Co-management of communication and care in adolescent and young adult oncology

Abstract

Background:

Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking.

Methods:

We performed 37 semistructured interviews with AYAs aged 12–24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care.

Results:

We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other’s emotions. Additionally, we identified five factors that influenced AYAs’ roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills.

Conclusions:

AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family’s unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.

1 |. INTRODUCTION

Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Professional guidelines and international conventions call for clinicians to incorporate AYAs in health-related communication.^1–5 The Institute of Medicine identified patient engagement as essential to improving the quality of cancer care.⁶ Furthermore, engagement of AYAs with chronic illness in care is associated with improved quality of life and symptom burden,^7–9 and promotes feelings of empowerment.^10–12 Engaged AYAs report feeling “happy, reassured, and treated as a person with rights,”¹⁰ perceive a higher quality of cancer care,¹³ and report improved self-confidence and independence.^14–16 This engagement also supports the development of autonomy and prepares AYAs for transitions to adult care.^17,18

However, approaches to engaging AYAs must adapt to their developmental level. Furthermore, many AYAs have parents involved in their care, and this important relationship must be considered in engagement strategies. AYAs can differ in their ability to process information, plan ahead, manage information, and manage their emotions.^19–23 Despite a desire for involvement,^24–27 some AYAs with chronic illness worry about the burden of responsibility and difficulties coping without sufficient parental support.¹⁶ Other AYAs defer responsibility or authority to parents based on their perceived abilities and skills.^28–31 AYAs prefer to have care and communication adapted to their individual needs, rather than based on age or other factors,¹¹ and they value choosing their preferred level of involvement.³²

Given this need for tailored engagement of AYAs, it is imperative to understand how AYAs and parents navigate their respective roles in care and communication with clinicians. Also, we must understand the factors that influence which roles the AYA fulfills. We interviewed 37 young AYAs with cancer who were between 12 and 24 years old at diagnosis, which corresponds to the World Health Organization (WHO) definition of “young people,” which overlaps with adolescence and emerging adulthood. We aimed to learn how AYAs and parents shared and delegated roles in communication and care during and after treatment for cancer.

2 |. PATIENTS AND METHODS

We report this study following Consolidated Criteria for Reporting Qualitative Research guidelines³³ (Appendix 1).

2.1 |. Participants and recruitment

We interviewed AYAs with cancer from Washington University School of Medicine (St. Louis, MO) and St. Jude Children’s Research Hospital (Memphis, TN) from July 2020 through May 2021. We stratified sampling based on time point: patients undergoing treatment for at least 1 month (i.e., treatment) versus patients who completed treatment at least 6 months prior (i.e., survivorship). We aimed for at least 15 participants per time point to ensure thematic saturation.³⁴ Eligibility criteria included (1) cancer diagnosis, (2) aged between 12 and 24 years at diagnosis, (3) spoke English, and (4) treated at pediatric facilities. We focused on this age group for two main reasons. First, we felt that NCI categories of AYA (15–39 years) were too broad to be meaningful in this context of communication and care delivery roles. Second, we wanted to ensure we captured the broad array of developmental patterns as these patients underwent cancer treatment. No participants had clinical relationships with the authors. We recruited via telephone and acquired verbal consent. For minors, we obtained parental permission and participant assent. We explained the purpose of this communication study to the participants. Institutional review boards at both sites approved this study. Participants received $40 gift cards.

2.2 |. Data collection

We conducted semistructured interviews via video-conferencing software or telephone. Our interview guide was informed by our previous study of communication with parents in pediatric oncology³⁵ (Appendix 2). This guide explored the roles of AYAs and parents in communication, along with perspectives on good and bad communication, and positive and negative communication experiences. One author (BAS) conducted interviews. He is a pediatric oncologist with qualitative research training. Interviews were audio-recorded and professionally transcribed. To address the potential bias of study team members, BS and MK performed a reflexivity exercise prior to data analysis. During this discussion, each researcher described their lens, past experiences with the topic, and potential biases that they needed to remain aware of during analysis.

