Experiences of health services and unmet care needs of people with late-stage Parkinson's in England: A qualitative study

Autor: Charlotte Löfqvist, Gergely Bartl, Sarah Cable, J Read, Susanne Iwarsson, Anette Schrag
Rok vydání: 2019
Předmět:
Male
Palliative care
Health Care Providers
Care provision
Geographical locations
0302 clinical medicine
Surveys and Questionnaires
Health care
Medicine and Health Sciences
030212 general & internal medicine
Disease management (health)
Aged
80 and over
Allied Health Care Professionals
Multidisciplinary
Movement Disorders
Family caregivers
Palliative Care
Parkinson Disease
Neurodegenerative Diseases
Health Services
Qualitative Studies
Hospitals
3. Good health
Europe
Caregivers
England
Neurology
Research Design
Medicine
Female
Thematic analysis
Psychology
Research Article
Science
Health Personnel
Research and Analysis Methods
03 medical and health sciences
Nursing
Mental Health and Psychiatry
Humans
Patient Reported Outcome Measures
European Union
Aged
Service (business)
business.industry
United Kingdom
Nursing Homes
Health Care
Health Care Facilities
Dementia
People and places
business
Delivery of Health Care
030217 neurology & neurosurgery
Qualitative research
Zdroj: PLoS ONE
PLoS ONE, Vol 14, Iss 12, p e0226916 (2019)
ISSN: 1932-6203
Popis: AimTo explore experiences of health services and unmet care needs by people with late-stage Parkinson's in England.MethodTen participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis.FindingsParticipants reported that whilst under the treatment of specialist hospitals, the majority of care provision had shifted into the community, often because hospital-based services were felt to be difficult to access and have limited benefit to them. When using health-care services, participants frequently experienced having to 'fit-in' to service structures that did not always accommodate their complex needs. Despite high levels of disability, participants expressed their desire to maintain their identity, normality of interests and activities in their lives, including remaining in their own homes. This was facilitated by bespoke care and equipment, and positive relationships with care providers. Knowledge on disease management was a key factor in their perceived ability to remain in control. Family caregivers had a central role in facilitating care at home. There was uncertainty about and little planning for the future, and moving to a residential nursing home was perceived an undesirable but potentially necessary option for future care.ConclusionUnmet care needs identified by people with late stage Parkinson's in England include greater flexibility of healthcare structures and bespoke service provision, to accommodate their individual complex needs. Support in their own homes and positive relationships with healthcare providers help People with Parkinson's (PwP) to maintain a degree of normality and identity, and provision of information help them maintain some control. There is a need for more informed discussions on future care planning for this specific population.
Databáze: OpenAIRE
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