“I think parents shouldn’t be too pushy”: A Qualitative Exploration of Parent and Youth Perspectives of Youth Decision-Making Involvement in Starting Continuous Glucose Monitoring

Abstract

Purpose.

The purpose of this qualitative study was to explore parent and youth perspectives of the decision-making process to start continuous glucose monitoring (CGM).

Methods.

Youth with type 1 diabetes and their parents were assessed with semi-structured interviews before adding CGM to their regimen and 2 months after device initiation. Interviews focused on parent, youth, and provider decision-making roles and suggestions for enhancing youth DMI. Data were coded and analyzed using thematic analysis.

Results.

Youth (N = 41; 13.7 ± 2.9 years) were categorized into decision-making roles: 1) youth primary decision maker (54.8%); 2) youth primary decision maker with parental influence (14.3%); 3) parent primary decision maker with youth agreement (26.2%); and 4) parent primary decision maker without youth agreement (4.8%). Participants described that clinicians provided information, recommended CGM, and gave support. Recommendations to enhance youth DMI included that youth should ask questions, express opinions, and do their own research. Providers should give unbiased information and use visual aids (e.g., show the device and videos) to engage youth.

Conclusions.

Participants agreed that whereas youth should have a primary role in the decision about CGM, parental and provider support is critical. Parents and providers can facilitate dialogue by directly engaging with youth about their thoughts, feelings, and concerns. Provider use of visual aids may enhance youth engagement and expectations.

Continuous glucose monitoring (CGM) has the potential to facilitate diabetes management by optimizing glycemic control.^1–5 Clinical effectiveness and satisfaction with CGM are associated with device usage frequency.^2,3,6 Furthermore, for CGM to be clinically effective, there must be near daily use of the device.^2,3 Youth, however, are less likely use CGM consistently than adults are.^1,3,7,8

While CGM has the potential to improve health outcomes for youth with type 1 diabetes (T1DM),² burdens (e.g., pain, inconvenience, or adverse skin issues) may inhibit or discourage usage.⁹ As such, consideration of youth and family preferences is imperative when considering adding CGM to a youth’s regimen.² A consensus statement released in 2012 recommended collaboration among youth, parents, and providers in deciding to pursue CGM.² Greater youth decision-making involvement (DMI) around CGM has been linked to better adherence (i.e., daily CGM use), greater self-efficacy around CGM usage, and fewer perceived hassles.¹⁰ Whereas qualitative studies have examined the burdens and benefits of CGM for youth,⁹ prior research has yet explore the nuances of youth and parent experiences with the decision-making processes around pursuing CGM. A deeper understanding of how youth, parents, and providers interact around the decision would be helpful in generating clinical strategies for enhancing youth DMI.

The purpose of this qualitative study was to describe the variety of youth and parent experiences and perspectives around CGM decision-making roles. Specific domains explored included youth and parent perceptions of their roles in the decision-making process; perceptions of provider behaviors in relation to the decision-making process; and suggestions for enhancing youth involvement in the decision-making process.

Research Design and Methods

Research Design

Youth and their caregivers (hereafter referred to as “parents”) were recruited as part of a mixed-method, multi-reporter study of youth DMI about CGM.^10,11 Data in the present study were gathered from the qualitative portion of the overarching study. Baseline interviews with youth and parents prior to youth initiating CGM, and Follow-up interviews with participants approximately two months after CGM implementation.

Recruitment and Enrollment

Recruitment for the mixed-method multi-reporter study took place between June 2017 and April 2019 at the Diabetes Center for Children at Children’s Hospital of Philadelphia and the pediatric endocrinology clinic at UF Health Shands Children’s Hospital. Eligible youth were between the ages of 8 and 17 years, had T1DM for at least 6 months, used a pump or basal-bolus multiple daily injection insulin regimen, and were adding a Dexcom G4/G5 or G6 CGM to their treatment regimen. Exclusion criteria included: at home use of CGM with real-time glucose feedback in the six months preceding study enrollment, cognitive delay requiring school accommodations, or psychiatric hospitalization in the past year. All participants were English-speaking. Participants were identified via weekly reports of patients for whom a letter of medical necessity for CGM had been uploaded into the medical record and by review of outpatient clinic schedules. Potentially eligible parent-youth dyads (n = 163) were contacted by telephone for screening and verbal permission/assent. Ultimately, 130 (79.8%) were eligible and enrolled in the study.

