Abstract
Keywords
Introduction
Research finds that children with cancer can experience negative outcomes with peers, including isolation (Katz et al., 2010; Pendley et al., 1997), disengagement (Fladeboe et al., 2021; Katz et al., 2010), and rejection (Helms et al., 2016; Oeffinger et al., 2006). For example, Katz et al. (2010) observed children with pediatric cancer and their peers while they participated in free play with their best friend and found that children with cancer were less engaged with their best friend during play than their healthy peers. Examining the outcomes of childhood cancer on peer relationships is important because negative peer relationships are related to poorer academic attendance (Helms et al., 2016; Vance & Eiser, 2002) and psychosocial development (Helms et al., 2016). Furthermore, these impacts can last into adulthood. Mackie et al. (2000) found that adult survivors of childhood cancer have shorter and less intimate relationships with peers than others.
With advances in treatment options, the survivor rates of childhood cancer have increased (Siegel et al., 2019). As a result, recent research has begun to examine the experiences of those in survivorship from pediatric cancer (Molinaro & Fletcher, 2017, 2020). A review of the literature shows a few studies that have examined this through memories of adult survivors of childhood cancer (Foster et al., 2017; Hinton et al., 2022; Molinaro & Fletcher, 2017, 2018). These studies use retrospective designs to explore the memories of adult survivors of childhood cancer as a way to provide insight into the experience of childhood cancer and its impact on life in survivorship. Because of the evidence of the impact of childhood cancer on peer relationships, one area of possible further exploration is adult survivors of childhood cancer's memories of peer experiences.
In Molinaro and Fletcher (2017), 10 young adults (ages 21–28) who were survivors of pediatric cancer were interviewed about the impact of cancer on their lives. One of the themes from participants’ responses was “Not everyone was nice” (p. 164). Participants had specific memories about peers who were not nice. Participants spoke about being bullied (e.g., hair pulling, asking questions) and being isolated as peers would avoid interactions with them (Molinaro & Fletcher, 2017).
Hinton et al. (2022) and Prouty et al. (2006) surveyed adult survivors of childhood cancer and found memories emphasized the importance of support from friends and family. Support from peers specifically mentioned cards, pictures, and letters from classmates (Prouty et al., 2006). Another study found survivors to discuss friends as a valuable tool for support because of their ability to be a distraction from cancer treatment (Foster et al., 2017). On the other hand, survivors in that study also noted that some friends stopped being available or that it was frustrating to have to support friends who did not know how to support them as a cancer patient (Foster et al., 2017).
Studies have shown us that when children experience cancer their relationship with peers can be negatively impacted (Fladeboe et al., 2021; Helms et al., 2016; Katz et al., 2010). More recent research that examines the memories of adult survivors of childhood cancer have highlighted the value of support from friends during childhood cancer and experiences of peer rejection (Foster et al., 2017; Hinton et al., 2022; Molinaro & Fletcher, 2017; Prouty et al., 2006). The purpose of this study is to further examine how adult survivors of childhood cancer remember their peers during their childhood cancer. For the purpose of this study, childhood is considered from birth to 18. Specifically, this study examined the following research question: What are survivors’ memories of their experiences with peers during their childhood cancer?
Method
This study used a survey design to explore adults’ memories of childhood cancer. Participants responded to open-ended questions, and these open-ended responses were then coded using thematic analysis.
Procedure
After Institution Review Board approval was received, participants of this study were recruited using Amazon Mechanical Turk (MTurk). When potential survey respondents visited MTurk a description of the study and an electronic consent form were provided. In order to be eligible for participation, individuals had to meet the following inclusion criteria: (a) born and raised in the United States, (b) between the ages of 18 and 40 years, and (c) cancer-free for at least 5 years. Those individuals who were interested and self-identified as meeting the inclusion criteria provided electronic consent. The participants completed background and demographic questions as well as a survey about their memories of childhood cancer. Anonymity was ensured, as no identifying information was obtained. The survey took around 30 min to complete, and individuals were paid 50 cents in the United States currency for participating.
The survey participants completed included 60 questions (30 close-ended and 30 open-ended) about their memories during their childhood cancer related to caregivers, peers, siblings, diagnosis, treatment, and survivorship. Two Certified Child Life Specialists (CCLSs), who are also the primary and secondary authors of this study, created the survey using their expertise, including over 20 years of combined research and psychosocial care experience. The survey questions were developed using this expertise as well as the research from psychosocial literature about childhood cancer. For example, the question “Did your friends treat you differently during your cancer?” was one question included about peers. The authors’ experience as CCLSs provided knowledge that children with cancer often report feeling different from peers. Furthermore, research finds evidence that childhood cancer patients experience changes in peer relationships including bullying (Collins et al., 2019; Lahteenmaki et al., 2002) and peer isolation (Vance & Eiser, 2002).
