Adult Sibling-Related Experiences While Caring for a Parent Diagnosed With a Blood Cancer

Abstract

Introduction:

An older parent’s blood cancer diagnosis impacts the entire family system, including adult siblings, an oftenoverlooked subsystem of the family. Yet, adult siblings are typically involved in their parents’ care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development.

Method:

Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semi-structured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method.

Results:

Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping).

Discussion:

Findings illustrate how a parent’s blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis.

Introduction

Although cancer is an individual person’s diagnosis, it can affect the broader family system (Wozniak & Izycki, 2014). Theoretical models that incorporate a family systems (Galvin & Young, 2010; Kerr, 1981; Yi, 2009), ecological systems (Bronfenbrenner, 1979, 1986), medical family therapy (McDaniel et al., 2014), and developmental systems lens (Walsh, 2016) collectively suggest that health transitions like cancer must be understood from more than an individual approach. The diagnosis and treatment are major life course transitions that are typically unexpected, and family members can be critical sources of support for patients and each other as they adjust (Given et al., 2001). As such, cancer affects the broader family system’s functioning physically (Cohen & Pollack, 2005; Kurtz et al., 2004), emotionally (Cohen & Pollack, 2005; Kurtz et al., 2004), and financially (Lauzier et al., 2005).

Blood cancer diagnosis of leukemia, lymphoma, or myeloma represented nearly 10% of cancer diagnoses in the United States in 2020 (Howlader et al., 2021). A family system is uniquely impacted by a blood cancer diagnosis, as treatment is often immediate and can include multiple sequential treatments, with extended hospital stays and lengthy therapies (Pailler et al., 2016). The family system must collectively adjust and can experience abrupt changes in roles, intimacy, and communication (Harden, 2005; Porter et al., 2005; Rolland, 1999, 2018).

For most types of blood cancer (e.g., nonHodgkin lymphoma, leukemia, and myeloma), the median age of diagnosis is later adulthood (i.e., mid to late 60s) (Howlader et al., 2021). Often adult children become the primary caregiver of diagnosed parents, a role that is uncompensated, takes significant time and energy that can span for years, and involves physical, emotional, social, and financial tasks (Kent et al., 2016). While cancer affects the entire family and how members function and relate as a system (Bengtson et al., 2005; Elder et al., 2003; Pecchioni et al., 2005), this may be further complicated for midlife adult child caregivers juggling multiple households, familial responsibilities, and careers (Fingerman et al., 2004; Fisher et al., 2021; Tolkacheva et al., 2010). Midlife adults are “sandwiched” between generations and often tasked with “juggling” multiple roles at once (i.e., for younger loved ones as parents of children and for older loved ones like caring for parents) (Fingerman et al., 2004). Although less explored, understanding adult child caregivers’ experiences from a family systems lens is warranted (Kizza & Muliira, 2020; Mitrani et al., 2005; Sutter et al., 2014). The experience of one subsystem—sibling bonds—may be especially complex given this relationship is associated with both tension and support across the life span (Cicirelli & Nussbaum, 1989; Halliwell et al., 2017; Suitor, & Pillemer, 1996; Tolkacheva et al., 2014).

Sibling (Dis)Connection Across the Life Span

Siblings can have one of the longest and emotionally connected relationships given their shared heritage and family experiences (Cicirelli & Nussbaum, 1989; Connidis, 1994; Gilligan et al., 2020; Rossi & Rossi, 1990). Nonetheless, the sibling subsystem is less focused on in family health research, with existing scholarship typically prioritizing two phases of siblings’ life span: childhood and later life (White, 2001). This is in part due to a decline in proximity and contact among siblings from early adulthood through midlife, and then a reuniting in old age as important sources of support (Jensen et al., 2020; White, 2001). Although the sibling subsystem does become more autonomous (or less interdependent) from the family system over time as members age (Cicirelli & Nussbaum, 1989), a major health transition (like an older parent’s cancer diagnosis), can be a reason for middle-aged siblings to connect.

