The impact of a personal cancer diagnosis on adolescent and young adult cancer survivors’ social connectedness: A qualitative analysis

Abstract

Adolescent/young adult cancer survivors (AYACS) are diagnosed with cancer between 15 and 39 years of age. Improving AYACS’ survivorship quality is crucial—including improving social connectedness, a construct describing the quality, structure and function of social relationships. With better understanding of AYACS’ social connectedness, network-based interventions can be developed to foster social health. This study explored how a personal cancer diagnosis impacts AYACS’ social connectedness among 35 AYACS 15–25 years old. Three themes emerged through thematic analysis: (1) AYACS experience substantial heterogeneity related to social support needs; (2) AYACS leverage multiple relationships and resources when seeking support after a personal cancer diagnosis; (3) AYACS’ individual experiences were unique in that some noted positive changes, whereas others noted negative changes in relationships within social networks, specifically with peers. These findings create a foundation to develop social programming, foster peer relationships, and incorporate social science methods to aid intervention development to strengthen AYACS’ social connectedness.

Introduction

Adolescent and young adult cancer survivors (AYACS) are individuals diagnosed with cancer between 15 and 39 years of age, including those currently receiving cancer treatment as well as post-treatment survivors. Most AYACS survive cancer with a 5-year relative survival of 85% (National Cancer Institute, 2024)—thus improving survivorship quality, especially psychosocial health (encompassing emotional, mental, and social health) is crucial (Coccia et al., 2018). A personal cancer diagnosis can significantly disrupt AYACS’ typical socialization trajectory that normally occurs during adolescence and young adulthood (Warner et al., 2016). Poor psychosocial health can have significant downstream effects on AYACS’ achievement of professional and relational life goals (Vetsch et al., 2018; Kirchhoff et al., 2012; Solar and Irwin, 2010). Furthermore, similar to peers without cancer, AYACS engage in risky health-related behaviors (e.g., substance misuse, unprotected sex, physical inactivity) which can impact their achievement of life goals (Caru et al., 2022; Chardon et al., 2021; McGrady et al., 2021).

An important aspect of social health is social connectedness, a construct which describes the quality, structure and function of one’s social relationships (Holt-Lunstad, 2022). Social connectedness is associated with improved overall health, including mortality reduction (Becofsky et al., 2015). AYACS themselves, along with leading oncology organizations, prioritize social connectedness, which is considered a social determinant of health (Holt-Lunstad, 2022, Healthy People 2030, n.d.). Social connectedness can be explored qualitatively by evaluating social connections with members of a person’s social network, including attributes and functions of these connections and members, including social support needs. Understanding AYACS’ social connectedness, including their social support needs, may lead to the development of network-based interventions to enhance their social connectedness and ultimately their social health, which can positively impact life goal achievement and positive health-related behaviors. However, few studies have qualitatively evaluated AYACS’ social connectedness (Husson et al., 2017; Huang et al., 2018).

This study and the data interpretation were grounded in a conceptual model of social connectedness, drawing from several social science theories and constructs (Figure 1). One construct was the Network Episode Model by Pescosolido (1991), which posits health-related behaviors are influenced by one’s social networks. The second was the World Health Organization’s social determinants of health model, which describes how a person’s social cohesion and social capital (i.e., benefits a person receives c (Duh-Leong et al., 2021)) are closely related to other social determinants of health (e.g., education, occupation, income)—all which influence health and productivity (Solar and Irwin, 2010). Lastly, the conceptual model used social control theory, which describes how social integration can promote health (Umberson, 1987; Uchino, 2006). Thus, understanding how a personal cancer diagnosis impacts AYACS’ social connectedness could have significant impact in developing interventions to improve their health, health-related behaviors, and life goal achievement.

Figure 1.

Social connectedness conceptual model.

The research question we sought to explore was: How does a personal cancer diagnosis impact AYACS’ social connectedness? To answer this question, we interviewed 35 AYACS and used a thematic analysis (Thomas and Harden, 2008) to better understand their social experiences after a personal cancer diagnosis.

