influenced by a variety of national and state-based policies and funding models [5]. Challenges in providing effective care to everyone who may need it include late referral to specialist PC services [6] and limitations in primary care workforce capacity and capability [7]. Alongside professional health services, approximately one in eight Australian family members provides unpaid care to an older person or someone with a disability or long-term health condition [8]. A growing body of evidence demonstrates the efficacy of systemic interventions, such as family support and therapy, in facilitating adjustment to the impacts of chronic illness and improving the physical and mental wellbeing of family carers [9]. Following bereavement, research suggests that family-focused grief therapy is likely to be effective for the most at-risk groups [10]. Although carers’ practical and emotional needs are largely recognised by government and PC providers, research continues to highlight considerable gaps in lived experiences of support, particularly in relation to the timely provision of information, effective communication with professionals and the coordination of services [11, 12]. Within the context of family relationships, little is known about the challenges faced by adult children providing and navigating care to their parents.

Research exploring the experiences of offspring caring for an ailing parent frequently focuses on the division of responsibilities. These studies highlight gender as a key influence on the provision of care, with daughters providing more care than sons, and offering support that tends to be more flexible and responsive to their parents’ needs [13]. Daughters frequently take on the role of coordinating care, including planning for future needs, whilst sons tend to pass on caregiving responsibilities to their sisters [13, 14]. When care is unequally distributed, siblings may highlight differences related to gender, proximity to the parent or personality to explain inequities [15]. Regardless of the gender composition of sibling groups, there is evidence that, at times of increased stress or crisis, having siblings may reduce the stress and burdens experienced by the child who is the primary caregiver [16].

Sibling relationships may be challenged or strengthened by the ways in which caring for parents is navigated [17]. In their study of (in)gratitude between siblings, Amaro and Miller [18] found that the equitable distribution of tasks related to the provision of care was of lesser concern than consistency and reliability—that siblings did what they had said they would do. Further, collaborative decision-making about the distribution of responsibilities was key to promoting expressions of gratitude. When one sibling is seen to dominate decision-making, this leads to tension and disputes [19]. Higher levels of caregiver burden because of family stressors are correlated with poorer relationships between siblings [20]. Overall, research indicates a need for greater understanding of the contextual factors, such as roles and practices of care, that influence diverse experiences of dying and bereavement [21]. Nuanced explorations of the ways in which family members negotiate caring and loss may shine a light on the relational complexities of supporting someone approaching the end of life.

In theorising childhood sibling relationships, Edwards and colleagues [22] conceptualise ‘sibling practices’ as a way of thinking about how ‘sibling relationships are actively built in everyday interactions involving verbal and non-verbal communication as part of lived experience’ (p. 20). They argue that such practices (re)construct masculinity and femininity, birth order and age status hierarchies, and are key to emotional security in that they safeguard against feelings of isolation and disconnection by sustaining a sense of having someone who is ‘always there’. Beyond the ‘doing’ of family, Evans [23] highlights the importance of ‘displaying’ family to others, including as a means by which to maintain connection to a deceased parent and their legacy.

Following the death of a parent, sibling dynamics continue to change and evolve. In their study of bereaved siblings’ relationships, Greif and Woolley [24] identify various relational patterns. For some siblings, a parent’s death brought them closer together following positive experiences of collaborating to provide care or to execute an estate; recognition of a need for each other as the only surviving family; and a successful transition to taking on new familial roles and responsibilities. However, for others, this coming together was temporary and followed by a drifting apart. Other siblings highlighted divisions and distance created by disagreements about estates, or events related to caring or the circumstances of a death. For some, these challenges pushed already-strained relationships further apart or reaffirmed pre-existing distance in relationships (see also [25]). Other studies have found that sibling contact increases after the death of a first parent [26, 27] and then decreases after the death of a second parent [27]. This pattern may be explained by a temporary coming together of siblings to support a surviving parent [27]. However, other research suggests that caring for a widowed parent may have a negative effect on relationships [21], including more frequent sibling conflict [26] and a reduction in the support provided to one’s sibling [28].

Overall, adult siblings appear to have closer relationships when they have living parents [27, 29]. Conflict between siblings may decline after parental death, pointing to a fading rather than a deterioration of relationships [27]. The absence of a parental kin-keeper who brings family members together, creating obligations for connectedness and smoothing over differences and disagreements, may explain these changes in patterns of conflict and closeness in bereavement [25, 27, 30].

McCarthy and colleagues [31] use the term, ‘the continuing aftermath of death in the lives of the living, over space and time’ (p. 4) to draw attention to the importance of the relational in making sense of experiences of loss, including the potential for bereavement to be a significant source of ‘family trouble’. The psychotherapeutic literature similarly reflects upon the relational reverberations, or ‘emotional shock waves’, that flow through family relationships, sometimes creating anxieties and conflicts following loss [32]. Studies exploring the relational impacts of parental death express similar sentiments, conceptualising the death of a parent as ‘a pivotal life event that leads midlife adults to rethink and reorganize existing family relationships’ ([33], p. 628). The literature discussed above suggests that, at least for some, relational challenges (or family troubles) may precede bereavement, raising questions about the ways in which negotiating responsibilities around the provision of care for a parent with a life-limiting illness shapes a family’s coping, adaptation and connectedness following loss.

