Carer reported experiences: supporting someone with a rare disease

Julie McMullan, Ashleen Crowe, Kirsten Downes, Helen McAneney, Amy Jayne McKnight

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8 Citations (Scopus)
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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.
Original languageEnglish
Pages (from-to)1097-1108
JournalHealth and Social Care in the Community
Early online date06 May 2021
Publication statusPublished - 01 May 2022

Bibliographical note

Preprint available at medRxiv 11th July 2020


  • awareness
  • caregiver
  • focus group
  • Northern Ireland
  • public health
  • questionnaire
  • rare disease
  • survey


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