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Recent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”
The aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.
A systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.
The main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (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-management support.
Social ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual’s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.
Population aging has resulted in an increased prevalence of long-term conditions, which has resulted in increased expenditure on the provision of care for those affected [
The current economic and philosophical landscape of the National Health Service (NHS) necessitates the need for illness work to be delegated to those with a long-term condition and policy makers hope this will reduce health service utilization [
Recent research has begun examining the social context of long-term condition self-management and, more specifically, the role of others in shaping and supporting self-management practices [
Illness (specific) work: work such as taking medication, taking and interpreting measurements, understanding condition and its symptoms, and making appointments [
Everyday work: tasks such as housekeeping, occupational labor, support, and activities relating to diet and exercise, shopping, and personal care [
Emotional work: work related to comforting when worried/anxious about everyday matters, such as health, well-being, and companionship (including a biographical dimension relating to the reassessment of personal expectations, capabilities, future plans, personal identity, relationships, and biographical events) [
Contingency/improvisation: the work involved in getting things back on track [
Translation/mediation: the work involved in translating abstract knowledge into practical knowledge that can then be implemented [
Coordination: the negotiations and renegotiations in the ways in which work is done, such as what work is done, by whom, when, how, and why [
Advocacy work: work done by others on one’s behalf [
Weak social ties also contribute to illness work by affording greater access and transmission of information between network members; the value of these ties lays in their quantity rather than their intensity [
Online communities are particularly good at facilitating the creation of weak ties [
An existing review by Ziebland and Wyke [
In this context, its relevant to understand the extent to which social ties created in these online spaces contribute to long-term condition self-management through the negotiation of illness work (illness work is described as the visible and invisible activities of long-term condition self-management) [
A meta-synthesis draws on the subjective and interpretive nature of existing qualitative research to construct more complete and plausible understandings of reality than what is currently available from the existing literature. There are several approaches to qualitative synthesis; in this instance, Paterson et al’s [
By including articles that used different methods, examined different types of online communities, and different conditions, this meta-synthesis is able to add to the existing evidence base, bringing research data from an initially narrow focus (ie, a specific condition and online community) toward a broader interpretation of long-term condition illness work in online settings.
To guide the systematic search of the literature, the research team (CA, IV, AK, AR) agreed on the following predetermined inclusion and exclusion criteria, taking into account the aims of the meta-synthesis. The predetermined inclusion criteria were (1) studies examining the use of online communities for those with a long-term condition (including communities hosted on social media sites such as Facebook and Twitter), (2) studies that focused on online communities from a naturalistic open setting, (3) research between 2004 (the year the term “Web 2.0” became popularized) and 2015 (when the search took place), and (4) research that used qualitative methods. The predetermined exclusion criteria were (1) studies not written in English, (2) research including interventions, (3) research from the perspective of health care professionals/carers/relatives, (4) research that only used quantitative methods, (5) literature reviews and review papers, letters to the editor and editorials, commentaries and feature articles, dissertation theses, reports, conference papers, and abstracts, (6) studies only on traditional Internet use and without an interactive social component (ie, Web 1.0 and blogs), and (7) studies with a commercial, advertising, or marketing focus, where levels of bias could be seen as high.
A systematic approach was used to locate the relevant published research studies in the area of online communities and long-term conditions. Because online communities in relation to health have been explored across a multitude of professional and theoretical concepts, health, social care, psychology, and sociology databases were searched. The systematic search of the research literature used the following databases: Allied and Complementary Medicine Database (AMED), Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Database of Systematic Reviews, DelphiS, EMBASE, the International Bibliography of Social Sciences (IBSS), MEDLINE, PsycINFO, Scopus, Sociological Abstracts, and Web of Science. The searches were conducted using a predetermined search strategy, using the search terms in (
The systematic review of the available literature occurred in August 2015. The search strategy using the aforementioned databases located 1944 research articles. Titles and abstracts were reviewed against the inclusion criteria; from this, hard copies of 79 articles were obtained. These were screened against the inclusion/exclusion criteria (by CA, AK and IV), resulting in a total of 14 papers. A further 10 papers were found through submersion in the research literature and through the reference lists of eHealth articles read by the research team. From this, a further seven papers met the criteria for inclusion. All selected papers were discussed by the team in view of the objectives of better understanding the contribution of online social networks in long-term condition self-management. This process can be seen in
Articles included in the meta-synthesis and quality appraisal scores using the Critical Appraisal Skills Programme (CASP) tool.
