Abstract
Little is known about health care provider perspectives on sharing decisions in a parent-adolescent-provider triad. This perspective is needed to develop tools for supporting shared decision-making (SDM) in a triad that involves an adolescent. To assess this perspective, we conducted individual interviews with pediatric health care providers. Trained study staff interviewed health care providers who work with adolescents with chronic conditions about their medical decision-making experience and key components of SDM. Interviews were transcribed, coded, and analyzed using thematic content analysis. Our analysis elicited 3 major themes: (1) roles of each triad member; (2) key aspects of triadic SDM components; and (3) essentials for triadic SDM with an adolescent. Providers discussed the importance of alignment between parents and adolescents and facilitating such alignment through preference discussions. We found that providers want to engage adolescents with chronic conditions and their parents and achieve alignment between these 2 parties, during shared medical decisions.
Keywords
Introduction
Over the last decade, research and practice in shared decision-making (SDM) have moved from a focus on relatively discrete decisions in which there is clear evidence of equipoise, to being considered the standard of care for a wide range of health care decisions.1,2 In recognition of the important role patient and family preferences and values play in determining what care is appropriate, SDM approaches are increasingly applied in situations once considered to have only 1 “right” option. 3 Despite this expanded application of SDM, SDM models, research, and measures remain rooted in a dyadic relationship between a patient and health care provider in which the health care provider shares the relevant medical information, the patient shares their values and goals, and together they work toward a decision. Even within pediatrics, most work in SDM focuses on decisions made between health care providers and parents, with minimal consideration for the role of the patient. 4 In fact, the authors of recent consensus recommendations intentionally chose not to address decision-making that involves adolescents and call for further work in the area. 5 Previous work examining triadic SDM typically involves caregivers and providers of older adults who tend to have expanded cognitive abilities, legal rights, and experience making medical decisions compared with adolescents. 6
The SDM is important for all adolescents but particularly for adolescents with chronic conditions, as SDM may improve both clinical and affective outcomes.7,8 Moreover, it is a crucial skill for adolescents with chronic conditions to develop prior to transitioning their care to an adult health care system. Although there are situations in which SDM with adolescents involves only a patient provider and a health care provider, eg, reproductive health care, most situations are appropriate for triadic decision-making in which a parent, adolescent, and health care provider work together to make a decision related to the adolescent’s care.
There is a paucity of research about physicians engaging with adolescents about decision-making generally. Studies that do exist focus on specific decisions or health conditions, limiting their broader applicability. For example, physicians of juvenile idiopathic arthritis patients initiated treatment decisions more often than families and presented limited treatment options, mostly based on their own preferences. 9 On the contrary, adolescents seeking gender-affirming care were often the ones to initiate treatment decisions.10,11 Without a more general understanding of health care provider perspectives on SDM in a parent-patient-provider triad, there is not a firm basis on which to develop approaches and tools for supporting SDM in such a setting. The lack of data may be part of the reason most decision aids for adolescent health concerns do not include specific strategies to engage the adolescent. 12 Given the lack of understanding about how triadic decision-making with an adolescent occurs in actual practice, we sought to understand health care provider perspectives on the process using individual qualitative interviews. Such an understanding is crucial for future research such as developing interventions to support and measure adolescent triadic SDM.
Methods
As part of a larger study aimed at developing a measure of triadic SDM, we conducted semi-structured, individual qualitative interviews with attending physicians or nurse practitioners (hereafter health care providers) who provide direct patient care to adolescents with chronic conditions at a large, midwestern, academic children’s hospital. This hospital is an internationally recognized patient care center and, thus, draws providers with diverse training and clinical practice experience. The study was approved by the local Institutional Review Board.
Sampling and Recruitment
We sent invitational emails to health care providers working in 6 clinical areas of a large, academic children’s hospital, using purposive sampling 13 to recruit providers with a range of specialties, years of clinical experience, races, and genders. We also used snowball recruiting, 13 asking participants to name colleagues who they felt had a different approach to decision-making. We then invited those individuals to participate. Recruitment continued until we reached thematic saturation, the point at which no new major themes were identified in 3 consecutive interviews. 13
Interview Guide Development
Based on prior work by our team14,15 and existing SDM literature,16,17 we developed a semi-structured interview guide (see Supplemental Material) and conceptual model of triadic SDM. In this conceptual model, SDM happens when adolescents, parents, and health care providers work together to make a decision about medical care. The core components of the model are information exchange, values engagement, and preference engagement. Interviews started with open-ended questions about the health care provider’s most recent treatment decision-making experience. We then shared our model, both visually and verbally, asked about their experience sharing decisions with adolescents and their parents, and about specific dimensions of our model. After the first 2 interviews, and then every 4 to 5 interviews, we edited the interview guide for clarity and to probe concepts emerging from early interviews. We collected demographic information from each participant.
