Care-giving experiences of parents of young people with PMLD and complex healthcare needs in the transition to adulthood years: a qualitative poetic synthesis

Abstract

Objective: To synthesise qualitative research exploring the care-giving experiences of parents of young people with profound and multiple learning disabilities (PMLD) and complex healthcare needs, in the transition to adulthood years. Method: Four databases were systematically searched: Scopus, WoS Core Collection, Medline and SciELO. Included papers were assessed for quality and thematically synthesised. Findings are presented in the form of free-verse poems. Results: Nineteen papers from eight countries were included. Analysis generated three themes: interdependency of parent and child, where parents retained responsibility for their child’s care; apprehension regarding sharing and shifting responsibility between parents and professionals; an uncertain future in terms of care provision. Conclusions: Parents are concerned about the future care of their children. Training professionals in alternative and effective communication is fundamental to successful transition. Encouraging discussions about advanced care planning may also alleviate parental concerns and ensure good outcomes for young people with PMLD.