Study | Condition | Platform | Method | Sample | Study details | CASP scorea |
Attard and Coulson [ |
Parkinson disease | Disease-specific discussion board/forum | Qualitative thematic analysis of messages posted to a discussion board | 1013 messages posted to the board between 2003-2010 | To explore the experiences of members of a Parkinson’s disease forum | 9 |
Barker [ |
Fibromyalgia | Disease-specific discussion board/forum | Thematic analysis | 249 participants in Fibrospot | Examines the conflicts between lay and expert knowledge in electronic support groups | 9 |
Brown and Altice [ |
Opioid dependence | Disease-specific discussion board/forum | Grounded theory approach | 121 threads from 13 discussion boards in a 26-month period | To identify facilitators of self-treatment by online buprenorphine/naloxone users | 9 |
Coulson [ |
Alcohol use disorder | Disease-specific discussion board/forum | Inductive thematic analysis-netnography | 738 messages on 3 UK-based discussion boards | To explore in-depth how members of online alcohol use disorder communities engage with peer-to-peer support | 9 |
Coursaris and Liu [ |
HIV/AIDS | Disease-specific discussion board/forum | Content and thematic analysis | 5000 postings(not disclosed how many participants contributed to this) | To provide an in-depth understanding of social support exchanges in online HIV/AIDS self-help groups | 8 |
Greene et al [ |
Diabetes | Content analysis | 233 wall posts and 457 discussion topics | Examine the content of communication in Facebook communities dedicated to diabetes | 8 | |
Hadert and Rodham [ |
Arthritis | Disease-specific discussion board/forum | Interpretive phenomenological approach | 60 users who posted 87 initial messages + 314 users who posted 981 replies | To discover how and why the online arthritis message board was used | 9 |
Kazmer et al [ |
ALS | Patients Like Me (an online community that connects people with the same condition) | Inductive thematic analysis | 1000 randomly selected messages from an available 2500 messages posted between Feb 2006-Nov 2008 | How and why knowledge is shared among the distributed participants in the PLM-ALS threaded discussion forum | 9 |
Kirk and Milnes [ |
Cystic fibrosis | Disease-specific discussion board/forum | Online ethnographical approach | 279 individuals who participated in forum over a 4-month period | To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis | 9 |
Loanne and D’Alessandro [ |
Motor neuron disease/ALS | Disease-specific discussion board/forum | Content analysis | 499 posts made by 133 participants | Explores whether social capital can exist in an online health community for people affected by MND/ALS | 8 |
Matura et al [ |
Pulmonary hypertension | Disease-specific discussion board/forum | Qualitative descriptive methodology | Convenience sample (all posts in 2010) | To determine how patients with pulmonary hypertension use online discussion boards | 9 |
Mazzoni and Cicognani [ |
Systematic lupus erythematosus | Disease-specific discussion board/forum | Content analysis | 118 posts corresponding to 118 authors | To explain the demand/supply of social support through the Internet in relation to the description of personal illness experience | 9 |
Merolli et al [ |
Chronic pain | Did not specify; patients recruited through Facebook, Twitter, Daily Strength, and Patients Like Me | Thematic content analysis; online survey | 218 people with chronic pain who completed an online survey | To examine what social media therapeutically affords people with chronic pain who are self-managing their condition | 9 |
Mo and Coulson [ |
HIV/AIDS | Disease-specific discussion board/forum | Thematic analysis of completed online surveys | 115 participants who completed an online survey | To explore the potential empowering and disempowering outcomes of online support group use by those with HIV/AIDS | 9 |
Rodham et al [ |
Complex regional pain syndrome | Disease-specific discussion board/forum. | Interpretive phenomenological analysis | 60 participants who posted or commented on a post on a discussion forum in a 4-month period | To explore how an online message board designed for patients and carers of patients with CRPS was used; specifically, sought to explore the exchanges that took place on the online message board | 10 |
Van Berkel et al [ |
ALS, diabetes, ADHD | Disease-specific discussion board/forum | Deductive thematic analysis | 5532 posts from seven message boards | To examine whether empowerment processes occur on message boards discussing medicines used to treat three chronic conditions as well as examining the quality of information that is shared | 9 |
Van Uden-Kraan et al [ |
Fibromyalgia, arthritis, breast cancer | Disease-specific discussion board/forum | Content analysis of postings to a discussion board/forum | Random sample of 1500 postings to discussion board/forum for fibromyalgia, arthritis, breast cancer | To explore who uses online support groups, what topics are discussed, and what self-help mechanisms are used in these groups | 8 |
Van Uden-Kraan et al [ |
Fibromyalgia, breast cancer, arthritis | Disease-specific discussion board/forum | Semi-structured interviews, inductive analysis | 32 participants | To explore if, and in which ways, patients feel empowered by participation in patient online communities | 9 |
Wentzer and Bygholm [ |
COPD and fertility problems | Disease-specific discussion board/forum | Qualitative analysis using critical interpretation and narrative analysis | 4301 posts to 2 forums | Is communication in online patient support groups a source of individual and/or collective empowerment? | 8 |
Willis [ |
Arthritis | Disease-specific discussion board/forum | Ethnomethodology | 20 members across 4 communities | To understand how patient with arthritis use patient online communities to exchange illness related information to better manage their long-term condition | 9 |
Zhang et al [ |
Diabetes | Case study | Case study of a Facebook group with 30,000 users | Explores Facebook as a platform for health information and communication, specifically what the characteristics of the Facebook diabetes group and its members | 8 |
a Maximum score is 10.