Following study enrollment, researchers used random number generation, stratified by glycemic control (</=8 or > 8), age (8 to 10, 11 to 13, and 14 to 17), and sex, to select 54 (41.5%) dyads to engage in semi-structured interviews in addition to the questionnaires. Dyads who were randomized to the qualitative interview group did not differ from those in the questionnaire-only group with respect to demographics (youth age, sex, race, ethnicity, duration of diabetes; family income; and family structure), baseline A1C, or parent or youth-reported blood glucose monitoring frequency. Six (11.1%) of the 54 dyads were withdrawn by study personnel because they no longer met eligibility criteria, did not start CGM within the study timeline, or were lost to follow-up. The number of dyads selected for the semi-structured interviews (n = 48) was well above the interviews typically required for thematic saturation.^12,13

Procedures

The study was approved by the institutional review board at the Children’s Hospital of Philadelphia. Parents and youth separately completed two interviews over the phone, one at Baseline prior to starting CGM, and one at Follow-Up, approximately two months after starting the device. Interviews were conducted by two Masters-level research assistants (RAs) whom the senior author trained to conduct qualitative interviews. In addition to reading articles about qualitative interviewing, the RAs received feedback from the senior author on their first two interviews. RAs recorded interviews using recording software on designated study laptops. Audio recordings were transcribed via a transcription service with an average turnaround time of 11.2 days from the interview date. Transcripts were uploaded into the NVivo 11 software.¹⁴ Youth and parents were compensated for their time with MasterCard gift cards.

Measures

Demographics Questionnaire

Parents completed a demographic questionnaire at Baseline. Youth data included gender, age, race, ethnicity, and date of diagnosis. Parent data included gender, age, race, ethnicity, highest educational grade, income, employment status, marital status, and family structure.

Semi-structured Interview

Semi-structured interviews addressed several topics relevant to perceptions of decision-making about adding CGM to youth treatment regimens. Interview questions relevant to the present analysis focused on Baseline perceptions of youth, parent, and provider roles in the decision to begin CGM (e.g., “Overall, how would you describe your role in the decision about adding CGM to your regimen?”) and responses at Follow-Up regarding strategies that could be employed to enhance youth involvement in the decision to add CGM (e.g., “What are some things that parents can do to make sure children/teens are involved in the decision?”).

Medical Record Review

Research personnel completed a medical record review after both Baseline and Follow-Up to document A1C.

Coding and Analysis

Interview transcripts were loaded into NVivo and were coded by two study team members. The first step in the analysis process was to develop a coding structure. Two research staff members read transcripts for three complete dyads and generated an initial coding scheme. The lead investigator then read the transcripts for these dyads, reviewed the draft coding schemes, and integrated the draft coding schemes into one coding structure. The two research staff members read additional transcripts and proposed alterations and additions to the coding structure until agreement on a final coding scheme was reached with the lead investigator. The two research staff members then proceeded with final coding. To ensure dependability of the data, we aimed to double code 20% of the transcripts from participants who were selected for the semi-structured interviews.¹⁵ Ultimately, 27.2% of youth transcripts (n = 22) and 29.8% of parent transcripts (n = 25) were double-coded. Throughout the coding process, the research team met weekly to discuss any coding questions or additional codes that might be needed.

