Parental cancer caregiving in emerging and young adulthood: the impact of sibling dynamics on the caregiving experience

Abstract

While emerging and young adults are increasingly becoming caregivers to a parent diagnosed with cancer, little is known about how sibling relationships are impacted across the caregiving trajectory. To explore this, bereaved emerging and young adult caregivers (EYACs; aged 18–35) whose parent died of cancer within 1 year of diagnosis completed semi-structured interviews. Transcripts were thematically analyzed and EYACs described impacts on sibling bonds in three areas: openness, caregiving involvement, and relational connectedness during bereavement. Pathways were formed, lasting throughout the caregiving trajectory—open communication and collaboration during caregiving led to strengthened relational connection in bereavement, and tense communication and perceived abandonment worsened relational connectedness. While sibling caregiving conflicts can occur at any age, EYACs lack conflict-management skills to preserve sibling relationships and, without targeted support, may face long-term relational consequences and emotional distress. Future research should develop skills-building interventions to help EYAC siblings navigate caregiving conflict.

Keywords

bereavement cancer caregiving communication coping emerging and young adults siblings

Introduction

Sibling relationships are one of life’s most important connections. As one of the longest and most emotionally connected relationships due to siblings’ shared heritage and family experiences, high quality sibling relationships can serve as a protective mechanism throughout the lifespan (Jensen et al., 2020). Cross-culturally, sibling relationships are central during childhood and adolescence, and remain one of the most important relationships throughout adulthood and into old age (McHale et al., 2013; Wu et al., 2018). In fact, sibling relational quality is one of the strongest predictors of mental wellbeing in both young adulthood and old age (Sumbas, 2022; Waldinger et al., 2007). However, sibling bonds are complex and can often be a source of distress in addition to support (Halliwell et al., 2017). This dialectic tension often becomes apparent when family collaboration is needed, including when a parent ages or develops an illness that requires siblings to share care responsibilities. This typically occurs later in life, when siblings are more likely to have the communication and coping competencies to navigate caregiving challenges. Little is known, however, about the impact of parental caregiving when it occurs earlier in the lifespan than is normative, such as during emerging and young adulthood (ages 18–35).

Cancer caregiving is well-understood to pose significant burden physically, emotionally, socially, and financially, and these burdens are further intensified in the context of an advanced cancer diagnosis (Abazari et al., 2023). Caregivers often experience anxiety, disrupted relationships, and heightened risk for chronic fatigue and cardiovascular disease, likely as a result of chronic stress (Abazari et al., 2023; Ahn et al., 2022; Lambrias et al., 2023; Potier et al., 2018). When caregiving is shared among family members (e.g. siblings caring for a parent) experiences can vary; importantly, it is the quality of sibling relationships and the extent of their collaboration in providing care that can either buffer or exacerbate caregiving-related distress (Amaro, 2017; Bagautdinova et al., 2023; Halliwell et al., 2017; Tolkacheva et al., 2011). When caring for a parent, adult siblings who share caregiving tasks and communicate about caregiving experience less burden and conflict, while those who do not collaborate report more disagreements, greater tension, and increased caregiving burden (Amaro, 2017; Seaman, 2015; Tolkacheva et al., 2011). Thus, the extent to which sibling relationships can serve in a protective role may depend upon siblings’ ability to cooperate and support each other through caregiving hardships and in bereavement. The death of a parent can be compared to the likes of “scissors or glue,” as it can either bring siblings together or drive them apart (Gross, 2018). Siblings’ resulting relationships in bereavement are often dependent on their conflict and/or collaboration during their parents’ end of life. Parents are often kin keepers who keep family members united, and the links between siblings can be cut when a parent dies; alternatively, shared grief can foster empathy and communication, with siblings restructuring family roles and assuming kin keeping responsibilities (Khodyakov and Carr, 2009). The ways in which siblings can or cannot collaboratively care for their parent, especially at the end of life, are crucial in impacting their relationships once their parent is no longer living.

While managing caregiving responsibilities can be challenging for siblings at any age, it can be particularly difficult during emerging and young adulthood. Emerging and young adult caregivers (EYACs) between the ages of 18–35 comprise 24% of the more than 53 million Americans who provide care to a loved one with a chronic or life-limiting illness, and nearly half of cancer EYACs care for a parent or parent-in-law (Litzelman, 2019; National Alliance for Caregiving, 2020). Caregiving during this developmental stage is a non-normative life-course experience (Arnett, 2000; Kent, 2020). This “age of possibilities” is a time for identity exploration and newfound freedom—experiences that are abruptly stanched by caregiving. EYACs are not expecting nor prepared for this role, and their ability to communicate about difficult topics and manage conflict is still developing (James-Kangal and Whitton, 2019). As a result, EYACs report greater stress, depression, financial strain, and unmet needs than older adult cancer caregivers and are at greater risk for posttraumatic stress (Grenard et al., 2020; King McLaughlin et al., 2019; Walczak et al., 2018). Caregiving at this young age can also have developmental implications that linger long after caregiving has ended, as many EYACs must halt or delay pursuing higher education, romantic relationships, family planning, and career advancement to meet the demands of caregiving (Goldblatt et al., 2019; Pope et al., 2018). The absence of proper tools and caregiving support coupled with disruptions in identity exploration creates a risk that EYACs’ lives may be permanently impacted by their caregiving responsibilities.

EYACs tend to provide care as part of a “caregiving team” and rely on their “team members” (e.g. siblings, relatives, and friends) for caregiving support (Warner et al., 2023). However, at this developmental stage, sibling relationships may be precarious as they begin to establish independent lives from one another and experience life transitions such as going to college, developing romantic relationships, and living apart from family (Gungordu and Hernandez-Reif, 2022; Jensen et al., 2018). As such, sibling companionship declines during emerging and young adulthood, especially in Western cultures (McHale et al., 2013). Little research has investigated how a parent’s cancer may further impact these malleable relational dynamics among young adult siblings. Importantly, individuals who report poor sibling relationship quality in emerging and young adulthood are more likely to develop major depression, suggesting that EYACs may be vulnerable to both caregiving- and sibling-related psychological distress (Waldinger et al., 2007). This heightens the importance of collaboration during cancer caregiving to both ease caregiver burden and preserve sibling relationships, buffering psychological harm.