“
AND
Chronic” OR “Chronic disease*” OR “Chronic Illness*” OR “Long term condition*” OR “Long-term condition*” OR “Long term health condition*” OR “LTC*” OR “chronic pain*” OR “pain*” OR “fibromyalgia” OR “chronic obstructive pulmonary disease” OR “COPD” OR “diabet*” OR “irritable bowel syndrome” OR “IBS” OR “heart disease” OR “HIV” OR “AIDS” OR “Stroke”
AND
Self-management” OR “self management” OR “Self-care” OR “Self care”
Flowchart of systematic search strategy, process and selection of research papers for review.
The included papers were critically appraised according to the Critical Appraisal Skills Programme (CASP) checklist for qualitative research (by CA) [
The findings of this synthesis are limited by the methodology of many of the included papers [
Only three articles [
The long-term conditions examined in relation to online communities were diverse and clearly projected different illness experiences. They included heavily stigmatized conditions such as alcohol and substance use disorders [
To synthesize the data, the articles identified were read and logged into extraction forms (by CA). The extraction form used was adapted from a previous meta-synthesis. These were used to ensure the multiple concepts in the included articles were translated into one another. The extraction form included demographics, condition, group type, principal research question/aims, methodology/data collection strategy, principal findings, subthemes, theoretical concepts, conclusions, and study limitations. Within these extraction forms, we also included all verbatim quotes from participants (first-order constructs); this allowed us to see that the quotes from the participants fitted logically into the second-order constructs (the original author’s interpretations) of the original articles.
Because the second-order constructs are interpretive, the concepts across the articles are presented in different ways. To synthesize the findings and concepts of the different articles into one another (second-order synthesis), we experimented with different visualizations of the second-order constructs used in the existing articles and examined the different arrangements of the key concepts from these studies. This involved a number of iterations before the final conceptualization of second-order constructs were agreed (by CA, IV, AK, AR). Following the synthesis of the second-order constructs, six second-order constructs were identified that illuminated how the social connections forged online contributed to long-term conditions self-management. From this, the synthesized second-order constructs (taken from translating the key themes in the included articles) were brought together and then reconfigured as a line of argument toward better understanding the negotiation of illness work in patient online communities.
