Progress
in Palliative Care, 2015, vol./is. 23/6(331-342)
Veronese,
S., Gallo, G., Valle, A., Cugno, C., Chiò, A., Calvo, A., Rivoiro, C., Oliver,
D. J.
The particular needs of people with advanced and progressive
neurological disease are not well known. A qualitative approach was used,
interviewing people with advanced amyotrophic lateral sclerosis/motor neurone
disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and
multiple systems atrophy (MSA) and their family carers to ascertain their
particular needs. Focus groups of health and social care professionals allowed
a professional view of the needs. People with progressive disease have many,
difficult and distressing symptoms: physical, including pain, movement issues,
swallowing and speech problems, psychological, feelings of being abandoned and
of anxiety and depression, social, of isolation, of being a burden and of
financial issues, and spiritual, of loss of hope and the meaning of life as
they approach death.
Available in print in Arthur Rank Hospice Library, Brookfields Hospital