Methods

Study design and setting

This qualitative analysis was part of a larger study assessing AYACS’ psychosocial challenges. This was a single site study at a tertiary academic medical center.

Study population

Participants were 15–25 years old at the time of cancer diagnosis and still within 6 years of their cancer diagnosis. This younger AYACS subset was chosen to study individuals undergoing similar developmental and interpersonal challenges to each other (e.g., developing autonomy and personal values/identity, cultivating peer relationships, preparing to enter the workforce). Participants were receiving or had received oncologic care at the tertiary medical center. Additional inclusion criteria for participants (and consenting parents of participants <18 years old) included fluency in written and spoken English, and access to a computer or smartphone. Participants who were non-English-speaking were excluded due to available study team resources. Participants with relapsed cancer or with cognitive or physical inability to participate were excluded to ensure these characteristics would not confound exploration of factors impacting social connectedness.

Measurements

Two qualitative interviewers utilized a semi-structured interview guide (Online Appendix 1) to conduct individual participant interviews via videoconference. Interviews lasted 30–45 minutes which allowed sufficient time to discuss all topics in the interview guide, were audio-recorded, and transcribed verbatim by a professional transcription service. Qualitative data related to social connectedness (corresponding to the code “Relationships and Support”) are presented in this article.

See Online Appendix 2 for additional information on COREQ reporting guidelines and the codebook relevant to social connectedness.

Data collection

Data collection occurred from Winter 2021 to Summer 2022, with remote recruitment conducted from start of study until early 2022 when COVID-19 precautions were lifted and in-person recruitment could be conducted. Participants were recruited through review of the institutional cancer registry, divisional cancer database, electronic medical records, and provider clinic templates. Recruitment was stratified to include participants who represented varied ages at time of cancer diagnosis (i.e., 15–21 years old or 22–25 years old), and cancer treatment phases (i.e., whether participants were receiving or had completed cancer treatment).

Sample size considerations

Based on prior work evaluating social well-being among a smaller AYACS subset (Rao et al., 2023), we estimated data saturation to be achieved after approximately 30 interviews, accounting for age and treatment phase. We had a contingency plan to recruit additional participants if saturation was not achieved.

Data analysis

Thematic analysis was used to analyze data using a phenomenological approach to explore social connectedness and how a personal cancer diagnosis impacted AYACS’ social connectedness. A phenomenological approach, which seeks to understand a phenomenon by exploring it from the perspective of those who experienced it (Teherani et al., 2015), avoids using preconceived categories and is appropriate to use when literature on a topic is limited (Hsieh and Shannon, 2005). Audio recordings were transcribed by a protected health information-approved transcription service. MAXQDA software (VERBI Software 2021) was used to organize analyses. Study team members with qualitative research experience reviewed approximately 10%–20% of the entire dataset to inductively create preliminary categories, codes, and sub-codes that described the data. A preliminary codebook for the broad category “Relationships and Support” and its related codes was constructed and used to code five transcripts after which discrepant codes were adjudicated by group discussion to create a final codebook with codes, definitions and exemplars. The two analysts then coded the entire dataset using the constant comparison method (Glaser, 1965) which involved coding transcripts in batches and meeting for calibration every 10 transcripts. To maintain coding rigor, inter-rater reliability between the two coders was calculated and coding reconciled at each calibration timepoint and cumulatively to ensure the intraclass coefficient was greater than 0.7 (Creswell and Creswell, 2017). After coding, the two analysts developed initial themes, which the primary author further detailed. The full research team reviewed coding patterns to agree on final themes. While the same analytic process was applied to the entire dataset, themes related to social connectedness (corresponding to code “Relationships and Support”) are presented in this article. Quotes were edited minimally for clarity and brevity. We examined the consistency of themes across our recruitment strata (i.e., age 15–21 vs 22–25 and receiving vs completed treatment). Online Appendix 2 includes COREQ reporting guidelines and the codebook relevant to social connectedness. Themes and quotes are described in the “Results” section, and interpretation of results are described in the “Discussion” section.

