“It's Kind of Complicated”: A Qualitative Exploration of Perceived Social Support in Young Adult and Young Adult Lesbian, Gay, Bisexual, Transgender, and/or Queer Cancer Survivors

Abstract

Purpose:

This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ).

Methods:

Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support.

Results:

Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system.

Conclusion:

YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.

Introduction

The developmental stage of young adulthood is often characterized by a shift to independence.^1,2 However, the disruption of cancer diagnosis, treatment, and survivorship can complicate this transition, impact identity, and self-concept.^1,3,4 There is strong evidence that social support plays a critical protective role in cancer survivor well-being.^5–7 Yet, young adult (YA) survivors report a high level of unmet social support needs.^8,9 An emerging body of work suggests that YAs are at higher risk for adverse outcomes than older adult cancer survivors because of unmet needs compounded by disrupted developmental milestones.

Survivors in underserved and minoritized groups may be at even greater risk for poor outcomes. YAs are increasingly diverse, not only in race/ethnicity,¹⁰ but growing numbers of YAs identify as lesbian, gay, bisexual, transgender, queer (LGBTQ), or with sexual orientations and genders other than heterosexual, cisgender, or gender binary.¹¹ For example, in 2020, 9.1% of Millennials (aged 24–39) and 15.9% of Gen Z (aged 18–23) identified as LGBT,¹² compared to 5.6% of U.S. adults.¹¹ Yet this diversity is often not reflected in cancer care or research.^13,14 The intersections of young adulthood and LGBTQ status can present additional unique challenges and barriers to those undergoing and receiving cancer care.¹⁵ Resources available to YAs may not be adequately tailored to this dynamic and diverse population, which can further exacerbate risk.¹⁶

There is a growing recognition of the need to better tailor care for YA survivors to address their unique support needs within their current sociocultural context, including intersectional experiences, such as variation in sexual orientation and gender identity.^17,18 These characteristics shape individuals' cancer experiences, as many YAs may need and prefer culturally-specific and tailored types of support.^19,20 However, more work is needed to define how existing support fits these intersectional needs.

The goal of the current study was to explore perceptions of social support as described by a diverse group of YA cancer survivors.

Methods

This was a secondary analysis of semistructured interview data obtained during a longitudinal observational pilot study focused on social support networks and interactions of YA and LGBTQ cancer survivors and their care partners.²¹

Study participants and recruitment

Participants were recruited through two National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers in Southeast and Intermountain West regions of the United States. Eligibility criteria included being 18 and older; ability to speak/read English; a current/historical cancer diagnosis, currently engaged in treatment, services, monitoring, or follow-up related to this diagnosis. Additional inclusion criteria for the Southeast site included the survivor being aged 22–39 (n = 8); additional inclusion criteria at the Intermountain site (n = 6) included the survivor being LGBTQ. The current analysis focused on young adult survivors only.

Potential survivors were identified by clinic staff or through advertisements on social media between August 2019 and May 2020. Research staff screened for eligibility before participant consent and enrollment. This study was determined to be exempt by the Institutional Review Board by the institution in the Southeast and required written consent for the Intermountain West institution.

Study procedure

At enrollment, survivors completed an initial baseline assessment that included demographics and other self-report measures (discussed elsewhere²¹); at the completion of the study period, trained study staff (R.M. or K.T.) conducted a semistructured individual interview in person at the cancer center, by phone, or by videoconference. In addition to feasibility and usability data collected for the primary study,²¹ participants were asked to reflect on their experience as a YA and/or LGBTQ YA survivor and their social support, including the amount, sources, and quality of interactions, and effectiveness in meeting support needs. Interviews were audio-recorded and transcribed.

Analysis

Demographics were assessed with descriptive statistics. Qualitative analysis followed a descriptive approach to content analysis. Qualitative data were reviewed and discussed by authors (R.M., D.K., M.R., K.G.C.) trained in qualitative analysis, and an initial round of codes was developed to reflect social support-related content categories. D.K. and R.M. coded the data, compared and discussed the coding patterns, and organized coding based on levels of social support. Coders met multiple times to review coding, organize codes, and discuss coding agreements and disagreements until consensus was reached.²² Coding decisions were also discussed among the broader research team to ensure the relevancy of coding and interpretation to the broader literature.

Results

Participant characteristics

Twelve YA cancer survivors participated in interviews. Demographic characteristics are presented in Table 1. Interviews lasted between 8 and 24 minutes (M = 17.5).

Table 1.

