Abstract
Purpose:
Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs.
Methods:
A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes.
Results:
Themes showed that (1) cancer responsibilities were initially assumed “naturally” by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs.
Discussion:
Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions.
Introduction
A cancer diagnosis brings about unique challenges for adolescents and young adults (AYAs) and their caregivers. 1 Families must quickly adapt to complex cancer treatments, all while attempting to maintain an AYA’s developmental momentum with goals such as greater autonomy. 2 Effective cancer self-management requires developing the knowledge, skills, and willingness to navigate the health system, communicate with providers, attend frequent appointments, monitor and cope with symptoms, and adhere to home therapies (e.g., medications).3–6 Self-management can improve cancer outcomes by promoting treatment adherence and building an individual’s capacity to navigate the medical system and solve problems. 7 Yet, how AYAs achieve greater involvement in self-managing their cancer care with time (as opposed to relying solely on caregivers), and whether such involvement is perceived as beneficial, remains relatively unexplored. Using qualitative methods with AYA-caregiver dyads, this study investigated perceptions of actively involving AYAs in cancer responsibilities (e.g., remembering their own medications).
In pediatric cancer settings, medical responsibilities are often shared between patients and caregivers (typically parents).8–10 Ideally, there is a developmentally appropriate progression in AYA independence over time.11,12 Empowering AYAs to be involved in cancer care could send the message that their voice is important, offer opportunities for supervised practice of self-management behaviors that are needed on cancer therapy and into survivorship, and set the expectation for increased medical participation over time.10,13–15 However, AYAs with cancer often experience hindered independence9,16 and suboptimal treatment adherence.17,18 A Children’s Oncology Group Study found that 42% of children and AYAs had oral chemotherapy adherence rates below a critical threshold (<95%), conferring a 2.5-fold higher relapse risk. 17 In the same study, AYAs had lower adherence than younger children. We previously showed that AYAs do not universally embrace cancer responsibilities (e.g., 73% relied on their caregivers to manage their cancer medications). 8 However, this study did not assess the reasons why AYAs were less responsible. Understanding the factors that shift AYAs to be more active and engaged in their cancer self-management could represent important but unexplored targets for effective adherence interventions during cancer and in survivorship. 19
In other AYA disease populations, greater disease responsibility has been associated with demographic (e.g., older age/developmental level), neurocognitive (e.g., fewer executive function problems), psychosocial (e.g., greater disease knowledge), and caregiver/family factors (e.g., lower stress).12,20–22 Reed-Knight and colleagues proposed a developmental systems model for conceptualizing how these individual and family influences impact the transfer of medical responsibilities from caregiver to AYA, from early adolescence to emerging adulthood across medical diagnoses. 11 Self-management theories also highlight interconnected individual, family, community, and health system influences that can impact self-management processes (including the allocation of treatment responsibilities within families) and ultimately adherence and outcomes.3,5 Given the limited research on this topic in cancer, it is also possible that decisions about AYA-caregiver division of cancer responsibilities may be impacted by other unique factors. For example, families may perceive cancer demands as acute and temporary, rather than chronic, and requiring lifelong skills into survivorship; fluctuating physical symptoms may pose barriers to uninterrupted AYA independence; and cancer treatment is phasic potentially requiring realignments in responsibilities over time.
To promote active roles in self-management, family-based research is needed to understand the factors that promote an AYA’s readiness and willingness to assume cancer management responsibilities alongside their caregivers. The objective of this study was to explore AYA-caregiver dyads’ perceptions of AYA responsibility with cancer tasks during early adolescence, adolescence, and young adulthood, as well as plans for transferring medical responsibilities from caregivers to AYAs in the future.
