A qualitative study investigating users’ perspective of bariatric surgery online health communities in facilitating social support

ABSTRACT

Objective

To fulfil a need for greater access to social support postoperatively, adults who have undergone bariatric surgery have turned to Online Health Communities (OHCs). Prior research has signposted the potential “functional” dimensions of social support found via OHCs. However, the “structural” dimensions experienced on OHC have yet to be explored. This study aimed to explore users’ experience of the “functional” and “structural” dimensions of social support facilitated within bariatric surgery OHCs.

Methods

Semi-structured interviews were conducted with 13 adults who were waitlisted or had undergone bariatric surgery. Data were analysed with both deductive and inductive methodologies utilised. Deductive analysis was mapped to social support theories thus themes reflect “informational”, “emotional”, “belonging”, and “tangible” social support.

Results

There were five subthemes generated under the theme of “informational” social support, two under “emotional” and “tangible” social support, and one under “belonging” social support. Participants believed that the “informal” structural support in their life was insufficient and a contributing factor to turning to OHCs. For some participants, “formal” structural social support was facilitated via OHCs; however, most were seeking different types of support than what they can receive from their medical support team. The inductive analysis generated two themes including “access to reliable social support 24/7” and “satisfied with the support available on OHCs”, highlighting key advantages and value of OHCs.

Conclusions

There seems to be value for OHCs in bariatric surgery for social support. However, fundamentally the shared experiences and “belonging” social support seem to be a linchpin for the success of OHCs.

KEY POINTS

What is already known about this topic:

1. In Australia, to fulfil a need for greater access to social support postoperatively, adults who have undergone bariatric surgery have turned to Online Health Communities (OHCs).

2. Results from previous analysis of bariatric surgery OHCs suggest that they facilitate different “functional” dimensions of social support.

3. Little is known about the “structural” dimensions of social support concerning bariatric surgery OHCs.

What this topic adds:

1. The shared experiences and “belonging” social support seem to be a linchpin for the success of OHCs.

2. OHC users may be good at self-moderating the content shared. Thus, OHCs as part of a bariatric surgery health service may only require minimal moderation and oversight by health professionals.

3. Findings have the potential to help healthcare professionals see the value that OHCs can bring to patients and highlight key considerations in developing, implementing, or recommending them in a health service.

KEYWORDS:

• Bariatric surgery
• online health communities
• online support groups
• qualitative research
• social media
• social support

Introduction

The influence of social isolation and loneliness on health has gained interest amidst COVID-19 and there is concern about the well-being of certain groups (The U.S. Surgeon General’s Advisory, 2023). Although the risk may differ across indicators of social disconnection, a large percentage of adults who have undergone bariatric surgery report increased loneliness as a result of COVID-19 (Athanasiadis et al., 2021). This is concerning considering individuals who have had bariatric surgery are more vulnerable to the effects of isolation, such as disruption of their health habits or depression (Sarwer et al., 2019).

Bariatric surgery, also known as weight loss surgery, encompasses a group of operations that make changes to the digestive system and is clinically effective for weight loss in adults with obesity (BMI ≥ 30 kg/m²) (Maggard-Gibbons et al., 2013; O’Brien et al., 2013). Globally, obesity is a greater risk factor to health than underweight (Global Obesity Observatory, 2023). In Australia, the prevalence of obesity is 33% and 30% for males and females, respectively. Also in 2020/2021, there were 23,361 bariatric surgery procedures performed (The Bariatric Surgery Registry, 2022; Global Obesity Observatory, 2023). The 2019 AACE/TOS/ASMS Clinical Practice Guideline recommends that after bariatric surgery healthcare professionals evaluate patients’ need for support groups and encourage participation in ongoing support groups to improve weight loss and cardiometabolic risk after bariatric surgery (Mechanick et al., 2020).

