Assessing multiple sclerosis patients' and carers' views of respite care

Background: People with multiple sclerosis (MS) often require full-time care, which may be provided by informal carers. Respite becomes a vital part of carers' lives allowing temporary relief. Little attention in the literature is given to the people who experience respite care. Aim: The aim of this study was to assess the views of respite care by MS patients and their carers. Method: A cross sectional survey was conducted in Northern Ireland, one questionnaire for patients and another for carers. The lists of two long stay respite units provided the sample for the study, from these 96 patients and 96 carers were approached. A total of 70 patients (73%) and 28 carers (29%) responded. Results: Seventy-one percent of patients used respite care to give their carers a break; 64% of carers used respite to relieve stress. More than half, 64% of patients, enjoyed respite; 6% were angry about requiring respite; 57% of carers felt guilty about using respite. Overall, 81% of patients were satisfied with respite. Almost all carers (96%) stated that respite allowed them to continue caring. Conclusions: Both patients and carers felt respite was a positive and necessary form of care. The study did highlight that activities or outings for patients in respite would be welcomed.