Abstract
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 language | English |
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Pages (from-to) | 1097-1108 |
Journal | Health and Social Care in the Community |
Volume | 30 |
Early online date | 06 May 2021 |
DOIs | |
Publication status | Published - 01 May 2022 |
Bibliographical note
Preprint available at medRxiv 11th July 2020doi: https://doi.org/10.1101/2020.07.10.20150581
Keywords
- ORIGINAL ARTICLE
- ORIGINAL ARTICLES
- awareness
- caregiver
- focus group
- Northern Ireland
- public health
- questionnaire
- rare disease
- survey
Fingerprint
Dive into the research topics of 'Carer reported experiences: supporting someone with a rare disease'. Together they form a unique fingerprint.Student theses
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Improving communication and identifying priorities for modernising rare disease services with healthcare practitioners, patients, families and advocacy groups
Author: Crowe, A. L., Dec 2023Supervisor: McKnight, A. (Supervisor) & Duffy, G. (Supervisor)
Student thesis: Doctoral Thesis › Doctor of Philosophy
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