Participants were 32 AYAs with advanced cancer [Mage = 18, SD age = 3.2, range 14–25 years] (Demographics, Table 1). Only two patients who were approached for the study declined to participate, both of whom were in the older adolescent/early adult stratum aged 18–25. Acute Lymphoblastic Leukemia (ALL) was the most common diagnosis (41%). About half of the sample was male (59%) and self-identified as White/Caucasian (56%). Specifically, in response to the interview question, “Who do you feel has helped you the most during this time?,” the majority of participants (94%) identified family as their primary source of support. Of those participants who identified family as their primary support, 90% named their “parents”, or specifically named their “mom” (53% of participants). Two participants (6%) identified peers as their primary source of support. In addition to primary sources of support, participants went on to describe multiple other sources of support. We selected exemplar quotes of the most frequent types of social support provided by specific sources of support (Table 2).

We classified code frequency counts for types of social support provided by specific sources of support (Fig. 1). In terms of “source of support” code frequency counts, family was the most commonly cited source of support (52.56% of all source of support codes, coded 462 times/879 total), followed by clinicians (18.20% of all source of support codes, coded 160 times/879 total), peers (17.18% of all source of support codes, coded 151 times/879 total), existing community (6.48% of all source of support codes, coded 57 times/879 total), and cancer community (5.57% of all source of support codes, coded 49 times/879 total).

Code frequency counts for types of social support provided by specific sources of support

Family (mainly their parents) universally provided all types of support: emotional support (52.91% of all emotional support codes, 200/378), informational support (57.42% of all informational support codes, 147/256), social companionship (44.22% of all social companionship codes, 88/199), and instrumental support (58.70% of all instrumental support codes, 27/46). AYAs described emotional support from family members as affirmations of love and providing reassurance. In terms of informational support, AYAs consistently stated that parents knew as much about their diagnosis and treatment as they did, oftentimes more. The majority of AYAs partnered with their parents in all conversations with clinicians and approached medical decision-making “as a team”. Family members also provided social companionship, “always being there in the hospital”. For AYAs who had to relocate to the treating hospital, a parental caregiver accompanied them, and they were separated from other family members. In addition, parental caregivers were described as the primary source of instrumental support, “what I call my secretary for my medical treatment”.

Clinicians provided the following types of support: informational support (35.55% of all informational support codes, 91/256), emotional support (14.29% of all emotional support codes, 54/378), social companionship (5.03% of all social companionship codes, 10/199), and instrumental support (10.87% of all instrumental support codes, 5/46). Clinicians primarily provided informational support. AYAs did not refer to clinicians with specificity and commonly referenced their “medical team”, “doctor”, or “therapist”. AYAs described their medical team as competent, knowledgeable, and willing to answer questions from the patient and family members. Clinicians were described as having open communication with AYAs and their family members, and that they provided guidance on medical decisions. Clinicians were also described as providing emotional support, mainly in the form of a patient’s trust in their medical team with longstanding relationships forged over time.

Peers provided the following types of support: emotional support (18.52% of all emotional support codes, 70/378), social companionship (31.66% of all social companionship codes, 63/199) informational support (4.69% of all informational support codes, 12/256), and instrumental support (13.04% of all instrumental support codes, 6/46). Peers primarily provided emotional support and social support. They relied on existing friendships from pre-cancer diagnosis, and five participants named a “boyfriend” or a “girlfriend”. In interactions with peers and romantic partners, AYAs strived for normalcy and wanted to engage in developmentally appropriate experiences not centered around their cancer diagnosis or treatment (e.g., “hanging out”, spending time with friends, playing video games, going to the movies, texting).

Existing community and cancer community were the least frequently discussed sources of support. Existing community provided the following types of support: emotional support (8.47% of all emotional support codes, 32/378), social companionship (7.04% of all social companionship codes, 14/199), instrumental support (15.22% of all instrumental support codes, 7/46), and informational support (1.56% of all informational support codes, 4/256). Cancer community provided the following types of support: social companionship (12.06% of all social companionship codes, 24/199), emotional support (5.82% of all emotional support codes, 22/378), informational support (0.78% of all informational support codes, 2/256), and instrumental support (2.17% of all instrumental support codes, 1/46). Existing community and cancer community provided similar types of support – emotional support and social support. Existing community, when discussed, consisted of spiritual and religious communities, sports communities, video-gaming communities, and work communities. Some AYAs described attending Bible study and church service and knowing that “they’re all praying for me, and that means the world to me”. One AYA described participating in sports with a national organization that supports individuals with health conditions. Cancer community, when discussed, consisted of cancer support groups and connections made with other pediatric cancer patients during inpatient stays. AYAs described the value in talking to peers with cancer who understood their experiences and to “know you’re not the only person going through it”.

Coders (NL, KSB) demonstrated 100% agreement in global Sufficiency of Support codes prior to consensus conversations. We coded 11/32 (66%) participants as having sufficient social support. We coded 21/32 (34%) of participants as having mixed levels of social support, meaning that roughly one-third of our sample expressed feeling unsupported, dissatisfied with, or an absence of support in some domains. With peers, AYAs described difficulties maintaining social relationships, not being able to see their friends, and feeling left behind in reaching certain developmental milestones (e.g., going to college, getting a job). One AYA said “I used to have a lot of friends. I have like two now. …. I just feel behind and I feel sad sometimes that I’ve lost something.” (AYA-5014, 17 year-old, female) Another said “Each time I want to start college I relapse, right before school starts. And it's tough because I want to be with my friends, and they’re off going to college, and I guess, be with them at the same level, but unfortunately I have to attend [to] my health, which is the most important thing at this moment.” (AYA-5005, 19 year-old, male) AYAs also expressed being treated differently because they have cancer, with one stating “People seem to be, like acting differently around me … It felt like they were kind of pitying me. Of course, obviously I wouldn’t like that. But you can’t really just tell them to stop.” (AYA-5018, 17 year-old, male). Several AYAs voiced that cancer can be a lonely and isolating experience because “it’s hard to rant to someone about all this when they have never been through it” and “they just don’t understand”. They also described wanting to connect with other AYAs with cancer and having limited opportunities to do so, that “People with cancer exactly understand. … They can just laugh and you just know, because there are just so many things that only people with cancer have experienced.” (AYA-5014, 17 year-old, female).

With regard to family, AYAs frequently described parents and other caregivers as their primary and oftentimes sole source of support. AYAs described feeling guilty about the impact of cancer on their loved ones and worries about caregiver burden: “I’ve seen my parents go through it, where your child is having to go through something as horrendous as cancer and there’s nothing you can do about it. That, I’m sure, must be one of the worst feelings in the world.” (AYA-5028, 19 year-old, male) Similarly, another AYA described worrying about their mom, and “worry that it’s a lot of work for her, how much she’s doing, and how she’s feeling” even though their mom responds “it’s her job to help me, and that I don’t need to worry.” (AYA-5010, 14 year-old, male) Another aptly summarized, “Cancer, it’s not what it does to you but it’s what it does to the people around you.” (AYA-5019, 18 year-old, male).