Family members' experiences of everyday caregiving for a family member living with Parkinson's disease: a qualitative thematic analysis study

家庭成员对患有帕金森病的家庭成员进行日常照护的经历:一项定性主题分析研究

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Abstract

BACKGROUND: In the daily life of individuals living with Parkinson's disease, their loved ones are crucial. Adapting family members to the patient's condition, support in providing care, and psychosocial adaptations is essential. AIM: To explore family members' perception of everyday caregiving for a family member living with Parkinson's disease and to describe their role in the care and everyday life. METHODS: In a descriptive, qualitative thematic analysis study, semi-structured interviews were conducted with ten people between the ages of 20 and 70, the closest family members of people living with Parkinson's disease. The analysis of the collected data was carried out using thematic analysis. RESULTS: We generated the main theme: "Living with a family member with Parkinson's disease", with associated secondary-level sub-themes: "Response", "Change", "Care", and "Support". Family members of individuals living with Parkinson's disease frequently encounter similar life situations. The most notable transformation in their daily lives primarily revolves around adapting to various activities. CONCLUSIONS: Family members are the ones who most often take on the role of caregiver and provide help to their loved ones. Many of them accept the disease as a part of everyday life and learn to live with it. It is of fundamental importance that we offer family members the necessary support, knowledge, and involvement in holistic treatment and care.

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