In this paper, we draw upon the retrospective reflections of bereaved adult siblings whose parent(s) died whilst receiving PC or residential aged care (RAC) services in Sydney, Australia. In the inductive and abductive analysis to follow, we adopt a constructivist grounded theory approach [34, 35] to illuminate the ways in which diverse experiences of family at end-of-life flow through to, and shape, experiences in/of bereavement. In doing so, we aim to extend understandings of the ways adult sibling relationships may be challenged by the impacts of parental illness and death, providing essential insights to enhance the provision of psychosocial and therapeutic supports to families receiving PC.

2. Methods

This paper is based on the analysis of a subset of data collected as part of a larger study exploring the experiences of bereaved adults whose family member died whilst receiving PC or RAC services provided by a nongovernment organisation (NGO) located in metropolitan Sydney, Australia. RAC homes, providing care to older adults with complex health, dementia or palliative needs, were situated in 5 districts of Greater Sydney. PC units, offering specialist in-patient support, and community PC services providing out-patient support, were in two of those areas. A list of 1104 potential participants, recorded as the ‘primary contact’ or ‘next of kin’ for their deceased family member, was provided by PC and RAC staff. A letter outlining the study, and including instructions to opt out of further contact, was sent to a randomised selection of participants three to 18 months after a death. Two to 4 weeks after the letter was mailed, the first author contacted participants by phone to provide additional information, answer any questions and ascertain consent to participate. Purposive sampling was used to recruit participants who identified as male and participants whose family member had died at a younger age, as these experiences and demographics were initially underrepresented within the sample. In stage one of data collection, semistructured, in-depth interviews were conducted by the lead author in a location of the participants’ choosing. Interviews allowed for an in-depth exploration of participants’ experiences of caring and bereavement, positioning the participant as expert [34]. Interviews privileged participants’ perspectives, primarily consisting of open questions and concluding with an invitation for participants to share anything they had not been asked about but felt was important. The interviewer engaged in a process of reflexive analysis to cultivate an awareness around how his assumptions may have shaped interactions with participants. This included regularly debriefing with coauthors, memo writing after each interview and completing a positionality statement. Thirty interviews took place in participants’ homes, three within community PC services offices and three in public spaces—a café, a restaurant and a university library meeting room. Interviews ranged between 43 and 190 minutes in length and were digitally audio-recorded and transcribed verbatim.

In the second stage of the study, participants were asked to provide written or video-recorded responses to questions emailed to them monthly for 6 months. This solicited diary methodology created opportunities to explore participants’ everyday experiences over time and encouraged participants to reflect on those experiences in their own words in a context that was less formal and constrained than an interview [36]. This additional method of eliciting participants’ accounts provided an opportunity to further enhance the richness and groundedness of data [37]. Almost all participants chose to write their responses, with one video-recording two of her six responses and another audiorecording all 6 of her responses. Eight participants responded to 6 sets of diary prompts, 1 to 4 sets and another provided just 1 set of responses. Video and audio responses were transcribed and analysed alongside the written data.

The risk of participation causing emotional distress was foregrounded when obtaining consent for each stage of data collection. When conducting interviews, the lead author employed a method of ‘processual consent’, frequently allowing opportunities for the participant to stop or pause the interview and flagging difficult questions so that they could be avoided if wished [38]. A list of support services was provided to all participants, and participants were reminded of the supports available to them whenever the lead author, an experienced social worker and counsellor, assessed that this may be helpful. Ethics approval for this study was granted by the hospital and university ethics committees (HREC/18/SVH/19). This study was not preregistered.

2.1. Analysis

Data analysis was guided by Charmaz’s [35] constructivist grounded theory because of its strengths as a rigorous methodology that supports the generation of theory whilst acknowledging and exploring the ways knowledge is constructed within social interactions (see also [39]). From the beginning of the research process, the lead author reviewed interview transcripts and audio recordings and engaged in discussions with the other authors to identify recurring patterns. Reflexive attention was paid to the ways analysis was informed and influenced by the research team’s perspectives, for example, the lead and second authors’ practice as bereavement counsellors. Early in analysis the accounts of bereaved offspring with siblings, particularly reflections on sibling relational worlds, appeared as a potentially distinct aspect of care and bereavement experiences. Consistent with theoretical sampling, tentative ideas emerging from analysis of initial interview and solicited diary data were explored and examined through analysis of other participants’ accounts [35]. This process continued as data collection progressed, with a particular focus on identifying deviant or contrasting cases to challenge emerging insights [40].