The second step of the analysis was to review the coded data to develop themes in the domains of interest. For each domain (parent-youth decision-making roles, provider roles, and strategies to enhance youth involvement in decision-making about CGM), one research staff member summarized the responses for each participant/dyad and generated key themes based on the summaries across all participants/dyads. The lead investigator then reviewed the summaries and the themes to ensure consensus. Additionally, the authors explored whether the parent-youth decision-making roles varied by days of use at Follow-up and A1C at Baseline and Follow-up.

Results

Participants

Forty-eight dyads were randomly selected for the semi-structured interviews, but not all participants completed them. At Baseline, 40 parents and 41 youth completed interviews. At Follow-Up, 41 parents and 43 youth completed interviews. Demographics are shown in Table 1.

Table 1.

Demographic, Diabetes, and CGM Characteristics for Participants who Completed the Baseline Interview (n = 42)

Variable	n (%) or mean ± SD, range
Institution
Children’s Hospital of Philadelphia†	42 (100)
Youth age (years)	13.7 ± 2.9, 8–17
Youth sex (female)	18 (42.9)
Youth race
White	32 (76.2)
African-American	6 (14.3)
Asian	2 (4.8)
Other	2 (4.8)
Youth Hispanic ethnicity (yes)	3 (7.1)
Parent sex (female)	39 (92.9)
Income
< 20,000–39,999	6 (14.2)
40,000–59,999	3 (7.1)
60,000–79,999	5 (11.9)
80,000–99,999	4 (9.5)
More than 100,000	24 (57.1)
Refused	0 (0)
Parent education
Some or completed high school	9 (21.4)
Some college or technical school after high school	4 (9.5)
College graduate	12 (28.6)
Some post-college graduate education	1 (2.4)
Masters, PhD., MD, law degree, etc.	6 (14.3)
Parent employment status
Not currently employed	10 (23.8)
Working part-time	9 (21.4)
Working full time	23 (54.8)
Family structure
Two parent	29 (69.0)
Two parents (step-family)	5 (11.9)
Single parent	8 (19.0)
Diabetes duration (years)‡	5.48 ± 4.24, 0.47 – 16.1
Baseline A1C (%)	8.46 ± 1.85; 5.2 - >14
Dexcom device type
G4/G5 with receiver	3 (7.1%)
G5 with smart phone	15 (35.7%)
G6 with receiver	3 (7.1%)
G6 with smart phone	18 (42.9%)

^†Although participants were recruited from University of Florida Health Shands Children’s Hospital, none completed the qualitative interviews.

^‡There was one participant whose parent indicated that the duration of diagnosis was ≥ 6 months during screening, but medical chart review at a later date indicated duration of diagnosis was 5.5 months. We opted to retain this participant in the analysis.

Decision-Making Roles

Based on the review of the themes, the research team decided to categorize youth into four mutually-exclusive decision-making roles, based on both parent and youth interview responses. Two team members independently assigned youth to one of the four categories; they then discussed and addressed discrepancies in assigned categories. The four categories were as follows: 1) Youth primary decision maker; 2) Youth primary decision maker with parental influence; 3) Parent primary decision maker with youth agreement; and 4) Parent primary decision maker without youth agreement (Table 2). Decision-making roles did not vary by days of use at Follow-up, nor A1C at Baseline or Follow-up.

Table 2.