This study was part of the primary author's thesis that explored the memories of adult survivors of childhood cancer about a range of topics including caregivers, siblings, diagnosis, coping, treatment, and survivorship (Hinton, 2018). To examine the research question of this study (i.e., What are survivors’ memories of their experiences with peers during childhood cancer?), the authors explored only those questions related to peers including: “Please explain why you think your peers did or did not understand your cancer?”, What kind of support did your peers give you?”, “Discuss one memory about your peers during your cancer experience?”, and “How did your peers treat you differently during your cancer experience?”
Data Analysis
Descriptive statistics were completed for demographic information, including frequencies and percentages using SPSS Version 25. Inductive thematic analysis was used to code responses to the open-ended survey questions. Thematic analysis was used because it allowed for an exploration of common themes to develop from the data (Braun & Clarke, 2012). The authors independently read through the data to become familiar with it. Then, individually, each author created initial codes. The authors then met to review the codes and define themes. The authors coded the data a second time using the themes and then met to discuss any discrepancies and come to 100% agreement. To examine interrater reliability, a third person blind to the purpose of the study, coded the data using the identified themes, and inter-rater reliability was examined with the first author and the blind reviewer. Inter-rater reliability was found to be high at 91%.
Reflexivity Statement
The first author of this study is an adult survivor of childhood cancer. Therefore, it is important to note the potential influence of subjectivity. To address this, the first author engaged in reflexive practices, such as discussions with their mentor. Both authors are CCLSs who value psychosocial care of children experiencing healthcare encounters. These perspectives were considered throughout each phase of the study.
Results
Participants
A total of 125 people were recruited through MTurk. The dataset was cleaned by removing participants who did not meet inclusion criteria, who completed the survey in 2 min or less, and who did not answer narrative responses. After dataset cleaning, a sample size of 27 was created.
In total, 15 male and 12 female completed the survey. Participants (n = 27) ranged in age from 20 to 39 years (M = 28, SD = 4.88). The participants’ age of diagnosis ranged from 19 months to 17 years (M = 9.67, SD = 4.46). About 77.8% of participants were White, 11% Black, 3.7% Asian American, 3.7% American Indian, and 3.7% of participants self-reported as other. Diagnoses of participants included leukemia (59.3%), lymphoma (22.2%), brain tumors (7.4%), Wilms’ tumor (7.4%), and 3.7% had other cancers, such as hepatoblastoma and skin cancer. See Table 1 for further demographic information.
Demographic Information
Themes
Five themes emerged from the participants’ responses about their memories of peers: age, perceptions of cancer, acts of kindness, peer responses, and limited peer engagement.
Age
Participants frequently discussed age as a factor when thinking about peer understanding of and support during cancer. For example, one participant notes, “They were the same age as me, and they didn’t understand why I couldn’t play due to my immunocompromised state” (Participant 17; diagnosed [Dx} at age 6). When age was mentioned, it was almost always discussed as a reason participant's peers may have had a difficult time understanding what cancer was. For example, another participant said, “They were only 10 years old; how could they comprehend it?” (Participant 25, Dx at age 10).
Perceptions of Cancer
Participants also talked about peers differing perceptions of cancer. Some had misconceptions about cancer. For example, one participant remembered that some of his/her peers “thought it was contagious” (Participant 6, Dx at age 6). Other participants noted that many of their peers associated cancer with death. One participant wrote, “All of my friends were really sad; they knew people who had cancer and died, so they were scared” (Participant 17, Dx at age 6). Some participants talked about their peers only understanding certain aspects of cancer and/or not understanding cancer fully. For example, one person said, “they didn’t understand how long it could last” (Participant 1, Dx at age 16).
Acts of Kindness
Another theme that was discussed often was participants’ memories of the kind things their peers did for them when they were diagnosed with cancer and/or receiving treatment for cancer. Many participants reminisced on their peers visiting them while they were in the hospital saying things like, “They would visit the hospital sometimes and play video games with me in my hospital room” (Participant 1, Dx at age 16). Others remembered receiving cards are gifts. For example, one participant described one memory, “My swim team sent me a poster with well wished on it; it was very touching. They were warm and supportive” (Participant 13, Dx at age 14). While many participants appreciated these gestures, some participants felt uncomfortable due to these situations. One participant wrote, “I had someone post a tribute to me on Facebook, but it just made me uncomfortable to get so much attention” (Participant 10, Dx at age 15).