Line-by-line coding of relevant sections of transcripts attended to actions, meanings, assumptions and processes within the data. Following this, a process of focused coding was used to develop themes and concepts that, in turn, contributed to theory formation [34]. Constant comparison of data throughout the analysis allowed for the refinement of conceptual understandings that were confirmed and connected through reviews of the original transcripts, linking different perspectives and experiences from interviews and diaries. Throughout this inductive approach, we sought to ensure the complexity and nuance of participant accounts was preserved. During data collection and analysis, we continually engaged with and returned to the relevant literature, including sociological and psychotherapeutic work on kinship and familial relationships. Sensitising concepts, such as theorising on sibling practices and displaying family, provided an array of background ideas that we drew upon to inform and enrich the development and conceptualisation of theory [40, 41]. NVIVO 12 software supported the organisation and analysis of data.

2.2. Participants

Seventeen bereaved offspring with siblings consented to be interviewed and, of these, 10 also completed solicited diaries. This sample is not intended to be representative of all bereaved offspring with siblings. The richness, diversity and variations within their accounts do support a critical analysis that advances theorising about experiences of caring, loss and family relationships prior to and following the death of a parent (see [37] on data adequacy). Participants included 11 daughters (of the deceased) and six sons, aged between 30 and 72. At interview, participants had been bereaved between eight and 18 months, with a median period of 15 months. The age of the deceased ranged from 58 to 94. Several deceased family members had multiple diagnoses, including dementia, cancer, Parkinson’s disease, stroke and heart failure. Twelve participants were recruited following the death of a second parent. Of the five who were bereaved following the death of a first parent, two reported being estranged from their other biological parent. The duration of a parent’s ill health varied from months to many years. It is difficult to define the period during which a parent was receiving PC as stories contained examples of care that included a palliative approach provided by a range of professionals, including oncologists and RAC workers, who were not part of a specialist PC service.

Eight participants had one sibling, four had two siblings, four had three siblings, and one had six. As has been noted elsewhere, there may be complexities around who is defined as a sibling [22]. One participant said that two of her sisters were half-siblings. Other participants’ use of the words ‘brother’ or ‘sister’ may also refer to half-siblings, stepsiblings and other relationships. Nine participants had siblings who lived outside of Sydney, including in other states and overseas. Participants, and their siblings, provided various forms of care, including personal care, practical supports and companionship. This care fluctuated over time and between siblings alongside the undulations of a parent’s illness. As descriptions of care were subjective and offered by only one sibling within each family, it is not a focus of this paper to make any assessment of differences in care provision based on demographics such as gender or birth order. Most participants were born in Australia to parents with a Northern European background. One was born in Chile, one in China, one said she was half Māori, and another identified as part Sri Lankan. Overall, this cohort was urban and middle class, relatively well educated and affluent, and appeared to have good access to medical and other services.

3. Results

In interviews and diary entries, participants reflected upon the ways in which they negotiated the care of parents with their siblings and how these relationships evolved through the ups and downs of illness, end of life and into bereavement. Through the three interrelated themes below, we explore the diversity of relational impacts of caring and loss, including collaboration and sharing of responsibilities, conflict and difference, and changes to family relationships in bereavement. Participant excerpts are identified by pseudonyms, whether data were collected in interviews or solicited diary responses, and whether a parent was connected to PC or RAC services.

3.1. Caring, Collaboration and Sharing Responsibilities

Many participants shared examples that emphasised collaboration between siblings in how they shared the responsibilities of caring for a parent:

I’d moved back to live with my mum and looked after her and then when I needed a break my other brother took over, then my other brother would come down and give us all a break. (Karen, PC, interview)

Here, and in other accounts, there was a sense of everyone pitching in, with each sibling playing their part. Importantly, siblings did not need to complete the same tasks for the division of care to feel equitable:

My sister is a nutritionist so she’s used to the medical system and so she handled any of those sorts of doctor type things and the need for a bit of external advice. My brother’s at the accounting end of the financial side. So, I handled all the other things. (Frank, PC, interview)

Often, each sibling was characterised as drawing upon their strengths and skills to offer different forms of care. Perceptions of effort and the feasibility of caring in particular ways emerged as a way to assess if the contributions made by others were fair. For example, living in another state or overseas was narrated as a rationale for differing contributions to care:

Most of the time that mum was in [RAC] he [brother] was in Tasmania. Most of the decisions that’d have to be made, I’d make them, or if they were decisions that I considered that needed the two of us, we’d discuss it. (Derek, RAC, interview)

Participants often endeavoured to consult with siblings about significant decisions in which the other may offer a helpful perspective or may wish to be involved. Different personalities or coping abilities were sometimes drawn upon as a rationale for taking on different roles. For example, describing events following her mother’s death, Liz said:

My brother broke down, was a complete mess. So, me being who I am just kind of sucked it up, did it, organised a memorial service. (Liz, PC, interview)

In this, and in some other accounts, there was a sense of acceptance of, or perhaps resignation about, occupying a particular role within a family system. Responsibilities sometimes defaulted to, or were thrust upon, a particular family member, who had to ‘suck it up’. Participants often expressed a sense that this was a role they were familiar with and comfortable with (at least to some extent), having been placed in that position through much of their life. The additional responsibilities that accompanied such roles often extended into bereavement:

I said to my brothers, because you don’t want to think, because you’re the oldest you’re just taking over that’s not my intention. I said ‘do you blokes want to do the eulogy? Do you want to say something about her?’, ‘Nup you do it.’ (laughs) ‘Oh thanks.’ […] I got their input as to things they’d want to mention and stuff, so that was okay. They were happy to provide info. They just didn’t want to stand up and do the talk for some reason. (Peter, RAC, interview)

Here, Peter expresses an awareness of how his position as the eldest could confer power or status that resulted in perceptions of monopolising decision-making. He describes efforts to mitigate this risk, ensuring his brothers were able to voice their opinions and needs. He also employs humour, perhaps to buffer or ameliorate any adverse emotional response towards his brothers’ refusal to share responsibilities that could be viewed as burdensome. This, and the excerpts above, offer insights into the perspectives, meanings and practices that facilitated the development and maintenance of collaborative and connected sibling relationships. Although there are clearly inequities, these are navigated in ways that prevent or avoid the development of resentments and relational ruptures, experiences we will discuss further below.

Some participants reflected on the possibility that they may have prevented their sibling from making greater contributions to care:

There were times where he would come and do stuff and that, but I think maybe it was unfair, maybe I didn’t let him do more stuff or maybe he was just happy to let me do it and then if there was a gap that he could fill in. (Sarah, RAC, interview)

This, and other accounts, point to the challenges of intuiting feelings and attempting to ensure involvement in care is fair. In addition, perceptions about what feels appropriate in the moment may shift when making retrospective evaluations, with the impacts of one’s actions becoming more visible, or more questioned, in hindsight.

Gender and sibling position sometimes influenced expectations around roles, although this was not always straightforward:

My brother – he’s the [Power of] Attorney so he’s going to have to deal with it [the estate]. With [younger brother], we keep joking about it, the attorney hasn’t done anything about the superannuation or anything like that. […] In a way he feels like he has to do everything because he’s the oldest male, but half the time he’s like ‘how do I do this?’. He’ll ask his secretary, me, to do everything for him. I’m like ‘alright you need to do this’ or ‘here’s the letter, sign it and send it off’ […]. I know he’s trying to do things in his way, but he is too slow to do some stuff. (Louise, PC, interview)

Accounts highlight the complexities inherent in navigating who takes on particular duties, including how gender and birth order shaped expectations about roles. At times, responsibilities were resisted, deferred or thrust upon others. In addition, assessments of how effectively or efficiently a sibling was attending to tasks sometimes led to frustrations. In some circumstances, stepping in to take responsibility was constructed as an act of care or concern, taking over from a sibling who was struggling to make difficult decisions such as placing parents in RAC:

Even towards the end I was still only face to face seeing them on weekends, whereas he was every day. He was far more emotionally attached to the decision, was far more emotional for him. I was still trying, as much as I could, to look at it in terms of ‘we’ve got to do this for her sake’. In the end, speaking to [brother]’s wife as well in the last couple of months, we had to do it for his sake as well because he just couldn’t accept it had to be done. (John, RAC, interview)

Similarly, Karen, who had been providing most of her father’s care, described how her brothers assumed responsibility for ceasing treatment:

My brothers made the decision. They said ‘[participant name] I think it’s time to take him off all his medication and just let the condition take its path’ and that’s what we did. (Karen, PC, interview)

These and other excerpts foreground positive assessments of the role siblings took in supporting each other when caring became challenging or overwhelming, and where stress was likely heightened because of the progression of illness. Responsibilities are reported as shared, and siblings cooperate to ensure care of parents and care of each other. Sibling relationships are constructed as positive and collaborative, potentially reducing the challenges of supporting a parent who is dying and navigating the aftermath of that loss. However, other accounts pointed to the ways in which negotiating sibling relationships added to the burdens of care.

3.2. Conflict, Difference and Unfairness

Many accounts foregrounded differences and difficulties between siblings and their approaches to caring. For example, some participants expressed resentment about the unequal distribution of care:

My sister refused – she never gave me one night off in 5 years. She never gave me as much as 12 hours off with my mother in 5 years, and I had to give up a few things. (Carol, PC, interview)

Disparities in the taking on of responsibilities for caring are highlighted. Alongside, reflections on the value and pride Carol took in caring for her mother were the hurt and anger at having siblings who she perceived as not playing their part. Important here was the sense of inequitable sacrifice—feeling as if only one sibling had to ‘give up’ aspects of their life, whilst others continued living as normal. Some accounts drew attention to how a sibling’s needs or personalities added to these burdens of responsibility:

I felt responsible for notifying her [sister] before he [father] was going to die, and I didn’t know when that was going to be. […] she doesn’t like coming to Sydney and I knew that. […] So, I felt under a lot of pressure to pick the right time so she would be there for him and for her. (Emily, PC, interview)