Although caregiving typically falls on one family member, if siblings engaged in joint care, it could reduce burden (Adams, 2006; Seaman, 2015). Given siblings’ unique egalitarian relational connection across the life span, siblings may also communicate about care more cooperatively, which may contribute to less burden, conflict, and more equity (Amaro, 2017; Ingersoll-Dayton et al., 2003a,’ 2003b; Seaman, 2015). Broader studies show when parents need care, adult children may become a source of support for each other and share this role (Bedford, 2005; Matthews, 2002; Tolkacheva et al., 2014; Tonti, 1988). Yet, adult child caregivers of parents also report tension with siblings related to caregiving demands (Halliwell et al., 2017; Matthews, 2002; Suitor et al., 2013) and higher levels of burden when there are disagreements about caregiving tasks (Tolkacheva et al., 2011).

Research specific to blood cancer caregiving is scarce and does not address the experience of adult siblings after a parent has been diagnosed in later life (Dionne-Odom et al., 2019). The aim of this study was to explore sibling-related experiences among adult child caregivers who are caring for a parent diagnosed with a blood cancer to better understand the impact of a blood cancer on the sibling subsystem of the family.

Method

Sampling and Participants

We conducted a secondary analysis of data from a larger interview study in which the primary aim was to capture blood cancer caregivers’ experiences in midlife, with a focus on adult children caring for a diagnosed parent and parents caring for a diagnosed child. Upon IRB approval, 39 adult child or parent caregivers were recruited using The Leukemia & Lymphoma Society’s (LLS) constituent database and an online group of patients and caregivers (LLS Community) within the U.S. and Canada. During primary analyses, we inductively identified that adult child caregivers identified the sibling subsystem as a part of their care experiences, which motivated this secondary analysis (Ruggiano & Perry, 2019; Thorne, 1999).

For the secondary analysis, inclusion criteria were: 1) self-identified as an adult child caregiver for a living parent (biological, adopted or in-law) with one of three types of blood cancer (acute myeloid leukemia [AML], acute lymphoblastic leukemia [ALL], or lymphoma); 2) had a parent who finished primary or maintenance treatment in the previous 118 months; and 3) had at least one sibling. Fifteen participants qualified. Thirteen confirmed or described their primary caregiver role during the interview, and 2 stated they shared the primary caregiver role with a sibling. Caregivers were predominantly White or Caucasian (87%), daughters (80%), and aged 29–64 years old (M = 44). Parents’ age at diagnosis was between 56 and 90 (M =71).

Procedure

The second author conducted all in-depth, semi-structured, audio-recorded phone interviews from July–September 2018. Participants were asked about their caregiving experiences from diagnosis up to the present day to cover all facets of caregiving including health care, family interaction, and disease coping across the disease trajectory (for example, What were those first few weeks like after the diagnosis both for your parent and for you or anybody else who was helping to take care of her/ him at the time? Can you tell me about your role as the caregiver for your parent? How have other family members or others played a caregiving role?). Interviews lasted about 45 minutes. Transcriptions for 15 caregiver interviews resulted in 193 single-spaced pages of data. Participants were compensated with a $50 Amazon gift card.

Analysis

Thematic analysis was conducted using a constant comparative method (CCM) approach with data managed using ATLAS.ti (Glaser & Strauss, 1967; Strauss & Corbin, 1998). The analysis was led by the first author and overseen by the senior author, a qualitative methodology expert. Three CCM analytical steps were used: (a) immersing oneself in the data by reading all transcripts focusing on the secondary analysis aim; (b) assigning codes (labels) to patterns (called open coding); (c) collapsing codes into categories to identify themes; and (d) conducting axial coding (i.e., analyzing text for each theme) to ascertain properties to define themes. To ensure thematic saturation, Owen’s (1984) criteria was used (e.g., repetition, recurrence, and forcefulness). To ensure rigor, the first and senior authors met regularly to validate analyses and develop a codebook. Three independent coders then used the codebook to analyze different subsets of all transcripts and held meetings to compare analyses, and validate the typology (Morse et al., 2002). Data excerpts include contextual information (caregiver’s relational role, age, relationship with sibling).