Barriers to the utilisation of social support in bariatric surgery include stigma of mental health support, financial barriers, and perceptions of a lack of qualified professionals readily available . In Australia, to fulfil a need for greater access to social support postoperatively, adults who have undergone bariatric surgery have turned to Online Health Communities (OHCs) (Wright et al., 2023). OHCs are internet-based forums and can involve groups that consist of both healthcare professionals and patients or can be patient only groups (Johnston et al., 2013; van Uden Kraan et al., 2010). OHCs are easily accessible and facilitate convenient and unlimited access to social support before and after bariatric surgery, thus potentially helping overcome the barriers to seeking social support (Atwood et al., 2018; Robinson et al., 2020). Research shows that 84% of bariatric surgery patients join or follow support groups on Facebook and prefer to receive information in these groups (Martins et al., 2015).

The terminology used to describe the dimensions of social support is wide-ranging across the literature and can vary within disciplines including psychology, sociology, demography, and epidemiology. Social support theory conceptualises social support as having “functional” and “structural” dimensions (Figure 1) (Leahy-Warren, 2014).

Figure 1. Social support theory with “functional” and “structural” dimensions.

The “functional” dimension includes “informational”, “tangible”, “emotional”, and “belonging” social support (Holt-Lunstad & Uchino, 2015). “Informational” support is defined as the provision of advice and guidance (e.g., nutritional information). “Tangible” support is defined as the provision of material aid and is also referred to as instrumental support (e.g., transport to an appointment). “Emotional” support is defined as the expression of comfort and caring (e.g., an expression of concern). “Belonging” support is defined as shared social activities and a sense of social belonging (e.g., feeling part of a community) (Holt-Lunstad & Uchino, 2015). The “structural” dimension encapsulates an individual’s social networks, and can either be “informal” (e.g., family members and friends) or “formal” (e.g., patient-to-patient support groups and healthcare professionals) (Leahy-Warren, 2014).

Research in chronic diseases has found that OHCs allow patients to observe rich social support and achieve better physical health via both self-care behaviour and psychological health processes. “Informational” support and “experiential” support are both linked to self-care and “Informational” support and “emotional” support are both linked to psychological health (Lin & Kishore, 2021). In bariatric surgery, greater perceived social support is associated with lower depression, emotional eating, weight and shape concerns, and greater weight loss (Conceição et al., 2020). Literature regarding the effect of various dimensions of social support in bariatric surgery is sparse; however, weight-related “emotional” support appears to be relevant to weight loss/maintenance (Ahlich et al., 2020).

Results from the content analysis of bariatric surgery OHCs suggest that they facilitate different “functional” dimensions of social support including “informational” support and “emotional” support (Atwood et al., 2018; Cutrona & Suhr, 1992). On OHCs users are typically seeking or providing recommendations, providing information, commenting on changes since surgery, and lending support to other users (Koball et al., 2017). Concerning “structural” dimensions of social support, those undergoing bariatric surgery can have both positive and negative “informal” social networks such as family members and friends (Wright et al., 2022). Furthermore “formal” social networks such as support groups and healthcare professionals can be limited by the health services recourses or access barriers such as parking, travel time, and taking time off work (Wright et al., 2023). Little is known about the “structural” dimensions of social support concerning bariatric surgery OHCs.

Initial research on this topic has signposted the possible content and “functional” dimensions of social support facilitated via OHCs (Atwood et al., 2018; Cutrona & Suhr, 1992; Koball et al., 2017). However, the “structural” dimensions experienced on OHC have yet to be explored. It would be beneficial to build on prior research by gaining insight from the users’ perspective. A qualitative approach, interviewing users of bariatric surgery OHCs, will provide the lived experience of the situation and topic. Furthermore, this study has the potential to help healthcare professionals see the value that OHCs may bring to patients and highlight key considerations in developing, implementing, or recommending OHCs in a health service. This study aimed to explore users’ experience of the “functional” and “structural” dimensions of social support facilitated within bariatric surgery OHCs. Specifically, this research addresses two overarching research questions: 1) do online health communities facilitate “functional” dimensions of social support and, if so, what is the experience of “information”, “tangible”, “emotional”, and “belonging” social support; and 2) what is the experience of “structural” dimensions of social support concerning the use of OHCs in bariatric surgery.