Ethical issues

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the study site’s Institutional Review Board which considered the present study to be exempt research. The research team reviewed the summary explanation of research with the participants. After review, the participant (or participant’s parent/guardian) provided verbal consent prior to any study activities occurring. Before interviews were conducted, participants were recorded verifying that they reviewed the summary explanation of research and agreed to be recorded.

Results

Demographics

Seventy-six participants were approached and 41 enrolled. Six withdrew before study data were collected. Withdrawal reasons included logistics, and being lost to follow-up prior to the study visit. Thus, data were collected from 35 participants (Table 1). Quotes were analyzed from 34 participants given one participant’s interview audio recording was unintentionally not recorded due to technical difficulties. About half of participants were male. Most participants were White and not Hispanic/Latino. Leukemias and lymphomas represented the greatest proportion of cancer diagnoses. Most participants (63%) were post-treatment survivors. Most (about 60%) were enrolled in school. About 57% were employed (part-time or full-time).

Table 1.

Demographics.

	(N = 35)
Age at interview (years)
Mean (SD)	22.5 (3.92)
Median	22.7
Range	16.4–29.1
Identified gender
Female	17 (48.6%)
Male	18 (51.4%)
Race
Asian/Pacific Islander	2 (5.7%)
Black/African American	2 (5.7%)
Hispanic/Latino	1 (2.9%)
Native American	1 (2.9%)
White	29 (82.8%)
Ethnicity
Hispanic/Latino	1 (2.9%)
Not Hispanic/Latino	34 (97.1%)
Stratification
15–21 years, receiving treatment	10 (28.6%)
22–25 years, receiving treatment	3 (8.6%)
15–21 years, completed treatment	12 (34.2%)
22–25 years, completed treatment	10 (28.6%)
Cancer diagnosis
Acute lymphoblastic leukemia	9
Acute promyelocytic leukemia	1
Mixed phenotypic acute leukemia	1
Chronic myeloid leukemia	1
Hodgkin lymphoma*	13
Peripheral T cell lymphoma	1
Adrenocortical carcinoma	1
Breast cancer	2
Nasopharyngeal carcinoma	1
Ewing sarcoma	1
Soft tissue sarcoma (angiosarcoma)	1
Juvenile pilocytic astrocytoma	1
Malignant mixed germ cell tumor	1
Testicular cancer	1
Education
Enrolled in high school	8 (22.9%)
Enrolled in college	10 (28.6%)
Enrolled in technical/professional school	1 (2.9%)
Enrolled in graduate school	2 (5.7%)
Not enrolled-completed high school	4 (11.4%)
Not enrolled-completed some college	1 (2.9%)
Not enrolled-completed college	8 (22.9%)
Not enrolled-completed technical/professional school	1 (2.9%)
Employment
Not currently employed	15 (42.9%)
Currently employed full-time	12 (34.3%)
Currently employed part-time	8 (22.9%)
Who do you live with? (check all that apply)
Significant other	6 (17.1%)
Siblings	3 (8.6%)
Parents	13 (37.1%)
Parents and significant other	2 (5.7%)
Parents and siblings	7 (20.0%)
Other (lives alone, declined response, lives with other family members)	4 (11.4%)

^*One participant was diagnosed with Hodgkin lymphoma at age 24, and 2 years later was diagnosed with chronic myeloid leukemia.

Themes

Three themes related to how a personal cancer diagnosis impacts AYACS’ social connectedness emerged: (1) AYACS experience substantial heterogeneity related to social support needs; (2) AYACS leverage multiple relationships and resources when seeking support after a personal cancer diagnosis; (3) AYACS’ individual experiences were unique in that some noted positive changes, whereas others noted negative changes in relationships within social networks, specifically with peers. Online Appendix 3 lists additional supporting quotes for the three themes.

Theme 1: AYACS experience substantial heterogeneity related to social support needs.

Overall, participants reported complex, varied social support needs. Some participants desired and appreciated connections with others after a personal cancer diagnosis, including close and distant connections. Participants noted the importance of social connections, and how these connections helped them cope with the stress of illness.

