Discussion: Reflections on Online Support Groups

Computers in Human Behavior 29 (2013) 1695–1701

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Com puters in Human Behavior

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Nurturing health-related online support groups: Exploring the experiences of patient moderators

0747-5632/$ - see front matter � 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.chb.2013.02.003

⇑ Corresponding author. Tel.: +44 115 84 66642; fax: +44 115 84 66625. E-mail addresses: [email protected] (N.S. Coulson), r.l.shaw@aston.

ac.uk (R.L. Shaw). 1 Tel.: +44 121 2044050.

Neil S. Coulson a,⇑, Rachel L. Shaw b,1 a Institute of Work, Health & Organisations, International House, Level B, University of Nottingham, Jubilee Campus, Wollaton Road, Nottingham NG8 1BB, UK b School of Life & Health Sciences, Aston University, Birmingham B4 7ET, UK

a r t i c l e i n f o

Article history: Available online 15 March 2013

Keywords: Empowerment Moderators Online support groups Support Thematic analysis

a b s t r a c t

The aim of this study was to examine the views of moderators across a diverse and geographi cally broad range of online support groups about their moderator experiences and to explore both the personal ben- efits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation . They felt empowered by helping others and learned more about the condition through accessing the ‘‘communal brain’’. Some felt the group aided patients’ access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagemen t, trust, organisation skills, comp assion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike.

� 2013 Elsevier Ltd. All rights reserved.

1. Introduction

As access to the Internet has dramatically increased, particu- larly in the last decade (Internet World Stats, 2012 ), individuals living with a range of health-re lated problems have found new opportunities to come together for the purposes of information and advice sharing as well as mutual support (Powell, Darvell, & Gray, 2003; Walther & Boyd, 2002 ). Furthermor e, a number of unique characteri stics of Internet-m ediated communicati on have arguably underpinned a rise in the popularity of online support groups (White & Dorman, 2001 ). For example, online support groups are not limited by geographical or temporal restrictions as might be the case for a face-to-face group (Braithwaite, Waldron, & Finn, 1999 ). In addition, there is the potential for a much larger and diverse group compositi on (Wright & Bell, 2003), which in turn allows members to potentially access a wider variety of information, advice and support (Coulson & Knibb, 2007). Online support group members may also benefit from being able to disclose personal information (Suler, 2004 ) and discuss sen- sitive or embarrassing issues (Buchanan & Coulson, 2007 ) with less

fear of judgment or risk (Caplan, 2003; Wright, 2000 ) as well as being able to develop more supportive relationship s as a result of reduced visible social status cues, such as age, gender or ethnicity (King & Moreggi, 1998; Madara, 1997 ).

To date, the vast majority of studies which have considered on- line support groups have sought to examine the online experiences of members either by analysing the nature of the communication which takes place (Blank, Schmidt, Vangsness, Monteiro, & Santagata, 2010 ) or by asking them directly (e.g. Letorneau et al., 2012). This work has revealed a number of potentially important therapeuti c processes which may benefit members and has been cited as evidence for the efficacy of health related online support groups (Coulson & Malik, 2012 ). For example, members have been shown to be more informed, more in control, better able to accept and manage their illness, more confident in communicating with health professional s as well as experienci ng improvements in self-esteem and general well-being (Bartlett & Coulson, 2011; Mo & Coulson, 2012; van Uden-Kraan et al., 2008; Wright & Bell, 2003). However, online support groups are not without their limi- tations. For example, incorrect or misleading information, member conflict and disagreements , reading ‘‘horror’’ stories as well as the absence of physical connections with other members have all been described as having a negative impact on group members (Attard & Coulson, 2012; Esquivel, Meric-Bernstam , & Bernstam, 2006; Han & Belcher, 2001; Hoybye, Johansen, & Tjornhoj-Th omsen, 2005; Malik & Coulson, 2010 ).