2.3 |. Data analysis

We performed thematic analysis,^36,37 coding for both (1) the roles of AYAs and parents in care and communication and (2) factors that seemed to affect the fulfillment of these different roles. Two authors (BAS and MK) developed the codebook by reading all transcripts to sensitize themselves to the content, then reviewing three to five transcripts in iterative cycles and independently developing codes and memos. The authors met to review codes, develop and refine code definitions, and collapse redundant codes (Table 1). After coding 26 transcripts, they reached thematic saturation for roles of AYAs and parents, as well as factors affecting fulfillment of these roles. The same authors then coded all transcripts in Dedoose qualitative software using this finalized codebook. The authors coded three to five transcripts, reviewed others’ application of codes, marked disagreements, and then resolved disagreements through discussion.

TABLE 1.

Codebook for adolescents and young adults (AYAs) and parental roles in communication and care

Communication Function	Definition
Managing information	Information surrounding diagnosis, cancer treatment, and future outcomes can be complex and overwhelming. Parents can contribute to information management by serving as a conduit, buffer, and translator for information exchanged between the clinical team and AYA. They also work to support the AYA’s informational needs by acting as a repository and source of information. AYAs can contribute to information management by taking affirmative roles in information exchange, asking questions, and requesting private time with doctors.
Managing social and emotional needs	AYAs with cancer and their families have many complex social and emotional needs. Parents can act as emotional support and motivation for the AYA by demonstrating caring, providing support, responding to AYA’s emotional cues, providing a sense of normalcy for the AYA, and supporting their own emotional well-being. AYAs contribute to their own social and emotional management by maintaining an optimistic outlook, finding purpose in their diagnosis, and utilizing available supportive resources. Several AYAs also mentioned their role in protecting their parents’ emotions.
Managing health	Parents and AYAs often co-manage various complex health needs of the AYAs throughout their cancer treatment. Parents often fulfill these heath management needs by managing medications and treatments, monitoring the AYAs’ well-being, discussing AYAs’ health needs with the medical team, and providing assistance as AYAs experience debility. AYAs contribute to their health management by creating open channels of communication and collaboration with the clinical team about their symptoms and medical needs.
Advocating and empowering	Being diagnosed with cancer can disempower AYAs and their families, making it difficult for their priorities and needs to be recognized by the clinical team. Parents advocate for the AYA by speaking out on behalf of the AYA, as well as by empowering and encouraging AYAs to advocate for themselves. Some AYAs also practiced self-advocacy, especially related to informational needs.
Making decisions	Families must make many decisions in AYA oncology, including decisions about clinical trials, treatments, symptoms management, and supportive care. Parents often contribute to decision-making by incorporating the needs of the AYA and family unit and communicating medical decisions to the clinical team. Although many AYAs defer this decisional authority to their parents, AYAs can contribute to decisions by asserting their autonomy and incorporating their values into making and expressing decisions for their medical care.
Managing logistics	Cancer care is time-intensive, multidisciplinary, and complex, requiring coordination of medical appointments, transportation, insurance and financial issues, and inpatient hospital care. Parents often oversee the bulk of these logistics, particularly around schedule management, insurance issues, and obtaining medical supplies and prescriptions. AYA sometimes contribute to the logistics of their care by attending and scheduling appointments independently and by communicating their needs directly to the clinical team, though many AYAs rely on their parents for logistical support.

3 |. RESULTS

3.1 |. Participant characteristics

We performed 37 interviews with AYAs ranging in age from 12 to 20 years at diagnosis (mean = 16 years). At the time of interview, participants’ ages ranged from 13 to 25 years (mean = 18 years). Interviews ranged from 21 to 89 min (mean = 43 min). Participants were predominantly White (70%) or Black/African American (22%) (Table 2).

TABLE 2.

Patient characteristics (n = 37)

	n (%)
Gender
Female	19 (51)
Male	18 (49)
Age at diagnosis, mean (SD)	16 (2.2)
Age at interview, mean (SD)	18 (2.9)
13–16 years	11 (30)
17–20 years	20 (54)
21–24 years	5 (14)
Racea
Asian	2 (5)
Black	8 (22)
Pacific Islander	2 (5)
White	26 (70)
Hispanic ethnicity	1 (3)
Diagnosis
CNS tumor	8 (22)
Leukemia	7 (19)
Lymphoma	12 (32)
Solid tumor	10 (27)
Time point
Treatment	19 (51)
Survivorship	18 (49)
Site
St. Louis	19 (51)
Memphis	18 (49)

^aRace and ethnicity were identified by chart review. Racial categories were not mutually exclusive, thus percentages total more than 100%.

