User, carer and professional experiences of care in motor neurone disease

Abstract

Motor neurone disease (MND) is a devastating neurological terminal condition with no cure. Care is the only option, which sharpens the need for its examination and clarification. This paper reports on a hermeneutic study which addressed the question, ‘What are the lay and professional values of care in the context of motor neurone disease and is there a difference between them which affects care delivery and receipt?’ The study discovered three ways of caring, with most alignment between the two lay groups. The professional carer stance is predominantly functional and illustrates detachment from the experience of living with illness whereas the recipients' needs are holistic. These two value structures, the mechanistic and the hermeneutic, are in tension. To redress this imbalance, support for a dispositional shift in professional values to be more client focused is advocated.