There has been little systematic improvement related to health care transition (HCT) services for adolescents and emerging adults (AEAs) with intellectual disability (ID) (Bindels-de Heus, van Staa, van Vliet, Ewals, & Hilberink, 2013; American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011; Federal Partners in Transition Workgroup, 2015). This is particularly concerning given AEAs with ID, often with co-occurring medical and psychiatric conditions, experience health disparities (Krahn & Fox, 2014), and face additional life-long challenges with learning, decision-making, language, mobility, self-care, and living independently. Despite the increasing recognition of the critical nature of HCT processes for youth with special health care needs and their parents (White et al., 2018; Betz, Nehring, & Lobo, 2015) AEAs with intellectual disability (ID) remain among the least likely to receive health care transition services (Acharya et al., 2017; Cheak-Zamora, Yang, Farmer, & Clark, 2013). For AEA’s with ID, parents are key partners in helping them achieve and maintain health, safety, and well-being. Greater contextual understanding of the HCT experiences of AEAs with ID and their parents is needed to guide improvements in HCT services for this population. Therefore, the purpose of this study was to explore the HCT experiences according to parents of AEA children 18-33 years of age with ID.
Methods:
A qualitative descriptive design was used with semi-structured individual interviews with 16 parent participants. Maximum variation sampling was utilized with variation in transition stage, condition, and parent race/ethnicity. This study was conducted at a major medical center in the southeast United States. Qualitative content analysis was conducted.
Results:
The findings related to HCT experiences were organized into the overarching theme “an inefficient and siloed medical system”. When asked about their child’s preparation for medical transition from pediatric to adult-based care, parents commonly described frustration, uncertainty, and/or shock. There were three patterns to the medical transition for the AEAs: (1) incomplete transition (continued care by at least one pediatric-based advanced practice provider) after reaching adulthood (n=6); (2) transition of care to an adult provider because of retiring pediatrician (n=3); (3) abrupt age-related transition (n=4); (4) parent-initiated transition planning (n=2). Parents attributed pediatric providers reluctance to promote transition to an adult-based advanced practice provider to: a) inadequate system support, b) pediatric-based advanced practice providers (e.g. MD, NP, PA) concern about adult-based provider’s ability to provide the necessary care, and c) attachment pediatric providers have to the individual child. Facilitators to HCT preparation included: parent’s knowledge of transition related needs, parents advocating for HCT with health care providers, parents initiating this process with health care providers, and pediatric advanced practice providers being knowledgeable of adult-based providers that can and will accept transfer of care.
Conclusion:
Study findings demonstrated similar HCT difficulties experienced across families. AEAs with ID, their parents, and health care teams need to partner in HCT planning and implementation in order to meet the goals of HCT. Intervention studies are needed to promote improved HCT-related clinical outcomes for the AEA population with ID. Additionally, further tailoring of HCT tools for AEAs with ID and their parents is needed to guide advanced practice providers in the implementation of HCT elements in the clinical setting.