Evidence map›Paper›PMID 39483497›Full record

ArticleNeuroSci2024

"I Wouldn't Even Know What to Ask for": Patients' and Caregivers' Experiences of Psychological Support for Huntington's Disease in Italy.

Nicolò Zarotti, Barbara D'Alessio, Marta Scocchia, Melissa Casella, Ferdinando Squitieri

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PubMed Full text at PMC Publisher
In one paragraph

Article in NeuroSci, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Review
  4. Article
  5. Review
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  8. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Nicolò ZarottiDivision of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA14AT, UK.ORCID https://orcid.org/0000-0002-8129-6151
Barbara D'AlessioCentre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy; barbara.dalessio@lirh.it (B.D.); marta.scocchia@lirh.it (M.S.); melissa.casella@lirh.it (M.C.); ferdinando.squitieri@lirh.it (F.S.).
Marta ScocchiaCentre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy; barbara.dalessio@lirh.it (B.D.); marta.scocchia@lirh.it (M.S.); melissa.casella@lirh.it (M.C.); ferdinando.squitieri@lirh.it (F.S.).ORCID https://orcid.org/0009-0000-5908-8447
Melissa CasellaCentre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy; barbara.dalessio@lirh.it (B.D.); marta.scocchia@lirh.it (M.S.); melissa.casella@lirh.it (M.C.); ferdinando.squitieri@lirh.it (F.S.).
Ferdinando SquitieriCentre for Neurological Rare Diseases (CMNR) of LIRH Foundation, 00161 Rome, Italy; barbara.dalessio@lirh.it (B.D.); marta.scocchia@lirh.it (M.S.); melissa.casella@lirh.it (M.C.); ferdinando.squitieri@lirh.it (F.S.).ORCID https://orcid.org/0000-0002-7397-1727

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

clinical psychologyHuntington’s diseaseItalypsychological supportpsychotherapy

Identifiers

PMID39483497
PMCPMC11478141

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.