“You Are By No Means Alone”: A Netnographic Study of Self-Care Support in an Online Community for Older Adults

Abstract

Online peer-to-peer communities provide environments in which people with similar health concerns can interact and exchange information that can support self-care of long-term conditions. However, current theories have not adequately accounted for how self-care support is enacted in online communities. We conducted an observational netnography to identify and analyze posts in a publicly accessible online community (discussion forum boards) designed for older people. A Straussian grounded theory approach was used to examine 659 posts in health-related message boards. Self-care support involved the construction of three interrelated identities: (1) the support seeking self, in which members described problems and requested information; (2) the empathizing self, in which they described similar experiences and offered support; and (3) the influencing self, in which they provided information or advice. Online communities appear to be an important source of peer support and information and may be a cost-effective approach to supplement standard care.

Keywords

aged chronic illness and disease self-care self-management peer support social media online community netnography grounded theory

Introduction

An increasing number of older people have complex care and support needs, including informational and psychosocial needs that are frequently unmet in healthcare settings (Abdi et al., 2019; McGilton et al., 2018). A care need is a physical, psychological, social, or environment-related demand for help, care, or a service to address a problem that is experienced or expressed by the older person (Kalánková et al., 2021). Unmet care needs can pose a threat to the effective management of long-term conditions (LTCs), defined as a physical or mental health condition that is current that has lasted, or is expected to last, for 12 months or more (Goodman et al., 2013). Addressing unmet care needs is critical because of the increasing prevalence of LTCs and the growing number of older people (≥65 years) globally (Seah et al., 2018). Older adults increasingly use online environments to access support and information that might promote self-care of LTCs in daily life. Online communities designed specifically for older people are steadily growing in popularity as an increasing number of individuals seek support and information from peers on the Internet (Anderson & Perrin, 2017; Hunsaker & Hargatti, 2018). However, a clear understanding of the social practices that constitute self-care support, and how this support is enacted within older adults’ online peer-to-peer interactions, is currently lacking. Most previous studies have focused on specific LTCs (e.g., cancer and diabetes) and do not address online peer support for older people (Hossain et al., 2021). In this study, we carried out an observational netnography and grounded theory analysis to examine the social practices and processes involved in the negotiation of self-care support in a publicly accessible online community designed for older people.

Social Networks Supporting Self-Care

Self-care has been identified as a vital component in the prevention and management of LTCs (Riegel et al., 2017). Self-care is defined by the World Health Organization (WHO) as “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider” (WHO, 2019, p. x, emphasis added). Self-care support encompasses collaborative approaches directed at improving LTC outcomes with the involvement of healthcare professionals (HCPs), family, friends, and broader community ties (Matarese et al., 2018). Providing enhanced self-care support to people with LTCs (e.g., through structured education programs) can increase self-care activity, which is associated with improvements across a range of outcomes, including improved symptom management, clinical indicators, hospital admissions and, in some cases, event-free survival among patients with hypertension, cardiovascular disease, and diabetes (e.g., da Rocha et al., 2020; Jonkman et al., 2016; Riegel et al., 2017; Toukhsati et al., 2019). A recent review of theories of self-care and self-management of LTCs by community-dwelling older adults emphasized the importance of developing and mobilizing social and environmental resources, which can act as a facilitator or barrier to self-care and disease management (Lawless et al., 2021). In addition to partnerships with HCPs, a supportive environment, enabled by social support and relationships with family, peers, and significant others, is a defining attribute of effective self-care (Van de Velde et al., 2019). Informal and formal social resources consisting of networks of interconnected agents are central in supporting people with LTCs through the provision of information and other forms of instrumental and emotional support (Rogers et al., 2011; Vassilev et al., 2013). Access to peer-to-peer support via online communities is increasingly recognized as part of a broader network of care that can provide alternative ways of knowing and pathways to support (Allen et al., 2016, 2019).

Several established theories of self-care and self-management identify social networks and relationships as key sources of support enabling chronic disease management (Lawless et al., 2021); Thompson et al., 2022). For example, social learning theory (Bandura & Walters, 1977), which later developed into social cognitive theory, proposes that observational learning can have a powerful effect, and that the effect is greater when the learner perceives that the person demonstrating the behavior is like themselves. The middle-range theory of self-care of chronic illness (Riegel et al., 2012; 2019) states that friends and family have an important role in supporting patient engagement in self-care maintenance, self-care monitoring, and self-care management. Similarly, self-determination theory (Deci & Ryan, 2011) posits that experiences of relatedness or connection through interactions with important others such as peers are central to the internalization of new behaviors. More recently, Kingod’s (2020) study of diabetes online communities introduced the concept of “tinkering” (i.e., trialling unconventional strategies to seek health-related support), derived from actor-network theory, in the co-construction of self-care knowledge and behaviors by peers based on their personal experiences. Despite the range of available theories, many do not explicate the social interactional processes inherent in self-care support within online communities, which limits the use of appropriate theory to develop technology-based peer support interventions for older adults with LTCs.

