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. 2021 Jan 14;16(1):e0245483. doi: 10.1371/journal.pone.0245483

#Caremongering: A community-led social movement to address health and social needs during COVID-19

Hsien Seow 1,*,#, Kayla McMillan 1,#, Margaret Civak 1,#, Daryl Bainbridge 1,#, Alison van der Wal 2,#, Christa Haanstra 3,‡, Jodeme Goldhar 4,‡, Samantha Winemaker 5,‡
Editor: Holly Seale6
PMCID: PMC7808573  PMID: 33444420

Abstract

Background

To combat social distancing and stay-at-home restrictions due to COVID-19, Canadian communities began a Facebook social media movement, #Caremongering, to support vulnerable individuals in their communities. Little research has examined the spread and use of #Caremongering to address community health and social needs.

Objectives

We examined the rate at which #Caremongering grew across Canada, the main ways the groups were used, and differences in use by membership size and activity.

Methods

We searched Facebook Groups using the term “Caremongering” combined with the names of the largest population centres in every province and territory in Canada. We extracted available Facebook analytics on all the groups found, restricted to public groups that operated in English. We further conducted a content analysis of themes from postings in 30 groups using purposive sampling. Posted content was qualitatively analyzed to determine consistent themes across the groups and between those with smaller and larger member numbers.

Results

The search of Facebook groups across 185 cities yielded 130 unique groups, including groups from all 13 provinces and territories in Canada. Total membership across all groups as of May 4, 2020 was 194,879. The vast majority were formed within days of the global pandemic announcement, two months prior. There were four major themes identified: personal protective equipment, offer, need, and information. Few differences were found between how large and small groups were being used.

Conclusions

The #Caremongering Facebook groups spread across the entire nation in a matter of days, engaging hundreds of thousands of Canadians. Social media appears to be a useful tool for spreading community-led solutions to address health and social needs.

Introduction

The World Health Organization’s Ottawa Charter for Health Promotion identifies five strategies for improving health [1, 2]. One of those strategies is strengthening community action, which focuses on empowering communities to set priorities, make decisions, and implement plans to improve health and well-being. This strategy is consistent with other health and social science research such as community development and compassionate communities [3–5]. Community-led solutions have long been an important means to address interconnected health and social issues, such as homelessness and food insecurity [6, 7]. In recent years, social media has become a powerful tool to advance health promotion and communication. Social media can communicate information in a way that spreads quickly and does not require government bureaucracy or financial resources, making it useful for supporting community-led public health approaches [8–10]. However, systematic reviews have concluded that more research is needed to understand social media’s reach, efficiency, and impact on the health of a population [11–13].

The COVID-19 global pandemic presents an unprecedented threat to population and individual health. Governments have implemented policies to stop the spread of infection, such as border closures and travel restrictions [14, 15]. Hospitals responded to the pandemic by implementing wide use of protective equipment (PPE), heightened safety procedures, and securing key materials (e.g. ventilators) [16]. In the community however, patient health has been greatly disrupted by self-isolation, social distancing and stay-at-home restrictions. These widespread measures, while necessary to flatten the curve of infection and spread, have exacerbated existing health and social needs in the community, particularly those living with a chronic illness and their families [16–19]. These needs include challenges with social isolation, depressed mood and anxiety, access to primary care and community-based services, financial and food insecurity, and support with activities of daily living (e.g. getting groceries, managing medications, etc.). The pandemic also created new issues for individuals in caring for those with COVID-19 and taking precautions to avoid catching the virus.

COVID-19 presents a unique opportunity to study the role of social media on community-led health initiatives. In Canada, communities began a social media movement, #Caremongering. Within days of the World Health Organization’s declaration of the global pandemic on March 11, 2020, the first #Caremongering Facebook Group started in Eastern Canada and inspired communities across Canada to form their own groups [20, 21]. A Facebook Group is a page created by a Facebook member on a topic, intended for other members to join and share this common interest. Members of the group can post content (text, videos, images, etc.) or comment/respond/add to content posted by others [22]. Local #Caremongering Facebook groups formed to help provide vulnerable individuals in their communities with access to food, services, information, and other necessities. Member volunteers deliver supplies and food, donate goods, run errands, or do chores for others, all while maintaining social distancing. The campaign name was inspired by transforming the negative term “scaremongering,” to a positive one of “caremongering.” This particular social movement might serve as a useful example of community-led solutions for health care, but its spread and use has not been investigated. This study aims to: 1) examine how far the movement spread and how many Canadians participated in #Caremongering across Canada; 2) characterize how communities used the Facebook groups; and 3) examine differences between big and small-sized community Facebook groups.

