The lived experience of caring for someone with Parkinson’s disease : an interpretative phenomenological analysis

Abstract

Parkinson’s disease is a progressive condition in which individuals can experience significant declines in every aspect of their life (Giles et al., 2015). Caring for someone with Parkinson’s disease can be difficult and challenging as such caregiving requires a lot of time and energy, which may lead to caregiver strain (Muhajan et al., 2020). This study aimed to investigate the lived experience of caregivers who look after individuals with Parkinson’s disease. The objective was to understand how this type of caring is experienced, by exploring how and in what ways Parkinson’s disease impacts caregivers. This research sought to understand how the caring role shapes the carer’s life and in what ways, if at all. Empirical research on the experience of caring for someone with Parkinson’s disease is limited in Malta. Hence, this study aimed to increase knowledge about this and help raise awareness and appreciate the complexity of such role. Six caregivers took part in this study and data was collected via audio-recorded semi-structured interviews. The transcripts were analysed using Interpretative Phenomenological Analysis. Three superordinate themes were generated, with each theme expanding into various subthemes. Findings suggested that caregivers are faced with numerous hardships at the cost of putting their loved one’s needs before their own. Moreover, professional support provided had a role on the caregivers’ experiences. A recommendation based on the study’s findings would be for health care providers to be aware of local support services and encourage patients and caregivers to engage in such services. Future research could look into how men feel when they take on the role of caregiver.