Family caregivers’ decision process to institutionalize persons with Parkinson's disease: A grounded theory study

Abstract

BackgroundParkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers. AimsThe purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility. ParticipantsTwenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease. MethodGrounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis. FindingsThe caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease. ConclusionsImplications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.