Intuiting the timing of dying to ensure the family is gathered, achieving ideals of what may be conceived of as ‘good dying’ [42, 43], contributed to the challenges of care (see also [44]). Rather than feeling supported by a sibling (or accepting differences in roles and responsibilities as discussed above), navigating one’s relationship with a brother or sister, including attending to their needs, created additional pressures and concerns. This was particularly evident when siblings held different opinions about parents’ wishes or preferences for care:

We had to go and look [for RAC]. […] The facility at [RAC] was newer and offered a better level of care. My sister was like ‘oh but she wants to be up on the coast, and she wants to be here’ and I’m like ‘okay seriously is the one up at the coast going to offer her the best level of care? Forget everything else. We’re looking at the care’. (Scott, RAC, interview)

Or, held divergent perspectives about how to care well:

We’d got to a point where it’s like so unsafe because she’s got one leg, and cords everywhere, and we’d physically be like ‘No mum, lie down’, and [older sister] would be like ‘No, she wants to get up, she wants to go for a walk, take her for a walk’, and we’re like ‘we can’t take her for a walk!’. It’s not safe. (Madelyn, PC, interview)

Pivotal decisions about matters such as place of care, as well as everyday decisions such as how to balance risk, safety and independence, emerged as a potential source of conflict between siblings. Often these differences of opinion appeared highly emotive, bound up with moral choices about how to be a ‘good’ son or daughter when faced with a parent’s deteriorating health. Accounts that included multiple examples of moments where opinions, priorities or needs differed pointed to the ways in which disagreements amassed through the undulations of a parent’s illness, exacting a cumulative toll on sibling relationships. As illness progressed and care needs increased, emotional and practical pressures often became more intense, resulting in growing tensions. These appeared particularly heightened as the end of life approached:

My brother though had this different mindset. He was actually still trying to shovel food into her 3 days before she died. I organised to have lunch with him, and I said, ‘you’ve got to let mum go, you’ve just got to let her go’. So, my sister and I made the decision that if she got pneumonia again – we were both Power of Attorney, the boys weren’t. We made a decision that we would not give her antibiotics. […] but we knew that my brother would be outraged, and he couldn’t accept it. (Anne, RAC, interview)

In addition to holding differences of opinion about care, holding a legal status, such as Power of Attorney or Enduring Guardian, conferred responsibilities for decision-making to some siblings and not others, affecting how relationships were negotiated. This unequal division of power often created resentments, including when it was wielded in opposition to the wishes of other siblings. Differing perspectives on whether providing or withholding treatments was prolonging life or prolonging suffering were common across accounts:

My brother was just losing it going ‘can’t they just give her some more morphine and put an end to this’, and they didn’t. […] After she passed, he got a bit sort of conspiracy theory, ‘I reckon when they moved her, they gave her a bit of extra something and didn’t say anything, and it sort of sped’. I’m like ‘can we leave that for the moment, she’s gone’. (Hannah, PC, interview)

Again, implicit within these accounts are differing opinions around what is ‘right’ or ‘good’ in respect to decision-making about a parent’s care. Further, the appropriateness of expressing particular viewpoints in the immediate aftermath of a parent’s death is questioned. Similarly, Madelyn’s description of a conversation between her and her sisters in the moments after their mother’s death highlights concerns about the permissibility of a sibling’s emotional expression:

[Sister] said, ‘Oh, I just feel like so relieved’ and we were like, ‘too soon’. […] like literally it had just happened. I think that if say we caught up a month later, and we were all talking about how we felt, she could have said, ‘I felt relieved after it happened’. […] It was not too soon for her to feel that, too soon for us to hear it. […] It was because of the environment it was in. We were literally in the hospital. Mum was still there. (Madelyn, PC, interview)

In addition to the feeling itself, Madelyn foregrounds elements of timing and place that shape the acceptability of articulating certain sentiments. It may be understandable to experience private feelings of relief, but questions are raised about choosing to say those words out loud to others, particularly when a relative’s body is still physically present. A focus is placed upon the ethics of care, in particular, the appropriateness of public displays of emotion that may call into question one’s prioritisation of a parent over and above one’s own needs and responses. Madelyn points to the ways in which different perspectives on appropriate expressions of grief, bound up with notions of what it means to care well, may create tensions or discord within familial relationships.

Differing perspectives on how to care well often continued to affect relationships as families attended to practical tasks in bereavement:

She [sister] did come up another time to help me start to clear out the apartment, but I could barely stand it because she, dad was a very snappy dresser [. .] And she was coming along and grabbing things out of the wardrobe and putting them in kitchen tidy bags and I just had to call a halt and say ‘sorry I can’t do it this way, I have to do it in a way that will honour dad and if that’s too hard for you, you just go and leave it to me and I’ll do it, but I’m doing it in my own time.’ (Emily, PC, interview)

Accounts point to the ways in which making efforts to thoughtfully decide what to do with a deceased parent’s belongings, or other meaningful objects such as cremains, was bound up with a sense of continuing to perform care. Sometimes, this appeared to reflect aspects of a relationship one sibling shared with a parent that may have differed from other siblings’ relationships with that parent, and as a way to display the importance of a continuing parent–child connection (see also [23]). Where siblings had differences of opinion or attitude to such matters, this appeared to exacerbate and perpetuate tensions that existed, or had grown, prior to a death and persisted in bereavement.

