Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care

Abstract

Purpose:

This study was designed to identify and explore the social support needs and preferences of young adult cancer patients during the transition process from active treatment to survivorship care.

Methods:

Semi-structured qualitative interviews were conducted with study participants (n = 13, ages 17–25 at the time of cancer diagnosis) within ∼6 months of completion of active treatment and again 3 months later. Participants completed a sociodemographic questionnaire at the first study visit. Applied thematic analysis was used to identify themes from participant interviews.

Results:

Six key themes and 12 subthemes emerged regarding participant interactions with their support system (“Being there,” “Staying strong,” and “Treat me the same”) and health care team (“Connection and relationship building” and “Seeking knowledge and engaging in advocacy”), as well as treatment effects (“Uncertainty, Loss, & Changes in Identity” and “Ups & Downs of Physical Symptoms”), coping strategies (“Keep busy” and “Keep a positive vibe”), support resources (“Support needs change over time”), and post-treatment experiences (“Trying new things to cope with losses” and “Managing expectations with realities”).

Conclusion:

Study findings suggest that supportive care needs can change during the transition process from active treatment to survivorship care. Young adult life transitions, such as finding employment and making new friendships, are more stressful when complicated by ongoing physical and psychological treatment effects. Social stressors and potential barriers to participation in supportive care services should be discussed openly with patients and caregivers, especially prior to transitions in care.

Introduction

Understanding the social support needs of adolescent and young adult (AYA; ages 15–39¹) cancer patients is critically important in designing and maintaining effective psychosocial programming.² Individuals may draw upon support from a network of individuals throughout the care trajectory, including family and friends, other cancer survivors (virtually and/or in-person), and their health care team. Various types of support, including emotional support, network support, esteem support, tangible aid, and informational support, may be needed at different times in the care trajectory depending upon the stressors at that time.³ AYAs prefer supportive care resources that reduce feelings of loneliness, create a sense of belonging, and provide opportunities to connect with other AYAs.⁴

Recent research examining the social functioning of AYAs over time suggests that improvements in social functioning usually take place within the first year post-diagnosis and that on average no significant additional improvements occur between 12 and 24 months.⁵ AYA cancer survivors who consistently scored low on measures of social functioning reported more physical symptoms and higher levels of psychological distress.⁵ Research examining the links between sociodemographic and medical factors and AYA cancer survivor outcomes suggests that female gender, the diagnosis of a hematological disorder, hematopoietic stem cell transplantation, and a shorter off-treatment period are risk variables for poorer health-related quality of life and social functioning among AYA cancer survivors.⁶

During the transition to survivorship care, there are unique challenges, including redefining “normalcy,” reconnecting with family and peers, and managing fear and uncertainty associated with follow-up procedures and risk of cancer recurrence.⁷ Examination of effective transition therapy for AYAs remains limited in the field. An integrative literature review examining effective transition therapy for AYAs⁸ identified four studies that empirically examined interventions. The four empirically examined interventions were dynamic group therapy, an educational cancer retreat, an online cancer forum, and online cognitive-behavioral therapy. The five components of potentially successful interventions that were most commonly referred to across all studies included cancer education, coping, sexual identity, maintaining normalcy, and AYA support. These components should be considered in the development of transition programming for AYAs.⁸

This study contributes to the emerging literature examining the social functioning and supportive care needs and preferences of AYA cancer patients (ages 17–25 at the time of cancer diagnosis) during the transition process from active treatment to survivorship care. The purpose of this study was to identify opportunities to enhance supportive care services for young adult cancer patients during this transitional phase in the care trajectory in the context of their ongoing developmental, psychosocial, and medical needs.