Previous research has examined sibling-related experiences broadly among adult children who care for a parent with cancer (Bagautdinova et al., 2023), but to our knowledge, no study has yet explored the unique sibling-related experiences among EYACs, despite their vulnerability to both caregiving-related distress and long-term implications on their sibling relationships. While EYACs of parents with all cancer types are vulnerable to caregiving-related stress, we sought to focus specifically on caregivers of parents with advanced cancer, where the speed of disease progression heightens the risks of distress, the impact of caregiving burden, and the need for sibling collaboration (Greene et al., 2017; Shilling et al., 2017). In an effort to develop resources for EYACs and their siblings, the purpose of this study was to explore the impact of caring for, and losing, a parent with advanced cancer on sibling relationships among emerging and young adults throughout the cancer trajectory and into bereavement.

Method

Participants

This is a secondary analysis of data collected for a larger, mixed-method study examining EYACs’ experiences caring for a parent with advanced cancer (Kastrinos et al., 2023, 2024a; Mroz et al., 2025). Participants were aged 18–35 and ≤5 years bereaved after caring for a parent with cancer whose disease trajectory (diagnosis to death) was within 12 months. These criteria were chosen to recruit EYACs who cared for a parent who died of advanced cancer, without limiting to specific cancer type or stage. Participants were recruited online from November 2020 to January 2021 via Reddit and ResearchMatch, a U.S. national health registry with a large population of volunteers who agreed to be contacted by researchers about health studies. Study advertisements included a link to a REDCap screening survey with the option to submit contact information for an interview. As an additional recruitment method, participants were asked to share study information with their siblings (only one sibling was recruited this way, and the final sample contains one sibling pair). These procedures were approved by the Institutional Review Board at a large Southeastern university (IRB202001910).

Procedures

We conducted in-depth, semi-structured interviews with EYACs using the Retrospective Interviewing Technique (RIT), a widely used lifespan interviewing approach that captures change over time through the identification of critical turning points (Baxter and Bullis, 1986; Fitzgerald and Surra, 1981). This approach was used to capture sibling-related experiences across their parent’s disease trajectory and into bereavement, facilitating the identification of how sibling factors evolved as their parent’s cancer progressed from diagnosis to end-of-life and into bereavement (Kastrinos et al., 2024b). Participants identified critical turning points during their parent’s cancer and death, creating a timeline of their caregiving and bereavement experiences. Participants guided the interviewer through the timeline of their parent’s cancer and death and were continually asked questions regarding their communication and caregiving cooperation with their siblings at different points in their timeline (e.g. “What were your conversations with your sibling like during this time?” and “Have you felt like your sibling relationship has changed after your parent’s passing?”). Interviews were conducted via Zoom and lasted, on average, 81 minutes (range 40–113 minutes). Interviews were conducted by AK, who has expertise in young adult cancer caregiving and qualitative data collection and analysis using the RIT. Participants received $35 as compensation.

Analysis

The interviews were audio recorded and transcribed using a professional transcription service, totaling 817 single-spaced pages of transcript data. Transcripts were analyzed in ATLAS.ti. The transcripts of the one sibling pair in the sample were analyzed individually, rather than dyadically. Two authors (RG and AK) conducted a thematic analysis of the interview transcripts using a constant comparative approach and following these analytical steps (Glaser and Strauss, 1967; Strauss and Corbin, 1998): (1) identify concepts in the text and assign them labels (i.e. codes); (2) apply the criteria for thematic saturation (repetition, reoccurrence, and forcefulness) to collapse these codes into emergent categories (i.e. themes; Owen, 1984); (3) axial code the data within each theme to identify its thematic properties, creating a rich description; and (4) analyze the relationships between themes. Meetings were held throughout the process of analysis to refine the themes and develop a codebook. Two additional authors (KB and LG) used this codebook to analyze a subset of transcripts, validating that the themes were salient and consistent. Following verification and reliability standards outlined by Meadows and Morse (2001), we employed these strategies throughout the process of data collection and analysis to ensure rigor and trustworthiness (Morse et al., 2002).

Results

Thirty-one caregivers were included in this sample (Table 1). Participants were predominately white, female, college-educated and ranged in age from 19 to 34 with a mean age of 27 years old at the time of their parent’s diagnosis. Participants had a range of one to 6 siblings with most having one sibling.

Table 1.

Participant characteristics.

Demographics	Overall (N = 31)
Caregiver age at diagnosis, M (SD)	26.5 (4.15)
Number of siblings, M (SD)	2.39 (2.28)
Caregiver gender
Female	20 (64.5%)
Male	10 (32.3%)
Non-binary	1 (3.2%)
Parent gender
Female	11 (35.5%)
Male	20 (64.5%)
Time since diagnosis
1 year or less	13 (41.9%)
2–3 years	6 (19.4%)
4–5 years	12 (38.7%)
Race
Black or African American	1 (3.2%)
Hispanic/Latino	4 (12.9%)
Multiracial	3 (9.7%)
White	23 (74.2%)
Education level
12 years or completed high school	4 (12.9%)
Some college	4 (12.9%)
College graduate	12 (38.7%)
Postgraduate	11 (35.5%)

EYACs described several sibling dynamics that played a role in their caregiving experiences across the cancer trajectory: (1) openness, (2) caregiving involvement, and (3) relational connectedness during bereavement. Findings are illustrated using EYACs’ narratives in which they describe their experiences, with thematic properties identified (in italics) to further define how these sibling dynamics affect EYACs’ caregiving experience. For contextual richness, EYACs’ age at the time of their parent’s diagnosis and sibling relationship are included.

