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

Principal Investigator(s): View help for Principal Investigator(s) Julie Mcmullan, Queen's University Belfast; Ashleen Crowe, Queen's University Belfast; Caitlin Bailie, Queen's University Belfast; Amy Jayne McKnight, Queen's University Belfast

Version: View help for Version V1

Name	File Type	Size	Last Modified
DF1 Summary data.pdf	application/pdf	446.8 KB	11/26/2020 04:49:AM
DF2 Common concerns shared on helpline.docx	application/vnd.openxmlformats-officedocument.wordprocessingml.document	39.8 KB	11/26/2020 09:32:AM
DF3 Positive and negative impacts on groups.docx	application/vnd.openxmlformats-officedocument.wordprocessingml.document	25.2 KB	11/25/2020 08:44:PM
DF4 Help for the future requested by the groups.docx	application/vnd.openxmlformats-officedocument.wordprocessingml.document	26.4 KB	11/25/2020 08:45:PM

Project Citation:

Mcmullan, Julie, Crowe, Ashleen , Bailie, Caitlin , and McKnight, Amy Jayne. Evaluating the impact of COVID-19 on rare disease support groups. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2020-11-26. https://doi.org/10.3886/E127461V1

Project Description

Summary: 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.

Funding Sources: Public Health Agency; Medical Research Council

Scope of Project

Subject Terms: Charity; Collaborative group; Covid-19; impact; online; qualitative; rare disease; survey

Geographic Coverage: Online

Time Period(s): 3/2020 – 9/2020 (First stage of the pandemic)

Collection Date(s): 7/2020 – 9/2020 (Summer 2020)

Universe: Those over 18 years old who are part of a collaborative group working in the area of rare disease.

Data Type(s): survey data

Methodology

Response Rate: Six rare disease individual or collaborative groups completed the online survey.

Sampling: 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(s): web-based survey

Unit(s) of Observation: Rare disease collaborative groups

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Published Versions

V1 [2020-11-26]

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