Data Collection
Health care providers participated in a recorded, 1-time semi-structured interview conducted by study team members (EL, IKP, CA) with prior experience and training in qualitative interviewing. Although in-person interviews were offered, all participants chose to be interviewed via a secure web-conferencing platform. Verbal consent was obtained prior to initiating audio recording. Following the interview, recordings were transcribed. Transcripts were then verified and de-identified.
Data Coding and Analysis
The research team open-coded the first 2 transcripts to establish a preliminary coding structure considering both our conceptual model and concepts emerging from the data. Based on this initial coding, we developed a code book with definitions and examples that we modified as coding progressed, moving from inductive to deductive coding. Pairs of team members then independently coded interviews, compared their coding, and resolved differences through discussion, using established standards for qualitative research.13,18 After 6 interviews, coding was sufficiently consistent to have the remainder of interviews coded by a single coder. At the end, we re-coded the group coded using the full code book. All data was coded using Dedoose.
We used thematic content analysis19,20 to analyze the data with a focus on understanding health care providers’ perceptions and operationalization of SDM with adolescents and their parents. As coding progressed, we grouped individual concepts into themes. Once coding was complete, we considered how themes were associated with one another.
Results
Twenty-one health care providers from 6 different specialties participated. Twelve (57%) were female, and 16 (76%) were white (Table 1). As described below, health care providers articulated specific decision-making roles for themselves, their adolescent patients, and the patients’ parents. In discussing the process of SDM, health care providers explained aspects of SDM that they consider specific to a triad that includes an adolescent and requirements for successful SDM in that setting.
Clinician Characteristics.
Roles
Health care provider roles
Health care providers’ descriptions of their role in decision-making included skills and tasks related to being a guide, a facilitator, and an educator. The guide role is directly related to the medical decision and health care system; the facilitator role focuses on the interpersonal aspects of triadic decision-making; and the educator role ensures key information related to the decision is understood. As a guide, the health care provider presents information to the family, determines the decisions’ urgency, helps the family navigate the health system as needed, and, in many cases, offers a recommendation. One health care provider said, “. . . as far as the, like here are the paths forward, here is what we could do, I feel like I’m usually the one, you know, starting to lay those out” (011D). Health care providers serve as a facilitator of parent and adolescent participation when they help them find a common ground, ensure neither overly defers to the other, and keep the decision conversation open. This is exemplified by the health care provider who said, “I encourage [the family] to talk about [the decision] and to understand each other’s perspectives. I often help them identify a potential compromise and/or stepwise progression on how to change the plan.” (016D) The educator role focuses on ensuring that the parent and adolescent understand the medical information and evidence related to the decision and have the help they need to synthesize that data. For example, 1 participant said, “. . . if they don’t understand all the information, oftentimes, what I’ll do is, perhaps, repeat myself but in a different way. Sometimes, I will use paper to write things down because some individuals are visual learners” (012D).
Parent roles
The decision-making role that is most specific to parents, from the health care provider’s perspective is the one of authority. Although health care providers discussed the importance of adolescent participation in decision-making, they all mentioned that ultimately, both financially and legally, the parent is, as one said, “the ultimate decision maker” (021D). When conflict occurs between the adolescent’s and parent’s preferences, the authority is particularly relevant and may lead to the adolescent’s preference being overridden. Similar to their own role, health care providers feel that parents act as a facilitator by helping the adolescent and health care provider connect to one another, and facilitating understanding of the adolescent’s viewpoint. One said about parents’ role that:
[the parents are] supposed to be the patient’s advocate. You know, and if, obviously, there are things that the patient at their age may not, you know, maybe understand to be relevant to the decision-making process, and so I would hope that the parents, you know, knowing they know their kid the best, that they would bring those up . . . (007D)
Parents and adolescents share the role of reporter. In this role, they are responsible for reporting symptoms, concerns, and opinions that may inform the decision-making process. As 1 health care provider stated, “. . . what makes [decision making] very easy is if [the parent and adolescent] are forthcoming with information and sharing their experiences and their questions and their concerns and their thoughts and their ideas” (020D).
