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1 Research Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from Are there also negative effects of social support? A qualitative study of patients disease with inflammatory bowel Alexander Palant, Wolfgang Himmel Palant A, Himmel W. To cite: Abstr AC t s trengths and limitations of this study Are there also negative Social support is considered an important Objective effects of social support? By conducting resource in coping with chronic conditions. ► The study uses the participants’ perspective to iden- A qualitative study of a series of interviews with people who suffer from tify the effects of social support. patients with inflammatory inflammatory bowel disease (IBD), we received the BMJ Open bowel disease. ► The open character of this interview study allowed impression that social support in face-to-face or online :e022642. doi:10.1136/ 9 2019; participants to report the negative effects, if any, of communication could also be a source of stress and bmjopen-2018-022642 social support without feeling forced to address this strain. The aim of our study was to better understand and issue. Prepublication history for ► describe possible negative effects of social support. The results of the study can inform friends and ► this paper is available online. y analysis of narrative This is a secondar Design family and the medical professionals that unwanted To view these files, please visit interviews. The interviewees were selected using a the journal online (http:// dx. doi. information or other undesirable forms of support maximum-variation sampling approach. Grounded theory bmjopen- 1136/ 10. org/ 2018- could complicate the attempts of chronically ill pa- and the ‘OSOP’ (one sheet of paper) method were applied 022642). tients to adjust to their illness. to categorise those parts of the interviews that touched on ► Since we did not balance the pros and cons of so- y results were Preliminar the negative effects of social support. presented at the International cial support, this study should not be read as a plea etting view collection took place s The open-end inter Conference on Health and against social support. throughout Germany from September 2011 to June 2012. Person-Centered Care in the Digital Society, April 2017, Most of the participants were interviewed in their homes, Halden, Norway. some in the Department of General Practice in Göttingen. affected in Germany alone, most of them Participants tients with IBD. 42 pa 2 between the ages of 15 and 35. Received 6 March 2018 wo interrelated categories emerged: (1) esults T r Revised 3 October 2018 IBD profoundly affects the patients’ life unwanted confrontation and (2) undesirable reactions. Accepted 19 October 2018 situations, quality of life (QoL), health and The interviewees perceived social support as negative, 3 well-being. According to a meta-synthesis of http://bmjopen.bmj.com/ especially if they felt overwhelmed and/or if they had not 4 many people with IBD qualitative studies, asked for it. Consequently, some of our interview partners endure stress, pain and fatigue; they report developed strategies to prevent coming into social contact high levels of anxiety and depression and a with others or stopped talking entirely about their disease. Conclusion While social support is usually conceptualised poorer QoL. They experience a constant and perceived as a positive resource in chronic disease, it ‘push and pull’ conflict: they push to be sometimes turns into a negative experience and may end normal, but the disease pulls them back. One in social isolation and deteriorate health. This process also of the most effective ways to cope with chal- happens in online support groups and increases anxiety lenges from chronic conditions—and thus on 8 May 2019 by guest. Protected by copyright. when exchanging with other people on the internet. Before 5–7 also with IBD—is with social support. motivating ill people to seek contact with others, they 6 , et al social support According to Prang should know about the negative effects of social support. can be defined as information that helps individuals believe they are cared for, loved, esteemed, valued and belong to a network n OD Intr IO u C t of communication and mutual obligation. © Author(s) (or their employer(s)) 2019. Re-use Inflammator y bowel diseases (IBDs) are Research has shown that social support is permitted under CC BY-NC. No chronic relapsing conditions, such as Crohn’s associated with good physical health, reduces commercial re-use. See rights 6 disease (CD) and ulcerative colitis (UC), and prevents illness, moderates life stress, and permissions. Published by 5 that affect the gastrointestinal tract and positively influences anxiety and depression, BMJ. 1 9 8 Diarrhoea with or are currently incurable. The and well-being. and improves QoL Department of General Practice, University Medical Center, without passage of blood, stomach pain and protective role of social support on mental Göttingen, Germany loss are the most common symptoms weight health is also documented. Patients who are described by the patients. There are approx- supported feel more warmth and affection Correspondence to 000 inhabitants imately 200 cases per 100 and can better cope with the disease than Professor Wolfgang Himmel; 10 [email protected] de gwdg. in the Western world and 300 000 people Vice patients who have less social support. 1 Palant A, himmel W. :e022642. doi:10.1136/bmjopen-2018-022642 9 2019; BMJ Open

2 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from sequences of people talking about their lives with a chronic versa, withdrawing from friends and reducing social condition. The main goal is to show the range of patient support results in isolation and feeling low in mood, as a experiences and, by doing so, to provide free, authentic previous qualitative interview study with patients with IBD 11 in South East London found. and reliable scientific information for other people with 22 The German project currently presents similar diseases. Social support has various sources: ten 1. Family and friends provide effective support based on different health-related issues: diabetes, chronic pain, 10 where the size of a social network, epilepsy, IBD, three cancer modules (prostate, breast and close relations, particularly the number of friends, is associated with attention deficit hyperac- colon), medical rehabilitation, 12 improved outcomes and recovery. tivity disorders in children and adolescents and eating 13 Coworkers have a positive impact on work stress 2. and disorders. 