Health Care Transition Readiness in Parents of Adolescent and Young Adult Survivors of Pediatric Cancers: A Mixed Methods Study

Abstract

Purpose:

This study aimed to better understand the phenomenon of health care transition (HCT) readiness in parents of adolescent and young adult (AYA) survivors of pediatric cancers. Specific aims were to (1) quantitatively identify factors that predict HCT readiness of parents of AYA survivors of pediatric cancers; (2) qualitatively explore the past, present, and future roles of parents related to their child’s medical treatment and their potential impact on the parents’ HCT readiness; and (3) integrate the quantitative and qualitative results regarding parental HCT readiness.

Methods:

Parents of AYA survivors were recruited through social media to complete surveys, including the Transition Readiness Index-Parent version (TRI-P), the Perceived Stress Scale (PSS), and the PROMIS Emotional Distress-Anxiety-Short Form 4a (PEDA). Parents who completed the survey were invited to participate in semistructured interviews. Integration of findings happened during interpretation.

Results:

Twenty-two parents completed the survey. Stepwise regression yielded a model including parental perceived stress and AYA age as predictive factors for HCT readiness. Twelve parents participated in semistructured interviews. Emergent themes were uncertainty related to HCT, parent roles during treatment, parent-AYA roles now/future, relationships with providers, and survivors’ mental health challenges. Integrating the results found that most themes aligned with either the TRI-P, PSS, or PEDA, while survivors’ mental health challenges were not reflected in the TRI-P.

Conclusion:

Further study, with a larger, less homogenous sample, could illuminate opportunities for potential interventions to increase HCT readiness for parents of AYA survivors.

Keywords

pediatric cancer survivors parents of cancer survivors health care transition

Introduction

Health care transition (HCT) is defined as “the purposeful, planned movement of adolescents and young adults (AYAs) with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”¹ For the almost half a million U.S. survivors of pediatric cancers,^2,3 successful HCT is essential for overall quality of life and health throughout adulthood⁴ as approximately 80% are likely to experience a disabling or life-threatening condition related to cancer treatments.^5–7

When considering HCT in the medically complex population overall, AYAs, their parents, and health care providers are principal stakeholders,⁸ but most research has focused on the health care providers⁹ or the AYAs.^10,11 Though parents play an influential role,^12–15 they have been largely overlooked.¹⁶ Parents can struggle more with HCT than their AYA children,¹⁵ and because parents have been cited as barriers to HCT,^12,17 further elucidation of parent transition readiness is critical.

Most researchers consider “readiness” for transition essential to HCT success for AYAs. Our knowledge of factors influencing parental readiness is based largely on qualitative studies, though few have focused on needs particular to parents of AYA survivors. Facilitators include coordination and communication between pediatric and adult health systems,^18–26 preparation for HCT guided by the health care team,^20,27,28 and a general acceptance that HCT is a natural step for their child.^21,29–32 Barriers include loss of relationships with pediatric providers and institutions^{15,18,20–23,31–35} and parents’ loss of identity tied to the role of caregiver.^{18,24,28,31,33,36,37} Parents also felt their lack of knowledge about the HCT process and their child’s lack of knowledge to manage their own health were barriers.^{18,20,24,26,27,38} Better understanding of the parental experience of transition preparation could help guide development of interventions to enhance HCT readiness in parents.

The purpose of this study was to better understand HCT readiness in parents of AYA survivors of pediatric cancers. The conceptual framework (Fig. 1) draws from the Social-ecological Model of AYA Readiness for Transition (SMART)⁸ and other literature and posits that factors such as social determinants of health (SDOH), sociodemographics/culture, and medical status/risk influence HCT readiness, which, in turn, affects transition behaviors and, ultimately, health outcomes of the AYA. The study aims were to: (1) quantitatively identify factors that predict HCT readiness of parents of AYA survivors; (2) qualitatively explore the past, present, and future roles of parents related to their child’s treatment and their potential impact on the parents’ HCT readiness; and (3) integrate the quantitative and qualitative results regarding parental HCT readiness.

FIG. 1.

Conceptual framework.

Methods

This cross-sectional study employed a parallel-databases variant of a convergent mixed-methods design³⁹ in which quantitative and qualitative data were collected and analyzed independently and integrated during interpretation. The convergent incorporation of qualitative and quantitative data was intended to provide a more complete representation of the parents’ experience of HCT.

Sample

A convenience sample of parents of AYA survivors of pediatric cancers was recruited. Inclusion criteria were: (1) parents of 16–21-year-old AYA survivors (at least 2 years off treatment) who had not transitioned to adult care, (2) parents who were primary caregivers during active treatment and survivorship of the AYA, and (3) the ability to read and write in English. Excluded were parents whose AYAs were not likely to achieve independence due to neurocognitive deficits as these parents tend to approach HCT differently.⁴⁰

Recruitment

Institutional IRB approval to conduct the study was obtained from Virginia Commonwealth University’s IRB. Recruitment occurred through general and targeted posts on social media (specifically Facebook and LinkedIn), contacts, and cancer support organizations.

Procedure

Potential participants would click on social media links to access study information, the pre-screening questionnaire, and the electronic survey. A process was in place to identify fraudulent responses (see Fig. 2). Survey data were captured in research electronic data capture (REDCap).^41,42 After the survey, participants indicated their willingness to participate in an interview held via Zoom. Team members with expertise in qualitative and mixed methods contributed to developing the qualitative interview. Interviews were conducted by a team member with over 15 years of pediatric hematology/oncology experience and national certification. Once saturation was achieved, no additional interviews were conducted. Participants who completed the survey received $15 Amazon e-gift cards and those who attended interviews received an additional $15 Amazon e-gift card.

FIG. 2.

Fraud reduction and identification strategy. Because social media recruitment and electronic survey links increase the potential for “bot” or fraudulent responses, the research team took measures to prevent and/or identify fraud. The survey included one “hidden” item, visible only to bots, so any response that included an answer to that item was immediately discarded. Because the pre-screening survey had already asked respondents to indicate that their AYA child was at least 2 years off of active treatment, any survey response, which indicated a treatment end date less than 2 years from date of response was excluded, as it likely represented fraud and certainly failed to meet inclusion criteria. Because human respondents spent between 17 and 40 minutes on the survey, any records completed in less than 5 minutes were excluded as fraudulent. Also, records that had identical start and stop times were excluded. Finally, records that included responses that were inconsistent with each other (e.g., amputation as the only treatment modality for leukemia) or nonsensical responses (e.g., radiation as treatment for skin cancer) were eliminated as fraudulent.

Measures

Health care transition readiness

The Transition Readiness Inventory-Parent (TRI-P)⁴³ assessed HCT readiness. In addition to 12 demographic and descriptive items (e.g., gender, race, cancer type), the TRI-P includes 66 Likert-scale items in six subscales: knowledge (19 items), skills/self-efficacy (13 items), beliefs/expectations (12 items), goals/motivation (4 items), relationships/communication (10 items), and psychosocial/emotional (8 items). Scores on each item range from 1 to 5. The total score (not subscale scores) of the 66 items was used to assess HCT readiness. Higher scores indicate increased HCT readiness. AYA’s age and gender were collected as well.

The TRI-P has demonstrated acceptable content validity;⁴³ the reliability and factor analysis have not yet been fully evaluated. Despite these limitations, the TRI-P is the first measure of transition readiness based on a sound theoretical framework: the SMART. The TRI-P is the only known measure for parents, which is not intended as a parent proxy, making it ideal for assessing parental HCT readiness.

Social determinants of health

Six items to measure SDOH came from the Upstream Risks Screening Tool and Guide v 2.6,⁴⁴ the Your Current Life Situation Questionnaire v 2.0,⁴⁵ and the TRI-P.⁴³ Items addressed education access and quality, health care access and quality, and economic stability. Higher scores indicate more risk.

Anxiety

Anxiety was assessed with the PROMIS Emotional Distress-Anxiety-Short Form 4a (PEDA).⁴⁶ This four-item instrument assesses anxiety over the past 7 days, and has demonstrated reliability and validity.^46,47 Raw scores range from 4 to 20. Higher scores indicate higher anxiety.⁴⁸

Stress

Perceived stress over the past month was assessed with the Perceived Stress Scale (PSS).⁴⁹ This 10-item scale has acceptable internal consistency reliability and test-retest reliability.⁵⁰ A total score is calculated. Higher scores indicate higher perceived stress.

Qualitative interview

Interviews followed a semistructured format, with questions derived from themes reported by parents of other medically complex AYA patients.^27,33 Examples of questions include, “Tell me what you know about the process of transitioning your child to adult health care,” and “What do you believe are the most important considerations for parents of cancer survivors as they experience their child’s transition to adulthood?”

Analysis

For aim 1, to identify factors that predict HCT readiness (i.e., TRI-P total score), a stepwise regression building model approach⁵¹ was used to build models predicting HCT readiness with the best subset of predictors from the following variables: time since diagnosis, relationship status of the parent, family income, parents’ perceived stress, and age, gender, and medical status/risk of the AYA. Due to sample homogeneity, neither SDOH nor race/ethnicity were considered. During the first stage, potential predictors were fit individually. During the second stage, all potential predictors with p-values <0.20 were placed into a multiple predictor model. At this stage, variables were eliminated if they did not contribute to statistical significance in line with traditional levels (p < 0.05), and the smaller model was compared with the larger model. Refitting and verifying occurred in an iterative process until it appeared all clinically and/or statistically important variables were included in the model.

To address aim 2, qualitative interviews were recorded and transcribed verbatim. Transcripts and accompanying field notes were analyzed using conventional content analysis at the sentence level.^52,53 The data were read multiple times to achieve immersion and produce codes. One author developed codes, and they were independently reviewed by a second author for consensus. The authors met to review responses and discuss discrepancies, using a constant comparison approach to review codes across responses and make necessary adjustments. Labels for codes emerged, codes were organized into categories, and categories were organized into themes.

For aim 3, the quantitative and qualitative findings were integrated during analysis. Themes that influenced parental readiness for HCT, which emerged from the interviews were examined for congruence or divergence from the results on the TRI-P, PEDA, and PSS.

Results

Quantitative results

One hundred ninety-one surveys were received. Fraud detection eliminated 169 responses (see Fig. 2). Twenty-two participants’ surveys were analyzed. Participants were predominantly female, white, non-Hispanic, and married/partnered (see Table 1). Descriptive statistics for the TRI-P, PEDA, and PSS are in Table 2. The sample’s mean scores for both the PEDA (mean = 9.4) and PSS (mean = 16) were above population means (5.5 and 13.02, respectively).^54,55 The TRI-P total had a Cronbach’s alpha of 0.76.

Table 1.

Sample Demographics

Measure	n	(%)	M	(SD)
Parent
Age			48.9	(5.0)
Gender
Female	19	(86)
Male	3	(14)
Race
White	20	(95)
Black/African American	1	(5)
Did not provide	1	(5)
Relationship Status
Married/in a relationship	17	(77)
Divorced/separated	5	(23)
Household Income
$35,000–$99,999	6	(29)
$100,000–$149,999	7	(33)
$150,000–$199,999	3	(14)
$200,000 or more	5	(24)
Highest level of education
Some high school	1	(5)
Some college, vocational, or training school	2	(9)
Associate degree	6	(27)
4-year college degree	7	(32)
Post-graduate education	6	(27)
AYA
Age			18.9	(1.3)
Gender
Female	13	(59)
Male	9	(41)
Age at diagnosis			8.3	(4.4)
Time since diagnosis (years)			10.6	(4.0)
Time since end of treatment (years)			8.7	(4.1)
Pediatric cancer type
Leukemia/Lymphoma	10	(45)
Solid tumor	8	(36)
Brain tumor	4	(18)
Relapse
No	19	(86)
Yes	3	(14)
Severity of late effects
Minimal	7	(32)
Mild	11	(50)
Moderate	4	(18)
Health insurance provision
Through parents’ employer or school	15	(68)
Medicare or state public assistance program	2	(10)
Other	5	(23)

AYA, adolescent and young adult.

Table 2.

Descriptive Data for TRI-P, PEDA, and PSS

Measure	Mean (SD)	Actual score range	Possible score range	Cronbach’s alpha
TRI-P Total	221 (25.0)	177–280	66–330	0.76
TRI-P Subscales
Knowledge	72.7 (8.3)	53–89	19–95	0.78
Skills/self-efficacy	45.1 (7.3)	33–64	13–65	0.75
Beliefs/expectations	35.4 (6.0)	24–45	12–60	0.51
Goals/motivation	11 (2.9)	7–19	4–20	0.63
Relationships/communication	36.4 (4.6)	28–46	11–55	0.46
Psychosocial/emotional	20.5 (6.4)	8–31	8–40	0.88
PEDA	9.4 (3.6)	4–16	4–20	0.89
PSS	16 (6.9)	4–32	0–40	0.90

PEDA, PROMIS-short form Emotional Distress-Anxiety4a; PSS, Perceived Stress Scale; TRI-P, Transition Readiness Inventory-Parent Version.

