Come for Information, Stay for Support: Harnessing the Power of Online Health Communities for Social Connectedness during the COVID-19 Pandemic

Green, Brian M.; Hribar, Casey A; Hayes, Sara; Bhowmick, Amrita; Herbert, Leslie Beth

doi:10.3390/ijerph182312743

Cited by 9 publications

(10 citation statements)

References 28 publications

(36 reference statements)

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“…Our study supports that of Patel et al [ 60 ] and Zhang et al [ 9 ], who noted that forums were used the most at the beginning of the first lockdown. It also supports the finding by Green et al [ 43 ] that interest in COVID-19 had decreased substantially by later lockdowns. There was less discussion about it by RDwBC users, and there were no threads specifically for COVID-19 in the CMT forum.…”

Section: Discussionsupporting

confidence: 89%

“…A US survey of 28 OHFs for people with chronic illnesses over 13 months found that they were used more during peak lockdown times and the desire for emotional or mental health support increased over time. When moderated well, OHFs can “provide a powerful, intermediate and safe space where conversations about mental and emotional wellbeing can be normalized” [ 43 ]. However, potential negative effects include the distress of hearing about others’ negative experiences regarding COVID-19 [ 44 ].…”

Section: Introductionmentioning

confidence: 99%

“…Zhang et al [ 9 ] conducted qualitative analysis of posts from a US-based forum for people living with breast cancer, focusing only on how the users felt about the treatment delays and their views of treatment, rather than on the role of the forum more generally. Green et al [ 43 ] investigated the users of 28 OHFs with varied chronic health conditions at different stages of the COVID-19 pandemic. They compared user responses to a survey over a few days from a selection of months between March 2020 and April 2021, rather than covering 2 lockdown periods as done in this study.…”

Section: Introductionmentioning

confidence: 99%

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Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

et al. 2023

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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.

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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

et al. 2023

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“…However, this prior research did not explore the emotional impacts of a cancer diagnosis, such as fear, depression, anxiety, and suicidal ideation, as identified by Paulson et al [9]. Patients may feel less constrained when communicating online than in a focus group because they can remain anonymous during their interactions with others in virtual discussion groups or boards [10], and discussions about the emotional health impacts of a major diagnosis can be normalized [4].…”

Section: Where Are We Now?mentioning

confidence: 99%

CORR Insights®: Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Templeton

2023

Clin Orthop Relat Res

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“…Importantly, participation in online health communities extends beyond patients with health conditions to include dedicated caregivers and concerned family members and friends. Within these online health communities, participants engage in behaviors such as (1) information seeking and learning, (2) information sharing and disclosure, and (3) community building [ 12 , 16 , 19 , 22 ]. On balance, research conducted across a range of disciplinary contexts has suggested that online health communities provide a plethora of benefits to participants, including actionable health information and improved mental health outcomes.…”

Section: Introductionmentioning

confidence: 99%

Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults

Neely,

Hao

2023

JMIR Form Res

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Background Research examining online health communities suggests that individuals affected by chronic health conditions can obtain valuable information and social support through participation in peer-to-peer web-based information exchanges, including information sharing and seeking behaviors. The risks and rewards of these same behaviors in the case of acute illnesses, such as COVID-19, are less well understood, though there is reason to believe that individuals with COVID-19 and other acute illnesses may accrue similar benefits. Objective This study examines the propensity of American adults to disclose and discuss their COVID-19 diagnosis and symptoms on social media while actively infected with the SARS-CoV-2 virus, as well as to engage in peer-to-peer information seeking in order to better understand the illness that they are experiencing. Additionally, this study seeks to identify the motivations for these behaviors as well as their subsequent impacts on perceived social connectedness and health anxiety in patients with COVID-19. Methods We conducted a representative survey of 2500 US-based adults using a sample purchased through an industry-leading market research provider. Participants were selected through a stratified quota sampling approach to ensure a representative sample of the US population. Balanced quotas were determined (by region of the country) for gender, age, race, ethnicity, and political affiliation. Responses were analyzed from 946 participants who reported having an active social media account and testing positive for COVID-19 at least once since the start of the pandemic. Results The results show that only a small portion of social media users (166/946, 18%) chose to disclose and discuss their COVID-19 diagnosis while infected with the virus. However, among those who did, an overwhelming majority (206/251, 82%) said that doing so helped them feel more connected and supported while infected with the virus. A larger percentage of the 946 respondents (n=319, 34%) engaged in peer-to-peer information seeking while infected with COVID-19. Among those who did, a large majority (301/319, 94%) said that doing so was “helpful,” but more than one-third (115/319, 36%) said that reading about other people’s experiences made them “more worried” about having COVID-19, while 33% (108/319) said that it made them “less worried.” Illness severity and political affiliation were significant predictors of both information sharing and seeking. Conclusions The findings suggest that the benefits (and risks) associated with online health communities are germane to patients with acute illnesses such as COVID-19. It is recommended that public health officials and health care providers take a proactive approach to cultivating professionally moderated forums supporting peer-to-peer engagement during future outbreaks of COVID-19 and other acute illnesses in order to improve patient outcomes and promote social support and connectedness among infected patients.

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Come for Information, Stay for Support: Harnessing the Power of Online Health Communities for Social Connectedness during the COVID-19 Pandemic

Cited by 9 publications

References 28 publications

Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

CORR Insights®: Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients’ Experiences: A Thematic Analysis

Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults

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