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To date, little attention has been given to understa nding the fac- tors which may contribute to the success (or not) of online support groups during the course of their existence. For example, the chal- lenges of setting up and facilitating member interaction in a newly established group may differ from the challenges from groups which have been in existence for a longer period of time. One ave- nue through which we may explore the possible contributory fac- tors underpinning the success (or not) of an online support group is through engaging with those individuals (usually patients) who moderate it. To date, there has been limited attention given to exploring the views of health-related online support group moder- ators and their role and function. One exception is that of van Uden-Kraan , Drossaert, Taal, Seydel, and van de Laar (2010) who interviewed 23 Dutch patients involved with three types of health-relat ed online support group (i.e. breast cancer, fibromyal- gia and arthritis), about their motives for setting up a support group and online experiences . The findings described how group moderators had a range of intrinsic as well as altruistic motives for starting an online group. In addition, a range of factors were identified in the process of setting up and initiation of an online support group. Whilst this study is important in helping explore the views of moderators, the range of groups included is limited to only three types of physical illness, restricted to the Dutch con- text and does not include representat ion from groups addressing mental health problems. As a consequence, these issues may limit the extent to which we can generalise across different types of sup- port groups as well as understand ing the processes important in helping shape the online support group once it has been initially set up.

1.1. Aims

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved.

2. Methods

2.1. Procedure

Participants to the study were recruited through individual invitations sent on behalf of the research team. Those moderato rs who wished to participate in the study were directed to an online questionnair e hosted by SurveyMonkey (an online survey and questionnair e tool), where they were provided with detailed infor- mation about the nature of the project and their rights as a re- search participant. In order to proceed, participants had to give their consent to be part of the study. In addition, they were asked to give permission to quote from their responses in the dissemina- tion of the findings however, they could engage with the study regardless of whether they agreed to this or not. All participants subsequent ly agreed to this request. Next, each participant was asked to provide a six digit password in all correspondenc e with the research team or to withdraw their data from the study. Each participant was asked to disclose their age and gender. In addition, they were asked to indicate the online support group through which they had accessed the study and provide details of their role as a moderator including: number of members, length of time as group moderator, whether they are the moderator of any other on- line group as well as details about the registration procedure for each group and how a member can read and post to the group. Next, participa nts were asked to respond to a series of open-ended questions which were specifically concerne d with their moderator role. For those participants who identified themselves as the origi-

nal creator of the group (N = 11), they were asked to further ex- plain the reasons for creating the forum and the processes involved in doing so including any challenges . Following on from this, all participa nts were asked whether they moderated their on- line group alone or with others, the amount of time it takes up weekly, the personal benefits arising from their role as well as ben- efits for members, any negative aspects to the role and what they felt makes for a successful online support group, including advice for others thinking about starting one.

2.2. Participan t characteristics

In total, 33 online support group moderators completed the questionnai re including 25 females and six males (two did not re- port their gender; participants are referred to as participant num- bers, e.g. P1, P2, etc.). Participants ages ranged from 20 to 70 years (Mean = 48.48). The size of the groups which participants moder- ated ranged from 4 to 33,000 with their length of service in this role ranging from 1 to 14 years (Mean = 6.27). Nineteen partici- pants reported that they had not previously or were not currently moderating another health-relat ed online support group. Since some groups had multiple moderators which chose to participate in the study, the total number of unique health-relat ed online sup- port groups represented was twenty-four. A broad range of health and illness-re lated topics were represented including the following examples : diabetes, mouth cancer, thyroid disorders, neuromus cu- lar disorders, Down’s syndrom e, breast cancer, obsessive compul- sive disorder, sexual assault and arthritis.

2.3. Data analysis

The responses to the open-ended questions were analysed using inductive thematic analysis by the study authors, following the guidelines set out by Braun and Clarke (2006). The entire set of responses across all respondents was read several times by each coder in order to become familiar with the data and identify poten- tial emerging themes. Following on from this, the coders discussed their analysis and together developed a thematic framewor k which was then used to code the responses independen tly. Following fur- ther discussion, the coders agreed a set of themes and data were identified to represent each of these.