Methods
Sample
This study, called “I-CAN” (AYA
Procedures
Participants were recruited by phone or in-person during oncology clinic visits for this institutional review board-approved study. Following informed consent and assent (AYAs <18 years old) and the completion of a demographic survey via REDCap, we conducted a one-time, semi-structured interview jointly with the dyad. Interviews occurred either in-person in the outpatient setting or via Microsoft teams. Dyads completed interviews until we reached data redundancy and saturation (no new themes) 24 within each age cohort, resulting in 30 total interviews. Interviews were audio-recorded, professionally transcribed, and uploaded to Dedoose software. EHRs were also reviewed. AYAs and their caregivers each received $25.
Measures
Demographic and disease factors
AYAs and caregivers separately self-reported their sex, gender, age, race, and ethnicity. Caregivers also reported on annual family income, family composition, and the degree of financial stress and unexpected out-of-pocket medical expenses. 25 EHR reviews were conducted to identify and code present diagnosis (leukemia/lymphoma, solid tumor, brain tumor), present treatment (chemotherapy and/or radiation), days since initial cancer diagnosis, age at diagnosis, and primary health insurance (public/private).
Semistructured interview
The interview guide contained three parts (see Supplementary File S1 for the full guide). The first section included questions about the present allocation of cancer responsibilities within the family, including whether the caregiver, AYA, or both were responsible for tasks such as daily medications and remembering/attending appointments. Second, we inquired about how cancer responsibilities came to be divided this way. This included probes for contextual factors that were identified in the guiding self-management models.3,5,11 Third, dyads were prompted to Identify one medical responsibility that is presently managed by caregiver(s) but for which [patient’s name] will have to take responsibility in the future (either during or after cancer treatment). After agreeing on a task, dyads were prompted to discuss privately (the interviewer left the physical room or turned off the microphone/camera) how this responsibility could transfer. This task was adopted from studies by Holmbeck and colleagues26,27 that used the same prompts to engage adolescents with spina bifida and caregivers in a self-management interaction.
Analyses
Descriptive statistics were used to describe sample demographic and disease characteristics. We also quantified the frequency and percent of AYAs identified as primarily responsible for different cancer responsibilities and the different tasks selected by dyads as priorities to transfer to AYAs in the future.
Qualitatively, directed content analysis 28 was used to identify and organize relevant themes emerging throughout the dyadic interviews. Because there is a rich theoretical and empirical literature on the transfer of disease responsibilities among AYAs with various chronic health conditions (but limited focus on cancer), directed content analysis was selected because it allows qualitative data to support and extend existing theory. By this process, codes were derived from guiding self-management theories, including the adolescent medical transition framework by Reed and colleagues 11 and the pediatric self-management model. 3 Three transcripts were read and discussed by a team of coders. Twenty-six, theory-based codes emerged (e.g., beliefs, family communication) that were independently assigned to a sample transcript. We then created coding definitions and developed a codebook, which were reviewed and agreed upon by the research team. Two independent coders trained by the first author A.M.P. (a clinical psychologist with formal training in qualitative and mixed-methods analysis) coded each of the 30 transcripts. Coders compared their codes, resolved any discrepancies to reach full agreement, and then, the team met again to identify and agree upon overarching themes.
Results
See Table 1 for demographic/disease characteristics for the 30 AYAs and 30 caregivers who completed the study. The average age of AYA was 14.5 years, with 50% of AYAs identifying as female. A third (33%) of AYAs identified as Hispanic, and 23% identified as black. Cancer types included lymphoma or leukemia (40%), solid tumors (40%), and brain tumors (20%). Most caregivers were mothers (63%).
Demographic and Disease/Treatment Information
AYA report.
electronic health record review.
caregiver report.
Large SD as a small group had experienced a relapse or a brain tumor on prolonged oral chemotherapy.
AYA, adolescents and young adult; SD, standard deviation.