14 can even act as a buffer in work–family conflicts. Overall study design 3. Face-to-face support groups can be seen as a system to This is a qualitative study. Narrative interviews were complement medical treatment through mutual care, fahr tser khei kran conducted for the health issue ‘IBD’ on - sharing information and a helpful exchange of expe 15 ungen. de using a maximum-variation sampling approach resulting in increased knowledge about con- riences, and analysed using Grounded Theor y. ditions, enhanced coping and disease management, motivation, and support for behavioural change and 16 17 ecruitment r maintenance. We tried to include a broad variety of people with regard anonymous environment of online support groups The 4. to gender, age, social and ethnic background, disease is especially important for those who feel stigmatised severity and so on that would cover the diversity of illness and have difficulties talking about their condition; experiences. We used various recruitment strategies, more than half of the messages posted in online sup- 18 including newspaper ads and social media, and asked port groups provided or solicited emotional support. self-support groups, family doctors and gastroenterolo- Despite these positive findings, there is also some gists to inform possible participants about our project. We alarming research about the negative effects of social also used different wording in the ads targeting specific support. Patients reported feeling a loss of control groups of patients (eg, immigrants, people with less because of the need for assistance in daily struggles, diffi- severe symptoms etc). culties fulfilling the expectations of their friends and family, or uncertainty of people in their social network Data collection about how to address their disease, which can increase 19 The interview collection took place throughout Germany Some chronically ill patients their own uncertainties. from September 2011 to June 2012. AP and WH (sociolo- even complained about increasing conflicts with friends 20 gists and experienced in interviewing) conducted narra- or partners because of unwanted social support. tive face-to-face interviews with patients at their homes, There are several studies specifically focused on http://bmjopen.bmj.com/ during a stay at rehabilitation clinic or at the Depart- patients with IBD where they talk—in addition to other ment of General Practice in Göttingen, according to the things—about negative experiences with their social 3 7 patient’s preference. However, none of these studies had system- network. We asked the participants at the beginning of each atically investigated the possible negative effects of social interview simply to tell us about their experiences with support. By conducting a series of interviews with people the disease from the first time they noticed some health who suffer from IBD, we received the impression that problems. The participants were told that our research contacts with family, friends, colleagues or peers in face- - did not have any particular focus, only that we were inter to-face or online communication could also be a source on 8 May 2019 by guest. Protected by copyright. 21 ested in their personal experiences with the illness. This call also to look Katz et Following al of stress and strain. way, the participants had the opportunity to tell us what negative variables in their inflluence on IBD-QoL and at was important to them regarding their condition in their resiliency, we aimed to determine, on the basis of a large own words and according to their individual preferences sample of in-depth interviews, whether patients with IBD 23 et Palant al ). (for more details, see experienced negative effects from social support and if After these stories were finished, open-ended questions so, how these experiences can be categorised and which were asked to generate further illness narratives. The role the different sources of social support had played. additional interview guide was developed beforehand and was used to ask some additional questions about related issues such as practical strategies to cope with the illness, Meth s OD current problems, financial burdens because of the IBD, Context and setting information needs and suggestions for other patients. For this study, we examined interviews, which are simul- min on average. The interviews lasted approximately 90 taneously the basis for the German website project www. Field notes or memos (interviewer’s first reactions, tser fahr kran ungen. khei de, a part of the DIPEx Interna - impressions of the patient’s living situation and first org). dipexinternational. network tional (http://www. thoughts about the main topics for the participants) The websites contain video, audio and text interview 2 9 :e022642. doi:10.1136/bmjopen-2018-022642 Palant A, himmel W. 2019; BMJ Open

3 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from were made during and after the interview and were esults r used to enrich data analysis afterwards. Interviews were A total of 42 interviewees took part in the study. Their audiotaped and transcribed verbatim. Each participant average age was 42 (median; minimum: 18; maximum: 76); 54% of the interviewees were women. Twenty-five of received a copy of the transcribed interview and was the participants had CD, 15 suffered from UC and two asked to give us consent to use the interview on the from indeterminate colitis (UC/CD). Duration of illness project’s website and for scientific research such as this ranged from 5 to over 40 years ( table 1 ). study. Social support was a recurrent topic in every interview. Our participants spoke mostly about positive experiences Data analysis with their friends and family, other patients or colleagues The analysis started with ‘initial coding’ of the material, 24 and customers, especially if they showed respect and Simultaneously, the as usual for Grounded Theory. understanding and helped them, preferably in a relaxed authors wrote down their thoughts and possible connec- atmosphere. One of our interview partners told us, for tions within and between important topics in the inter - instance, that it helps him to be regularly asked about his views (‘memoing’). well-being and also that he is shown forbearance that not For the presentation of the interview material on everything is completed as fast as previously. the website, we then used the ‘OSOP’ (one sheet of 22 paper) technique, which requires the raters to note