Methods

Search strategy

We conducted a comprehensive search and examination of #Caremongering Facebook groups in Canada. During the week of May 4th we searched Facebook using the social networking service’s built-in search engine. We searched Facebook Groups using the term “caremongering” combined with the name of one of the population centres in Canada, as defined by Statistics Canada [23]. We included the top 50 (by population) population centres in ON, the top 25 in BC, and 10 each in the remaining provinces and territories (total of 185 Canadian cities). This approach ensured that the largest communities, and those most likely to have caremongering groups, across the country were included. We restricted our search to public groups that operated in English.

Data extraction and analysis

Two analysts (KM and AV) divided the selected population centres and extracted available Facebook analytics on all the groups found: creation date, number of members, average posts per day, change in members past 30 days, change in number of posts past 30 days. We took a purposive sample of the caremongering groups identified for content analysis, as follows: 1) 15 groups with the largest membership, 2) 15 groups with the highest relative posting activity, calculated as the rate of average daily posts per 100 members. The latter tended to be smaller groups (< 600 members) in more rural areas, providing us with a diversity of groups to analyse.

Three analysts (KM, AV, and DB) conducted a content analysis of the 30 groups [24]. Content analysis is a relevant method for making valid inferences as to the manifest content or meaning of text data, including for understanding the contextual use of electronic media. Each analyst read through the group content to determine 1) the description and purpose of the group, 2) group rules, regulations and organization, and, 3) the nature or concept of the content and responses posted.

The analysts took notes and screenshots from each Facebook group examined. The approach to content analysis and classification of posts was based on prior social media research [25, 26]. Each analyst read the posts over the past month of 10 groups (5 large membership and 5 high activity groups each). Specifically, we used a conceptual analysis approach, where the analyst reviewed the text of each post and applied a code through a process of selective reduction summarizing the post as a word or phrase [27]. The analysts proceeded through consecutive posts (100 minimum per group) until they identified no new codes. A constant comparison technique was employed to generate key themes inductively from the codes, first within each Facebook group, and then across all 30 Facebook groups [28]. Throughout data collection the analysts met regularly to compare and discuss their content codes. Once all the selected groups had been examined, the analysts deliberated on consistent themes across the groups and differences between large and high activity (smaller) groups. These preliminary themes were discussed among the authors and finalized. We collected follow-up analytics the week of June 9th from the identified groups. Ethical approval for this study was obtained from the Hamilton Integrated Research Ethics Board (11129). The need for consent to analyze Facebook posts from members of the groups was waived given that the content was publicly available.

Results

The search of Facebook groups across 185 cities yielded 130 unique groups, including groups from all 13 provinces and territories across Canada. In the group descriptions, they uniformly described themselves as grassroots networks to assist vulnerable individuals in their communities by offering and seeking support, sharing reliable information, and spreading goodwill in the local community during the COVID-19 pandemic. Many of the groups encouraged members to use prescribed hashtags to indicate the nature of their post, e.g., #ISO (in search of). Group rules varied slightly–though a universally stipulated rule was zero tolerance for posts exhibiting bigotry, scaremongering, or spreading false information. Local residence was not a requirement in most groups given that members may live elsewhere but have joined to help friends or family in that group’s geography. Total membership across all 130 groups as of May 4th 2020 was 194,879. The vast majority (96%) were formed within days of the global pandemic announcement. Fig 1 shows the rapid growth in total members among the 130 Canadian groups from date of group creation (week of March 12 for most groups) to a month later (week of April 12). Membership stablized from this data collection time to subsequent (weeks of May 4 and June 9) and final periods (September 3). As of May, a third (34%) of the groups had over 1000 members, while 14% had less than 100 members. Twenty percent of the groups had at least 20 posts per day on average over the month.

Fig 1. Facebook membership for 130 Caremongering Facebook groups over time.

Fig 1

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Analysis of selected groups

Table 1 shows data from the 30 selected groups. In our sub-analysis, the largest group (Toronto, ON) had 24,822 members; the group had an average of 310 posts per day (average of 1.25 posts/100 members). The smallest group (Woodstock, ON) had 116 members; the group had an average of 3 posts per day (average of 2.59 posts/100 members). The most active group (Amherstburg, ON) had 2,622 members; that group had an average of 170 posts per day (average of 6.48 posts/100 members).

Table 1. Descriptive information regarding membership and activity of 30 selected #Caremongering Facebook groups, May 2020.

