Barriers and Facilitators to Youth Decision-Making Involvement in Families Referred for Stem Cell Transplant

Abstract

Youth prefer to be involved in treatment decisions, yet youth participation is minimally present in decisions like stem cell transplant (SCT) that require frequent medications and social isolation to be successful in curing cancer and chronic illness. The purpose of our study is to identify the barriers and facilitators to youth decision-making involvement in the youth–parent interaction when referred for treatment with SCT. We report qualitative findings from our theory-driven mixed-methods study. We thematically analyzed our field notes of youth and parent observations and audio-recordings during SCT consultations and semi-structured interviews. Data were collected from 10 youth, 8 to 16 (median 12) years of age, and their parents (n = 20). Three themes emerged: (a) Reluctant unless motivated, (b) Uncertain but capable, and (c) Limited unless supported. Our findings emphasize the critical role parents may take in facilitating youth involvement in decisions.

Introduction

Stem cell transplant (SCT) is increasingly being offered as curative treatment to children and adolescents (referred to as youth hereafter) with cancer and many pediatric chronic illnesses such as sickle cell disease, metabolic disorders, and immune deficiencies (D’Souza et al., 2021). It is an intense treatment requiring daily medications, frequent visits to a clinic, and isolation from friends and school for many months post-transplant. Youth as young as 8 years of age recognize that they are the ones expected to participate in these daily treatment tasks and prefer to be involved in treatment decisions and discussions (Jedeloo et al., 2010; Kelly et al., 2017; van Staa & On Your Own Feet Research Group, 2011). Yet youth participation is minimally present in the pediatric decision experience (Coyne et al., 2016; Van Staa et al., 2011; Young et al., 2003) and youth report high levels of feeling uninformed during the SCT decision-making process (Schulz et al., 2021).

Pediatric decision science has shifted in recent years from understanding youth capacity in making decisions to promoting youth involvement in decision-making as appropriate (Knopf et al., 2008; Miller, 2018). Furthermore, organizations such as the American Academy of Pediatrics (Adams et al., 2017) and the World Health Organization (Solar & Irwin, 2010) advocate for inclusion of youth in medical decision-making. Miller and Harris (2012) define youth decision-making involvement as the youth actively participating and the parents and health care providers soliciting views and opinions from the child or youth. This active participation of asking questions and giving opinions during treatment discussions can increase feelings of being informed (Stacey et al., 2014) and enhance illness management and treatment compliance with medications and other treatment-related tasks (Kelly et al., 2017; Miller et al., 2017).

The Precision Health in Pediatric Oncology Framework identifies the pediatric treatment decision-making experience as triadic, involving the provider, parent, and youth patient (Pyke-Grimm et al., 2020). The value of the youth–parent interaction in treatment decision-making warrants more attention and further investigation. Youth view their parents as essential to the decision-making process and look to their parents to facilitate and relay health communication to them (Coyne et al., 2016; Mant et al., 2019; Smith et al., 2019). A study investigating decisional conflict in the SCT decision found youth and parents share similar sources of uncertainty (Schulz et al., 2021). Our prior work highlights the need to better understand the dialogue and interaction that occurs between youth and their parents in the SCT decision-making process. The purpose of our study is to identify the barriers and facilitators to youth decision-making involvement specific to the youth–parent interaction when referred for treatment with SCT.

Design and Method

We used mixed methods to study real-world pediatric SCT decision experiences and obtain a rich description of self-reported and actual barriers and facilitators to youth decision-making involvement. We applied the Theoretical Domains Framework to explore individual, social, and environmental barriers and facilitators to youth decision-making involvement throughout data collection (Cane et al., 2012). We adopted Miller and Harris’s (2012) description of youth decision-making involvement, examining the following interactions in real-time SCT decisions: (a) youth and parents expressing information/opinions to/from each other, (b) youth and parents seeking information/opinions to/from each other, and (c) youth and parents discussing SCT as a treatment option. In this report, we share our qualitative descriptive methods and findings. To report our qualitative findings, we used the Consolidated Criteria for Reporting Qualitative Research guidelines (Tong et al., 2007). See Supplemental Appendix 1 for checklist and Supplemental Appendix 2 for reflexivity statement.

Participants and Setting

Inclusion criteria were youth 8 to 17 years of age with any diagnosis prompting a referral for a SCT, who had a parent(s) also willing to participate. Up to two legal guardian(s) per youth were eligible to participate. Those unable to speak English or cognitively unable to participate were ineligible. Recruitment and data collection took place in an outpatient hematology/oncology clinic at a Midwest academic medical center in the United States. The aim was to recruit 10 youth and 10 parents based on previous theory-driven studies that reached data saturation with similar sample sizes (Atkins et al., 2017; Malterud et al., 2016; Sandelowski, 1995). The academic medical center’s Institutional Review Board reviewed and approved the study.