Abbreviation: CNS, central nervous system.

3.2 |. AYAs’ and parents’ roles in communication and care

We identified six roles in cancer communication and care that AYAs co-managed with parents (Table 3).

TABLE 3.

Adolescents and young adults (AYAs) and parent roles in communication and care

Role	Excerpt
Managing information  AYAs 36/37  Parents 33/37	AYA  “Treating me, I guess, as an adult was just like really important because I was going through something that made me feel pretty old. [Laughter] I didn’t wanna be treated like a child. I didn’t. I wanted to know what was going on. Talk to me about it” [survivorship, female, 21 years].  “I didn’t really like to ask the doctors questions because they would normally end up answering it to my mom in a way that I didn’t understand ’cause they could use a lot of bigger words. Then when we got home, I would just tell my mom all of my questions, and then she’d go ask the doctor next time we went” [survivorship, male, 18 years].
	Parent  “I’ll ask my mom, ‘Can you ask this for me next time we’re in the clinic?’ She’s like, ‘Sure’” [treatment, female 13 years].  “That was the kinda thing I didn’t really wanna know about and I would rather hear from my mom so I wouldn’t be as sad, I guess. She’s my mom. She’s a parent so she’d be able to make me feel better about it and not make me like I guess be really scared” [survivorship, female, 14 years].  “When it was something that I didn’t understand I’d ask them to explain to mom and mom would explain it to me better” [treatment, male, 17 years].
Managing social and emotional needs  AYA 33/37  Parent 33/37	AYA  “I was hard on myself at first about it because I knew that there was the possibility that I could not beat it and I was thinking about all the negatives. I guess try to keep them more on the positive side versus thinking about all the negatives” [treatment, male, 17 years].  “That’s what helped me get through it. Keeping goals in my… you have a long-term goal, a short-term goal, and then maybe a day-to-day goal. Maybe one day chemo beat the crap out of you. Maybe that next day, if you get the same treatment, try and walk around in your room or something” [survivorship, male, 18 years].  “Try to keep in contact with all your friends, and make sure that you’re not really forgetting anything. Try to keep it as normal as possible; otherwise, it won’t really feel normal” [survivorship, female, 14 years].
	Parent  “I know it’s hard to raise a child with cancer. They’re going through all these different emotions and stuff… Try to keep their spirit up. Do something. Do something to boost their mood or something like that. Don’t just sit around and just be sad because it’s gonna mess their mood up, and that’s not good” [survivorship, female, 18 years].  “Just as long as parents are intentional about checking in with their kids about how they’re feeling about it, that makes them feel really supported and cared for and secure” [survivorship, female 21 years].  “If you’re frustrated and annoyed, don’t stay in that room with the kid. I think that means you need to take time for yourself. Go, do something and release that negative energy because it impacts your kid” [survivorship, female, 21 years].
Managing health  AYA 21/37  Parent 16/37	AYA  “I would also say–this one’s hard because I want to say don’t second guess your body. If my stomach’s hurting or something, don’t dumb it down. Don’t think, “Oh [interviewee], it’s just stomachache, you’re fine. It’s nothing serious”… Reach out. Reach out and tell your doctor” [survivorship, female, 14 years].
	Parent  “My mom would help make sure that I got all my medications. There was a period in chemo where I had to take 15 pills in the morning… or 12 pills in the morning and 15 at night. It was a pain to keep up with them. She helped me make sure that I was taking them and that I didn’t run out of them” [survivorship, female, 18 years].  “I would definitely tell the parents to talk to the child’s doctor about what the plan is and how long their treatment’s gonna last and the symptoms to look out for just in case and what to do in case they do experience those symptoms” [survivorship, male, 25 years].
Advocating and empowering  AYA 15/37  Parent 19/37	AYA  “Just advocating for yourself and asking for things that don’t second guess yourself. I think that happens a lot in women, especially. We tend to doubt our desires, our needs, and our wants and wonder if we’re being too pushy or too much, too whiny. Yeah, so I think advocating for yourself is huge” [survivorship, female, 21 years].  “Do not be afraid to speak up, even if you might have concerns about feeling embarrassed that, oh, maybe this is something that I should already be familiar with, or maybe it ends up being a simple question that you, again, weren’t familiar with. It’s better to ask more questions than less, and to feel entitled to having your questions answered” [treatment, female, 18 years].
	Parent  “I think vouching, advocating for your child. My mom, she could tell I would hold back sometimes, so she would be like, you need to get her medicine. She is in pain. She’s been in pain for hours. I think having someone when you’re so tired and don’t wanna vouch for yourself, having someone there to advocate for you. Stand up for you” [survivorship, female, 21 years].  “I think that’s really important just for you to try and be understanding and not really forceful, so understanding if they don’t really wanna go to anything just because they’re feeling sick. My mom was very helpful with that because she never forced me to do anything if I was not feeling up to it” [survivorship, female, 14 years].
Making decisions  AYA 10/37  Parent 9/37	AYA  “Interviewer”: How do you guys as a family approach decisions when they come up? “Interviewee: I wouldn’t say a family vote, but we discuss it. We discuss logistics and what’s the best way to go” [treatment, male, 18 years].
	Parent  “I think [my mom] just supported me after I made the decision ’cause I don’t even think we talked about it much. She was just like, ‘Yeah, it sounds like a good idea.’”[survivorship, female, 23 years].
Managing logistics  AYA 8/37  Parent 9/37	AYA  “We’re always tryin’ to plan, figure out what time we’re gonna get out [of the clinic] ‘cause if my parents have work or if I wanna get to school by a a certain time or if I needed to tell a teacher when I’m gonna get back, I won’t know… It’s just hard to predict when we’re gonna get out of the hospital” [treatment, male, 17 years].
	Parent  “It’s nice to have my parents there as support and obviously deal with when we’re actually going to the pharmacy and stuff, that’s all insurance stuff that I can’t take care of ‘cause I’m not on my own insurance” [treatment, male, 18 years].