Peer Responses
A fourth theme that arose was peers’ differing responses to the participant with cancer. These responses ranged from very positive to very negative. For example, one participant spoke highly of her peers stating, “I had a lot of support from my classmates at the time of diagnosis” (Participant 22, Dx at age 10). On the other hand, one participant recalled a difficult memory, “My ex-girlfriend literally dumped me like a week after being diagnosed. I was so heartbroken, plus now I had cancer. She left me for someone on the football team who was healthy” (Participant 7; Dx at age 17). Others spoke about how their peers, while trying to be kind, may have made things uncomfortable, “They felt uncomfortable around me, and it felt like they let me say and do anything” (Participant 3; Dx at age 15).
Limited Peer Engagement
Another theme that emerged was that participants noted experiencing limited opportunities for peer engagement when they were undergoing cancer treatment. For example, participants wrote things like “I was very sheltered, and I didn’t get to see my friends much” (Participant 25; Dx at age 10) and “I wasn’t really around others my age” (Participant 15; Dx at age 5).
Discussion
A childhood cancer diagnosis impacts many facets of a child's life, including their peer relationships. Previous research has shown both positive and negative impacts on peer relationships (Kim et al., 2018). Furthermore, these impacts can continue into adulthood (Howard et al., 2013; Kim et al., 2018). With the childhood cancer survivorship rate increasing, there is a need to continue to examine the experiences of childhood cancer through memories, including psychosocial issues like peer relationships. The purpose of this study was to better understand childhood cancer survivor's memories of peer experiences during cancer diagnosis and treatment. The findings suggest that peers of childhood cancer patients had different levels of understanding of cancer, different perceptions of cancer, and offered varying types of support, as well as some negative peer interactions.
One major finding of this study was that participants noted their peers did not understand their cancer diagnosis and/or treatment due to their age. This finding is likely related to idea that unless a child has been given information about cancer from a caregiver, they will lack knowledge of it (Varkula et al., 2010). Many adults avoid discussing topics such as cancer for fear of overwhelming children and may only introduce information about cancer when it directly impacts the child (Varkula et al., 2010). Furthermore, many people assume that children are unable to understand complex medical topics (Chesler et al., 1986; Varkula et al., 2010). The survivors of childhood cancer even note this in the current study. However, decades of research have shown that when provided developmentally appropriate education and explanations children are capable of understanding medical topics, such as a cancer diagnosis (Banks, 1990; Bibace & Walsh, 1980; Boles et al., 2020; Jaaniste et al., 2007).
Next, this study also found that when peers did have some familiarization with cancer there were differing perceptions of it. For example, peers often had misconceptions about the prognosis of their peer, the duration of cancer treatment, and the ways in which cancer can be acquired. This is concerning as lack of understanding by peer is related to social isolation (Paul et al., 2021) and can contribute to children with cancer being treated negatively by peers (Molinaro & Fletcher, 2017). For example, in a study that examined the experiences of childhood cancer survivors, one participant reflected on how their peers thought cancer was contagious and, as a result, stopped coming around after their diagnosis (Molinaro & Fletcher, 2017).
The lack of knowledge and varying perceptions of cancer suggest the need for peers to have education on cancer. Many healthcare teams have resources in place to assist in such needs. For example, CCLSs are members of the healthcare team who have training and expertise in child development and psychosocial services and are equipped to provide education on diagnoses and treatments to patients, families, and members of the community (Boles et al., 2020, Romito et al., 2021). According to Boles et al. (2020), CCLSs assess the development and psychosocial needs of those they are working with and plan an individualized plan for education (Boles et al., 2020). Education can be provided by developmentally appropriate information, play, medical play, or modeling. Education about diagnosis and treatment help children, even those as young as toddlerhood, better cope with healthcare experiences (Boles et al., 2020).
Advances in cancer treatment allow many children with cancer to return to their home lives and school at earlier rates than previous recommendations. Therefore, preparing children for social reintegration and/or the school reentry process is an imperative part of comprehensive psychosocial care. School reentry programs include providing diagnostic education, treatment education, and general education about a patient to the staff and peers/classmates in the school setting (Katz et al., 1988). This is done to enhance understanding and decrease misconceptions and fears about the patient and their diagnosis (Katz et al., 1988). School reentry education can be provided by a psychosocial professional, such as a CCLS. There are many benefits to these types of programs, such as peer's increased understanding of cancer and peer's increased comfortability of interacting with the child with cancer (Helms et al., 2016; Katz et al., 1988).