Peer-To-Peer Health Communication in Older Adults’ Online Communities

Despite the recognized benefits of engaging in self-care activities, older adults might face barriers to self-care due to the additional vulnerability, frailty, and complexity that is often associated with aging (Garnett et al., 2018). Peer health refers to the interaction, informal learning, and support offered by peers with the same health condition or facing a similar situation (Fox, 2011; Litchman et al., 2018b). Peer support interventions can help overcome some of these barriers and facilitate self-care, resulting in improved health behaviors, while reducing the burden on informal carers and the healthcare system (Fisher et al., 2017; Thompson et al., 2022). Prior research has found that individuals tend to perceive others with similar characteristics as more trustworthy than government officials, professionals, and traditional (e.g., print and broadcast) media (Edelman Trust Barometer, 2017). Consequently, information exchanged between peers in online communities has the potential to influence others and, by extension, health behaviors (Willis, 2018). Online communities designed specifically for older users are growing in popularity (Lewis et al., 2018). This comes as more older adults have broadband access, use smartphones and other mobile devices, and actively increase their use of the Internet, particularly social media, at the fastest rate across all age groups (Ivan, 2019). Although research on the consequences of older people’s participation in online peer-to-peer communities is limited, existing research demonstrates that engagement with such communities can support offline relationships, for example, by potentially improving HCP–patient communication (Kingod et al., 2017). In addition, in the context of diabetes, past research has found that interactions between peers can provide informational and emotional support leading to improved knowledge, social support, and health indicators, such as glycemic levels (Litchman et al., 2018a). Although there has been increasing recognition of the online networks as a forum for support and engagement related to self-care, few previous studies have specifically examined the social mechanisms within these groups and how they might mediate LTC self-care support (Allen et al., 2016).

Recently, older adults’ use of online communities has received increased attention through research (e.g., Ivan, 2019; Nimrod, 2012; 2013). This work has highlighted the benefits of participation in terms of supporting resiliency, health literacy, psychological wellbeing, and self-empowerment (Kamalpour et al., 2020; Lewis et al., 2018; Litchman et al., 2018a, 2018b). For example, Nimrod’s (2013) survey of older adults’ online communities identified seven psychological benefits resulting from participation, with the most salient relating to joyfulness (positive emotion, relaxation, and self-assurance), stimulation (exposure to new ideas and activities), and companionship (an opportunity to make friends and for cooperation). Kamalpour et al. (2020) identified three potential benefits of older adults’ participation in online communities: (1) social support (e.g., informational support, sense of belonging, and behavioral assistance); (2) self-empowerment (e.g., self-efficacy, interdependency, and self-disclosure); and (3) wellbeing improvement (e.g., care access, stress relief, and loneliness reduction). These benefits were reported to support various resilience and protective factors, including independence, health status, and self-care.

Towards a Conceptual Framework

Previous research has produced frameworks to understand the role of peer-to-peer online communities in LTC self-care and self-management (e.g., Allen et al., 2016; Stockdale, 2008; Ziebland & Wyke, 2012). Stockdale (2008) drew on research on consumer needs and relationships to develop a conceptual framework to understand the needs of online community members. The framework conceptualizes peer-to-peer online communities as a shared space to address members’ expressed psychological (e.g., affiliation and belonging), social (e.g., network quality and norms of reciprocity), functional (e.g., access and convenience), and hedonic (e.g., entertainment and amusement) needs. In their meta-synthesis of qualitative studies, Allen et al. (2016) identified six themes related to LTC self-management support in online communities. These themes were synthesized into four key mechanisms for self-management support: (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-care support. These studies provide valuable insight into the characteristics and broad mechanisms of how self-care support is requested and given in online patient communities. However, most previous studies examined disease-specific discussion boards and were not specific to older adults’ online communities (Hossain et al., 2021). In addition, although previous studies have highlighted the potential advantages and intended and unintended consequences of participation in online communities, less is known about the social actions and processes within these groups that constitute and enable support related to self-care. Our study aimed to examine how publicly accessible online community for older adults was used as a context for peer engagement and support for LTC management and care. We additionally aimed to develop a conceptual framework for understanding the social practices that constitute self-care support in the community.

Method

We used an observational netnographic approach, as detailed in our study protocol (Lawless et al., 2020). Netnography is an online qualitative ethnographic methodology that has been used primarily in the observation of textual discourse (Kozinets, 2015). It has been successfully combined with qualitative approaches such as grounded theory to understand consumer attitudes, experiences, learning, and behaviors in online communities. Online social communities may be studied using participative (i.e., active) or non-participative (i.e., passive) observational approaches. The presence of the researcher can be counterproductive or inappropriate in studies of naturally occurring communication, such as when dealing with sensitive topics or illegal activities (Costello et al., 2017; Kozinets, 2015). We used an observational, non-participatory approach to minimize the impact of the researchers’ presence since we deemed a passive researcher role the most appropriate for interpreting data grounded in the context of naturally occurring social interaction.

Data Collection

Data collection began in April 2020 and was undertaken continuously until October 2020. This involved selecting and analyzing posts from one publicly accessible UK-based website and discussion forum explicitly targeting older adults. A description of the characteristics of the online discussion forum and website features and user features is provided in the study protocol (Lawless et al., 2020). To identify the website, we searched Google using the advanced search function for older adults’ online communities using combinations of keywords and Boolean operators. Websites were identified for inclusion in the study if (1) a stated objective of the website was to provide a platform for communication among older adults/seniors/retirees about health-related topics; (2) the website was in English and the materials posted by users were publicly available and users agreed that their information was non-confidential and non-proprietary; and (3) the website had been operating for ≥3 months and forums are in active use and updated daily. To identify relevant posts, the first author screened health-related discussion boards for the 200 most recently active forum threads (i.e., a series of posts related to a specific topic or question in a discussion board) and examined all messages posted from inception to October 2020. We selected a predetermined number of threads to ensure that the data were manageable and that we had the necessary amount of data for analysis by selecting the most recent messages posted to the forum (Smedley & Coulson, 2018). The number of threads was preselected based on available guidance for analyzing online discussion forums, as specified in our study protocol. This resulted in a total of 181 relevant forum threads being identified during the search, which included 659 individual posts written by 322 unique community members. This dataset included all posts and replies posted in the general health forum and forums for specific topics including diet and healthy eating, exercise, cancer, and diabetes. A record of the full URL was maintained for each thread so that they could be located again if it became necessary to refer to the webpage during the analysis or subsequent revisions. Field notes and personal reflections were recorded and maintained to increase trustworthiness as we continued to develop familiarity with the language and practices of the forum.