City, Province Population Size # of Members Average Posts per Day Activity/100 members†
Toronto, ON 5,429,524 24,822 310 1.25
Kitchener, ON 470,015 8,745 80 0.91
Hamilton, ON 693,645 6,997 80 1.14
Ottawa/Gatineau, ON 989,567 6,840 40 0.58
Saskatoon A, SK 245,181 6,810 130 1.91
Burlington, ON 183,315 6,287 140 2.23
Annapolis Valley, NS* 12,088 5,998 210 3.50
Kingston, ON 117,660 5,232 60 1.15
Guelph, ON* 132,397 5,229 280 5.35
Saskatoon B, SK 245,181 4,671 50 1.07
Niagara Region, ON 229,246 4,304 6 0.14
Kamloops, BC 78,026 4,020 120 0.25
Swift Current A, SK 16,022 3,858 50 1.30
Charlottetown, PEI 44,739 3,642 9 0.25
London, ON* 383,437 3,534 110 3.11
Orangeville, ON* 30,734 3,501 110 3.14
Windsor, ON 287,069 3,213 40 1.24
Cape Breton, NS 17,556 3,208 20 0.62
Fredericton, NB 59,405 3,183 30 0.94
Amherstburg, ON* 13,910 2,622 170 6.48
Oshawa, ON* 308,875 1,774 50 2.82
Stratford, ON* 31,053 581 30 5.16
St. Thomas, ON 41,813 421 10 2.38
Collingwood, ON 20,102 409 10 2.44
Midland, ON 24,353 359 10 2.79
Swift Current B, SK 16,022 357 10 2.80
Montreal, QB* 1,704,694 272 10 3.68
Peggy’s Cove, NS* 30 223 9 4.04
York Region, ON* 1,109,909 183 7 3.83
Woodstock, ON 40,404 116 3 2.59
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*denotes Facebook groups selected based on highest activity

†Activity rate = average daily posts/number of members x 100).

“Small” facebook groups in our sample were considered to be those with less than 600 members.

How members used the Caremongering Facebook groups

The research team identified 4 major themes within the posts of the 30 groups (Table 2). The themes coincided along the broad categories of hashtags (#) used, regardless of whether the use of hashtags was an explicit rule in the Facebook group. A hashtag is common social media tool used to organize posts and content. The most common hashtags found by the research team were: #offer, #iso (in search of), #discussion and #info.

Table 2. Main themes and hashtag use in Caremongering Facebook groups.

Theme Category Associated Hashtags
1.Personal protective equipment (PPE) e.g. PPE offers, instructions on making masks, sale and delivery of masks, hand sanitizer, and disinfectant wipes. #resources
#offer
2. Offer Offering Materials #offer
e.g. food, clothes, and recreational activities. #donate
Offering Services #offer
e.g. pick-up of essential materials, such as prescriptions, drop off of groceries, etc. #communitycare
3. Need Need for materials #iso
e.g. food, pantry supplies, clothes, air conditioners, etc. #help
Need for Services #need
e.g. assistance with pets, taxes, delivery, transportation to medical appointments, etc.
4. Information Community Information #shops
e.g. news updates, store closures, restaurant take-out hours, etc. #thingstodo
COVID General Info #municipalchanges
e.g. cases, test centers, outbreaks, etc. #news
Positive/Inspirational #mentalhealth
e.g. good news stories, acts of kindness, etc. #covidnews
Discussion/ Advice #municipalchanges
e.g. employment insurance payments, activities and schedules for home schooling children, etc. #smile
#goodbusiness
#sharethelove
#thankyou
#discussion
#resources
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Theme 1: PPE

Personal Protective Equipment (PPE) was a recurring theme among all the Facebook groups analyzed. PPE includes masks, (both reusable and disposable) and equipment and supplies for antibacterial cleaning and disinfection. Some Facebook groups made making homemade masks a central purpose, which then expanded to delivering masks to Long Term Care homes in desperate need of equipment for healthcare providers. This theme included selling or donating PPE, the organization of members sewing masks as a collective, and offering supplies for and information on mask making, including sharing recommendations from the Centres for Disease Control on fabric selection, adding filters, and the use of “ear savers”. Example: “With Trudeau suggesting masks today I have been busy sewing more masks for those who need them.”

Theme 2: Offer

The second major theme was “offer.” This encompassed individuals or groups offering something for those in need. This major theme had multiple manifestations across the 30 groups, however the research team identified two main categories: offers of material resources or offering of services. Offering of material resources could include offering food, pantry supplies (e.g. for baking), clothing, cooked food, recreational activity (including puzzles or activities for children who were not in school). Example: “I made some more vegan stuffing and have extra—direct message me.” Offering of services ranged from offering of picking up prescriptions and groceries, to offering assistance with resume building for those who had lost their jobs. Example: “Student can drive those requiring assistance to groceries, appointments, etc.” Many groups posted guidelines for offering grocery delivery or prescription pick up to those who were interested in doing so, in terms of money exchanging hands and keeping the safety of others in mind.

Theme 3: Need

The third major theme identified was individuals or groups posting about needs. If the group used hashtags, this was often denoted as #iso (in search of), #need or #help. These posts also fell into two main categories: need for services or need for material goods. Some of the services requested included grocery delivery or pick up or assisting the elderly with tax preparation. Example: “#ISO tax assistance for two elderly people.” Some of the goods people needed included food and groceries, and household cleaning supplies. Example: “#ISO Is anyone able to donate some basic items (frozen fruit etc.)? We are still struggling through this pandemic.”