Though the small sample size makes any predictive model exploratory, four variables were considered as potential predictors of TRI-P scores based upon individual fit p value <0.2: anxiety (PEDA), stress (PSS), AYA gender, and AYA age. Stepwise regression yielded a final model that included PSS and AYA age as predictive factors. The PSS was the only significant predictor (p = 0.02) of the TRI-P (see Table 3).

Table 3.

Final Regression Model Predicting TRI-P

Variable		β	SE	p value
Constant		121.5	66.1	0.08
PSS Score		−1.7	0.7	0.02
AYA Age		6.7	3.4	0.06
R ²	0.36

AYA, adolescent and young adult; PSS, Perceived Stress Scale; TRI-P, Transition Readiness Index-Parent version.

Qualitative findings

Twelve parents participated in interviews. Five themes emerged: parental uncertainty related to HCT, parent roles during treatment, parent–AYA roles now/future, relationships with providers, and survivors’ mental health challenges (See Table 4).

Table 4.

Qualitative Themes, Codes, and Illustrative Quotations

Theme	Codes	Example quotes
Parental uncertainty related to HCT	No anticipation, preparation, or guidelines for HCT	Parent 3: “I feel like that transition in general, knowing exactly what the next steps are is not clear.”
		Parent 4: “We’re kind of a guinea pig group because a lot of our children--previous generations didn’t make it this long.”
		Parent 8: “There’s not a lot of resources out there on this transition. And there’s not support on moving, you know, to the next step.”
		Parent 12: “Oncology, we just go in. We haven’t really had that conversation [about transitioning to adult care.] . . .They haven’t brought it up and neither have I, ‘cause I don’t want to go anywhere else.”
	Anticipating or feeling that transition was/will be abrupt	Parent 2: “I just don’t know at what point they’re gonna boot us.”
		Parent 10: “So being thrown into the adult world is very scary knowing that they were my safety blanket for eight years now.”
		Parent 12: “He just got kicked out of his primary care.”
	Uncertainty regarding adult providers’ knowledge of survivors’ needs	Parent 2: “People are used to adult cancer treatments. . . I just don’t think people really have any idea how much more intense and debilitating, and life altering the treatments for kids are versus what adults get. . . Even the dentist . . . when I would say, ‘Oh, she’s a childhood cancer survivor, and she had [all these treatments],’ They just kind of look like, ‘Who cares? What does that mean?’ You know, like they didn’t seem to get that it could be contributing to some of these issues with her mouth.”
		Parent 3: “I’m concerned. you know? Is a new general practitioner going to have the background, like, know all the things he’s at risk for? Right now I know his, his pediatrician does. But, gosh! I don’t know what [an adult provider] knows.”
		Parent 6: “I’m scared. I’m really nervous. I feel like they’re not gonna understand how much he truly went through.”
		Parent 11: “To be honest, it is frightening to me a little bit how little non-pediatric oncology environments know about pediatric oncology and the effects. So I’ll keep her at [her pediatric clinic] as long as possible if-if-if, going to her family practice doc, that person doesn’t really seem to understand what the long-term effects of vincristine are, you know.”
	Medical complexity in survivorship	Parent 3: “We ended up with a handful of specialists because of all the things that—all the issues that he had post treatment.”
		Parent 5: “She has a lot of long-term side effects, and they continue to crop up. . . probably seven or eight specialists that we see regularly.”
		Parent 10: “He has so many issues related to treatment . . . and these are lifetime complications. . . There’s nobody—no one specialist that specializes in post-cancer treatment issues, survivorship. So we just go from doctor to doctor with back pain, with bowel problems, with endocrinology problems, with any of it. We feel like we see 15 different doctors. I’m sure it’s not that many, but it feels like it—to try to get answers to problems that I know that are treatment-related.”
	Less support/encouragement of parental involvement in adult care	Parent 3: “He’s signed off some things on at [the children’s hospital] that I’m allowed to like, you know, help him with medical decisions and stuff like that. But like we don’t have that at, at an adult facility. . . You know, they might not let me have access to everything.”
		Parent 5: “Being unaware of what is being said, what she’s saying . . . just outcomes, decisions. It’s gonna be hard to not be a part of that.”
Parent roles during treatment	Parenting and providing type of nursing care	Parent 1: “She came home with an IV for four weeks of antibiotics that I had to switch out at home and stuff.”
	Parent handled everything/in lead	Parent 3: “So I was the person that went to almost every appointment. . . I’m the one that goes . . . I’m the one that helps get his medications and . . . that made sure . . . everything was taken care of.”
		Parent 4: “I was primary caregiver and primary advocate. . . Sometimes I was mama bear, had to be mama bear. I kept track of everything, all the medications, all the side effects, his roadmap, the appointments. I was the primary point person and . . . the historian.”
		Parent 12: “I did everything. All the medical things, all the appointments, everything . . . That was all me. All the time.”
	Parent created/contributed significantly to AYA dependence on parent	Parent 5: “I feel like I maybe have crutched in a lotta ways.”
		Parent 11: “We did a lot of hands-on parenting in a way that kinda undermines some autonomy and development in kids.”
Parent–AYA roles now/future	Parent still in charge of medical interactions and health care navigation	Parent 1: “You know, I still go back with her if they will allow me and if then, if I have a concern that she hasn’t brought up, then I will bring it up.”
		Parent 4: “We [parents] felt like we had no control when our child was diagnosed. . . taking the driver’s seat . . . kind of gave [us] a sense of control.” And “We’ve been making those decisions for them for a very long time.”
		Parent 8: “We filled out the paperwork so that I can still be the primary person taking care of everything. . . I know what needs to be done and I know who to call to get it done.”
	AYA expects/desires parental involvement	Parent 2: “I said, ‘Do you want me to go [with you to your appointment], or would you like to go by yourself?’ And she was like, ‘No, I want you to go.’ She looked at me like I was crazy, but I’m trying to be respectful, you know.”
		Parent 6: “But he still relies-- I need to make all his appointments and, yeah, he still wants Mom to do everything for him. He has the MyChart app. He just called to have me added to it.”
		Parent 8: “[My daughter says] ‘My momager is taking care of everything.’”
	Parent won’t always be around	Parent 4: “I have stressed to him, I’m not going to be around forever.”
	Parent won’t always be around	Parent 6: “[I told him] ‘God forbid if something happened to me, you know, I want you to be well aware that you have to go to the doctor every year. Like if something happens, you-you need to know your body.’”