3.3 |. Managing information

AYAs described their role in managing information in 36 of 37 interviews, and they described parental roles in 33 of 37 interviews. Some AYAs took affirmative roles to ensure they received all pertinent information from clinicians, while others described passive roles. Yet, most AYAs described collaborating with their parents as a unit to manage information: “Me and mom kept a legal pad of questions. We would ask them, so we wouldn’t forget. It always helped me to feel better about what was going on” [treatment, female, 13 years]. Over time, AYAs tended to take more affirmative roles.

Parents fulfilled several roles in helping AYAs to manage information, including information conduit, buffer, and translator. Parents served as a conduit by asking questions that AYAs were uncomfortable asking of clinicians, or passing information from clinicians to AYAs. Parents buffered distressing news by softening language or breaking news over time. Parents also translated information between clinicians and the AYA, ensuring that both sides were understood.

3.4 |. Managing social and emotional needs

AYAs described their role in managing social and emotional needs in 33 of 37 interviews, and they described parental roles in 33 of 37 interviews. Several AYAs described their efforts to maintain a hopeful mindset by finding purpose and thinking positively. Others set specific goals to maintain this positive mindset, focusing on short-term and long-term goals. Some AYAs also described the importance of maintaining connections with friends and striving to maintain some feeling of normality in an abnormal situation. Lastly, several AYAs described their role in protecting their parents’ emotions: “I was trying to be strong for [mom]. I could tell that she wasn’t really herself and was feeling kinda sad, but I could also tell that she was trying her hardest to be happy, and so that I wouldn’t be sad. At the same time, I was doing the same thing for her” [survivorship, female, 14 years].

Parents served as emotional supporters and boosters for AYAs. Providing this support required parents to be attentive to the AYA’s emotional cues. Some AYAs emphasized the need for parents to treat them normally, despite their diagnosis. To provide this support, many AYAs highlighted the importance of parents being strong and remaining positive: “It’s really easy to get overwhelmed sometimes, but just to be there strong for them just so that child can have reassurance” [survivor, male 21 years]. Others experienced distress at seeing their parents’ distress: “Don’t be a mess in front of ’em. ’Cause my only experience with my mom is that she gets super upset, and she’ll cry. It’s no one’s fault, but it’s hard to see” [treatment, male, 17 years]. To maintain this strength, AYAs described how parents needed to attend to their own emotional well-being and practice self-care.

