RESUMEN
Objective: The purpose of this article is to characterize the current evidence base related to peer support interventions for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) and to describe a peer support program to enhance self-management for AYAs with IBD through a case study. There is strong theory and compelling evidence suggesting that AYAs with IBD could benefit from and are interested in receiving peer support to enhance self-management; however, literature on peer support interventions for AYAs with IBD is lacking. Methods: This study (a) presents a topical review describing qualitative factors AYAs with IBD would seek in a peer support program as well as existing peer support programs for this population, (b) presents an innovative one-to-one peer support program targeting self-management through a case study, and (c) discusses clinical implications and directions for future research. Results: Peer support offers a promising approach for AYAs with IBD that is feasible and acceptable to patient populations. However, results from the present topical review identified only two studies that examined peer support interventions for AYAs with IBD. The case study demonstrates how a theoretically driven program uses peer support to promote self-management and adaptive behavioral change. Conclusions: The paucity of literature in this area reveals a critical opportunity for future research and clinical programming to improve existing practices by leveraging peer support. We present the application of an innovative mobile-based peer coaching intervention that has the potential to support AYAs with IBD in their self-management.
Asunto(s)
Neoplasias , Estrés Psicológico , Niño , Familia , Humanos , Relaciones Padres-Hijo , PadresRESUMEN
PURPOSE: This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33â¯years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. DESIGN AND METHODS: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. RESULTS: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. CONCLUSIONS: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for non-categorical HCT-focused approach. PRACTICE IMPLICATIONS: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.