	Parental worry/fear of potential poor self-management by AYA	Parent 2: “I mean, it’s hard for any parent. But as a cancer parent, you have been so fearful, like, for your kid’s basically surviving. And there is a little bit of, uh, like a fear and a feel of desperation, that if they don’t take care of themselves, they could get sick again and die. You know, there’s that fear.”
		Parent 5: “When we were at her pediatrician appointment for her 16-year-old well check, they asked her to fill out the paperwork. And they were asking very personal questions. And she’s like ‘I’m, like, not ever answering these truthfully.’ . . . and then I had to explain to her why and how important it is. . . I mean it really can really affect her health with all the doctors she sees if they don’t know all the information. And she doesn’t even know all the information. . . It’s unimaginable to just send her somewhere by herself.”
		Parent 6: “I don’t think he’s really ready yet to take control of his health care, if that makes sense.”
	Starting to let AYA take control/shift responsibility	Parent 2: “Now we’re starting to let her take control, but it’s a lot for an 18 year old.”
		Parent 4: “The whole point of us fighting so hard for them to beat cancer was so they could become productive members of society and productive adults. And [other parents] not allowing their kids to do that, it just, it makes me sad again.”
		Parent 11: “We’ve then had to . . . really give her more power to speak for herself again. And that required her stepping up and me stepping back and, um, trusting that process. . . She knows how to come for help when she needs it . . . But it has taken work to get it there.”
	AYA in lead/parent is back up (consultant)	Parent 2: “I think I’m gonna let her kind of drive it and also try to be on the sidelines monitoring as much as I can.”
		Parent 3: “There are times he and I disagree about things . . . and so I’ve got to learn to, like, back off, because if he has a problem, he’s going to speak up . . . Our relationship is pretty good in that way, that he can tell me to back off when I’m being too much of, like, the mom and trying to take things over.”
		Parent 11: “I really wanted her to practice that while we were still very involved so that if that goes wrong . . . we’re right here to help.”
	Parents as teachers	Parent 2: “[One important consideration] is teaching them how to navigate and manage health care systems and insurance systems, because that’s really tricky.”
		Parent 7: “We need to step back and just help guide them. Because right now, if we give ‘em a good foundation to learn and navigate . . . That way they keep an eye out for the long-term effects . . . so they can be their best and biggest advocate.”
		Parent 12: “I think having more conversation around, you know, down the road even when you’re an adult you may experience some of these, um, side effects of all the chemo.”
	AYAs taking control of own care is normal and natural	Parent 3: “I thought he needed to take that medication and he’s like, ‘no, I don’t want to.’ And so I’ve got to learn to back off.”
		Parent 4: “A lot of the moms that I know . . . keep their grasps so hard. And I’m like, ‘No, it’s okay. They’ve made it this far. You’ve done a great job and they’re gonna be okay. It’s gonna be okay.’”
		Parent 9: “The main transition has been in that—and this is why I brought up how bright this kid is. I mean, he’s just—he’s just totally taken it over now, and he owns it.”
	Legal adulthood can happen before AYA is developmentally ready for owning their care	Parent 8: “even though they’re 18, some of them aren’t mature enough to be actually handling their—you know, their own [health care].”
		Parent 11: “I think there’s a bit of a developmental delay that can potentially happen to the child as well. So, you’re not looking for the regular markers, or you’re looking for the regular markers, but they might happen at a different time.”
Relationships with providers	Good relationships/comfort with pediatric provider for parent and AYA	Parent 1: “I honestly think if [my daughter] had a big issue, she could talk to [her oncology provider] about anything.”
		Parent 8: “You’re really close to the pediatric oncologist.You see your oncologist team every day, you know. Pretty much almost every day for months on end. You become close to them. You rely on them for the advice going through everything.”
		Parent 12: “I like the pediatric oncology place, you know. It’s all the nurses, people who know you and you know. You have history.”
	Providers as barriers to AYA autonomy or HCT itself	Parent 1: “Pediatric oncology told her she could come there for the rest of her life if she wanted to.”
		Parent 4: “I feel like chemo survivorship kind of relies more on me. Not that they don’t recognize [my son] as an adult, but since they’re so used to dealing with parents versus the young adult aspect of this. It’s a little harder for him to take the driver’s seat.”
		Parent 9: “They’re like, ‘No, we’re not letting you go.’ So, he’s always the oldest one to walk in that office . . . But, um, he-he still goes there.”
	Providers as facilitators of AYA autonomy or HCT	Parent 4: “His current nephrologist is really excellent at helping [my son] navigate himself, and I’m just kind of in the background. His most recent appointment, he actually went without me. He felt comfortable going without me.”
	Providers as facilitators of AYA autonomy or HCT	Parent 5: “In her oncology survivorship appointments, I’m not even allowed to talk.”
	Providers introducing plan/guidance for HCT	Parent 8: “I know that . . . at [her pediatric oncologist office], they will see her until she’s 21. And then they will transfer her to an adult survivor oncologist.”
	Providers introducing plan/guidance for HCT	Parent 9: “They just tried to coach us through it.”
Survivors’ mental health challenges	Mental health impact of cancer experience persists in survivorship for AYAs	Parent 1: “She started relating going, starting college, like starting kindergarten, and she was afraid she was getting sick, and she started having severe panic attacks and stuff like that. . . As she has gotten older, she has gotten anxious.”
		Parent 2: “You’ve been through something where you’re facing your own mortality . . . going to funerals of your friends . . . I don’t know if it’s PTSD, but . . . I don’t know any kid who’s gone through this . . . that isn’t having some kind of mental health challenges.”
		Parent 6: “I think my biggest thing is . . . them truly not knowing how traumatic the experience of childhood cancer was on him. . . He does have some PTSD. He does—like there’s things that, you know, he does that he doesn’t even realize because of the cancer. . . You know, he lost some very close friends—very close friends around his age, and that took a mental toll on him.”
		Parent 8: “So she has a lot of anxiety, and that started with cancer. So, it comes and goes. And usually in the winter months it’s a little harder for her. So we’re in the thick of it, actually.”
	AYAs do not want to discuss/remember cancer treatment	Parent 5: “And she doesn’t even know all the information. And she doesn’t want to know all the information.”
	AYAs do not want to discuss/remember cancer treatment	Parent 6: “He’s afraid of that connection. . . and he doesn’t want to go through that again. . . I don’t think he wants to think about it. . . He doesn’t really like to go to events and meet new kids that have cancer or any of that stuff.”

AYA, adolescent and young adult; HCT, health care transition; PTSD, post-traumatic stress disorder.