3.5 |. Managing health

AYAs described their role in managing health in 21 of 37 interviews, and they described parental roles in 16 of 37 interviews. AYA’s roles focused predominantly on cooperating and collaborating with clinicians and parents in adhering to treatments. AYAs also reported their symptoms and concerns to clinicians and parents: “I guess to be very communicative. Always tell the truth about how you’re feeling… That way you know what to do and you know what you can do, what they recommend you to do in order to survive” [treatment, male, 17 years].

Parents managed the AYA’s health by monitoring for symptoms and ensuring that symptoms were mentioned to the clinical team: “My parents are usually the ones to bring up any kind of physical thing I’ve mentioned to them” [treatment, female, 18 years]. Parents also played a central role in managing medications and ensuring that AYAs took all prescribed treatments, as well as managing symptoms and side effects at home.

3.6 |. Advocating and empowering

AYAs described their role in advocating with clinicians in 15 of 37 interviews, and they described parental roles in 19 of 37 interviews. To self-advocate, AYAs described the need to take themselves and their concerns seriously as a prerequisite for self-advocacy. Advocacy predominantly focused on seeking information and asking questions, including repeating questions over time when answers were insufficient: “If you have a question, ask it. Don’t be afraid to ask a question, even if it sounds dumb. Don’t be afraid to ask the same question. Word it differently or ask it multiple times” [survivorship, female, 18 years]. Some AYAs, however, described the importance of having parents ask questions on their behalf if they did not feel comfortable or confident: “I guess it would be better for you to ask things you’re nervous about or ask your parents or somebody else to ask for you” [treatment, female, 20 years]. For younger patients, almost all mentions of self-advocacy related to asking questions. Older patients also described the need to take themselves seriously and advocate for their needs: “I also think advocating for yourself and your needs. There were so many times, again, I did not get my medicine on time. I was in complete pain” [survivorship, male, 21 years].

Parental roles in advocacy focused on advocating for the AYAs and empowering them to self-advocate. While parents played a role in acquiring information and asking questions, AYAs also emphasized the parental role in getting the child necessary care. Older AYAs emphasized the importance of parents showing confidence in their children and supporting the child’s growth and responsibility. Parents empowered AYAs by listening to them and encouraging the child to advocate for themselves while respecting the child’s boundaries. By listening to their child, parents could understand the AYA’s perspective and respect the AYA’s preferences. Additionally, AYAs identified the parent’s role in helping the AYA to develop autonomy over time: “They’re becoming an adult, so allow them to make certain decisions and to grow into an adult and be an adult in that situation” [survivorship, male, 22 years]. Although necessary, this transition was also challenging for some AYAs: “I have grown up my parents doing a lot for me. Now it’s like I… they’ve stepped back and have let me start doing it on my own. It’s been interesting… I just have to be more responsible and keep up a little more with my own stuff” [treatment, female, 19 years].

3.7 |. Making decisions

AYAs described their role in making decisions in 10 of 37 interviews, and they described parental roles in nine of 37 interviews. Almost all mention of decisions came from AYAs who were older than 18 years at the time of the interview. Many AYAs felt they did not have many decisions to make because physicians often identified one treatment that was the standard or “the best.” When AYAs were involved in decisions, most AYAs seemed to rely on their parents to provide input or make decisions on their behalf: “I know I had to say yes or no, but I think I leaned on [parents] a lot for what they thought I should do” [treatment, female, 20 years]. As a result, parents often bore much of the responsibility for making decisions: “I told her what I was thinking, and I said, ‘Mama, it’s your decision. If you want me to do the study, then yes, but if you want me to do like the regular treatment, then yes, it’s fine” [survivorship, female, 18 years]. For AYAs who played more active roles in decision-making, parents provided support and affirmation.

3.8 |. Managing logistics

AYAs described their role in managing logistics in eight of 37 interviews, and they described parental roles in nine of 37 interviews. Almost all mentions of managing logistics came from AYAs older than 18 years at the time of the interview. AYAs deferred most logistical management to their parents. A few AYAs described reviewing labs and scheduling appointments: “When I turned [age], they had me sign some paperwork, and I made my own [electronic portal] account. I’ve, honestly, really enjoyed it because it let me not only go back and see previous blood works and stuff like that, but I can request certain appointments” [survivorship, female, 18 years]. AYAs also described how they expected to take on more responsibility in the future.