3. Results

Results are reported by theme with verbatim data extracts which describe the experience and life cycle of the online forum from the moderato rs’ perspectives . Themes identified are emer- gence, empowermen t, and nurturing.

3.1. Emergence

This theme reveals reasons cited for setting up the group. A sim- ple reason for setting up a group was a felt need for it because no existing forum catered for people with a particular condition (addi- tional data extracts are in Box 1):

Because at the time there just weren’t any good support groups on line for those with Thyroid disorders . I had found help myself on line and chose to help others (P2).

Others initiated the forums to help educate people living with sometimes rare conditions, for example P6 described setting up an online forum to enable people to connect with each other be- tween face-to face support meetings . A primary goal was to edu- cate patients about treatments:

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The online support community was founded originally to pro- vide opportunities for members of an in person support group to be in contact between meetings . We received many queries from others who were not participants in our original group, and decided to open the forum to ‘‘anyone living with uveitis who wished to participa te. Our primary mission was to educate patients about ‘‘modern’’ treatments for this rare disease, and to provide opportunities for mutual support (P6).

Others valued education and were either specialists themselves or had access to people who could provide expert advice:

Since we are providing support to a community of adults, par- ents, and children with a serious medical illness that affects vision, it has been invaluable to have a specialist physician advi- sor who can provide advice when asked (P12).

We know that increasing access to information can be beneficial in helping people manage their condition over time, particularly when rare or a number of treatment options are available.

In P6’s account (see Box 1) we also see that ensuring people do not feel isolated is a key motivator for setting up the forum. Con- necting with others experienci ng the same condition and feeling validated by them is something moderators felt was important in the emerging identity of the online communi ty:

Support first and foremost . . .and the knowledge that they are not the only ones out there with similar problems. A lot of peo- ple do not like face to face support (P24).

In fact, sharing experiences and caring for others represented strong drivers for the emergence of online forums and created a space where people living with the same condition could interact. Moderators ’ responses to a question about what members gain from participatin g also revealed that this feature was central to the ethos of the group:

I decided to set up an online support group so that survivors could support each other (P9).

This theme has shown largely altruistic reasons for setting up the online forums. Having been a patient in need of information and support themselves, many of these moderators set up forums to provide links and circulate valuable health information to indi- viduals who otherwise may have been isolated and ignorant of treatment options. They also created a communal space for user interaction and peer support.

3.2. Empowermen t

Here we describe the functions of the group from the modera- tors’ perspectives but also gain insight into what moderato rs be- lieve patients might gain from participatio n in the forum. Several moderators mentioned experienci ng learning and growth through helping others:

Being a moderator has helped me a great deal with my own healing. It has allowed me to turn a horrible experience into something positive (P18).

Acting as moderato r constituted ‘helper-therap y’ for some which afforded them a sense of gratitude for being able to give something back and offer others the benefit of their experience:

This group helped me tremendously when I was diagnose d and I wanted to give somethin g back. I am a web designer, so the moderation duties fit well with my skills (P7).

There is a clear link here to emergence above; the moderato rs’ motivation for setting up or becoming involved in the manage- ment of forums fosters their own sense of empowerm ent. Hav-

ing dealt with their own diagnosis as a patient and learned from it these moderators describe the value in being able to sup- port others. Becoming an expert in their own condition and offering support to others is empowerin g because it provides an opportunity for moderators to share their received wisdom and prevent others from ‘suffering in silence’ the way they had to. This confers a feeling of competence to moderators which in turn is experienced as gratitude that they are able to give somethin g back.

Moderators also reported that engaging regularly with the on- line group enabled them to learn more about their condition, to ac- cess a ‘‘communal brain’’ (P3; further data are presented in Box 2). This sense of the online forum as a resource hub is further illus- trated by moderators’ perception of it as an aid to help patients make treatment decisions along the care pathway. Some described the forum as boosting members’ confidence to communicate effec- tively with health care professio nals while others saw it as a gate- keeper to accessing services of which patients may not have been otherwis e aware:

Welcome all newcomers and give advice openly – real advice rather than trying to couch answers in medical ‘‘speak’’ that confuses people new to the disease. [..] Give real advice and give out net addresse s where they can also get more information . Don’t be afraid to give out advice that could be useful while advising members to discuss everything with their doctors and also to do research on their own (P4).