Another finding of this study is that survivors remembered the small acts of kindness that their peers did for them when they were diagnosed and throughout treatment. Similar to previous findings, some acts of kindness discussed included peers visiting the hospital to play or sending gifts and cards (Prouty et al., 2006). Acts of kindness are often viewed as one of the positive memories of surviving cancer (Griffiths et al., 2010) and opportunities to have a distraction from the cancer (Foster et al., 2017). In a recent study, Peterson et al. (2022) found that peer motivation helped offer hospitalized children with cancer emotional support. Peer motivation came in the form of classmates volunteering to act as an ambassador and help the child with cancer participate in physical activities. The children with cancer reported viewing this as a way to stay connected to peers and focus on something other than the hospital (Peterson et al., 2022).
Finally, this research also demonstrated that survivors lacked opportunities for social engagement during their cancer journey. Previous research has shown that kids with cancer feel isolated (Sawyer et al., 2021). These adult survivors still remember those feelings of isolation or experience continued social isolation, even after treatment has ended (Howard et al., 2013). Therefore, it is important for psychosocial providers to help decrease these feelings of isolation and promote social engagement during and after cancer treatment.
There are many avenues through which this can be accomplished. Within the hospital setting, psychosocial providers, such as CCLSs, can encourage patients to go to the playroom and interact with peers in the hospital and/or attend social and support groups that may be offered. For example, one study found that these support groups helped patients share their feelings about topics such as diagnosis, treatments, parents, and peer relationships (Heiney et al., 1988). Social media is another way through which patients can remain connected with their peers. Connecting with peers via social media increased feelings of connectivity and support, control during their cancer experience, and an increased acceptance of body image (Daniels et al., 2021). There are even some social media sites designed specifically for children with chronic illnesses, such as Upopolis. The aim of this program is to reduce social isolation of children going through healthcare experiences, such as cancer (Upopolis, 2023).
At many hospitals, there are opportunities for patients to remain socially engaged with others on a bigger scale, such as serving as a member of patient advisory councils or other hospital-wide councils in which a patient perspective is welcomed. Some hospitals also have programming for specific populations of patients. For example, many hospitals are implementing formal adolescent and young adult programs. These programs are designed to meet the needs of the unique population they serve (MD Anderson Cancer Center, 2023). In addition, there are also opportunities outside of the hospital setting, such as summer camps for specific patient populations that aim to connect peers. These summer camps have been shown to promote socialization with peers during the camp experience, as well as socialization that extends beyond the camp experience (Beckwitt, 2014). Furthermore, there are also national organizations, such as “Stupid Cancer” (Stupid Cancer, 2023) and “Teen Cancer America” (Teen Cancer America, 2023) that implement different types of social programming for children and young adults with cancer.
Limitations
Like all research, there are limitations to this study. For one, it utilized a retrospective design; therefore, findings may be impacted by reliability of participants’ memory. Next, the use of a survey limited the amount of information that was collected on the topic. Future studies should consider using interviews to allow for the topic to be explored more in depth. Most of the participants in the study were White; therefore, the generalizability of the findings may be limited, and future studies should include a more diverse sample. Finally, participants were recruited from MTurk which provides payment for the completion of a survey. The study design limited the ability to ensure the validity of participants meeting inclusion criteria.
Implications for Practice and Research
There are several implications for the findings of this study. For one, the adults of childhood cancer remembered their peers needed more information about their cancer. These findings emphasize the importance of education opportunities for peers of children with cancer, such as school reentry and telehealth education programs offered by psychosocial care providers, such as CCLSs. Future research is needed to examine the effectiveness of telehealth to help peers understand cancer and how such programs impact peer engagement. In addition, isolation and the importance of acts of kindness were reported by the adult survivors of childhood cancer. These findings suggest the need of the healthcare team to offer opportunities of social engagement for children with cancer, such as offering playroom group activities. In addition, future studies should examine if parents benefit from education on how to continue social development for their child with cancer. Finally, a future study should examine this topic but using a cross-sectional design with children currently being treated for cancer.
Conclusion
The current study finds that adult survivors of childhood cancer had several important memories about their experiences with peers during their cancer. They remember their peers were too young to understand and those that did have an awareness had a range of perceptions about cancer. They also remember feeling supported from acts of kindness and valuing opportunities to interact with peers. However, they reported feeling isolated with limited peer interaction during their childhood cancer. These findings provide information on what types of services may be needed from childhood cancer patients to support peer relationships. Interventions such as education to peers, peer support groups, and peer engagement activities offered by members of the healthcare team, such as CCLSs, may help children with cancer foster positive peer relationships.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