Data Collection

After face-to-face consent and assent were obtained from participants, we collected data from each participant at two time points (Figure 1). The first author (G.L.S.), a female pediatric nurse practitioner in SCT and PhD-prepared nurse, collected all data. Each participant received a $25 gift card after completing procedures at Time point 1 and a $50 gift card at Time point 2. Time point 1 occurred in person at the time of meeting with the physician for SCT consultation with a goal of capturing observed barriers and facilitators during an actual SCT discussion. Time point 2 occurred in person or via phone with a goal of capturing self-reported barriers and facilitators through semi-structured qualitative interviews, at which point a final decision to pursue SCT may or may not have been made. All families completed their interviews via phone within 2 weeks after the consultation visit, except one family who completed their interview 6 weeks after consultation due to preference to complete it in person and in coordination with a clinic visit. One family did not complete Time point 1 due to the physician’s opinion that in this particular case, it was better to approach the family after the SCT consultation occurred. Although provider level data was not analyzed in the SCT consultation observations, consent was obtained from providers to audio record their consultation visit.

Figure 1.

Illustration of Data Collection Procedures.

Observations and Audio-Recording.

The first author (G.L.S.) was an observer in the examination room during the SCT consultation and completed an observation collection guide on paper (Supplemental Appendix 3). Consultation visits were also audio-recorded. Verbal and nonverbal youth–parent interactions relating to seeking information/opinions, expressing information/opinions, and discussing SCT as a treatment option were recorded on the observation collection guide. Audio-recordings were listened to, and relevant data were added to the collection guide documentation to capture any additional verbal observations. Behaviors identified within the Theoretical Domains Framework were documented, with such behaviors including skills they may or may not have exhibited, roles they may or may not have taken, any reinforcement they may or may not have received, environmental stressors or resources available, or any social influences or emotions (Cane et al., 2012). The collection guides were uploaded to Dedoose qualitative research software for analysis.

Semi-Structured Interview.

Semi-structured interviews were audio-recorded and completed by the first author (G.L.S.) with each participant in person or via phone, according to participant preference. It was preferred that parent and youth participants be interviewed separately to capture individual perspectives. However, if participants preferred to be interviewed together, questions were directed to the intended interviewee. We applied the Theoretical Domains Framework to develop the interview guide (Cane et al., 2012). Sample questions included: (a) How might you/your child be encouraged to be involved in the transplant decision-making process? (b) Why do you think you/your child was not involved in the transplant decision-making process? See Supplemental Appendix 4 for the full interview guide. Interviews were sent to TranscribeMe, a professional transcription service, verified for accuracy and deidentified by the first author (G.L.S.), and uploaded to Dedoose qualitative research software for analysis.

Data Analysis

Data-driven, inductive, thematic analysis was used to analyze the data (Braun & Clarke, 2006). The first author (G.L.S.) and a female nursing PhD student, second author (A.P.), independently coded the data. The coding steps included: (a) becoming familiar with the data in the interview transcripts and observation collection guides by reading and re-reading, (b) initial coding of the interview transcripts, (c) initial coding of the observation collection guides, (d) categorizing the codes as barriers or facilitators, (e) searching for themes within the codes and constant comparison, (f) reviewing the themes against the codes and the entire data set through diagramming, and (g) naming and defining the themes (Braun & Clarke, 2006). G.L.S. and A.P. met weekly to discuss their coding and refine codes and themes. Discrepancies were resolved and coding agreed upon through open discussion. Barriers and facilitators were defined as factors which impede and enable youth decision-making involvement.

Findings

Patient and Parent Characteristic

We collected data on 10 youth–parent dyads (n = 20). No participants dropped out, but there was one youth (8 years of age) who was difficult to engage in the interview and hence did not provide sufficient data to include in analysis. The parents all identified as female with a mix of education levels ranging from high school diploma to master’s degree. Youth were a median of 12 years of age with their reasons for referral to SCT being a nonmalignant hematological disorder or immune deficiency. For many of these patients, SCT was the only curative option; while continuing or changing their current disease-modifying or supportive therapies were alternative options. Fifty percent of youth and parents identified as Black or African American (Table 1).

Table 1.

Demographics From Questionnaire (n = 20).