Adolescent patient roles
Some health care providers view the reporter role as the adolescents’ most central role. One shared that “. . . the role of the teen is certainly to express what their concerns are” (001D). However, most do not see it as the adolescent’s only role. Adolescents are also learners, a role in which they have 2 separate but related tasks. The first is to learn about their chronic condition and how to care for themselves, and the second is to learn how to be an active participant in decision-making. As 1 health care provider expressed:
[I have] been trying to really work with my adolescent, even early adolescent, patients to start advocating for themselves. Because they have a chronic medical issue, they need to be able to identify their symptoms, know how to advocate for their care and talk to their physicians. (015D)
Triadic Shared Decision-making Components
Although health care providers did not identify any SDM components that were unique to triadic SDM with an adolescent, they did note aspects of the core components of information exchange, values engagement, and preference engagement that may be specific to the triadic setting. Health care providers cited a need to be open to parents’ and adolescents’ questions and the likely need to repeat or rephrase statements during information exchange to ensure adolescents’ understanding. They also remarked about the need to receive input from both the adolescent and parent and that achieving that may require specifically directing questions to each. In reference to input from adolescents, one said “I just start asking [the adolescent] questions directly . . . I just say, I’m going to talk directly to them. What do you think about this? What are your concerns?” (014D)
For values engagement, interactions related to goals that may influence the decision, health care providers again emphasized the need to hear all voices. Once all voices are heard the health care providers’ approaches to values engagement include helping the parent and adolescent find alignment around goals and encouraging the parent and adolescent to continue the discussion outside the clinical encounter.
Similarly, for preference engagement, the process of discussing decision preferences, health care providers again focused on helping the parent and adolescent to find alignment. At the same time, they acknowledged that the weight the adolescent’s preference carries varies by context, such as patient age, and decision, which leads to a push-pull in which they seek to engage the adolescent the “right” amount for a specific decision. This is highlighted by the health care provider who said,
An adolescent who’s in early adolescence is more reliant on their family. And so, . . . a lot more of the discussion I think will happen between the parent and the child versus a late adolescent . . . they will engage in the conversation at a different level than an early adolescent. (020D)
While all health care providers expressed a need for alignment, the approaches used to achieve alignment varied from active facilitation to stating the family needed to discuss more amongst themselves, outside of the clinical encounter. One health care provider stated, “. . . not uncommonly patients leave my office still in discussion mode” (016D).
Essentials for Triadic Shared Decision-making With an Adolescent
Health care providers indicated that engagement of the patient is essential for triadic SDM with an adolescent. They discussed various approaches they used to engage adolescents including focusing on non-verbal communication from adolescents, directly inviting them into the conversation, and talking to them one-to-one. One health care provider summarized this by saying, “I will say, ‘I’m going to ask you these questions, and if you’re not sure of the answer, [parent] can chime in’ . . . But part of it is to sort of help guide them into . . . be part of the visit . . .” (022D). Similarly, the adolescent and parent have to be empowered as participants in the SDM process. As said directly by 1 health care provider, “It doesn’t really matter what I want to do . . .” (009D). Part of empowering the family includes discussing who should be a part of the decision while explicitly acknowledging that it might include people not at the clinical encounter.
In SDM with adolescents, particularly those with chronic conditions, health care providers believe there must be flexibility. They noted that decision roles are not static. There is often a push and pull between the parent and adolescent as they find their roles for each individual decision. Health care providers noted that the adolescent’s role, in particular, may change based on maturity, the specific decision, the adolescent’s prior experience, and family structure. As an example, one stated,
for an older teen, the final decision would be more in their court than for the younger individual. Although if the younger individual actually, you know, really put up a significant stop sign, in my opinion, it wouldn’t be worth moving forward, even if the parent was all gung-ho (005D).
Finally, because of the specific needs of adolescents related to understanding information and finding their role, as well as the particulars of chronic conditions, when the medical condition allows, the timeline for decision-making needs to be flexible. Such flexibility allows the parent and adolescent to have conversations outside of the clinical encounter, permits others outside of the triad to engage in the decision process, and encourages the triad to loop back to the decision process as needed.
Finally, health care providers indicated that for decision-making to move forward, there needs to be alignment, specifically between the parent and adolescent. As noted above, part of the health care provider role may be to help families or parents and adolescents find this alignment in both values and preferences. One provider said,
You know, if we don’t, if the parent and the physician are not on the same page, it’s probably not going to be a very effective decision. I think, you know, all three parties need to buy into what’s going on in order for it really, in order for things to go well. (005D)
Discussion
This article presents key findings about the interactions within the decision triad of parent, health care provider, and adolescent. First, from the health care providers’ viewpoint, there are roles that each member of the triad fulfills. Although there is overlap between the roles, particularly those of parent and health care provider, some aspects are distinct. Prior research has shown that although providers believe they use SDM, observation and family report disagree.15,21-23 Given that health care providers perceive themselves as guides and facilitators of the SDM process, it is imperative that they have a clear understanding of what constitutes SDM and that they receive training in the associated skills.24-27
The facilitation role is especially key when it comes to values and preference engagement. A hallmark of high-quality decision-making is that the decision made is consistent with the patient’s informed preferences.28,29 This is in line with health care providers’ statements that highlighted the need to encourage discussion, understand the patient’s motivations related to the decisions they are making, and find alignment with parents.