Materials and methods

Study design

This descriptive phenomenology qualitative study used semi-structured one-on-one interviews to collect data from adults who were waitlisted for or had undergone bariatric surgery. The interview guide was informed by social support theories (Holt-Lunstad & Uchino, 2015; Leahy-Warren, 2014) (Table 1). Ethics approval was provided by the University Human Research Ethics Committee (2021/715). The study was reported conferring the consolidated criteria for reporting qualitative research checklist (Tong et al., 2007) (Table S2).

Table 1. Sample of semi-structured interview questions.

Enquiry	Interview question example
Background	Can you tell me about your use of online health communities be it Reddit, or Facebook Groups?
‘Functional’ dimensions
‘Emotional’ social support	Have you experienced any instances on the online health communities where someone has made you feel better just because he or she listened to your problems, and if so please describe?
‘Belonging’ social support	How similar do you feel your experiences have been compared to others on the online health community?
‘Tangible’ social support	Can you recall any instances on the online health community where either you or someone else reached out for support and received material aid? Prompt: For example, a member giving someone something tangible.
‘Informational’ social support	What are some examples where members on the online health community have provided you with advice and guidance on an issue?
‘Structural’ dimensions
Structural types of social support	From your experiences who are the people that are members on the online health community and do any provide more or less support than others?

Participants

Eligibility criteria for participation was limited to Australian residents aged ≥18 years who were waitlisted for or had undergone bariatric surgery and were engaged with bariatric surgery OHCs. Individuals who were waitlisted for bariatric surgery were included as prior research found that individuals were joining bariatric surgery OHCs preoperatively and staying in them postoperatively. Participants were recruited through social media, including Facebook, Instagram, Twitter, and LinkedIn and were recruited based on consecutive sampling.

Potential participants could register their interest via a Microsoft Form. Respondents meeting the eligibility criteria were phoned by the author DD to arrange a 30-minute telephone interview at a convenient time for the participant. No participants refused to participate or dropped out after completing the Microsoft Form. Verbal informed consent was obtained. The sample size for saturation was guided by a systematic review which demonstrates that saturation can be achieved in a narrow range of interviews (Hennink & Kaiser, 2022). Therefore, it was anticipated that 10-15 participants would be recruited.

Data collection

Participants verbally provided background demographic details, including self-identified gender, age, ethnicity, relationship status, education, occupation, employment status, bariatric surgery type, and where and when the bariatric surgery occurred. Interviews were conducted by DD, a female Master of Clinical Psychology student and Provisional Psychologist with clinical experience relating to complex obesity and bariatric surgery patients, and Masters-level qualifications in Business. Participants were notified that DD was undertaking this research as a requirement of her degree. No existing relationships between the author and participants were previously established.

The interview guide (Table 1 and S1) was pilot tested with members of the participant group via two initial interviews and reviewed and refined by two research team members (DD, CW) to ensure the appropriateness of responses. The research was carried out between December 2021 and June 2022 via telephone at the researcher’s (DD) home, with no other researchers present. Telephone interview settings included the participant’s home or workplace. Interviews were audio-recorded on an electronic device. An automated transcription software called Otter.ai was used (Otter.ai, 2023); transcripts were later checked for accuracy and corrected using audio recordings. Transcripts were not returned to participants for comment or correction. Recruitment and interviews continued until no further themes were generated from the data (Braun & Clarke, 2022). No repeat interviews were carried out.

