Service delivery for people with hereditary spastic paraparesis living in the South West of England.
OBJECTIVE
Hereditary Spastic Paraplegia (HSP) is an inherited nervous system disorder characterized by development of leg weakness, spasms and stiffness. While generally acknowledged that health and social care services can minimise symptoms and improve quality of life, there is a lack of research exploring this from the perspective of people affected by HSP. This qualitative study explored the users and providers experience of using rural services.


METHODS
Focus groups and interviews were undertaken of people with HSP (n = 14), carers (n = 6) and professionals (n = 12), to describe their experience of service provision and to suggest improvements for care. These were taped, transcribed and analysed.


RESULTS
Four themes emerged: (1) Diagnosis, symptoms and finding support; (2) Therapy, treatment and the delivery of care; (3) Managing the disease together; and (4) The way forward.


CONCLUSIONS
Rehabilitation and support for self-management is valued by those affected with HSP throughout the disease trajectory from diagnosis onwards. Key to this is the development of a partnership approach which includes carers. Single point, well-informed, gatekeepers may enhance the coordination and delivery of care in rural areas. These findings underline current guidance promoting a holistic approach for people with neurological conditions.
Faculty of Health, Education and Society, Peninsula Allied Health Centre, Plymouth University , Plymouth, Devon , UK.
Jane
J
Grose
Jennifer
J
Freeman
Jonathon
J
Marsden
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology; D003695:Delivery of Health Care / Q000379:methods / Q000458:organization & administration; D004739:England / Q000453:epidemiology; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D058996:Quality Improvement; D011788:Quality of Life; D019035:Rural Health Services / Q000592:standards*; D012424:Rural Population; D012947:Social Work / Q000379:methods / Q000458:organization & administration; D015419:Spastic Paraplegia, Hereditary / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation
Carers; health services; hereditary spastic paraparesis; neurological conditions; rural