Openness

EYACs shared how a sibling communication pattern (the degree of open communication) impacted their ability to cope and care for their parent together. They described how openness (or lack thereof) between siblings affected two care-related experiences. First, openness impacted how EYACs and their siblings navigated care decisions. How openly they communicated informed their ability to cope with challenging decisions together. For instance, when siblings communicated openly and honestly by sharing information about their parent’s prognosis with each other, EYACs described feeling less alone and experiencing more collaborative decision making. Open communication between siblings also promoted EYACs feeling more confident that they were making the “right” care decisions that were in alignment with their parent’s wishes:

[My siblings and I] were all in agreement before anything was said. I would never have done anything without their consent. And we all really talked about it, and we all knew what my mom wanted, so it wasn’t like I was on my own. (Sister, 23)

In contrast, when EYACs did not openly share information about their parent’s care needs, siblings encountered tension or conflict during decision making. They described struggling with prognosis uncertainty and siblings’ divergent perceptions about their parent’s disease progression and related care needs. This divergence among siblings made it difficult to come to agreement on medical decisions. EYACs at times recalled siblings purposely excluding each other from the decision making process, the caregiving team, or even from their parent’s bedside. An EYAC whose brother was living out of state and unaware of the severity of their father’s condition illustrated this experience:

He called me, and he said, “You need to leave [the hospital]. You don’t need to be in there trying to tell them what treatment he needs and trying to put diapers on him.”… I said, “You don’t understand. … It’s not like he just is in outpatient surgery or something. … You’re not here watching him struggle, watching him die.”(Sister, 29)

After this argument, her brother banned her from visiting their father in the hospital, only relenting once he was able to visit in person himself and see she was telling the truth about their father’s status. A lack of openness among EYACs and siblings contributed to painful relational dynamics during decision making, which some EYACs described as being more upsetting than caregiving itself: “[Disagreeing with my sister] was the hardest part. Dealing with my mom? That was manageable. But then having the added stress of my sister was—it was awful. I mean, I probably cried every day”(Sister, 23).

Second, the degree of openness between siblings also impacted their ability to communally cope together. For example, open communication across their parent’s cancer trajectory paved the way for joint decision making among siblings and, in turn, their communal coping. Openness helped facilitate a more collaborative or shared experience, which EYACs linked to more connectedness and bidirectional support: “My sister and I got really close. We were the ones most directly involved with coordinating everything for my parents. So, we were very much lockstep and very open about how we were feeling and processing”(Sister, 28). Communal coping among siblings was also characterized by more frequent communication, which provided opportunities for siblings to support each other both emotionally and tangibly:

[We] would talk every day – me, my sister, and brother-in-law. We would text each other while my sister was at work. We would have dinner together. I would cleanup my sister’s house … and do some laundry for her during the day, and it [helped me] basically just interacting with them. (Sister, 28)

In contrast, a lack of openness hindered siblings’ ability to emotionally support each other, which EYACs associated with more emotional distance among siblings that ultimately functioned as a barrier to communal coping: “I felt like we were not very supportive of one another. [Brother] didn’t really recognize everything that I was doing, and I didn’t recognize how emotionally difficult it was for him”(Sister, 23). Some EYACs shared that this dynamic worsened the emotional impacts of their parent’s cancer:

The only time I’ve had a screaming argument with a sibling was during [caregiving] with my brother. Because I’m like, “How do you not see that this is not about you? This is about our dad who’s literally dying in front of us.” And he just constantly made everything about himself. (Sister, 28)

Caregiving involvement

EYACs also shared how siblings’ caregiving roles/responsibilities in their parent’s care impacted their caregiving experience. First, EYACs described functioning as a team caring for their parent. When siblings shared caregiving responsibilities equitably, they also tended to have a more collaborative care approach. This collaborative dynamic not only lessened EYACs’ individual caregiving burden and associated stress; it also helped them to feel less alone in their caregiving role. For example, some siblings divided caregiving responsibilities according to each sibling’s individual strengths, allowing them to buffer their feelings of burnout:

[My brother] was quite good about talking to my mom about treatment and talking about timeline and logistical things, … [while I was] good spending time with her and doing things to help her. … It was really nice because there’s certain things that I just couldn’t really [do]. (Sister, 26)

However, equal distribution of care was not the only way siblings functioned as a team, which often was not possible due to employment, geographic proximity, or competing roles (e.g. being parents themselves). When siblings were not able to share responsibilities equally, a mutual understanding of roles/responsibilities was important. Interestingly, open communication seemed to be an intersecting dynamic in navigating the division of care tasks in a way that buffered them from tension or conflict and promoted their understanding of their roles and responsibilities on the caregiving team. Moreover, EYACs who voiced an understanding that their siblings were contributing where and when they could were comforted in knowing that by taking on more caregiving tasks, they protected their siblings from caregiving hardship:

I just went into big sister lawyer mode. Like, “Okay. This is what needs to get done. These are the appointments we have to go to.”… [I didn’t like] doing it, but I don’t ever have any resentment for doing it. I’m glad that I was in charge. … I think it would have been a lot harder for [brother] to kind of carry all of [that] weight. (Sister, 33)

Second, EYACs described how caregiving involvement, or lack thereof, could leave them functioning as the sole caregiver, receiving little to no support or assistance from their siblings. At times, EYACs in this position had siblings who were unhelpful and did not participate in caregiving and/or siblings who may have been coping by withdrawing from the family and refusing to be there for their siblings or visit their diagnosed parent during their illness. Additionally, EYACs’ parents could encourage this dynamic by directing EYACs not to share caregiving responsibilities with specific, typically younger, siblings in attempts to protect them from distress. Though EYACs respected their parents’ wishes, these directives could reopen painful family system or parent-child dynamics from childhood, where parents prioritized EYACs’ siblings’ feelings over their own:

Somehow my brother was too young [to be involved] even though there’s only two years of difference between us. … The end of [my mom’s] life really brought out a lot of patterns that have been present throughout our entire lives. … I was always treated as the person who’s going to handle things and the responsible one, the mature one. And that wasn’t true when I was 23, and it was much less true when I was 15. (Sister, 23)

