Accepted for/Published in: JMIR Human Factors
Date Submitted: Feb 27, 2024
Date Accepted: Nov 8, 2024
Improving Online Support Groups for the Rare Disease Community: A Qualitative Study
ABSTRACT
Background:
The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel unique isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what about these groups are particularly useful or helpful for patients and parents of children with RDs.
Objective:
The objective of this qualitative study is to identify what specific features of disease-related support groups the RD community finds particularly useful or supportive and provide a set of recommendations to improve online RD support groups based on this information.
Methods:
Semi-structured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of interview, be seen by a genetics specialist at a partner healthcare institution, and be proficient in the English language. Social media use was not a prerequisite for participation and so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted via phone, recorded, and then transcribed. Interview transcripts were then coded using the six steps outlined by Braun and Clarke. Three researchers (TAD, SLV, CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data.
Results:
We conducted 31 interviews (mean age 40 years; n=27, 87% were women; n=30, 97% were non-Hispanic white). Thematic analysis revealed that online disease-related support group (DRSG) users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about a RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into a RD’s progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD related issues and concerns. Additionally, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs.
Conclusions:
This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD related information be unhelpfully dispersed amongst a multitude of support groups.
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Copyright
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