The Lived Experience of Siblings of Children With Cancer Who Attended a Peer Support Camp in the United States

Abstract

Childhood cancer has a profound and negative impact on siblings, yet there are limited studies exploring lived experiences from their perspective. This qualitative study examined the perceptions and experiences of siblings of children with cancer who attended a peer support camp. Semi-structured interviews were conducted three to six weeks after the weeklong peer support camp with a stratified random sample of 10 siblings (six non-bereaved and four bereaved) ages 8 to 16 years. The qualitative data were analyzed using conventional content analysis and an inductive data-driven approach. Four themes emerged: social connection (subthemes: support/feeling of belonging, mentorship, and expressing feelings), personal growth, identity, and freedom to have fun and relax. These findings add to the scant body of research by providing enhanced understanding of the siblings’ experiences and new insights into their perceptions of meaning and outcomes associated with participation in a peer support camp. These findings have implications for peer support camp programs and the well-being of siblings of children with cancer.

Keywords

at-risk youth cancer sibling peer support lived experience well-being

Introduction

Approximately one in every 250 children in the United States will be diagnosed with cancer before the age of 20 (American Cancer Society, 2019). The stress that a cancer diagnosis brings to a family significantly impacts the family unit as a whole, as well as individual relationships within the family. In particular, sibling relationships are compromised due to the disruption of family routines and constant worry about the sick sibling (Author, 2005; Ballard, 2004; Gerhardt et al., 2015; Zegaczewski et al., 2016).

The sibling relationship is a powerful and unique bond. It is an enduring relationship throughout the lifespan (Buist et al., 2013). The relationship plays an important role in the socialization and development of children (Dunn, 2015). Siblings have an impact on each other’s cognitive, social, and emotional development, serving as companions, confidants, and role models (Dunn, 2015; McHale et al., 2012; Whiteman et al., 2011). Social dynamics between siblings help to shape individual characteristics and well-being (McHale et al., 2012; Sidhu et al., 2006; Whiteman et al., 2011). Thus, understanding how childhood cancer affects siblings is essential to identifying and addressing their psychosocial needs.

Childhood cancer is a life changing experience that leads to intense feelings and unmet needs for siblings (Long et al., 2015; Nolbris & Ahlström, 2014; Prchal & Landolt, 2012; Tasker & Stonebridge, 2016; Wilkins & Woodgate, 2005). Several studies have examined siblings’ perceptions of the impact of childhood cancer on their lives such as disruption in family routine, decreased attention from parents, and negative emotions (e.g., anger, jealousy, guilt) (Foster et al., 2012; Long et al., 2015; Nolbris et al., 2007; Prchal & Landolt, 2012; Samson et al., 2016; Van Schoors et al., 2019; Woodgate, 2006; Yu & Bang, 2015). Siblings expressed a belief that their needs were not as important as those of their siblings with cancer (Prchal & Landolt, 2012; Woodgate, 2006; Yu & Bang, 2015). They shared that they did not want to add to their family’s burden, which contributed to their own needs being neglected. The combination of these events can negatively impact siblings’ emotional health due to their experiencing disruptions in routine, being worried, feeling insignificant, and not being able to talk about their feelings. (Long et al., 2018; Patterson et al., 2011).

Through all phases of the cancer journey, siblings experience loss and grief that is most profound with the death of a brother or sister (Fletcher, 2010; Foster et al., 2012; Rosenberg et al., 2015). How families process grief significantly impacts how surviving siblings adapt to the loss (Long & Marsland, 2011). Parental grief often limits their emotional capacity to support the needs of surviving children; bereaved siblings often feel they need to protect their parents by not mentioning the deceased, because they believe it will contribute to parental distress (Balk, 2009; DeCinque et al., 2004). Research suggests that without support, bereaved siblings are at risk of long-term emotional distress and impaired well-being (Alderfer et al., 2010; Brown & Goodman, 2005; Paris et al., 2009).

During the past decade, the literature has expanded beyond identification of the unmet needs of siblings to begin to explore opportunities and services that strengthen their understanding of the cancer experience, provide psychosocial support, and promote emotional health (Franklin et al., 2018; Gerhardt et al., 2015; Long et al., 2018; Prchal & Landolt, 2009). The research suggests that siblings of children with cancer would benefit from structured support from others who have similar experiences. However, such peer support services are not readily available (Wiener et al., 2015). Peer support has been described as an effective approach in which individuals with shared life experiences can offer authentic empathy, validation, and practical advice (Mead & MacNeil, 2006). Research has indicated that successful peer support groups contribute to healthy development and positive outcomes by incorporating a sense of community, flexibility in the kind of support provided (e.g., activities, discussions), mutual respect, shared responsibility, and an emotionally safe environment (Heisler, 2007; Journot-Reverbel et al., 2017; Lauzier-Jobin & Houle, 2021; Lewis et al., 2016; Mead & MacNeil, 2006; Repper & Carter, 2011; Turner, 1999).