Representative Quotes Regarding Decision-making Roles

Sub-theme
1. Youth Primary Decision Maker
“Because it’s – you know, it’s his body and I respect that, and it’s already been hard enough for him to have to set, you know, it’s like over the past year we’re, like, dealing with it and what not. So, you know, I respect my child’s right to choose what he’s doing to manage his diabetes.” (Parent of youth age 10)
“I’ve been really responsible with my diabetes, so my parents trust me a lot with it, and I think that they figured that if I was going to be worried about maintaining things with it or maybe not comfortable with it yet, they didn’t want to make me uncomfortable and then have me not be as good about my diabetes.” (Youth, age 17)
2. Youth Primary Decision Maker with Parental Influence
“And then - they always kept me informed. And then mom always kind of was, like, trying to, like, suggest it because she knew it would be good, but never really, like, forced me into anything.” (Youth, age 14)
“Initially, like, it was - hers was a pretty passive role. Like she was just listening to us. Like she didn’t really have a real active role in it. But, you know, I think she ultimately would have been okay just going along as is for a while, but then, you know, I kept bringing it up and, you know, “Let’s talk about this. Let’s talk about this. Let’s learn about this.” You know, but I think initially she had a pretty passive role in the whole thing.” (Parent of youth age 14)
3. Parent Primary Decision Maker with Youth Agreement
“Up until this point, we really did leave it up to her. She’s young and adjusting to this has not been an easy adjustment for her. She is kind of emotional about it and she’s – she did agree to a clinical trial, but given the amount of discomfort that she had, she refused to continue. But now that she’s getting older and she really is unaware of her hypoglycemic events, it’s very scary to have her at school or in a class now that she’s at the age where she wants to go participate in activities outside of the house. You know, we told her that this – this is something that she has to do now.” (Parent of youth age 8)
“Like, I mean, that was basically it. I mean, just to make sure that I agreed with actually doing this rather than, like, not wanting to - not wanting to have CGM. I think that’s basically it. There wasn’t really much - I think the main role for me in CGM was to just use it for better blood sugar control, I guess and assure my parents that I was on board with using it.” (Youth, age 16)
4. Parent Primary Decision Maker without Youth Involvement
“It wasn’t really my choice altogether at first, but I was asked about my opinion on it.” (Youth age 16)
“I mean, at first when we spoke to him in the office with [provider name], you know, getting upset, he started crying, so the doctor said, okay, well, we’ll give you - you know, I’ll give you another chance and then see what happens. [Provider name] said, you know what, we can’t, you know, keep this up. You’re already 13 years old, you’re about to be 14, the best thing that we could right now is I think for you is to get the CGM. You know, and he’s still not happy about it, but he tells me well, I got no choice because of you. You made the decisions, and I said, well, yeah. But I mean, I constantly have to be asking him how much is your blood sugar? Check your blood sugar. Please check your blood sugar. Please get your blood sugar. He’ll be eating and oh, I forgot to check my blood sugar. Or I forget to do the pump, I can’t be worried about this, so I can’t.” (Parent of youth age 13)

Youth Primary Decision Maker

For this role type, parents and youth concurred that youth led the decision to begin CGM (n = 23, 54.8%). While parents were involved in decision-making about CGM in this category, their involvement centered on suggesting CGM and providing information. Parents in this category did not pressure or force their youth into agreeing to the device. Several youth mentioned that although their parents brought up CGM on multiple occasions, they emphasized that it was the youth’s choice and waited until the youth was ready to make the decision. Parents expressed several reasons for entrusting youth as the primary decision maker, including bodily autonomy, youth competence, trust, and their youth’s need for independence. Similarly, youth who were primary decision makers expressed that their parents and providers trusted them to make the decision about CGM because they were responsible in managing their diabetes.

Youth Primary Decision Maker with Parental Influence

Youth in the second category (n = 6, 14.3%) were also the primary decision makers, but their parents pushed, nudged, or persuaded them to start CGM. Youth and parents in this category seemed to differ in their perception of degree of parental influence. Relative to their parents, youth understated how much their parents nudged them towards CGM. For example, some youth did not explicitly say their parent pushed them but did mention that they suggested it. However, parents perceived their role in the decision-making process as more substantial. For example, some parents indicated that they tried to nudge or influence their youth into deciding in favor of CGM, nonetheless emphasizing that the final decision was up to the youth.

Parent Primary Decision Maker with Youth Agreement

In the third category, parents and youth perceived parents as being the primary decision maker, with youth playing a passive role (n = 11, 26.2%). Parents explicitly told youth that their preference was for the youth to begin CGM or that the parent would make the final decision. Some parents in this category expressed concerns about their youth’s ability to manage their glycemic levels when away from their parents (e.g., at school or during out-of-school-time activities). In addition to agreeing to CGM, some youth in this category indicated that their parents actively sought their opinions to make sure they did not have any objections.