One participant noted needs for their age demographic may be different compared to younger patients:

The most important thing for me was just having someone to talk to. That’s pretty much all I needed. . . I would imagine littler kids might’ve needed like art or music to cope with that. But I personally just needed someone to listen (Participant 22, 15–21 years old and receiving treatment, acute lymphoblastic leukemia)

While some participants appreciated others reaching out to them after their cancer diagnosis, several felt a need for space and consciously withdrew. This withdrawal occurred for some participants while undergoing cancer treatment. Sentiments about forming connections with others were complex and sometimes contradictory. For example, one commented on both wanting to talk to someone, and also explicitly withdrawing from those in their social network. Some desired privacy, specifically on social media (a prominent modality of forming connections among AYACS). One withdrew out of concern of overburdening those around them with the stress of their illness, and to focus on their recovery:

I kind of stopped texting my friends from—from either high school or from college just because I was trying to focus on me, and I didn’t want to be a burden, you know, to, you know, I don’t want to be a burden to them because they’re going through school and they have their own problems to deal with (Participant 31, 15–21 years old and receiving treatment, acute lymphoblastic leukemia)

Others desired authentic connections with people, and to not be treated differently because of their cancer diagnosis. One participant hid their cancer diagnosis in efforts to preserve their relationships:

For the longest time, I hid from [my friends] I had cancer, at least up to the point I lost my hair because I knew I couldn’t lie anymore. But I did it because I knew what the reaction was, and every time I saw them I knew the look. . . The look, like, I’m sorry. I don’t know, they just treated [me] differently. I don’t think they did it intentionally or [with] ill will. . . it was just the fact that I don’t think they really understand [how to] interact with me still (Participant 13, 15–21 years old and completed treatment, Hodgkin lymphoma)

Another agreed and did not want pity from those in their social network and did not want their cancer diagnosis to define them. For some, the hesitancy to form connections with others extended on social media. Social media was a positive way for some to connect with others after a cancer diagnosis, though some questioned people’s sincerity on social media platforms. One participant elaborated on how their cancer diagnosis made them re-evaluate relationships within their social network:

And then there were other people who just, like—so people who would post on Facebook about how strong you are, and you’re the strongest woman I’ve ever known. And—but I got maybe two texts from them in. . . the year and a half, 2 years I was in treatment (Participant 38, 22–25 years old and completed treatment, Hodgkin lymphoma)

Coding patterns were consistent across younger and older ages and cancer treatment phases.

Theme 2: AYACS leverage multiple relationships and resources when seeking support after a personal cancer diagnosis.

In general, participants drew on support from various members and organizations (educational, religious, philanthropic) within their social network across ages and cancer treatment phases. Connecting with fellow AYACS was divisive among participants, with some desiring and appreciating that connection, whereas others did not. Social media was a support for some, whereas others were wary of its authenticity.

Parents and siblings were consistently listed as a top source of support within participants’ social networks. One participant described how a personal cancer diagnosis made them prioritize their family. Another participant, however, mentioned discomfort in certain aspects of receiving support from family, namely sharing emotions and stressors with their parents. While some participants became disconnected with family, most noted deeper connection and relational growth with parents and siblings as a result of their cancer diagnosis and treatment:

I feel like my family has taken time to get together more than we used to. . . I knew we should get together and do stuff, just in case anything ever does happen, you know? (Participant 4, 15–21 years old and receiving treatment, chronic myeloid leukemia)

Peers were mentioned as critical sources of support after their cancer diagnosis. Similar to growth seen in family relationships, some reported strengthened friendships after a personal cancer diagnosis. Another participant appreciated how their peers proactively included them in activities after their cancer diagnosis, while also being aware of restrictions due to their immunosuppressed state. Participants appreciated peers being supportive after gaps in time, in addition to respecting their privacy. Relatedly, school was mentioned when participants discussed friendships. Not being in school made one participant re-evaluate friendships solely due to proximity. Related to school, teachers were mentioned as a source of support, sometimes through connections with peers, further highlighting the important role of educational institutions and its members in participants’ social networks. Several participants discussed how school fostered friendships, emphasizing the role of school in not only fostering professional achievement, but fostering normalcy and social development for AYACS. While the majority benefited from peer interactions, it is important to note that not being present in school also negatively impacted friendships:

[when asked how has experience with cancer treatment affected the participant] “ . . .it’s affecting me by keeping me out of school. . . the loss of friends because I can’t really be a part of much anymore. . . After I left school, [they] stopped, like, speaking with me, because I guess I wasn’t there to be a part of stuff, so a lot of them stopped reaching out” (Participant 17, 15–21 years and receiving treatment, nasopharyngeal carcinoma)

Others felt envious of peers who could continue with their lives, while they felt “stuck” due to cancer treatment:

And they’re, like, continuing on with their lives. And it’s hard—that’s like something that’s a challenge for me—is to watch them continue on while [I am] stuck in this, like, treatment area (Participant 29, 22–25 years old and receiving treatment, breast cancer)

Significant others were a source of support within participants’ social networks, with a significant proportion of participants living with their significant other (Table 1). Participants discussed how significant others would help with daily tasks like childcare, and provide emotional support:

And then I had to deal with. . . being a new mom and also having cancer. . . my husband was a rock star during that. Like, he did so much. And he—like, I was still going inpatient every couple of weeks (Participant 38, 22–25 years old and completed treatment, Hodgkin lymphoma)

Forming connections with fellow AYACS was a divisive topic. Some wished they were able to connect with others in a similar situation as them but were unable due to logistics. Some participants who were willing and able to form connections with other AYACS found these connections helpful and desired finding others going through a similar experience. One older participant mentioned a “disconnect” with patients of dissimilar age where they received oncology care, highlighting the importance to some participants of connecting with others of similar age going through a similar, shared experience:

When I first was going to the doctor in California, just to see if I—if I had cancer, it was people my age in the room, so it felt like, all right, cool. But when I came over here. . . it’s a bunch of. . . older people. . . I’m probably 25 years-plus younger than everybody in this room with me, and it felt like a disconnect. I don’t know. This don’t feel right (Participant 23, 22–25 years old and receiving treatment, Hodgkin lymphoma)

While connecting with fellow AYACS was desired and helpful for some, others declined engaging with fellow AYACS for varying reasons. One participant wanted to complete cancer treatment on their own. Others did not want to connect with fellow AYACS during the period of cancer treatment, yet felt more open to meeting other AYACS after cancer treatment completed:

They asked me about [connecting with other AYACS] while I was going to treatment, and my answer while I [was] going through treatment was absolutely not. . . I’m definitely more open to it now. I’m still not, I don’t think, 100% set on that. But I’m definitely more open to that idea now than I have been (Participant 19, 15–21 years old and completed treatment, acute lymphoblastic leukemia)

AYACS also received support from organizations. Religious organizations were a common source of support within AYACS’ social networks, as was spirituality:

Um, I was always so open to God. I—it’s not like out of nowhere I just started talking to, uh, my spiritual connections. Uh, but I will say it did intensify, you know, during this time because this is, like, you know, to me, at the time, it’s, you know? I don’t know what’s gonna happen (Participant 23, 22–25 years old and receiving treatment, Hodgkin lymphoma)

One participant mentioned a philanthropic organization as a support, as the organization was involved with their high school extracurricular activities in fundraising:

Because I would have just like [been] able to have like kind of a group together that I could come to, especially with [philanthropic organization], since I was going through it at the time. And like went through it. It was awfully nice to be able to have that (Participant 21, 15–21 years old and completed treatment, Hodgkin lymphoma)

Social media was frequently mentioned as a source of social support for some participants, highlighting the complex role social media plays in AYACS’ social networks. Social media networks led to valuable information and a sense of support from a social media community:

So this one [social media account]. . . she posts, like, memes that, like, go along with cancer treatment. . . it’s helpful things to bring to chemo (Participant 38, 22–25 years old and completed treatment, Hodgkin lymphoma)

Coding patterns were consistent across ages and cancer treatment phase.