Although there is evidence that peer support groups for siblings of individuals with illnesses and disabilities have a positive impact on psychosocial well-being, the availability of support groups focused on the needs of siblings of children with cancer and access to them is limited (Ballard, 2004; Gerhardt et al., 2015). A significant barrier to availability is lack of resources (funding, trained psychosocial staff, and standardized screening tools) (Gerhardt et al., 2015). In addition, sibling participation in the limited support groups available is poor due to a variety of factors including the family’s focus on the unpredictability of the cancer’s progression, the treatment, and its effects (Sidhu et al., 2006), the sibling’s resistance to attending, and challenges related to scheduling around other priorities (Gerhardt et al., 2015). However, based on the positive outcomes associated with peer support camps for children with a variety of chronic illnesses (Gillard et al., 2011; Heisler, 2007; Journot-Reverbel et al., 2017; Lewis et al., 2016; Mead & MacNeil, 2006; Repper & Carter, 2011; Turner, 1999), a peer support camp for siblings of children with cancer may be a practical option to address their unique psychosocial needs (Sidhu et al., 2006).

A systematic review of the literature indicated that a few studies have identified a need to develop and implement services, such as peer support camps, that facilitate communication about the cancer experience as well as increase siblings’ social support (Long et al., 2018). The perceptions of siblings of children with cancer who attended peer support camps have only been examined using qualitative methods in two studies (Author, 2005; Roberson, 2010). Author (2005) conducted sibling interviews to better understand the impact of a peer support camp in California on the quality of life (QoL) of siblings of children with cancer. The study followed an inductive approach to discover predominant themes that were common to the siblings’ experiences at the peer support camp. The six core psychosocial themes that emerged can be described as sense of belonging, social learning, shared life experiences, optimism and growth, learning from others, and expressing feelings. The study reported that the siblings’ opportunity to socialize and connect with other siblings of children with cancer at camp, as well as the positive recognition from supportive counselors, contributed to these identified themes.

Roberson (2010) used a phenomenological approach to determine how siblings perceived social support and to gain an understanding of what processes occurred at the three-and-a-half-day camp in Texas that led to the perceived social support. The themes that emerged were emotional, informational, instrumental, and appraisal support, as well as a sense of belonging. The study also revealed that the siblings’ perceptions of social support were influenced by aspects of camp that focused on their shared circumstances and needs.

The two qualitative studies provided valuable insights and gave siblings of children with cancer an opportunity to give a voice to their perceptions. However, these studies were limited in their focus on QoL or social support. Nevertheless, they provided a strong foundation for broader exploration of the impact of the camp experiences. The aim of this study was to build upon the scant body of knowledge and address the gaps in the literature by exploring the perspectives and experiences of siblings of children with cancer who attended a weeklong peer support camp.

Methods

Design

This qualitative study is part of a longitudinal multimethod study that aimed to understand the influence of a peer support camp on siblings of children with cancer. The overall research question for the larger study was as follows: What are the effects of participation in a weeklong support camp for siblings of children with cancer on anxiety, post-traumatic stress symptoms, self-esteem, resilience, post-traumatic growth, and quality of life? The qualitative arm of this research sought to better understand the perspectives and lived experiences of siblings of children with cancer who attended a peer support camp. The study employs tenets of phenomenology focused on exploring, investigating, and interpreting participant views. The qualitative inquiry provides a voice to this vulnerable group often described as invisible children (Alderfer et al., 2015; Franklin et al., 2018; Long et al., 2018; Spencer et al., 2020).

Setting

In 1983, a non-profit organization implemented a weeklong camp specifically designed for children diagnosed with cancer. Several years later, families impacted by childhood cancer shared that the siblings of children with cancer would benefit from a similar camp experience focused on supporting their unique needs. As a result, the non-profit organization partnered with a regional 4-H camp to implement a seven-day peer support camp exclusively for siblings of children with cancer. The camp serves approximately 110 siblings between the ages of seven and 16 annually. The camp is free to families with an option to contribute a financial donation. The majority of the volunteer camp staff are young adult siblings of children with cancer. The leadership team consists of a small group of non-sibling professionals (a pediatric nurse practitioner, a recreational therapist, educators, and a social worker) as well as several young adult siblings who are committed to program planning year-round. They provide staff orientation and training, assessment of individual camper needs, program structure and development, leadership, and adult mentorship.

The leadership team assigns individuals to cabin groups based on age, gender, and phase of the sibling’s cancer journey. Sibling counselors are matched according to their personal cancer experience. For example, bereaved campers will have at least one bereaved counselor assigned to their cabin. Most of the counselors were former campers and ranged in age from 17 to 35 years. To promote mentorship and attention from caring adults, the counselor to camper ratio is approximately 1:3.

A typical day consists of traditional camp activities (e.g., arts and crafts, canoeing, and sports), a counselor in training (CIT) leadership class for 15 and 16-year-old siblings, camp-wide team building experiences, and an evening campfire. The traditional camp activities, program elements, and structure are modeled on a regional accredited 4-H camp.

In addition to traditional camp activities, this camp offers peer support program experiences that address the unique needs of siblings of children with cancer to talk about their experiences and feelings of sadness, anger, guilt, and fear (Franklin et al., 2018; Long et al., 2013, 2018; Samson et al., 2016). A daily structured program called facilitated chat time (FCT) includes trained mentors (camp counselors) who understand the impact of childhood cancer on siblings in an emotionally safe environment for siblings to share their stories and feelings (Heisler, 2007; Journot-Reverbel et al., 2017; Lewis et al., 2016; Mead & MacNeil, 2006; Repper & Carter, 2011; Turner, 1999). Team building activities and creative expression projects are incorporated into the FCT experience to empower siblings to share feelings, memories, and practical advice. The camp offers two FCT experiences specifically designed for bereaved siblings (B Chat) during the week, and these are facilitated by a recreational therapist, social worker, and camp counselors who share the life experience.