P4’s account shows that moderators need to be careful to con- vey a balanced approach between using their own experience to give advice and ensuring that members retain connections with the health services. The importance of accessing ‘‘traditional’’ sources of support provided by health care professional s also be- came apparent through P8’s concerns that some members may de- pend too much on the online support group and instead of using it to help take responsibili ty for managing their condition depended on it in a passive way:

People don’t understand what they read, they are intellectually lazy and want everything spoon fed to them. Far too many of the members complain about their chronic pain but when we show them that exercise, gait-training and massage work better than analgesics, they become angry. There is a profound sense of helplessnes s that pervades the group. [..] It’s almost as if most of the members resent the fact that they can help themselves. They appear to want external solutions (P8).

The experience of this moderator has led to disillusionmen t with the group’s disengag ement with health care services and self-manage ment advice. Members are described as ‘‘lazy’’ and preferrin g a ‘‘quick fix’’ pill rather than making an effort to engage in constructive activities. There is a tension here between the for- um being perceived as a supportive community which acts as a springboard for further learning and it becoming a crutch for peo- ple unable or unwilling to be proactive in self-managing their con- dition. While for most moderators the online forums offer a means of empowerment, there is a need to be cautious that they do not prevent patients from engaging with traditional, local health services.

3.3. Nurturing

In the final theme we discover what is required to nurture the forum and ensure it functions in an appropriate manner. Modera- tors were asked about their technical abilities to set up the forum initially. Several mentioned they benefited from free, open-acces s platforms , e.g. AOL, Yahoo, Google, and some forums were

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developed in association with existing websites. Some were nov- ices (‘‘internet stupid’’ P6) while others described themselves as ‘‘internet savvy’’ (P9). Once up and running our participa nts described soon learning that being a moderator took time (see Box 3). There was also a clear message that moderators need to set up boundaries in terms of determining what they are willing to give to the site in the context of (sometimes) their own daily experience as a patient:

There are times I feel this is not helping me move through stages I need to move through to live with this disease, yet not be so involved with it that it takes so much of my mental ability and time that I could be spending getting on with thing [sic] not involved with this bone disease. Personal growth for the owner/moder ators need to be kept in mind (P1).

Arguably it is the moderator’s own responsibility to set ground rules to protect their own well-being but P1’s experience demon- strates how easy it can become overwhelming. Indeed, these mod- erators advise anyone thinking of taking on this role to think carefully before doing so and to actively engage in ‘‘self-care’’ (P22). This notion of ‘‘self-care’’ is particularly important for this group because so many of them are patients themselves. Further- more, moderators told us that for those who have the condition themselves and who are therefore likely to have been through the same sorts of challenges that their members now face, it is imperative that they develop an emotional resilience:

Be prepared to take some heat on the tough calls. Members don’t like being told they can’t do somethin g. Don’t take insults personally (P18).

Part of the ‘‘armour’’ these moderators wear comes in the form of establishing clear rules of engagement and enforcing them. Dealing with ‘‘spam’’ (P10) and being able to spot ‘‘trolls’’ (P23) are early lessons. One participa nt said moderating was ‘‘like being a parent, you have to watch for someone breaking the rules’’ (26) and others gave the impressi on that dealing with ‘‘nasty emails’’ (P23) was commonpla ce.

A very clear message portrayed by these moderators was that they wanted to create a safe space for their members and that they were careful to nurture their group in order to protect this feeling of safety. To achieve this, moderators described a number of factors which must be in place, many of which come under the jurisdiction of the moderator to maintain:

Trust, confidentiality, fairness and courtesy . Many of newest members are scared and confused. They need to feel safe in ask- ing questions without being judged or criticized (P7).