Data analysis

Transcripts were coded in NVivo (Version 12) (Silver & Lewins, 2014). To establish user perspectives of “functional” and “structural” dimensions of social support facilitated by OHCs, data were deductively analysed and mapped to social support theories (Holt-Lunstad & Uchino, 2015; Leahy-Warren, 2014; Umberson et al., 2010). The deductive approach was “theory-driven” and thus produced themes in accordance with the pre-specified social support theories. Considering a deductive approach can provide a less rich description of the overall dataset compared to an inductive approach, inductive analysis was also conducted (Braun & Clarke, 2021). Data were inductively analysed following Braun and Clarke’s six-step framework, based on principles of reflexive thematic analysis (Braun & Clarke, 2006; Braun & Clarke, 2013). Analysis was carried out concurrently with data collection. The first step involved the author DD becoming familiar with the data by listening to the audio of the interviews, checking and correcting automated transcripts, and re-reading finalised transcripts. Preliminary notes were taken highlighting initial trends and codes were created to identify commonalities in the data. The collated data and codes were then examined to identify themes and patterns across the transcripts. The themes were reviewed to synthesise and generate additional themes until no new themes were generated. Next, themes were operationalised using an iterative process between CW (not present at the time of interviews) and DD, whereby themes were named and defined to clarify themes and subthemes. The last two interviews mirrored existing themes, and no new themes were evident, indicating theme “saturation”. Participants were not provided with the opportunity to provide feedback on the findings.

Results

The sample (N = 13) included females (n = 9, 69%), males (n = 2, 15%), and non-binary (n = 2, 15%). They ranged in age from 30 to 56 years, with a mean age of 47.5 years (SD = 8.45). Participants had undergone either laparoscopic sleeve gastrectomy (n = 8, 62%) or gastric bypass (n = 3, 23%), or were waitlisted (n = 2, 15%). Twelve participants identified as Caucasian (92%) and one as Asian (8%). Most participants were employed full-time (n = 12, 92%) and in a relationship (n = 9, 69%). Bariatric surgery procedures took place between 2017 and 2021 for the participants that had undergone surgery at the time of their interview.

The themes generated from the deductive analysis are represented in accordance with social support theory. Themes mapped to the “functional” dimensions of social support included “informational”, “emotional”, “belonging”, and “tangible” social support, as seen in Table 2. Participant quotations are provided and referenced using participant age, self-identified gender, and time since surgery. There were five subthemes generated under the theme of “informational” social support, two subthemes under “emotional” social support and “tangible” social support, and “belonging” social support had one subtheme.

Table 2. “Functional” dimensions of social support including “information”, “emotional”, “belonging”, and “tangible” social support.