Methods

Study design

Using a concurrent embedded design,⁹ this study explored the social functioning of young adult cancer survivors (ages 17–25 at the time of cancer diagnosis; ages 19–27 at the time of study participation) during the transition process from active treatment to survivorship care (n = 13). Qualitative interviews were the primary data source, with supplemental self-report measures of social functioning used for descriptive purposes. Semi-structured qualitative interviews were conducted with study participants at two time points: within ∼6 months of completion of active treatment and again ∼3 months later. Of the 13 initial interviews, 10 were conducted in-person at the hospital, 2 started in-person at the hospital and were completed by phone, and 1 was conducted off-site at a private space in a coffee shop chosen by the participant for geographic convenience. All interviews were audio recorded. At the time of the first study interview, participants were at various points in the transition process from active cancer treatment to survivorship care, such as at their last chemotherapy appointment, at a radiation appointment following completion of chemotherapy, in the hospital recovering post-bone marrow transplant, or at a 3- or 6-month post-treatment follow-up visit. Participants also completed a brief sociodemographic questionnaire at the first study visit. All follow-up interviews were conducted through phone.

The Transactional Model^10,11 and the Optimal Matching Model of Stress and Social Support¹² were used to help examine interactions between stress response, coping processes, and the social support system. The Social Ecological Framework^13,14 was used to explore the reciprocal relationship between an individual and his/her social environment. The principal investigator, a licensed clinical social worker, and social work doctoral candidate at the time of data collection conducted all study interviews. The principal investigator had no prior relationship with study participants. Before the first study interview, all participants were informed that this study was dissertation research designed to help inform transition care for AYAs. All study authors have experience in the field with AYAs.

Study participants

Young adult cancer patients (n = 13; ages 17–25 at the time of cancer diagnosis; ages 19–27 at the time of study participation) were recruited over a period of ∼5 months (from June 2017 to November 2017) from a pediatric (n = 9) and adult (n = 4) academic medical center. Purposive sampling was used in this study. The eligibility criteria for study participation included being treated for cancer at either the pediatric or adult academic medical center where this study was conducted, diagnosis with cancer between the ages of 18–25 years old, as informed by the Theory of Emerging Adulthood,¹⁵ and being within ∼6 months of the completion of active treatment at the time of study enrollment (as determined by the referring health care provider). One participant who was diagnosed with cancer 1 week before his 18th birthday was included in the study sample. Two patients declined participation in the study. Exclusion criteria included diagnosis of brain tumor and transition to end-of-life care. Informed consent was obtained from all study participants. Of the 13 patients who consented to participate in the study, 1 patient died before the follow-up interview.

Sociodemographic data were self-reported by study participants at the initial visit (Table 1). There were male (n = 7) and female (n = 6) study participants. There was racial/ethnic diversity among study participants: Hispanic/Latino (n = 4), non-Hispanic white/Caucasian (n = 4), Asian/Pacific Islander (n = 3), and mixed race (n = 2). At the time of the initial study interview, participants had a range of educational attainment, including graduated high school or less (n = 4), completed some college or attained an associate degree (n = 5), or graduated college or higher (n = 4). The most common diagnoses among study participants were acute lymphoblastic leukemia (n = 4), testicular cancer (n = 2), and Hodgkin lymphoma (n = 2). The majority of patients received both chemotherapy and radiation (n = 7). Three participants were uninsured at the time of their cancer diagnosis.

Table 1.

Participant Sociodemographics ( n = 13)

	n (%)	Range
Age (in years) at the time of cancer diagnosis		17–25
Age (in years) at the time of study participation		19–27
Gender
Male	7 (53.85)
Female	6 (46.15)
Race/ethnicity
Hispanic/Latino	4 (30.77)
Caucasian/Non-Hispanic white	4 (30.77)
Asian/Pacific Islander	3 (23.08)
Non-Hispanic white and Asian/Pacific Islander	2 (15.38)
Educational attainment (at time of initial interview)
Some college/associate degree	5 (38.46)
College graduate or higher	4 (30.77)
High school graduate or less	4 (30.77)
Cancer diagnosis
Acute lymphoblastic leukemia	4 (30.77)
Testicular cancer	2 (15.38)
Hodgkin lymphoma	2 (15.38)
Acute myeloid leukemia	1 (7.69)
Non-Hodgkin lymphoma	1 (7.69)
Wilms tumor	1 (7.69)
Rhabdomyosarcoma	1 (7.69)
Ewing sarcoma	1 (7.69)
Treatment received
Chemotherapy and radiation	7 (53.85)
Chemotherapy, surgery, and radiation	2 (15.38)
Chemotherapy	2 (15.38)
Chemotherapy and surgery	2 (15.38)
Health insurance status at time of cancer diagnosis
Insured	10 (76.92)
Uninsured	3 (23.08)

Study measures

Sociodemographic questionnaire

A sociodemographic questionnaire was developed specifically for this research study. At the initial study visit, participants were asked to provide their age (in years) at the time of their cancer diagnosis, age (in years) at the time of study participation, cancer diagnosis, gender, race/ethnicity, educational attainment (at the time of study participation), health insurance status at the time of cancer diagnosis (insured/uninsured), and cancer treatment received (chemotherapy and/or surgery and/or radiation).