Results

Adult child caregivers described three types of sibling-related experiences while caring for a parent diagnosed with a blood cancer that centered on (a) caregiving responsibilities, (b)expectations about the caregiving role, and(c)coping together and apart. Participants’ authentic accounts and thematic properties (italicized) further illustrate each sibling-related issue.

Caregiving Responsibilities

Participants shared challenges related to managing their caregiving tasks that centered around the involvement (or lack thereof) of their siblings. They described this in three ways. First, caregivers sometimes explained how they shared the caregiving load with siblings. They expressed how critical their siblings’ involvement was in helping them manage care tasks. Although these were primary caregivers, they shared how their siblings were helpful in taking on specific roles.

I have two kids and then my sister is here with her husband and her son. Because I was fully full-time employed at the time of the transplant and so my sister came out here from [different state] to help with the caregiving. But I’m no longer working, so me and her, we kind of just share duties and taking her to her doctor’s appointments and stuff like that. (Daughter caregiver, age 37, with a sister)

Second, it was more common that caregivers described not sharing the caregiving load with siblings, with some offering reasons. For instance, they noted a lack of involvement if siblings were geographically distanced or had competing responsibilities such as a family of their own, jobs, or school.

[My sister’s] done what she can. ...She lives about 45 minutes away. But I mean, she’s a teacher, so she was able to help out that summer and be able to take the time then. ... But after that, she had to go back to work, so she wasn’t able to contribute as much, and I know that she felt pretty guilty about that too. (Daughter caregiver, age 29, with a sister)

At times, caregivers indicated siblings were less (or not) involved because they perceived themselves as more suitable for the role.

I’ve always been kind of the more outgoing, outspoken of the three of us, and so I think that they [siblings] were happy I took that [primary caregiving] role because they’re great people, and they’re really helpful, but I don’t know that they always know how to help. So I think it took some of the pressure off of them to figure out what to do because I was telling them what to do. I think they really appreciated that because then there was no gray area. It was very black and white. “You do this at this time. This is what needs to happen.” So from what I understand from things they’ve said, they appreciated knowing what they needed to do or how they could help in a very specific way. (Daughter caregiver, age 33, with a sister and a brother)

Third, caregivers encountered challenging feelings toward (or from) siblings about caregiving. This included feelings of frustration and, at times, resentment toward siblings about having to shoulder the bulk (or all) of the caregiving load.

I feel a little bit frustrated and maybe bitter towards [my sister] that hey! “You could have pitched in some more. You could’ve helped out even remotely, even if you couldn’t be here physically, there are things you could’ve done to help share the burden a little bit with me and you didn’t.” And that hurts. That definitely hurts. (Daughter caregiver, age 32, with a sister)

However, some caregivers also described their siblings’ resentment toward them in relation to not having equally shared responsibilities across the disease trajectory.

My sister and I are not particularly close. I’ve been out here 30 years, and I get back to [hometown] a couple times a year for holidays. When this [cancer] first got started, there was a lot of resentment on my sister’s part, that—this is before I started going back for two weeks at a time and the like, but that she was being left sort of holding the bag. (Son caregiver, age 59, with a sister)

Expectations About the Caregiving Role

At times caregivers emphasized role expectations related to being the primary caregiver. They addressed three interconnected elements of societal expectations about caregiving as they described or made sense of why they were the primary caregiver as opposed to their sibling(s). First, adult child caregivers discussed gendered expectations about their role. Caregivers and some of their siblings associated the caregiving role with being a woman or a daughter in the family system.

I think maybe daughters tend to do more in a lot of families. ... I go to a caregivers’ support group, and I hear this a lot. [My brother] pretty much comes about once every other week, spends 20 minutes and out the door he goes. (Daughter caregiver, age 64, with a brother)

Second, participants referenced family status expectations when discussing their role as primary caregiver versus other siblings. This included marital status, with those divorced or single siblings expected to take on more responsibilities. It also included child status, as those siblings with children had less expectations given their parental obligations. This societal notion at times overlapped with gendered roles.