Data Analysis

Posts from each of the 181 threads were downloaded and data were managed using Microsoft Excel and NVivo 12 (QSR International). We used a Straussian grounded theory approach (Corbin & Strauss, 2008; Strauss & Corbin, 1998) based on a symbolic interactionism theoretical framework (Blumer, 1969). This approach was chosen as it enabled the exploration of theoretical relationships and the generation of an explanatory theory through the analysis of user responses, interactions, and processes in the online environment (Rieger, 2019). Meaning and concepts of action, interaction, and self/identity are central themes of symbolic interactionism that also feature in Corbin and Strauss’ version of grounded theory (Chamberlain-Salaun et al., 2013). Critical to the current study is that the concept of “self,” as conceptualized in symbolic interactionism, is not a definitive, stable entity, but rather something that arises through social interaction and reflexive processes. Identities are made relevant by constructing or ascribing membership across a range of potential social categories that make certain inferences available and are associated with different kinds of features or activities. Furthermore, identities might be associated with rights or entitlements to claim specific knowledge or experience. Symbolic interactionism builds on three key assumptions: (1) people strive and act according to what represents meaning for them; (2) meaning emerges through social interaction; and (3) meaning is managed and modified through interpretive processes (Handberg et al., 2015). These three assumptions provided the theoretical orientation to our analysis of social interaction at the micro-level to develop understandings of the various actions, interactions, and processes that underpinned peer-to-peer communication in the online community. Data analysis was conducted using the constant comparative method and the conditional/consequential matrix (Figure 1) to determine the causal relationships between the categories (Strauss & Corbin, 1998). The conditional/consequential matrix is a device predominantly used in Straussian grounded theory to draw connections between the macro and micro conditions affecting the phenomenon under study. The matrix was used to elucidate the process of peer-to-peer communication about health and self-care in the online community and construct a theory grounded in observation of online behavior.

Figure 1.

Conditional/consequential matrix, adapted from Strauss & Corbin (1998).

Use of the conditional/consequential matrix facilitated the identification of the phenomenon, causal conditions, context, intervening conditions, action strategies, and consequences to develop an emerging theory. The phenomenon was the central idea or schema recognizable by repeated patterns of actions and interactions relating to what participants did in response to a problem situation (e.g., accessing online peer support to address offline difficulties). The causal, contextual, and intervening conditions were the events or variables that shaped the occurrence of the phenomenon. Throughout this process, we referred to memos and theoretical notes containing the analysts’ reflections on emerging concepts and categories. Finally, quoted extracts (i.e., individual posts) illustrative of each of the main findings were selected. Forum posts were reproduced verbatim, retaining original spelling, grammatical errors, emoticons/emoji, and formatting. Usernames were replaced with unique alphanumeric identifiers (e.g., the third participant in the second thread of forum one was identified as F1-T2-P03) and these were applied to all associated data. Mindful of forum users’ privacy, respondent validation of the study findings was not sought (Lawless et al., 2020).

Data analysis involved three levels of coding: (1) open coding; (2) axial coding; and (3) selective coding. Straussian grounded theory informed the development of codes by providing the coding paradigm and analytical tools (i.e., conditional/consequential matrix) to identify conditions of the phenomenon, actions/interactions, and consequences. Specifically, we used the coding paradigm proposed by Strauss and Corbin (1990) to provide a theoretical framing to examine properties of higher-level concepts including identity/self. Following available guidance on analyzing Internet forums, we treated single postings as the unit of analysis (Holtz et al., 2012). We chose this unit of analysis because it enables conversational elements to be captured, where the sequential structure of posts mirrors “turn-taking” in naturally occurring face-to-face conversations (cf. Sacks, 1992). Extensive memo writing accompanied each stage of the analysis.

Two independent analysts undertook open coding to fragment the data and generate a flexible coding framework. This phase of the analysis was concerned with inductively identifying, naming, categorizing, and describing the concepts, phenomena, and properties of the data. Open coding generated fragmented data relating to both the health topics discussed (e.g., “experiencing sleeplessness”) and the social action(s) being performed (e.g., “requests for information”). Then, we conducted axial coding to restructure the fragmented data into a logical, coherent structure. This step involved exploring relationships between the concepts and categories identified during open coding through a combination of inductive and deductive techniques. For example, open codes “expressing gratitude,” “making sense of life events,” and “self-disclosure” were reconstructed into the axial code “sharing lived experiences.” Finally, we conducted selective coding to integrate the categories developed during axial coding into a single cohesive theory by relating the categories to the overarching core category (Strauss & Corbin, 1998). For example, axial codes “requesting information or advice” and “sharing lived experiences” were combined to form the category “the support seeking self.” Discrepancies in the coding process were resolved through discussion between the analysts and, if necessary, a third author. The following strategies were used to address trustworthiness criteria: prolonged engagement; thick description of the study context; reflexive memo writing; and acknowledging researcher biases (Maher et al., 2018).

