“Until there is a cure, there is care”: a person-centered approach to supporting the wellbeing of people with Motor Neurone Disease and their family carers
Aoun, SM and Hogden, A and Kho, LK, 'Until there is a cure, there is care': a person-centered approach to supporting the wellbeing of people with Motor Neurone Disease and their family carers, European Journal for Person Centered Healthcare, 6, (2) pp. 320-328. ISSN 2052-5656 (2018) [Refereed Article]
Copyright 2017 European Journal for Person Centered Healthcare
Background: There is a lack of interventional studies to support the psychosocial wellbeing of people with MND
(PwMND) and their family carers. Moreover, their experiences with the models of care already provided by ALS/MND
voluntary organisations have not been well investigated.
Objectives: To report on a person-centered model of care, the MND Advisory Service, designed to support the needs of
PwMND and their family carers, to explore their experiences with the service they received and to identify which aspects of
this service were most needed and valued by the service users.
Methods: Participants were recruited from the MND Association in Western Australia. PwMND and carers were invited to
separately complete anonymous postal surveys (2015-17), using a mixed method design comprising quantitative and openended questions.
Results: The average response rate across the 3 years was 38% (138 patients and 117 carers); 84-89% of both groups felt
more supported and cared for as a result of the service and 79-82% felt they were able to make more informed decisions to
manage their health and wellbeing. Ninety percent of both groups found the MND Advisory Service of high value
practically and emotionally, especially the personal contact and time dedicated to the visit, with 86-88% stating that the
service had met their expectations.
Conclusions: Two unique features of this service, not provided by other services to the same extent, are the emotional
benefit to both groups and the particular focus on the family carers’ needs. Until such person-centered models of care are
properly investigated through the experiences of their users, erratic changes in care funding will pose a threat to their
effective operation and even viability. The drive to find a cure should not detract from the fact that PwMND and their
families still need to be supported physically and psychologically until then.
motor neurone disease, person-centred care, caregivers