all weeks. And I was laid off work after my illness for 5 important issues from the ‘initial coding’ to one specific - seeing that I also have customers, I was deeply im topic on a single sheet of paper. This technique helps to pressed by their sympathy and that they enquired identify patterns and common themes within the data, to how I was, and also that they said: if it takes longer explore how the main topics are connected, and allows a now and then, or if anything is the matter, then that 22 deeper understanding of patient experiences. just is so... That I am acknowledged as a human be- After the launch of the new health issue ‘IBD’ on the ing and not just as someone who is paid and who then website in 2014, we started an in-depth analysis of the has to function accordingly. (ID 22, male, 54 years) interviews in 2015 and first explored the issue of food 23 view partners Nevertheless, from time to time, the inter and diet. During this analysis, we became aware of the also told us about unpleasant situations or conversations ambivalent role of social support for patients with IBD with members of their social network or people on the and decided to explore this issue in more detail in the internet. We examined these passages in the interviews following years, with a special focus on ‘negative effects’. closely and found patterns that are best represented in During the coding, we followed Prang and colleagues’ 6 two interrelated categories: (1) unwanted confronta- Since ‘negative effects of definition of social support. tion and (2) undesirable reactions, both with several social support’ was an ‘a priori’ theme, we coded the subcategories. components of the interviews relating to this ‘a priori’ http://bmjopen.bmj.com/ theme and grouped them into meaningful clusters, that nwanted confrontation u is, subthemes. The preliminary interpretations were regu- Confrontation with unwanted information by social contacts larly discussed during project meetings. Those discus- Some patients sometimes wished not to think about their sions helped us to recognise, formulate and refine our disease, at least from time to time. During such times, main category and subthemes, which are the basis for the they felt annoyed if family members, friends or other results of this study. was used as data indexing ti TLAS. A persons asked them about their condition. ID 31 did not software to help with the analysis. like being confronted with additional information by her To enhance the validity of our data analysis, we could on 8 May 2019 by guest. Protected by copyright. partner while trying not to think about her illness. This build on the support of an Advisory Board as part of an made her feel overwhelmed. 25 ‘audit trail’. This board consisted of experts within the respective module, including those suffering from the My husband also deeply cares about all this. Although health condition. The advisory board provided input on I have to say that it sometimes gets to be too much the literature review, ideas on key areas for sampling cate- and I tell him ‘I don’t want to listen to all this crap, gories, topics for the interview guideline and helped find leave me in peace’. (ID 31, female, 48 years) interview partners. Moreover, given the overwhelming Support groups were a good way to meet other people adoption of the positive role of social support, our receive tips about coping with the with similar conditions, approach can be characterised as a search for ‘discon- disease and get emotional support. Nevertheless, talking 25 firming evidence’ as Creswill and Miller put it and may extensively about the symptoms and therapies drew atten- thus protect us against proclivity to find conforming tion to the negative aspects of the disease and led to evidence. discomfort and anxiety, especially if the participants were just in remission. Patient and public involvement Patients and public were not involved in the development Self-support group(s), as I noticed, (are) dominating and writing of this study. life for so many people that it depressed me terribly. 3 Palant A, himmel W. :e022642. doi:10.1136/bmjopen-2018-022642 9 2019; BMJ Open

4 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from Sampling characteristics Table 1 Current state at time of the Year of Gender Marital status Employment interview Diagnosis Age ID diagnosis 30 Married Full time 2000 No gastrointestinal complaints CD 1 F 2 M Divorced Full time 1971 Some complaints CD 53 CD 31 F Single Part time 2009 Acute flare 3 UC 48 F Married Unemployed 2005 Acute flare 4 CD 5 F Married Retired 2000 No complaints 31 UC F Married Full time 2004 Acute flare 6 40 UC 30 M Single Full time 2005 No complaints 7 8 UC/CD F Single Full time 2007 Acute flare 31 9 52 F Married Unemployed 2004 Acute flare CD 10 CD 76 F Married Retired 1988 No complaints 11 CD M Single Unemployed 1997 Acute flare 36 UC M Single Full time 2006 No complaints 12 35 UC 72 M Married Retired 1960 No complaints 13 14 CD F Married Unemployed 2005 Acute flare 35 15 30 F Single Full time 1999 No complaints UC 16 CD/UC 31 M Single Unemployed 1997 Acute flare 17 UC M Single Student 2003 No complaints 24 18 43 M Single Full time 1998 No complaints UC 19 CD 18 M Single Student 2010 No complaints 20 CD 24 F Single Student 2010 Acute flare 2010 Full time Married UC No complaints 21 F 34 54 M Married Self-employed 2010 Some complaints UC 22 Married CD 60 M No complaints Full time 1992 23 24 CD 51 F Married Unemployed 1977 No complaints http://bmjopen.bmj.com/ 25 UC 42 M Single Self-employed 2009 No complaints No complaints 26 UC 55 M Single Retired 1984 27 CD M Single Retired 2009 Some complaints 72 28 45 F Single Full time 1981 Some complaints CD 29 UC 17 F Single Student 2009 No complaints 30 56 F Married Retired 1978 Some complaints CD Acute flare CD 48 F Married Unemployed 1995 31 on 8 May 2019 by guest. Protected by copyright. CD Acute flare 32 M 58 1998 Married Unemployed 33 UC M Single Unemployed 2007 Acute flare 57 34 40 F Single Full time 1998 Some complaints UC 35 CD 32 F Single Full time 2008 Some complaints 36 CD 28 M Single Full time 2000 Some complaints M 37 CD 60 2008 Married Self-employed Some complaints 38 CD F Single Self-employed 1985 Some complaints 40 39 53 F Single Full time 1976 Some complaints CD 40 CD 43 M Married Full time 2001 No complaints 41 CD 30 F Single Full time 1999 No complaints Full time Some complaints 42 CD 30 F Single 1999 CD, Crohn’s disease; UC, ulcerative colitis. 4 :e022642. doi:10.1136/bmjopen-2018-022642 BMJ Open 2019; 9 Palant A, himmel W.