Present allocation of treatment responsibilities
All dyads (100%) self-reported that the following tasks were part of the AYA’s present cancer regimen: daily medications, remembering and attending medical appointments, monitoring/coping with symptoms and side effects, and communicating about cancer. Most were also prescribed as needed medications (97%). Nearly half self-reported nutrition (40%) and exercise (47%) regimens. Figures 1-4 depict who was responsible for these different tasks across the full sample and by age cohort. Older AYAs tended to assume more personal responsibility across tasks, although in some cases (e.g., appointments), caregivers continued to share responsibilities with young adults.

Legend. Full sample (n = 30 dyads): Identifying caregiver, shared, and AYA cancer responsibilities.

Legend. Early adolescent sample (n = 11 dyads): Identifying caregiver, shared, and AYA cancer responsibilities.

Legend. Adolescent sample (n = 10 dyads): Identifying caregiver, shared, and AYA cancer responsibilities.

Legend. Young adult sample (n = 9 dyads): Identifying caregiver, shared, and AYA cancer responsibilities.
Qualitative themes
Theme 1. Cancer responsibilities were initially assumed naturally
The first theme that emerged within the interviews was that cancer responsibilities were thought to be assigned “naturally” without discussion, typically by mothers who had been responsible for other caregiving/household tasks before the AYA’s cancer diagnosis. As a caregiver of a 14-year-old AYA stated: I think everybody just slid into their roles. Some caregivers reflected on private conversations about sharing tasks with another caregiver, such as a spouse; however, AYA-caregiver dyads described limited direct conversation with one another (e.g., an 18-year-old: Did we have a conversation? It was just understood, you better take your medication). Indeed, some dyads reflected that this was the first time they had ever been asked to discuss this topic together. Dyads could not recall a specific conversation from the clinical team about gradually involving the AYAs in aspects of their own cancer care.
Theme 2. AYA factors
The second theme that emerged was that AYA factors were perceived to impact their degree of involvement with cancer care (see Table 2 for a list of perceived barriers and facilitators). Age and developmental status were driving forces, with older AYAs and/or those who were perceived as “mature” for their age being more involved in cancer tasks. Fluctuating symptoms/side effects were also barriers or momentary interruptions to AYA medical independence (e.g., from an 18-year-old: lack of motivation from just feeling sick and wanting to sleep all day—obviously, [my mother] took the role of medicine because I wasn’t going to). Another contributing factor was the AYA’s willingness to take on cancer responsibilities. Some expressed that they were ready and willing to learn more about their regimen so they would be more prepared for the future and to alleviate a perceived burden from their caregiver. Others were less interested (e.g., I choose not to be involved with a lot of things), describing limited confidence in their own self-management abilities, feeling too shy to speak/advocate to doctors, and/or an appreciation that tasks were getting done for them.
Perceived Facilitators and Barriers to AYA Involvement with Cancer Responsibilities
One AYA who identified as black reflected on how an experience of racism in the health system compromised the interest and willingness to engage actively with cancer care.
Theme 3. Caregiver factors
The third theme was that caregiver factors relate to AYA responsibility with cancer tasks (Table 2). Existing knowledge/skills about cancer/cancer treatments were viewed as important; since many caregivers had already been managing cancer tasks, they were more knowledgeable than the AYAs and perceived as better equipped to manage the regimen. Caregiver beliefs were also salient in decisions about involving the AYAs in their cancer care. Some caregivers described a trade-off belief that involving AYAs in care tasks would result in less time to focus on “normal” life (this was especially true in the youngest cohort). Other caregivers, particularly of older AYAs, believed that involving the AYA in their cancer care would better prepare them for life after cancer. Caregiver anxiety was also a contributing factor. Some felt that managing the AYAs’ cancer care helped them cope with their own distress/anxiety because it provided something actionable that they could do to support the patient. Caregivers also described concern that critical treatments would not be followed unless they managed the task themselves (e.g., You can't really mess up chemo, you know? You don't want to take the wrong amount… I feel like it is important for me to do it at this point).
