Caring for patients with Huntington disease - a survey of caregivers’ experiences and views

Introduction. Despite the growing interest in the consequences of caring for patients with Huntington disease (pHD), little is known about the family caregivers of such patients in Poland. Identification of their needs can improve caregivers’ wellbeing, the quality of care and condition of pHD. The aim of this study was to understand the social functioning of family caregivers of pHD and their perception of the caregiving role. Materials and methods. Data was collected from 55 family caregivers of pHD. A structured questionnaire was used consisting of 86 questions subsumed into five domains: ‘Problems’ and ‘Feelings related to caregiving’, ‘Attitude toward caregiving’, ‘Satisfaction with life’ and ‘Perception of healthcare services’. Correlations between the different scales and other characteristics were measured as potential predictors of the burden. Non-parametric statistical methods were used in the analysis. Results. Most respondents experienced a high (50.9%) or moderate (30.95%) feeling of burden. Although 70.9% of caregivers perceived caregiving positively, for many it was a source of negative feelings. Only 10.9% of respondents declared that caregiving decreased their QoL. Carers’ perception of caregiving was mostly influenced by their negative experiences with the healthcare system. Respondents’ domicile, religious practices, age, income, marital status, time of diagnosis and of caregiving, patient’s age and stage of disease also influenced their experiences. Conclusions. Health professionals and policy planners should focus on monitoring caregivers’ health, identifying their needs, sources of distress, and supporting caregivers’ coping strategies. They should also be better educated about the clinical and practical aspects of HD.