5 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from At first sight, there are certainly times when this is all have had even more operations, and I have still better true for me as well, simply because it’s so pertinent. years) prescriptions.’ (ID 28, female, 45 But I refuse to be determined by this. I want to focus on my job, my family, my own life. I don’t feel like u ndesirable reactions letting this become so obsessive a subject. (ID 15, fe- Pity years) male, 30 Some interview partners did not want to be pitied, espe- Then I meet people who have the same illness, and cially during times when they did not suffer. Some devel- then we exchange news and views, and at times also oped strategies to prevent coming into social contact with more details about the illness. It’s then the main others or stopped talking about their disease entirely. subject, and there’s also these reconvalescence times ID 41 did not feel that she was strongly affected by her or self-support groups, what new medication is there, illness and, consequently, did not want people to think and what do you do in this situation and that, and that either and therefore feel pity for her. She wanted to they talk for more than an hour and a half about be treated normally. when they take which pills. That’s exhausting for me. It’s not as hard for me anymore. It’s harder when peo- years) (ID 39, female, 53 ple pity you. Me, I don’t need pity. (ID 41, female, years) 30 Confronta tion with a possible negative future The course of the illness was mostly uncertain. Most The same person explained later that she had the urge people with IBD hoped to get better with time. There- to ‘prove’ to other people that she did not feel restricted fore, it was difficult for them to hear from others about or ‘different’ because of her condition. Somehow, she possible health problems in the future. Instead of helpful needed be the same as before. answers, ID 21 was confronted with a possible change for the worse during a support group meeting. Information I met a pal from university recently, and he didn’t from other participants got her worried about her own know anything about this bag-thing (artificial anus). course of the disease. I didn’t want to shock him either, and I didn’t want him to pity me. But then we went out (in the evening) Then I asked all possible questions to do with the ill- and I told him, ‘There, I’m still as you knew me be- ness. And that was helpful, but also terrifying on oc- fore. I still step onto the dance floor and do my bit casion. (...) Not nice to see this soon what it might be and all’. This all didn’t change me in that respect. (ID years) like later. (ID 21, female, 34 41, female, 30 years) Even if you could find endless information about a The same person talked about her experiences at y hard for someone who is not disease online, it was ver the workplace. She also wanted to be treated normally a medical expert to know what information could be because she did not consider herself to be changed. http://bmjopen.bmj.com/ trusted. Reading about health-related information on the internet could therefore lead to more anxiety and s not be- Even the colleagues and my boss. And that’ uncertainty. cause I’m ashamed to have this, quite the contrary, I’m proud that I’m still me despite this bag. That I go Reading about the symptoms on the internet has up- out and have fun. You know, I’m not going to have set me slightly. (...) ‘cause I thought, ‘nope, these that taken away from me. But I did notice that many are individual cases, it doesn’t have to be like this for pity me, rather. And that sure is not something I want. you’. The real worries started actually when I expe- (ID 41, female, 30 years) rienced these boosts (in the illness) myself. (ID 12, on 8 May 2019 by guest. Protected by copyright. male, 35 years) Overreacting People Confrontation with people who are feeling much better than from the social network of our interview partners oneself sometimes expressed more concerns about the health of People in support groups sometimes tend to compare our participants than they did themselves. This could lead each other’s experiences about who was more successful to uncertainty and anxiety, especially if persons with IBD in coping with her or his condition. This group dynamic felt able to cope with their condition. Furthermore, social could lead to a type of competition instead of emotional support could be an additional burden. ID 12 described support. Because of this experience, ID 28 questioned how his family’s and friends’ concerns had a negative her own condition and why she was not getting better, effect on his health. Because persons in his social network which led to anxiety and made her quit the group. thought his condition was bad, he became more anxious. In this case, friends and family changed his self-awareness For myself, at some point I'll not participate in the and influenced his perceived health. group anymore ‘cause I don’t want to listen to (more repeated stories of) what someone attained for them- People who visited me started crying because they selves, like with veterans: I have even more wounds. I thought, ‘what’s the matter with him?’ and then this 5 Palant A, himmel W. :e022642. doi:10.1136/bmjopen-2018-022642 9 2019; BMJ Open