Interview guides

Two semi-structured interview guides were developed specifically for this study, one for the initial study visit and another for the follow-up study interview (Appendix 1). Participants were asked if they had accessed supportive care resources during and/or after treatment. Participants were also asked about their perceptions of navigating social situations and their experiences of social isolation and social support. In follow-up interviews, participants were asked if their perceptions about navigating social situations (e.g., friendships, career, school, and dating) had changed at all since finishing active treatment. Interview guides were developed based upon clinical experience and the current AYA oncology literature. The interview guide was revised based upon feedback from faculty mentors and the AYA Cancer Program Manager where this study was conducted. The Institutional Review Board approved the final version.

Data management and analysis

The principal investigator transcribed all interview recordings. Transcripts were stored and analyzed using ATLAS.ti version 8.1.2 for Mac. Applied thematic analysis¹⁶ was used to identify and explore themes from participant interviews. First, the principal investigator reviewed the interview transcripts to identify themes representing both implicit and explicit ideas within the data. Next, codes and subcodes were developed to represent identified themes. The themes (codes) emerged when reviewing the interview transcripts by grouping together ideas and experiences that participants discussed within and across interviews. The codes were developed inductively (from the data generated by the study interviews). The themes were further categorized into subthemes to help elucidate the complexities of the key themes. For example, the key theme of interactions with the support system was further categorized into three subthemes: “being there,” “staying strong,” and “treat me the same.” There were no new themes identified during analysis of the last interview, suggesting code saturation.¹⁷

An iterative approach was used for codebook development. Three interview transcripts were randomly selected to develop the codebook draft. The principal investigator and a coding partner (an oncology social worker and social work PhD candidate) coded the same three transcripts using the codebook draft. The codebook was revised and transcripts were recoded until 88% intercoder reliability was reached. Both coders agreed that the codes adequately captured the content of the interviews.

Strategies to enhance rigor

The Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for qualitative research involving interviews and focus groups¹⁸ was used to help foster rigor in all aspects of this study. An audit trail was kept throughout data collection, including detailed notes after each study encounter. In regard to reflexivity, the impact of the clinical training and experience of the principal investigator on data collection and analysis was considered. Member checking was conducted following completion of data analysis. A one-page sheet was developed summarizing the key themes and subthemes that were found in this study. The summary of findings was emailed to six participants who had expressed their interest in learning about the study findings. Of the six participants who expressed interest in reviewing the study findings, four participants responded and provided their feedback affirming the study findings with their experiences.

Results

There were 6 key themes and 12 subthemes that emerged about the social functioning of young adult cancer patients during the transition to survivorship care (Table 2). Each of the key themes and subthemes will be discussed. Participant quotes will be incorporated throughout, with notation of their current age (in years) at the time of study participation, their gender (M/F), and their cancer diagnosis.

Table 2.

Key Themes and Subthemes

Themes	Subthemes
Interactions with support system	Being there
	Staying strong
	Treat me the same
Interactions with the health care team	Connection and relationship building
Interactions with the health care team	Seeking knowledge and engaging in advocacy
Treatment effects	Uncertainty, loss, and changes in identity
Treatment effects	Ups and downs of physical symptoms
Coping strategies	Keep busy
Coping strategies	Keep a positive vibe
Support resources	Support needs change over time
Post-treatment experiences	Trying new things to cope with losses
Post-treatment experiences	Managing expectations with realities