Demographic	N (%) or median (min-max)
Parent gender/relation to child
Female/mother	10 (100)
Youth gender
Female	4 (40)
Male	6 (60)
Parent and youth race/ethnicity
Black or African American	5 (50)
White or Caucasian	4 (40)
Middle Eastern	1 (10)
Parent age (in years)	34 (32–47)
Parent education level
High school	3 (30)
Some higher education, but no degree	4 (40)
Bachelor’s degree	0 (0)
Master’s degree	3 (30)
Age of child (in years)	12 (8–16)
Youth grade in school
Elementary school: grades 1–5	3 (30)
Middle school: grades 6–8	6 (60)
Some high school	1 (10)
Child’s disease
Chronic granulomatous disease	2 (20)
Sickle cell disease/beta thalassemia	5 (50)
Aplastic anemia	2 (20)
Severe combined immune deficiency	1 (10)
When child was diagnosed
Less than or equal to 1 year ago	0 (0)
Over 1 year ago	10 (100)
Type of transplant
Allogeneic	9 (90)
Unsure	1 (10)
Type of health insurance
Private insurance	6 (60)
Medicaid or government program	4 (40)

Barriers and Facilitators to Youth Decision-making Involvement

We identified three themes in the data: (a) Reluctant unless motivated, (b) Uncertain but capable, and (c) Limited unless supported. Within these themes were also identified subthemes of barriers and facilitators. Table 2 summarizes the themes, subthemes, and codes. A detailed description of each theme and subtheme, along with exemplar illustrations, is given as follows.

Table 2.

Themes, Subthemes, and Codes.

Theme	Subthemes	Codes
Reluctant unless motivated	• Reluctance to talk about potentially undesirable consequences (barrier) • Desire for youth to be prepared (facilitator) • Interest or opinion in topic at hand (facilitator)	• Parent reluctant to tell youth bad things about SCT • Parent does not want to cause youth negative feelings • Preparing youth for the SCT experience • Recognizing youth are physically going through SCT • Discussing topic of interest to youth • Youth expressing opinion on topic important to them • Parent giving child their opinion about SCT
Uncertain but capable	• Uncertainty in engagement abilities (barrier) • Knowledge of stem cell transplant (facilitator) • Attending to youth’s communication needs (facilitator)	• Parent feels unable to explain SCT to youth • Parent not confident in youth abilities • Not recognizing what youth Involvement/role means • Youth demonstrates understanding of SCT • Parent understands SCT • Parent identifies youth abilities • Parent recognizes youth preference • Having a positive environment
Limited unless supported	• Limited dialogue due to emotions or conflict (barrier) • Being open and honest with each other (facilitator) • Appreciating youth role and voice (facilitator)	• Youth not wanting to talk about SCT • Parent-youth differences • Parent open to talking about hard topics • Parent being honest with youth • Youth finds comfort talking with parent • Parent asking for youth input • Parent giving youth options • Parent seeking youth’s assent

SCT = stem cell transplant.

Theme 1: Reluctant Unless Motivate.

Youth decision-making involvement did not occur when parents were reluctant to talk with their child about the potentially undesirable outcomes, side effects, or expectations that might come along with SCT. Youth and parents did talk about these potentially undesirable consequences with each other when they were motivated by a desire for youth to be prepared for the SCT experience or had something to say about a topic or issue of particular interest to them.

Subtheme: Reluctance to Talk About Potentially Undesirable Consequences (Barrier).

There was a hesitancy from some parents to engage their child in discussion about the bad things that might come along with SCT. Parents identified not wanting to talk about potential side effects with their child: “I’m very reluctant on sharing the chemo side effects and stuff with him” (Parent, 05). Youth identified “side effects of medicine” (Youth 09, 16 years of age) and things that are “painful” (Youth 04, 11 years of age) as things parents may not want to talk about with them. Some parents were also cautious to talk with their child about the expectations that would come along with undergoing SCT. One parent said, “So I haven’t told him that he would be stuck at home for a long time possibly . . . I mean, that’s going to be a big thing for him . . .” (Parent 07).

Parents were particularly concerned that talking about these topics may cause the youth to be upset or worry. During consultation observations, parents were attentive to the child’s reactions looking at their child’s facial expressions when discussing SCT side effects. In an interview, one parent described the potential anxiety her child would experience sharing the expectation that she would have to quit the dance team during SCT: “. . . definitely hesitant about things like that, because we’re very open, but we don’t really bring up bad things, because we don’t want her anxiety to be . . .” (Parent 03). Another parent was concerned that asking her daughter repeatedly if she was ready for the expectations and medications that would come along with SCT might discourage or give her daughter doubts about SCT: “I would be thinking about not including her, to question her, ‘like am I ready’ . . .” (Parent 06).

Subtheme: Desire for Child to Be Prepared for Transplant (Facilitator).

Youth decision-making involvement was enabled when youth and parents recognized that it was the young patient who was physically going to experience the SCT process. Parents who talked about SCT with their child were motivated to do so because they wanted their child to be prepared: “I would say definitely, whatever this person’s going through, make sure that they do know what’s happening because it is their body . . .” (Parent 02). When one youth was asked about why it is good for him to know things ahead of time, he said “I have to go through it” and “So I can be prepared” (Youth 08, 13 years of age). One parent described this motivation as not wanting her child to be surprised, “I just want him to be aware of what’s coming because it’s not going to be all easy. So I just don’t want him to be surprised by it” (Parent 05). Another parent described it as her responsibility to prepare the child: “I mean, I feel like it’s my responsibility to make sure that he understands, and he knows exactly what he’s going into” (Parent 10).