6 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from caught hold of me, too, so I started to be really afraid The interviewees perceived social support as negative, and panicky. (ID 12, male, 35 years) especially if they felt overwhelmed and/or if they had not asked for it. Similar experiences were reported in regard ID 36 did not suffer because of his disease. His rela - to social support at work or in online communities. tives were making a ‘big deal’ out of his illness, maybe even more than it should be. Nevertheless, he understood nwanted confrontation u them and thought this reaction was normal, but it both- The main focus of unwanted confrontation was on negative ered him anyway. experiences of our participants in face-to-face encoun- Relatives, when they learnt about this, it was of course ters and online support groups; for example, with unde- almost the end of the world. When I was 16 and saw sirable information about the illness or talking to other persons with IBD who were feeling much better or worse their reaction, one didn’t make such a fuss, to be quite honest. I took my medication and felt quite than the interviewees did. Both situations were consid- ered unpleasant in many cases. okay at that moment. Relatives are always the most upset, of course. (ID 36, male, 28 years) Confrontation with unwanted information from social contacts The reaction of her social circle to the illness made Information management is an important component ID 8 unhappy . She was disappointed because no one of coping with an illness. A big challenge for the infor - reacted the way she wanted. Emotional support was either mant is to recognise when information is desired or may extreme or missing. She experienced negative emotions, 26 That means that some be unhelpful or even harmful. so she came to the conclusion it was better not to talk patients and their social support collaborate in seeking about her condition. or avoiding information, while others find their informa- tion management strategies working at cross purposes, Very few people know what to make of this. When it’s meant. even when the suggestions from others are well explained to them, they either don’t take it seriously Different perceptions about an individual’s desire for at all or they are profoundly shocked. Either way is - information between the individual and potential infor somewhat over the top, in my view. Very few people mation providers (eg, healthcare providers or supportive know how to take that in a really cool way. (ID 8, fe- others) may result in behaviours that seem unresponsive male, 31 years) 26 or intrusive. Such experiences were common in our interviews. Some of our participants preferred to avoid ‘Positive’ stigma thinking about their disease, at least from time to time, Some interviewees complained about unwanted attention especially when they did not have any symptoms. During from friends after the diagnosis was made. ID 15 had the such times, they felt annoyed if family members, friends impression her friends showed interest in the disease but or other persons wanted to speak about their condition. not in the person who suffered from it. She did not want Another negative effect of talking about the disease is http://bmjopen.bmj.com/ special treatment because she did not want to be defined re-traumatisation as a result of participating in a support by her illness. group. Members have to repeatedly listen to other group members’ stories, which may reinforce negative feelings Well, I realised that some people who before at some 27 Our from the past or affect their current health status. party or other didn’t really think I was interesting at participants reported similar experiences when listening all then thought, fascinating, long-time illness. Not to others in face-to-face encounters or reading about it what I want at all. (ID 15, female, 30 years) in online support groups. Being exposed time and again to other people’s problems with their health made them on 8 May 2019 by guest. Protected by copyright. feel more anxious about their own well-being now and in C s I uss n IO D the future. The interviews with IBD patients for the website project kran many revealed de ungen. fahr tser positive khei Confrontation with a possible negative future episodes in regard to social support. Therefore, it was According to social comparison theory, originally 28 not the purpose of this study to reject the social support social comparison occurs authored by Festinger, hypothesis, nor did we intend to balance the positive between people with similar problems, such as chron- effects of social support against the negative ones. The ically ill people, helping them to evaluate their situa- 29 30 aim of the study was to take a closer look at possible people tion. In cases of ‘downward comparison’, negative effects of social support and to describe them in match themselves to persons who are doing worse than more detail. They can be summarised in two main catego- they are and thus increase self-esteem. This could result ries: (1) ‘unwanted confrontation’ and (2) ‘undesirable in feeling lucky that one is not in as bad a situation as reactions’. Both categories describe different aspects of the individual to whom the patient compares himself or 28 dissatisfying or sometimes even harmful encounters and herself and further help them to gain information on 30 relations of our participants with persons in their close None of how to avoid the same unfavourable situation. social environment, at work or with other peers online. our interviewees told us about feeling better because of 6 9 :e022642. doi:10.1136/bmjopen-2018-022642 Palant A, himmel W. 2019; BMJ Open

7 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from listening to peers who were feeling worse or described of others’ pitying attitude towards her, simultaneously 34 mainly negative experiences. However, they often spoke presenting herself as somebody who is strong-willed. about feeling anxiety and uncertainty in general when The striking dismissal of pity in close relationships or in work places was probably the most noticeable negative listening to other people in support groups. Even if this effect of social support in our interviews, including some- exchange was seen as helpful, they still started worrying about their own course of illness and a possible wors- what hostile reactions towards sympathy. Pity was seen as a ening in the future. Online, there are many unpleasant sign of weakness and being ‘different’, which for example led some participants to engage in somewhat reckless reports about experiences with IBD. Some of our partic- activities, just to prove that they did not change at all. ipants became very anxious about their own health and the possibilities of having the same