Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Center of Expertise for Parkinson and Movement Disorders, P.O. Box 9101 (internal code 914), 6500 HB, Nijmegen, The Netherlands.
Inge Mutsaers Research and Writing, Nijmegen, The Netherlands.
J Neurol. 2024 Aug;271(8):5312-5325. doi: 10.1007/s00415-024-12474-2. Epub 2024 Jun 11.
Living with young onset Parkinson's disease (YOPD) not only affects the persons with YOPD, but also their families. Although caregiver burden has been researched in Parkinson's disease in general, little is known about the specific impact of having an (ex-)partner with YOPD. This exploratory study aimed to explore the impact of having an (ex-)partner with YOPD on daily life.
We used a qualitative approach including semi-structured interviews with 16 (ex-)partners of people with YOPD. Interviews were audio-taped and transcribed verbatim. Qualitative thematic analysis was used to analyze the interview data.
Qualitative analysis revealed nine themes to describe the impact of having an (ex-)partner with YOPD: (1) Psychosocial impact, (2) Impact on taking care of children, (3) Impact on working life, (4) Impact on intimacy and (sexual) relationships, (5) Impact on daily life, (6) Acceptance and other coping strategies, (7) Thoughts about the future, (8) Autonomy and (9) Caregiver support.
This study provides important findings that will inform future interventions that aim to reduce or even prevent caregiver burden, as well as to inform healthcare professionals to recognize the needs of caregivers of people with YOPD.
患有早发性帕金森病（YOPD）不仅会影响患者本人，还会影响他们的家人。尽管已经对帕金森病患者的照顾者负担进行了研究，但对于有 YOPD 患者（前）伴侣的具体影响知之甚少。本探索性研究旨在探讨有 YOPD 患者（前）伴侣对日常生活的影响。
我们采用定性方法，包括对 16 名 YOPD 患者的（前）伴侣进行半结构化访谈。访谈进行了录音，并逐字转录。采用定性主题分析来分析访谈数据。
定性分析揭示了九个主题来描述有 YOPD 患者（前）伴侣的影响：（1）心理社会影响，（2）对照顾子女的影响，（3）对工作生活的影响，（4）对亲密关系和（性）关系的影响，（5）对日常生活的影响，（6）接受和其他应对策略，（7）对未来的想法，（8）自主权和（9）照顾者支持。
本研究提供了重要的发现，这些发现将为旨在减轻甚至预防照顾者负担的未来干预措施提供信息，并告知医疗保健专业人员认识到 YOPD 患者照顾者的需求。
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