Parental uncertainty related to HCT

Parents described uncertainty related to when or how the transfer to adult care would occur. They referenced a lack of resources to support them or their survivor children, unclear or inconsistent information provided by providers, and a lack of confidence in adult care providers to address the complex medical issues of survivors of pediatric cancer in general. Parents were unsure whether their involvement would be welcomed by adult providers and whether transfer to adult care would be abrupt.

Parent roles during treatment

Most parents recounted, unsurprisingly, that they were the lead communicator and primary decision-maker during their child’s cancer treatment. The comfort they and their children had developed with this arrangement created reluctance in both them and their children to shift decision-making ownership to the AYA.

Parent–AYA roles now/future

The respective roles of parents and AYA survivors represented a continuum, ranging from full parental control with AYA agreement to full AYA control of decision-making with parental support. Many parents suggested their AYA child needed or wanted the parent in the lead. Parents described a need to teach their AYAs how to navigate health care and ensure their AYA survivors had all relevant information about their cancer and treatment.

Relationships with providers

Most parents pointed to strong bonds they and their AYA survivors had with their pediatric health care providers as barriers to HCT for all involved parties. However, they also referenced providers’ pivotal role in guiding AYA’s into ownership of their care by insisting on direct communication with the AYA rather than the parent.

Survivors’ mental health challenges

Despite the interview guide lacking an item specific to AYA’s mental health, a prevalent theme was parental concern related to mental health challenges facing their AYA survivors. Many parents voluntarily discussed current mental health struggles of their children, with some reporting they see similar struggles within their child’s survivorship peer group. Parents lamented their feelings of being ill-prepared to assist their AYA children in dealing with these challenges. One parent specifically asked why pediatric oncology teams did not approach mental health in survivorship proactively, rather than reactively.

Integration of quantitative and qualitative data

Integration of quantitative and qualitative data revealed that the TRI-P subscales reflect similar concerns mentioned during parent interviews (see Table 5). Parents spoke to the knowledge and skills they and their AYAs had related to treatment and associated health risks as well as knowledge of health care navigation. In sharing their own uncertainties regarding HCT, parents touched on their beliefs, expectations, and goals related to adult health care providers and parents’ own continued involvement in care. Relationships and communication among all parties were discussed as parents shared their roles during treatment, survivorship, and into adulthood. Parents’ reflections on stress or anxiety related to the unknowns of HCT mirrored their PEDA and PSS scores, which were higher than population means.

Table 5.

Joint Display of Quantitative and Qualitative Findings

Quantitative measure (score range)	Observed range (M, SD)	Qualitative theme: Qualitative quote examples
Data convergence
TRI-P subscales
Knowledge (19–95)	53–89 (72.7, 8.3)	Parent-AYA Roles Now/Future:Parent 5: “And she doesn’t even know all the information. And she doesn’t want to know all the information.”
Skills/self-efficacy (13–65)	33–64 (45.1, 7.3)	Parent-AYA Roles Now/Future:Parent 2: “Now we’re starting to let her take control, but it’s a lot for an 18-year-old.”
Beliefs/expectations (12–60)	24–45 (35.4, 6.0)	Parental Uncertainty Related to HCT:Parent 3: “I’m concerned. you know? Is a new general practitioner going to have the background, like, know all the things he’s at risk for? Right now I know his, his pediatrician does. But, gosh! I don’t know what [an adult provider] knows.”
Goals/motivation (4–20)	7–19 (11.0, 2.9)	Parental Uncertainty Related to HCT:Parent 12: “Oncology, we just go in. We haven’t really had that conversation [about transitioning to adult care.] . . .They haven’t brought it up and neither have I, ‘cause I don’t want to go anywhere else.”
Relationships/communication (10–50)	28–46 (36.4, 4.6)	Parent-AYA Roles Now/Future:Parent 4: “I feel like chemo survivorship kind of relies more on me. Not that they don’t recognize [my son] as an adult, but since they’re so used to dealing with parents versus the young adult aspect of this. It’s a little harder for him to take the driver’s seat.”
Psychosocial/emotional (8–40)	8–31 (20.5, 6.4)	Parental Uncertainty Related to HCT:Parent 6: “I’m scared. I’m really nervous. I feel like they’re not gonna understand how much he truly went through.”
PEDA total (4–20)	4–16 (9.4, 3.6)	Parental Uncertainty Related to HCT:Parent 12: “She’s been his doctor pretty much the whole time he’s been in treatment, but he’s too old now. He just turned 19, and so now we’re looking for another doctor, which is a little anxiety producing for me . . . because I want to make sure I find someone . . . who’s familiar with [pediatric cancer] cause there’s just so many things that you might miss if you’re not aware of, you know, what could happen.”
PSS total (0–40)	4–32 (16, 6.9)	Parent-AYA Roles Now/Future:Parent 5: “Being unaware of what is being said, what she’s saying . . . just outcomes, decisions. It’s gonna be hard to not be a part of that.”
Data Divergence
None of the quantitative measures addressed the mental health of the AYA.	N/A	Survivors’ Mental Health Challenges:Parent 2: “You’ve been through something where you’re facing your own mortality . . . going to funerals of your friends . . . I don’t know if it’s PTSD, but . . . I don’t know any kid who’s gone through this . . . that isn’t having some kind of mental health challenges.”

AYA, adolescent and young adult; HCT, health care transition; PEDA, PROMIS Emotional Distress-Anxiety-Short Form 4a; PSS, Perceived Stress Scale; PTSD, post-traumatic stress disorder; TRI-P, Transition Readiness Inventory-Parent.

An important divergence in the data was revealed in the qualitative finding related to parental concerns about the mental health challenges of AYA survivors. While the TRI-P considers psychosocial/emotional status, the items focus solely on emotions around HCT. In contrast, parents spoke of true mental health challenges that both plagued their AYA survivors and negatively impacted HCT.

Discussion

This study proposed to better understand HCT readiness in parents of AYA survivors of pediatric cancers. Both anxiety and perceived stress were higher than population means. Parental perceived stress and AYA survivor age were predictive of HCT readiness. Qualitative interviews revealed that survivors’ parents share concerns common across parents of other medically complex AYAs; however, unique to these parents was an expressed concern related to the mental health struggles observed in their AYA survivor children.

In the predictive model, scores of parental HCT readiness showed a negative correlation with parental perceived stress and a positive, though weaker, correlation with AYA age. The negative correlation between perceived stress and HCT readiness highlights the importance of assessing parental distress around HCT. The correlation between older AYA age and greater HCT readiness is consistent with other studies,^56,57 likely due to maturity increasing with age.

