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

Figures & data

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

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?

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]

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]

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]

Data availability statement

Data available within the article or its supplementary materials.