Ethical Considerations and Informed Consent

Online communities are recognized as a valid focus for research because they are in the public domain. However, there is continuing debate regarding the ethical issues around using publicly accessible online discussions for research purposes (e.g., Stommel & de Rijk, 2021). Although the use of observational methods of studying public online communities is legitimate, the covert nature of data collection raises ethical concerns, with issues of privacy, confidentiality, agency, and informed consent being of particular concern (Dehkhoda et al., 2020; Zimmer, 2010). An individual might contribute to an online community expecting privacy and not expect to become a research participant (von Benzon, 2019). Unauthorized secondary use of user-generated material by the researcher could be considered a violation of privacy because it interferes with the user’s ability to control their personal information. This emphasis on vulnerability highlights the need to protect users via an ethical approach to online research. Nonetheless, others have argued that users have control over their public information through the privacy settings of most social media platforms including Facebook (Moreno et al., 2013). According to von Benzon (2019), a framing of online contributors that foregrounds their naivety and vulnerability is highly paternalistic. von Benzon (2019) draws on key examples from law and public opinion (e.g., in the UK, the Defamation Act of 2013) that recognize online contributors as competent and informed agents who are responsible for appropriate use of the Internet for self-expression.

Our data consisted of posts that were available to the public online community. The Flinders University Social and Behavioral Research Ethics Committee (project number 8559) provided ethical approval for this study. Following guidelines and ethical codes of conduct for web-based research (British Sociological Association, 2016; Taylor & Pagliari, 2017), the first author approached the website administrator via email and obtained permission in October 2019 to use their data, including any text (discussion forum posts and responses) for the project period. Because the identities of the forum users were unknown, we were unable to obtain informed consent from individual users to participate in the research. The research was also advertized and explained on the website and its associated Facebook and Twitter pages. The name of the website is not included in this article to protect the privacy of forum users. As an additional privacy measure, we removed all terms, images, and phrases that could identify forum users, carers, and/or their healthcare providers.

Results

Analysis of the 181 threads found that they often originated from various requests for support based on the problem description provided. Threads varied in length from one to 33 posts and the number of posts per user ranged from one to 29. Some threads were active for a few days, but in some cases additional contributions were identified months or years after the initial post. Table 1 shows the most frequently occurring topics discussed in the online forum based on our coding scheme.

Table 1.

Topics Discussed in the Online Forum (n = 659).

Topic	Sub-topics	Number of Posts, n (%)
Living with a long-term health condition	• Monitoring symptoms • Adhering to treatments • Taking medications • Coping with LTCs • Daily activities	131 (19.9)
Health system interactions	• Interactions with HCPs • Tests/diagnostics • Vaccinations • Telehealth/telecare • Accessing online information	108 (16.4)
Diet and eating	• Diet/dieting • Nutrition • Weight loss • Digestion	106 (16.1)
Exercise and fitness	• Exercise/fitness	69 (10.5)
Pain	• Pain (e.g., arthritis-related pain) • Headaches • Infections/wounds • Pain relief	41 (6.2)
Psychological functioning	• Anxiety • Depression • Stress	35 (5.3)
Hair and skin care	• Skin conditions • Hair loss • Caring for skin/hair	29 (4.4)
Sleeping well	• Insomnia/sleeplessness • Sleep remedies/sleep aids	28 (4.2)
Surgery	• Preparing for surgery • Complications with surgery	24 (3.6)
Sensation	• Sensation and perception (e.g., smell, taste, vision, hearing, and feet/hands)	23 (3.5)
Complementary and alternative medicine (CAM)	• Supplements (e.g., vitamins, minerals, and herbal remedies) • CAM therapies (e.g., aromatherapy) • Home remedies (e.g., foods, ingredients) • Seeing a CAM practitioner (e.g., naturopath)	20 (3.0)
Technology	• Using technology • Technology issues	11 (1.7)
Volunteering and advocacy	• Raising awareness • Supporting a cause or policy • Self-advocacy • Volunteering	7 (1.1)
Living with disability	• Living with disability	6 (0.9)
Natural and built environment	• Built environment • Natural environment • Transportation	5 (0.8)
Caring for others	• Caring for a spouse • Caring for parents	4 (0.6)
Death and dying	• Death/dying process • Bereavement • Euthanasia	3 (0.5)
Balance	• Falls • Walking • Balance	3 (0.5)
Continence	• Bladder function • Bowel function	2 (0.3)
Oral health	• Oral health • Ease of eating • Dentures	2 (0.3)
Other	• General health advice	2 (0.3)

Theory Development: Social Processes of Giving and Receiving Self-Care Support in an Online Community of Older Adults: Negotiating the Caring Self

The central phenomenon developed from our analysis of causal, contextual, and intervening conditions was participants’ efforts to gain and navigate membership in the online community. This was based on collective identification through shared knowledge and experiences, provision of emotional and informational support, relationship formation and maintenance, and the identities that members assumed at different times depending on their current situation and the individuals with whom they were interacting (Figure 2). The contextual conditions in which the central phenomenon was embedded included lived experience of health or aging-related issues, experiences of offline difficulties, and anonymity enabling self-disclosure and online disinhibition. The causal conditions that determined the occurrence of phenomenon were the identification of an unmet support need, users’ immediate aims of visiting the forum, and the affordances of community membership. Intervening conditions, which might be seen as mediating variables influencing action/interaction strategies, included demonstrating understanding of community norms or expectations of appropriate behavior (e.g., ways of posting and replying), expectations of posts being moderated, displaying credibility and authenticity, and estimating the costs and benefits of exchanging information or advice. Actions/interactions that members performed involved providing a description of personal experiences, requesting and providing information and advice to other users, and referring others to information sources or help. The consequences of these actions/interactions were eliciting support related to self-care, validating and empathizing with others and accepting attempts to gain membership through sharing similar experiences and giving advice.

