"Us learning to live without him 24/7”:_Exploring the experiences of parents of young people with profound and multiple learning disabilities at transition to adult services: A multi-perspectival and multi-modal phenomenological study

Abstract

Young people with profound and multiple learning disabilities have increased life-expectancy, owing to improvements in healthcare, now often arriving at adulthood. They face multiple transitions from paediatric to adult health and social care services due to the complexity of their needs, whilst remaining reliant on their parents for care. Parents act as advocates and transition co-ordinators, facing new challenges as support moves from a family-centred model to symptom-led, medical model. The work of this thesis aims to explore parents’ experiences of their child’s transition and the unaddressed issue of their own support needs at this time. This was achieved through a multi-perspectival and multi-modal phenomenological approach, employing relational mapping and research poetry. A committed research advisory group engaged with the project throughout. A poetic synthesis of qualitative evidence illuminated parents’ caring experiences during the transition years, exposing parental-child interdependence, difficulties sharing responsibilities with service providers and fear of the future. Template analysis adopting a phenomenological interpretative approach considered professionals’ views of both transition and the parents’ role. Differences in attitudes between professionals working closely with families and commissioners reflected differences in how parents are perceived. A secondary study from the template analysis considered professionals’ experiences of working with families during Covid-19. In a study employing longitudinal Interpretative Phenomenological Analysis, parents of young people with PMLD shared their transition experiences, supported by relational mapping. The complexity of support for young people was contrasted with a lack of support for parents. A change in parents’ legal status induced uncertainty for the future. The parents’ role as superseded marginalised carers was established through the application of Bronfenbrenner’s Ecological Model (1979) and secondary analysis employing Twigg and Atkin’s Typology of Caring (1994). Recommendations are provided for supporting parents through top-down systemic education and bottom-up interventions.