Functional dimensions of social support. Themes and subthemes	Representative quotes
‘Informational’ social support
Not medical advice There was a shared perspective that OHCs should not be used as a source of medical advice. OHC users encouraged others to seek medical advice where appropriate.	“I didn’t look for medical advice on the forums. It’s very clear on the online forms … that it is not a place for medical advice. If you see someone coming onto the forum asking for medical advice, people are very quick to tell them to go and get medical advice. People are very clear about their roles and what they can and can’t advise people about”. [52, non-binary, ≤12 months post-surgery]
Repeated information increases perceived credibility When information on the OHCs was consistent with that provided by the healthcare professional, or it has been shared multiple times from different sources, this increased the perceived credibility of the information.	“Generally speaking, it’s very similar messaging to what you see from a health professional” [37, female, ≤12 months post-surgery] “I really trust the wisdom of everybody’s collective experience much more than I would one person … like an aggregate of common experiences”. [52, non-binary, ≤12 months post-surgery]
Vulnerable to inaccuracies Participants were aware that not all information shared within OHCs was trustworthy.	“There is a lot of misinformation that can happen online … everything should really be taken with a grain of salt”. [34, non-binary, waitlisted]
Reading shared content ‘just in case’ Regardless of whether it was relevant to them at the time participants reported reading information shared just in case, as it may be relevant to them in the future.	“Even if it isn’t anything I’m experiencing at the moment, it could happen. If it ever were to, I can see that these are some of the symptoms I should look out for”. [37, female, ≤12 months post-surgery]
Troubleshooting and sharing health knowledge OHCs facilitated ‘troubleshooting’ and participants sought and contributed health knowledge on various topics, including health professional recommendations, recipe ideas, and surgery side effects.	“Sometimes it was troubleshooting. Having people who’ve been in that circumstance to ask, ‘is this normal? What worked for you in this space?’” [37, female, ≤12 months post-surgery] “I’ll just search ‘protein recipes’ … and it’ll come up with great recipes that people have tried before”. [47, female, ≤12 months post-surgery]
‘Emotional’ social support
Sharing and normalising experiences and looking for reassurance/confirmation Participants reported giving and receiving emotional support and often this was through validation of feelings or experiences. The support provided was identified as a key benefit of OHCs.	“If I am having a tough day I do check in online … just to see if there’s anyone else going through something similar to me, just so I know that, OK what I’m feeling might be just normal”. [47, female, ≤12 months post-surgery] “I get support from reading other people’s experiences online. Even that emotional support helps me cope with knowing that I’m not alone. My fears and worries, concerns paranoia, and all that sort of stuff get validated”. [34, non-binary, waitlisted] “I’m always happy when I see the support and the kindness. I think that is probably their greatest strength [of OHCs]”. [52, non-binary, ≤12 months post-surgery]
Esteem support Participants found it inspiring to see others’ success with bariatric surgery.	“When you see other people posting in the online groups, ‘I’ve lost 100 kilos, and I’m now a personal trainer … ’ or ‘I can wear bikini to beach’. It does kinda give you the motivation”. [47, female, ≤12 months post-surgery]
‘Belonging’ social support
A good sense of belonging and community Participants perceived OHCs facilitated a sense of belonging. Participants described a strong sense of belonging through feeling understood and talking to others that were in the same situation. Even if an individual was more passively involved, they still felt like they belonged.	“[OHCs] are a place where you really feel understood, that you don’t feel anywhere else”. [56, female, 2 years post-surgery] “I do belong and it gives me a big confidence. I am speaking with total strangers online, which is something that I struggle to do when I am in person. I am an introverted person, so I lack that confidence. But online I would say, yes, I do feel like I belong”. [32, male, waitlisted] “I’m not someone who interacts … but I do feel like you know, I’ve had the surgery and I do foster that community. I still feel like I belong … I identify as I had the surgery and they welcome you with open arms basically”. [30, female, 1-year post-surgery]
‘Tangible’ social support
Selling or giving away shakes Participants perceived that OHCs allowed people to give away or sell leftover shakes. In contrast, members did not perceive OHCs facilitated tangible support such as a lift to a medical appointment.	“Often people are selling the leftover shakes”. [46, female, 4 years post-surgery] “People don’t form close friendships for things like driving to hospital appointments. People are all over the country, you’re not as likely to find people very local to you”. [39, female, ≤12 months post-surgery]
Providing links Participants reported sharing ‘links’ and recipes with each other which could be considered material aid	“They’ll be like, ‘yes, do your own research, but here is a link’”. [34, non-binary, waitlisted] “I’ll just search ‘protein recipes’ you know … and it’ll come up with great recipes that people have tried before and things like that as well”. [47, female, ≤12 months post-surgery]

‘Informational’ social support

Participants were not turning to OHCs for medical advice, rather OHCs were used for troubleshooting and sharing health knowledge with a common understanding of the importance of continuing to seek medical advice from healthcare professionals. Information on the OHCs was often read “just in case” as it may apply in the future. The repetition of information and when information was consistent between OHCs and healthcare professionals the perceived credibility increased. Nonetheless, participants were aware that not all information shared on OHCs was trustworthy.

‘Emotional’ social support

The biggest contributor to emotional social support was how OHCs facilitated sharing and the normalisation of experiences. Feelings and experiences were validated among users and identified as a key benefit of OHCs. Additionally, posts on OHCs were a source of motivation as individuals could aspire to the progress of others.

‘Belonging’ social support

Similarly, the shared experiences on the OHCs created a sense of community and belonging. The online forum allowed individuals who were more reluctant or introverted to speak to “total strangers”. However, participants also highlighted that they did not necessarily need to be actively posting or talking to others to feel a sense of community as the group identity is associated with having undergone bariatric surgery.

‘Tangible’ social support

This theme was less prominent; however, there were instances where OHCs provided people the opportunity to give away or sell leftover very-low-calorie-diet or protein shakes. It was not believed that OHCs were facilitating tangible support such as offering a lift to a medical appointment. However, the sharing of links and recipes was a perceived benefit of OHCs.

The themes mapped to the “structural” dimensions of social support including “informal” and “formal” social support are seen in Table 3. There were three subthemes generated under “informal” social support, and two subthemes under “formal” social support.

