ArticleOrphanet journal of rare diseases2026
Tailoring acceptance and commitment therapy for parents of children with undiagnosed conditions: a qualitative pre-implementation study.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundParents of undiagnosed children (POUC) experience significant psychosocial challenges, including anxiety, uncertainty, and isolation, that stem from parenting medically complex children while facing obstacles throughout the diagnostic journey. Despite these well-described challenges, a mental health intervention designed to meet the unique needs of POUC, which is necessary to promote the psychological and overall wellbeing of this population, does not exist. Acceptance and Commitment Therapy (ACT) has proven effective in a wide range of populations and shows promise for POUC. With the goal of designing and implementing an ACT-based intervention tailored to POUC, this pre-implementation study aimed to understand their psychosocial needs and prior mental health support experiences, explore their reactions towards ACT, and determine their anticipated barriers, facilitators, and preferences for participating in an ACT skills group, guided by the Consolidated Framework for Implementation Research (CFIR).
methodsSemi-structured, individual interviews were conducted with 18 POUC, including an experiential portion that exposed participants to key ACT concepts and exercises. Inductive coding based on participant responses and deductive coding based on the CFIR were employed to code interview transcripts. Reflexive thematic analysis was performed to identify key findings.
resultsIsolation was a psychosocial challenge for which all participants desired support. Many participants reported inadequacies in their prior mental health support, primarily due to lack of understanding from therapy providers regarding their unique circumstances. Although most participants indicated that ACT could help them manage difficult thoughts and emotions and act in alignment with their values, they also described achievability, collaboration, and accountability as key elements that could support their uptake. The main barriers, facilitators, and preferences that participants highlighted were related to group design (accessibility, flexibility) as well as their own characteristics as recipients (capability, need, and motivation).
conclusionsThis pre-implementation study affirmed the potential value of ACT for POUC and identified key opportunities for tailoring an ACT skills group to meet their needs. Future research, including pilot implementation studies, are needed to evaluate the effectiveness of a tailored ACT skills group and further refine both the intervention and its implementation strategy.
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