{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T17:08:52Z","timestamp":1788368932610,"version":"build-2803163510"},"reference-count":54,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2024,3,28]],"date-time":"2024-03-28T00:00:00Z","timestamp":1711584000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["NeuroSci"],"abstract":"<jats:p>People with Huntington\u2019s 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\u20147 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.<\/jats:p>","DOI":"10.3390\/neurosci5020007","type":"journal-article","created":{"date-parts":[[2024,3,28]],"date-time":"2024-03-28T13:20:53Z","timestamp":1711632053000},"page":"98-113","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["\u201cI Wouldn\u2019t Even Know What to Ask for\u201d: Patients\u2019 and Caregivers\u2019 Experiences of Psychological Support for Huntington\u2019s Disease in Italy"],"prefix":"10.3390","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8129-6151","authenticated-orcid":false,"given":"Nicol\u00f2","family":"Zarotti","sequence":"first","affiliation":[{"name":"Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA14AT, UK"},{"name":"Department of Clinical Neuropsychology, Manchester Centre for Clinical Neurosciences, Salford M68HD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"D\u2019Alessio","sequence":"additional","affiliation":[{"name":"Centre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-5908-8447","authenticated-orcid":false,"given":"Marta","family":"Scocchia","sequence":"additional","affiliation":[{"name":"Centre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Casella","sequence":"additional","affiliation":[{"name":"Centre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7397-1727","authenticated-orcid":false,"given":"Ferdinando","family":"Squitieri","sequence":"additional","affiliation":[{"name":"Centre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy"},{"name":"Huntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, 71013 Foggia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2024,3,28]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1016\/B978-0-444-63233-3.00017-8","article-title":"Huntington Disease","volume":"147","author":"Ghosh","year":"2018","journal-title":"Handb. 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