In extreme cases, the absence of sibling support during this difficult time left EYACs feeling abandoned and emotionally betrayed. Not only did they have to shoulder the burdens of caregiving alone, but the resulting conflict exacerbated their caregiving-related distress and robbed them of the opportunity to communally cope with their sibling. Another EYAC described a similar dynamic but instead perpetrated by their sibling and not their parent, where her brother, who refused to visit their father or help with caregiving, prioritized his own feelings over her needs. She shared his comments during a confrontation:

[My brother said], “The main reason why I didn’t come here was I was feeling really bad seeing my dad [is] sick.” And I was like, “Yeah, I mean, I wasn’t feeling great. … I wasn’t really coping well seeing my dad dying, and I was here. Why didn’t you do the same?”(Sister, 32)

Relational connectedness during bereavement

EYACs shared how their collective experience with their siblings (including their communication patterns and caregiving involvement) seemed to inform how relationally connected they functioned during bereavement. When their previous caregiving experience was characterized by open communication and collaborative caregiving (i.e. functioning as a team), EYACs described a strengthened relational connection with their sibling(s) while grieving their parent. EYACs collaboration and lack of conflict during their parent’s illness seemed to extend to bereavement. Those dynamics promoted their support of each other through the grief process, including navigating the responsibilities of bereavement (e.g. making funeral arrangements, handling their parent’s estate): “[My sister and I are] still really close and talk every day and [are] leaning on each other as much as we can”(Brother, 33).

Conversely, when sibling dynamics during caregiving had not been characterized by openness, communal coping, or shared caregiving (and instead characterized by tension related to siblings’ lack of caregiving involvement), EYACs described negative impacts on their sibling relational connection. Those sibling dynamics established during caregiving could persist through their parent’s end-of-life care and in the immediate aftermath of their death. EYACs described how those dynamics contributed to two relational outcomes—estrangement or a worsened relational connection—which compounded their grief and distress:

How my brother acted was a huge catalyst for me to decide to pull back from that relationship. … [He] made me very angry. … [It] stymied my grief process because I was basically in panic mode. … [I had to] emotionally separate myself from a toxic relationship so that I could process my grief really … and be there for my mom [and] my sister. (Sister, 28)

EYACs who opted to maintain strained sibling relationships described being less reliant on emotional support. Some also acknowledge that their sibling was their only living family member, which heightened the importance of the relationship and the need to preserve it even though they had been hurt by their sibling:

I don’t want to call it distant, but it’s a very practical, pragmatic relationship. [My brother and I] know that we are the closest that either of us has to a reliable family member. (Sister, 23)

EYACs with multiple siblings also shared how their sibling dynamics—specifically how they communicated and worked together collaboratively (or not) during their parent’s cancer—informed different bereavement pathways with different siblings in the same family. One participant, referred to here as “Andrew,” age 30, described how his relationships with his older siblings were affected in varying ways after caring for their father. Andrew’s siblings were both less involved than him, and he expressed his frustration in feeling stuck with the caregiving role: “I’m the youngest of three. No one stepped up to do anything, so I had to do it. … It sucks, but someone has to.” However, the impact on his relational connectedness with his siblings during bereavement varied based on his perception of their caregiving role and situations.

For instance, Andrew voiced understanding that his sister’s lack of involvement stemmed from her responsibilities as a parent. He recognized that she made an effort to contribute when possible: “My sister had [a baby] at that time. She was 11 months old. So, she had a newborn, basically. She kind of had to take care of her, which I understand. Not a big deal.” In contrast, Andrew was incredibly frustrated with his brother for his lack of caregiving involvement and difficulty communicating, which led to extended conflict. Andrew believed his brother’s absence and lack of support with key caregiving tasks was the result of his inability to handle the distress of their father’s illness:

[My sister and I] were out there cleaning, and [my brother] is like, “All right, I’ll be right back. You guys just go ahead and start without me.” He never showed up. … I was getting very upset with him. … [But] he was shutting down essentially, emotionally.

In the days immediately preceding and following their dad’s death, the differences in his siblings’ support changed drastically. Andrew reported how his sister took on more emotionally challenging bereavement responsibilities, which strengthened their connection. In contrast, his brother pulled back from their family even further, refusing to help with bereavement responsibilities or support their mother, which further worsened their relational connection:

[My sister and I] tried to clean and change the room that he died in as much as possible for my mom. … We needed my brother to do something, and he was just downstairs playing video games. I was like, “Dude, come on.”…I’m closer to my sister now and not as close to my brother just because she was with me in the trenches whenever we were doing shit, and he was playing fucking video games.

Despite Andrew’s feelings of betrayal and disconnection, he chose not to dissolve his relationship with his brother and felt a responsibility to put his feelings aside and repair their relationship. Like many EYACs whose sibling relationships were damaged while caring for their parent, Andrew felt it was important to preserve his relationship with his brother to honor their deceased father: “My dad told me – he’s like, ‘Be patient with him.’… He had to keep telling us [that], and it’s like, ‘All right, Dad, you told me be patient. … He’s pushing, but I’ll be patient.’”

Synthesizing results

EYACs described three pathways in which their relationships with their siblings changed throughout the caregiving trajectory and into bereavement (Figure 1). Pathway 1 represents EYACs who communicated openly via mutual navigation of care decisions and communal coping being more capable of caregiving as a team with equal responsibilities. This resulted in strengthened relational connectedness and better grief support in bereavement. Pathway 2 represents EYACs whose openness in communication allowed for successful caregiving teams even when siblings had varying levels of involvement, which then facilitated enhanced connectedness in bereavement. Pathway 3 represents EYACs who had conflict and tension with their siblings over care decisions and felt as though they were functioning as the sole caregiver, which deprived siblings of the opportunity to support one another during their parent’s cancer. These EYACs ultimately experienced worsened relational connectedness, if not estrangement, in bereavement.

