BackgroundCarers of Persons with Parkinson's disease (PwP) have significant palliative care needs that are not adequately addressed in current models of care. To provide holistic and targeted support to carers it is important to understand their perceptions of the multiple dimensions of caregiving (defined as domains) and associated core components within each domain (defined as key concepts).PurposeTo (a) elicit carers' perceptions and experiences of caregiving domains and associated key concepts within each domain, and (b) develop a framework of Parkinsons Disease (PD) caregiving incorporating the domains and their associated key concepts.MethodsWe conducted a qualitative descriptive study using perspective mapping, a novel hybrid mind-mapping method to develop a framework on the domains of PD caregiving. Semi-structured virtual interviews were conducted with former carers of PwP to elicit their experiences and perceptions of caregiving. Interviews were audio-recorded, de-identified, and transcribed. A codebook was developed and data were coded and analyzed to develop the framework of PD caregiving domains.ResultsFifteen carers participated in the study. A framework of PD caregiving was developed that comprised nine domains and 52 key concepts. The domains included decision-making, caregiving preparedness, care coordination, disease management, preserving self, emotional, spiritual, social/cultural, and physical.ConclusionsA carer-elicited framework of PD caregiving is important to provide holistic support to PD carers. Both carers and clinicians may benefit from this framework that may help with identifying caregiving domains that require targeted support. Future research is needed to further refine the framework and build carer-centered intervention development.
- Domains of Caregiving in Parkinson's Disease: A Framework Developed Through Perspective Mapping
- Sandhya Seshadri - University of RochesterKristin Corey Magan - University of Massachusetts DartmouthAngela Contento - Warner UniversityJennifer R Mammen - University of Massachusetts DartmouthBenzi M Kluger - University of Rochester
- American journal of hospice & palliative medicine, p.10499091261446261
- SAGE PUBLICATIONS INC; THOUSAND OAKS
- 10
- National Institute on Aging: 1K01AG084878-01A1
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: First author, S. Seshadri received funding from National Institute on Aging, National Institutes of Health (1K01AG084878-01A1), and senior author, B.M. Kluger received funding from the National Institute on Aging K02AG062). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. All other authors report no relevant disclosures and declare there are no conflicts of interest relevant to this work.
- Department of Adult Nursing
- English
- Journal article
- https://doi.org/10.1177/10499091261446261
- 9914531314001301