Self-Management in Healthcare Transition for Adolescents with Renal Transplants and Their Caregivers

Abstract

Purpose: The purpose of this qualitative descriptive study was to explore facilitators and barriers, tension and influence in transition from dependent to independent self- management for adolescents with kidney transplants and their caregivers. Background: Adolescents with kidney transplants must adhere to ongoing and complex self-management regimens as they transition from dependence on their caregiver to assuming greater independence. This developmental and health illness shift occurs simultaneously within the context of the adolescent-caregiver dyad as the adolescent strives for autonomy and the caregiver relinquishes control. This shift also coincides with the time frame prior to the highest incidence of kidney graft failure in early adulthood, and correlated with poor self-management. There has been no known research exploring the perspectives of both adolescents with kidney transplants and caregivers during this critical time frame focused specifically on facilitators, inhibitors, role tension and caregiver influence. Theory: Meleis’ transition theory provides a foundation for this research. Alignment of the study findings specific to adolescents with kidney transplants and their caregivers is proposed. Methods: Qualitative descriptive methodology was employed with data collection consisting of semi-structure interviews. A total of 18 dyads, nine adolescent kidney transplant recipients, and their respective caregivers were enrolled and completed the study. Data analysis occurred through qualitative content analysis. Results: The overarching theme emerging from the narratives was liminality, the sense of being in transition. Three additional themes emerged from this main theme: 1) Pre-Transplant Experience:” 2) “Post-Transplant Experience;” and 3) “Impact of a Pandemic.” Adolescent and caregivers viewed the experience from a temporal order of diagnosis, management of renal failure, receiving the transplant, and post-transplant care. The unique complexity of the diagnosis of end stage renal disease and kidney transplantation, and the situational context of the COVID pandemic was expressed. Participants perceived facilitators and inhibitors at the individual and interpersonal level, and recognized the dyadic influence and role shifts in moving from dependent to independent self-management. They also expressed the influence of the health care team in facilitation of successful transition to independent self-management. Discussion: Successful transition to adolescent self-management exists within the context of the shared relationship between the adolescent and caregiver, is impacted by factors including age of diagnosis and level of dependent care pre-transplant, and is greatly influenced by the consequences of poor adherence post-transplant. Inhibitors to successful self-management may be mitigated by a focused assessment of the unique perspectives of both adolescents and caregivers, while recognizing the significant role of the health care team provides opportunities for targeted therapeutic interventions in support of the dyad.