Theme 4: Information

The fourth major theme was that of requested or provided information. This theme contained a wide variety of content, which the research team compiled into four categories:

  1. Community Information: This included information about local park closures, information about businesses that are still open and local services that are helping people. Example: “Does anyone know any groomers that are still taking dogs?”

  2. COVID Information: This included information about COVID-19 cases in an area, hospital information and guidelines about getting a COVID-19 test. Example: “N.B. COVID-19 roundup: Province expands testing protocols.”

  3. Positive/ Inspiration: This category included positive messaging for front line workers, memes or jokes or acknowledging the charitable efforts of individuals, organizations, and businesses contributing to local communities. Example: “Public health called today to give me clearance. This past few weeks has taught me so many lessons.”

  4. Discussion/ Advice: This category included advice about the Canada Emergency Response Benefit (CERB), Employment Insurance related questions and general advice about navigating COVID-19. Example: “How many days for EI (employment insurance) payments to come through?”

Small vs large groups

Our analysis of posts in the 30 groups revealed there were not major differences in themes between how the 21 large groups and 9 small groups were being used. Regardless of group membership size, they were able to create a feeling of a smaller tightly-knit community within larger geographic areas. For instance, smaller groups posted about delivering home-cooked foods to other. Similar offers and connections were present in large groups, although posting members would stipulate neighborhoods or intersections, for example, “X available, located at King and Main St.” Large groups tended to have more posts per day, thus had more variety of content. The themes we identified were consistent in groups across provinces.

Discussion

Our study of the #Caremongering Facebook groups found that the volunteer social media movement spread to at least 130 communities—both big and small—engaging over 190,000 Canadians within days of the COVID-19 emergency declaration. These groups spread to every province and territory across Canada. Caremongering groups share a common purpose in providing an online platform for sharing of resources to individuals in their communities and the posting of local and national information related to the pandemic. The size of both the groups and the communities varied greatly, yet the themes were consistently around PPE, offers for things, request for things, and information sharing. The exponential and rapid growth of these networks demonstrates the reach and efficiency of using social media to develop and implement community-led solutions virtually, which was especially beneficial considering the widespread stay-at-home and social distancing orders of the pandemic.

Our results showed that #Caremongering groups provided direct health information (e.g. announcements about public health safety and testing sites), as well as addressed some broader social needs (e.g., unemployment benefits, food bank donations, etc.). There are some parallels between the #Caremongering social media intervention and other effective health promotion strategies, for instance the Australian response to HIV/AIDS epidemic in the 1980s. Specifically, grassroots and informal community mobilization and advocacy were critical to improving care, but also enhancing access to social and health prevention resources, which were largely responsible for the decline in HIV incidence in Australia [29–31]. Unfortunately, more recent systematic reviews on the specific role of social media on health issues are generally narrow in their research focus and outcomes, such as the ability of social media to promote HIV testing and medication adherence or recruit subjects to participate in smoking cessation programs [32, 33]. Thus, existing evidence is generally limited in addressing the multifaceted impacts of social media, such as social needs, community mobilization, or government response.

To explore whether #Caremongering is a useful health promotion tool to strengthen community action, we refer back to the World Health Organization criteria: [2] it states effective health promotion strategies must fulfill three basic prerequisites: Advocate, Enable and Mediate [34]. “Advocate” is the ability to promote favorable conditions through advocacy for health. “Enable” relates to ensuring equal opportunities and resources to allow everyone to achieve their fullest health potential. “Mediate” is the coordination of action to promote health by multiple sectors, not only health. #Caremongering allowed participants to advocate for and request supports and services they needed easily, often by using #need or #iso on the group. #Caremongering was also created to enable health equity and support vulnerable individuals in local communities. Finally, it served to mediate multiple sectors, diverse individuals and businesses in a geographic community to work together toward a common goal. While the effectiveness of #Caremongering itself as a health promotion tool requires more research beyond this initial study, it appears social media has promising potential to greatly support health promotion, including implementing activities that address physical, mental, and social well-being.

Our study has other limitations. Our search was limited to larger population areas and to English language or bilingual groups, and therefore, our findings may not be representative of remote, new immigrant, or French language groups. We examined changes in group membership over time but not the level of activity or content of posting, which may have varied since data collection. Almost all 130 groups examined were still active by the September period, however members may have retained their membership even if they were not longer active in the group. Our content analysis represents a snapshot of 30 groups that may not fully represent the overall content posted among all the caremongering groups we identified; however, we believe our sampling approach feasibly captured group diversity. Further research is required to understand the impact of the support provided on individual’s quality-of-life and other health outcomes, as well as how these groups help specific vulnerable populations (e.g. older adults, homeless, etc.). We also did not assess the sustainably of this movement, which rests upon the continued activity of site moderators and members.

In conclusion, our study showed that the #Caremongering social media movement quickly mobilized and engaged tens of thousands of people within a few days to offer support to others, even within small communities. Convening for a shared purpose over social media is a powerful means by which communities can address complex problems that cannot be resolved without shared responsibility with individual citizens and joint action. Social movements, fueled by social media, can be an important public health tool to support the health of vulnerable populations in the community.

