JMIR Publications

ABSTRACT

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 research indicates that loneliness, anxiety, distress and depression caused by COVID-19 were common amongst people living with breast cancer, and this suggests that the role of the OHF in providing users with support, information and empathy could have been of increased importance at that time.

Objective:

The aim of this paper is to examine how people living with breast cancer used an online health forum during COVID-19.

Methods:

This qualitative study thematically analysed posts from the discussion forums of an OHF provided by the UK charity, Breast Cancer Now. We selected 1,053 posts from the time of two UK lockdowns: 16 March - 15 June 2020 (Lockdown 1), and 6 January – 8 March 2021 (Lockdown 3) for analysis from two of the forum’s boards (for recently diagnosed people and for those undergoing chemotherapy). We analysed the data using Braun & Clarke’s original six steps for thematic analysis, but following a ‘codebook’ approach. Some descriptive statistics were also obtained.

Results:

We found that COVID-19 amplified the forum’s value to its users. As cancer patients, participants were in a situation that was ‘bad enough already’ and COVID-19 amplified this. The forum, already highly regarded, became even more valued for the information and peer support it continued to provide. It also increased in value because COVID-19 caused some special information needs that the forum users were uniquely well-placed to fulfil, as people experiencing the ‘double whammy’ of cancer-during-covid. The forum also met emotional needs generated by the pandemic, and was valued as a place where loneliness during COVID-19 might be relieved and users’ spirits lifted in a variety of ways specific to the time. We found some differences in usage between the two periods and the two boards: most noticeable was the greater fear and anxiety expressed at the start of Lockdown 1. Both the start and end of the lockdown periods were particularly difficult for participants. The end of lockdowns were seen as potentially increasing isolation, as patients saw everyone else resuming normal life, whilst they had to remain cautious.

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 healthcare workers advising people living with breast cancer on sources of support.