problems in the Overreacting near future after reading various ‘horror stories’ on the Family members and friends often have concerns and internet, especially when they read about symptoms that questions related to chronic illnesses of their loved were familiar to them. 17 ones. Some of them may even try to help by offering Confrontation with people who are feeling much better than unsolicited and sometimes incorrect advice, for example, 17 Similar interac- related to diet or medication changes. oneself tions were seen as negative by some of our interview part- Another form of social comparison is ‘upward compar - ison’, that is, comparing oneself with a person who is ners. They told us about various encounters where people 30 It may be particularly helpful in (online) better off. in their social network did not seem to understand all the specifics about IBD and sometimes appraised the situ- support groups if the participants directly ask for informa- ation as very dramatic and therefore, in the opinion of tion about how to improve their own situation. However, the patients, as incorrect. Perceiving that others misun- seeing others who are better off than oneself could also generate feelings of pessimism and frustration because derstood IBD is a source of low mood which often led patients might feel that they could never be as well off to social withdrawal, as participants in a British interview 11 30 Several interview partners told us about as some of their peers. study reported. Some of our participants told us about similar experiences. When they met other patients conflicts with friends or family members where they tried who were feeling better compared with them, they experi- to look after them or impose help, especially if it was not enced more anxiety and uncertainty about why they were desired. Receiving unwanted social support was often not getting better. experienced as an attack on independence and self-de- termination. Therefore, several participants felt that they ndesirable reactions u were not in control, weak, needed help and thus were undesirable reactions contains reports The category of being dominated by the illness. from our participants about negative experiences with ‘Positive’ stigma their close social network. The interviewees especially http://bmjopen.bmj.com/ Young patients with cancer in a qualitative study by complained about not being treated ‘normally’, such as 35 being pitied or stigmatised. Furthermore, they sometimes al were frustrated when distant friends Iannarino et felt that their friends and families were either overre- offered support after hearing about their diagnosis. They acting or indifferent to their illness. believed that people did it not out of genuine care but to relieve a sense of guilt or to satisfy their curiosity about Pity the patients’ experiences with a serious illness. A similar Pity is a frequent negative experience reported by patients experience of a positive stigma was reported by one of our 31 Pity, similar to distrust, avoid- with chronic conditions. interview partners, a young woman. After the diagnosis, on 8 May 2019 by guest. Protected by copyright. ance or gossip, may also be a subtle form of stigmatisa- some people in her social network suddenly became 32 tion by family members and friends. Patients and other interested in her. Similar to being pitied, this occurrence sufferers fear pity because they do not want their part - made her feel different than her peers—a negative expe- ners to view them as ‘sickly’ and consequently leave the rience. Other participants also reported being singled out 33 relationship. The experience of pity may lead to social as a result of their illness and that these newly emerging isolation, alienation, lack of self-confidence, sadness helpers had not sincerely supported them in the past. or withdrawal, as well as the feeling of loneliness and restraints in conversations with other people on subjects Online communication 31 related to their condition. Enacted stigma in the form of Online support groups are becoming a popular resource pity was also observed in a study with young patients with for a wide variety of medical and psychosocial issues. 33 IBD. Several participants in this study gave examples of Receiving mutual social support can significantly improve 36 their friends, family or colleagues expressing sympathy Online support groups received health and well-being. towards them in a kindly manner, but this notion was similarly positive ratings than face-to-face support groups articulated in a way that ‘othered’ the persons with IBD and are more often used by younger, better educated 37 and wealthier people. It is possible to receive valuable and, by doing so, emphasised their differentness. One woman in this study talked about her explicit rejection support and advice at times when traditional sources of 7 9 :e022642. doi:10.1136/bmjopen-2018-022642 Palant A, himmel W. 2019; BMJ Open

8 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from 38 4 necessary societal skills. Online communication help are likely to be unavailable. An alternative or complimentary line of argument could be that negatively perceived social is of particular benefit to patients suffering from chronic support may be the reason for social withdrawal. health conditions with functional limitations that may 39 prevent them from attending regular meetings. Online It seems paradoxical to think of social support in nega- support groups also offer an opportunity to remain tive terms. Even if our participants discussed some nega- tive effects, the question arises whether social support can entirely anonymous, which may be helpful for promoting 38 40 really be negative—and, if so, why. For a possible expla- self-disclosure and reducing feelings of stigma. nation, we may apply Breithaupt’s thesis of the dark side Even if most studies focus on the benefits of online 43 44 support groups, there is growing evidence to the of empathy to the social support paradox. In his eyes, 16 Despite extensive searches