It does present some resentments to me. ... I’m the only daughter. ... My one brother will occasionally send me $100 or something, be like, “Go get yourself a manicure. Go do something for yourself.” The other one doesn’t even—you know, they just—it’s my duty, like it’s 1950, and that’s what you’re supposed to do. ... And especially because I’m divorced. It’s like, “Well, of course. You don’t have a husband. You only have one child.” ...One [brother] has three [kids], one has two. Like, “Yeah, why wouldn’t you go?” (Daughter caregiver, age 50, with two brothers)

Third, caregivers mentioned sibling birth order expectations in reference to caregiving. Being the oldest child in the family was associated with an assumption of being the primary caregiver within the family system.

[Caregiving has] mainly been my sister and my dad and me just because my brother lives a little bit further out. He helps when he can but he’s not right here. I’m the oldest child in the family. So I’ve always been more, you know, how the oldest child is kind of the organizer. (Daughter caregiver, age 49, with a brother and a sister)

However, birth order and the primary caregiving role did not always coincide, which they remarked went against expectations though upheld others societal norms (e.g., gendered roles):

I think I am more sensitive now to the fact that I have to take the lead. I have an older sister, so I always kind of felt like birth-order-wise that was kind of her job. So, I always kind of felt like, “Why am I doing this?” (Daughter caregiver, age 33, with a brother and a sister)

Coping Together and Apart

Caregivers also shared sibling-related experiences that capture their coping and adjustment to their parent’s disease. They described how disease coping intersected with sibling relationships in three ways, two of which reflect communal coping (or coping together) and one illustrated how siblings may cope apart.

First, caregivers described how siblings received information together. Parent(s) relayed information about the diagnosis or their treatment to the caregiver and their siblings when they were all together (or at the same time). As a result, siblings had the opportunity to communally cope with the diagnosis (or other information), as this caregiver shared:

She [mother] called my brother and sister and me and asked that we come over with our spouses but not our kids so she could tell us. She didn’t want to be the one to tell the grandchildren. That was too hard for her. ...What was really hard for us is my dad’s dad died from leukemia. ... He was diagnosed suddenly, went into the hospital, and he was there for a month, and he died. So immediately that’s what we all think right? So it was really hard. It was scary. We didn’t know what to expect because the only experience we had was our grandfather (Daughter caregiver, age 49, with a brother and a sister).

Second, caregivers shared how they believed the diagnosis and caregiving contributed to enhanced relationships. They described feeling closer to siblings and also shared how relational intimacy increased in the larger family system. This caregiver explained this:

I’m seeing more of my mother than I’ve seen in years. I would go back for visits, but it’s when you drop in for two or three days, everyone’s—everything’s sunshine. So there’s more of an opportunity for me to give back a little bit to her for all she’s done. I think that people that know me and know my sister are seeing a little side of us that they might not otherwise see. You become cognizant of things that you otherwise might not be cognizant of. (Son caregiver, age 59, with a sister)

Lastly, caregivers described divergent coping experiences with siblings, particularly when siblings coped apart and one sibling engaged in maladaptive coping. This included engaging in risky behavior like substance abuse as well as becoming more withdrawn or isolated, as this caregiver shared:

The one brother, when [our mother] got really sick and we thought she was going to go, he started drinking heavily or he can’t deal with it. He really can’t deal with it. He’ll go and hibernate somewhere. (Daughter caregiver, age 29, with two brothers and a sister)

Discussion

The adult child caregivers in this study described how the sibling subsystem is impacted when a parent has been diagnosed with a blood cancer. Findings highlight how a parent’s cancer diagnosis can enhance the sibling bond and family system. Findings also illustrate challenges among siblings, including difficulties with sharing caregiving tasks, managing role expectations related to gender and age, and the use of maladaptive coping approaches. Collectively, these findings provide insight into sibling-related issues that are important for caregivers, families, and health care professionals to consider after a parent’s blood cancer diagnosis.

