Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study, 2022, Day

[Andy]

ABSTRACT

Background:

Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact long COVID patients and their lived experiences of the condition.

Objective:

The aim of this study is to explore the roles that online peer support groups take on, and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures.

Methods:

I conducted 11 semi-structured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results through manually conducting thematic analysis.

Results:

Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 7 themes and 19 subthemes through thematic analysis. The identified themes were: (1) professional support, (2) societal awareness, (3) diversity of groups, (4) group format, (5) social connections, (6) engagement behavior, and (7) desired changes. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements.

Conclusions:

If employed appropriately, online peer support groups could be immensely beneficial for patient wellbeing, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support’s benefits within broader care structures.

Preprint, https://preprints.jmir.org/preprint/37674/accepted

 

[rvallee]

Patient groups are reporting unmet needs that only professional healthcare services can provide. They are not provided, this is literally the 1st theme raised. It is constantly discussed on social media, how completely useless healthcare services are, how they don't help, how they gaslight and dismiss everything as anxiety, or in the best cases can do nothing to help.

The groups are not filling gaps, they are exposing them, raising them with professionals, and the professionals, somehow, think the groups are significant, and the substance of what they raise can essentially be ignored?

It can't speak of prioritizing patient voices when patients have to organize to expose medical neglect, and professionals remain clueless to the fact that they are raising serious systemic failure even as they hear and nod. This isn't one of those things where ranting helps in itself, issues are raised, they are ignored, and nothing happens.

The ivory tower model of medicine is a disaster, simply too detached from the lived reality of patients. Robotic detachment from any human need or connection.

 

[Peter T]

The groups are not filling gaps, they are exposing them, raising them with professionals, and the professionals, somehow, think the groups are significant, and the substance of what they raise can essentially be ignored?

The authors do hint that there are the right and the wrong sort of online groups, though I guess our and their understanding of what fits into which category may not be fully congruent.