Theme 3: AYACS’ individual experiences were unique in that some noted positive changes, whereas others noted negative changes in relationships within social networks, specifically with peers.

Some participants noted stronger connections within their social networks after a personal cancer diagnosis. For some, a personal cancer diagnosis made them re-prioritize and strengthen familial connections:

Uh, I would say [my relationship with my parents is] closer because I’m not shutting myself away as much. This kind of goes back to living a more fulfilling life or whatever. I don’t just waste time alone, and I try to spend time with my family, not just my parents, but my entire family in general, so siblings included (Participant 22, 15–21 years old and receiving treatment, acute lymphoblastic leukemia)

Some mentioned strong connections within their social networks preceding a personal cancer diagnosis and noted how these networks remained strong even after a cancer diagnosis:

And I feel like literally 90% of the people in my life did such a good job of [supporting me]. Like, I have such an amazing support system (Participant 9, 15–21 years old and completed treatment, acute lymphoblastic leukemia)

Some participants mentioned positive changes in relationships where they could act open and honestly:

And then my other friend that I’m, like much closer with now. . . she also, like, had something [going] on with her health. . . and so I think because she had that and I had this. . . we kind of related on, like, the grieving process of it. And we. . . didn’t feel like we were, like, bringing these, like, rain clouds to this, like, happy area and felt like we could, like, talk to each other (Participant 29, 22–25 years old and receiving treatment, breast cancer)

Conversely, other participants noted negative changes in networks after a personal cancer diagnosis, with negatively impacted friendships commonly mentioned. Some participants mentioned disappointment in friends not being there for them after a personal cancer diagnosis as was expected. One participant acknowledged their friends’ perspectives and challenges in reaching out. Participants mentioned feelings of hurt from friends who did not react as they had expected or hoped:

I kind of got to see who my real friends were, the people who really cared, which is like a blessing and a curse, cause I really—I really cared about them. And I thought they really cared about me. And I guess that’s not the case (Participant 38, 22–25 years old and completed treatment, Hodgkin lymphoma)

Others were disappointed, though not surprised at the perceived negative changes noted in peer networks after their cancer diagnosis. One participant noted hiding their cancer diagnosis from friends due to anticipating this change:

I don’t think I was surprised, I think that’s why I hid it for so long. I hid it for over [a] month. . . I knew the reactions, I think, I was going to get, and I didn’t want them. And I was holding off. If I could hold off even longer, I would have (Participant 13, 15–21 years old and completed treatment, Hodgkin lymphoma)

Others expressed difficulty in how friendships changed after a personal cancer diagnosis to one where friends took on a caretaker role:

. . .I mean, the, like, friend aspect, too, has been difficult to, like, pull back, because you go from seeing—like, I would see my friends every week. And we all lived normal, and then all of a sudden, now I have this, like, weak immune system. And I can’t go or do things. And they would have to come to me or they’d have to take me to appointments (Participant 29, 22–25 years old and receiving treatment, breast cancer)

Coding patterns were consistent across ages and cancer treatment phase.

Discussion

This is one of the first studies to describe how a personal cancer diagnosis impacts AYACS’ social connectedness. Despite social connectedness being a social determinant of health (Holt-Lunstad, 2022) and its important role to total health (Solar and Irwin, 2010), it is not well understood in the experience of AYACS. Understanding AYACS’ social connectedness is critical for several reasons. Firstly, AYACS highly value social connectedness (Christiansen et al., 2015; Warner et al., 2016). Moreover, social connectedness is associated with improved overall health and coping strategies (Zebrack et al., 2007), which is complementary to our study findings in regards to importance of support from family and friends, and mortality reduction (Becofsky et al., 2015). Additionally, peer and family relationships largely influence adolescents and young adults’ health-related behaviors including substance misuse (Ritt-Olson et al., 2005), sexual activity (Widman et al., 2016), and physical activity (Fitzgerald et al., 2012) As Figure 1 illustrates, leveraging social connectedness could offer an avenue to improve AYACS’ health (Bradley and Greene, 2013). Lastly, the COVID-19 pandemic’s damaging effects on social connectedness among youth further prioritizes understanding and improving AYACS’ social connectedness (Lee et al., 2020). Our results support our conceptual model of social connectedness (Figure 1). Through our study we found that while each participant’s social support was different, AYACS leverage social support from their social networks. Negatively perceived changes in social networks, specifically with peers, impacted AYACS-which can have negative downstream impacts on professional development and health.