Figure 2.

Social processes of giving and receiving self-care support in an online community of older adults.

Through the analysis we identified that members constructed three main identity categories for local (e.g., forum-specific) interests in their posts, which we labelled: (1) the support seeking self; (2) the empathizing self; and (3) the influencing self. Movement between these identities was not fixed or linear; rather, members’ identities were textually constructed characterizations that were locally situated (i.e., within the context of local peer-to-peer online interactions), action-oriented (i.e., performing a specific social function); and presented a particular category or version of a person (e.g., as authentically requiring help from other users, or as a trustworthy source of advice on specific health-related issues). Exploration of the intricacies of these identity categories showed that they were associated with distinct interactional styles serving specific social and goal-oriented functions.

The Support Seeking Self

The support seeking self was an identity in which community members posted about their experiences and requested support. This was often done as a means of eliciting a response from others and claiming membership to the community, typically as part of an opening post (i.e., the first post in a forum thread). This identity was characterized by new members providing a description of problems and requesting information from other members based on presumed shared knowledge and experience and expectations of support being provided by other members. The support seeking self-identity engaged in the processes of disclosing personal information and experiences that indicated their membership to the community and requesting information or advice from other users.

Sharing Personal Experiences

Members described lived experiences of a variety of health-related and non-health-related issues. Such descriptions were typically part of opening posts in which members initiated a new discussion thread by presenting a problem relevant to the focal category of the forum. In these posts, the focal point was often the poster and their situation rather than a specific problem, its attributes, or its resolution (e.g., Extract 1). Although the focus of these posts was not explicitly on obtaining informational support, such descriptions often served to make advice or a display of empathy relevant. The following examples illustrate how new members actively managed their socialization to the community by sharing personal experiences and eliciting support from other members:

Extract 1. “Fibromyalgia in the over 50s” (F1-T25)

Opening post:

HI. I’m new here but not new to FM/CFS. I’ll be […]¹ in a couple of weeks and for me it began during chemotherapy for the breast cancer I got for my […] birthday...so this is a rough time of year...ok...it’s all rough lately. I’m completely alone and was hoping to find someone similar to talk with.

Extract 2. “Falls – have you experienced this?” (F1-T24)

Opening post:

Hi, I am in my seventies and over the last three years, I have had a series of falls. I have had an MRI but no problem and also tested for neuropathy but not that either. If anyone else has similar symptoms please respond.

New members routinely began their posts with greetings that addressed the whole group, in the absence of knowing which member to ask specifically. They offered personal narratives of health-related and non-health-related events as justification for their initial participation in the community. Many members provided descriptions of the consequences of adverse health events and explicitly requested a response from other members experiencing similar problems or in similar situations (e.g., Extract 2). The provision of self-descriptions and narratives relevant to the focal social category of the group (i.e., health-related experiences or issues) functioned as a form of membership claim (e.g., as a cancer survivor) that signaled the poster’s authentic connection to the larger social category from which the community draws its membership (i.e., older adults experiencing health-related challenges). By presenting themselves in this way, members attempted to increase their likelihood of eliciting help from other members in the same social category.

Requesting Information and Advice From Other Members

To elicit information and advice from other community members, members regularly used explicit information-seeking strategies that often increased their likelihood of a response and continued participation in the group. Information requests were typically phrased as questions (e.g., “how does a diabetic access foot health during lockdown?”) and consisted of direct requests and references to help. In comparison to indirect requests for support, direct information requests involved a direct speech act indicating a request, which often took imperative or interrogative forms (e.g., Extracts 3 and 4). Requests for information and advice were the first attempt of many new members to gain access to the community serving the function of eliciting needed information and ascertaining other members’ likelihood of initiating contact with the new member. For example:

Extract 3. “Complaining about a Doctor” (F1-T14)

Opening poster:

Has anyone had cause for complaint, or at least reporting a matter, about treatment by a doctor? Did they follow their instinct and stand their ground or did they ‘chicken out’ and let it go, while seething inside?

Extract 4. “Dentures” (F1-T16)

Opening poster:

Is there anyone who has had a lower denture implant done, can you tell me how you got on with have the implants done […] I need to decide if i go ahead and have two implants done or stay with the normal denture that will never fit properly due to the amount of bone loss i have will be gratefull for any advise.

Requests and questions posted in forum threads were not specifically designed to elicit information from other members as such. Rather, these posts regularly served as initial probes that new members used to make a preliminary assessment of the membership, their fit, and the types of responses and relationships that were likely to be available to them. Hence, by posting an information request and constructing an identity of competence (e.g., by demonstrating an awareness of health risk factors, behaviors, and consequences), interest, or commitment to the group, new members implicitly or explicitly claimed membership to the community.