Table 3. “Structural” dimensions of social support including “informal” and “formal” social support.

Structural dimensions of social support. Themes, subthemes, and descriptions	Representative quotes
‘Informal’ social support
Family and friends did not understand and individuals lacked connectivity with others who had undergone bariatric surgery Participants identified feeling isolated due to a lack of understanding from their family and friends about the struggles of being overweight, weight loss, and deciding to have bariatric surgery. People turned to OHCs because they did not have anyone in their personal life who had experienced bariatric surgery from whom they could seek support.	“I felt quite isolated. I didn’t feel like my family and friends understood what I was going through”. [47, female, ≤12 months post-surgery] “The real world is not understanding of people’s experiences of having weight loss surgery”. [52, non-binary, ≤12 months post-surgery] “That’s the reason I went online. I don’t have anyone in my life that’s actually going through the surgery”. [34, non-binary, waitlisted]
Bariatric surgery kept as a private experience Reasons for keeping their decision to have surgery private from friends and family included feelings of shame and judgment.	I haven’t told many people, I’m not open about it. I don’t really want other people to know you know my background or my history. I don’t feel comfortable answering questions and justifying myself as to why I did it”. [56, female, 2 years post-surgery]
Wisdom from “elders” who had undergone surgery some time ago There was a consistent perspective that most users of OHCs were other individuals who had undergone bariatric surgery. Valuable support was obtained from the “elders” who had undergone surgery some time ago, as they understood all stages of the bariatric surgery experience.	“The people who had it done 10 or 15 years ago, they’re probably your most coveted pieces of information and advice”. [37, female, ≤12 months post-surgery] “The elders come back in with their experience of what it’s like a bit further out … they aggregate information and share, and often those people are moderators in the community as well”. [52, non-binary, ≤12 months post-surgery]
‘Formal’ social support
Healthcare professional-to-patient support Some participants described accessing information from healthcare professionals via social media and closed site-specific online groups.	“The group that was specific to the weight loss clinic that I went through, you could access the practice nurse [via the OHC]”. [51, female, 5 years post-surgery] “A few of those Instagram pages are run by nutritionists and dietitians and they solely concentrate on people that have had bariatric surgery”. [46, female, 4 years post-surgery]
The lived experience is invaluable and cannot be obtained from formal social support Participants recognised that OHCs facilitated peer-to-peer support, which offered a perspective that could not be obtained from healthcare professionals (formal social support)	“There are things about the surgery that the doctors can’t tell you, things that only other people that have had the surgery can share with you”. [32, male, waitlisted] “Professionals, I find, they read from a script … The best support you get is from someone who has experienced it. It takes one to know one”. [56, female, 2 years post-surgery] “For the majority of us, when we have emotional and dramatic responses to the surgery, the support you need is beyond medical. The emotional support … is actually really helpful and healthy”. [52, non-binary, ≤12 months post-surgery] “Yeah, I’m really satisfied because they’re just set up by citizens. Citizens that don’t give health advice, and I love that. For the majority of us, when we have emotional and dramatic responses to the surgery, the support you need is beyond medical. The emotional support … is actually really helpful and healthy”. [52, non-binary, ≤12 months post-surgery]

‘Informal’ social support

Some of the reasons participants turned to OHCs were a lack of understanding from friends and family and a lack of connectivity with others who had undergone bariatric surgery. However, not everyone chose to share with friends and family that they had undergone the procedure due to fear of shame. Having joined OHCs, participants believed those that had undergone surgery some time ago (i.e., 10–15 years ago) were a source of wisdom.

‘Formal’ social support

Whilst not commonly reported, some individuals had engaged with OHCs that involved healthcare professionals. This was typically via closed site-specific OHCs or other social media platforms such as Instagram. Overall, it was generally believed that the lived experience is invaluable and similar support cannot be obtained from healthcare professionals.

Two themes were generated through inductive analysis including “access to reliable social support 24/7” and “satisfied with the support available on OHCs” (Table 4). These additional themes highlighted that the support available on OHCs was reliable and accessible 24/7. Overall participants were satisfied with the social support facilitated through OHCs.

