ArticleIrish journal of medical science2025
Psychological supports for people living with a rare disease in Ireland: an online survey-based study.
Article in Irish journal of medical science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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8 authors.
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Abstract
backgroundPeople 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.
aimsThis study aimed to explore experiences in accessing psychological supports in the Republic of Ireland, and ways in which supports can be improved.
methodsAn 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.
resultsEligible 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.
conclusionLiving 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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