Røthing Merete, Malterud Kirsti, Frich Jan C
Research Network on Integrated Health Care in Western Norway, Helse Fonna Local Health Authority, Haugesund, Norway.
Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
Scand J Caring Sci. 2015 Dec;29(4):803-9. doi: 10.1111/scs.12212. Epub 2015 Apr 28.
Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient's illness may be unpredictable or not well understood by some of those involved in the treatment and care.
The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals.
To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross-case method for thematic analysis of qualitative data.
We found that family caregivers approached health services hoping to understand the illness course and to share their concerns and stories with skilled and trustworthy professionals. Family caregivers felt their involvement in consultations and access to ongoing exchanges of knowledge were important factors in improved health services. They also felt that the clarity of roles and responsibilities was crucial to collaboration.
Family caregivers should be acknowledged for their competences and should be involved as contributors in partnerships with healthcare professionals. Our study suggests that building respectful partnerships with family caregivers and facilitating the mutual sharing of knowledge may improve the coordination of care. It is important to establish clarity of roles adjusted to caregivers' individual resources for managing responsibilities in the care process.
在专科医院或社区基层医疗系统中，家庭照护者与医疗专业人员之间的合作可能具有挑战性。在严重慢性病病程中，特定时间可能会涉及多名医疗专业人员，而且患者的病情可能不可预测，或者某些参与治疗和照护的人员对其了解不足。
本研究的目的是探讨亨廷顿舞蹈症患者的家庭照护者在与医疗专业人员合作方面的经历和期望。
为了从家庭照护者的角度阐明合作情况，我们对15名有照护亨廷顿舞蹈症各阶段家庭成员经验的成年参与者进行了一项探索性定性访谈研究。采用系统文本浓缩法对数据进行分析，这是一种用于定性数据主题分析的跨案例方法。
我们发现，家庭照护者寻求医疗服务，希望了解疾病进程，并与经验丰富且值得信赖的专业人员分享他们的担忧和经历。家庭照护者认为他们参与会诊以及能够持续获取知识交流是改善医疗服务的重要因素。他们还认为角色和责任的明确对合作至关重要。
应认可家庭照护者的能力，并让他们作为合作伙伴参与到与医疗专业人员的合作中。我们的研究表明，与家庭照护者建立相互尊重的合作关系并促进知识的相互分享可能会改善照护协调。根据照护者在照护过程中承担责任的个人资源来明确角色很重要。
