Domains of Caregiving in Parkinson’s Disease: A Framework Developed Through Perspective Mapping

Abstract

Background

Carers 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).

Purpose

To (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.

Methods

We 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.

Results

Fifteen 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.

Conclusions

A 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.