Participant Demographics

	Mean (range), years
Age	28.2 (21–38)
Time since diagnosis	4.4 (1–16)
	N (%)
Gender
Male	6 (50)
Female	6 (50)
Transgender
Yes	2 (16.7)
No	10 (83.3)
Sexual orientation
Heterosexual	8 (66.7)
Bisexual	1 (8.3)
Lesbian/gay	1 (8.3)
Queer	1 (8.3)
Pansexual	1 (8.3)
Race
Black	2 (16.7)
White	10 (83.3)
Relationship status
Married	6 (50)
Single (never married)	3 (25)
Committed relationship	3 (25)
Education
High school graduate	2 (16.7)
Some college or vocational school	4 (33.3)
Some graduate or professional school	1 (8.3)
Graduate or professional degree	5 (41.7)
Religious preference
Catholic	1 (8.3)
Christian	1 (8.3)
Jewish	2 (16.7)
Protestant	5 (41.7)
Not religious	2 (16.7)
Other	1 (8.3)
Financial situation
More than adequate	0
Comfortable	8 (66.7)
Not very good	4 (33.3)
Income
Less than $9,999	1 (8.3)
$10,000–$24,999	2 (16.7)
$25,000–$39,999	2 (16.7)
$40,000–$49,999	1 (8.3)
>$100,000	4 (33.3)
Prefer not to answer	2 (16.7)

Qualitative findings

Survivor participants brought up three main levels and sources of support: family, peers, and health care providers/institutions. YA and/or LGBTQ status was identified as relevant to the adequacy of support received from each of these sources.

Familial support

Many participants described parents taking a hands-on role in the survivor's care and lives more broadly. Family support often included financial help, advocating for the participant, and providing advice with treatment decisions. Survivors acknowledged the importance of being covered under their parents' insurance and having parents who knew how to navigate the health care system. One survivor described his mother as his “number one cheerleader” (5106, 33-years old, non-LGBTQ). Another survivor mentioned it was helpful that her mother worked to keep other relationships in her life “normal”: “My mom tries to take the stress off of my husband so that our relationship can be like a married couple” (5102, 25-years old, non-LGBTQ).

Some survivors who lived far away from their parents still identified the importance of family support: “Mom wasn't here, but…we are absolutely fantastic over the phone with each other, absolutely great with a little distance” (1105, 24-year-old, LGBTQ). However, other survivors noted that distance was a barrier to receiving support from family. For example, one survivor noted that she “used to have more people in my life. But after moving here and [undergoing cancer treatment]” she reported that she did not have as much practical, in-person support:

I don't have anybody physically with me except my husband. And he works a shift, 12 hours a day. Now I literally have no one beside me. And I remember that I fainted many times and I don't have anybody to help me or support me…in buying stuff, shopping, or taking you to the hospital or even going out with me for breakfast. (5108, 31-years old, non-LGBTQ)

While having strong relationships with family members can have a positive impact on YAs by offering a robust emotional base and resources for more complex or resource-intensive needs such as day-to-day care or financial support, participants also reported that preexisting conflict in family relationships could complicate support. For instance, one survivor described a poor relationship with their father before their cancer diagnosis. After the diagnosis, “everyone really had stepped up, minus my father. He just had a cow. He got worse” (1105, 24-year-old, LGBTQ).

Another survivor also shared the difficulty in getting family support due to complex relationships that were complicated by their family members' lack of acceptance of and support for their LGBTQ identity:

I would say empathy [is lacking] because, at least for us, our family involvement is very, very complicated and emotional laden, and so we don't get the empathy that other people might get from their family and we also don't get the practical help that other people would get from their family. (1104, 24-year-old, LGBTQ)

Peer support

Participants described the importance of peers in an “inner circle” or who may be part of a “chosen family,”²³ potentially blurring the lines between familial and peer support. For broader peer relationships, experience with cancer was a defining feature in the types of interactions and helpfulness of support offered. For example, some YAs, particularly younger survivors still in school, reported feeling like their peers do not understand their situation:

In school, it's kind of complicated, especially as a cancer patient. I think that I have to not bring up cancer in school. Because it's such a stigmatized topic, especially as a young person. (1102, 21-year-old, LGBTQ)

However, those who had strong school-based support networks may also face difficulties maintaining those ties as they or their peers begin careers:

I think I could use maybe a teensy bit more general social support, just people to spend time with now that I just graduated. I'm used to hanging out with all the people from my cohort and now I'm about to move out of state and everybody else is, too. So that's going to be a big change that's actively going on…literally every day somebody is moving away. (1105, 24-year-old, LGBTQ)

Even those who indicated strong, in-person peer support reflected that it often weakened over time:

People do kind of stop asking you to go out and do things when you're in treatment and you're not feeling well and you always say ‘no.’ And then they stop asking, and now I do feel okay, I'm ready to go do things again. But people get back to their lives and then don't think of it anymore. (5103, 38-year-old, non-LGBTQ)

The same survivor also noted that emotional support further diminished after treatment because she looked “normal,” so the people close to her “assume I'm doing okay and getting better, but I live with this every day. So, I think I am missing some support from some of my close circle of people.”