in health, social contrary. empathy, as one of the chief motors of humanitarian aid, sciences, communication and informatics literature, is based on two factors: temporal change and the scene of 40 Eysenbach and colleagues, for example, failed to engagement. With the first factor, the empathiser expects find robust indications of the health benefits of virtual that the situation of the victim will change over time so communities and online support groups. Other studies that the empathiser can withdraw, either physically or mentally. ‘Scene of engagement’ means that empathy is go further and discuss negative aspects, even suggesting also, and perhaps even that internet communities can be harmful because they directed towards the victim and more, to the helper. Applying the first factor to social lead to attitude polarisation and increased prejudices 37 38 Some authors have argued support, we could say that those who give social support among their members. expect temporal change and may urge the sufferer to that the anonymity of online environments may lead to increased instances of disinhibited communication channel efforts in a direction they consider favourable. 38 involving aggressive and hostile exchanges. With the second factor, we could say that supporters Further - are interested in putting themselves in the limelight as more, concerns have also been raised over quality, hoaxes helpers who are appreciated by others due to their good and spam, encouragement of suicide and privacy issues 40 Similar experiences were very in internet groups. deeds. common among our participants, who used the internet Breithaupt goes a step further in illuminating the dark sides of empathy, namely, a tendency to radicalise to communicate with others or look for helpful sugges- conflict and a pleasure that the empathiser may derive tions. The interview partners told us about uncertainty from the pain or misfortune of others, a sort of ‘sadistic with regard to trustworthiness of the information found 43 44 Applied to social support, we could say that online and about reservations and anxiety about their empathy’. supporters tend to reinforce and radicalise the troubles exchanges with other people with IBD in support groups on the internet. and needs of the sufferers and do not realise if sufferers do not like talking about their troubles. Moreover, social Working conditions support can give birth to a sort of pleasure if the supporter Surprisingly, high levels of social support at work are tries to imagine the happiness of the one he or she helps, http://bmjopen.bmj.com/ correlated with high levels of emotional exhaustion, so that support is turned into a self-focused affair for the depersonalisation, long spells of absenteeism and high supporter. Even worse, as long as there is pain, suffering 41 levels of physical symptoms. The mechanisms behind - and need, the supporter derives a sense of self-impor these correlations remain unclear. Working with IBD was tance and a degree of pleasure from the suffering that he generally a challenge for most of our participants because or she may be inclined to reinforce. Of course, we did not of symptoms like diarrhoea and fatigue. In addition, not study the motives and actions of those who offer social everybody felt comfortable telling his or her coworkers support, but if Breithaupt’s empathy thesis is also true about the disease. People with IBD tend to be afraid for social support, the participants in our study may have on 8 May 2019 by guest. Protected by copyright. of losing their job or being made fun of at work, even experienced, at least from time to time, the dark sides 42 Our data indicate that—in more than in social contexts. of social support as a negative dynamic that puts them some cases—social support was the reason for these fears under pressure. and experiences. For example, some of our participants complained about coworkers being too compassionate Practical implications and forthcoming. Similar to some experiences with social Our findings could help medical professionals as well as friends, family members, partners and peers of persons support from friends and family, social support at work with IBD to become more sensitive to the dark sides of was associated with feelings of loss of control or not being able to handle the situation, not being the same person as social support. While many of our participants found social support to be a positive factor, others told us about before, or even not being ‘normal’ anymore. the negative effects as well. The accounts of our partic- Dark side of social support ipants can help people in their social environment to A usual line of argument in the case of IBD is that avoid- better recognise and avoid offering unwanted informa- ance behaviour, due to incontinence, stress, fatigue and tion or other undesirable forms of support that could other problems, leads to social isolation and—as a conse- complicate the attempts of patients with IBD to adjust quence—to feelings of social inadequacy and a lack of to their illness. For example, possible supporters should 8 9 :e022642. doi:10.1136/bmjopen-2018-022642 Palant A, himmel W. 2019; BMJ Open