For instance, caregivers described how the family system and its functioning were impacted, which in part required siblings to take on caregiving roles to help their parent. In some situations, siblings shared this role, with one sibling (e.g., the primary caregiver) taking the lead in delegating responsibilities to other siblings. When the caregiving load was not equally shared, caregivers sometimes addressed reasons, seemingly excusing (or defending) their sibling, by explaining why it was not possible (e.g., geographic distance or other competing responsibilities with work or family). Unequal division of caregiving among siblings is not uncommon, and research also indicates that siblings rationalize or explain this in ways similar to the caregivers in our study (Leinonen, 2010). Competing roles/responsibilities (e.g., having children or being married) are noted barriers to being able to fulfill the caregiving role, with proximity being an indicator of who typically becomes the family caregiver (Bucx et al., 2012; Dautzenberg et al., 2000; Leinonen, 2010; Pillemer & Suitor, 2014). Moreover, which sibling assumes the primary caregiving role is also associated with traits or skills (Willyard et al., 2008), which was also evident in our findings. It is possible that these reasons may be expected and even accepted within the sibling subsystem or larger family system.

Still, at times, caregivers revealed tension within the sibling subsystem related to caregiving. While there may be understanding among siblings about availability due to competing roles/responsibilities, societal norms may inform these expectations and tensions. For instance, caregivers referenced such expectations when discussing their role and lack of sibling involvement. This included gendered expectations. Gender imbalances are not uncommon in family caregiving across health contexts, with a greater tendency for women to be the primary caregiver (Pinquart & Sörensen, 2007; Willyard et al., 2008). Although most caregiving research demonstrating that women tend to fulfill this role is based on cohort studies, a recent longitudinal, within-in families study showed that daughters are more than twice as likely as sons to become caregivers of aging parents (Pillemer & Suitor, 2014). This was also reflected by the gender ratio in our study (80% women and 20% men).

When siblings do not share caregiving duties, siblings that are providing caregiving may experience burden or feel unsupported, and previous relational tensions may worsen (Tatangelo et al., 2018). Although it may not always be possible for siblings to share blood cancer caregiving responsibilities, caregiving together or communally can foster healthy outcomes. For example, our findings demonstrated that adult child blood cancer caregivers who had siblings as secondary helpers or who coped communally with their siblings also described enhanced closeness. Such relational intimacy among siblings may also foster a supportive caregiving sibling network, which is essential to alleviating adult child caregivers’ burden (Tolkacheva et al., 2011). Family ecological systems theories (e.g., Bronfenbrenner, 1979, 1986) recognize the importance of considering subsystems (like the sibling dyad) within the larger context of how families cope with health changes, given families are comprised of interdependent and dynamic subsystems and structures. When subsystems (e.g., siblings) can adjust their roles, it promotes better family functioning.

However, siblings may need assistance navigating conversations about caregiving roles and how to share responsibilities, which can be done even with geographic distance (Baldassar et al., 2007; Degeneffe & Burcham, 2008).Doingsocanbe both health-promoting for primary caregivers and their distant siblings, who may feel excluded themselves (NAC/MMI, 2004). Our findings can be integrated into interventions that target adult child blood cancer caregivers’ communication skills for navigating challenging conversations, such as talking about collaborative care with a sibling (Bylund et al., 2022). Due to caregivers’ different experiences, targeting subgroups of caregivers’ needs (e.g., adult children) in interventions is optimal (Fennell, 2007). These findings may also motivate clinicians (e.g., oncology social workers, medical family therapists) to encourage caregivers to share care duties with siblings.

Limitations

Most participants were women and white. Future research should both capture men’s experiences and represent ethnically and racially diverse caregivers, given that both gender and culture inform familial expectations and caregiving experiences. Only one sibling within the family was interviewed. Future research should aim for a family systems approach by capturing other siblings’ perspectives. Additionally, these findings can inform a larger, quantitatively designed study to identify differences in caregivers’ experiences based on blood cancer type, for instance comparing chronic and acute types of blood cancers.