Carer reported experiences: Supporting someone with a rare disease

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

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)
3 Downloads (Pure)

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 languageEnglish
Pages (from-to)1097-1108
Number of pages12
JournalHealth and Social Care in the Community
Volume30
Issue number3
Early online date6 May 2021
DOIs
Publication statusPublished (in print/issue) - 11 Apr 2022

Bibliographical note

Funding Information:
JM is supported by funding support from the Medical Research Council – Northern Ireland Executive support of the Northern Ireland Genomic Medicine Centre though Belfast Health and Social Care Trust [MC_PC_16018]. AC is supported by a Department for the Economy PhD studentship award. We thank all individuals and groups who participated in this study. We also thank NIRDP (www.nirdp.org.uk) and QUB (https://www.qub.ac.uk/research-centres/CentreforPublicHealth/) for helping promote the study.

Funding Information:
JM is supported by funding support from the Medical Research Council – Northern Ireland Executive support of the Northern Ireland Genomic Medicine Centre though Belfast Health and Social Care Trust [MC_PC_16018]. AC is supported by a Department for the Economy PhD studentship award.

Publisher Copyright:
© 2021 John Wiley & Sons Ltd.

Keywords

  • Adult
  • Caregivers/psychology
  • Female
  • Health Personnel
  • Humans
  • Male
  • Rare Diseases/therapy
  • Self-Help Groups
  • Social Support
  • questionnaire
  • rare disease
  • Northern Ireland
  • awareness
  • caregiver
  • focus group
  • survey
  • public health

Fingerprint

Dive into the research topics of 'Carer reported experiences: Supporting someone with a rare disease'. Together they form a unique fingerprint.

Cite this