Doświadczenia opiekunów rodzinnych z systemem opieki medycznej - przypadek choroby Huntingtona

Abstract

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.