Lageman Sarah K, Mickens Melody N, Cash Therese V
Department of Neurology, Parkinson's and Movement Disorders Center, Virginia Commonwealth University, P.O. Box 980539, Richmond, VA 23298-0539, USA.
Department of Psychology, Virginia Commonwealth University, P.O. Box 842018, Richmond, VA 23284-2018, USA.
Geriatr Nurs. 2015 May-Jun;36(3):197-201. doi: 10.1016/j.gerinurse.2015.01.002. Epub 2015 Mar 3.
Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics.
帕金森病患者照料者对服务需求及护理障碍的认知尚未得到充分探究。本研究旨在评估照料者对自身及患者医疗和支持性服务需求的认知。向帕金森病患者的照料者样本（n = 66）发放了在线及纸质调查问卷。尽管照料者报告了积极的生活质量及对护理工作的适应情况，但近一半的样本表示对护理工作感到压力。照料者报告称，最需要症状管理、应对生活方式变化、未来规划、人际关系和认知方面的服务以及健康策略。报告的患者获得护理的障碍包括服务可及性有限以及服务缺乏保险覆盖。这些发现表明，有必要改善患者获得服务的机会，并在运动障碍专科诊所加大促进照料者健康的力度。
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