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The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies
- Source :
- Journal of Parkinson's Disease. 11:1597-1617
- Publication Year :
- 2021
- Publisher :
- IOS Press, 2021.
-
Abstract
- Background High treatment burden is associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Identifying factors that impact treatment burden in Parkinson’s disease can offer insights into strategies to mitigate them. Objective To explore the experiences of treatment burden among people with Parkinson’s disease (PwP) and their caregivers. Methods A systematic review of studies published from year 2006 was conducted. Qualitative and mixed-method studies with a qualitative component that relate to usual care in Parkinson’s disease were included. Quantitative studies and grey literature were excluded. Data synthesis was conducted using framework synthesis. Results 1757 articles were screened, and 39 articles included. Understanding treatment burden in PwP and caregivers was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson’s disease are: 1) work and challenges of taking medication; 2) healthcare provider obstacles including lack of patient-centered care, poor patient-provider relationships, lack of care coordination, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about health and challenges with information provision. The treatment burden led to physical and mental exhaustion of self-care and limitations on the role and social activities of PwP and caregivers. Conclusion: There are potential strategies to improve the treatment burden in Parkinson’s disease at an individual level such as patient-centered approach to care, and at system level by improving access and care coordination between services. Future research is needed to determine the modifiable factors of treatment burden in Parkinson’s disease.
- Subjects :
- Gerontology
Parkinson's disease
business.industry
Health Personnel
Data synthesis
Treatment burden
Parkinson Disease
Disease
Grey literature
medicine.disease
Taking medication
03 medical and health sciences
Cellular and Molecular Neuroscience
0302 clinical medicine
Caregivers
Quality of Life
medicine
Humans
Organizational structure
030212 general & internal medicine
Neurology (clinical)
business
Qualitative Research
030217 neurology & neurosurgery
Qualitative research
Subjects
Details
- ISSN :
- 1877718X and 18777171
- Volume :
- 11
- Database :
- OpenAIRE
- Journal :
- Journal of Parkinson's Disease
- Accession number :
- edsair.doi.dedup.....72e0b1a441dc4cfc1a8b0ca3b2c46866
- Full Text :
- https://doi.org/10.3233/jpd-212612