The Empathizing Self

The identity of the empathizing self typically manifested as responses to other members’ descriptions of problems and requests for support, in which community members provided validation and empathy to others experiencing problems. The empathizing self was the most common identity category in this study. This identity was characterized by established community members (i.e., those who posted frequently in the forum or were known to other users) use of strategies such as constructing expressions of empathy and offering similar accounts of health-related problems. These characterizations included the processes of sharing second stories (i.e., accounts of parallel experiences) and providing emotional support, for example, by expressing sympathy and understanding of the situation faced by the poster.

Sharing Second Stories and Providing Emotional Support

Members frequently responded to new members’ problem descriptions by welcoming the new member to the group, expressing concern or empathy (e.g., “hi, sorry to hear about your diagnosis”), followed by a similar “second story” (cf. Arminen, 2004), whereby members described parallel experiences. Second stories provided evidence of members’ understanding of the experience described in the previous story, offered emotional support, and established solidarity between members, which often increased the likelihood of a response from the original poster. Second stories usually did not provide direct advice but rather echoed previous stories by referring to, and elaborating on, aspects of an earlier story. Accounts of comparable experience by peers validated new members’ descriptions of problems and questions by suggesting that their perspectives and experiences were “normal” and commonly shared (e.g., Extract 6). For example, in Extract 5, the member begins their response to an opening post about suffering from insomnia with an expression of solidarity (“no you are not alone”) and a similar second story demonstrating that they can relate personally to the original poster’s experience.

Extract 5. “Calling all other Insomnia sufferers!” (F1-T12)

Opening poster:

Am I the only one “making tea” in the middle of the night, early hours ? cant get to sleep ....

Respondent A:

No you are not alone. I've been known to do a jigsaw till 5am. When I was […] I preferred night duty. Strangley I could then sleep in the day for at least 6hours, something I never do at night […] I'm now […] and I still don't sleep well. So next time you put the kettle on mine's tea please!!!

Extract 6. “Living with chronic pain” (F1-T50)

Opening poster:

I am a chronic cluster headache survivor and live in daily pain. Looking to chat with people who know what it's like to live in pain.

Respondent A:

I sympathise with you I suffer from chronic back pain but I just try and get on with life, keeping busy helps. I love reading and just finished […], are you into reading or does the headaches stop you.

In both Extracts 5 and 6, while members did not provide direct advice, by displaying affiliation with other users through expressions of empathy and second stories, they indirectly presented an evaluative stance toward the problem described in the opening post, for example, using descriptions in which posters provided general information about what someone might do in a hypothetical situation. Thus, while personal experience was referred to as a sufficient basis for providing information and advice to other users, it was also frequently used by members as the basis for displaying solidarity and empathy and entering the community. By validating other members’ self-identities, community members not only provided emotional support, but also managed the boundaries of acceptable or normative behavior in the forum, such as avoiding overtly impolite responses, not challenging the accuracy of others’ personal accounts, and expecting that other members would provide mutual support.

The Influencing Self

The influencing self was an identity characterized by the provision of advice for future action, often based on established personal experience, authenticity, and past engagement patterns in the community (i.e., contributing a high frequency of posts), as well as moderation of the support offered by other community members. Established community members (i.e., those who posted often), some of which were known by their username to other members, most often took on this identity. Because the discussion forum was intended for public use (i.e., non-professionals), members needed to establish their qualifications and credibility to provide information. Reference to personal experiences (both non-professional and professional) served this function and was commonly treated as a necessary pre-condition for advising other users. The influencing self was engaged in the processes of providing information and advice to other users, referring others to sources of help or information, and moderating the forum by flagging or removing offensive or inappropriate posts and welcoming new members.

Providing Information and Advice to Other Users

Members frequently responded to newcomers’ opening posts with information and/or advice about specific future actions to address health issues. Responses to new members’ problem descriptions and requests for support, particularly the first response in a thread, routinely began with an acknowledgment of the other member’s situation and an expression of sympathy (Extract 7), demonstrating some overlap with the conversational strategies used by the empathizing self. Respondents often provided a brief description to show alignment and understanding of the topic (Extract 8). In subsequent posts in a thread, many members did not include an acknowledgment or display of empathy and instead opened with information or advice about how to resolve the situation.

Information and advice were provided through subsequent replies to the original post. Members provided different levels of directness in their advice. This ranged from descriptions of personal experience, qualified or hedged advice (i.e., comments including hedging devices, e.g., “it might be worth”), indirect advice (e.g., “here’s one possibility”), and direct advice (i.e., posts that included imperatives or modal verbs such as “should” or “need to”). For example, in Extract 9, the advice giver uses an imperative to present the suggested action as desirable and appropriate. Members also provided information and/or advice by directing others to external and internal sources, including content posted on the forum or elsewhere on the site. External sources included news articles from, websites of non-profit organizations, television programs, and YouTube videos (e.g., Extract 8).

Extract 7. “New member today typing with Arthritic hand” (F1-T52)

Opening poster:

I am here typing with Arthritis in my left hand. Does anyone know any exercises that can help with the numbness and pins and needles?