Interactions with the support system

The first key theme that emerged was “Interactions with the Support System.” The key subthemes that emerged about participant interactions with their support system included “Being there,” “Staying strong,” and “Treat me the same.” Study participants recounted meaningfully about friends and family who were physically there with them throughout treatment. They discussed the practical support provided by loved ones who helped them manage their illness, such as taking notes during medical visits and arranging follow-up care. Participants frequently identified one primary support person who was consistently there with them throughout treatment. This person was identified as their mother, sibling, or partner. This person filled many functions and responsibilities, often described as going through treatment with them as if they themselves had cancer. Participants consistently emphasized needing their support system but at the same time not wanting to burden their family and friends. As one participant described, “I think a big part of it is my family, I stay strong for them because it's kinda like if I break down they're trying to stay strong for me as well, so I can't, I don't allow myself, or if I do I have to do it on my own, I cry by myself in private” (age 25, M, testicular cancer). Participants emphasized having control over if, when, and with whom they discussed their cancer diagnosis and treatment. With friends whom they had known before their cancer diagnosis, they wanted to be treated in the same way as before their cancer diagnosis. A couple of participants described feeling frustrated with being called “strong” and “inspirational.”

Interactions with the health care team

The next key theme that emerged was “Interactions with the Health Care Team.” The two subthemes that emerged about interactions with the health care team were “Connection & Relationship Building” and “Seeking Knowledge & Engaging in Advocacy.” Participants commented on their experiences as a young adult being caught between pediatric and adult care settings. Participants described wanting to connect with their health care team on a deeper level, going beyond conversation related to their cancer diagnosis and treatment. Participants used humor to build rapport with health care team members and to cope with the treatment process. One participant described how her health care team uniquely appreciates her morbid sense of humor saying, “… if I walk outside probably, I'd be hard pressed to find someone who thinks like my comment about my nice coffin that I got at Costco is very funny” (age 19, F, Hodgkin lymphoma). Participants consistently emphasized seeking knowledge about their cancer diagnosis and treatment and making their voice heard in treatment decision-making processes. One participant recommended for other young adult cancer patients to “… educate yourself about what's going on you know, what you're being treated with, how you're being treated, what's going into your body, as well as research the different resources that you can take advantage of” (age 25, M, testicular cancer).

Treatment effects

The next key theme that emerged was “Treatment Effects.” The key subthemes included “Uncertainty, Loss, & Changes in Identity” and “Ups & Downs of Physical Symptoms.” Participants described conflicting emotions, such as “… sometimes I'm angry, sometimes I'm just sad, and sometimes I'm just like you know, who cares it's over—even though I don't feel that way” (age 22, F, Wilms tumor). Participants described changes in their identity pre- and post-cancer diagnosis. Participants described questioning their sense of self, noting that during treatment “… you're gonna get to that point where you're just gonna really doubt yourself, not only if you're gonna live but if you're gonna be able to be the same person afterwards” (age 25, M, testicular cancer). Among the physical symptoms experienced, participants noted nausea and fatigue and its impact on their ability to engage socially with others and to maintain their stamina during lengthy treatments and hospitalizations. Participants shared strategies that they used to manage their physical symptoms, such as bringing aromatherapy to chemotherapy and making a music playlist exactly the length of the radiation session. Participants described changes in body image and feelings of betrayal by their bodies. Participants frequently noted associations between achieving post-treatment medical milestones, such as port removal, and achieving steps toward “normalcy.”

Coping strategies

The next key theme that emerged was coping strategies. The key subthemes that emerged in regards to coping strategies were “Keep busy” and “Keep a positive vibe.” Participants consistently emphasized staying active throughout treatment. Participants discussed about surrounding themselves with people who helped them in “keeping a positive vibe.” Participants offered their insights about what they would recommend as helpful to other young adult cancer patients. Participants described advocacy and involvement in health care decision-making, information seeking, availability and awareness of age appropriate resources, emotional coping and peer support, and practical disease management strategies.

A few participants acknowledged a sense of social isolation despite being physically surrounded by people during treatment. A couple of participants described keeping faith and referred to certain moments in their treatment process as “blessings” or “signs.” During hospitalizations, participants emphasized trying to spend time outside of their rooms. A couple of participants discussed meeting other young adult cancer patients and going on walks together around the hospital. Participants recommended continued involvement in social activities as much as possible throughout treatment. One participant described how “I did my best to continue living life as it was … I still went to you know prom my senior year and I still walked in grad …” (age 21, M, acute lymphoblastic leukemia).

