This study was conducted to compare the perspectives of parents and pediatric clinicians regarding SDM, a central component of guideline-based ADHD care and an approach applicable to many childhood conditions.10
We found that, although parents and clinicians shared favorable views of the process, they understood SDM differently and implemented the process incompletely. Instead of acquainting families with all options first, pediatric clinicians in our study often presented information to persuade families to accept their preferred treatment. In contrast, and consistent with findings in other pediatric settings, we found that families desired comprehensive, unbiased information before decision-making, even if they ultimately delegated responsibility for the decision to the clinician.20
Because previous work demonstrated that families have considerable distrust of those treating ADHD,15,21
as well as a hesitancy to ask about risks and benefits of treatments for various acute conditions,22,23
and our findings suggest that a biased presentation of options compromises trust, approaches are needed to help clinicians communicate information regarding alternatives more effectively. Pediatric clinicians may benefit from training in SDM, which has proven effective in improving outcomes for children with behavior problems.24
In addition, our results suggest that families and clinicians may benefit from the use of decisions aids, standardized and validated tools20,25,26
to help families learn about the risks and benefits of treatment and to consider decisions in the context of their personal values.5
Because use of these tools is limited in pediatrics,20
the development and evaluation of approaches for implementing decision aids in pediatrics, as has been performed in the adult setting, is warranted.27,28
Our results also highlight the extent to which practical considerations constrain SDM for ADHD. Although barriers to care are known to affect treatment for behavioral conditions, especially among poor patients,29,30
our results indicate that issues of cost, insurance coverage, and time limitations often prevent both poor and middle class families from considering scientifically proven options. In addition to affecting receipt of treatment,31–33
we found that these barriers influence how clinicians present options to families. Our findings suggest the importance of efforts to help clinicians and parents weigh practical considerations in SDM, which are not traditionally the primary focus of decision aids.25
This is especially important for chronic conditions such as ADHD, for which decisions are revisited over time as families acquire real-world experience with treatment.34
In this context, SDM is likely to benefit from efforts to promote care coordination that help families mitigate barriers to receiving their preferred treatment,35
as well as policy work to improve access to mental health services.36
Although much of the literature on SDM has focused on doctor-patient communication, SDM in ADHD extends beyond this dyad. Building on previous work that characterized the influence of social networks on families with ADHD37
and the difficulties of clinicians in communicating with other professionals to coordinate care,31
our findings underscore the often-central role of extended-family members, friends, and professionals from the school and mental health system in SDM. However, they rarely are active participants in the medical encounter. Further research is needed to understand how to engage actively in the decision-making process participants from multiple settings and how to address sometimes-unfounded but strongly held concerns about treatment options. With appropriate privacy protection, asynchronous communication through e-mail or Internet-based portals, approaches that have proven acceptable for families and time-saving for clinicians,38–40
might be an important strategy to achieve this goal.
Given known disparities in care,17,32,41
we purposively sampled even numbers of black and white participants, to understand how perspectives on SDM varied among groups. We found that views of SDM were similar for black and white parents. However, consistent with previous studies that identified greater ADHD information needs among black families,17
our results indicated that black participants might not have benefited from contacts with health professionals within their social networks to the extent that white participants did. One strategy to address this gap is to recruit black students into the health professions, an approach that also may address broader health disparities.42
In addition, these findings suggest that, although similar approaches to SDM may be effective across groups, the presentation of information may need to be tailored. Black parents, especially those whose friends and family members express concerns regarding treatment more strongly, may benefit from additional support from clinicians or referral to community groups.
This study had several limitations. We elicited parents' and clinicians' perceptions of SDM but did not confirm that perceptions matched actual patterns of decision-making and receipt of health services. Participants were primarily from 1 health system, and results might not be generalizable to all settings. Because most participants were recruited through a pediatric primary care network, views of families not using primary care might not have been captured. However, our goal was to explore perspectives on SDM in primary care, which made this setting appropriate for our study. In addition, the perspectives of clinicians and parents who participated might differ from the perspectives of those who did not volunteer. Our study was designed to explore how parents and clinicians understand SDM in ADHD. Although themes seem relevant to multiple chronic pediatric conditions, additional study will be needed to establish whether perspectives differ across conditions.