3.3. Reconfiguring Family Relationships, Togetherness and Distance

Participants’ retrospective reflections highlighted considerable diversity in how sibling relationships and dynamics developed and adapted following loss. Some reported that caring and bereavement had not changed their relationship with siblings in any meaningful way. For others, there was a sense of feeling more connected to their brothers or sisters:

I guess the whole thing arguably brought us together more. (John, RAC, interview)

The challenges of caring and decision-making were characterised as something that bound siblings together. The efforts required to find common ground or share responsibilities had a positive impact on experiences of relationships, resulting in connections that felt ‘closer’. For some, the death of a parent resulted in efforts to maintain sibling connectedness:

I make sure that I ring my brother a few times a week and invite him over too now and again and we go there, but not that often though, but when we can. (Natasha, PC, interview)

Dynamics within the family system often appeared altered by the absence of a parent, requiring siblings to take on new or different roles like initiating opportunities to gather together. For others, like Madelyn, new roles included providing support or guidance that had previously been offered by a parent:

I think me and my older sister, do feel a sense of responsibility for the younger two and making sure that we’re just more present and there to help them make decisions and things like that. We didn’t have to do that before. (Madelyn, PC, interview)

Such changes may be thought of as ‘sibling practices’ [22] that (re)construct relationships within everyday interactions, preventing or mitigating feelings of being alone. In the absence of a parent who took on a particular role as kin-keeper [25, 27, 30], other members of the family altered their behaviours, reconfiguring their everyday practices and behaviours to sustain relational togetherness. However, such changes or adaptations did not always occur:

I’ve realised my brother and I don’t really talk anymore, especially not about Mum. We didn’t really have in depth chats before, but he seems to be avoiding me in some respects, and I wonder if it’s because I remind him of her. He’s almost all I have now in close family that lives nearish, not having a partner or kids or anything. And I feel like he doesn’t want me around either. (Sarah, RAC, diary)

Accounts revealed the sense of isolation that may follow parental death. In addition to the loss of a parent, a sibling’s behaviour sometimes added to what was experienced as painful in bereavement. This sense of disconnection was not only attributable to a lack of contact but also to difficulties attending to needs, such as reminiscing about a parent. For some, relationships that were characterised as close also included experiences of distance:

I think that bereavement must be a very lonely & isolated journey. Although in many ways diametric opposites, my sister and I are very close. We would often talk about our experience of losing our mother, but it became clear how different the same incident was to both of us. (Tim, PC, diary)

These and other excerpts articulate a desire to join with a sibling, implying that there may be comfort in connecting in one’s grief with another who, at least to some extent, experiences this loss similarly. The importance of opportunities to share emotional pain, as well as the adjustment to new family roles mentioned above, resonates with Stroebe and Schut’s [45] revised dual process model of coping with bereavement which describes the loss-oriented and restoration-oriented relational tasks families must navigate as they process the stressful aspects of their loss and adapt to a changed world. However, as Sarah describes, attending to these tasks may be complicated if another family member does not collaborate or experience a similar need. In addition, as Tim expresses, one’s ability to connect with a sibling does not necessarily result in communication that enhances closeness.

For some, feelings of aloneness that followed bereavement were compounded by the additional sense of loss that accompanied disappointments, differences and distances located within sibling relationships. Several participants described a permanent rupture of their relationships with brothers and sisters:

There’s been a bad rift between us, it can never be the same again. Whereas if mum had just died with a heart attack it wouldn’t be this bad blood. I’m sure on my sister’s part she doesn’t think there’s much bad blood because she’s an idiot. But on me it’s unforgiveable. (Carol, PC, interview)

Estrangements from siblings were often narrated as a direct consequence of the circumstances that surrounded a death. Prolonged periods of illness led to an accumulation of examples of inequities in the provision of care and feelings of having been let down or unsupported by siblings, as expressed in Carol’s earlier excerpt. This sense of unfairness extended to matters of inheritance:

Whilst many families fight over family estates, I never thought this would happen to us, as we were always so open about everything. I experienced a dream in the last week where I was shouting at my sister ‘You should have been here helping me with all this’. This dream clearly depicts to me the reality of the overall unfairness of the situation during Dad’s last few years. As I lived the closest, I basically looked after him and organised all his affairs, bills, mail and carers. Time, energy and patience were spent by me whilst incurring loss of income. None of this was taken into consideration when settling his affairs, although it was spoken about often beforehand. This situation I find myself in is common enough, but nonetheless upsetting, frustrating and unfathomable. No Christmas cards, no birthday card or present and no conversations. I feel I have lost my extended family, as well as my father. (Emily, PC, diary)

