Background Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. Methods The study was based on the UK Medical Research Council’s (MRC) framework on developing and testing complex interventions. To increase the program’s feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. Results Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition – a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. Conclusions The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents’ and adolescents’ needs were represented and addressed in the program. Trial registration ClinicalTrials.gov ID NCT04969328.
Background Confidential youth consultations aiming at enhancing adolescent autonomy are a cornerstone of transitional care. At the same time, parental support is essential. These conflicting considerations result in a clinical dilemma. Objective The aim of this study was to examine the attitudes of parents to chronically ill adolescents regarding confidential youth consultations and to explore the underlying reasons. Methods A sequential explanatory mixed methods design consisting of a cross-sectional questionnaire survey (n = 117) and three focus group interviews among parents (n = 12) to chronically ill adolescents (12–19 years) was used. Quantitative data were analyzed descriptively. Qualitative data were analyzed using King’s template method. Results The parents preferred independent youth consultations starting around the age of 14–15 years. Around 60% of the parents had one or more concerns regarding independent youth consultations. Although 64% of the parents supported conditional or full confidentiality during adolescence, 95% wanted information even though their child did not consent. In the qualitative analysis, the parents described caring for a child with chronic disease as a term of life perceiving themselves as an “octopus” with numerous roles related to daily care and treatment and at the same time with thoughts and worries regarding the future. We found four themes: ‘a life with chronic disease’, ‘responsibility’, ‘protection’ and ‘apprenticeship’. The parents’ attitudes were influenced by their roles and their perception of the adolescent’s competences as well as their experience with the healthcare system. Conclusions Our findings suggest that parents need transitional care too.
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