The sample’s mean scores of perceived stress and anxiety were higher than population means.^54,55 Other studies have suggested that parents of children with cancer may experience higher anxiety and perceived stress than the general adult population.⁵⁸ Our findings indicate that these effects may linger into survivorship and potentially influence parents’ HCT readiness. As providers support AYA survivors and their parents through HCT, they can assess parental stress and offer resources and support, such as psychosocial services or peer support.^26,30,35

Qualitative analysis revealed several themes that were similar to those found in other studies of parents of medically complex AYAs nearing HCT. Commonalities included parents emphasizing the practical importance of their AYAs learning to manage their own care,^32,59,60 their responsibility to serve as teachers helping their AYAs understand their diagnoses and associated risks,⁶¹ the challenge of leaving behind trusted pediatric provider teams,^{18,23,59,62,63} and uncertainty related to timing and planning for HCT.^64,65 These commonalities suggest that interventions demonstrated to be helpful in a different parent population would be worthwhile testing with parents of AYA survivors of cancer.

While parents in other studies voiced concerns related to losing part of their identities as their roles shifted,^16,18,33 survivors’ parents remained focused on their AYA’s ability to lead and manage their own health care. Whether parents perceived their AYA children lacked knowledge regarding their medical history or how to navigate health care systems, parents frequently expressed emotions ranging from anxiety to fear as they considered future implications for their survivor children. This suggests that health care providers for survivors of pediatric cancer may need to guide parents on how to prepare their AYAs for independence in the adult health care environment.

Parents expressed concern related to survivors’ mental health issues in the context of HCT, despite no questions on the interview guide explicitly inquiring about this area. While studies of survivors of pediatric cancers have demonstrated they are at greater relative risk for several mental health diagnoses,^66–68 findings suggest that during HCT, AYA survivors may need better guidance about mental health issues. Parents felt that neither they nor their AYAs were adequately prepared for potential mental health challenges. While this issue has not been explored in parents, Racine and colleagues⁶⁹ suggest that measures of readiness may be limited and that even individuals with high readiness scores can experience distress and perplexity regarding HCT. This unique finding, especially when considered in combination with the correlation of lower HCT readiness in parents who reported higher perceived stress, points to an area where further research is needed to explore this phenomenon and its impact on HCT readiness in a larger and more diverse sample. While other instruments are available to measure mental health challenges (such as the PSS and PEDA), there could be an opportunity to represent mental health challenges in the TRI and TRI-P.

This study had limitations. The sample size was a limitation for generalizing findings and conducting some of the quantitative analyses. A sample size of approximately 50 was the minimum for establishing relationships through correlation or regression.⁷⁰ Because the study was underpowered, it is possible that potential predictors of the TRI-P score were excluded from the model, and some skepticism is required regarding parental perceived stress and AYA age as predictors in the model. However, the predictors may be viewed as indicators for future exploration. While recruitment through social media has been successfully utilized in other studies,^28,71 the use of personal social media networks rather than paid advertising links likely contributed to the homogeneity of the sample. The lack of fully established reliability and validity of the TRI-P is a limitation. However, the Cronbach’s alpha for the TRI-P total score was α = 0.76, which is an acceptable value for a newer instrument.⁷² Despite these limitations, the results of this study suggest that further exploration would be fruitful, especially with larger, more heterogeneous samples.

In conclusion, parental readiness for HCT appears to be influenced by a complex interaction of factors related to both their own experiences and those of their AYA survivors. Additional research is warranted to explore how survivors’ and parents’ mental health challenges in the AYA years, as well as SDOH and lifestyle factors, can influence HCT readiness for the AYAs and for their parents. Pediatric cancer providers are called to go beyond a “cure”; they are called to support their patients and parents through HCT, so that movement into the adult health care system can be celebrated rather than dreaded. Ultimately, research in this area should help health care providers identify parents most at-risk of not being ready for HCT and develop and test transition programs influenced and guided by the SMART, enhancing parents’ ability to effectively support their AYA survivors through this important milestone.

Authors’ Contributions

J.L.E.: Conceptualization, methodology, investigation, formal analysis, data curation, and writing—original draft. S.A.: Conceptualization, methodology, writing- original draft preparation, and visualization. L.A.S.: Methodology and writing—reviewing and editing. N.J.: Methodology and writing—review. T.P.: Methodology and writing—review. R.K.E.: Formal analysis, writing—reviewing and editing, and supervision.

Footnotes

Acknowledgment

The authors are grateful to Mr. Roy Brown for his expertise and assistance in the review of relevant literature. The authors thank Ms. Sally Russell for her assistance with building the REDCap survey. The authors wish to thank Ms. Jessica Beckstrand of the American Childhood Cancer Organization for her support and assistance with participant recruitment efforts. The authors express gratitude and appreciation to the parents who participated in this study.

Author Disclosure Statement

J.L.E., S.A., L.A.S., N.J., T.P., and R.K.E. have no conflicts of interest to report.

Funding Information

This study was funded by a research grant provided by the Society of Pediatric Nurses (SPN). This grant was awarded in April, 2024, to Jennifer Ellison.

References

Blum

RWM

, Garell

, Hodgman

, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine. J Adolesc Health, 1993; 14(7):570–576; doi: 10.1016/1054-139x(93)90143-d

Howlader

, Noone

, Krapcho

, et al. SEER Cancer Statistics Review, 1975–2017. National Cancer Institute; 2021.

Robison

, Hudson

. Survivors of childhood and adolescent cancer: Life-long risks and responsibilities. Nat Rev Cancer, 2014; 14(1):61–70; doi: 10.1038/nrc3634

American Academy of Pediatrics, American Academy of Famiy Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transition for young adults with special health care needs. Pediatrics, 2002; 110(Supplement_3):1304–1306; doi: 10.1542/peds.110.S3.1304

Childhood Cancer Survivor Study (CCCS). Baseline data, St. Jude children’s research hospital, based on data posted to CCSS website. 2016.

Granek

, Nathan

, Rosenberg-Yunger

ZRS

, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv, 2012; 6(3):260–269; doi: 10.1007/s11764-012-0223-0

Hudson

, Ness

, Gurney

, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA, 2013; 309(22):2371–2381; doi: 10.1001/jama.2013.6296

Schwartz

, Tuchman

, Hobbie

, et al. A social‐ecological model of readiness for transition to adult‐oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev, 2011; 37(6):883–895; doi: 10.1111/j.1365-2214.2011.01282.x

Magrab

, Millar

HEC

. Surgeon general’s conference growing up and getting medical care; youth with special health care needs: A summary of conference proceedings. United States. Public Health Service. Office of the Surgeon General; 1989.

10.

