This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty-seven respondents took part, 15.8% male, 84.2% female. Thirty-two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups.
Bibliographical notePreprint available at medRxiv 11th July 2020
- ORIGINAL ARTICLE
- ORIGINAL ARTICLES
- focus group
- Northern Ireland
- public health
- rare disease
FingerprintDive into the research topics of 'Carer reported experiences: supporting someone with a rare disease'. Together they form a unique fingerprint.
Improving communication and identifying priorities for modernising rare disease services with healthcare practitioners, patients, families and advocacy groupsAuthor: Crowe, A. L., Dec 2023
Student thesis: Doctoral Thesis › Doctor of PhilosophyFile