Family caregivers experiences of provided home care to persons with Parkinson's disease

Abstract

Engelsk sammendrag (abstract): Family caregivers constitute an important part of the day-to-day service for persons with Parkinson’s disease. As the disease progresses, the need for municipal home care assistance will increase. The aim of this study was to explore how family caregivers of persons with Parkinson’s disease (PD-caregivers) experience their situation when they share caring with the home care services. Nine family PD-caregivers who were enrolled in home care units in one region in Norway were interviewed. Interpretive analysis was used. The main interpretation of the caregivers’ experiences was labelled: «Being on call around the clock despite providing home care». Three interpretations that highlight the meanings identified in different aspects of the informants’ experiences contribute to the main interpretation: Challenges with clarifying and delimiting responsibility, Relief is not equivalent to feeling safe and satisfied, and Correct management of Parkinson’s disease medication does not fit in with the routines of home care. This study suggests that taking advantage of professional home care does not excuse family PD-caregivers from their experience of being the overall responsible for the care and well-being of the care-recipient.