A ceremonial campfire and evening program provide closure at the end of the week. The campfire activities focus on recognizing the unique bond and community created during the week. The evening program reinforces elements of the camp experience that generated peer support and social connection.

Participants

Following Institutional Review Board approval, participants were recruited from a broader multimethod study (n = 81) designed to explore the influence of the peer support camp on siblings who attended the camp in 2019. The criteria for inclusion in this qualitative study required that individuals were a sibling (ages 7 through 16) of a child with cancer who was on treatment, up to three years post-treatment, or bereaved, and living in the same household as their sibling at time of diagnosis and treatment. Participants were excluded if they did not attend the full week of camp and only one sibling per family could participate.

To identify the potential sample for the qualitative interviews, a stratified random sampling method was employed to elicit different perceptions from the subgroups of non-bereaved and bereaved siblings. First, the multimethod sample (n = 81) was divided into non-bereaved (n = 62) and bereaved (n = 19) groups. Initially, five siblings from each group were selected using a number generating technique. Three parents of the selected sample (two non-bereaved, one bereaved) did not respond. Therefore, five additional siblings (three non-bereaved and two bereaved) were selected. A target sample size of 10 siblings (six non-bereaved, four bereaved) was obtained. The sample size is considered adequate based on the information power of the interview sample and the ability to identify themes and analyze cross-case themes (Braun & Clarke, 2012; Malterud et al., 2016). The information power model guided the decision to establish a sample size of 10 based on having a focused aim, specific study sample, use of an established theory (sibling relationships), high quality interview protocol, and a rigorous data analysis strategy (Malterud et al., 2016). The sample size was re-evaluated after the interviews and determined to have adequate information power based on the results sufficiently achieving the study’s purpose and contributing to new knowledge. Parents provided informed consent, and siblings assented prior to participating in the study. To ensure confidentiality, participants are described by age group. For the purpose of this manuscript, school-aged is defined as ages 7 to 9, pre-teen 10 to 12, and teen 13 to 16.

Data Collection Procedures

Due to slow responses and scheduling issues, interviews were conducted mid-August through September 2019, approximately three to six weeks after camp. In order to enhance timeliness in scheduling, the Principal Investigator (PI) and two research assistants (RAs) known by the campers divided responsibility for conducting the one-to-one semi-structured phone interviews. This allowed for each interviewer to coordinate the interviews with their work schedule and at a convenient time for their designated participants. Researchers and interviewees were matched randomly. Prior to the interviews, the PI met with the RAs to review the protocol for conducting the interviews (e.g., instructions for obtaining verbal assent, confidentiality, recording processes, interview scripts, and follow-up questions to encourage detailed responses). This training included practicing an adaptable, compassionate, and patient approach necessary when interviewing children and using qualitative research practices such as prompting, probing and active listening (Eastham & Kaley, 2020; Vandermause et al., 2017). See Supplemental Appendix A, interview protocol. Each interview lasted approximately 15 to 30 minutes.

The established relationship and rapport between interviewers and participants facilitated an open and in-depth dialogue (Guillemin & Heggen, 2009). This intentional approach elicited the siblings’ voices on a range of topics staying true to the aim of the research (Eastham & Kaley, 2020; Spencer et al., 2020; Vandermause et al., 2017). In an effort to reduce bias, the PI and RAs practiced reflexive journaling and mind map bracketing before and throughout the data collection process (Bergen & Labonté, 2020; Creswell & Poth, 2018; Tufford & Newman, 2012). To decrease social desirability, the interviewers employed strategies such as semi-structured questioning, delving for more information, requesting examples, and providing assurances (Bergen & Labonté, 2020). For example, participants were informed that there were no right or wrong answers and that their feedback would help to improve future services and programs for siblings. Parents were asked to let their children participate independently in the phone interviews in a space that minimized parental influence and where they could have privacy for unguarded responses. To our knowledge, parents did not participate in the sibling interviews.

Data Analysis

Individual audio recordings were imported into Dedoose, a web-based app for transcribing and categorizing qualitative data (https://www.dedoose.com). Completed transcripts were checked for accuracy prior to analysis by listening to the recorded interviews again and comparing them to the written transcripts to ensure that they matched verbatim. Interview transcripts were analyzed using conventional content analysis and an inductive data-driven approach (Creswell & Poth, 2018; Hsieh & Shannon, 2005; Marshall & Rossman, 2011; Patton, 2014; Thomas, 2006). This is a commonly used qualitative data analysis approach when existing research related to the phenomena is limited. The process involves a rigorous and systematic reading and coding of the transcripts allowing major themes to emerge (Hsieh & Shannon, 2005; Patton, 2014; Thomas, 2006). During this phase of the process, some codes were combined or identified as a related subtheme to an overarching theme. Finally, definitions for each theme and subtheme were developed (Hsieh & Shannon, 2005).