Supporting information

S1 Table. Caremongering group data.

(DOCX)

Click here for additional data file. (40.9KB, docx)

Data Availability

All relevant data are within the paper and its Supporting Information files.

Funding Statement

This work was funded by the Labarge Centre for Mobility in Aging COVID-19 Grant. HS received this funding. https://mira.mcmaster.ca/research/research-centre/centre-for-mobility The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Decision Letter 0

Holly Seale

30 Oct 2020

PONE-D-20-28663

#Caremongering: A community-led social movement to address health and social needs during COVID-19

PLOS ONE

Dear Dr. Seow,

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Reviewer #1: Partly

Reviewer #2: Yes

**********

2. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: I Don't Know

Reviewer #2: Yes

**********

3. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: No

Reviewer #2: Yes

**********

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5. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: Thank you for the opportunity to review this paper. It was clear and well written and does a good job of documenting how people interacted with a social movement at a certain point in time of the COVID-19 pandemic.

The only part of the paper that I was not convinced by was the methods. The search strategy and data collection section was clear but the method of the analysis was not. The author writes that they based their method on previous work but don’t explain what the methodology is and why it is appropriate for this work. I expected to see a citation of the methodology they followed here but was referred to (I assume) the author’s previous studies. I don’t think the reader expects to have to read other work from the author to understand how this study was done - it would be great to have the methods adequately explained in this section so that the paper can be assessed on its own merits.

Also on methods, the author reports that they analysed content in order to “determine 1) the description and purpose of the group, 2) group rules, regulations and organization, and, 3) the nature of the content posted, as well as responses to posts.” They only report on the third aspect of this. It could be that the first point was to determine eligibility (useful to know if there were things other than language that would rule a group in/out). The second is interesting – did they all have the same rules? Were there different rules for paid and unpaid assistance etc? What sorts of things would make a person ineligible for the group? Did they have to live locally etc? This may be beyond scope! But I wondered all of these things as I was reading, because I had anticipated they would be reported as signposted in the second to last paragraph of the methods section.

Finally, on methods, it was not clear to me what the following sentence meant, particularly the first part: “The topic of each post reviewed was coded, proceeding through subsequent posts (100 minimum per group) until no new codes emerged.” Can you rewrite this so that is it clearer?

Other things I wondered and expected to find as I read the paper – did activity levels stay the same over time? Membership was reported at different points between March and Sept. What time period did the ‘posts per day’ reflect? Membership and activity aren’t the same – I would imagine activity would have waned over time as people became more accustomed to living in a pandemic situation, and this seems relevant to your study given that you gathered data at different points. Membership might have remained stable because people often don't bother to leave groups they are not actively engaged with. Can you report on this?

While I completely understand not having the capacity to analyse groups conducted in languages other than English, it is probably a limitation also in that it may have missed groups of newer migrants, who might have had different needs from other communities. This could be reported as a limitation.

Finally, I wasn’t convinced by the argument in the conclusion that the caremongering groups are health promotion tools. They might be but the claim seemed to come from nowhere and did not add to the paper. The paper seems a useful description of community rallying around a certain cause at a certain point in time. To make it more needs further analysis and argument I think.

Note that while I said all the data aren’t available (per the compulsory question) I do not consider that to be an issue. It can be a problem, reviewing qualitative work in systems set up for quantitative assessment. The data are not required I don’t believe, and it is difficult to imagine how they could ethically be retained given that they are identifiers. So this is more a note for the editor.

Reviewer #2: This study provides a descriptive account of Facebook-hosted online community support hubs that emerged across Canada in response to COVID-19 lockdowns. The authors describe the phenomenon and discuss whether the activities these hubs foster meet the definition of ‘health promotion’, concluding that they do.

Study methods are well described, and I found questions that had about these (impacts of English only; underrepresentation of remote populations; and the ‘snapshot’ approach) were appropriately addressed in the limitations section.

I note that there are no page or line numbers on the manuscript, which does make it harder to identify where revisions are recommended.

I have a number of recommendations to make, which I will list below.

1. Please include a reference for ‘content analysis’ so that readers can see how your approach to data analysis is informed. Providing a brief description of why you chose this approach would also be welcome.

2. Avoid using the word ‘emerged’ regarding themes, as this term underestimates the role of the researcher in the identification of themes. ‘We identified’ is a good substitute.

3. Typo: ‘codese’

4. In the results, the phrases ‘members who posted 310 times per day’ and ‘170 time per day’ should be rewritten to make ti clear that these were the total number of posts on a day, not the average contribution of each member of the hub.

5. Figure 1 should be ‘table 1’

6. Discussion: the sentence beginning ‘whereas’ needs revision (it currently reads as part of the previous sentence, into which a full stop has been interpolated to make the sentences shorter).