Peer cancer survivor relationships seemed especially lacking. For instance, one survivor noted that the group therapy she went to was composed of older individuals: “I need a group the same age as me. They can feel or think the way I think or the way I feel” (5108, 31-year-old, non-LGBTQ). This can be compounded for LGBTQ YA survivors; as one participant noted, “[We] often feel out of place in…cancer support groups. So having other people to connect with, I think is super important, and that's something that's really lacking” (1102, 21-year-old, LGBTQ). Cancer support that includes the understanding of similar life experiences, whether that be YA experiences, LGBTQ experiences, or both, seemed especially important to participants.

Health care provider and system support

Many survivors stated that programs at the cancer center or through national organizations were integral in helping meet survivors' support needs. Specifically, the specialized staff that was available through those programs was important. For example, one survivor recalled supportive interactions with a social worker:

I asked them that I needed my dog to be with me everywhere. So they helped me to make my dog an emotional support dog. That was a very good thing for me. [The social worker] talked to me many times… asked me if I need anything to help. That was very helpful. (5108, 31-year-old, non-LGBTQ)

However, some survivors reported that support within the health care system was more responsive at the beginning of the cancer trajectory and at times there was a lack of follow-up. One survivor stated that providers brought up support needs at the initial appointment, but then “that was it” (5106, 33-year-old, non-LGBTQ).

Some YAs in our study, especially those identifying as LGBTQ, reported feeling unsupported by the system more broadly:

If you're in the [young adult] age range you need different things than real young and older people, but you kind of feel isolated and like you don't fit into the medical system. It's kind of similar to gender and sexual minorities, you don't fit in. (1103, 36-year-old, LGBTQ)

Survivors in our study picked up on different patient/provider power dynamics and resource availability which they attributed to intersectional factors (“my age, my gender, me being trans” [1102, 21-year-old, LGBTQ]). They also suggested several helpful steps that institutions could take, from “having someone that's within the institution helping all the way through” (1102, 21-year-old, LGBTQ) to acknowledging and validating diverse survivors:

Just simple, pure validation that we are equal in what we're going through as a cisgender heterosexual couple would be…it's just that validation, just terms matter. Having her called my girlfriend, it matters. Things like nurses getting awkward—they ask me about a boyfriend, and they ask a lot of questions, and then when they find out it's a girlfriend the questions stop. It's just simple validation. It's small things to not make us feel like we have to shrink…People don't understand. They're like “It's such a small thing.” It is, but it's a small thing on top of a big stressful thing. (1105, 24-year-old, LGBTQ)

Cancer survivors may be left wondering if their unmet needs or negative experiences are related to a particular identity—being YA and/or LGBTQ. This uncertainty may place survivors in an uncomfortable position with their providers and the health care system.

Discussion

Previous research has identified the critical need for YA survivors to receive adequate support, including information, a sense of belonging, and emotional support.²⁴ However, these needs are not always met, and those in YA survivors' social networks are not always necessarily supportive.^15,25 Participants in this study described benefits and frictions of social support at three levels: familial, peer, and health care provider/system.

Many YA survivors in our sample described relying on members of their family of origin, especially parents, for support, which is widely reported in the literature^7,25; however, this can lead to a delay or regression in the developmental milestone of YAs becoming independent from parents.²⁶ Parents can and do offer important support, such as financial or a more seasoned perspective, that may be unavailable in the rest of the cancer survivor's network.²⁷ At the same time, there can be preexisting relationship conflict or different ideas about the needed support from parents or survivor independence that can create a barrier to receiving needed emotional support.²⁸ These conflicts can range from disagreements about how/how much parents should help, different ideas of parental control versus survivor independence, or even rejection due to LGBTQ identity.^29,30

Clinical teams must be aware of familial complexity and encourage and align parents or chosen family to appropriate supportive resources while offering opportunities for YAs to interact in developmentally appropriate ways with peers and cultivate their independence.^26,31 Clinical teams must also recognize the inherent heteronormativity that belies many of their assumptions of YA social benchmarks and family structures, especially as new generations construct different norms.³²