A coding consistency check procedure frequently used in content analysis was conducted to assess and enhance the trustworthiness and rigor of the data analysis (Thomas, 2006). The process involved having a second researcher not familiar with the peer support camp review the raw data used to develop codes and to perform independent coding. The PI provided written materials to the second researcher (detailed instructions, the objective of the study, excel spreadsheet with raw data, an article describing coding consistency procedures for conventional content analysis, and bracketing techniques). This was followed up with additional training via a phone meeting, which involved discussing the written information, reviewing conventional content analysis, answering questions about the process, and bracketing techniques.

The second researcher independently reviewed the verbatim transcripts to identify codes and emerging themes. The PI met with this second researcher by phone to compare their interpretations of codes and the meanings and themes that emerged. The initial percent agreement was 88%. It was calculated by dividing the total number of agreed upon coded texts by the total number of coded texts. The PI and second researcher met a second time via Zoom to address discrepancies in the findings and reach 100% agreement on the results (Creswell & Poth, 2018; Patton, 2014). To enhance credibility and trustworthiness, the PI wrote personal biases, opinions, and experiences related to interactions with the siblings at camp in a bracketing mind map before and during data analysis. The PI frequently reviewed and added to this document throughout the process. In addition, the PI practiced reflexivity by documenting ideas related to potential concepts and codes while reading and analyzing the transcripts. The second researcher used the bracketing technique of writing personal thoughts and potential biases in the margins of the coding spreadsheet.

Results

Thirteen campers were invited via email to participate in the qualitative study. Ten parents confirmed interest and scheduled phone interviews for their children. The participants in the interviews included six non-bereaved and four bereaved siblings. Non-bereaved siblings, ages 8 to 15, reflected a range of phases in the cancer experience from newly diagnosed to post-treatment. The four bereaved siblings ranged in age from 12 to 16. Two of the participants were CITs (one bereaved and one non-bereaved). Refer to the supplemental table for additional sibling demographics.

Four themes emerged from the data analysis: social connection, personal growth, identity, and freedom to have fun and relax. With regard to social connection, three subthemes emerged: support/feeling of belonging, mentorship, and expressing feelings. Verbatim quotes are presented to clarify individual perspectives presented within the aggregate data set.

Social Connection

All siblings in this study reported experiencing social connection (i.e., close and positive relationships). Participants described a sense of closeness and appreciation with regard to connecting with others at the camp who understood what they were going through. Social connection is further described in the following subthemes.

Support/Feeling of Belonging

For the purpose of this study, peer support is broadly defined as a reciprocal relationship and is expressed through encouragement and assistance that people with shared life experiences offer each other (Mead & MacNeil, 2006). Feeling of belonging refers to acceptance as a member of a group. Siblings often stated that social connection contributed to a sense of belonging, acceptance, and recognition that they were not alone. Overall, participants described the camp as a supportive environment where being with others who had shared experiences was meaningful. They experienced supportive relationships with peers at camp and articulated how those experiences differed from their interactions with peers at school.

A week before camp, my sister relapsed. So, just being able to talk about that at camp and having people really understand it, it’s less like pity. Whereas at school, if I tried to explain that, a lot of kids would just feel bad and not know how to say anything. At camp, everyone knows what it was like and they were able to support you, but also understand what you were really going through (pre-teen).

A bereaved teen also commented on the experience with peer support at the camp compared to peer support with friends at school:

The kids at my school, like, they never really understood my situation because having a sibling die, it hurts way more than a grandmother or grandfather because they’re in your inner family and you have a special connection with them. Being at camp with other kids who have experienced what I’ve gone through makes me feel like I have support around me.

Most participants observed that support from peers was a valuable experience. For some, it was the first time they met another sibling with a similar childhood cancer experience. They anticipated opportunities to continue to support each other outside of camp:

I learned so much from other siblings. I learned that they went to the same hospital as me and we may have actually seen each other in the art room. Now we can look for each other [at the hospital] and continue to share ways to deal with difficult stuff and support each other after camp (pre-teen).

Some participants shared perspectives on how helpful it was to receive support from others at camp. For example, a teen said, “There are people here who can help you. People who want to help you and like have already dealt with the same problems and know what it is like.” A bereaved teen shared, “I am surrounded by people who understand my pain and they know what I have been through.”

Some spoke specifically about experiencing a sense of community at the camp. Participants shared that being with other siblings, including counselors and CITs, helped them know they were not alone. For example, a bereaved pre-teen said, “The people here are just like me. I think it is kind of cool knowing that I’m not alone.” Other participants in the study described feeling accepted and comforted by the shared life experiences that are unique to siblings of children with cancer. For example:

I had cabin mates and counselors that I could connect with and do all these fun activities. I learned that a lot of my friends just like me argue with their brother and feel bad about it because, something could happen to them, and we could lose them forever. It felt good to know that I wasn’t the only one who felt that way (pre-teen).

Several bereaved siblings in this study spoke about the importance of a sense of community within B chat, the special chat group for bereaved siblings. For example, a bereaved teen described how B chat provided a community of understanding that was special:

B chat time is something special for like, a certain amount of us where we’ve gone through having to deal with our sibling passing away. Because, for me, that’s like a whole different type of situation. You don’t have your sibling there with you anymore. Unlike these other kids who still are with their siblings.

Another participant spoke about not being ready to attend B chat the year after their sibling’s death. They reported feeling glad to be encouraged to attend the following year (2019) by a respected bereaved counselor. The bereaved teen described these feelings about the B chat experience:

B chat definitely helped me grow as a person. Like talking to people and being able to understand that there really is a community here for me. It helped me out a lot. People can relate and understand what I’m going through. People aren’t feeling sorry for me or acting that way because I lost a sibling, but because we can relate to each other.