To ensure preparedness, youth and parents talked with each other about how the youth may feel and what would happen during SCT (e.g., pain and other side effects, recovery, expectations). One parent said, “We talked about what the procedure would look like . . . And he asked was it going to hurt? . . .” (Parent 01). When asked what topics were discussed with their parents, one youth stated, “throwing up and losing my hair” (Youth 08, 13 years of age). Daily expectations and life changes during SCT as it related to isolation (e.g., having to miss school, not seeing friends) and medications were talked about proactively to ensure plans were in place. One youth described the conversation she had with her mother about plans during SCT:

We’ve talked about kind of what it would kind of look like afterwards. We’ve made plans for how I’m going to do my homework, . . . how I’m going to interact with my friends and then still be social. . . . What it’ll look like being in the hospital. (Youth 03, 13 years of age)

Another youth acknowledged she and her mom talked about the importance of taking the medications that come along with SCT: “We talked about like, if you get the SCT, you got to take the medicine . . .” (Youth 06, 11 years of age).

Subtheme: Interest or Opinion in Topic at Hand (Facilitator).

Youth decision-making involvement occurred when the topic of conversation was of particular interest to the youth or parent. Youth motivation to speak up about topics of interest was evident in the observations. It was not always obvious the youth were listening (e.g., watching TV, playing with toys, have their headphones in), but they would randomly comment on topics such as hospital stay, medications, or school. One youth commented, “hold on, hold on, 4–6 weeks of admit—I cannot eat this food” (Observation 02, 12 years of age). Several youth had an opinion on the timing of SCT. One youth commented (without prompting during the observation experience) about the timing of when he would want SCT, not wanting to miss a family member’s birthday (Observation 01, 9 years of age).

Parents’ motivation to give opinions or advice to their child related to the importance of having a SCT. One parent said, “But yeah, I would just kind of remind him that this would be a good thing . . .” (Parent 04). Another parent said, “. . . we did the blood work. I said, ‘Let’s go through and see if it’s even a viable option. Let’s give it that much. And then we’ll keep talking . . .” (Parent 02). Parents were motivated to ask their child questions or prompt conversation during the observations, especially about topics they knew their child wanted to know more about. During an observation (03), a mother asked the doctor about the timing of SCT, acknowledging that things such as the school play and dance were important to her child and would impact scheduling.

Theme 2: Uncertain But Capable.

Youth decision-making involvement did not occur when there was uncertainty in the parents’ abilities to explain SCT to their child or when there was uncertainty in youth abilities to participate or comprehend. Youth and parents were capable of engaging in decision-making involvement if they had some understanding of SCT or parents appreciated the youth’s communication needs and preferences to participate.

Subtheme: Uncertainty in Engagement Abilities (Barrier).

Some parents lacked confidence in the youth’s ability to engage in decision-making involvement and some youth lacked self-confidence to engage. Such parents voiced concerns about whether their child could truly comprehend SCT and its side effects: “I don’t think any person her age looks to the future as much as an adult does” (Parent 02). Another parent shared her thoughts on her child understanding the risk of infertility with SCT: “But she’s 13, so she doesn’t understand what that truly means. At 13 you don’t know if you want kids or not” (Parent 03). When asked if their child came to them with any questions, Parent 07 stated, “Not really. I had to try to sit down and talk to him. He still doesn’t really understand it.” Other parents acknowledged their youth were just quiet: “Yeah. He doesn’t talk a lot” (Parent 08). Some youths were unsure if they took an active part in the decision-making process. Youth 01 (9 years of age) stated “Not really” when she was asked about her participation. Another youth said, “I wasn’t really involved” (Youth 09, 16 years of age). Other youth could not recall conversations their parents had with them about SCT. When asked what he and his mother talked about, one youth responded: “I don’t kind of remember because my brain doesn’t remember much stuff” (Youth 05, 8 years of age).

Some parents also expressed some uncertainty with their own ability to give information and discuss SCT with their child: “I didn’t know what to talk about . . . I don’t know how to explain it to her. I need some help” (Parent 06). This same mother during the observation (06) told her child, “I want you to listen to the doctor because she can explain it in better ways.” Part of their discomfort with talking to their child about SCT came from the parents who were themselves still learning, “. . . And so, even just knowing what . . . if you’re still learning, it’s even harder to talk with him about it . . .” (Parent 03).

Subtheme: Knowledge of Stem Cell Transplant (Facilitator).

