Family experiences as a caregiver for patients with Parkinson's disease: a qualitative study

Abstract

Background Parkinson's disease is a chronic progressive neurodegenerative disorder with unpredictable symptoms, which leads to stress for individuals caring for their family members. Most patients with Parkinson's disease in Indonesia are cared for by family members. Their treatment requires continuous supervision and a great deal of attention. Aims Accordingly, this research explores caregivers' experiences in caring for family members with Parkinson's disease. Methods This study is qualitative with a phenomenological design. Participants, selected via a purposive sampling technique, were individuals caring for and living with family members suffering from Parkinson's disease. The data were analysed using the Colaizzi approach. Results This research identified four themes: the ways in which members of the family adapt; the impact of the patient's condition on the caregiver; support received in providing care; and the cultural and spiritual meanings the caregiver obtained when providing care. Conclusion This study uncovered several aspects that contribute to the understanding of the life of family members as caregivers for Parkinson's disease patients. This research also found there is still limited psychosocial support from health workers, so it is necessary for them to be more proactive in providing support for family members who care for patients with Parkinson's disease.