Respondent A:

Sorry to hear of your painful hand [F1-T52-P01]. Have you tried the unorthodox treatment of Bee venom injections? Also try to make your diet as alkaline as possible, good luck

Extract 8. “Living alone with poor health” (F1-T49)

Respondent A:

Dear [F1-T49-P01], Very sorry to hear you are living in such a downward spiral as you say you are. Take hope in the fact that your diagnosis is not yet clarified, it may be something minor and fixable. Living alone with a chronic condition is hard. There are those who have helped themselves enormously by going inward and meditating […] Maybe have a coffee or tea morning and invite people, gives you a break from the constant thinking and thinking […] Maybe you could watch the attached video on Youtube […] I urge you to watch this

Extract 9. “Pneumonia vaccine – side effects” (F1-T57)

Respondent A:

If less than 2% develop infections after the vaccine you may just be unlucky to be within that 2%. I am sure it is self limiting and you will feel fine for your holiday […] However, if symptoms persist you should see your GP as it may just be a coincidence it began just after the vaccine.

In responding to posters’ requests for support, subsequent posters endorsed other community members’ previously posted information. In some posts, members referred questioners to a specific community member who was known in the community to have relevant expertise:

Extract 10. “Bladder problems” (F1-T9)

Respondent A:

[F1-T9-P01], look at other forum threads to find [F1-T11-P02]. She was a nurse for forty seven years. Nice lady and knows her stuff.

Extract 10 demonstrates how respondents referred questioners to other community members. Respondents often supported their referrals by offering details about other members (e.g., describing previous professional experience related to health and other personal characteristics; Extract 10) to present them as a knowledgeable, credible, and trustworthy source of information. In this way, peers guided new members to relevant and credible health information within or outside the forum through collaboration with peers who have co-constructed consensual views on the legitimacy of other participants’ claims.

Discussion

We described three self-identities and related processes that were repeatedly involved in the elicitation and provision of support: (1) the support seeking self; (2) the empathizing self; and (3) the influencing self. Each of these self-identities was associated with distinct interactional styles and modes of membership. These identities were linked in the substantive theory via their relationship to the core category of collective identification through shared knowledge and experiences (Figure 2). Movement between the identities was fluid, and, at times, community members exhibited aspects of multiple identities as they responded to emerging problems and situations. The concept of identity in relation to self-care and self-management has been explored previously (e.g., Charmaz, 1995; Morden et al., 2017). Charmaz (1995) reported that illness and other life stressors can trigger identity changes, redefinitions of the self-concept, and associated changes in social responses and interactions. In their systematic review of online peer-to-peer communities, Kingod et al. (2017) emphasized the importance of identity work related to LTCs aimed at renegotiating identities and attributing meaning to illness within social relationships. However, few previous studies have examined the identities constructed by members of online communities in the context of older adults’ health and self-care support. The present findings suggest that online peer-to-peer communities designed for older adults provide a forum for the formation and maintenance of online social networks. This can facilitate community members’ access to personalized peer advice and support and, in turn, potentially enhance self-care and the daily management of LTCs (e.g., Litchman et al., 2018b; Willis, 2018).

Our results build on prior studies in which new members were found to use common socialization strategies to account for their participation in the group (e.g., having an unmet need for support), their similarity to the group’s focal topic (e.g., describing treatment history for diabetes), and request information and advice from other members (e.g., Burke et al., 2010; Smithson et al., 2011; Stommel & Koole, 2010; Varga & Paulus, 2014). These strategies appeared to increase the likelihood of new members being granted membership to the community, as demonstrated by the frequency of responses and uptake of original posters’ requests. Burke et al. (2010) reported that newcomers frequently use proactive socialization tactics, including information-seeking, to claim group membership and assess whether other members will respond as desired. Sharing experiences and problems can serve a legitimating function in online health communities, through which members can anonymously disclose personal information and signal that they have relevant “insider” knowledge (Galegher et al., 1998).

Members routinely provided emotional support by using various strategies including acknowledging the situation, a display of alignment or empathy, and expressions of encouragement. Paulus and Varga (2015), in their discourse analysis on responses to newcomers’ posts in an online grief support forum, reported that respondents expressed empathy by constructing emotional experiences through descriptions, telling second stories, and expressed acceptance to the group by providing information. Providing emotional support and validation, as opposed to informational support (i.e., advice), has long been recognized as an effective means of comforting people in distress and a central component of therapeutic interactions (Horvath & Symonds, 1991; Li & Feng, 2015). Sharing similar experiences of problems in online communities can foster feelings of companionship and empathy while validating posters’ questions as to whether the experience they were describing was “normal” (Arminen, 2004, Varga & Paulus, 2014). The provision of social support and co-construction of online group norms can also serve to manage the boundaries of appropriate behavior for accessing and providing help in the online community (Smithson et al., 2011; Wiggins et al., 2016).

In our study, members often qualified or hedged their advice with expressions of support, solidarity, and empathy, which served to establish a non-threatening interactional context in which advice could be given and accepted. Offering advice served as a way for members to accept other members’ attempts to gain acceptance to the community and reinforce the community’s norms and interactional expectations. Our results expand on previous qualitative research on giving and receiving advice from peers in online support groups informed for various topics such as breast cancer (Sillence, 2013), bipolar disorder (Vayreda & Antaki, 2009), grief (Paulus & Varga, 2015), self-harm (Smithson et al., 2011), and suicide (Wiggins et al., 2016). Yip’s (2020) analysis of the structure and content of social support in online groups found that respondents provided similar categorical patterns of support—mainly emotional (i.e., understanding and empathy) and informational (advice) support to members’ direct and indirect advice requests. The phenomenon of offering unsolicited advice is consistent with prior studies (e.g., Paulus & Varga, 2015; Vayreda & Antaki, 2009), which reported that respondents offered advice to opening posters who did not explicitly ask for advice.