Another bereaved teen shared “I don’t generally like to talk to people about my sister but during B chat I feel more open because everyone is just like me.” Participants attributed the caring and understanding support of counselors/adults experienced at camp as contributing to a distinct subtheme of mentorship.

Mentorship

Mentorship consists of learning from others who have substantial personal experience as a sibling of a child with cancer who attended the peer support camp (Maslow & Chung, 2013). Several participants described counselors and adults at this camp as mentors. They described counselors as role models who demonstrated that it was okay to have fun even though you are dealing with difficult situations. For example, a school-aged participant shared, “I learned from my counselors that even adults can go through some really hard stuff. My counselor taught me that it’s okay to have fun and be sad at the same time.” A teen also described adults at camp as role models stating, “We all have gone through or are going through this cancer experience. There are older people that I can look up to and try to be like when I become a counselor.”

Expressing Feelings

Expressing feelings refers to sharing emotions (e.g., fear, sadness, jealousy, and anger). The majority of participants agreed that the peer support camp gave them a chance to openly express feelings. They described how hearing about other siblings’ experiences and feelings helped them to open up about their own. Some, in particular, spoke of how the FCT helped them to express their feelings:

I used to keep everything bottled up. When I was at camp this year, I just got everything out. I realized that I can’t just keep everything bottled up and that I need to talk about how my brother’s cancer makes me feel. Listening to others share their stories during chat room showed me that cancer has affected everyone’s life. It is good to know that I have people who support me and that I don’t need to keep these feelings to myself (bereaved teen).

Siblings also described the validation they experienced when they expressed feelings and learned that others felt the same way:

Um, I think it [FCT] is great because it’s an opportunity to open up and like, not feel so held in all the time. It’s like you can communicate with others. Some friends will even feel the same way about some topics (bereaved teen).

A bereaved pre-teen revealed trying not to talk about their sister’s death in the cabin group, not wanting others to be afraid their sibling would die. The participant elaborated on being able to share feelings with others who share the life experience of losing a sibling:

B chat is where I can speak openly about it and that’s great. They [bereaved siblings] know how to help me, like with the mask. Sometimes I feel like you hide yourself because I don’t like talking about it [sister’s death] but with the mask, it helped me figure out that it’s okay to talk to people who understand.

Personal Growth

Personal growth is depicted in this study as life lessons, new responsibilities, and learning new ways to cope with the challenges associated with being a sibling of a child with cancer. For example, “Camp made me feel like I was learning something, but it wasn’t like school, or being book smart. It’s more like life lessons” (pre-teen). Both CITs in this study discussed taking on new responsibilities. As reflected in the following CIT comments, these new responsibilities generated insights into how they could have a positive impact on others.

When I was a camper, there wasn’t much responsibility, but as a CIT, we are not all the way counselors yet, so we still get the freedom of being a camper and some of the responsibility of being a counselor. It made me feel like I was doing more for the camp and helping it flow and doing more for the kids that come. This week was really moving for me because I’m a CIT and I got to meet a lot of new campers and a lot of old campers I had never spoken to. I got to really get insight on other people’s stories and other people’s experiences with cancer and see how that connects us. Our similar experiences bond us (teen).

The other CIT in this study, a bereaved teen, shared, “Being a CIT made me feel really special. Helping the younger campers made me feel better about myself. I was able to help others the same way the counselors used to help me.” One camper, who expressed looking forward to being a CIT, described learning to care more about others and taking on responsibilities beyond what they thought they were capable of.

I started talking to the younger campers more this year. I’m just overall a nicer person to people. I’m trying to be more caring. I tried to be more like a cabin mate who was always super friendly to everybody and is pretty much friends with everyone at camp. I learned that I can be more responsible than I thought (bereaved teen).

Participants spoke about learning new ways to deal more effectively with their circumstances from peers and adult mentors at camp. They described building on existing skills and learning how to deal with their feelings. This was evident in the following response:

I went from not liking it [cancer]. Well, you know, of course, I don’t like it. But I went from not really knowing about it to understanding what it is. I know what it does and how it impacts other siblings. I learned ways to deal with my feelings. I’ve met a bunch of friends that I can talk to if I need to, or they can talk to me if they need to (teen).

Personal growth was expressed through sharing experiences between bereaved and non-bereaved siblings. A pre-teen noted that learning from siblings who have lost their brother or sister changed their perspective and presented a unique understanding about coping with death.

I learned that some of their siblings had actually died. I learned that when their sibling died, rather than forgetting them and just feeling bad every time it was brought up, it was more like letting go. So death is not putting someone behind and leaving them behind, but more like letting go and you can still remember them and they’re always with you. So, I learned a lot of good wisdom from them [bereaved siblings].

Identity

Identity refers to one’s uniqueness or qualities that distinguish one person from another. Participants described feeling empowered to have their own identity at camp. More specifically, they described camp experiences as fostering their own individuality apart from having a sibling with cancer. For example:

At camp, I learned not to always think about cancer but also things in daily life. How just like at school with friends, we learn about their lives. We put aside being a sibling of someone with cancer. We talk about what else makes us similar and just find other things about each other. Yes, we do have a sibling with cancer, but we can relate in other ways too (pre-teen).