Table 4. Themes generated through inductive analysis.

Themes and descriptions	Representative quotes
Access to reliable social support 24/7 Participants appreciated that OHCs gave them access to social support anytime they needed it. Participants recognised this as a benefit they could not get from their healthcare professional, friends, or family. Furthermore, there was an understanding among participants that they could depend on other OHC users for support.	“You might ring the doctor to discuss whatever it is that you’re concerned about, but the appointment could be weeks away. You can access support online in a much timelier sort of way”. [51, female, 5 years post-surgery] “I know that if I ever needed anything, I could put something in one of the Facebook groups … I know that if I was struggling with something I could ask the group … I feel pretty confident people would respond”. [46, female, 4 years post-surgery]
Satisfied with the support available on OHCs Participants expressed their satisfaction with the social support OHCs provided.	“In terms of the facts and the scientific part, I can get that from the doctor. But in terms of the mental support, if I could give it [OHCs] a score out of 10, I would give it a score of at least a 9 out of 10. Because it surpassed what I was expecting”. [32, male, waitlisted]

Discussion

This study aimed to explore users’ experience of the “functional” and “structural” dimensions of social support facilitated within bariatric surgery OHCs. Building on previous research, this study has the potential to help healthcare professionals see the value that OHCs can bring to patients and highlight key considerations in developing, implementing, or recommending OHCs in a health service. Throughout the analysis, there was evidence of participants giving and receiving social support. Participants mentioned that social support through OHCs made them feel good, reassured, and validated, demonstrating the value received. It was evident that people interact with OHCs differently; yet, they turn to OHCs for similar reasons. OHCs seem to offer the right support at the time that it is needed most and generally this is via communities created by citizens for citizens. There were some instances of closed, site-specific, online groups with formal healthcare professional-to-patient support; however, people are clearly looking for different types of support than what they can receive from their medical support team. A key driver of support and satisfaction with OHCs was the sense of community. “Informal” structural support networks in people’s life were reported as inadequate or insufficient and were an additional reason why they turned to OHCs. There will always be a need for “formal” social support networks i.e., with healthcare professionals; however, there also seems a place for OHCs for social support in bariatric surgery.

Some participants reported interacting with OHCs passively and as a “lurker” they would not post but would read what others were saying and took that support without offering support to others. Literature investigating “lurkers” online suggests reasons that stop them from interacting include environmental influences, personal preferences, individual-group relationships, and security considerations (Sun et al., 2014). Other participants reported being more active online. For the “posters” of the community, similar to volunteers they likely enjoy helping others and have an intrinsic motivation to care for others’ welfare (Meier & Stutzer, 2007). Despite literature suggesting that OHCs are predominantly made up of “lurkers” (Leigh, 2009), this was not reported as a barrier to the received and perceived social support on bariatric surgery OHCs. Rather OHCs were considered to provide a place where people could go 24/7 to find support and deliver the right support, at the time that it is needed. This would help individuals to overcome barriers to seeking social support including access, shame and stigma. Regardless of acting in different ways, both “lurkers” and “posters” turned to OHCs for similar reasons i.e., to obtain answers to their questions, for reassurance, validation, confirmation, and the normalisation of experiences.

Notably, most participants reported using bariatric surgery OHCs that were created and moderated by citizens for citizens. Some participants reported using closed, site-specific, online groups with formal healthcare professional-to-patient support. It could be suggested that the participatory patterns in these groups would be different. Research investigating the effect of “lurkers” on network value and how to optimise the promotion and management of organisation led OHCs may be beneficial. Closed, site-specific, online groups may need to ensure some users would be considered as “posters”, as opposed to having “lurkers” only, as they are likely to generate the majority of the traffic and create value. Their recruitment and retention would be important to the long-term success of the OHC. Furthermore, it could be important to include individuals who have undergone bariatric surgery more than ten years prior, as they are perceived as the “elders” who can offer wisdom due to their postoperative experiences.