Parent Primary Decision Maker without Youth Agreement

In the final category, youth had a minimal role in deciding to begin CGM (n = 2, 4.8%). Parents in this category expressed that youth were not allowed to make the decision due to the youth’s poor diabetes management (e.g., forgetting to check blood glucose). Youth in this category expressed not wanting CGM. Whereas youth did not directly express to researchers that they fought or argued with their parents about having to implement CGM, parents reported that there was turmoil around the decision to begin CGM.

Provider Behavior in the Decision-making Process

Themes from parent and youth interviews suggested four aspects of providers’ behaviors related to the decision to begin CGM: 1) Provision of information; 2) Recommendation to try CGM; 3) Provision of support; and 4) Impact of provider’s personal use of CGM (Table 3).

Table 3.

Representative Quotes Regarding Provider Behaviors in the Decision-making Process

Sub-theme
1. Provision of Information
“They just – they – whenever I had a question about it, they answered my questions about it. They had like an unbiased role, but they told me why it would help and why it could possibly be – not a negative effect, but what could be bad about it as well.” (Youth, age 16) “So she kind of talked us through, you know, what the benefits were, especially during the school day and how the technology kept moving and - but she was also very easygoing, but you know, some people are okay with just doing finger sticks all the time, and that’s okay too. So, she - she highlighted all the benefits, but I think at the same time didn’t - she wasn’t forceful about, this is something you need to do, and you really have to do this. She was very neutral, kind of, about the pros and cons of, you know, doing the CGM or not.” (Parent of youth age 13)
2. Recommendation to try CGM
“They told it - they told me that it would be a good way for me to manage my diabetes because I don’t like to take my blood sugar, and it kind of eliminates the process of taking it almost.” (Youth, age 16) “She was just basically just - well initially it was more so as trying it as like another option to try to get us, again, a better look at what his ranges are, but she was really, like, strongly encouraging it, just because, you know, again, because for all of us, we just, we want to know or get a clear picture of what his blood sugars really are. So, she was really, like, adamant about him trying it - at least trying it to see if that’s something that’ll work.” (Parent of youth age 16)
3. Provision of Support
“She was basically there to tell me that one that it was a really good idea to pair with my Omnipod. Two, that they would help me set it up and learn how to use it very, and she said that you would be in - I would be in good hands trying to learn how to use it - use it effectively. And she said that - she said she would get everything set up, and she said she was totally on board with using it, and my mom was too. So, she was also there for reassurance, and she also just provided a lot of information about it that I didn’t know.” (Youth, age 16) “You know, it was her decision and constant encouragement because I - as I said, we absolutely love [name of provider], and we love how caring she is, and she’s cheering for us, and whenever we come up with A1c and then she would always - when it’s a little bit elevated especially after the summer after travels, she would say, “Okay guys, we need to bring it down”, and you know - and then - it was like a teamwork for us.” (Parent of youth age 16)
4. Impact of Provider’s Personal CGM Use
“So, the nurse that we went to talk about CGM is a CGM user herself, and she explained like what CGM is, how it…like the basics of how it works, and how often you should change it and such, supplies would be, and anything else.” (Youth, age 17) “He was a major influence, I think, to [child’s name] because he was a diabetic himself, and [child’s name] was very comfortable talking to him and asking him questions and amazed that he had this device and he didn’t even know it was on him. Like, oh, that he could do it too. It was a good firsthand.” (Parent of youth age 11)

Provision of Information

Youth and parents stated that providers gave a lot of information about CGM. Provider information came in various forms, such as through answering parent and youth questions, commenting on device pros and cons, and providing potential reasons that someone might find CGM helpful. For example, one parent reported that the provider discussed situations in which CGM could be useful for both parents and youth (e.g., describing how it could be helpful during the school day), but also mentioned that CGM was not the only option (e.g., for youth who do not mind finger sticks).