Support resources

The next key theme that emerged was “Support Resources.” The key subtheme that emerged in regards to support resources was “Support needs change over time.” Participants shared system barriers in accessing supportive care resources, such as limited young adult cancer support resources in certain geographic areas and complicated eligibility criteria (Table 3). Participants also described personal barriers, such as anxiety and social stigma, when discussing if they accessed support resources (Table 4). Using comparison of code occurrences from interview transcripts across study time points, there was a greater frequency of code occurrences for personal barriers versus system barriers. All 13 participants described at least one personal barrier in accessing supportive care resources. Eight participants described both personal and system barriers in accessing supportive care resources. Participants specifically noted challenges about being matched with other patients for peer support during treatment in regards to the timing of when it was offered, disinterest in being matched solely by their cancer diagnosis, and emotional distress caused by differences in prognosis and treatment effects.

Table 3.

System Barriers Discussed About Accessing Support Resources

System barriers	Participant quotes
Timing of when resources were offered	“… most of the time it would always fall on my chemo cycles so it's like you just can't go… ” (age 22, F, non-Hodgkin lymphoma)
Lack of awareness	“I just, I wasn't really made aware of very many resources” (age 19, F, Hodgkin lymphoma)
Lack of awareness	“… No they didn't really point me towards anything, I also didn't ask …” (age 22, F, non-Hodgkin lymphoma)
Logistical difficulties	“I don't fit a lot of the criteria for resources for cancer patients. I'm at a weird age. I'm done with treatments” (age 22, F, Wilms tumor)
Logistical difficulties	“I haven't done a lot because I'm not from this area …” (age 22, F, acute lymphoblastic leukemia)
Age gap	“… you know that weird kind of gap between the adult side and the children's side …” (age 25, M, testicular cancer)

Table 4.

Personal Barriers Discussed About Accessing Support Resources

Personal barriers	Participant quotes
Fear and anxiety	“Sometimes the internet can be kind of scary, and there's a lot of opinions and a lot of people …” (age 19, F, Hodgkin lymphoma)
Fear and anxiety	“… I didn't want to associate with people that were doing cancer because it just, it wasn't uplifting for me, it was just a reminder that I'm really sick and I could die …” (age 22, F, Wilms tumor)
Maintenance of identity independent of cancer diagnosis	“… it's kind of weird how like the only connection you have is cancer, you know … I just didn't really like that that much …” (age 22, F, non-Hodgkin lymphoma)
Maintenance of identity independent of cancer diagnosis	“… it's like something I went through but it's not something I want people to like judge me off of, or like categorize me by” (age 19, F, Hodgkin lymphoma)
Perceived that they did not need it at the time	“No that's not something I really need. I don't know, that's just not me, that's not something that weighs on my mind …” (age 23, M, acute myeloid leukemia)
Perceived that they did not need it at the time	“… I personally didn't do as much as I probably should have … I realize now that there's so many opportunities that I could've taken advantage of …” (age 25, M, testicular cancer)
Social stigma	“Some people think it's a weakness, some people like it's those sad Bambi eyes …” (age 19, F, Hodgkin lymphoma)
Social stigma	“… try not to be insecure and feeling like you know you got this mark on you or something …” (age 21, M, acute lymphoblastic leukemia)

During follow-up interviews, some participants who did not feel comfortable, interested, and/or able to participate in support resources during treatment became involved in support resources relevant to their psychosocial needs post-treatment. Among the participants who accessed support resources post-treatment, they described wanting to connect with others with their same cancer diagnosis (such as through a diagnosis specific online support page) and/or seeking to meet other young adult cancer survivors their age (such as through a recreational activity with other young adult cancer survivors). Others described “taking a break” from the cancer community post-treatment. Some participants described a decrease in the availability of resources from during treatment to post-treatment. One participant shared how “Like when you have cancer, there's a ton of resources but once you're done, it's like everyone forgets that you had cancer and you don't know how, you don't know what to do” (age 22, F, Wilms tumor).

