Article

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. METHOD: 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
- Royaume Uni
people with neurological conditions.

Langue : ANGLAIS