Youth and parents were capable and did engage with each other if they had some level of understanding about what SCT is and the process. This understanding of SCT came with time: “As you learn more about SCT and the things that are necessary, those are things that you plan to kind of bring up and talk with him about” (Parent 08). A youth pointed out that they were able to discuss SCT as an option because they had an understanding of the pros: “Well, we talked about the pros of it. That in a while, I will actually finally be done with aplastic anemia, and I’ll be behind it” (Youth 03, 13 years of age). This capability of youth participating in discussion when they had knowledge about SCT was also evident during the observations. During one observation (04), a youth 11 years of age was able to verbalize to their parent the importance of SCT, “to cure my sickle cell disease.” Another youth stated, “I will do what I am told,” and acknowledged it was “life and death” (observation 03, 13 years of age). When it was discussed during an observation (01) that the youth could lose his hair, he said, “I knew that” (9 years of age).

Subtheme: Attending to Youth’s Communication Needs (Facilitator).

Youth decision-making involvement occurred when parents were able to identify and meet the youth’s communication needs. One parent described engaging with their child in small increments of time, “. . . They’re not super long, probably 10 minutes. They’re not going to be super detailed because, like I said, one, attention span. And two, just what I would process with an adult, I can’t process with her” (Parent 02). Some youth and parents discussed SCT with each other over multiple occasions: “It really kind of depends. I mean, some days we talk about it a lot, and then we don’t bring it up some days . . .” (Youth 03, 13 years of age). Parent (06) said, “Well, we don’t have the conversation every day. We talked about it when she wanted to.” In the observations, parents identified a need to simplify what the youth was hearing and what it might mean to their child by rewording what the physician said. A mother reinforced what it would mean for their child to have a SCT, saying “you won’t have to come here as often” (Observation 07).

Some parents acknowledged that their child had a preferred mode of engaging:

Yeah, so he’s more of a texter than verbally. Like, “Okay. I got the results about it. You want to talk about it?” He’s like, “Whatever it is, just send it to me through text” . . . So we texted and then followed up with him verbally . . . (Parent 09)

Another parent identified drawing as a way her child expresses himself: “Yeah. Just making sure that—he draws a lot, and I can tell a lot of his feelings through his drawings . . . It’s just a different way of expressing his feelings . . .” (Parent 08). Other parents described a no distraction or relaxed environment that enabled decision-making involvement: “I do on car rides because that’s mostly when we sit down and kind of listen if he doesn’t have his phone, or at dinner” (Parent 07) Another parent said, “I think usually we’re just chilling at home when things come up . . .” (Parent 06).

Theme 3: Limited Unless Supporte.

Youth decision-making involvement was limited or disrupted by differences of opinion or strong feelings as it related to SCT unless parents supported youth’s decision-making involvement through encouraging open and honest communication or prompting youth’s involvement and seeking youth’s assent.

Subtheme: Limited Dialogue Due to Emotions or Conflict (Barrier).

Youth decision-making involvement was restricted or came to a halt due to some youth having heightened emotions and not wanting to talk with their parents about SCT. The emotions often came from not wanting to think or talk about the intensity or negative aspects that would come along with SCT treatment (e.g., having to miss school, take medications). One parent described her child stopping the conversation about SCT by stomping off: “So we kind of talked about it, and she didn’t like it . . . And then sometimes she didn’t, or she’d stomp off and she’d get mad . . .” (Parent 03). The youth of this parent described it being easier to talk with her friends about SCT: “. . . they don’t know the full weight of the situation (Youth 03, 13 years of age). They can give you advice based on what you’ll be happy about doing, not about the weight in it.” Another parent described a time when her child did not feel like talking with her about SCT in that particular moment, “One of the times, she completely shut me down, ‘but I (youth) don’t want to talk about it’” (Parent 02).

Youth decision-making involvement was also limited when there were conflicting opinions between youth and their parents. There were not conflicting opinions around whether or not the youth would have SCT treatment, but rather other aspects that came along with SCT (e.g., scheduling of SCT, navigating social restrictions). One parent acknowledged her child may not fully share her thoughts because her child likely felt their opinions were different from each other:

She’s pretty upfront with things when it comes to it. But I feel like she may not say things because she knows that I may want it, or I feel different. So whatever it is, she probably won’t tell me ever. (Parent 02)

Another parent described a difference of opinion around their child’s role in the SCT decision, “And so she was like, ‘This is my decision, it’s my life.’ And I’m like, ‘Not this one’” (Parent 03).

Subtheme: Being Open and Honest With Each Other (Facilitator).