Recommendation to Try CGM

Parents and youth indicated that the provider’s role in the decision included recommending CGM. For example, some providers recommended that families try CGM, tailoring their recommendations based on the patient’s history or lifestyle (e.g., being able to check blood sugar while playing sports or reducing finger sticks). Whereas some providers provided a gentle recommendation, other providers were more aggressive or persuasive in recommending CGM.

Provision of Support

Youth and parents also described providers as supportive in the decision-making process about CGM. Providers were supportive in various ways, including by offering logistic (e.g., helping youth set up and learn how to use the device) and emotional support. Parents also appreciated the encouragement and the collaborative environment that their providers cultivated around CGM decision-making. One parent, for example, noted the benefits of feeling like their family and provider were a team dedicated to managing the youth’s diabetes together.

Impact of Provider’s Personal CGM Use

Some youth mentioned that their providers shared their own experiences with CGM in the context of explaining the how to use the device. This disclosure helped youth feel more comfortable with both the device itself (e.g., if their provider could use it, then they could too) and with communicating with the provider.

Suggestions to Enhance Youth Involvement in the Decision-making Process

Youth and parent suggestions for enhancing youth involvement in the decision to start CGM centered around three primary themes: 1) Decisions to start CGM should belong to the youth; 2) Youth should take an active role by voicing their opinions and seeking information; and 3) Providers and parents should give youth unbiased information about the device (Table 4).

Table 4.

Representative Quotes Regarding Suggestions to Enhance Youth Involvement in the Decision-making Process

Sub-theme
1. Decision to Start CGM Belongs to Youth
“I think just taking responsibility and understand that this is their decision and this is, you know, their life, and it affects them and not, you know - not, I guess like trying to please their parents or trying to please their provider. Just understanding that it’s ultimately their decision and their life and taking responsibility for that.” (Youth age 17) “I don’t know. I mean, I guess just being supportive of them and not - I don’t know, to me if you’re forcing kids to do stuff, they’re just going to push back, so–” (Parent of youth age 15)
2. Youth Should Take an Active Role by Expressing Opinions and Seeking Information
“I think mainly just make sure you’re speaking up. Don’t let your parents have - or like, your parents and your doctors have just a discussion about it. Like, make sure you’re making your voice heard to them, and don’t just, like, sit by while they watch, and like, watch while they’re making, like, a really big decision about your life.” (Youth, age 14) “Yeah, I think it’s really just having conversations and not being - let them express how they feel first. Just, you know, sit back and listen and let them tell you how their feeling about, you know, the diagnosis and what’s kind of, what’s the most frustrating for them, and that kind of helps, I think, be able to make the determination whether to go to the CGM. And then, once you, you know, start that process, then there’s other questions that come up in that, about, you know, the pump, you know, what she chose.” (Parent of youth age 17)
3. Providers and Parents Should Provide Unbiased Information
“Maybe just like have the - like the thing that actually puts the site on them - I can’t think of the word for it, but like the applicator, I guess, and the site and the sensor to be able to show them the sizes and everything so that way they can get an idea in their head about what it looks like and how it might feel.” (Youth, age 17) “She didn’t flinch, like, she didn’t scream out, it wasn’t - and I think that kind of eased her fears a little bit, you know, seeing - show them a video like that or something on a child, you know, who has it, you know. Kind of like reassure so that, you know, so they’re more trusting that, like, it probably won’t hurt, you know.” (Parent of youth age 10)

Decision to Start CGM Belongs to Youth

Youth and parents agreed that it should be the youth’s decision to start CGM. Several youth explicitly stated that parents should not force them to start the device, noting that the youth should take responsibility for their decisions. Parents agreed that either parents or providers forcing youth into a decision would result in pushback from youth. Although the overall sentiment was that the decision should be up to the youth, there were some caveats. For example, several parents indicated that the youths’ age, maturity, or responsibility in handling their diabetes should determine the youth’s level of involvement. One youth also mentioned that the parents’ role should be larger or smaller depending on where the youth is at developmentally.

