JMIR Publications

Background:

At the time of the UK COVID-19 lockdowns, online health forums (OHFs) were one of the relatively few remaining accessible sources of peer support for people living with breast cancer. Cancer services were heavily affected by the pandemic in many ways, including the closure of many of the customary support services. Previous studies indicate that loneliness, anxiety, distress, and depression caused by COVID-19 were common among people living with breast cancer, and this suggests that the role of OHFs in providing users with support, information, and empathy could have been of increased importance at that time.

Objective:

This study aimed to examine how people living with breast cancer shared information, experiences, and emotions in an OHF during the COVID-19 pandemic.

Methods:

This qualitative study thematically analyzed posts from the discussion forums of an OHF provided by the UK charity, Breast Cancer Now. We selected 1053 posts from the time of 2 UK lockdowns: March 16, 2020, to June 15, 2020 (lockdown 1), and January 6, 2021, to March 8, 2021 (lockdown 3), for analysis, from 2 of the forum’s boards (for recently diagnosed people and for those undergoing chemotherapy). We analyzed the data using the original 6 steps for thematic analysis by Braun and Clarke but by following a codebook approach. Descriptive statistics for posts were also derived.

Results:

We found that COVID-19 amplified the forum’s value to its users. As patients with cancer, participants were in a situation that was “bad enough already,” and the COVID-19 pandemic heightened this difficult situation. The forum’s value, which was already high for the information and peer support it provided, increased because COVID-19 caused some special information needs that forum users were uniquely well placed to fulfill as people experiencing the combined effects of having breast cancer during the pandemic. The forum also met the emotional needs generated by the COVID-19 pandemic and was valued as a place where loneliness during the pandemic may be relieved and users’ spirits lifted in a variety of ways specific to this period. We found some differences in use between the 2 periods and the 2 boards—most noticeable was the great fear and anxiety expressed at the beginning of lockdown 1. Both the beginning and end of lockdown periods were particularly difficult for participants, with the ends seen as potentially increasing isolation.

Conclusions:

The forums were an important source of support and information to their users, with their value increasing during the lockdowns for a variety of reasons. Our findings will be helpful to organizations offering OHFs and to health care workers advising people living with breast cancer about sources of support.