Psychological supports for people living with a rare disease in Ireland: an online survey-based study.

IF 1.7 4区 医学 Q2 MEDICINE, GENERAL & INTERNAL Irish Journal of Medical Science Pub Date : 2025-02-26 DOI:10.1007/s11845-025-03902-x
Darragh Nerney, Emer O'Malley, Caroline Kenny, Alana Ward, Geraldine Sweeney, Vicky McGrath, Laura Egan, Eileen Treacy
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引用次数: 0

Abstract

Background: People living with rare diseases have reported high unmet support needs for access to psychological services despite the significant impact rare diseases have on mental health.

Aims: This study aimed to explore experiences in accessing psychological supports in the Republic of Ireland, and ways in which supports can be improved.

Methods: An online survey was distributed to people living with rare diseases through Irish rare disease patient organisations and expert centres (May-June 2023). Paediatric and adult participants were included with carers providing information on behalf of those age < 18 years. A PRISMA-based scoping review was conducted to explore reported gaps in psychological supports for people living with rare diseases.

Results: Eligible responses were received from 142 participants (87 adults, 55 children, 94 females, 47 males). People living with rare diseases reported a need for psychological supports at all stages of their patient journey. Participants indicated that a rare disease has an impact on educational, social, and financial aspects of daily living. A lack of understanding of the rare disease by healthcare professionals, extended waiting times, and the financial burden of accessing supports were key themes identified by participants.

Conclusion: Living with a rare disease is associated with an increased mental health burden. Gaps remain in the provision of psychological supports for people affected by rare diseases. The integration of mental health supports into the care of people living with rare diseases should be a priority for the Irish health service.

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来源期刊
Irish Journal of Medical Science
Irish Journal of Medical Science 医学-医学:内科
CiteScore
3.70
自引率
4.80%
发文量
357
审稿时长
4-8 weeks
期刊介绍: The Irish Journal of Medical Science is the official organ of the Royal Academy of Medicine in Ireland. Established in 1832, this quarterly journal is a contribution to medical science and an ideal forum for the younger medical/scientific professional to enter world literature and an ideal launching platform now, as in the past, for many a young research worker. The primary role of both the Academy and IJMS is that of providing a forum for the exchange of scientific information and to promote academic discussion, so essential to scientific progress.
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