Members were frequently drawn to online groups through an unmet offline need for condition-specific information that was easy to understand [
The information available in the groups frequently pertained to lived illness experience [
The included articles all demonstrated online communities’ ability to enable members to reach out to peers for practical illness-specific advice. The peers that they connected with were able to develop expertise about daily treatment practices through trial and error, giving them valuable knowledge and information about the daily practicalities of self-managing a long-term condition that extended beyond the empirical evidence available to HCPs [
The sharing of experiential information in online communities is an important feature in shaping the experience of those living with a long-term condition because the information shared in these communities frequently favored patient-centered goals as opposed to HCP-centered metrics [
Having access to the online community made members feel less alone and provided a reference for what was a normal illness experience [
Meeting people who understood the challenging nature of self-management allowed members the opportunity to be positively appraised for accomplishments that their offline contacts might not recognize as achievements [
The sharing of condition narratives enabled members the opportunity to reevaluate their situation through lateral and downward social comparison. Being able to see how others coped with their condition reassured members that they could manage their condition through education, adjustment, adaptation, and acceptance [
Communities often demonstrated a clear sense of comradery, with the communities inferring strong community structures, cultural norms, and group orthodoxies [
In several instances, users connected with these communities to mitigate loneliness and isolation in their offline worlds [
These communities provided a safe environment for the sharing of condition narratives. The process of narrative sharing offered immediate psychological relief because members often felt unable to express negative emotions offline due to the perceived need to maintain a positive social front [
Acquiring certain types of sensitive information, that may be important in developing a holistic self-management strategy such as information pertaining to sex and incontinence, appears to be easier to navigate in these online communities due to the presence of benign disinhibition and dissociative anonymity [
Following a process of synthesis, the second-order constructs described previously were reconfigured toward understanding what is significant about the negotiation of self-management support and illness work in online communities for those living with a long-term condition. This translated into a line of argument synthesis in which four network mechanisms for self-management support in online communities were identified. A summary of the second- and third-order constructs is shown in
Summary of second- (blue) and third-order (gray) constructs in relation to the negotiation of self-management support in patient online communities.
Given that “the Internet has changed people’s relationship with information” [
In addition to the availability of cocreated experiential knowledge, the presence of distributed health literacy enabled community members to find the information they required. Online social ties can act as health literacy mediators [
In offline consultations, a mediator such as close friend or family member is often present to help the person comprehend what is being discussed [
Additionally distributed knowledge and information in these communities constituted a by-product of the continued engagement of network members [
The provision of information should be considered an important component of any long-term condition self-management package [
In addition to information and health literacy mediation, these communities facilitate the negotiation of illness emotional work and its biographical dimension, whereby emotional work relates to the provision of comfort when someone is upset, anxious, or worried about everyday issues, such as their health, well-being, and companionship [
By engaging in online communities, individuals were able to gain emotional support that they had been unable to access in their offline worlds and by connecting with those with a shared embodied experience were able to feel normal [
In addition to navigating network contacts, those with a long-term condition need to negotiate and renegotiate existing relationships, roles, and engagement with network members. Negotiating help offline is frequently accompanied by obligations and expectations and may be restricted by time [
In much the same way as gifting relationships stock UK blood banks [
The process of sharing information appeared to have a useful dual purpose, providing information for those in need, but also affording others with their altruistic need to impart the knowledge that they had accumulated [
In these communities, conversations frequently extended beyond illness into everyday matters and interests [
The presence of a long-term condition may place greater salience on support from family and close friends, reducing the opportunities to build and maintain contacts that extend beyond this. Socializing with people online and being able to build relationships with new people allows individuals to build new networks of influence that extend beyond intimate offline contacts. Consequently, those whose condition may have eroded the ease with which they can build and maintain weak social ties appear to benefit from being able to substitute for this by building new networks of contacts in patient online communities. However, that this support often remained online was a source of frustration for some who wanted to extend their relationship into offline spaces, but were restricted by geography [
The “Internet paradox” article contains an argument that the Internet, as a social technology, may reduce socialization and psychological well-being [
Being able to act anonymously online highlights the presence of managing moral identity work operating in these communities. Those with a long-term condition may decide that the need to be both independent and autonomous is so important that they choose not to activate offline support despite it being available [
Suler’s [
Dissociative anonymity: people may feel that their online actions cannot be attributed to their person. In a process of dissociation, people may feel they do not own their online behaviors.
Invisibility: online, people know that others do not know what they look like. This may make people feel more able to do things on the Internet that they would not do offline.
Asynchronicity: online interactions often do not occur in real time. Not having to cope with someone’s immediate reaction to something that has been said or done may disinhibit people.
Solipsistic introjection: the absence of face-to-face cues may alter normal self-boundaries. Because people cannot see what others look or sound like online, they may introject others into their own psyche.
Dissociative imagination: people may feel the online world is not real and that the people they interact with online are not real people.
Minimization of status and authority: there is often an absence of authority figures online and people may feel they can act more freely.
