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Managing medical crises: the experiences of people affected by Motor Neurone Disease and their carers
- Authors:
- HILL Jacqueline, WILSON Eleanor
- Journal article citation:
- Journal of Care Services Management, 5(4), October 2011, pp.190-199.
- Publisher:
- Taylor and Francis
People living with motor neurone disease (MND) can suffer from a range of acute medical emergencies throughout the course of their illness. The majority of people are cared for at home and during an acute incident need to access crisis intervention services. However, there is limited knowledge on the experiences of patients and carers of using these services. This qualitative study explored the experiences of people with MND and their family carers who had accessed a crisis intervention service during a medical emergency. Semi-structured interviews were conducted with 7 people with MND; 5 family carers, and 2 bereaved family carers. Findings revealed that the majority of participants were satisfied with the service they received. Issues relating to negative experiences included a lack of clear information about when services were available, a lack of understanding of how the ambulance service works, and poor communication within and between services. Implications for improvements in services to this group of users are discussed.