Moderators also described their nurturing role through their ability to ‘‘listen and give support and love’’ (P6) and offer ‘‘com- passion, organisation and, patience’’ (P19). From these accounts it seems that creating a safe environment for members demands a balance between the characteristics listed above and clear guid- ance on appropriate conduct:

Participants must feel safe. To accomplish that, you must attempt to strike a balance between rule implementation while also allowing free expression. Moderators must always be empathic and compassionate . We must always remember that there are real people on the other side of the screen who deserve to be treated kindly (P23).

Kindness is a salient theme among these moderators’ views about what is important in creating and managing a healthy online forum. This relates back to the first theme where we saw modera- tors setting up online groups through a desire to help others by sharing experiences and caring for them. The second theme

showed us that moderators too gain from this experience and as many of them are patients themselves, it seems that whether a moderato r or a member be, online forums for health condition s, when managed effectively, are a source for patient empowerm ent.

4. Discussion

The aim of this study was to examine the views of moderators of a range of health-relat ed online support groups about their mod- erator experiences and to explore both the personal benefits as well as challenges involved in undertak ing their role.

Our findings describe a range of altruistic motives which appear to underpin the decision to become a moderator and to support the group and its members. It was common for group moderato rs to personall y value the opportun ity to both offer support to others as well as receive it. Furthermore, for some, their moderato r role allowed them a means through which they could ‘‘give back’’ to the group. Within the literature, it has been widely acknowled ged that the opportunity to offer as well as receive support is an impor- tant therapeutic process which is integral to support groups (Reisman, 1965 ). Indeed, this is known as the helper-ther apy prin- ciple, where a member may feel an increased sense of self-efficacy and self-esteem through the process of helping others. In addition, this form of altruistic behaviour has also been shown to help indi- viduals limit the extent to which they may be ruminating about their own problems (Shaw, Yeob Han, Hawkins, Mctavish, & Gustafson, 2008 ). Our findings are consistent with a growing body of literature which supports the notion of the helper-therap y prin- ciple in the context of health-relat ed online support groups (Shaw et al., 2008; Winefield, 2006 ). In addition to the personal sense of gratification which moderators gain, offering support to others is also an important mechanis m for helping sustain a healthy and productive online community. Lampel and Bhalla (2007) have argued that more ‘experien ced’ or veteran members may feel espe- cially motivated by the need to connect to and maintain the communi ty, as opposed to new group members who may derive benefit by sharing their own experiences .

Our sample of moderato rs also described a range of ways through which group participants might benefit through interac- tion and mutual support online. In particular, the group was con- sidered a ‘‘communal brain’’ and illustrates the potential for members to access a wealth of both factual and experiential infor- mation, advice and support. Indeed, there are several theoretical reasons as to why online support groups may help individuals cope better with illness. For example, Roter and Hall (1997) argue using their patient-comm unication theory that access to information may lead to changes in task behaviou r. Thus, access to informat ion from members of an online support group may influence a pa- tient’s behaviou r in relation to how they attempt to manage their illness. Furthermore, accordin g to Bandura (1977), access to infor- mation may also help participants’ confidence in their ability to manage their condition.

According to moderato rs, through engaging with the group and connectin g to similar others, members were being ‘empowered’ and benefiting in a number of important ways, such as increased con- fidence in accessing health services, interacting with health profes- sionals and illness management. These findings are consistent with recent developments within the online support group literature which has considered the active online processes and subsequent outcome s from an empowerm ent perspective. Whilst the concept of empowerment is arguably complex and multidimensiona l, it broadly refers to the process through which individuals, organisa- tions and communitie s gain control and mastery over issues that concern them. In the context of patient empowerment, it has been described as enhanced communication between the patient and

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health care professionals, a greater ability to self-manage the con- dition as well as patients’ autonomy and right to take responsibil- ity for their own care and treatment-rela ted decisions (Anderson & Funnel, 2010 ). Furthermore, emphasis is placed on patients’ need to obtain information about their disease and available treatment options and other aspects of health care, which is necessary to en- able their active participatio n in treatment decision-making. In- creased knowledge and participa tion in making important decisions about their health-care can in turn enhance patients’ sense of control over their illness and life in general (Campbell, Coulson, & Buchanan, 2013; Mo & Coulson, 2012; van Uden-Kraan et al., 2008 ).