Dissociative anonymity, invisibility, and the minimization of status and authority appear to have a positive impact on the negotiation of self-management support online in the included articles. The presence of “benign” disinhibition appears to facilitate the negotiation of self-management support in patient online communities because people may be reluctant to seek certain types of support in their offline worlds due to societal and self-stigmatizations. Although the online disinhibition effect may explain some of the harmful behaviors driven by toxic disinhibition, which was visible in some of these communities [
People are able to move around the Internet anonymously [
Even when everyone’s identity is known, people can feel invisible online [
Additionally, online communication lacks nonverbal cues so people do not have to worry about nonverbal responses, such as frowns, shaking of heads, or other nonverbal signs of disapproval [
The presence of benign disinhibition generates group resources because it facilitates conversations about stigmatized or taboo subjects that others may find useful and validating. It also provides a safe and effective environment for the negotiation of support, allowing people to freely discuss personal and/or embarrassing health narratives, which may be particularly important to those whose condition is heavily stigmatized as well as potentially enabling those with less stigmatized conditions to ask questions about more sensitive aspects of living with a long-term condition [
This research strengthens our socialized understanding of long-term condition self-management by taking into account the illness work of social ties mediated online and the role such ties may have in the management of a long-term condition in daily life. Effective self-management support utilizes resources and networks that are available in the everyday lives of those with a long-term condition, which operate outside of formal health care, and this meta-synthesis has shown that these are available online and important to people. Those with a long-term condition appeared to reach out to these online communities because of an unmet offline need for information and/or emotional support. This substitutability of illness work has been seen before in offline social networks [
It is clear that these communities afforded many benefits that have the potential to positively shape someone’s experience of living with a long-term condition. To some extent, the findings of this meta-synthesis necessarily overlap with the work of Ziebland and Wyke [
This meta-synthesis has demonstrated that there are several benefits to members of patient online communities over and above those available to people simply searching for the experiential accounts of others. Membership of these online communities affords those living with a long-term condition ready access to a self-management support illness workforce, particularly in relation to illness and emotional work. However, in contrast to offline social ties, these online communities provide social ties that require significantly less maintenance, less reciprocation, and are easier to negotiate. This is potentially due to the presence of benign disinhibition and the gifting economic relationships of these online spaces, whereby information and support is donated freely, as a public good, with no immediate expectation of reciprocation. Unsurprisingly, everyday work appears largely absent in online self-management support perhaps due to the need for physical presence to assist in household tasks, shopping, or personal care. There is some suggestion in the research literature of relationships evolving into more intimate communication channels and offline spaces [
Importantly, social ties forged in online spaces can perform self-management work that can improve an individual’s illness experience and can reach areas that are particularly difficult to navigate offline. Because of this, patient online communities appear to be a promising place for the negotiation of self-management support for long-term conditions that may supplement and support offline information and support and should be included in future studies exploring the social context of long-term condition self-management.
This study had a few limitations from which future directions for research are suggested. The majority of the included articles examined patient online communities that existed on condition-specific discussion forums and boards. In contrast, newer apps, such as Facebook and Twitter, are poorly represented in the existing research literature with no existing research examining long-term condition self-management support in the context of Twitter. There is also a need for future research to conceptualize how best to support those wishing to utilize these resources in their self-management strategy (eg, computer literacy, resource navigation, and training). Additionally, interventions that seek to better engage the lay natural helpers and super users present in these communities could allow us to understand and use this underutilized resource.
The process of group formation in these online worlds appears to be wholly underexplored in the current research literature. It is clear that social characteristics, such as trust and reciprocity, do exist in these online spaces, but far less is known about the process that facilitates them. Additionally, we know little about how the community is created, how issues of brokerage bring new faces into these communities, how people navigate the mass of communities online to pick one that is suitable to them, or what specific features of an online community they see as important (ie, the presence of a moderator, charity run, professional recognition, site architecture). A case study specifically looking at the social processes within these groups could illuminate this and a longitudinal approach would allow us to see how the relationships in these communities evolve over time.
Because many of the papers involved in this review used methods that did not directly engage those using these communities, there is potentially a bias toward the sharing of positive experiences. There is a need for future research to directly engage with members of these communities to find out why people are reluctant to post and illuminate how these communities help people manage their condition in daily life. Such research would also allow us to further develop our understanding of illness work online, while also helping us better understand such work in the context of preexisting offline support.
Allied and Complementary Medicine Database
Critical Appraisal Skills Programme
Cumulative Index to Nursing and Allied Health Literature
health care professional
National Health Service
This research was funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Wessex. This report is independent research by the NIHR CLAHRC Funding Scheme. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research, or the Department of Health. We would also like to thank Professor Catherine Pope for advice and comments on previous drafts.
None declared.