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

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 r

SUBMITTER: Nerney D 

PROVIDER: S-EPMC12031972 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature