Zarotti Nicolò, D'Alessio Barbara, Scocchia Marta, Casella Melissa, Squitieri Ferdinando
Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA14AT, UK.
Department of Clinical Neuropsychology, Manchester Centre for Clinical Neurosciences, Salford M68HD, UK.
NeuroSci. 2024 Mar 28;5(2):98-113. doi: 10.3390/neurosci5020007. eCollection 2024 Jun.
People with Huntington's disease (HD) often experience psychological difficulties linked with disease progression and the adjustment to living with a chronic condition, which are also frequently shared by their informal caregivers (e.g., partners). Although limited, the current literature on psychological care for people with HD shows that interventions have the potential to drive improvements in mental health and quality of life. However, the experience of accessing and receiving psychological support for HD remains unclear across several countries. This study adopted a qualitative design to explore the experiences of psychological support for HD from the perspectives of patients and caregivers living in Italy. Semi-structured interviews were carried out with 14 participants-7 patients with early-manifest HD and 7 partners acting as their caregivers. The resulting data were analysed through thematic analysis. Four overarching themes were identified: (1) the availability of psychological support for HD, (2) barriers to accessing psychological support, (3) enablers to accessing psychological support, and (4) the future development of public psychological provision for HD. In Italy, patients and caregivers perceive public psychological support for HD as unavailable or inadequate, and private therapy is often seen as unaffordable. Barriers such as distrust in public healthcare and preconceptions about therapy may limit access, while advice from HD organisations and seeking therapy for other reasons may act as enablers. A strong emphasis is put on the need for accessible public psychological support throughout all the stages of the condition.
患有亨廷顿舞蹈症(HD)的人经常会经历与疾病进展以及适应慢性病生活相关的心理困难,他们的非正式护理人员(如伴侣)也常常有同样的困扰。尽管关于HD患者心理护理的现有文献有限,但研究表明干预措施有可能改善心理健康和生活质量。然而,在多个国家,HD患者获得和接受心理支持的经历仍不明确。本研究采用定性设计,从意大利患者及其护理人员的角度探讨HD心理支持的经历。对14名参与者进行了半结构化访谈,其中包括7名早期出现症状的HD患者和7名作为其护理人员的伴侣。通过主题分析对所得数据进行了分析。确定了四个总体主题:(1)HD心理支持的可获得性;(2)获得心理支持的障碍;(3)获得心理支持的促进因素;(4)HD公共心理服务的未来发展。在意大利,患者和护理人员认为HD的公共心理支持无法获得或不足,而私人治疗通常被认为负担不起。对公共医疗保健的不信任和对治疗的先入之见等障碍可能会限制获得心理支持的机会,而HD组织的建议和因其他原因寻求治疗可能会起到促进作用。研究强烈强调在疾病的各个阶段都需要可获得的公共心理支持。