Discussion

This study explored the impact of caring for and losing a parent with advanced cancer on sibling relationships among emerging and young adults. EYACs’ communication patterns and caregiving involvement throughout the cancer trajectory varied, with some openly communicating and collaborating with their siblings, while others functioned as the sole caregiver with emotional distance from their siblings. We also identified how these factors cultivated EYACs’ relational pathways with their siblings throughout their parent’s cancer trajectory that ultimately impacted the connectedness of their sibling bond in bereavement. These results support existing work highlighting the variability of sibling relationship quality (Aldrich et al., 2022) and provide the first insights into this phenomenon within the context of advanced cancer caregiving and the unique developmental stage of emerging and young adulthood. Furthermore, much of cancer caregiving research is conducted among one specific caregiver—patient relationship, yet Family Systems Theory (FST) defines family as a complex unit of interdependent parts (Fisher et al., 2021; Galvin and Young, 2010). Our work addresses this critical gap by exploring EYACs as part of a family caregiving team composed of several individuals working interdependently, rather than focusing on the typical caregiver-patient dyad (Warner et al., 2023). Importantly, our findings identify specific factors in the parental caregiving experience integral to emerging and young adult siblings’ resulting relationship quality and point to potential avenues for intervention for this vulnerable caregiving population.

Research has highlighted the benefits of open family communication during cancer, particularly for EYACs. It is critical for parents to openly share illness information with their emerging and young adult children throughout their cancer trajectory (Kastrinos et al., 2024a), and our findings demonstrate that EYAC siblings also benefit from sharing information openly with each other. Family communication is especially pertinent for EYACs who experience higher rates of loneliness, lack social support, and have fewer friends than non-caregiving peers (D’Amen et al., 2021; Haugland et al., 2022). Caregiving simultaneously isolates EYACs from peers and increases time spent with their siblings, creating opportunities for open discussions about caregiving distress that can help normalize their feelings. Additionally, EYACs need greater support when deciding treatment options for their parents, making sibling communication even more important and decision-making conflict particularly devastating (D’Amen et al., 2021; Warner et al., 2023). Our findings highlight the critical role of open communication among EYAC siblings in navigating, and ideally reducing, caregiving-related distress.

Communal coping among families, facilitated by high-quality communication, can lessen the psychological and physical implications of cancer caregiving (Donovan and LeBlanc Farris, 2019; Helgeson et al., 2018). Examining adult child caregivers’ experiences, Bagautdinova et al. (2023) found that siblings were better able to cope together with their parent’s cancer, which enhanced their relationships. Consistent with the literature, our findings indicate that EYACs who reported open communication patterns also reported communal coping with their siblings; alternatively, EYACs who lacked openness with their siblings described coping alone. Notably, caregiver distress is primarily contingent upon a caregiver’s ability to cope with caregiving demands, regardless of the intensity of caregiving and/or illness severity (Applebaum et al., 2022). Considering EYACs are already at a higher risk for maladaptive coping strategies than older counterparts—including rumination, avoidance, wishful thinking, and substance use—poor communication among siblings may further worsen EYACs’ ability to cope with caregiving challenges (Fisher, 2010; Greene et al., 2017; Grenard et al., 2020; Peisch and Burt, 2022). On the other hand, communal coping develops a “supportive caregiving sibling network,” alleviating burden and enhancing family functioning (Bagautdinova et al., 2023; Bronfenbrenner, 1986; Tolkacheva et al., 2011). Communal coping among siblings, enabled through open communication, is critical for EYACs to process the emotional impacts of a parent’s cancer diagnosis.

EYACs also recounted varied levels of caregiving involvement among siblings. Previous research shows that in comparison to older adult cancer caregivers, EYACs are more likely to function as part of a caregiving team, with roles often determined by individuals’ strengths (Warner et al., 2023; Waters et al., 2021). This understanding is consistent with our participants’ accounts of their caregiving teams—including balanced teams in which siblings shared responsibilities equally as well as less balanced teams in which one sibling assumed primary caregiving responsibilities with their siblings helping in other ways. Ultimately, it was not the distribution of caregiving responsibility that determined siblings’ relational connectedness in bereavement, but their willingness to communicate about and understand one another’s roles. Thus, a successful EYAC sibling caregiving team hinges upon open channels of communication to allow for clear understanding of each other’s role and responsibilities, contributing to a feeling that caregiving tasks are shared equitably, if not equally. The caregiving team’s success was especially important in preserving sibling relationships into bereavement, alluding to how caregiving dynamics can shape both short- and potentially long-term relational outcomes.

Prior research among older adult siblings found that they experience both enhanced closeness and increased conflict in bereavement (Hank, 2021; Kalmijn and Leopold, 2019). Our findings demonstrate that for EYACs, communication quality and caregiving involvement critically impact sibling relational quality in bereavement. Bereaved emerging and young adults may be uniquely impacted, both acutely and chronically, by the non-normative death of a parent at this age, making the loss of sibling relational connectedness during this period even more damaging (Hank, 2021; Kalmijn and Leopold, 2019). In comparison to bereaved older adults, EYACs are at heightened risk for anxiety and depression, intense and prolonged grief, worsening health, and using substances to cope with the loss (Lundberg et al., 2018; Mash et al., 2014). While grieving, EYACs must also manage the lingering impacts of caring for a parent with advanced cancer, oftentimes experiencing posttraumatic stress, which worsens psychological distress during bereavement (Benedict et al., 2025; De Padova et al., 2021; Sanderson et al., 2013). Extant literature shows that familial support can improve emerging and young adults’ bereavement outcomes, and given the psychologically protective role of high-quality sibling relationships, sibling support may be uniquely impactful in buffering EYACs from experiencing negative psychosocial grief, and bereavement outcomes (Antony and Kapoor, 2024). Thus, our findings illuminate EYAC’s critical need for support during caregiving and in bereavement to provide them tools to avoid damaging their sibling relationships.