However, our findings also suggest that this is a ‘‘double edged sword’’ in that the support offered through the group may, for some, lead to ‘‘laziness’’ and unwillingne ss to engage with tradi- tional forms of healthcare. Thus, it seems that participatio n on on- line support groups may also have a disempo wering impact on some members. However , thus far comparative ly less empirica l re- search has been undertak en which explores the negative conse- quences of online support group participation. Indeed, in patient surveys of negative consequences of participatio n (e.g. Malik & Coulson, 2010 ), these problems have not been identified. However , this may be because members who respond to online surveys wish to present themselves in a positive light and therefore do not acknowledge that their online behaviour may not be helpful in managing their illness. This suggests that moderato rs may provide a unique insight into the impact of online support group participa- tion and provide a means through which researche rs can extend their understanding of this increasingly popular online phenomeno n.

Finally, our findings also identify a number of challenges to the moderation role and how these can be managed. A notion of resil- ience was evident and suggests that over time moderators may equip themselves with the necessary skills required to effectively undertake the role. Our findings suggest that the experience of moderation , for those who have developed these personal skills and qualities, may be more manageable and less overwhe lming.

Going forward, as the number of online support groups contin- ues to increase as well as a growing number of patients choosing to access them for information , advice and support, more research is needed to understa nd the personal attributes, skills and resources required to effectively undertak e the moderator role. In particular , researchers need to explore what factors underpin the develop- ment of personal resilience in moderators. The findings of such fu- ture research may be useful in terms of providing support and guidance for voluntee r patients wishing to undertak e a moderator function.

Whilst this study has identified a number of important factors in the developmen t, facilitation and maintenanc e of health-re lated online support groups, there are a number of limitations which should be considered. First of all, this was a retrospective study which required participants to reflect on their moderation role. This approach may have introduced bias in terms of which experi- ences were salient at the time of participating in the study. Secondly, whilst our study did include a broader array of health- related topics, there is still a relative bias towards physical condi- tions and future work may seek to extend further the number and type of online support groups participa ting.

4.1. Conclusions

Online forums for health are increasingly popular. They provide information , support, and an interactive space for members to share experiences and advice. Many moderato rs are patients them- selves who have become expert in a condition through living with it. This is beneficial to members because it provides access to infor-

mation which can help boost their confidence in self-managing their condition ; it is beneficial to moderators as ‘helping- therapy’ which develops their sense of mastery in managing their condition. In this way, moderating an online forum can enable the moderator and users to proactively manage their condition, to deal more effectively with health care professionals and to better access health care services available to them. Moderators themselv es are encouraged to practise self-care, but gratified by the sense of reciproci ty in giving something back.

Box 1: Theme of emergen ce

� There was no support and no one to talk to about how I felt (P5).

� Because at the time there just weren’t any good support groups on line for those with Thyroid disorders. I had

found help myself on line and chose to help others (P2).

� I’m responsib le for setting up my form [sic] on Shaz’s Ost- omy Pages. I set it up over 10 years ago because, at that

time, there was only one other forum I could find, that sup-

ported ostomates and those going through surgery (P10).

� The online support community was founded originally to provide opportunities for members of an in person sup-

port group to be in contact between meetings. We

received many queries from others who were not partici-

pants in our original group, and decided to open the

forum to ‘‘anyone living with uveitis who wished to partic-

ipate. Our primary mission was to educate patients about

‘‘modern’’ treatments for this rare disease, and to provide

opportunities for mutual support (P6).