YA survivors in our study indicated that peer support was desired, but there were several barriers to receiving this support. It is important to note that “peers” could be cancer survivors or not and may offer different kinds of support.³³ In a life stage where many YAs are highly mobile, some participants reported struggling with a lack of support locally. YA survivors in other research have indicated how helpful they found physically-present supportive others.³⁴

In addition, YA peers likely have relatively little experience with cancer, distancing themselves from the unfamiliar and challenging circumstances they may not be developmentally ready for.³⁵ Other work has indicated that peers may be ineffective in attempting to provide support for YA cancer survivors,^35,36 although social interactions with peers can be valuable for normative autonomy and serve as a distraction from cancer.^36,37 However, an absence of peer support or poorly executed support can have long-term effects, including feeling stigmatized, impacting how YA survivors integrate their cancer experience into their self-concept.³⁶

Finally, our study also identified the important role of support from health care providers. Having support within the health care team is linked to better quality of life and symptom control,^38,39 suggesting the importance of health care providers in meeting YA support needs. However, in previous work and in our study, survivors report that support from providers often decreases over time.³⁸ Providers often have limited time to cover an extensive number of topics and may not be able to dedicate the time to revisit issues previously discussed with survivors.

Furthermore, many providers report feeling uncomfortable discussing some sensitive topics, especially sexual health⁴⁰ or LGBTQ survivors' needs.⁴¹ YA survivors can feel uncomfortable or distressed if providers do not sensitively approach topics of romantic/sexual attraction, orientation, and inclusivity.⁴² Microaggressions—the verbal, behavioral, and environmental forms of discrimination that disparage and oppress minority identities and marginalized groups, regardless of the perpetrator's intent—may also exist in oncology settings.⁴³ While the interactions are small, the impact can have large impacts on the people who experience microaggressions every day. Thus, it may be beneficial for providers to receive education in LGBTQ health needs and communication skills.

Systems can also address underserved survivors' need for peer support by organizing support groups specific for YA or LGBTQ survivors.²⁰ More targeted groups may reduce potential awkwardness and barriers to attendance based on the gap between themselves and the “typical” cancer survivor.³⁴ Programs offered to help educate and support YA survivors' families and peer groups, including friends or peers without cancer, may also be beneficial. In addition to addressing caregiving needs, these programs may help close others better understand the survivor's needs and how best to offer support while maintaining survivor independence. In addition, services offered to all cancer survivors should be updated for the sociocultural and economic shifts in society; for example, helping survivors navigate finding employment or navigating a return to education.²⁶

While this is one of the first studies to report qualitative data on YA cancer social support needs at different levels in a diverse population, our findings should be interpreted with caution as exploratory. Our sample was relatively small and underrepresents the racial and ethnic diversity that is prevalent in YAs more broadly.⁴⁴ Although having participant representation from different geographic areas is a strength, this is also a limitation to generalizability as YA survivors' experiences likely vary broadly based on access to services like dedicated programs for adolescent and young adult survivors. Location, place of treatment, and provider competencies likely greatly impact survivor experience.

Conclusion

YA cancer survivors have support needs that are often addressed by parents, peers, and the health care system. However, barriers such as complex relationship histories and lack of targeted and tailored programs can prevent survivors from receiving adequate support. Health care systems should work to offer more inclusive programs, recognizing the needs of diverse YA survivors through the cancer trajectory. More research on YA survivors' experiences may also advance the development of tailored interventions.

Authors' Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by D.K., R.M., K.T., M.R., and K.G.C. The first draft of the article was written by D.K., and all authors commented on previous versions of the article. All authors read and approved the final article.

Availability of Data and Material

Available upon reasonable request.

Ethical Approval

This study was determined to be exempt by the Institutional Review Board by the institution in the Southeast and required written consent for the Intermountain West institution.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Consent of Publication

Participants provided informed consent regarding publishing their data.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was supported by the Dick and Tammy Burton Foundation Pilot Grant Award, University of Utah College of Nursing; Moffitt Cancer Center Adolescent and Young Adult Program with support from Swim Across America and the Bay Area Advisors; 5T32CA090314-16 funded Dr. Ketcher's effort; F31NR018987 funded Ms. Wawrzynski's effort; The REDCap application reported in this publication was supported, in part, by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UL1TR001067 for period May 1, 2013 to March 30, 2018 and UL1TR002538 for period April 1, 2018 to February 28, 2023.