Nazareth

, Hart

, Ferris

, et al. A parental report of youth transition readiness: The parent STARx questionnaire (STARx-P) and re-evaluation of the STARx child report. J Pediatr Nurs, 2018; 38:122–126; doi: 10.1016/j.pedn.2017.08.033

11.

Nandakumar

, Fardell

, Wakefield

, et al.; ANZCHOG Survivorship Study Group. Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care. Support Care Cancer, 2018; 26(8):2743–2750.

12.

Bashore

, Bender

. Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: A pilot study. J Pediatr Oncol Nurs, 2016; 33(2):111–118; doi: 10.1177/1043454215590102

13.

Byrnes

IYS

. Healthcare transition from the AYASHCN’s perspective . In: Health Care Transition: Building a Program for Adolescents and Young Adults with Chronic Illness and Disability. ( Hergenroeder

, Wiemann

. eds.) Springer International Publishing AG; 2018; pp. 33–42.

14.

Heath

, Farre

, Shaw

. Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns, 2017; 100(1):76–92; doi: 10.1016/j.pec.2016.08.011

15.

Van Staa

, Jedeloo

, Van Meeteren

, et al. Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev, 2011; 37(6):821–832; doi: 10.1111/j.1365-2214.2011.01261.x

16.

Ellison

, Brown

, Ameringer

. Parents’ experiences with health care transition of their adolescents and young adults with medically complex conditions: A scoping review. J Pediatr Nurs, 2022; 66:70–78; doi: 10.1016/j.pedn.2022.04.018

17.

Sadak

, Neglia

, Freyer

, et al. Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative study of survivorship providers. Pediatr Blood Cancer, 2017; 64(11); doi: 10.1002/pbc.26587

18.

Wright

, Elwell

, McDonagh

, et al. Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services. Pediatr Transplant, 2017; 21(1):e12760; doi: 10.1111/petr.12760

19.

Suris

J‐C

, Larbre

J‐P

, Hofer

, et al. Transition from paediatric to adult care: What makes it easier for parents? Child Care Health Dev, 2017; 43(1):152–155; doi: 10.1111/cch.12405

20.

Bratt

, Burström

, Hanseus

, et al.; On behalf on the STEPSTONES-CHD consortium. Do not forget the parents—Parents’ concerns during transition to adult care for adolescents with congenital heart disease. Child Care Health Dev, 2018; 44(2):278–284; doi: 10.1111/cch.12529

21.

de Hosson

, Goossens

PJJ

, De Backer

, et al. Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: A qualitative study. J Pediatr Nurs, 2021; 61:90–95; doi: 10.1016/j.pedn.2021.03.016

22.

Lindsay

, McAdam

, Mahendiran

. Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital. Disabil Health J, 2017; 10(1):73–79; doi: 10.1016/j.dhjo.2016.10.002

23.

Lochridge

, Wolff

, Oliva

, et al. Perceptions of solid organ transplant recipients regarding self-care management and transitioning. Pediatr Nurs, 2013; 39(2):81–89.

24.

McCann

, Kearney

, Wengström

. “It’s just going to a new hospital … that’s it.” Or is it? An experiential perspective on moving from pediatric to adult cancer services. Cancer Nurs, 2014; 37(5):E23–E31; doi: 10.1097/NCC.0b013e3182a40f99

25.

Thomsen

, Esbensen

, Hanghoj

, et al. Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs). BMC Health Serv Res, 2022; 22(1):485; doi: 10.1186/s12913-022-07888-5

26.

Nicholas

, Kaufman

, Pinsk

, et al. Examining the transition from child to adult care in chronic kidney disease: An open exploratory approach. Nephrol Nurs J, 2018; 45(6):553–559.

27.

Coyne

, Malone

, Chubb

, et al. Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs. J Child Health Care, 2018; 22(4):646–657; doi: 10.1177/1367493518768448

28.

Davies

, O’Connor

. Mothers’ experiences post-childhood cancer treatment: A qualitative study. J Child Fam Stud, 2023; 32(9):2614–2624; doi: 10.1007/s10826-022-02379-x

29.

Berry

, Kusminsky

, Foley

, et al. Strategic directions for transition to adulthood for patients with spina bifida. J Pediatr Neurol, 2015; 11(04):211–220; doi: 10.3233/JPN-130624

30.

Chandra

, Luetkemeyer

, Romero

, et al. Growing up: Not an easy transition—Perspectives of patients and parents regarding transfer from a pediatric liver transplant center to adult care. Int J Hepatol, 2015; 2015:765957–765959; doi: 10.1155/2015/765957

31.

Haig‐Ferguson

, Wallace

, Davis

. The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula. J Clin Nurs, 2023; 32(7–8):1433–1442; doi: 10.1111/jocn.16333

32.

Lindsay

, Fellin

, Cruickshank

, et al. Youth and parents’ experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model. Disabil Health J, 2016; 9(4):705–712; doi: 10.1016/j.dhjo.2016.05.009

33.

Burström

, Öjmyr-Joelsson

, Bratt

E-L

, et al. Adolescents with congenital heart disease and their parents: Needs before transfer to adult care. J Cardiovasc Nurs, 2016; 31(5):399–404; doi: 10.1097/JCN.0000000000000288

34.

Fernandes

, O’Sullivan-Oliveira

, Landzberg

, et al. Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective. J Pediatr Rehabil Med, 2014; 7(1):43–51; doi: 10.3233/PRM-140269

35.

Gray

, Resmini

, Baker

, et al. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: Perspectives of patients, parents, and health professionals. Inflamm Bowel Dis, 2015; 21(7):1641–1651; doi: 10.1097/MIB.0000000000000419

36.

Morsa

, Gagnayre

, Pomey

M-P

, et al. Developmentally appropriate patient education during transition: A study of healthcare providers’ and parents’ perspective. Health Educ J, 2020; 79(4):377–389; doi: 10.1177/0017896919888559

37.

Ness

, Saylor

, Ji

, et al. Challenges experienced by parents of emerging young adults with type 1 diabetes mellitus during the transition to college. Diabetes Educ, 2020; 46(5):435–443; doi: 10.1177/0145721720943120

38.

Kuhlthau

, Delahaye

, Erickson-Warfield

, et al. Health care transition services for youth with autism spectrum disorders: Perspectives of caregivers. Pediatrics, 2016; 137 Suppl 2(Supplement_2):S158–S166; doi: 10.1542/peds.2015-2851N

39.

Creswell

, Plano-Clark

. Designing and Conducting Mixed Methods Research, 3rd ed. Sage; 2018.

40.

White

, Cooley

, Transition Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 2018; 142(5):e20182587; doi: 10.1542/peds.2018-2587

41.

