Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
BMC Prim Care. 2024 May 7;25(1):155. doi: 10.1186/s12875-024-02408-2.
Huntington's disease (HD) has substantial impact on patients and carers' lives. Managing patients in the advanced phase of HD may be challenging to primary health care professionals. The aim of this study is to elicit health care professionals' experiences of managing the challenges with patients with advanced HD in primary health care.
We did a qualitative study, collecting data from four focus group interviews with 22 primary health care professionals who had experience with caring for patients with HD in Norway. The data were analysed using a qualitative content analysis method, systematic text condensation.
We found that health care professionals who care for patients with HD in primary health care experience challenges related to patients' behaviour, family members and caregivers, professionals' individual competency, and the organizational context. They conveyed that successful care and management of patients with advanced HD was dependent on individuals' competency and "everyday tactics", well-functioning teams, and leadership and organizational support.
In addition to individual competencies, including being personally suitable for the job, well-functioning primary care teams, and organization support and training is important for health care professionals' ability to manage patients with advanced HD in primary health care.
亨廷顿舞蹈病（HD）对患者及其照顾者的生活有重大影响。初级保健专业人员在管理 HD 晚期患者时可能会面临挑战。本研究旨在了解初级保健中管理 HD 晚期患者挑战的医疗保健专业人员的经验。
我们进行了一项定性研究，从挪威有照顾 HD 患者经验的 22 名初级保健专业人员的四个焦点小组访谈中收集数据。使用定性内容分析方法，系统文本浓缩对数据进行分析。
我们发现，在初级保健中照顾 HD 患者的医疗保健专业人员在患者行为、家庭成员和照顾者、专业人员的个人能力以及组织背景方面都面临挑战。他们认为，成功的护理和管理 HD 晚期患者取决于个人能力和“日常策略”、运作良好的团队以及领导力和组织支持。
除了个人能力外，包括适合该工作的个人能力、运作良好的初级保健团队以及组织支持和培训，对于医疗保健专业人员在初级保健中管理 HD 晚期患者的能力也很重要。