Taken together, our findings pose several potential avenues for intervention and add to recent calls for further research and supportive services beyond the patient-caregiver dyad by focusing on more comprehensive social support networks (Warner et al., 2023; Waters et al., 2021). As communication and responsibility-sharing were critical to relational quality during caregiving and early bereavement, we assert that siblings would benefit from psychosocial interventions strengthening family communication and conflict resolution skills. Several caregiver communication interventions exist but are primarily focused on relational challenges within patient-caregiver dyads rather than the broader family system, with even fewer including EYACs (Applebaum et al., 2023; Bylund et al., 2022; Kent et al., 2016; Ugalde et al., 2019; Walczak et al., 2018). New and existing communication interventions should be tailored to include strategies to navigate multiple family networks and incorporate the unique developmental and relationally specific needs of EYACs caring for parents with cancer. Furthermore, family systems-based therapy during active caregiving and bereavement may help EYACs navigate caregiving challenges and sibling conflicts (Mehta et al., 2009; Östlund et al., 2016; Wysocki et al., 2006). Additionally, grief support services (e.g. support groups, psychotherapy, and/or psychoeducation) provided to EYACs post-loss of a parent should include information and approaches to maintaining or mending sibling relationships while emphasizing the importance of healthy sibling relationship quality.

This study is not without limitations. As EYACs in our sample were still in early bereavement, longitudinal research with this population is needed to evaluate how caregiving dynamics impact sibling relational quality in the decades following their parent’s death. Additionally, this study presents the perspective of only one family member, the EYAC participating in the interview, whose siblings may have different perspectives of the caregiving experience. Future research should explore the perspectives of multiple siblings from the same family to more comprehensively understand family dynamics during caregiving. In addition, self-selection bias may be present in our sample as online caregiving and grief support groups are more likely to contain individuals who were acutely impacted by caregiving. Our sample was also predominantly white, female, and educated; although these demographic trends are common in caregiving literature, recent research has emphasized that culture and caregiving outcomes are highly intertwined (Falzarano et al., 2021; Zarzycki et al., 2023). Importantly, our findings may differ across Non-Western cultural groups where collectivism and familialism are more valued (Holmes et al., 2024; Kim et al., 2020; Ng and Indran, 2021). Future work should prioritize the inclusion of a more diverse sample, which would allow for greater examination into how EYACs’ cultural background may impact caregiving experiences among siblings.

Caring for a parent with advanced cancer is difficult at any age, but caregiving may be especially challenging during emerging and young adulthood when its occurrence is atypical and can interrupt important developmental processes. The caregiving experience can be further complicated when it is shared amongst siblings, as sibling relationships are particularly vulnerable during this life stage. While strong sibling bonds can be protective, sustaining them requires open communication and a shared understanding of caregiving roles. Without these, caregiving conflicts can permanently damage—and even destroy—sibling relationships. Interventions that foster communication skills among EYACs are crucial to improve coping with caregiving and prevent detrimental long-term fractures in sibling bonds.

Footnotes

Acknowledgements

We are grateful to the emerging and young adult caregivers who shared their stories and contributed to this research.

Author contributions

RG—Conceptualization, Methodology, Formal Analysis, Writing—Original Draft, Visualization, CF—Conceptualization, Methodology, Writing—Review & Editing, Supervision, KB—Validation, Writing—Review & Editing, LG—Validation, Writing—Review & Editing, ML—Writing—Review & Editing, Visualization, AA—Writing—Review & Editing, Supervision, Funding Acquisition, AK—Conceptualization, Methodology, Investigation, Formal Analysis, Writing—Original Draft, Supervision, Funding Acquisition.

Data sharing statement

The data that support the findings of this study are available on request from the senior author. The data are not publicly available due to privacy or ethical restrictions.

Declaration of conflicting interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Applebaum reports relationships with PsyOnc Partners, LLC, and Roon.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the University of Florida Health Cancer Center (UFHCC), and the National Cancer Institute Institutional Training Grant T32CA009461. Drs. Kastrinos and Applebaum acknowledge Cancer Center Support Grant, P30CA008748 issued to Memorial Sloan Kettering Cancer Center from the National Institutes of Health/National Cancer Institute. Dr. Kastrinos is also supported by National Institutes of Health/National Cancer Institute Award Number K99CA279651.

Ethics approval

The study was conducted in accordance with the Declaration of Helsinki and approved by the University of Florida Institutional Review Board on 7/27/20 (IRB202001910).

Informed consent

All participants provided informed consent to participate in the study.

Consent for publication

All participants provided informed consent for publication of deidentified findings from this study.

ORCID iDs

Rebecca R Gebert

Carla L Fisher

Amanda Kastrinos

References

Abazari

Chatterjee

Moniruzzaman

(2023) Understanding cancer caregiving and predicting burden: An analytics and machine learning approach. AMIA … Annual Symposium Proceedings/AMIA Symposium. Amia Symposium2023: 243–252.

Ahn

Esquivel

Davis

, et al. (2022) Cardiovascular disease incidence and risk in family caregivers of adults with chronic conditions: A systematic review. Journal of Cardiovascular Nursing 37(3): E47–E60.

Aldrich

Nomaguchi

Fettro

(2022) Life course statuses and sibling relationship quality during emerging adulthood. Journal of Family Issues 43(5): 1235–1262.

Amaro

(2017) Dyadic effects of gratitude on burden, conflict, and contribution in the family caregiver and sibling relationship. Journal of Applied Communication Research 45(1): 61–78.

Antony

Kapoor

(2024) Portraits of life after loss: Understanding parental loss within a social context. Journal of Family Issues 45(10): 2473–2499.

Applebaum

Gebert

Behrens

, et al. (2023) Development and feasibility of a communication training to assist caregivers with advanced care planning. Palliative & Supportive Care 21(2): 188–195.

Applebaum

Loschiavo

Morgan

, et al. (2022) A randomized controlled trial of emotion regulation therapy for cancer caregivers: A mechanism-targeted approach to addressing caregiver distress. Contemporary Clinical Trials 122: 106923.

Arnett

(2000) Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist 55(5): 469–480.

Bagautdinova

Bylund

Kastrinos

, et al. (2023) Adult sibling-related experiences while caring for a parent diagnosed with a blood cancer. Families Systems & Health 41(2): 140–148.

10.