Although the facilitator role has not been described in other studies, the health care providers’ educator role is consistent with many models of SDM in which the health care provider is charged with bringing medical expertise to the decision-making interaction. 30 Importantly, this role is also one that prior research has shown that adolescents’15,31 and parents’15,32 identify as key for the physician. Similarly, the parent and adolescent roles of information reporter are consistent with roles identified for the patient in dyadic models of SDM. 30
Prior work 33 has shown that decision-making in pediatric chronic conditions occurs over time and has a pattern which differs between families. That work suggested a need for flexibility in how decision-making occurs. This study adds to that concept of flexibility by considering not only how chronic conditions may impact decision-making but also how adolescents’ developmental trajectory and changing abilities34,35 may also require flexibility in the decision-making process. Although pediatric health care providers likely recognize the developmental needs of adolescents, in a rushed clinic setting, they may not always account those needs in complex decision process. Current decision support tools are largely focused on more static, predictable decision-making encounters. 7 If decision aids are to be used in decision triads that include an adolescent, they will have to account for the need for flexibility in timing, adolescent skills, and the interactions between the adolescent patient and their parent.
Research in pediatric decision-making, in general, and SDM specifically, has mostly focused on parent-health care provider dyads. In fact, recently published consensus recommendations specifically exclude decision-making with adolescents and pose a question about whether the recommendations require change/adaptation for adolescents. 5 The data presented here indicate that SDM in a triad and the associated skills are sufficiently different from dyadic SDM, that adolescent-specific, triadic recommendations are needed. In addition, SDM measures specific to the triad are needed. Not only are existing measures of SDM, with 1 exception,5,6 limited to a decision dyad, but also they do not assess the facilitation roles. Instead, they focus more on health care providers’ roles as guides and educators and the parents’ (or adults patients’) roles as reporter and authority. 36
As qualitative research, these data are not intended to be generalizable. Rather, we sought to provide an in-depth view of health care providers’ perspectives on SDM in a triad. We intentionally recruited a diverse group of health care providers and reached thematic saturation. 13 However, we do not have a sufficient sample size to know how perceptions may vary by clinical setting, training, or demographic factors. Likewise, although health care providers recollected some specific decision-making experiences, most of the discussion was general, and their recollection may have been subject to recall bias. 37 Finally, although we told participants we were interested in decisions that involved adolescents and their parents, we did not specifically define adolescent during the interviews.
These data from a diverse group of pediatric health care providers indicate they have a strong desire to engage adolescents with chronic conditions and their parents in shared treatment decisions. However, they also acknowledge the existence of challenges, such as consistently aligning parent and adolescent goals. Health care providers in this study had varied approaches to such challenges, indicating a need to understand which approaches, if any, are most effective. Similarly, work is needed to ascertain how best to measure SDM in a triad. Given the importance of all 3 members of the triad, it will be essential that intervention work includes the perspectives of health care providers, parents, and adolescents to ensure feasible, effective approaches that are acceptable to all.
Author Contributions
All authors made substantial contributions to the conception or design of the owrk; or the acquisition, analysis or interpretation of data for the work; and participated in drafting the work or revising it for intellection content; and all authors aprove the final version to be published.
Supplemental Material
sj-docx-1-cpj-10.1177_00099228241299897 – Supplemental material for Health Care Provider Perspectives on Shared Decision Making With Parents and Adolescents
Supplemental material, sj-docx-1-cpj-10.1177_00099228241299897 for Health Care Provider Perspectives on Shared Decision Making With Parents and Adolescents by Ellen A. Lipstein, Isabella K. Pallotto, Chelsey B. Anderson, Mary Anne Ammon and Adam C. Carle in Clinical Pediatrics
Footnotes
Artificial Intelligence Generated Content
Generative artificial intelligence (AI) and AI-assisted technologies were not used in the preparation of this manuscript.
Data Availability
De-identified data are available upon request.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr EAL affirms that everyone who has made significant contributions to this work is included.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Agency for Healthcare Research and Quality (#1R01 HS028976-01 to Drs ACC and EAL) and the National Research Service Award in Primary Medical Care through the Health Resources and Services Administration (T32HP10027 to Dr JMA).
Ethical Approval
Ethical approval for this study was granted by the Cincinnati Children’s Hospital Institutional Review Board (#2022-0329).
Consent for Publication
The Ethics Committee of the Cincinnati Children’s Hospital Institutional Review Board waived the need patient consent for the collection, analysis, and publication of the anonymized data for this non-interventional study.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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