The level of engagement with OHCs did not seem to influence “belonging” social support, rather the commonality of having undergone bariatric surgery automatically created a sense of community and the shared experience united OHCs users. The shared experience appears to be a key driver of support and satisfaction with the OHCs. Participants draw on OHCs to fill a void and in recognition of their need for social support. Some participants indicated that they have insufficient support from friends and family, or that their friends and family do not know how to support them (“informal” structural support). Whereas OHCs provide support because of the shared experience. Furthermore, OHCs seem to allow individuals to have a supportive community while being relatively anonymous and not feeling judged. The anonymity that OHCs can provide would be an additional benefit to those who choose to keep their bariatric surgery experience private. Anonymity and privacy can be important for users to disclose risky health behaviour (Weinberg et al., 1996). It may also be a factor that determines whether individuals will seek information on health problems, particularly those that carry some stigma.

It seems people are clearly looking for different types of support than what they can receive from their medical support team. They are seeking reassurance and validation for what they are feeling and going through both physically and emotionally. The value perceived from patient-to-patient “informational” social support facilitated via OHCs was not due to the exchange of trustworthy information; instead, it performed a secondary function of “emotional” and “belonging” social support. Results suggest that OHC users may have an appropriate understanding of the types of information suitable for sharing and when it is fitting to discuss matters with a healthcare professional, along with being good at self-moderating the content shared. This provides more context and offers an alternate view to previous studies that recommended healthcare professionals exercise caution when endorsing OHCs for information-seeking patients due to the inaccuracies in the information shared (Koball et al., 2017). Given the apparent skill of self-moderating content and the value received and perceived by users from OHCs, this may offset the risk of inaccurate information. Practical implications could be that if a health service is considering implementing a site-specific bariatric surgery OHC, it may only require minimal moderation and oversight by healthcare professionals.

This study had potential limitations. Participants were privately funded bariatric surgery patients; findings were only representative of the participants included, which may have introduced some sociodemographic characteristic biases. A higher proportion of female than male and non-binary participants may also impact responses. However, 79% of weight loss surgeries in Australia are carried out on female patients, and 88% are privately funded (Australian Institute of Health and Welfare, 2017). Therefore, the sample was representative of the demographic of the Australian bariatric surgery population. Increased psychological distress from the COVID-19 pandemic was reported to negatively impact bariatric surgery patients’ ability to self-manage obesity and mental health (Youssef et al., 2021). Interviews were conducted while COVID-19 restrictions were in place, which may have reduced participants’ access to formal structural social support including in-person support services at the hospitals, and increased respondent anxiety, which may have impacted the results. In addition, surgical timeframes were different for each participant, which may have influenced the participant’s perspective of the utility of the OHC; however, the purpose was to explore subjective experiences and perspectives, and such experiences continue to contribute to the narrative about the role of OHCs in the provision of social support (Green & Thorogood, 2018). While this study provided an initial understanding of how users perceive OHCs to facilitate different aspects of social support, some constructs were not included that would shed further light on this topic. For example, perceived health benefits facilitated by OHCs, and the relationship between OHC usage and psychological, health, and weight loss outcome following bariatric surgery.

Conclusion

Findings support that OHCs facilitate “functional” social support including “informational”, “tangible”, “emotional”, and “belonging”. “Informal” structural support in people’s lives can be insufficient and a contributing factor to turning to OHCs. For some “formal” structural social support was facilitated via OHCs; however, most were seeking different types of support than what they can receive from their medical support team. There seems to be value for OHCs in bariatric surgery for social support, whether that is communities developed and moderated by citizens for citizens or closed, site-specific groups. However, fundamentally the shared experiences and “belonging” social support seem to be a linchpin for the success of OHCs. Participant perspective on OHCs for supporting weight loss, psychological health, and long-term weight management in the post-bariatric surgery period was not addressed and could be beneficial to explore in future research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data available within the article or its supplementary materials.

Supplementary data

Supplemental data for this article can be accessed at https://doi.org/10.1080/00049530.2023.2292022.

Additional information

Funding

CW is supported through an Australian Government RTP Stipend for academic Doctor of Philosophy program