Youth decision-making involvement occurred when youth were supported by their parents. This support came in the form of openness and honesty: “I mean, we were super open with him to begin with, even with his brother, with what was going on . . . We didn’t hide anything . . .” (Parent 10). Another parent talked about the honest approach she took when engaging her child in decision-making, “Well, so I would talk to her about it like up front. Not sugar-coat anything. Just tell her the truth . . .” (Parent 06). One parent described how open dialogue allowed her to know what her child was thinking:

. . . You always leave that door open for them to say, “Yes, I want to do it,” or, “No, I’m scared.” That’s how you get to know where your child is mentally and it gives you the opportunity to help them in those areas. (Parent 01)

The child of this parent (Youth 01, 9 years of age) recognized his parent’s openness and described a comfort when talking with this mother about SCT, “It makes me feel better.”

In the observations, it was evident that supportive and open body language facilitated youth involvement in decision-making behaviors. Nonverbal actions of support included holding hands, sitting next to each other, and looking at each other. Verbal actions of parent openness in the observations included parents engaging in dialogue related to sensitive issues with their child in the room. A mother was not afraid to ask questions about fertility side effects with her child in the room, and also asked what if SCT does not work? (Observation 03, 13 years of age). Another mother was openly talking about concerns of body image and mental health issues with her child in the room (Observation 02, 12 years of age).

Subtheme: Appreciating Youth Role and Voice (Facilitator).

Youth decision-making involvement occurred when parents appreciated youth’s role and voice throughout the process. This appreciation of youth voice often occurred through some parents prompting the youth to give input or ask questions. One parent acknowledged the value of their child’s input when it came to the timing of proceeding with SCT: “. . . She says she wants to get it, and if it’s possible, she would like to get it before her birthday in June. And that’s what we’re going to do now . . .” (Parent 06). Another parent sought their child’s input by giving their child options around the SCT experience, but not necessarily the decision of having a SCT: “[I] gave him the option, ‘Hey, you want to cut it off now or just let it fall out [referencing the youth losing his hair during SCT]?’” So he chose to leave it and let it fall out on its own (Parent 09). An appreciation for youth voice was present during the observations through parents prompting their child to ask the doctor questions.

Many parents appreciated their child’s voice and role in the decision-making process by seeking the youth’s assent for SCT: “But I still left it up in the air for him to decide like, ‘This is what you want to do?’ And he’s like, ‘Yeah, Mama’” (Parent 01). Another parent described how she wanted to hear her child voice that she was on board with SCT,

I mean, I definitely asked her. I said, “Are you sure? You heard 6–8 weeks. You heard 6 months. You heard you’re not going back to school. You heard all of that. So you’re still sure that you want to do it?”. And she said, “Yes, absolutely . . .” (Parent 03)

Several youths recognized parents asked and wanted their assent. One youth said she was involved in decision-making by her parent “just asking me if I wanted to do it or not” (Youth 02, 12 years of age).

Discussion

Our study identified barriers that impede youth decision-making involvement in real-time SCT decisions as it relates to youth and parents seeking information/opinions, expressing information/opinions, and discussing SCT with each other. We identified parent hesitancy to talk about potentially undesirable consequences of SCT, a lack of confidence in youth and parent engagement abilities, and youth’s heightened emotions and conflicting opinions as barriers. We also identified that parents may facilitate youth decision-making involvement in the SCT decision by focusing conversation on youth’s preparation for and interests surrounding SCT, attending to youth’s communication needs and preferences, and being open and honest.

Parents acknowledged youth’s values in the decision-making process and wanted to ensure youth were onboard with the decision ultimately made. We found that youth commonly gave opinions and asked questions when prompted by their parents to do so, but the youth were also motivated to engage without prompting if it was a topic that aligned with their values, or they felt strongly about. For example, common topics of interest among youth were the timing of when SCT might occur in relation to life events important to them, how they might physically and emotionally feel during SCT, and how their daily life might change based on the isolation requirements and medications they are expected to adhere to after SCT. Similar values and topics of interest were found in a previous study investigating decisional conflict in the SCT decision (Schulz, Patterson Kelly, Armer, & Ganong, 2021; Schulz, Patterson Kelly, Holtmann, & Armer, 2021).

We found some parents are reluctant to talk with their child about the negative things that come along with SCT (e.g., side effects, missing social events, having to take medication) for fear they might worry or cause their child distress. The parents that did talk with their child about these things did so to ensure the child was prepared and knew what to expect with SCT treatment. Young and colleagues (2003) also found this tension in managing communication with young people, discussing the difficult task parents have of informing their child yet protecting them. Positive and negative youth-reported outcomes that result from sharing health information with youth should be studied in future prospective studies.

Open and honest communication as a facilitator to youth and parents seeking information/opinions, expressing information/opinions, and discussing SCT with each other is consistent with previous research. Youth’s preference for wanting honest and straightforward information has been described in pediatric oncology when exchanging information related to their cancer diagnosis and treatment (Coyne et al., 2016; Kelly et al., 2017; Mant et al., 2019; Smith et al., 2019; Young et al., 2003). Moreover, there is a comfort that has been described by youth with cancer and other chronic illness when they hear this type of information from their parents or discuss this type of information with their parents (Coyne et al., 2016; Mant et al., 2019; Smith et al., 2019; Young et al., 2003). Youth have also described a trust in their parents to know what information they can handle (Kelly et al., 2017). Open and honest youth–parent dialogue may alleviate the various emotions youth experience in the decision-making process and should be explored further.