7. Currently, the authors reference social media interventions on smoking cessation, breast cancer and HIV, and make the comment that #Caremongering is not focused on a siloed health issue, but on the ‘existing health and social needs in the community during an unprecedented global pandemic’. The reader is left to assume that these other social media interventions are based narrowly on health issues, but the reference for these are systematic reviews of – narrowly defined health issues! I think there is a real opportunity missed here to make some comparisons between #Caremongering and the community responses to HIV, which is far richer than a systematic review on specific topics on social media can capture. Consider some of these sources: Brown, G., et al., Mobilisation, politics, investment and constant adaptation: lessons from the Australian health-promotion response to HIV. Health Promotion Journal of Australia, 2014. 25(1): p. 35-41. https://theinstituteofmany.org/ Plummer D, Irwin L (2006) Grassroots activities, national initiatives, and HIV prevention: clues to explain Australia’s dramatic early success in controlling the HIV epidemic. Int J STD AIDS 17, 787–93. Grant, M.P., et al., Communal responsibility: a history of health collectives in Australia. Internal Medicine Journal, 2019. 49(9): p. 1177-1180. If this is too complex a task , the authors should revise their comments specifically about the narrow focus of HIV social media to reflect how the way that research counts social media (ie by focusing narrowly) may obfuscate anything that occurs outside a narrow lens.

**********

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Reviewer #1: No

Reviewer #2: Yes: Bridget Haire

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PLoS One. 2021 Jan 14;16(1):e0245483. doi: 10.1371/journal.pone.0245483.r002

Author response to Decision Letter 0

1 Dec 2020

We wish to thank the editors and reviewers for their careful consideration of this manuscript. We agreed with the reviewers’ remarks and have attempted to address all their questions and suggested revisions item-by-item as follows.

1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at

https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and

https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf

REPLY: This has been done. Correct PLOS One formatting and referencing applied.

p2. We note that you have indicated that consent was not obtained as no participants were involved in data collection. Please indicate whether your ethics committee waived the requirement to obtain consent from participants involved in the study (i.e. those who you analysed the posts of).

REPLY: We have written in the methods an explicit statement saying: “The need for consent to analyze Facebook posts from members of the groups was waived given that the content was publicly available.”

p3. Your ethics statement should only appear in the Methods section of your manuscript. If your ethics statement is written in any section besides the Methods, please delete it from any other section.

REPLY: This has been done.

Reviewer's Responses to Questions

Reviewer #1:

Thank you for the opportunity to review this paper. It was clear and well written and does a good job of documenting how people interacted with a social movement at a certain point in time of the COVID-19 pandemic.

The only part of the paper that I was not convinced by was the methods. The search strategy and data collection section was clear but the method of the analysis was not. The author writes that they based their method on previous work but don’t explain what the methodology is and why it is appropriate for this work. I expected to see a citation of the methodology they followed here but was referred to (I assume) the author’s previous studies. I don’t think the reader expects to have to read other work from the author to understand how this study was done - it would be great to have the methods adequately explained in this section so that the paper can be assessed on its own merits.

REPLY: Thank you for this comment. Consistent with the other reviewer’s comments, we have elaborated further on our qualitative methods in the following ways:

-We have added a citation for “content analysis” (Krippendorff, 2018)

-We have added a statement of why we chose this approach: “Content analysis is a relevant method for making valid inferences as to the manifest content or meaning of text data, including for understanding the contextual use of electronic media.”

-We have also specified the type of content analysis we used, i.e. conceptual analysis, and included a reference: “Specifically, we used a conceptual analysis approach, where the analyst reviewed the text of each post and applied a code through a process of selective reduction summarizing the post as a word or phrase” (Wilson, 2016).

References:

• Krippendorff K. Content analysis: An introduction to its methodology: Sage publications; 2018.

• Wilson V. Research methods: Content analysis. Evidence Based Library and Information Practice 2016, 11(1 (S)):41-43.

Also on methods, the author reports that they analysed content in order to “determine 1) the description and purpose of the group, 2) group rules, regulations and organization, and, 3) the nature of the content posted, as well as responses to posts.” They only report on the third aspect of this. It could be that the first point was to determine eligibility (useful to know if there were things other than language that would rule a group in/out). The second is interesting – did they all have the same rules? Were there different rules for paid and unpaid assistance etc? What sorts of things would make a person ineligible for the group? Did they have to live locally etc? This may be beyond scope! But I wondered all of these things as I was reading, because I had anticipated they would be reported as signposted in the second to last paragraph of the methods section.

REPLY: As suggested, we added a statement about the first 2 steps in the Results:

“Many of the groups encouraged members to use prescribed hashtags to indicate the nature of their post, e.g., #ISO (in search of). Group rules varied slightly – though a universally stipulated rule was zero tolerance for posts exhibiting bigotry, scaremongering, or spreading false information. Local residence was not a requirement in most groups, given that members may live elsewhere but have joined to help friends or family in that group’s geography.” Note, none of the 30 sites we selected, where we did content analysis, were excluded.

