Grassroots Mental Health Groups’ Use of Advocacy Strategies in Social Media Messaging

Mental Health Online Messaging and Advocacy Strategies

Research into how to mitigate stigma of mental health concerns in online and social media messaging has taken a different approach than the scholarship that focuses on stigma of mental health concerns in traditional media and interpersonal contexts. In traditional media, the focus is on the production of media messages for audiences, and their positive or negative representations, while the focus of online messages is concerned with how individuals seek out, create, or interact with mental health messaging online. This focus has typically included research into anonymous information seeking and social support. Less work has been done on what advocacy messages individuals may encounter or create online.

Scholars have also explored how disclosure and advocacy efforts in offline interpersonal communication can help with destigmatization efforts. For instance, Bril-Barniv and colleagues (2017) found that respondents elected to disclose serious mental health concerns with those in their interpersonal networks as a means of promoting social change, bringing hope to others, and fighting stigma. Moran and colleagues (2012) found that individuals working in peer-support positions within mental health organizations found the opportunity to support and advocate for others with mental health concerns empowering. Finally, Mancini (2019) found that individuals working in peer-support positions valued the opportunity to engage in advocacy activities at the interpersonal, team, organizational, and systemic levels. Given social media contains elements of both mass media and interpersonal communication, it is important to discern if these destigmatization and advocacy efforts are mirrored in social media content.

What we do know is online social support may lead individuals to organize and engage in advocacy against the stigma surrounding their health concern, but again, it is important to investigate what type of organizing and advocacy efforts individuals engage in, and what these efforts look like, when specifically dealing with mental health concerns. Rains and Keating (2011, 2015) found that disclosing health concerns online through blogging allowed participants to decrease disease-related uncertainty, and for individuals who posted on their blogs frequently, gave them a sense of well-being or purpose in life. Also, bloggers who had many readers comment on their posts felt a sense of community come through their online messaging and had perceptions of increased personal growth. Sometimes this personal growth and new-found purpose in life translated into helping others who may be experiencing similar concerns. This appeared to be the case especially when the health blogger did not perceive themselves as having supportive, strong-tie connections offline. Although studies into how individuals may progress to organizing and advocacy roles within mental health communication are limited, there has been some work done on the role of communication in advocacy work for the broader field of health communication, even though scholars such as Carlson et al. (2006) state that we have yet to clarify what we mean by constructs such as empowerment or advocacy.

Over the last 15 years, health communication scholars and scholars interested in social movements involving health issues (Brown et al., 2004; Laverack, 2013; Zoller, 2005) have attempted to explicate both health advocacy and health activism. Brown and colleagues (2004) proposed a typology of health social movements, including health access movements (seeking advancements in access to health care surrounding a specific illness or disability), embodied health movements (using the disability or illness experience to advocate for awareness, research, and expanded treatment options), and constituency-based health movements (which seek to mitigate health inequities among historically oppressed populations within a society). Although this typology is helpful in many regards, it focused more on the sociological aspects of social movements and less on health communication messaging or advocacy strategies that may be present within different types of movements.

Zoller (2005) built off of Brown et al.’s (2004) work when attempting to tease out the differences between health advocacy and health activism. According to Zoller’s (2005) article, health advocacy consists of the most common health promotion messaging, with a focus on education, and that health advocacy operates within existing systems of health communication, including the biomedical model. Health activism, on the contrary, involves a challenge to the existing order of health communication messaging and subverts the existing power structures within established systems, which are typically viewed as having negative outcomes, such as impeding health promotion (Zoller, 2005). Health activism involves attempts to change the status quo, including social norms, embedded practices, policies, and power relationships. Laverack (2013) agreed, stating that health advocacy is more conventional health messaging work, while activism goes beyond promotion work, and seeks to empower those with lived illness or disability experience.