There are several important implications related to AYACS’ social connectedness for clinical care and research, including intervention development.

Creation of personalized AYACS programming optimizing social connectedness with AYACS engagement

Theme 1 revealed AYACS’ heterogeneity in social support needs, irrespective of age or cancer treatment phase, highlighting and corroborating the necessity for personalized, tailored AYACS programming optimizing social connectedness (Barakat et al., 2016). Interestingly, needs can vary within the same individual; we found some AYACS want to talk to someone, but also withdraw from relationships. Opportunities to engage in varied social programming (e.g., offering AYACS support groups, and one-on-one opportunities for social interaction) could have the biggest reach to the most AYACS. However, this need must be balanced with what healthcare institutions (including community oncology programs where many AYACS receive care) can practically offer. Additionally, engaging AYACS as partners in developing social connectedness-promoting programming and interventions is critical. As an example, this approach was key in creating an AYACS-led podcast at our institution (Rao et al., 2022).

Some participants desired connections with fellow AYACS. Offering programming fostering these connections may be beneficial for some AYACS. Reception to this idea may vary depending on cancer treatment phase as we found in our study, with some participants being more open to connecting with fellow AYACS after cancer treatment has ended, rather than during treatment. We also found older AYACS sensed a “disconnect” with their cancer care environment, further highlighting how connecting with fellow AYACS at a similar point in life stage and treatment course could be beneficial and validating to some AYACS.

Religion and spirituality’s role in AYACS’ social connectedness

Religious support was an important source of social support in AYACS’ social networks (Theme 2). AYACS, compared to younger pediatric patients, are acutely aware of their mortality after being diagnosed with a life-threatening illness, and find religion and spirituality to be comforting (Sira et al., 2020). Religion and spirituality should be considered as components of AYACS’ supportive care when desired, for example, through inclusion of the chaplaincy service in AYACS’ supportive care.

Peer support and AYACS

Theme 2 highlights the multiple social network members who offer AYACS support, an important coping resource. AYACS discussed both positive and negative changes in social networks after a personal cancer diagnosis. Parents and families were prominent sources of support, with a personal cancer diagnosis making familial connections stronger. Notably, peers were a key source of support, yet peers were the network members with whom AYACS experienced negative changes, as we found through Theme 3. Some AYACS experienced disappointment and hurt when peers did not support them in expected ways after a personal cancer diagnosis. While social network changes (i.e., churn) are a natural event in this age group (Halpern-Meekin et al., 2013), for AYACS these friendship network changes can be traumatic as they confront a life-threatening illness when they lean into expected sources of support from peers. We noted these changes consistently across ages and treatment phase groups. Importantly, peers are not often seen in the medical setting like a parent or sibling, and therefore may not be readily acknowledged by the healthcare team in supportive care inclusion. Including peer connections as a component of AYACS’ cancer care is important, as peer networks are a coping resource (Ritt-Olson et al., 2005). Moreover, including peers in AYACS’ cancer care support could be helpful for their peers, who may want to support their friend diagnosed with cancer, but feel uncomfortable and not know the appropriate things to say and do to offer social support. This finding also has important implications to intervention development. The theme of leveraging social networks to promote physical and social health has been demonstrated (Rao et al., 2023). Leveraging peer connections in AYACS’ supportive care is an active area of investigation in our research team.

We found school was an important environment to sustain AYACS’ social networks. Several AYACS described how being out of school due to cancer treatment had a detrimental effect on their social networks, specifically peer relationships. Schools promote social development of adolescents and young adults (Catalano et al., 2004), in addition to professional development and promotion of autonomy/identity. Designing school interventions to foster AYACS’ professional development holds promise to improve AYACS’ life goal achievement as well as social connectedness. Incorporating input of AYACS’ teachers, another identified source of social support, could be valuable to the success of school interventions. Developing school interventions to educate students and staff about cancer and social connectedness could be helpful for AYACS to feel less isolated from their school environment.

