Matching and accepting assistive technology in MS: the perspective of patients, carers and OTs

Abstract

Background: People with Multiple Sclerosis (PwMS) acquire assistive technologies (AT) to maintain their health and improve independence and quality of life. However, little is known about the experience and impact of AT nor of the biopsychosocial factors that influence its use. Drawing from the self-regulation of illness theory, this qualitative study explored the experiences and perceptions of PwMS, carers and occupational therapists towards AT. Methods: Four focus groups (two PwMS (N=14), one carer (N=5) and one OT (N=4)) were conducted using a semi-structured framework. Focus groups were audio-recorded, data transcribed verbatim and analysed thematically (Braun & Clarke, 2006; 2013). Data from each sample was analysed separately before common and disparate themes were identified. Findings: Themes included: Critical MS Events (developing symptoms/disability; delayed diagnosis and coping; establishing public reaction; MS progression to AT); Matching AT for Continued Use (acceptance of MS and AT; realistic expectations; OT responsiveness; timing is crucial; device factors; carers and others); Impact of AT (promoting or losing independence; stigma and embarrassment; reducing carer role). Discussion: Critical MS events were identified as leading to recognition of a need for AT. In all groups, acceptance of MS and AT emerged as key enablers of successful AT matching as well as other personal, service, device and external influences. Positive and negative outcomes were identified for PwMS and carers. Our findings suggest that good communication between therapists, carers and PwMS is required to improve AT services by ensuring devices match user needs and thus maximise health gains.