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

Abstract

Objectives 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 study 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. Data description 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 while also raising awareness of the value they bring to many.

Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits

“…17 While most past studies focus on face-to-face support groups, recent technological advancement trends, which were significantly utilised during the COVID-19 pandemic, have shifted meetings towards online communication. 18,19 We established an online support group for patients and parents of children with inflammatory eye disease. This study aims to characterise members of this group and assess the expectations and perceived benefits of the members.…”

A database on the socioeconomic and behavioral impact in Sri Lanka through multiple waves of COVID-19

“…Several datasets can be found assessing the impact of COVID in countries. But they are mostly con ned to one speci c area of impact, namely, Behavior changes [1], physical and mental health-related impact [2,3,4], Economic Impact [5], etc.…”

“…The surveying method adopted for the collection of data varies from online [1,2,6], web surveys [3] and, face-to-face [4].…”

Screening Out False Participants in Research Recruitment from Social Media Groups

“…The COVID-19 pandemic accelerated the movement of these groups online and led to the generation of new groups, some of which cross international borders. [1][2][3] Survivors and others from different geographic locations and age and socioeconomic brackets whose quality of life has been impacted by illness connect and discuss their shared experiences with disease, injury, or recovery.…”

“…Survivorship and peer support groups that formerly existed only in face-to-face formats at hospitals, clinics, and community centers are now common on social media platforms like Facebook. The COVID-19 pandemic accelerated the movement of these groups online and led to the generation of new groups, some of which cross international borders 1-3. Survivors and others from different geographic locations and age and socioeconomic brackets whose quality of life has been impacted by illness connect and discuss their shared experiences with disease, injury, or recovery.…”