The toll of caring, including the physical, emotional and financial impacts of attending to a parent’s needs, often over a prolonged period, was emphasised in this and other accounts. Feelings of hurt surrounded perceptions that siblings had failed to recognise, express gratitude for or compensate for the efforts and sacrifices associated with care. This was often expressed as a sort of double bereavement—the death of a parent and the loss of sibling relationships. For some, these ruptured relationships sat in stark contrast to the collaborative efforts made during a parent’s illness:

Even while mum was alive my sister and I are legally bound by both being Power of Attorney. We are legally bound by both being Executors, having to sign stuff. But once that’s over there is no real reason other than a desire to be together, like there is no legal commitment. So, I’d imagine that if families weren’t naturally desiring to be together is that they would just lose contact. Probably. I have had more contact with my sister over the last few years for better and worse. I think she’s sick of me. I’m a bossy boots. I’m the one that’s been organising everything and sending out the emails and that makes me a bit of a pain in the neck […]. I think once both parents are gone you have to want to be together. (Anne, RAC, interview)

Within this cohort, when siblings had become estranged, this followed the death of a second parent. Legal duties and performances of care that ‘bound’ siblings together as a last surviving parent’s illness progressed were frequently drawn upon as an explanation for the building of frustrations and difficulties that resulted in the breakdown of relationships. The cessation of obligations or responsibilities to care collaboratively now enabled choices to be made about whether and how to continue a relationship with one’s sibling(s).

4. Discussion

This study aimed to explore experiences of sibling relationships when caring for a parent who was dying and in bereavement. Accounts revealed a diversity of experiences that included collaboratively negotiating care needs in ways that reinforced or strengthened relationships, and examples of tensions and conflict that, for some, led to distance and estrangements. The frequency with which siblings reported relational challenges highlights the potential for interventions to improve family functioning both prior to and following the death of a parent.

Accounts that included positive evaluations of shared performances of care add weight to theorising on social exchange [29], highlighting how perceptions of fairness may be more important to sustaining collaborative relationships than ensuring equal division of labour. Our analysis draws attention to the ways in which everyday interactions or ‘sibling practices’ [22] (re)construct sibling relationships to cultivate closeness and cooperation, or contribute to resentments and relational ruptures. In addition, these findings make visible the continual (re)construction of roles within the family system based, for example, upon gender and birth order, and the taking on, or resisting of, responsibilities. Attending to the ways in which sibling practices shape everyday relationships provides an important avenue by which clinicians may address challenges in relationships. For example, when completing a biopsychosocial assessment or providing counselling, using other-oriented and circular questioning invites an exploration of sibling(s)’ perspectives on fairness, and the challenges, strengths, expectations and constraints associated with one’s position within a family (see also [46]). Cultivating such understandings may foster empathy and reflection that strengthen relationships and facilitate communication about taken-for-granted roles. Research exploring the impacts of caring and interventions to support family members providing care tends to focus on the needs and experiences of an individual carer or a carer and care recipient dyad (see, for example, [47]). Our analysis emphasises the ways in which the wider network of family relationships shapes experiences of care, underscoring the importance of attending to relationships between all family members when considering how best to support individual carers, as well as the family group.

Our analysis points to the ways in which having siblings who take ownership of ‘difficult’ decisions, such as placing a parent in RAC or ceasing treatment, may mitigate the challenges of determining what constitutes ‘good’ care. However, participants’ narratives also drew attention to the relational risks of nominating particular family members as Power of Attorney or Enduring Guardian, imbuing them with the power to override others’ preferences and perspectives. Identifying ways to mitigate such risks may enhance supportive collaboration between siblings providing care. This may include appointing someone other than an immediate family member to decision-making roles, a strategy that has been found to improve the quality of sibling relationships [19]. In addition, supporting and encouraging a parent to communicate their end-of-life wishes to all their offspring may mitigate potential future family conflict when opinions about ‘good’ care differ. In circumstances where there are pre-existing tensions between siblings, a family counselling session that includes parents and their offspring may be beneficial in facilitating discussions to enable opposing perspectives and rationales to be heard and understood.

In seeking to explore the ‘aftermath of death’, including notions of ‘family troubles’ [46], our analysis draws attention to the ways relational experiences in anticipation of dying flow through to, and shape, relationships in bereavement. These findings deepen our understandings of relational patterns documented in other research, including that siblings often come together to provide care after the death of a first parent, then drift apart after the death of the second [27]. Further, the accounts above highlight how a context of anticipated dying may contribute to the deterioration and dissolution of relationships (see also [21]). Negotiating decisions about what constitutes good care whilst navigating often-unequal distributions of caring responsibilities frequently challenged sibling relationships. Within the psychotherapeutic literature, Bowen’s family systems theory conceptualises the ‘emotional shock wave’, the reverberations of loss that ripple through family relationships following a death, and alters the ways family members interact and relate to each other [32]. The excerpts above provide examples of such waves, illustrating how siblings’ resentments and conflicts about care led to changes and tensions within relationships, creating fertile ground for family troubles. In drawing attention to the ways pre-death experiences shape relationships in bereavement, our findings highlight the potential for pre- and post-death family and systemic interventions [9, 10] to prevent or mitigate relationship challenges and estrangements following a loss. Further research is required to identify the types of early family-focused interventions that are most effective in addressing the relational challenges of caring for a parent with a life-limiting illness.

