Evaluating the impact of COVID-19 on rare disease support groups.

Resource Type
Dataset : survey data
  • Mcmullan, Julie (Queen's University Belfast)
  • Crowe, Ashleen (Queen's University Belfast)
  • Bailie, Caitlin (Queen's University Belfast)
  • McKnight, Amy Jayne (Queen's University Belfast)
Publication Date
Funding Reference
  • Public Health Agency
  • Medical Research Council
Free Keywords
Charity; Collaborative group; Covid-19; impact; online; qualitative; rare disease; survey
  • Abstract

    The impact of the current COVID-19 pandemic has been felt worldwide. Many vulnerable populations rely heavily on peer support provided by individual or collaborative groups. This project aimed to evaluate the impact of COVID-19 on groups supporting patients with a rare disease(s). Anecdotally the current pandemic significantly changed the way in which these groups operate and the services they can provide. A targeted survey was conducted online with rare disease individual or collaborative groups. The results of the survey highlight the challenges individual and collaborative groups are facing during this pandemic and help to identify what support should be put in place to enable them to sustain their much-valued service through these trialing times. Groups have experienced an increase in calls to their helplines as well as followers to their websites and social media feeds. Groups are no longer meeting in person and so online meetings, webinars and zoom chats have become a regular occurrence. Fundraising was highlighted as an area of concern for such groups. It is hoped that this data might be used to highlight the support individual and collaborative groups require and raise awareness of the value they bring to many.
  • Methods

    Response Rates: Six rare disease individual or collaborative groups completed the online survey.
Temporal Coverage
  • 2020-03-01 / 2020-09-30
    Time Period: Sun Mar 01 00:00:00 EST 2020--Wed Sep 30 00:00:00 EDT 2020 (First stage of the pandemic)
  • 2020-07-01 / 2020-09-30
    Collection Date(s): Wed Jul 01 00:00:00 EDT 2020--Wed Sep 30 00:00:00 EDT 2020 (Summer 2020)
Geographic Coverage
  • Online
Sampled Universe
Those over 18 years old who are part of a collaborative group working in the area of rare disease.  .
The survey was uploaded onto SmartSurvey (www.smartsurvey.co.uk), and shared on the associated social media pages and websites of Northern Ireland Rare Disease Partnership (NIRDP www.nirdp.org.uk), Health Research Charities Ireland (HRCI, http://hrci.ie/) and Rare Disease Ireland (RDI, http://rdi.ie/) as well as on the Queen’s University Belfast (QUB) rare disease website (https://www.qub.ac.uk/sites/RareDisease/).  Rare disease collaborative groups who have been involved in research conducted by the Rare Disease Team at QUB previously, and provided consent, were emailed directly and invited to participate in this study.  
Collection Mode
  • web-based survey;

This study is freely available to the general public via web download.
  • Is version of
    DOI: 10.3886/E127461

Update Metadata: 2020-11-27 | Issue Number: 1 | Registration Date: 2020-11-27