Baxter

Bullis

(1986) Turning points in developing romantic relationships. Human Communication Research 12: 469–493.

11.

Benedict

Landa

Shaykevich

, et al. (2025) A systematic review of cancer-related trauma and growth in caregivers across the lifespan. Psycho-oncology 34(1): e70047.

12.

Bronfenbrenner

(1986) Ecology of the family as a context for human development: Research perspectives. Developmental Psychology 22(6): 723–742.

13.

Bylund

Wollney

Campbell-Salome

, et al. (2022) Improving clinical and family communication for adult child caregivers of a parent with a blood cancer: Single-arm pre-post pilot intervention. JMIR Cancer 8(3): e38722.

14.

De Padova

Grassi

Vagheggini

, et al. (2021) Post-traumatic stress symptoms in long-term disease-free cancer survivors and their family caregivers. Cancer Medicine 10(12): 3974–3985.

15.

Donovan

LeBlanc Farris

(2019) Interpersonal communication and coping with cancer: A multidisciplinary theoretical review of the literature. Communication Theory 29(2): 236–256.

16.

D’Amen

Socci

Santini

(2021) Intergenerational caring: A systematic literature review on young and young adult caregivers of older people. BMC Geriatrics 21(1): 105.

17.

Falzarano

Moxley

Pillemer

, et al. (2021) Family matters: Cross-cultural differences in familism and caregiving outcomes. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences 77(7): 1269–1279.

18.

Fisher

(2010) Coping with breast cancer across adulthood: Emotional support communication in the mother–daughter bond. Journal of Applied Communication Research 38(4): 386–411.

19.

Fisher

Mullis

Kastrinos

, et al. (2021) “Home wasn’t really home anymore”: Understanding caregivers’ perspectives of the impact of blood cancer caregiving on the family system. Supportive Care in Cancer 29(6): 3069–3076.

20.

Fitzgerald

Surra

(1981) Studying the development of dyadic relationships: Explorations into a retrospective interview technique. National Council on Family Relations Pre-Conference Workshop on Theory Construction and Research Methodology, Milwaukee, WI.

21.

Galvin

Young

(2010) Family systems theory. In: Gaff

Bylund

(eds) Family Communication About Genetics: Theory and Practice. New York, NY: Oxford University Press, pp.102–119.

22.

Glaser

Strauss

(1967) Grounded theory: The discovery of grounded theory. Sociology the Journal of the British Sociological Association 12(1): 27–49.

23.

Goldblatt

Granot

Zarbiv

(2019) “Death Lay here on the sofa”: Reflections of young adults on their experience as caregivers of parents who died of cancer at Home. Qualitative Health Research 29(4): 533–544.

24.

Greene

Cohen

Siskowski

, et al. (2017) The relationship between family caregiving and the mental health of emerging young adult caregivers. Journal of Behavioral Health Services & Research 44(4): 551–563.

25.

Grenard

Valencia

Brown

, et al. (2020) Impact of caregiving during emerging adulthood on frequent mental distress, smoking, and drinking behaviors: United States, 2015-2017. American Journal of Public Health 110(12): 1853–1860.

26.

Gross

(2018) Scissors and Glue: The Impact of Parental Death on Adult Sibling Relationships. Available at: https://www.drjillgross.com/blog/scissors-and-glue-the-impact-of-parental-death-on-adult-sibling-relationships (accessed February 12).

27.

Gungordu

Hernandez-Reif

(2022) Sibling relationship dynamics relate to young adults’ empathic responding. Journal of Family Studies 28(2): 785–799.

28.

Halliwell

Wenzel Egan

Howard

(2017) Flying in a V formation: Themes of (in)equity, reality, and togetherness in adult siblings’ narrative explanations of shared parental caregiving. Journal of Applied Communication Research 45(3): 256–273.

29.

Hank

(2021) Linked in life and Death: A Note on the effect of parental death on sibling relations in Young and middle adulthood. Journal of Family Issues 42(11): 2679–2690.

30.

Haugland

BSM

Hysing

Sivertsen

(2022) Study progress, recreational activities, and loneliness in young adult carers: A national student survey. BMC Psychology 10(1): 43.

31.

Helgeson

Jakubiak

Van Vleet

, et al. (2018) Communal coping and adjustment to chronic illness: Theory update and evidence. Personality and Social Psychology Review 22(2): 170–195.

32.

Holmes

O’Donnell

Lovato

, et al. (2024) Exploring sibling relationship quality among Latinx siblings: A systematic review. Behavioral Sciences14: 624.

33.

James-Kangal

Whitton

(2019) Conflict management in emerging adults’ “nonrelationships”. Couple and Family Psychology: Research and Practice 8(2): 63–76.

34.

Jensen

Nielson

Yorgason

(2020) The longest-lasting relationship: Patterns of contact and well-being among mid- to later-life siblings. Journals of Gerontology Series B 75(10): 2240–2249.

35.

Jensen

Whiteman

Fingerman

(2018) “Can’t live with or without them:” transitions and young adults’ perceptions of sibling relationships. Journal of Family Psychology 32(3): 385–395.

36.

Kalmijn

Leopold

(2019) Changing sibling relationships after parents’ death: The role of solidarity and Kinkeeping. Journal of Marriage and Family 81(1): 99–114.

37.

Kastrinos

Bacharz

Mroz

, et al. (2023) A mixed-method examination of emerging and young adult cancer caregivers’ experiences during the COVID-19 Pandemic. International Journal of Environmental Research and Public Health 20(8): 5537.

38.

Kastrinos

Bylund

Bacharz

, et al. (2024a) Understanding the role of parents’ information sharing and withholding on emerging and young adults’ caregiving and coping during their parents’ advanced cancer. Journal of Psychosocial Oncology 42(3): 412–426.

39.

Kastrinos

Fisher

Bagautdinova

, et al. (2024b) Applications of turning point analysis in behavioral medicine research: A systematic scoping review. Social Science & Medicine 351: 116987.

40.

Kent

(2020) Time to recognize and support emerging adult caregivers in Public Health. American Journal of Public Health 110(12): 1720–1721.