Several siblings appreciated fitting in, because camp was inclusive and they experienced opportunities to just be themselves. For example, a teen said, “Everyone at camp made me feel happy, because I was able to be me. I like how inclusive it [sibling camp] is. It is okay to be your true self here. Like, it is okay to be me.” This notion of feeling comfortable being themselves was further expressed by a sibling who shared their experience, “I liked how everyone was really nice to you and they were able to share their stories, but it wasn’t forced, you could be yourself and talk about anything” (pre-teen).

Freedom to Have Fun and Relax

For the purpose of this study, freedom to have fun and relax is described as any experience that promotes positive feelings and/or diverts the sibling from the stresses associated with the cancer experience. Overall, participants reported that camp activities, such as interactions with cabin mates, classes, and attention from caring adults made them feel good about themselves and gave them a sense of freedom to forget the struggles of being a sibling of a child with cancer and just have fun. The essence of positive experiences that fostered a sense of freedom to have fun, relax, and escape from stress were conveyed by most of the participants. For example:

Sibling camp is an insanely fun week where everyone is going through the same thing you’ve gone through. It’s basically just paradise where you don’t have to think about it [cancer]. You can play sports, make some new friends, eat some food, make s’mores, sing, dance, go fishing, go canoeing. Just basically do anything that is available there, but without thinking about what’s happening at home. It’s just a week to let it all go. It’s awesome (teen).

Several siblings described camp as stress free and compared it to the struggles at home. One sibling appreciated camp as a safe space to have fun and compared it to feeling ill at ease at home. “Sometimes at home, I feel self-conscious, but camp is a safe space just to be able to mess around and play sports and just have fun for a week” (bereaved teen). This was also noted by another bereaved teen, “I like the free time we get because it is relaxing. At home and school I have anxiety, so it’s just nice to relax and not think about anything that’s going on in my life.”

Being able to take a break from the stressors associated with childhood cancer was further emphasized and associated with having fun and feeling special. A bereaved teen said, “I found camp really helpful because I needed a break from real life, and I have fun at camp and everyone there makes me feel important.” One of the younger campers indicated that being at camp helped them not think about cancer, saying, “Camp was fun. I got to spend time with my friends and that made me not think about cancer for most of the week” (school-aged).

Discussion

The purpose of this qualitative study was to explore the lived experience of siblings of children with cancer who attended a peer support camp. Prior to this study, there had been no systematic effort to collect participants’ perspectives about this particular camp. Overall, the findings corroborate the results reported in Author (2005) and Roberson (2010) indicating that the peer support camp had a positive influence on QoL and social support. In addition, this study offers novel findings related to personal growth, identity, and program components that facilitated opportunities to express feelings (FCT and B chat). Although there were two distinct subgroups (non-bereaved and bereaved), there were no differences in perceptions of the peer support camp experience noted between non-bereaved and bereaved siblings.

Of the four themes that emerged in this study, the most prevalent was social connection. All siblings in this sample perceived that connecting with others who understood what they were going through was meaningful and instrumental in developing close and positive relationships. This aligns with a recent systematic review (Long et al., 2018), which indicated that siblings of children with cancer, including bereaved siblings, perceived a need for social connection with others who have shared their life experiences and understand how they feel. This finding also corroborates the results noted in Author (2005) and Roberson (2010) indicating that siblings perceived social support from peers and counselors with shared life experiences as meaningful. A few studies have reported outcomes associated with social connection related to peer support camps for siblings of children with cancer (Author, 2004, 2005; Sidhu et al., 2006). However, less present in the literature are the perceptions that siblings hold about how their camp experiences contributing to the outcomes. This study expands on the current literature by providing more detailed information about the siblings’ perceptions of social connection experienced at camp. Of particular note are the three distinct but related subthemes that emerged as part of social connection.

Support/feeling of belonging was perceived by all participants in this study as meaningful in the context of how peers, counselors, and adults at camp understood and related to what they were going through and helped them to feel accepted and less alone. Siblings in this study attributed the unique bond and strong sense of community they shared to the acceptance and recognition they experienced while participating in FCT and B chat. Their statements about the value of this camp component illuminate one way in which siblings of children with cancer who attend a peer support camp experience a feeling of belonging and community identified in prior studies (Author, 2005; Roberson, 2010).

This finding corroborates prior qualitative studies that show siblings value support from peers and counselors who have shared life circumstances. These social connections contributed to positive emotions as well as opportunities to learn from others (Author, 2005; Roberson, 2010). Some participants compared positive support experiences (e.g., empathy and encouragement) at camp with negative experiences at school. This greater understanding of sibling perceptions (e.g., experiencing pity from peers at school) adds depth to the existing literature regarding the need for siblings of children with cancer to receive support from others with shared life experiences (Buchbinder et al., 2011; Houtzager et al., 2004; Long et al., 2018; Nolbris & Hellström, 2005). This study’s finding also supports the existing literature that recognizes the need for siblings to connect with others who can relate to their experiences of loss and grief (Franklin et al., 2018; Nolbris et al., 2014; Zegaczewski et al., 2016). Consistent with the perceptions of siblings in this sample, research pertaining to peer support group models describes a sense of community, flexibility in the kind of support provided (e.g., activities and discussions), and an emotionally safe environment (Heisler, 2007; Journot-Reverbel et al., 2017; Lewis et al., 2016; Mead & MacNeil, 2006; Repper & Carter, 2011; Turner, 1999).