Youth expressed that parents should be supportive and encouraging, and that parents should allow their youth space to consider what the best course of action is for themselves. Parents agreed that youth need support in making the decision. One way to support youth in their decisions is to emphasize to them that CGM is not the only option. Some parents suggested that youth may become more engaged with the understanding that that the decision is not permanent.

Youth Should Take an Active Role by Expressing Opinions and Seeking Information

The second theme that emerged from parent and youth suggestions was that youth should take an active role and that parents and providers can promote this more active role in several ways. Participants suggested that youth speak up about their opinions and concerns and ask questions. Youth cautioned that their voices may be lost in discussions between providers and parents, so it is important that they remain active in conversations. In turn, providers and parents can encourage youth to speak up by directly asking youth about their thoughts. Some youth mentioned that these conversations should occur in private. Regardless of where and how the conversation takes place, parents and youth emphasized the importance of parents and providers listening to youths’ thoughts, feelings, and concerns about their diagnosis and treatment options.

Another way for youth to take an active role was to seek information about the device, which would enable them to ask parents and providers more targeted questions. Parents emphasized that youth could get more information about the device by talking with peers about their experiences with CGM or asking other youth on online forums. As one parent explained, youth may feel more comfortable talking to peers than with adults about their experiences.

Providers and Parents Should Provide Unbiased Information

The final theme was that providers and parents should explain the device as thoroughly as possible, providing unbiased information to youth about the device, including both pros and cons. In addition to providing verbal information, youth and parents noted that it would be helpful for providers to use visual aids. Visual aids, such as showing youth a video of peers using the device, might help mitigate youths’ fears about the device. For example, one parent noted that after her daughter watched a video of a youth inserting a CGM sensor, her daughter realized that it would not be very painful. Parents and youth also suggested that providers could show youth the device itself in the office. Showing youth what CGM data look like on the smart phone app and allowing a trial run of the device before making a final decision would give youth an opportunity to see how the device might integrate into their lives.

Discussion

Youth assumed varying degrees of involvement in the process of deciding to start CGM. Most youth and parents agreed that youth were the primary decision makers. Youth in this category were perceived as competent and trustworthy in their diabetes management, with parents’ roles consisting of mentioning CGM or offering unbiased information. In contrast, there were some youth for whom parents were the final decision makers in pursuing CGM. These parents perceived their youth as less responsible in their diabetes management and noted the health consequences of poor control. Whereas these parents may have asked youth about their feelings towards CGM, youth were not the final decision makers. Taken together, these findings indicate that parental confidence in youth management ability and perceptions of health-related consequences of the decision may influence degree of youth involvement in the decision-making process relative to their parents. Irrespective of role type, many youth expressed reluctance to begin CGM initially. Parents and youth reported iterative discussions about CGM or noted that youth were presented with the option several times before deciding or agreeing to pursue CGM.

Parents and youth described several provider behaviors related to the decision-making process about CGM. Providers engaged with youth and parents in several ways, such as discussing pros and cons or recommending CGM as a beneficial addition to youth’s T1DM regimen based on lifestyle factors (e.g., providing freedom). Youth and parents underscored the importance of providers offering logistical (e.g., explaining device mechanics) and emotional (e.g., reassurance) support. Parents were particularly enthusiastic when providers cultivated a collaborative decision-making environment by framing themselves as part of a parent-youth-provider team dedicated to managing the youth’s diabetes. These findings align with prior research regarding the importance of patient-centered communication in pediatric settings.¹⁶