Parents often managed tasks such as scheduling, monitoring results, managing financial and insurance paperwork, and transportation to appointments: “I have grown up my parents doing a lot for me. Now it’s like I… they’ve stepped back and have let me start doing it on my own… Not necessarily harder but just more challenging. I just have to be more responsible and keep up a little more with my own stuff” [treatment, female, 19 years].

3.9 |. Contributors to determining AYA’s and parents’ roles

AYAs described five factors that influenced their roles in communication and care (Table 4). AYAs described how their agency and self-advocacy supported their involvement in care and communication. This agency is most commonly related to information exchange, with AYAs telling the clinical team how they prefer to receive information or asking specific questions. Clinicians also encouraged some AYAs to become more involved in communication by asking for preferences, encouraging questions, and directly involving the AYA in conversations. AYAs also described factors that contributed to poor involvement. Many AYAs described how their emotional distress and physical debility impeded their involvement, especially early after diagnosis. This physical debility could result from the symptoms and side effects of the disease itself, medications and chemotherapy, or surgeries. Some AYAs preferred not to engage with the clinician because they were shy, they perceived the involvement as burdensome, or they did not perceive the interactions to be useful. AYAs also described how their perceived insights and skills affected their involvement in different aspects of their care. For example, AYAs had greater insights into their symptoms or experience of disease, whereas their parents were better at managing logistics.

TABLE 4.

Factors affecting AYA fulfillment of communication and care roles

Factor	Excerpt
AYA agency	“We told the doctor, ‘I don’t want you to be just sweet and don’t want to tell me everything. I want to know everything even if it’s gonna make me sad’” [treatment, female, 20 years]. “I think taking yourself seriously and reaching out for help when you’re concerned, when you’re curious, when you’re just curious. Yeah. Which is like advocating for yourself” [survivorship, female, 21 years].
Clinician encouragement	“They were very clear that if I had any questions, I could ask them” [survivorship, female, 23 years]. “I like that they talk to me instead of my mom all the time. Just made me feel like I’m not the third person… Like I was an important part of the conversation” [survivorship, female, 14 years].
Emotional and physical well-being	“A lot of times, I’d be drugged up, so I don’t know if they were talkin’ to me or not, or something like that, but I’d just be nodding my head” [survivorship, male, 15 years]. “They told my mama childhood, but I didn’t hear childhood. I just heard cancer, but I guess that was how scared how I was. I thought I was gonna die, so I just wanted to talk to my mom” [survivorship, female, 18 years].
Personality, preferences, and values	“Honestly, I don’t think I really played any role [in decisions]… That was cool with me, honestly. That’s what I wanted to happen ’cause I didn’t wanna–’cause I was thinkin’ I’m gonna have to go and research all this stuff ’cause I don’t even know what to pick. My mom was already doing that” [survivorship, female, 18 years]. “I’m not a questions type of person. I’m just take what I’m given and move on” [treatment, female, 15 years]. “I zoned out. I was thinking on my own trying to change the subject in my head so I didn’t have to think about it or start crying in front of the doctor and everything” [survivorship, female, 14 years].
Insights and skills	“Interviewer”: What went into that decision of sharing [medical record access] with your parents? “Interviewee: ’Cause I’m not very good at remembering things. If doctors or nurses–if there was an appointment where one of my parents couldn’t be at, then I would want them to be able to go back and ask questions and get information if I forgot something that I was told” [treatment, female, 19 years]. “If they’re asking me about if I’ve been drinking water and bowel movements and eating, that’s usually personal stuff so I’ll have better tabs than my parents will. If it’s something about medications, sometimes they’ll ask a coordinated, both of us but it’s a lot more me I would say” [treatment, male, 18 years].