While we probed for other determinants of transferring medical responsibilities from caregiver to AYA at the level of the clinician (e.g., communication style) and health system (e.g., insurance), dyads indicated that the immediate family context was the most important. However, of note, an AYAs who identified as black described an experience of racism in the health system that contributed to their decision to engage less with their care.
Theme 4: Reconceptualizing cancer responsibilities as teachable moments
Within the fourth theme, dyads reflected how over time (with AYA age, longer time on treatment, and milestones such as attending college), there was greater consensus that the AYA’s involvement in care was important (e.g., On her 20th birthday, I started telling her that she needed to start scheduling her own appointments and doing her own medication… She had to take on more responsibility, because legally speaking, they didn't have to talk to me). While cancer responsibilities were primarily viewed as acute, caregiver-directed tasks at the initiation of treatment, these responsibilities were later reconceptualized as teachable opportunities to prepare AYAs for adulthood and enable other life goals. As one caregiver stated: It will prepare her to be independent as she becomes an adult, which is huge. That is, among AYAs who became more independent with their care, the “trade off” between cancer responsibilities and living a normal life was less striking. Take, for example, this dyadic interaction between a caregiver and the 20-year-old AYA: You’re on the campus, you’re there by yourself. You are grown. Nobody is going to be there to say take your meds … I knew I was going to do it because I’m getting older, and I have to be responsible for my health.
Theme 5. Need for proactive support with transferring medical responsibilities
When asked to select a medical responsibility that would require transfer from the caregiver to the AYA in the future, most dyads selected managing medications (43%), remembering and scheduling appointments (17%), and communicating about cancer (13%). Of note, two dyads of younger AYAs did not complete the task because their caregivers felt it was unnecessary to select a responsibility that would be transferred in the future. However, other caregivers of early adolescents were surprised but amenable that their child was eager to learn more (e.g., a 10-year-old stated: I think it would be helpful for me if I learn more about helping with the pillbox, so I know where everything is, just in case).
Although most dyads were able to identify a medical task that would need to be transferred from caregivers to AYAs, the fifth and final theme was the need for proactive support about how and when to do so. Generated plans tended to be one-sided (from the perspective of caregivers) and have limited scaffolding about how to break down the task into smaller goals and monitor success over time (see Supplementary File S2 for example plans). A few expressed gratitude for the opportunity to discuss this topic together: I'm glad that you are doing this. There are so many people out there that just need to be taken by the hand and need to know that somebody is willing to help them get prepared (caregiver of an 18-year-old).
Discussion
Advances in cancer treatment, including oral chemotherapies and earlier hospital discharges, have shifted cancer care from an acute, hospital-based model to a chronic disease model. 29 Still, as described by Howell and colleagues (2021), “cancer care lags other chronic conditions in incorporating principles of disease self-management… It is time to shift the care paradigm to ensure patients are supported to be active partners in cancer care and empowered and enabled to manage their disease and health.” 7 Accordingly, this study represents one of the first to explore perceptions, associates, and plans for encouraging greater AYA self-management involvement with cancer care. Understanding these processes may help to improve AYA cancer outcomes by promoting more optimal treatment adherence and enhancing care delivery to match shifting developmental needs.