We identified that parents were uncertain of youth’s capability to participate in decision-making involvement due to the complex decision and high-risk nature of SCT. In the interviews, some youth were even unaware that asking questions and giving opinions meant that they were actively engaging in treatment decision-making. Yet youth demonstrated engagement abilities and decision-making in the SCT consultation observations. They asked relevant questions, gave rationale for their opinions, and stated pros and potential side effects of SCT accurately. Our findings support the shift in pediatric decision science that advocate for youth to be involved in their health care decisions based on their abilities and the appropriateness of the situation (Adams et al., 2017; Miller, 2018; Solar & Irwin, 2010). Young and colleagues (2003) found youth’s age was not a useful indicator of communication preference in those with life-threatening chronic illnesses. As this shift of involving youth continues to evolve, strategies to assess and effectively address youth’s individual communication preferences and needs will be important.

Some of the individual youth communication needs our youth–parent dyads reported were having a relaxed, non-distracting environment, engaging on multiple occasions and in small increments, and a preference for their mode of expressing themselves (e.g., texting, drawing). Other preferred modes of information exchange that have been described by youth with cancer have included books, videos, and audiotapes (Hokkanen et al., 2004). Playing games and engaging in more interactive ways have also been described as preferred by youth (Mant et al., 2019).

Study Strengths and Limitation

Our findings contribute a greater understanding of youth–parent decision-making interactions in real-time SCT decisions and discussions. We collected actual and self-reported barriers and facilitators using existing frameworks to guide data collection and analysis including the Theoretical Domains Framework (Cane et al., 2012) and Miller and Harris’s (2012) concept of youth decision-making involvement. Our observations were much longer (on average 40 min) than our interviews (youth interviews averaged 7 min and parent interviews averaged 14 min) due to the focused interview guide. We ultimately reached data saturation with our combination of qualitative data collection methods increasing validity and credibility of our findings (Morse, 2015). In addition, the observation data allowed us to capture real-life illustrations that we would not have been able to gain from interview techniques alone. An example of such data is the youth’s demonstration of their capability to engage in decision-making involvement during the observation encounters. An observation collection guide and interview guide provided consistency in data collection and increased dependability of our findings (Colorafi & Evans, 2016).

While we were able to recruit a sample diverse in race/ethnicity, youth age, and parent educational level, our sample was limited to parents who identified as mothers and youth with nonmalignant disorders. We were open to recruiting up to two parents per youth to account for diversity within family units and increase opportunity for male and female guardians to participate, but only the mothers consented to participation. Female guardians are more often recruited in child and family research, with some of the challenges of recruiting fathers described by other researchers (Keys et al., 2019). Future research should include an intentional father-inclusive recruitment plan and research design. Recruiting those with cancer and malignant disease in real-time SCT decisions was challenging due to patients being too ill to participate at the time of recruitment. This barrier should be acknowledged as we move forward with addressing the other barriers we identified to youth decision-making involvement.

Conclusion and Implications for Practic

Our findings emphasize the critical role parents take in facilitating youth involvement in health communication and treatment decisions. A role of pediatric health care providers and psychosocial team members is to provide parents with anticipatory guidance in caring for their child and navigating conversations about health. Such anticipatory guidance should include that some youth want to be informed and involved in treatment discussions and some do not. Asking and acknowledging their youth’s health communication preferences and needs is essential before exchanging health information with them. Encouraging and potentially training parents to communicate openly, honestly, and at a level their youth will understand can better engage youth in their health care and treatment decisions.

Biographies

Author Biographies

Ginny Lynn Schulz is a pediatric nurse practitioner and instructor of pediatrics at Washington University School of Medicine in St. Louis, Missouri, USA. Her clinical interest is in stem cell transplant and cellular therapy, with her program of research focused on pediatric and family communication and treatment decision-making. Her recent publications include “Youth Decision Making Involvement Behaviors in Real-Time Stem Cell Transplant Decisions” in Pediatric Blood and Cancer (2024, with D. Kleissler, S. Shenoy, A. McQueen, & J. DuBois), “Oncology Clinicians’ Perspectives on Online Patient Portal Use in Pediatric and Adolescent Cancer” in Journal of Clinical Oncology Clinical Cancer Informatics (2023, with B. A. Sisk, C. Bereitschaft, M. Enloe, J. Mack, & J. DuBois), and “Interdependent Functions of Communication With Adolescents and Young Adults in Oncology” in Pediatric Blood and Cancer (2022, with B. A. Sisk, M. Keenan, E. C. Kaye, J. N. Baker, J. W. Mack, & J. M. DuBois).