Harris

, Taylor

, Minor

, et al.; REDCap Consortium. The REDCap consortium: Building an international community of software partners. J Biomed Inform, 2019; 95:103208; doi: 10.1016/j.jbi.2019.103208

42.

Harris

, Taylor

, Thielke

, et al. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform, 2009; 42(2):377–381.

43.

Schwartz

, Hamilton

, Brumley

, et al. Development and content validation of the transition readiness inventory item pool for adolescent and young adult survivors of childhood cancer. J Pediatr Psychol, 2017; 42(9):983–994; doi: 10.1093/jpepsy/jsx095

44.

Manchanda

, Gottlieb

. Upstream Risks Screening Tool and Guide V2.6. HealthBegins; Los Angeles, CA; 2015.

45.

Kaiser Permanente. Your current life situation survey. n.d.

46.

Pilkonis

, Choi

, Reise

, et al.; PROMIS Cooperative Group. Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS): Depression, anxiety, and anger. Assessment, 2011; 18(3):263–283.

47.

Ekas

, Kouros

, Rigsby

, et al. A longitudinal examination of mental health and marital functioning of mothers and fathers of autistic adolescents during Covid-19. Autism, 2024; 28(3):674–689; doi: 10.1177/13623613231182180

48.

Patient Reported Outcomes Measurement Information System (PROMIS). PROMIS Anxiety Scoring Manual. PROMIS; 2022.

49.

Cohen

, Kamarck

, Mermelstein

. A global measure of perceived stress. J Health Soc Behav, 1983; 24(4):385–396.

50.

Lee

. Review of the psychometric evidence of the perceived stress scale. Asian Nurs Res (Korean Soc Nurs Sci), 2012; 6(4):121–127; doi: 10.1016/j.anr.2012.08.004

51.

Hosmer

, Lemeshow

, Sturdivant

. Applied Logistic Regression, 3rd ed. Wiley & Sons; 2013.

52.

Elo

, Kyngas

. The qualitative content analysis process. J Adv Nurs, 2008; 62(1):107–115; doi: 10.1111/j.1365-2648.2007.04569.x

53.

Hsieh

H-F

, Shannon

. Three approaches to qualitative content analysis. Qual Health Res, 2005; 15(9):1277–1288.

54.

Health Measures. PROMIS: T-Score metric. 2025. Available from: https://www.healthmeasures.net/score-and-interpret/interpret-scores/promis

55.

Cohen

, Williamson

. Perceived stress in a probability sample of the United States. In: The Social Psychology of Health. ( Spacapan

, Oskamp

. eds.) Sage; 1988; pp. 31–67.

56.

Varty

, Speller-Brown

, Wakefield

, et al. Decision-making involvement, self-efficacy, and transition readiness in youth with sickle cell disease. Nurs Res, 2022; 71(1):12–20.

57.

Smith

, Gutierrez-Colina

, Roemisch

, et al. Modifiable factors related to transition readiness in adolescents and young adults with epilepsy. Epilepsy Behav, 2021; 115:107718; doi: 10.1016/j.yebeh.2020.107718

58.

Van Warmerdam

, Zabih

, Kurdyak

, et al. Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta‐analysis. Pediatr Blood Cancer, 2019; 66(6):e27677; doi: 10.1002/pbc.27677

59.

Ekaterina

, Thorsten

, Gabriele

, et al. Stepping into adulthood: Pediatric cancer survivors and their parents’ perspectives on the transition from pediatric to adult care. BMC Health Serv Res, 2025; 25(1):204; doi: 10.1186/s12913-025-12326-3

60.

Pitts

, Patrician

, Landier

, et al. Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis. J Pediatr Nurs, 2024; 76:1–15; doi: 10.1016/j.pedn.2024.01.028

61.

Crawford

, Low

, Le Page

, et al. Transition from a renal paediatric clinic to an adult clinic: Perspectives of adolescents and young adults, parents and health professionals. J Child Health Care, 2022; 26(4):531–547; doi: 10.1177/13674935211028410

62.

Badour

, Bull

, Gupta

, et al. Parental involvement in the transition from paediatric to adult care for youth with chronic illness: A scoping review of the North American literature. Int J Pediatr, 2023; 2023:9392040; doi: 10.1155/2023/9392040

63.

Loecher

, Tran

, Kosyluk

. Parental perspectives on health care transition in adolescent and young adult survivors of pediatric cancer. J Adolesc Young Adult Oncol, 2023; 12(4):461–471; doi: 10.1089/jayao.2022.0097

64.

, Wang

, Lu

, et al. The experiences of adolescent solid organ transplantation recipients, parents, and healthcare professionals in healthcare transition: A qualitative systematic review. J Pediatr Nurs, 2023; 71:e154–e164; doi: 10.1016/j.pedn.2023.05.015

65.

Padley

, Moubayed

, Lanteigne

, et al. Transition from paediatric to adult health services: Aspirations and practices of human flourishing. Int J Qual Stud Health Well-Being, 2023; 18(1):2278904; doi: 10.1080/17482631.2023.2278904

66.

Burghardt

, Klein

, Brähler

, et al. Prevalence of mental distress among adult survivors of childhood cancer in Germany—Compared to the general population. Cancer Med, 2019; 8(4):1865–1874; doi: 10.1002/cam4.1936

67.

Lee

ARYB

, Low

, Yau

, et al. Lifetime burden of psychological symptoms, disorders, and suicide due to cancer in childhood, adolescent, and young adult years: A systematic review and meta-analysis. JAMA Pediatr, 2023; 177(8):790–799; doi: 10.1001/jamapediatrics.2023.2168

68.

Marchak

, Christen

, Mulder

, et al.; International Guideline Harmonization Group psychological late effects group. Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: A report from the international late effects of childhood cancer guideline harmonization group. Lancet Oncol, 2022; 23(4):e184–e196; doi: 10.1016/S1470-2045(21)00750-6

69.

Racine

, Ouimet

, Gutierrez Rojas

, et al. Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents. Health Care Transit, 2025; 3:100095; doi: 10.1016/j.hctj.2025.100095

70.

Wilson Van Voorhis

, Morgan

. Understanding power and rules of thumb for determining sample sizes. TQMP, 2007; 3(2):43–50; doi: 10.20982/tqmp.03.2.p043

71.

Hwang

, Sivaratnam

, Azeredo

, et al. Exploring the use of social media and online methods to engage persons with lived experience and healthcare professionals in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership. PLOS Digit Health, 2024; 3(1):e0000181; doi: 10.1371/journal.pdig.0000181

72.

Nunnally

, Bernstein

. Psychometric Theory, 3rd ed. McGraw-Hill: New York; 1994.