Consistent with the guiding self-management frameworks3,5,11 and prior literature with cancer10,30,31 and other disease groups,12,13 themes point to the importance of understanding AYA cancer care management within the family context (known as family management).32,33 Interacting AYA and caregiver-level variables contributed to nuanced decisions about whether and how to share or transfer cancer care responsibilities to the AYA, such as age/maturity, time on treatment, developmental milestones such as attending college (although not all AYAs experience these anchoring developmental events during cancer), 34 motivation, knowledge/skills, emotions, beliefs about nonadherence, or “normal life” trade-offs. While many viewed the transfer of responsibility as a positive and important process, others were reticent, reported a sense of losing control, and/or anxiety.35,36
Distinct from other disease populations, AYAs described fluctuating symptoms/side effects as interruptions to their independence with cancer care tasks such as remembering medications. Greater caregiver support was viewed as helpful in these vulnerable moments, but rarely discussed in the literature with other disease populations who may have more stable treatment courses and/or symptomatology. In addition, one AYA from a minoritized racial background reported that an experience of racism in the health system impacted the willingness to actively engage with care. Structural factors, such as racism and other forms of oppression, are notably absent from self-management theories. Finally, many dyads also reported that this interview was the first time that they had been asked to discuss the transfer of medical responsibilities from caregivers to AYAs. This contrasts with other disease groups (e.g., diabetes) in which greater child involvement is encouraged earlier, in the school-aged and early adolescent years, for initiating positive self-management skills and adherence.37,38
Results should be interpreted within the context of study limitations. First, we interviewed a small sample (although consistent with sample sizes needed to reach saturation in qualitative studies) 39 that included only English-speaking participants from one pediatric cancer setting. While the racial/ethnic diversity of our sample was a strength, research is needed with dyads who speak languages other than English and within adult-based cancer settings. Second, our sample was heterogeneous regarding a large age range, cancer type, and time since diagnosis. A one-time interview may not have fully captured all the factors that influence AYA involvement in cancer care tasks across all the developmental stages, cancer diagnoses, and treatment phases. Longitudinal research, using both qualitative and quantitative measures, is needed to track more nuanced changes in self-management responsibilities over time. Finally, while interviewing AYAs and caregivers together allowed us to code dyadic interactions, it may have limited each member’s willingness to be forthright about their perceptions. Our focus on dyads, rather than families, may have precluded a broader assessment of family processes (e.g., family functioning) with all relevant family members (e.g., another parent, siblings). Moreover, we recognize that greater self-management involvement may not be an achievable goal for all AYAs, such as among long-term brain tumor survivors with significant cognitive impairment.
Together, findings point to a potential care gap—a lack of focus on activating AYAs to progressively engage in their care responsibilities with time—despite national guidelines that encourage the use of AYA-specific care tools.40,41 This gap may have implications for adherence and cancer outcomes later, when AYAs suddenly or “naturally” acquire more independence (e.g., with maintenance oral chemotherapies 42 or survivorship care utilization15,43,44) but do not have the prerequisite skills to be adherent. While some caregivers may be inclined to be involved as much as possible (e.g., parent-supervised medication-taking), 45 this may not be consistent with the values, preferences, or lived experiences of all dyads. Novel dyadic interventions progressively targeting self-management behaviors among AYAs are needed. 46 For some, this could begin shortly after diagnosis (depending on age/development, health); for others, this may need to be introduced later. Digital strategies (e.g., apps) could provide this support outside of the busy clinic. 47 Dyadic digital health strategies (as opposed to status quo tools that target one person) 48 may represent a novel avenue for delivering self-management interventions to both members, such as prompts to do their part with comanaging medications.
Footnotes
Acknowledgments
The authors thank the participating AYAs and caregivers. This research was supported through an Institutional Development Fund from the Children’s Hospital of Philadelphia Research Institute, the National Cancer Institute (K08CA241335), and an Institutional Research Grant from the American Cancer Society (IRG-21–144-27) awarded to Alexandra Psihogios, Ph.D.
Authors’ Contributions
A.P.: conceptualization/methodology, formal analysis, investigation, project administration, writing original draft, review and editing, supervision, and funding acquisition. L.S.: formal analysis, investigation, writing original draft, and review and editing. M.M.: formal analysis, investigation, and writing, review and editing. A.A.: formal analysis, investigation, and writing, review and editing. E.M.: formal analysis, investigation, and writing, review and editing. A.S.: formal analysis, investigation, and writing, review and editing. D.T.: formal analysis, investigation, and writing, review and editing. S.C.: writing, review and editing.
Author Disclosure Statement
There are no conflicts of interest to disclose.
Funding Information
No funding was received for this article.
References
Supplementary Material
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