Individuals appeared to use the online community because of an unmet need for emotional or informational support relating to condition-specific, physical (e.g., activities of daily living), or psychosocial care needs. These findings are consistent with previous research reporting that members frequently turn to online communities because of an unmet “offline” need for emotional support or information that is easy to understand (van Uden-Kraan et al., 2008); could be tailored to their specific needs and circumstances (Brown & Altice, 2014; Willis, 2014); and based on direct lived experience (Kazmer et al., 2014). Our findings build on previous research demonstrating the substitutability of different types of illness work (e.g., taking medications, understanding the condition) in offline settings and the importance of online communities in enabling self-care, particularly in instances where access to offline care and support is limited or absent (Allen et al., 2016; Rogers et al., 2011; Ziebland & Wyke, 2012). In our study, community members frequently provided detailed experiential knowledge that might be unavailable in offline contexts (e.g., consultations with HCPs). Previous research has highlighted that people’s knowledge about health conditions and their management is often shaped by others with the same condition in their personal networks (Vassilev et al., 2013). This can facilitate empowerment by giving members the opportunity to consider the relevance of self-care strategies suggested by peers in their daily lives (Allen et al., 2016). The current findings extend our knowledge of online communities by highlighting the distinct self-identities that members construct, as well as the relevance of group-based processes, including social comparison and identification (“being in this together”), in supporting self-care (cf. Cameron et al., 2018). The results have implications for enhancing the effectiveness of technology-based self-care interventions by building, maintaining, or strengthening relevant social identities.

The consequences of online engagement on older audits’ LTC self-care are currently not well known. Therefore, there is opportunity for further research to help identify actual or perceived benefits associated with older people’s use of online communities, including clinical, behavioral, psychosocial, and community-level outcomes. In the case of diabetes management, participation in the online communities has been found to enhance knowledge, perceived social support, and health indicators (Litchman et al., 2018b). For example, in the study of Litchman et al. (2018a), higher online community engagement was associated with higher health-related quality of life, improved diabetes self-care, and was a strong predictor of reported glycated hemoglobin (HbA_1c). This suggests that supplementing usual healthcare activities with participation in online health communities might enhance knowledge and support, leading to higher reported health-related quality of life and self-care. Future studies are needed to determine how interaction with peers in online communities affects older adults’ self-care and health outcomes and how health-related understandings and associated behaviors spread throughout online communities. Research into older adults’ and carers’ accounts of participating in online communities will provide necessary insight into the informational and social support that is being sought and provided in these environments.

Strengths and Limitations

A strength of this study is the robustness of the methodology, which was aligned with a Straussian grounded theory approach. However, this study has some limitations. One primary limitation is that our analysis is based only on observable behavior and does not provide direct evidence of members’ intentions or psychological states. This analysis was based on data collected from one UK-based online community. Individuals who contributed to the online community voluntarily chose to do so and therefore might not be representative of many older people who do not use and seek support from peers in online communities. We did not ascertain whether this was the only online social network that individual community members used, nor whether users of the forum construct their descriptions and self-identities differently in other online environments, or when seeking support through other means, such as face-to-face healthcare encounters. Community members are likely to not only visit online communities designed for older adults/seniors/retirees and contribute to other social media platforms such as Facebook, Twitter, and Reddit. Further, data collection for the study occurred during 2020 and we noted several posts in the discussion forum that were related to the COVID-19 pandemic. Although this study did not focus on support seeking strategies and social support related to COVID-19, future research could explore the influence of the COVID-19 pandemic on the relationship between support-seeking and support offered in online communities for older adults. Lastly, we used a non-participatory (passive) approach to netnography because we wanted to reduce the impact of the researchers’ presence on community members’ interactions (Costello et al., 2017). As a result, no socio-demographic information was collected about individual community members, which limits the ability to draw specific inferences related to characteristics such as age, sex, or education. Future research could combine interviews with longitudinal social network analysis to examine how interactions with peers in online communities might support older adults’ self-care.

Conclusion

Our study provides insight into the social practices and processes involved in the negotiation of self-care support in an older adults’ online community. This study adds to knowledge about self-care among older adults by illuminating the social identities that community members routinely construct when seeking or providing support online. The three identity categories identified can inform future qualitative (e.g., in-depth exploration of social support communication) and quantitative research (e.g., testing the conceptual model and correlations with outcomes including social participation, self-efficacy, and health-related behavior). Our findings suggest that online communities can serve as a valuable source of emotional support and tacit knowledge not readily available in clinical encounters. Such platforms may be a cost-effective approach to supplement usual healthcare activities. Future work will involve examining the experiences and perspectives of older adults with LTCs regarding their online community use and interactions with HCPs. The popularity of online communities reflects broader trends of using the Internet for health-related information as governments and health authorities have encouraged people to become more independent and proactive regarding their own healthcare and health management (Cuteanu et al., 2021). However, despite an increasing democratization of access to health information and growth of Internet use among older adults, research has shown that problems can arise if there is a misalignment between information provided online and by HCPs or fear of a challenge to HCP’s authority (Litchman et al., 2018a). Given the increasing availability and access to the Internet, further research into technology-supported peer support interventions for older adults living with LTCs is warranted.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Flinders University Caring Futures Institute

Notes

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