While Zoller (2005) provided new ways of viewing health advocacy and activism, including theoretical approaches with both issue and process-foci, and a call for more attention to be paid to power structures and the political orientations of health movements, she also acknowledges that health advocacy and activism remain highly interrelated, and I would argue that this has only become more pronounced with developments in social media and online messaging opportunities over the last 15 years. Laverack (2013) concedes this point as well, stating that in today’s landscape, health advocacy organizations are likely to engage in both advocacy and activism as a dual-strategy approach and that it is best to view advocacy and activism messaging strategies as being on a continuum. This brings us to the work of Servaes and Malikhao (2010), who agree that the traditional perspective on advocacy is being replaced with a more interactive and integrative view (p. 42). Their article also provides a blueprint of what advocacy messaging should look like in a more interactive and integrative landscape.

Servaes and Malikhao (2010) describe how health communication professionals should change their communication interventions, overall, to be more focused on organizing and advocacy work, and more rooted in the idea that advocacy “be viewed in conjunction with social support and empowerment strategies” (p. 43), among audience members of the organization. Integral to the idea of using health communication to promote advocacy is the idea of bringing awareness to—and promoting support of—policy issues, as well as addressing social determinants of health and health inequalities, through citizen/community engagement in participatory communication about the health issue at hand. Put another way, Servaes and Malikhao (2010) take a very Freirean (2000) approach when calling upon health communication professionals, scholars, and decision makers to recognize their responsibility to the community they serve, and to “assist” (p. 48)—as opposed to direct or dictate organizing and advocacy strategies or efforts—committed individuals, organizations, and sectors working to resolve health issues. In mental health communication, this means that organizing and advocacy work must begin with the individuals experiencing mental health concerns, the related organizations they are members of, and the public sectors that serve them. A focus on what organization and advocacy online—where individuals come together in grassroots efforts to provide information and resources, advocate for funding and policy changes, and mitigate stigma of mental health concerns—looks like and how it is received requires further research.

Mental health advocacy in the United States took off in the 1970s, with the grassroots organizing of family members of individuals experiencing mental health concerns. To this day, the vast majority of mental health groups—even the largest groups, such as the National Alliance on Mental Illness—are grassroots organizations managed by volunteers with most of the work being done by local community chapters. According to the WHO (2003), these grassroots groups typically focus their missions on awareness-raising, information, education, training, mutual help, counseling, mediating, defending, and denouncing prejudicial attitudes and discriminatory behaviors.

The continuous development of digital and social media since the 1990s has allowed for existing groups to more easily share their messages and fulfill their missions. As mentioned previously in this article, the rise of digital and social media has also allowed for the formation of more groups, as some individuals move from simply looking for information or peer-support online, into organizing and advocating both online and offline. The WHO (2003) argues that non-governmental organizations advocating for mental health are the most likely stakeholders to affect positive changes for individuals experiencing mental health concerns, including increased awareness of mental health concerns and their treatments, reducing barriers to mental health treatment, reduction of public and self-stigma, and policy changes in both local and national government. Studying how grassroots mental health groups craft social media messages, how audiences receive those messages and what they do with the messages, and how these messages may incorporate advocacy strategies to mitigate mental health concerns is highly relevant. To that end, the following research questions are posed:

Method

To answer the research questions, I employed a case study design. Case study allows researchers to deepen understanding and associated meanings (Stake, 1995) of the research topic while exhaustively exploring a topic and researching alternative explanations (Yin, 2013). Case study design is fluid (Stake, 1995) and adaptive (Yin, 2013), allowing researchers to incorporate data analysis into the data collection process (Stake, 1995; Yin, 2013). All in all, a case study approach can present an interesting and compelling illustration of the research topic to practitioners and scholars, alike.

The groups included in this study are an international perinatal and postnatal mental health organization (IPP) and the state chapter of a national mental health organization (SNC). ¹ The audiences, goals, and approaches of the two identified cases vary. SNC focuses on a broad range of mental health information while IPP focuses on perinatal and postnatal mental health concerns in both women and men. IPP has a large international audience while SNC is regional. Both cases focus extensively on providing information, resources, and peer support to their audiences, but SNC also lists mental health advocacy in its mission statement. Nevertheless, IPP engages in substantial fund-raising endeavors and awareness events, so their organization is also involved in organizing and advocacy efforts.