Mentorship, as a subtheme of social connection, centered on learning from counselors and adult mentors who shared personal experiences and validation of feelings. Notably, some participants perceived counselors and adults as role models. Mentorship, although not explicitly studied in relation to peer support camps for siblings of children with cancer, has been extensively studied in the literature for at risk populations such as youth in foster care (Diehl et al., 2011; Osterling & Hinest, 2006; Southwick et al., 2006; Williams, 2011). The literature endorses mentoring relationships as contributing to resilience (Osterling & Hinest, 2006; Southwick et al., 2006). The preliminary finding in this study regarding the siblings’ perceptions and experiences related to mentorship supports the need for further inquiry to better understand these phenomena and their potential contribution to positive outcomes.

The ability to express feelings was the final subtheme related to social connection. Siblings described sharing feelings with others who understood and did not judge them. Some described being able to open up and express feelings during FCT and B chat and learning that other siblings felt the same way. These perceptions corroborate research indicating that siblings of children with cancer often feel excluded and want their grief to be recognized (Lövgren et al., 2016). They also support a prior study acknowledging siblings’ perceptions that camp was a place they could openly express their feelings (Author, 2005), have their feelings validated, and have their grief recognized (Author, 2004, 2005; Long et al., 2018; Samson et al., 2016). This study adds to this base of knowledge by exploring the FCT and B chat experiences. The experience described by siblings in this study as empowering them to openly express their feelings is similar to the broader peer support group literature, which identifies authentic understanding, expressing feelings, and receiving validation as instrumental to fostering emotional health (Groh et al., 2008; Mead & MacNeil, 2006; Pfeiffer et al., 2011; Repper & Carter, 2011). Collectively, the data suggest that the shared experience of having a sibling with cancer and participation in a peer support camp were perceived as contributing to overall social connection manifested in support/feeling of belonging, mentorship, and expressing feelings.

A second theme that emerged in the lived experiences of the siblings in this study was personal growth, which focused on learning life lessons, taking on new responsibilities, and developing new coping skills. Siblings perceived that they learned to care more about others and were able to assume responsibilities beyond what they thought they could. Both CITs in this study expressed personal growth in relation to taking on new responsibilities and gaining insights into how to help others. This perception of personal growth specific to this population has not been studied. Previous research has explored related constructs such as QoL (Author, 2004, 2005) and self-esteem (Author, 2004; Sidhu et al., 2006). However, this novel finding provides an increased understanding of siblings’ perceptions of personal growth experienced at this camp.

Participants described opportunities during facilitated chats and conversations with peer mentors to build on existing coping skills and learn how to deal with difficult feelings, including comfort in knowing they could share ideas and coping strategies beyond the week of camp. The existing literature describes a range of positive coping strategies including open opportunities to talk about and validate feelings in a safe environment, and maintaining hope (Houtzager et al., 2004; Sidhu et al., 2006). In this study, siblings sought opportunities to learn new ways to cope with the challenges associated with being a sibling of a child with cancer from peers, counselors, and adult mentors. This finding is also supported by the broader literature relevant to healthy coping, which is described as an active and intentional process in response to stressful situations that involves problem solving, information seeking, and accessing supportive resources (Seiffge-Krenke et al., 2009; Skinner & Zimmer-Gembeck, 2016).

Identity is a third theme that emerged in this study. This is an important result based on the literature describing siblings of children with cancer as feeling invisible (Alderfer et al., 2015; Franklin et al., 2018; Long et al., 2018). The perceptions shared by siblings in this sample describing how experiences that made them feel special and the center of attention add to the value of the peer support camp in contributing to an enhanced sense of identity. This finding is supported by existing adolescent development literature, which indicates that supportive environments and discussions with peers help youth create or adapt their identity by adopting values and norms of the peer group and rejecting others (Pugh & Hart, 1999; Ragelienė, 2016). To our knowledge this is a new finding specific to peer support camps for siblings of children with cancer warranting further study. Additional research is needed to better understand how these feelings of uniqueness beyond being a sibling of a child with cancer evolved and how best to facilitate positive outcomes.

The final theme that emerged in the data was freedom to have fun and relax. Participants reported that camp recreational activities were fun, relaxing and promoted positive feelings. They also helped to divert them from the challenges of childhood cancer. They could relax and have fun in a stress-free environment. These perceptions and experiences coincide with results from other studies specific to peer support camps for siblings of children with cancer (Author, 2004, 2005; Sidhu et al., 2006). The participant’s perceived value of these recreational activities in a safe space reinforces the conceptual approach of the peer support camp that balances traditional camp activities with elements of peer support for siblings of children with cancer (Author, 2004, 2005; Hancock, 2011; Sidhu et al., 2006).

The extensive foundational knowledge about sibling relationships and their contribution to social and emotional development is substantiated by the expressed perceptions and experiences shared by siblings in this study. The themes that emerged uphold the profound impact childhood cancer has on those relationships, social/emotional development, and well-being (Buist et al., 2013; Dunn, 2015; McHale et al., 2012; Whiteman et al., 2011).