4 |. DISCUSSION

We identified six different roles in communication and care that AYAs and parents co-manage. We also found five factors that influenced how AYAs fulfilled these roles. Within these roles, AYAs varied significantly in how they preferred to share responsibility with their parents. For example, nearly all AYAs described their role in managing information, yet some AYAs preferred active roles while others preferred passive roles. Additionally, many AYAs described utilizing their parents as a buffer for distressing information, translator for complicated information, conduit for questions, and repository of information outside of clinical visits. Similar to our prior analysis, AYAs prefer to be involved in managing information, but this involvement can take many forms.³⁸ In keeping with other literature, this preference seemed to evolve over time as AYAs transitioned from the initial emotional turmoil of being diagnosed with cancer.^26,27,32 Clinicians should be nuanced in their approach to engaging AYAs in conversations by exploring preferences, appreciating the parental roles, and reassessing information needs and preferences over time.

AYAs were more uniform in their desire for parental support in managing health and logistics. Although AYAs do not want to be excluded, they often rely on their parents to manage their disease and care. AYAs described roles primarily as complying or collaborating, whereas parents often took more active roles. Notably, almost all AYAs who discussed managing logistics were older than 18 years, suggesting that older patients are more aware of the logistical challenges faced by their parents, or they played a greater role in managing logistics themselves. Parents observed for subtle changes in their clinical status, ensured medications were taken as prescribed and managed acute illnesses at home. Parents also managed logistics, such as scheduling appointments, completing paperwork, navigating insurance coverage, and providing transportation. Some of these tasks will inherently remain the parental responsibility for many AYAs, such as managing insurance and financial issues. However, AYAs might benefit from support and encouragement to take increased responsibility for their health, especially in survivorship. The Pediatric Self-Management Model³⁹ indicates that disease and treatment knowledge, self-efficacy, and adaptive health beliefs contribute to enhanced self-management and improve clinical outcomes for adolescents with chronic illness. Clinicians might support AYA self-management by ensuring they are informed and engaged in conversations, empowering them to make personal decisions and manage their medications, and by working with parents to identify self-management goals that are appropriate for that unique family. Furthermore, the enactment of the 21st Century Cures Act creates an opportunity to leverage electronic health record (EHR) portals to support engagement in care and communication for adolescents with cancer and their parents.⁴⁰ This act mandates that healthcare organizations provide EHR access to patients in accessible platforms, including to adolescents. This new access creates opportunities to leverage EHR portals to enhance the engagement of adolescents in their care and communication.

When addressing the emotional turmoil of having cancer, AYAs described a mutually supportive relationship with their parents. AYAs explained how they tried to “stay strong” to protect their parents. Similarly, AYAs described the importance of their parents “staying strong,” because it distressed them to witness their parents become upset. AYAs looked to their parents for support, stability, and security. These shared protective roles are similar to the mutual pretense previously described in pediatric cancer. Mutual pretense exists when families are facing difficult reality, parents understand the reality, the child understands the reality, and both parties recognize that the other party also recognizes the reality, yet they do not openly acknowledge this reality to each other.^41,42 As described by Bluebond-Langner, mutual pretense “can become the dominant mode of interaction between parents and ill children, especially as the disease progresses and a child’s condition deteriorates.”⁴² Depending on the family and the clinical situation, this mutual emotional protection could be supportive or harmful.^41,42 In these situations, clinicians might engage psychosocial professionals to engage the family and ensure parents and AYAs receive the emotional support and resources they need.

This study should be interpreted in light of limitations. AYAs were predominantly White or Black/African Americans. Hispanic adolescents were especially underrepresented. We recruited from two pediatric cancer centers and most participants were under 20 years of age. Thus, our findings do not represent the experiences of older AYAs treated at adult facilities. AYAs might have been affected by recall bias, conformity bias, or social desirability bias in their responses. Furthermore, we gleaned parental roles from the perspectives of AYAs, rather than from parents themselves. Future studies aim for increased geographic diversity, purposively sample for diverse representation, and engage emerging adults.

5 |. CONCLUSION

Interviews with AYAs identified six six roles in care and communication that they co-manage with their parents. Additionally, they described five factors that influenced their involvement in these roles. AYAs have nuanced preferences for how they are involved in these varied roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets that unique family’s needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.

Abbreviations:

AYA

adolescent and young adult

WHO

World Health Organization

DATA AVAILABILITY STATEMENT

Data are available on request from the authors.