Exploring caregiver perspectives of adults with Severe and Profound and multiple Learning Disabilities Accessing Sedentary Hydrotherapy (SPLASH Study).

Abstract

Background: The term Learning Disability (LD) defines a significant impairment in cognition and social functioning, present from birth/early-childhood with a lifelong enduring impact. Severe LD (SLD) and Profound and Multiple LD (PMLD) diagnoses are made when intelligence quotient falls below 35 and 20 respectively. Physical disability in LD is largely neurological as brain development is interrupted/affected. While the effectiveness of hydrotherapy (use of water for therapy/rehabilitation) is proven in many neurological conditions (e.g. Cerebral Palsy, Alzheimer’s/Parkinson’s disease), evidence regarding adults with SLD/PMLD is lacking. Previous research in other neurological populations (e.g. Cerebral Palsy/stroke), has centred on the biomedical-model of disability, highlighting a need for exploratory and biopsychosocial research (combining biomedical with psychosocial factors: e.g. wellbeing, support/care needs). Aim: Exploring caregiver perspectives of adults with Severe and Profound and Multiple Learning Disabilities accessing sedentary hydrotherapy. Design/methodology: In this qualitative study, caregivers of adults with SLD/PMLD were recruited through public advertising and participated in virtual semi-structured interviews and an online-questionnaire. The biopsychosocial International Classification of Functioning, Disability and Health framework underpinned the study methodology, informing the main interview topics and questionnaire. Topics included: health, function, welfare, connections and support. Thematic analysis was used to analyse interview data, while the questionnaire provided demographic and contextual data. Findings: Twenty-three caregivers participated in the study: five family, nine health-professional, eight paid, one volunteer. Alongside barriers/facilitators and the impact of Covid-19, six unique themes of importance were identified: body systems, choice, motivation and inspiration, emotions, quality interaction, family bonding and social inclusion. Conclusions: Through exploring caregiver perceptions of hydrotherapy and adults with SLD/PMLD, SPLASH Study has gained unique biopsychosocial insights into the experiences of a population underrepresented in research literature. Caregivers reported wide ranging impacts including physical improvement, and psychological as well as social benefits: these should be considered in future research and practice development.