Limitations

This study must be considered within the scope of some important limitations. Interviews were conducted retrospectively and took longer than expected to coordinate due to participant scheduling conflicts. Scheduling interviews with siblings of children actively on treatment was difficult due to the family’s need to prioritize coordinating medical care for the child with cancer. The time gap between camp and phone interviews created the possibility of recall bias. In addition, some of the siblings in this study participated in other family camp weekends. This potentially impacted their memory and perspective related to their experiences at this peer support camp.

The small-scale qualitative study of siblings who attended the peer support camp is not intended to be representative of all siblings of children with cancer or representative of all peer support camps. It is important to note that siblings of children with cancer not included in this study may have different experiences.

This study did not address race, ethnicity, or socioeconomic status (SES). Parents were asked to complete a pre-study demographic questionnaire that included this information. However, the majority did not respond and provided feedback that they were not comfortable sharing the information even though it would be kept confidential and only be used in aggregate form. The non-profit organization funding the camp has an inclusive mission and the camp is free for all participants.

Another potential limitation is that the interviewers were familiar with the camp participants, which created the potential for social desirability response bias. In addition to the mitigating data collection steps described above, the PI and RAs attempted to address this concern by stressing that the common goal was to improve the peer camp experience and that honest comments were welcome.

There also was possible bias because the PI and RAs conducting the interviews were longstanding members of the camp leadership team. Although eliminating all biases was not feasible, the PI and RAs instituted a variety of control measures to mitigate their impact. These included a process of mind map bracketing and reflexive journaling (Tufford & Newman, 2012). The PI also engaged in frequent discussions with individuals not involved in the camp or research throughout the study in an effort to surface preconceptions, enable a deeper level of engagement, and optimize the rigor of the study. To further reduce potential bias and enhance the credibility and trustworthiness of data analysis, a second researcher who was not familiar with the camp independently coded the data. The involvement of three different interviewers may have led to inconsistencies in the interviews, although they completed in-depth training, followed a protocol, and used a common script to ensure consistency. The goal was to maintain consistency while allowing for flexible child-friendly prompting and age-appropriate social engagement to elicit honest and comprehensive responses and enhance the overall rigor of the data collection process (Eastham & Kaley, 2020).

Finally, some questions may appear to be suggestive or leading. The questionnaire was designed in corroboration with members of the non-profit organization and peer support camp subject matter experts. Some of the questions related to programmatic components were intentionally framed to elicit the voices of siblings related to their peer support camp experiences.

Implications for Future Research and Practice

Our results provide preliminary insights into the peer support camp experiences that siblings of children with cancer perceive as meaningful and offers areas for further investigation. Additional research is needed to better understand the perceived needs and benefits of peer support camp experiences of siblings in all phases of the cancer journey (newly diagnosed, on treatment, off treatment, or bereaved). Future research should include mixed method studies exploring specific elements and program components of such camps that lead to positive outcomes.

Our analysis shows that siblings of children with cancer need social connection with individuals who have shared life experiences (Alderfer et al., 2010; Franklin et al., 2018; Gerhardt et al., 2015). The findings in this study illustrate a promising area in which healthcare providers and children’s oncology camp professionals can strengthen or establish new peer support camp experiences. These include a CIT leadership development program, recruiting counselors who share the siblings’ life experience, peer support through purposeful cabin assignments, and structured FCT experiences including a separate bereaved chat to address this identified need for this underserved population. Although the results of this study suggest that siblings of children with cancer perceived positive outcomes associated with the peer support camp experience, additional research is needed to inform program development and best practices.

Conclusion

This study is a contribution to the scant body of research exploring the perspectives and experiences of siblings of children with cancer who attended a peer support camp. Most notably, the evidence and findings inform the pediatric oncology community about peer support camp experiences from the perspectives of siblings of children with cancer, perspectives that are often overlooked. The social connection with other siblings who have shared the life experience and participation in the peer support camp exclusively for them were predominant themes. This perspective resonated in all interviews regardless of age, gender, number of times they attended the camp, and non-bereaved and bereaved phase of the cancer journey. Additional personal experiences and perceptions focused on personal growth, identity, and freedom to have fun and relax. These findings suggest that peer support camps offer a viable means to address the unique psychosocial needs of this underserved population.

Supplemental Material

sj-docx-1-qhr-10.1177_10497323221095478 – Supplemental material for The Lived Experience of Siblings of Children With Cancer Who Attended a Peer Support Camp in the United States

Supplemental material, sj-docx-1-qhr-10.1177_10497323221095478 for The Lived Experience of Siblings of Children With Cancer Who Attended a Peer Support Camp in the United States by Donna Gregory, Marieke Van Puymbroeck, Brandi Crowe, Barry Garst and Michael Amylon in Qualitative Health Research

Supplemental Material

sj-docx-2-qhr-10.1177_10497323221095478 – Supplemental material for The Lived Experience of Siblings of Children With Cancer Who Attended a Peer Support Camp in the United States

Supplemental material, sj-docx-2-qhr-10.1177_10497323221095478 for The Lived Experience of Siblings of Children With Cancer Who Attended a Peer Support Camp in the United States by Donna Gregory, Marieke Van Puymbroeck, Brandi Crowe, Barry Garst and Michael Amylon in Qualitative Health Research

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Donna Gregory

Supplemental Material

Supplemental material for this article is available online.

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