Some providers disclosed their own utilization of CGM. Self-disclosure was positively received, because it helped ease fears about the device and facilitated patient-provider dialogue. Whereas research on physician self-disclosure has primarily occurred with respect to adult patients, and is inconclusive in regard to its benefits, there is some evidence that self-disclosure may enhance patient satisfaction.¹⁷ Additionally, findings from the present study are consistent with findings from a retrospective study of adolescents considering intrauterine contraception wherein self-disclosure was found to help youth feel more comfortable.¹⁸

While parents and youth concurred that the decision to use CGM should generally rest with youth, participants viewed parental and provider support as critical. This finding is consistent with the broader chronic disease literature showing that adolescents desire a large role in decision-making about their care, in conjunction with parent and provider support.^19–22 Although there are specific instances in which parents may need to assume a larger role, such as for youth who are irresponsible in their diabetes management, usurping the decision entirely from youth may result in pushback or feelings of anger, powerlessness, and disappointment.¹⁹

Participants agreed that youth could facilitate their own DMI by speaking up, asking questions, and doing their own research. Parents and youth emphasized the importance of providers and parents actively and directly engaging with youth, such as by asking youth direct questions and presenting unbiased information. Relatedly, previous research suggests that parents occupy a unique position such that they can facilitate youth decision-making by providing information, such as pros and cons, relevant to their adolescent’s values and goals.¹⁶ Congruent with findings from previous research, some youth expressed that they may feel more comfortable having private discussions with their providers.²⁰ Parents and youth also emphasized the importance of providers using visual aids, such as showing videos of youth using the device, allowing youth to touch the device, and letting youth play with the phone app to connect with and engage youth. These suggestions are consistent with previous research indicating that using a variety of modalities to convey information may increase information comprehension related to youth medical decision-making.^23–25

Limitations

The present findings should be interpreted in light of several limitations. First, the sample consisted of predominantly non-Hispanic white participants from the Northeast, and the majority of parents were mothers. Only one brand of CGM was used in the study. Therefore, the results may not be generalizable to youth of other ethnicities, father-youth dyads, or youth using other CGM device brands. Second, because follow-up interviews were conducted two months after device initiation, there are no data related to long-term usage. A third limitation is that we did not assess provider perceptions of the decision-making process; providers are likely to have a unique perspective on the nuances of interactions between providers, parents, and youth when discussing CGM. Finally, although this study provided some insight into youth’s initial hesitancy to pursue CGM, no data were collected for youth and families who decided not to pursue CGM.

Clinical Implications

The findings from this study provide a foundation for the development of interventions that bolster youth DMI around CGM. Youth should be the primary decision makers in pursuing CGM and can facilitate their own involvement by speaking up in discussions, asking questions, and seeking information about the device, via Internet research or speaking with peers who have the device. Parents and providers can also facilitate youth involvement by speaking with youth directly and asking about youths’ thoughts and concerns regarding CGM. Providers can enhance youth’s willingness to engage in discussions and their comfort with the device by self-disclosure, use of visual aids, and by allowing youth to handle the device during appointments. Some youth may be more comfortable expressing their opinions in a private discussion with the provider. Parents and providers should be mindful that many youth who decide to pursue CGM may initially be hesitant. Through iterative, respectful, mutually engaging discussions, parents, youth, and providers can better understand each other’s perspectives and address concerns. Finally, CGM may not be appropriate for all youth in all circumstances (e.g., some youth may want to wait until devices are less obtrusive).

Directions for Future Research

Whereas this study explored a multitude of perspectives and factors around the decision-making process, future research across a greater timespan is necessary to determine which factors would be the most meaningful targets of intervention to increase adherence to CGM in the long term. Furthermore, researchers should explore youth DMI in more diverse samples (e.g., age, ethnicity) to better understand variations in decision-making processes across sub-groups of youth. As technology continues to advance and youth increasingly use CGM at earlier ages²⁶, understanding how decision-making transpires may be critical in determining which factors, for which youth, predict greater device satisfaction and long term CGM use.