Importantly, structural barriers may impede support being provided to families both prior to and following a death. In the Australian context, models of activity-based funding favour appointment-based interventions provided to individual patients registered with a particular health service [48]. Such funding arrangements may restrict capacity to respond to the complex and diverse support requirements of family members not registered or recognised as ‘patients’, and to offer interventions such as family therapy (see also [49, 50]). In addition, the results above have implications for how multidisciplinary services are structured, demonstrating the need for models of intervention that can simultaneously recognise and attend to multiple, complex and interwoven practical, financial and relational challenges (see also [51]). Removing structural barriers to the development of flexible approaches to service provision is essential to ensuring effective PC is available to everyone who may need it.

For many siblings in this study, having a parent with a progressive illness facilitated or necessitated everyday practices of caring that sustained, or promoted, togetherness. A living parent, regardless of their capabilities, continued as a family kin-keeper or lynchpin who fostered connections and mediated conflicts and tensions [25, 27, 30]. For some, this togetherness was ruptured by distance and disputes within relationships that often arose, intensified or were only possible to express following a parent’s death. Kim and colleagues [33] argue that parental bereavement may lead to a reconsideration and restructuring of the family system. Within the context of sibling relationships, our findings draw attention to the various forms such relational reorganisations may take, including efforts to enhance closeness and connections, and decisions to reduce contact. These relational evolutions highlight the linking of lives, how interdependencies through pivotal events such as illness and death contribute to feelings of family and togetherness or isolation and aloneness (see also [28]). Ruptures to sibling relationships may be particularly impactful because of their status as the most enduring relationship within a life course, including their potential to foster a sense of having someone who is ‘always there’ [22]. The importance of clinical practices that consider and recognise the individual within the context of their family and relational network is, again, emphasised. The impacts of loss on any given individual are impossible to fully comprehend, and address, without also attending to the ways that bereavement has reconfigured relationships with others in their life (see also [52]).

Despite an expressed awareness that sibling conflict often occurs following parental death, participants narrated a profound sense of loss, and sometimes shame, that this had occurred within their family. Experiences of conflict and tension before and after a parent’s death may be viewed as contrary to normative ideals that the doing and displaying of family include coming together to enable good dying in ways that cement sibling relationships into the future. These dissonances contribute to a sense that such stories may be considered ‘untellable’ [53], in that they do not accord with idealised tropes of loving families gathered by the bedside [54], fostering a togetherness that provides comfort and strengthens family ties following loss. Those providing a palliative approach to care, with its focus on attending to family and carer wellbeing, are well positioned to provide space for stories to become ‘tellable’, supporting the expression of emotions and experiences that cannot be voiced elsewhere. Such nonjudgemental acceptance and validation may counteract shame, enabling family members to confront painful and stigmatised feelings in ways that allow them to better understand their emotional responses and experiences, and to identify self-enhancing activities and perspectives [55]. The profound impacts of the sense of being doubly bereaved when sibling estrangement had followed a parent’s death, point to the important role members of the multidisciplinary team may play in de-stigmatising a loss that was often narrated as taboo. As has been discussed elsewhere (e.g. [24]), this may include educating families to normalise a range of relational experiences at the end of life.

Although the findings above offer themes and insights that may apply in other contexts, this study is limited in capturing the retrospective accounts of a single sibling within each family. Our participants were listed as the ‘primary contact’ for their family member and, as such, may have narrated perspectives that differed from those of their brothers and sisters. This exploration of sibling experiences could be extended by research that recruits multiple members of the same family both before and after a death. Participants were recruited from the records of a single service provider, located in one city. Almost two-thirds of participants identified as female, and the overall cohort was relatively demographically similar in terms of cultural background and socioeconomic status. Research that demonstrates considerable racial and cultural differences in sibling conflict when caring for a parent (see, e.g., [25]) emphasises the importance of endeavouring to recruit a diverse cohort of participants to explore a range of influences on experiences of end of life and bereavement. Future research in multicultural or cross-national settings may help ensure such diversity and further the evaluation of interventions across different populations.

5. Conclusions

A central goal for PC is improving quality of life for family members of patients with a life-threatening illness. With a few notable exceptions, such as family-focused grief therapy [10, 56], many of the technologies of assessment and intervention in current health and bereavement care practices focus on the identification of individualised risks and needs. Attending solely to individual experiences may result in impoverished understandings of a family’s relational needs, neglecting the ways in which risks and challenges are influenced by social experiences, leading to forms of intervention that miss opportunities to make meaningful change. Developing policies and practices that attend to relational considerations within all aspects of health and PC may be essential to ensuring effective service provision. Deepening understandings of the diversity of challenges families may experience when caring for someone with a life-threatening illness, and in bereavement, is key to developing interventions that effectively support individuals and families as they navigate the relational complexities of care and loss.