Finally, on methods, it was not clear to me what the following sentence meant, particularly the first part: “The topic of each post reviewed was coded, proceeding through subsequent posts (100 minimum per group) until no new codes emerged.” Can you rewrite this so that is it clearer?

REPLY: We have revised this sentence and the preceding one. They now read as:

“Specifically, we used a conceptual analysis approach, where the analyst reviewed the text of each post and applied a code through a process of selective reduction summarizing the post as a word or phrase.[27] The analysts proceeded through consecutive posts (100 minimum per group) until they identified no new codes.”

Other things I wondered and expected to find as I read the paper – did activity levels stay the same over time? Membership was reported at different points between March and Sept. What time period did the ‘posts per day’ reflect? Membership and activity aren’t the same – I would imagine activity would have waned over time as people became more accustomed to living in a pandemic situation, and this seems relevant to your study given that you gathered data at different points. Membership might have remained stable because people often don't bother to leave groups they are not actively engaged with. Can you report on this?

REPLY: ‘Posts per day’ reflect Facebook analytics in April 2020, indicated in the Table 1 title.

Activity may have waned over time even if membership remained stable – we have added this as a study limitation. “Almost all 130 groups examined were still active by the September period, however members may have retained their membership even if they were not longer active in the group." Reporting on activity levels over time (i.e. posts/group over time) is beyond the scope of this study and listed as a limitation: “We examined changes in group membership over time but not the level of activity or content of posting, which may have varied since data collection.”

While I completely understand not having the capacity to analyse groups conducted in languages other than English, it is probably a limitation also in that it may have missed groups of newer migrants, who might have had different needs from other communities. This could be reported as a limitation.

REPLY: The exclusion of non-English groups and new immigrant groups is reported as a limitation.

Finally, I wasn’t convinced by the argument in the conclusion that the caremongering groups are health promotion tools. They might be but the claim seemed to come from nowhere and did not add to the paper. The paper seems a useful description of community rallying around a certain cause at a certain point in time. To make it more needs further analysis and argument I think.

REPLY: We have changed the topic sentence to better link Caremongering to our introduction, which began with the WHO Charter for Health Promotion criteria: “To explore whether #Caremongering is a useful health promotion tool to strengthen community action, we refer back to the World Health Organization criteria: it states effective health promotion strategies must fulfill three basic prerequisites: Advocate, Enable and Mediate” We hope this make the linkage more clear. Second, we agree that our study does not definitively make the case of Caremongering as an effective health promotion tool/strategy. Therefore, we have softened the conclusion of this paragraph to speak of the potential of the broader topic of social media movements. It now reads: “While the effectiveness of #Caremongering itself as a health promotion tool requires more research beyond this initial study, it appears social media has promising potential to greatly support health promotion, including implementing activities that addressed physical, mental, and social well-being.”

Note that while I said all the data aren’t available (per the compulsory question) I do not consider that to be an issue. It can be a problem, reviewing qualitative work in systems set up for quantitative assessment. The data are not required I don’t believe, and it is difficult to imagine how they could ethically be retained given that they are identifiers. So this is more a note for the editor.

REPLY: Thank you for your comment.

Reviewer #2:

This study provides a descriptive account of Facebook-hosted online community support hubs that emerged across Canada in response to COVID-19 lockdowns. The authors describe the phenomenon and discuss whether the activities these hubs foster meet the definition of ‘health promotion’, concluding that they do.

Study methods are well described, and I found questions that had about these (impacts of English only; underrepresentation of remote populations; and the ‘snapshot’ approach) were appropriately addressed in the limitations section.

I note that there are no page or line numbers on the manuscript, which does make it harder to identify where revisions are recommended.

REPLY: We have added page numbers.

I have a number of recommendations to make, which I will list below.

1. Please include a reference for ‘content analysis’ so that readers can see how your approach to data analysis is informed. Providing a brief description of why you chose this approach would also be welcome.

REPLY: We have added a reference for ‘content analysis’ (Krippendorff , 2018) and added a statement of why we chose this approach: “Content analysis is a relevant method for making valid inferences as to the manifest content or meaning of text data, including for understanding the contextual use of electronic media.” As well, we specify the type of content analysis we used, i.e. conceptual analysis: “Specifically, we used a conceptual analysis approach, where the analyst reviewed the text of each post and applied a code through a process of selective reduction summarizing the post as a word or phrase” (Wilson, 2016).

References:

• Krippendorff K. Content analysis: An introduction to its methodology: Sage publications; 2018.

• Wilson V. Research methods: Content analysis. Evidence Based Library and Information Practice 2016, 11(1 (S)):41-43.