9 Open access BMJ Open: first published as 10.1136/bmjopen-2018-022642 on 21 January 2019. Downloaded from ask themselves some questions before offering support desired. Therefore, some of them developed strategies to (eg, will my support increase the feeling of being ill; will prevent coming into social contact with others or stopped talking about their disease entirely. This may lead to fewer my support enhance the feeling to be different; is my support ‘egoistic’?). Vice versa, people with IBD should social contacts and even deteriorating health. The results not feel pressurised to look for social support as the only of this study could be used to encourage persons with IBD to voice their support preferences to their friends, and single way to successful coping and they should not family, coworkers or even peers in face-to-face and online be blamed if they keep some distance to others, at least from time to time. However, patients may have problems support groups. Helping individuals participate more to follow these recommendations since it is known that effectively in difficult conversations could empower them they usually show extreme social agreement and low level to better take advantage of the assistance available to them 45 through close relationships. Furthermore, doctors and of assertiveness in interpersonal contacts. This may even be a further reason why they perceive social support often allied health personnel should inform family members of as negative. So, health providers and others should help possible unwanted effects from social support. people with IBD to become more assertive, that is, to be WH conceived and designed the study. AP and WH AP and Contributors able to stand up for own wishes in a calm and positive way participated in the acquisition, analysis and interpretation of data. AP drafted a and thus to protect themselves against negative forms of first version of the manuscript. AP and WH critically reviewed the manuscript and social support. approved this version to be published. This work was supported by a research grant from the German sta tutory Funding s trengths and limitations of the study pension insurance scheme (Deutsche Rentenversicherung Bund); research grant The most common critique points of qualitative research no. 0421-FSCP-Z139. are the possible influence of the personality and the Deutsche Rentenversicherung Bund had no further involvement in the Disclaimer stud y. training of the researcher on the data collection and anal- ysis as well as the small number of participants. Both argu- lared. None dec Competing interests ments do apply to our study. We tried to exclude personal Patient consent Obtained. biases and idiosyncrasies when selecting the quotes or Ethical a thics approval e pproval received from the local ethics committee of the interpreting the data by working in an interdisciplinary University Medical Center Göttingen (no. 17/1/07). team consisting of medical doctors, a psychologist and Not commissioned; externally peer reviewed. Provenance and peer review sociologists. No additional da ta are available. Data sharing statement A selection bias has to be discussed. Since one aim of This is an open access article distributed in accordance with the Open access our website project was to publish the interviews or parts Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which of them on www. kran de, some people ungen. fahr khei tser permits others to distribute, remix, adapt, build upon this work non-commercially, addressed via advertisements in newspapers, online and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use forums and so on might have considered this an argu- by- licenses/ 4. org/ creativecommons. nc/ 0/. is non-commercial. See: http:// ment to decline. It is possible that these decliners have http://bmjopen.bmj.com/ certain characteristics and experiences, for example, very negative or positive experiences with social support that es r e C F eren are under-represented in our interviews. TP, Silva KDS, 1. . Inflammatory Santos RMD, Carvalho A et al As for the possible strengths of this study, we believe bowel disease: outpatient treatment profile. Arq Gastroenterol 2017;54:96–100. that the recruitment, using a maximum variation method, . Epidemiology and et al -Rousseau C, Seksik P, Cosnes J, Gower 2. allowed us to collect and to show a broad range of expe- natural history of inflammatory bowel diseases. Gastroenterology riences of different people with IBD. Additionally, the 2011;140:1785–94. 3. Sewitch et al . Psychological distress, MJ, Abrahamowicz M, Bitton A, - open-ended narrative approach in conducting the inter on 8 May 2019 by guest. Protected by copyright. social support, and disease activity in patients with inflammatory views allowed the participants to talk about and empha- bowel disease. Am J Gastroenterol 2001;96:1470–9. 4. fiths J, Lovell K. Understanding the health and social Kemp K, Grif sise the issues that are important to them, which would care needs of people living with IBD: a meta-synthesis of the not have been addressed in a quantitative study. There- 2012;18:6240–9. World J Gastroenterol evidence. fore, we were able to see the importance of the negative . Effect of social support and coping styles 5. Mao P , Luo A, Yang J, et al on the stress and mental health in relatives of patients with traumatic effects of social support—a topic that has not received brain injury. 2015;40:303–10. Zhong Nan Da Xue Xue Bao Yi Xue Ban much attention in research. Prang KH, Ber 6. ecki-Gisolf J, Newnam S. Recovery from musculoskeletal injury: the role of social support following a transport accident. 2015;13:97. Health Qual Life Outcomes 7. Oliveira S, Zaltman C, Elia C, et al . Quality-of-life measurement in patients with inflammatory bowel disease receiving social support. O IO n C lus C n Inflamm Bowel Dis 2007;13:470–4. To the best of our knowledge, this was the first qualitative ang J, Chen Y, Tan C, . Family functioning, social support, and 8. W et al study to specifically examine the negative effects of social Int J Soc Psychiatry quality of life for patients with anxiety disorder. 2016;62:5–11. support in patients with IBD in detail. Judging from the Cr 9. . Do positive or et al oezen S, Picavet HS, Haveman-Nies A, experiences of our participants, social support sometimes negative experiences of social support relate to current and future health? Results from the Doetinchem Cohort Study. BMC Public has a negative impact on people with IBD. Furthermore, 2012;12:65. Health our participants complained about not getting the reac- 10. Guruge S, Thomson MS, Geor et al ge U, . Social support, social conflict, and immigrant women's mental health in a Canadian tions and support from their social network that they 9 Palant A, himmel W. 2019; 9 BMJ Open :e022642. doi:10.1136/bmjopen-2018-022642

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