The first type of data collected, after the two groups agreed to participate, involved social media posts from the Facebook and Twitter pages for each organization. The focus on Facebook and Twitter posts is well-justified by the general popularity of both platforms. According to the Pew Research Center, 68% of Americans use Facebook regularly, while 24% of Americans use Twitter regularly (A. Smith & Anderson, 2018). The posts were randomly sampled and collected during October 2018, and approximately 50 posts were collected from Facebook and Twitter for each organization, totaling approximately 200 posts collected for analysis. Posts were compiled in Word documents for analysis. Overall, social media post collection resulted in 44 single-spaced pages of posts, including visuals, from IPP, and 71 single-spaced pages of posts, including visuals, from SNC, for a total of 115 single-spaced pages of social media posts for analysis.

After institutional review board approval was given, the next two types of data collected were in-depth, semi-structured interviews with individuals involved in social media content creation for each group, and audience members (i.e., followers of the groups’ social media platforms) of each group who were willing to participate in this research. Content creators were initially contacted by phone and asked if they would be willing to participate, while interviewed audience members responded to social media recruitment scripts posted by the organizations on the researcher’s behalf. These interviews took place between the last half of October 2018 and the first half of December 2018. I interviewed five content creators (two from IPP and three from SNC) and 15 audience members (eight from IPP and seven from SNC). Interviews with content creators and audience members were audio-recorded and transcribed for analysis. There were no substantial differences in the length of interviews between content creators and audience members, and there were no substantial differences in length between members of the two different organizations. The average length of an interview with content creators was 40.5 minutes, with a range of 28 to 44 minutes. The average length of an interview with audience members was 39 minutes, with a range of 22 to 66 minutes. Overall, the average interview length was 40 minutes long. Once transcribed, interviews with content creators resulted in 77 single-spaced pages of data, and interviews with audience members resulted in 197 single-spaced pages, for a total of 254 pages of interview data for analysis. With the social media posts described above, a total data corpus of 369 single-spaced pages was analyzed.

Basic demographic information was collected after respondents provided informed consent. Interview respondents (N = 20) were all from the United States, as required by the institutional review board. For SNC content creators and audience members, all respondents were located within the state in which the chapter operated. For IPP content creators and audience members, respondents came from 10 different states and represented most geographical regions of the United States (i.e., New England, Atlantic Seaboard, Midwest, South, Southwest, and Western regions). Content creators reported being involved in content creation for their organization for an average of 3 years, with a range of time spent creating content from 4 months to 11 years. Audience members of the grassroots mental health organizations reported following the groups for an average of 4 years, with a range of 4 months to 21 years.

Respondents overwhelmingly reported their gender as woman (n = 19), with only one respondent identifying as a man. This makes sense when considering two major factors. First, IPP, by nature of the population it tries to reach, will draw more women to its audience than men, because perinatal and postnatal mental health concerns affect more women (1 in 7) than men (1 in 10). Second, women use social media extensively, more so than men, according to the 2018 Pew Research Center social media fact sheet.

Respondents also reported an average age of 40 years, with ages ranging from 22 to 60 years. The majority of respondents reported themselves as White (n = 18), with one respondent identifying as Black and one respondent as Asian American. Most respondents reported being straight when asked about their sexuality (n = 16), while four respondents described themselves as gay, lesbian, bisexual, or other. When asked about completed education, six respondents reported completing high school, while another six reported completing college, and eight respondents reported completing a graduate or professional program. Finally, respondents reported annual incomes between $20,000 and more than $160,000, with most respondents’ incomes (n = 13) falling into the $40,000 to $100,000 range. All in all, there were still opportunities for a multitude of perspectives and backgrounds from interview respondents, despite the homogeneity of respondents in gender and race.