2. Avoid using the word ‘emerged’ regarding themes, as this term underestimates the role of the researcher in the identification of themes. ‘We identified’ is a good substitute.

REPLY: As suggested, we have changed ‘emerged’ to ‘we identified’.

3. Typo: ‘codese’

REPLY: Typo corrected to ‘codes’.

4. In the results, the phrases ‘members who posted 310 times per day’ and ‘170 time per day’ should be rewritten to make it clear that these were the total number of posts on a day, not the average contribution of each member of the hub.

REPLY: The sentences have been revised as: “…the largest group (Toronto, ON) had 24,822 members; the group had an average of 310 posts per day (average of 1.25 posts/100 members). The smallest group (Woodstock, ON) had 116 members; the group had an average of 3 posts per day (average of 2.59 posts/100 members.”

5. Figure 1 should be ‘table 1’

REPLY: Figure 1 is a line graph and therefore we have labeled it as a figure.

6. Discussion: the sentence beginning ‘whereas’ needs revision (it currently reads as part of the previous sentence, into which a full stop has been interpolated to make the sentences shorter).

REPLY: Sentences revised.

7. Currently, the authors reference social media interventions on smoking cessation, breast cancer and HIV, and make the comment that #Caremongering is not focused on a siloed health issue, but on the ‘existing health and social needs in the community during an unprecedented global pandemic’. The reader is left to assume that these other social media interventions are based narrowly on health issues, but the reference for these are systematic reviews of – narrowly defined health issues! I think there is a real opportunity missed here to make some comparisons between #Caremongering and the community responses to HIV, which is far richer than a systematic review on specific topics on social media can capture. Consider some of these sources:

• Brown, G., et al., Mobilisation, politics, investment and constant adaptation: lessons from the Australian health-promotion response to HIV. Health Promotion Journal of Australia, 2014. 25(1): p. 35-41. https://theinstituteofmany.org/ Plummer D, Irwin L (2006)

• Grassroots activities, national initiatives, and HIV prevention: clues to explain Australia’s dramatic early success in controlling the HIV epidemic. Int J STD AIDS 17, 787–93.

• Grant, M.P., et al., Communal responsibility: a history of health collectives in Australia. Internal Medicine Journal, 2019. 49(9): p. 1177-1180.

If this is too complex a task , the authors should revise their comments specifically about the narrow focus of HIV social media to reflect how the way that research counts social media (i.e. by focusing narrowly) may obfuscate anything that occurs outside a narrow lens.

REPLY: Thank you for this comment. We have read the suggested sources, and reconsidered the intent of this paragraph. As a result, we have made major revisions to this paragraph to incorporate the above points and references. It now reads:

“Our results showed that #Caremongering groups provided direct health information (e.g. announcements about public health safety and testing sites), as well as addressed some broader social needs (e.g., unemployment benefits, food bank donations, etc.). There are some parallels between the #Caremongering social media intervention and other effective health promotion strategies, for instance the Australian response to HIV/AIDS epidemic in the 1980s. Specifically, grassroots and informal community mobilization and advocacy were critical to improving care, but also enhancing access to social and health prevention resources, which were largely responsible for the decline in HIV incidence in Australia.(CITE) Unfortunately, more recent systematic reviews on the specific role of social media on health issues are generally narrow in their research focus and outcomes, such as the ability of social media to promote HIV testing and medication adherence or recruit subjects to participate in smoking cessation programs. (CITE) Thus, existing evidence is generally limited in addressing the multifaceted impacts of social media, such as social needs, community mobilization, or government response.”

Attachment

Submitted filename: Caremongering Reviewer comments Nov 16 2020-HYS.docx

Click here for additional data file. (26.4KB, docx)

Decision Letter 1

Holly Seale

4 Jan 2021

#Caremongering: A community-led social movement to address health and social needs during COVID-19

PONE-D-20-28663R1

Dear Dr. Seow,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org.

If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org.

Kind regards,

Holly Seale

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: All comments have been addressed

Reviewer #2: All comments have been addressed

**********

2. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: (No Response)

Reviewer #2: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: (No Response)

Reviewer #2: N/A

**********

4. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: (No Response)

Reviewer #2: Yes

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: (No Response)

Reviewer #2: Yes

**********

6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: (No Response)

Reviewer #2: Thanks for addressing my comments

000000000000000000000000000000000000000000000000000000000000000000

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: Yes: Jane Williams

Reviewer #2: Yes: Bridget Haire

Acceptance letter

Holly Seale

7 Jan 2021

PONE-D-20-28663R1

#Caremongering: A community-led social movement to address health and social needs during COVID-19

Dear Dr. Seow:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

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on behalf of

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    Supplementary Materials

    S1 Table. Caremongering group data.

    (DOCX)

    Click here for additional data file. (40.9KB, docx)
    Attachment

    Submitted filename: Caremongering Reviewer comments Nov 16 2020-HYS.docx

    Click here for additional data file. (26.4KB, docx)

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