Domaradzki Jan
Katedra Nauk Społecznych UM im. Karola Marcinkowskiego w Poznaniu.
Psychiatr Pol. 2016;50(2):375-391. doi: 10.12740/PP/59103.
Despite a growing interest in the health and psychosocial consequences of caring for a person with Huntington's disease (pHD), little is still known about family caregivers of such patients in Poland. At the same time, while researchers focus on the needs, quality of life and caregiving burden, they frequently omit caregivers'experiences with healthcare services. This paper aims to report a study on the perception of healthcare services of family caregivers of pHD.
The research was carried out between August and December 2014 among 55 family caregivers of pHD. The respondents were recruited via the Polish Huntington Disease Association and a discussion forum for pHD and their carers. The material was collected via semi-structured interviews and analysed using a content and thematic analysis of the transcripts.
Four themes emerged during the interviews: 1) Lack of information on HD from physicians; 2) Negative experience with health professionals 3) Lack of emotional support, and 4) General dissatisfaction with healthcare services. Caregivers were frustrated by the lack of knowledge about HD from physicians and believed that they do not show enough empathy and support to caregivers. They also felt let down by the system and expressed general lack of trust in the standard of healthcare.
This study revealed HD caregivers'complex needs for healthcare assistance and emotional support. For that reason health and social professionals should monitor caregivers' mental health, identify the sources of their distress and support effective strategies to cope with the stress.
尽管人们对照顾亨廷顿病患者（pHD）的健康和心理社会后果的兴趣日益浓厚，但在波兰，对于此类患者的家庭照顾者仍知之甚少。同时，虽然研究人员关注需求、生活质量和照顾负担，但他们经常忽略照顾者在医疗服务方面的经历。本文旨在报告一项关于pHD家庭照顾者对医疗服务认知的研究。
2014年8月至12月间，对55名pHD家庭照顾者进行了研究。通过波兰亨廷顿病协会以及一个针对pHD患者及其照顾者的讨论论坛招募了受访者。通过半结构化访谈收集材料，并对访谈记录进行内容和主题分析。
访谈中出现了四个主题：1）医生缺乏关于亨廷顿病的信息；2）与医疗专业人员的负面经历；3）缺乏情感支持；4）对医疗服务的总体不满。照顾者因医生对亨廷顿病缺乏了解而感到沮丧，并认为他们对照顾者没有表现出足够的同理心和支持。他们也对该系统感到失望，并表示对医疗保健标准普遍缺乏信任。
这项研究揭示了亨廷顿病照顾者对医疗援助和情感支持的复杂需求。因此，健康和社会专业人员应监测照顾者的心理健康，确定他们痛苦的根源，并支持有效的应对压力策略。