Coding began as soon as social media posts were collected and interviews with organizational content producers and audience members were transcribed. Iterative axial and open coding was employed, within a constant comparative analysis approach (CCA). CCA was first introduced by Glaser and Strauss (2017) in grounded theory methodology and was further refined by Charmaz (2014). In addition, Fram (2013) advocated for CCA to be expanded beyond grounded theory methodology and described its applicability to a variety of interpretive methodological approaches. The CCA allows for researchers to begin analysis during the process of data collection, which means that unanticipated codes and themes can be explored further when collecting additional posts and in subsequent interviews.

I began analysis with multiple readings, first to thoroughly acquaint myself with the data, then to engage in multiple rounds of open and axial coding. Axial coding refers to second-level analysis of the data with specific concepts relevant to the theoretical underpinnings of the project in mind. The collected posts and interviews were coded for group message goals, perceived achievement or non-achievement of goals, and advocacy strategies. Audience member interviews were coded for audience message meanings, audience message understanding, and differences in perceived meaning and understanding between content creators and audience members. In addition, coding for emergent themes—or concepts that may not be anticipated by the research questions and theoretical approach—ensured that unanticipated results were captured. Emergent themes included discussions of diversity and inclusivity advocacy strategies. Once codes were captured through both axial and emergent coding, they were collapsed into larger constructs or themes, and again, are described in the project’s findings. During the final round of analysis, I focused my attention on comparing themes across both organizations (i.e., cross-case comparisons) to parse out similarities and differences in themes across the organizations. These similarities will be discussed in the analysis and conclusion. Incorporating axial and emergent coding techniques, as well as an iterative approach to open coding, worked to ensure validity in this qualitative project.

Findings

Before delving into the identified themes, I will first describe the organizational cases. IPP focuses on a subset of mental health concerns: perinatal and postnatal mental health concerns. Founded in the 1980s, IPP is a non-profit volunteer-based organization providing peer support, professional training for medical professionals, legislators and researchers, and public information about mental health concerns occurring during the pregnancy, postpartum, and post-loss periods. The organization has group coordinators in 50 states and over 35 countries. According to its mission statement, IPP is committed to awareness-raising, reducing stigma, and promoting quality mental health care for families. Their public tagline focuses on bringing individuals together, reducing feelings of guilt and blame, and recovery. The group also has a large annual fundraiser. Local IPP chapters across the United States and globally participate in this fundraiser, and these funds not only support the resources and educational materials developed by IPP, but also provide resources and support for underserved populations with perinatal mental health concerns (e.g., men and women of color).

SNC was founded in the 1970s, and the state chapter was one of the first state chapters to be established. There are now several additional affiliate regional chapters within the state, but most communication—including social media content—originates from the SNC chapter. The organization’s mission is focused on education, support, and advocacy for individuals with mental health concerns and their caregivers, with a focus on health equity for all individuals. Membership in SNC is exclusive to individuals with mental health diagnoses and family members supporting loved ones with mental health concerns. They focus their efforts on all mental health concerns, including anxiety, depression, and more serious diagnoses. Fundraising is important to SNC, and they pride themselves on raising enough funds to provide all resources, social support, and educational opportunities free of charge to anyone who wishes to participate. Advocacy is also very important to SNC; the organization is very involved and works closely with other non-profit organizations, state agencies, and the state legislature on a variety of policy issues. For example, SNC was heavily involved with providing testimony and information to state legislators and the state Medicaid office about the deleterious effects of adopting a preferred prescription drug list for individuals experiencing mental health concerns who utilize Medicaid (e.g., limiting payment for the newest antidepressants, such as serotonin-norepinephrine reuptake inhibitors (SNRIs), as well as atypical antipsychotic medications that appear to work for both psychosis and mood stabilization, but pose a significant cost to insurers).

While these two organizations may serve different users and employ varied approaches, they also have much in common. Ultimately, each group is concerned with sharing information, providing resources and peer support, advocating for better mental health outcomes, and reducing public stigma about mental health concerns. The differences and similarities between each group provide a rich data corpus for analysis.

