文章基本信息

标题：Living with Parkinson’s disease: disease and medication experiences of patients and caregivers
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作者：Yi-Wen Chen ; Chu-Yun Huang ; Jo-Hsin Chen 等
期刊名称：International Journal of Qualitative Studies on Health and Well-being
电子版ISSN：1748-2631
出版年度：2022
卷号：17
期号：1
页码：1-12
DOI：10.1080/17482631.2021.2018769
语种：English
出版社：Taylor & Francis
摘要：Purpose Symptoms and medication use in patients with Parkinson’s disease (PD) affect the quality of life of patients and caregivers, yet prior research seldom focused on their experiences with medications. This study explored comprehensive living and medication experience from patients with PD and their caregivers. Methods Patients diagnosed with PD for ≥2 years, with or without their caregivers, were recruited from an outpatient clinic in Taiwan. Semi-structured in-depth interviews were conducted based on the Common Sense Model. A qualitative content analysis was used to identify salient themes from verbatim transcripts. Results In total, 15 patients and eight caregivers were interviewed. Five themes were derived: (1) symptoms and help-seeking behaviours before a diagnosis, (2) emotional impacts and life adaptations after a PD diagnosis, (3) life affected by medications, (4) experiences of caregivers in taking care of PD patients, and (5) communication between doctors and patients. Conclusions Patients frequently adjusted their daily schedules to live with PD and the medication side effects. Caregivers struggle to overcome caring burdens and to stay positive to support patients. More attention on providing medication information, mental support, and communication between stakeholders is needed to improve the quality of life of patients and caregivers.
关键词：Parkinson’s disease ;medication therapy ;patient ;caregiver ;qualitative research ;medication experience