Angela Christine Painter is an assistant professor at Barnes Jewish College-Goldfarb School of Nursing Saint Louis Missouri, and a doctor of philosophy candidate at Liberty University Lynchburg, Virginia. She currently teaches Fundamentals of Nursing at Barnes Jewish College-Goldfarb School of Nursing. She is pursuing her PhD in Nursing Education. Her dissertation focus is on faculty perceptions using videos as teaching methods for basic nursing skills. Prior to joining the faculty at Goldfarb School of Nursing, her primary focus was pediatric nursing. Her work on this project has enhanced her drive to increase nursing research in every field.

Amy McQueen has applied social psychology and health behavior theory to the development, implementation, and evaluation of behavioral interventions designed to increase individuals’ preventive behaviors such as cancer screening and smoking cessation. She has a particular interest in understanding the causal mechanisms underlying the inter-relations between health behaviors and cognitive, psychosocial, and environmental determinants. She has experience with qualitative and mixed methods to understand individuals’ health risk perceptions, develop and evaluate reactions to health risk messages, and inform the design of behavioral interventions. Other interest areas include risk perceptions, health communication including narratives, patient–physician communication, qualitative research methods and analysis, and usability testing/user-centered design. Her recent publications include “Behind Closed Doors: Physician-Patient Discussions About Colorectal Cancer Screening” in Journal of General Internal Medicine (2009, with L. K. Bartholomew et al.), “Improving Adherence to Colorectal Cancer Screening: A Randomized Intervention to Compare Screener vs. Survivor Narratives” in Journal of Health Communication (2019, with M. W. Kreuter, C. A. Caburnay, & J. Sefko), and “Perceptions of Health Coaching for Behavior Change Among Medicaid and Commercially-Insured Adults” in Health Promotion Practice (2020, with M. W. Kreuter, M. Loughran, T. Thompson, & T. Poor).

Shalini Shenoy has served as the medical director of the pediatric stem cell transplant and cellular therapy programs at St. Louis Children’s Hospital since 2007 and has been involved in the development of institutional and multicenter clinical trials related to transplantation and cellular therapy in malignant and non-malignant disorders. Her research focus includes transplantation for non-malignant disorders particularly hemoglobinopathies and marrow failure syndromes. She is particularly interested in reducing therapy-related toxicity while optimizing cure and ensuring systematic long-term follow-up to define late benefits and toxicities. Toward this, she has worked to develop radiation-free protocols of reduced intensity conditioning while expanding donor source options as well as define long-term follow-up protocols after curative therapy in multicenter and consortium settings. Her recent publications include “Abatacept is Effective as GVHD Prophylaxis in Unrelated Donor Stem Cell Transplantation for Children With Severe Sickle Cell Disease” in Blood Advances (2020, with A. Ngwube, N. Shah, K. Godder, D. Jacobsohn, & M. L. Hulbert), “Late Effects Screening Guidelines after Hematopoietic Cell Transplantation (HCT) for Hemoglobinopathy: Consensus Statement from the Second Pediatric Blood and Marrow Transplant Consortium International Conference on Late Effects after Pediatric HCT” in Biology of Blood and Marrow Transplantation (2018, with J. Gaziev et al.), and “Long-Term Organ Function After HCT for SCD: A Report From the Sickle Cell Transplant Advocacy and Research Alliance” in Transplantation and Cellular Therapy (2023, with E. Stenger et al.).

James M. DuBois is the executive director of the Bioethics Research Center and the Steven J. Bander Professor of Medical Ethics and Professionalism at Washington University School of Medicine. He completed doctoral degrees in philosophy and experimental psychology before moving into the field of bioethics. He is the founding Editor (with Ana Iltis) of Narrative Inquiry in Bioethics: A Journal of Qualitative Research, published by Johns Hopkins University Press. His research interests include empirical research on ethical issues including informed consent, data sharing, organ transplantation, genetic testing, research integrity, and professional misconduct; research ethics in mental health; and assessing ethics education outcomes. Her recent publications include “Exchanging Words: Engaging the Challenges of Sharing Qualitative Research Data” in Proceedings of the National Academies of Sciences (2023, with J. Mozersky, M. Parsons, H. A. Walsh, A. Friedrich, & A. Pienta), “An Overarching Framework for the Ethics of Artificial Intelligence in Pediatrics” in JAMA Pediatrics (2024, with B. A. Sisk, & A. L. Antes), and “Evaluating Apol1 Genetic Testing Policy Options for Transplant Centers” in Clinical Journal of the American Society of Nephrology (2024, with T. McIntosh, H. Walsh, K. Baldwin, A. Iltis, S. Mohan, D. Sawinski, & M. Goodman).