Content creators attempted to engage audience members with a variety of advocacy posts. Although they may not have been aware of Servaes and Malikhao’s (2010) call for health communication to focus on advocacy work through participatory communication, and to focus such work on awareness, policy support, and addressing social determinants of health or health inequality, this is what content creators did. Advocacy posts focused on calling upon audience members to raise awareness through sharing stories and connecting with others outside of the organization, making their voices heard on policy initiatives and through voting in the midterm elections, fundraising for the organizations, and creating an inclusive environment for all types of audience members who may be experiencing a mental health concern. Both content creators and audience members stated that this was not the primary goal of the organizations studied (providing information, resources, and peer support was the primary goal), but there was still a substantial amount of organizing and advocacy messaging present. In particular, peer support provided a gateway into advocacy work for those audience members who were willing to volunteer for the organization and able to do such work. Before examining what content creators and audience members had to say about social media posts focused on advocacy, let’s first look at what, specifically, these posts entailed.

Discussion

The research questions posed in this article asked about messaging goals, strategies, and perceived effectiveness as it relates to the inclusion of advocacy strategies in grassroots mental health groups’ social media content. In addition, I sought to determine how audience members of these organizations understood and made meaning from social media messaging employing advocacy strategies. Through analysis of the collected posts, as well as interviews with content creators and audience members, I found substantial evidence of advocacy strategies being employed by the organizations under study. Although both content creators and audience members almost unanimously agreed that advocacy messaging was a secondary goal to sharing information and resources, as well as providing peer support, there were a variety of advocacy efforts present in posts, including raising awareness, supporting policy change, fundraising for the organization, and efforts toward more inclusive audiences. These strategies were closely aligned with what scholars, such as Servaes and Malikhao (2010), have recommended for health communication professionals, namely raising awareness, policy/initiative support, and working to address social determinants of health and health inequality. Peer support also played a significant role in willingness to engage in advocacy work for audience members, namely, through stories and connection, and especially when it concerned raising awareness and advocating for policy change. Overall, this analysis provides a foundation of constructs we can further explore when it comes to explicating what we mean by terms such as advocacy, as recommended by Carlson and colleagues (2006).

What is surprising is the number of audience members who were engaged in advocacy work (80%), as well as the numerous ways in which audience members engaged in this work. Advocacy, according to audience members, could be as simple as sharing stories and information about the organization to others in their online and offline social networks, or it could be as detailed as traveling to Washington, D.C., to speak with their U.S. Representatives during Advocacy Days in May. However, this does mirror previous research (Smith-Frigerio, 2019) that found users of a mental health website engaged in significant offline advocacy work, including writing books and creating a documentary. Although audience members who were willing to respond to interview requests may be simply more likely to engage in advocacy work for an unforeseen reason, given the differences in time spent following these organizations, plus the various stages of recovery or stabilization, there is reason to believe that audience members’ willingness to engage in such work is related to the peer-support and advocacy strategies employed in the organizations’ messaging. Audience members were highly cognizant of advocacy strategies, despite not being the primary goal of content creators’ messaging. Also, audience members augmented the organizations’ calls to engage in advocacy by encouraging each other to do such work and encouraging those in their social networks who were not audience members to engage in such work. All in all, although advocacy was a secondary messaging strategy to content creators and audience members alike, audience members amplified the call to engage in advocacy work to a degree not anticipated by other scholars in health communication research.

Finally, it was gratifying to see work toward the inclusion of audience members who have traditionally been excluded from or shied away from mental health communication efforts. IPP worked to include stories and awareness of the more complex struggles women of color and men face when seeking treatment for a perinatal or postnatal mental health concern in their messaging. SNC strove to drive home the point that mental health concerns can affect anyone, despite gender, race, or religious affiliation, and that their organization was there to assist every person who requested resources or support. Nevertheless, posts focused on inclusivity only constituted approximately 4% of total posts for both organizations, and I would recommend that mental health communication theorists and professionals work to investigate and include more opportunities to raise awareness about the social determinants of mental health as well as stigma and advocate for health equity among all groups within our society.