ABSTRACT
PURPOSE: Inadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition. METHODS: We conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved. RESULTS: 18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs' changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning. CONCLUSIONS: This study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents' desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents' challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs' skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents.
ABSTRACT
Adolescents and young adults (AYAs) benefit from healthcare transition (HCT) programs. Despite the well-established literature reviewing HCT, a considerable heterogeneity exists on the involved healthcare professionals. This review aims to explore systematic reviews on the practices and recommendations on which disciplines of professionals should be involved in HCT. An umbrella review was performed using the MEDLINE, EMBASE, and Web of Science databases. To be eligible, systematic reviews had to report on the composition and/or the rationale of members of a transition team. Seventeen reviews were included in this systematic review. A healthcare professional that coordinates HCT was identified as a key caregiver in all reviews. Other reported members of a HCT team were nurses (75% of the reviews), social workers (44%), and peers/mentors (35%). The reported key responsibilities of a HCT team were to (i) manage communication, (ii) ensure continuity of care, and (iii) maintain contact with community services. Conclusions: A team responsible for HCT should be active on the organizational, medical, and social levels. Key members of a HCT team vary little between diseases and included a coordinator, social worker, and nurse. A coordinating physician could facilitate transition in complex conditions. At all times, the condition and needs of the AYA should determine who should be involved as caregiver. What is Known: ⢠The psychosocial needs of adolescents and young adults during healthcare transition are largely similar between chronic diseases. What is New: ⢠Coordinators, nurses and social workers were the most involved, independent of the condition. ⢠A liaison team should be active on organizational-, medical- and social-levels.