While the focus of this article was not to investigate social media usage, we learned through this study that AYACS have a complex relationship with social media. Some participants appreciated the support they received from social media networks, whereas others were suspicious of the authenticity of those reaching out through social media platforms. As social media is a common modality of forming connections among AYACS, future studies could look more specifically at AYACS and social media networks. Additionally, we did not look exclusively at the impact of the COVID-19 pandemic on social connectedness, nor did it emerge as a theme within our analysis process, though it has been linked to reduced social connectedness and higher symptoms of anxiety and depression, and decreased life satisfaction, among adolescents and young adults in the general population (Magson et al., 2021). Future studies could evaluate the impact of the COVID-19 pandemic on AYACS’ social connectedness.

Incorporation of quantitative methods to design social connectedness-promoting interventions for AYACS

Through this thematic analysis, we realize there is a need to incorporate quantitative methods to better understand and measure social connectedness. Without comprehensively understanding and measuring social connectedness metrics including quality, structure and function of social relationships, we cannot improve AYACS’ social connectedness, or measure success of interventions designed to improve social connectedness. As an example, social network analysis (SNA) is a social science method used to rigorously and granularly evaluate social network structure (a component of social connectedness). SNA can evaluate interconnectedness among members of a bounded group (e.g., cancer support group), or an individual’s personal social network. SNA can capture the depth of, changes in, and functions of social networks, and how these facets relate to AYACS’ health. SNA can also provide critical data to inform intervention needs, design, and implementation (Valente et al., 2015). Moreover, using SNA to understand the depth and function of AYACS’ relationships and how aspects of their social networks align with health can help identify AYACS at risk of social disconnect throughout different cancer treatment phases. Based on our findings, SNA can be a useful method to incorporate together with qualitative methods to comprehensively assess social connectedness to inform creation of network-based interventions for AYACS to promote social connectedness.

Study strengths and limitations

Our study had several strengths. We collected data from AYACS representing a broad range of ages, gender, cancer treatment phases, and cancer diagnoses. We had robust male representation, which is significant given males are underrepresented in AYACS psychosocial studies (Lie et al., 2018). We had a high proportion of patients with leukemias and lymphomas, representative of the significant proportion of these malignancies among AYACS (Miller et al., 2020). About two-thirds of participants were post-treatment survivors, which let us capture a rich perspective from those who could reflect on their experience over the cancer continuum.

Our study was limited by being a single center study so our results may not generalize to areas that may be different demographically by race, ethnicity, other sociodemographic variables, or who were ineligible for our study (i.e., non-English-speaking, with history of relapsed cancer, physical or cognitive limitations). Moreover, our study focused on younger AYACS so may not generalize to older AYACS 26–39 years old. Additionally, as the majority of participants were diagnosed with leukemia and lymphomas, our study may be insufficient to identify social support needs and evaluate social connectedness for AYACS with other cancer types.

Conclusions and recommendations

AYACS experience heterogeneity related to social support needs, and leverage multiple relationships and resources when seeking social support throughout the cancer continuum. Their experiences were unique, with some noting negative changes in relationships within their social networks, specifically with peers. Given the value AYACS put in social networks and the role social connectedness plays in health-related behaviors and life goal achievement, we recommend exploring various avenues to understand and improve AYACS’ social networks. A multifaceted approach with AYACS engagement is needed by psychosocial providers to address AYACS’ complex social support needs. Incorporating SNA to better measure and integrate social connectedness metrics into psychosocial intervention design and implementation provides an exciting opportunity for researchers to develop effective network-based interventions focused on strengthening AYACS’ social connectedness to promote health and productivity.

Data sharing statement

The data generated during and/or analyzed during the current study are not publicly available, nor are they available on request due to due to preserving participant anonymity.