Post-treatment experiences

From analysis of the follow-up interviews, the key theme that emerged was “Post-Treatment Experiences.” In follow-up interviews, participants shared new experiences and achievements and ongoing medical and psychosocial challenges. The key subthemes that emerged in regards to post-treatment experiences were “Trying new things to cope with losses” and “Managing expectations with realities.” Participants consistently emphasized looking ahead to the future and trying new things. One participant shared how “… you feel better if you're exposed to newer things, and newer things sort of give you new insights and new experiences that can help you perhaps deal with the recovery …” (age 19, M, Rhabdomyosarcoma). A few participants took trips or participated in new recreational activities upon treatment completion. Other participants continued to struggle with severe physical effects post-treatment and were unable to travel or engage in recreational activities while awaiting further medical procedures.

Participants described a mismatch in how they imagined things would be after completing treatment and the reality of the challenges they continued to face in their daily lives. One participant described how she moved back to college immediately after completing treatment but then had to move back home a couple weeks later due to severe anxiety and panic attacks. She shared how “I think I set my expectations a little bit too high as well … like the day I finish radiation is like the day I'm like completely done with treatment and I'll feel 100% better, it's just not realistic …” (age 19, F, Hodgkin lymphoma). Participants described continued feelings of awkwardness and uncertainty about disclosure of their cancer diagnosis with their peers. Some participants described enhanced perspective about managing everyday stressors and disappointments, such as job loss, saying “I mean I think it's like you know the worst that can possibly happen to you is experiencing near death … it's like what could possibly get worse than that … there'll be more jobs …” (age 27, F, Ewing sarcoma). Participant reflections about their experiences post-treatment were interwoven with hope, loss, anticipation, courage, excitement, uncertainty, and gratitude.

Discussion

Consistent with previous research examining the matching of received social support with the need for support in adjusting to cancer and cancer survivorship,¹⁹ study findings suggest that supportive care needs can change during the transition process from active treatment to survivorship care. During the transition process to survivorship care, young adult cancer survivors are experiencing ongoing treatment effects and changes in their social identity. This can be an opportune time to discuss and offer supportive care resources to assist with social reintegration. Previous research suggests potential barriers and challenges to initiating and sustaining AYA peer support programming such as the diversity of the AYA age range, geographical and financial barriers, a lack of cultural diversity in support group offerings, a lack of awareness and referrals from health care providers, and finding ways to offer support at different phases of the cancer trajectory.²⁰ Participants in this study also described personal barriers, such as age appropriate desires to be treated the same by their peers and to maintain their sense of identity independent of their cancer.

The specificity of the data collection time points used in this study contributes new knowledge about the transition needs of young adult cancer survivors, which is more typically studied using cohort data of AYA cancer survivors spanning a number of years post-treatment. Participants frequently discussed the timing of when support resources were offered in the context of their treatment process. The timing of when supportive care resources are offered appears to be critical, such that if resources are introduced too soon, too late, or during a medically stressful time in the care trajectory, it may increase the likelihood that it will not be well received and may be perceived as an additional burden.

There was variation in regards to participant interest in and involvement with supportive care resources, but there was consistency among participants in regards to their desires to be treated the same by their peers and to stay busy and active during treatment. Participants described watching movies and Netflix shows, listening to music and podcasts, and reading books during hospitalizations. These activities present opportunities to offer psychoeducation, therapeutic support, and to connect with other young adult cancer patients. The advice that participants shared about what they would recommend as helpful to other young adult cancer patients was consistent with the factors identified in Merluzzi et al.'s Cancer Behavior Inventory (version 2.0).²¹ Rapport should be established with the patient to determine appropriate matching and timing of support resources offered. Resources should be accessible, flexible, and age appropriate. Future research can examine the experiences and needs of AYA caregivers during the transition to survivorship care.

Limitations

All participants were recruited from an academic medical center and all participants were English speaking. In regards to the sample size, study participants were engaged in data collection at two time points to enhance credibility and rigor.

Conclusion

All members of the interdisciplinary health care team should focus on building trust and rapport with patients and their caregivers early in the care trajectory to foster dialogue about social interests, needs, and preferences. Social stressors and potential barriers to participation in supportive care services should be discussed openly with patients and caregivers, especially prior to transitions in care. Young adult cancer patients should be provided with clear information and age-appropriate supportive care resources to help them anticipate and manage medical and psychosocial challenges throughout the care trajectory. Providers should recognize that support needs change over time so the introduction of services must be informed by and tailored to the unique needs of each young adult with cancer.