41.

Kent

Rowland

Northouse

, et al. (2016) Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer 122(13): 1987–1995.

42.

Khodyakov

Carr

(2009) The impact of late-life parental death on adult sibling relationships: Do parents’ advance directives help or hurt? Research on Aging 31(5): 495–519.

43.

Kim

Rogers

Szkody

, et al. (2020) Caregiver relationships and distress moderated by collectivism. Innovation in Aging 4(Suppl 1): 344.

44.

King McLaughlin

Greenfield

Hasche

, et al. (2019) Young adult caregiver strain and benefits. Social Work Research 43(4): 269–278.

45.

Lambrias

Ervin

Taouk

, et al. (2023) A systematic review comparing cardiovascular disease among informal carers and non-carers. International journal of cardiology. Cardiovascular risk and prevention 16: 200174.

46.

Litzelman

(2019) The unique experience of caregivers based on their life stage and relationship to the Patient. In: Applebaum

Applebaum

(eds) Cancer Caregivers. New York, NY: Oxford University Press, pp. 34–81.

47.

Lundberg

Forinder

Olsson

, et al. (2018) Bereavement stressors and psychosocial well-being of young adults following the loss of a parent – A cross-sectional survey. European Journal of Oncology Nursing 35: 33–38.

48.

Mash

HBH

Fullerton

Shear

, et al. (2014) Complicated grief and depression in young adults: Personality and relationship quality. Journal of Nervous and Mental Disease 202(7): 539–543.

49.

McHale

Updegraff

Whiteman

(2013) Sibling Relationships. In: Peterson

Bush

(eds) Handbook of Marriage and the Family. Boston, MA: Springer US, pp.329–351.

50.

Meadows

Morse

(2001) Constructing evidence within the qualitative project. In: Morse

Swanson

Kuzel

(eds) The Nature of Qualitative Evidence. Thousand Oaks: Sage, pp. 188–201.

51.

Mehta

Cohen

Chan

(2009) Palliative care: A need for a family systems approach. Palliative & Supportive Care 7(2): 235–243.

52.

Morse

Barrett

Mayan

, et al. (2002) Verification Strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods 1(2): 13–22.

53.

Mroz

Kastrinos

Bacharz

, et al. (2025) “A little bit different now”: Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood. Death Studies 49(2): 188–199.

54.

National Alliance for Caregiving (2020) Caregiving in the U.S. Washington DC: AARP (accessed November 5).

55.

Indran

(2021) Societal perceptions of caregivers linked to culture across 20 countries: Evidence from a 10-billion-word database. PLoS One 16(7): e0251161.

56.

Östlund

Bäckström

Saveman

, et al. (2016) A family systems nursing approach for families following a stroke: Family health conversations. Journal of Family Nursing 22(2): 148–171.

57.

Owen

(1984) Interpretive themes in relational communication. Quarterly Journal of Speech 70(3): 274–287.

58.

Peisch

Burt

(2022) The structure and function of coping in emerging adults. Current Psychology 41(7): 4802–4814.

59.

Pope

Baldwin

Lee

(2018) “I didn’t expect to learn as much as I did”: Rewards of caregiving in young adulthood. Journal of Adult Development 25: 186–197.

60.

Potier

Degryse

J-M

de Saint-Hubert

(2018) Impact of caregiving for older people and pro-inflammatory biomarkers among caregivers: A systematic review. Aging Clinical and Experimental Research 30(2): 119–132.

61.

Sanderson

Lobb

Mowll

, et al. (2013) Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study. Palliative Medicine 27(7): 625–631.

62.

Seaman

(2015) Caring for the Caregiver: Exploration of Sibling Connection and Social Support in Relationships of Adult Siblings Caring for Aging Parents With Dementia. Greensboro, North Carolina: The University of North Carolina at Greensboro.

63.

Shilling

Starkings

Jenkins

, et al. (2017) The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers. Journal of Cancer Survivorship 11(5): 590–603.

64.

Strauss

Corbin

(eds) (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd edn. Thousand Oaks, CA, US: Sage Publications, Inc.

65.

Sumbas

(2022) The analysis of sibling relations of adolescents, young adults and adults. Ulakbilge Sosyal Bilimler Dergisi 10(75): 801–823.

66.

Tolkacheva

Van Groenou

DE Boer

, et al. (2011) The impact of informal care-giving networks on adult children’s care-giver burden. Ageing and Society 31(1): 34–51.

67.

Ugalde

Gaskin

Rankin

, et al. (2019) A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice. Psycho-oncology 28(4): 687–701.

68.

Walczak

McDonald

Patterson

, et al. (2018) How does parental cancer affect adolescent and young adult offspring? A systematic review. International Journal of Nursing Studies 77: 54–80.

69.

Waldinger

Vaillant

Orav

(2007) Childhood sibling relationships as a predictor of major depression in adulthood: A 30-year prospective study. American Journal of Psychiatry 164(6): 949–954.

70.

Warner

Hebdon

Tay

, et al. (2023) Young adult cancer care partners: A theoretical description of an emerging population with unique needs. International Journal of Environmental Research and Public Health 20(17): 6646.

71.

Waters

Gren

Rogers

, et al. (2021) Qualitative inquiry of cancer caregiving during young adulthood: Responsibilities, challenges, teamwork, and social support. Journal of Psychosocial Oncology Research and Practice 3(4): e062.

72.

Kim

JHJ

Nagata

, et al. (2018) Perceptions of sibling relationships and birth order among Asian American and European American Emerging Adults. Journal of Family Issues 39(13): 3641–3663.

73.

Wysocki

Harris

Buckloh

, et al. (2006) Effects of behavioral family systems therapy for diabetes on adolescents’ family relationships, treatment adherence, and metabolic control. Journal of Pediatric Psychology 31(9): 928–938.

74.

Zarzycki

Morrison

Bei

, et al. (2023) Cultural and societal motivations for being informal caregivers: A qualitative systematic review and meta-synthesis. Health Psychology Review 17(2): 247–276.