Footnotes

Acknowledgments

The authors would like to thank all participants for sharing their time and experiences. C.W. was supported by an American Cancer Society—Joe & Jessie Crump Foundation Medical Research Fund Training Grant (DSW-16-246-01-SW). J.C.-M. is supported by an American Cancer Society—Joe & Jessie Crump Foundation Medical Research Fund Training Grant (DSW-16-247-01-SW). B.J. is supported by a Palliative Care Research Cooperative Group (PCRC) Pilot Grant. A portion of the study findings was presented at the 2018 Association of Oncology Social Work Conference and the 2018 American Psychosocial Oncology Society Conference.

Author Disclosure Statement

No competing financial interests exist.

References

National Cancer Institute. Closing the gap: research and care imperatives for adolescent and young adults with cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group (NIH Publication No. 06-6067). Bethesda, MD: National Cancer Institute; 2006.

Kent

, Smith

, Keegan

, et al. Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol. 2013; 2(2):44–52.

Cutrona

, Russell

. Type of social support and specific stress: toward a theory of optimal matching. In: Sarason

, Sarason

, Pierce

, Sarason

, Pierce

(Eds). Social support: an interactional view. Oxford: John Wiley & Sons; 1990; pp. 319–66.

Cheung

, Zebrack

. What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer. 2017; 25(1):119–26.

Husson

, Zebrack

, Aguilar

, et al. Cancer in adolescents and young adults: who remains at risk of poor social functioning over time?. Cancer. 2017; 123(14):2743–51.

Tremolada

, Bonichini

, Basso

, Pillon

. Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psychooncology. 2016; 25(12):1408–17.

Wilkins

, D'Agostino

, Penney

, et al. Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer. J Pediatr Hematol Oncol. 2014; 36(7):545–51.

Masterton

, Tariman

. Effective transitional therapy for adolescent and young adult patients with cancer: an integrative literature review. Clin J Oncol Nurs. 2016; 20(4):391–6.

Creswell

, Plano Clark

CVL

. Designing and conducting mixed methods research. Thousand Oaks, CA: SAGE Publications; 2011.

10.

Lazarus

, Folkman

Stress, appraisal, and coping. New York, NY: Springer; 1984.

11.

Lazarus

RS.

Stress and emotion. A new synthesis. London: Free Association Books Ltd.; 1999.

12.

Cutrona

, Russell

. (1990). Type of social support and specific stress: toward a theory of optimal matching. In: Sarason

, Sarason

, Pierce

(Eds), Social support: an interactional view. Oxford: John Wiley & Sons; 1990; pp. 319–66.

13.

Bronfenbrenner

The ecology of human development: experiments by nature and design. Cambridge, MA: Harvard University Press; 1979.

14.

Bronfenbrenner

. Ecological models of human development. In: Postlethwaite

, Huson

(Eds), International encyclopedia of education Vol. 3, 2nd ed. Oxford: Elsevier; 1994; pp. 1643–1647.

15.

Arnett

JJ.

Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol. 2000; 55(5):469–80.

16.

Guest

, MacQueen

, Namey

Applied thematic analysis. Thousand Oaks, CA: Sage Publications; 2012.

17.

Hennink

, Kaiser

, Marconi

. Code saturation versus meaning saturation: how many interviews are enough?. Qual Health Res. 2017; 27(4):591–608.

18.

Tong

, Sainsbury

, Craig

. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007; 19(6):349–57.

19.

Merluzzi

, Philip

, Yang

, Heitzmann

. Matching of received social support with need for support in adjusting to cancer and cancer survivorship. Psychooncology. 2016; 25(6):684–90.

20.

Treadgold

, Kuperberg

. Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. J Clin Oncol. 2010; 28(32):4842–9.

21.

Merluzzi

, Nairn

, Hegde

, et al. Self-efficacy for coping with cancer: revision of the Cancer Behavior Inventory (version 2.0). Psychooncology. 2001; 10(3):206–17.