� In 1998, there was little on line layman info for the bone disease of osteonecrosis that generally hits younger folks

20–45 years old. It’s not an easy to understand disease. I

set it up to facilitate letting others know they are not alone,

also to understand the disease physiologically since I am a

clinical laboratory medical scientists [sic] and teach at the

PhD level. Also, it was important to form a network of

where to direct group members to MD’s who are known

to be better with this disease than others (P1).

� Since we are providing support to a commun ity of adults, parents, and children with a serious medical illness that

affects vision, it has been invaluabl e to have a specialist

physician advisor who can provide advice when asked

(P12).

� They get validation for there [sic] feelings, and hurts which can be quiet [sic] hard to come by in the general commu-

nity – however online, without boarders [sic] and distance

to limit the ability to communicate , it allows for members

to much more effective ly reach and community [sic] with

others like themselves. It also allows for a high level of

autoimmunity which offline group by there [sic] very nat-

ure are not able to offer (P17).

� Support first and foremost . . . and the knowled ge that they’re not the only ones out there with similar problems.

A lot of people do not like face to face support (P24).

� There was no place currently for people with PA to share thoughts, feelings, experiences and information (P4).

� I decided to set up an online support group so that survi- vors could support each other (P9).

� Support. Understand ing. The ability to talk about things that they may not be able to talk about in a one-to-one sit-

uation. Informati on and suggestions regarding different

ways of coping. Companion ship (P21).

Human Behavior 29 (2013) 1695–1701

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Box 2: Theme of empowe rment

� Being a moderator has helped me a great deal with my own healing. It has allowed me to turn a horrible experi-

ence into something positive (P18).

� Encourag es my own personal understand ing of my own issues and helps me to understand the importance of

reaching out to others. It has boosted my self esteem

and the knowled ge that I am helping to contribute to a

good cause helps me to feel positive about myself. It has

helped me to find my voice regarding my own issues

(P21).

� Gratification in being able to help others with myasthenia gravis (P4).

� This group helped me tremendously when I was diag- nosed and I wanted to give something back. I am a web

designer , so the moderation duties fit well with my skills

(P7).

� Personal benefits I have derived is seeing how much brighter group members are now the web has so much

more informati on on it than back in the mid to end 90s. I

also derive personal satisfaction anytime I hear, I am so

glad to have found this group. I thought I would never

meet anyone who understood what it is I face and am

going through’ (P1).

� In this we [sic] have multiple perspect ives and points of view to many of the questions offered to the group (P3).

� I have learned a lot about my disease from other members (P27).

� Better understanding of the needs of patients and cares (P29).

� A place, too, where you learn something that would be of interest to the group, you can go share with them, contrib-

ute to the communal brain (P3).

� There are very few orthopedist s [sic] who treat osteone- crosis. The average orthopod prefers to just replace the

joints. Members of this group learn about the handful of

surgeons who actively attempt to save joints and to treat

the osteonecrosi s. They also learn about the possible

causes of osteonecrosis and of possible non-surgica l

treatments for idiopathic osteonecrosi s (P8).

� Welcome all newcomers and give advice openly – real advice rather than trying to couch answers in medical

‘‘speak’’ that confuses people new to the disease. [..] Give

real advice and give out net addresses where they can also

get more information. Don’t be afraid to give out advice

that could be useful while advising members to discuss

everything with their doctors and also to do research on

their own (P4).

� People don’t understan d what they read, they are intellec- tually lazy and want everything spoon-fe d to them. Far too

many of the members complain about their chronic pain

but when we show them that exercise, gait-training and

massage work better than analgesics, they become angry.

There is a profound sense of helplessn ess that pervades

the group. [..] It’s almost as if most of the members resent

the fact that they can help themselves. They appear to

want external solutions (P8).

Box 3: Theme of nurturing

� Time is always an issue. I never feel I have enough time to donate and write enough. Group members want person

replies. They don’t want just direction s of where to go to

read something. They need to know a real person cares

about them. So there is a lot of time spent with personal

hand holding on repeat issues that continue to come as

new group members come in (P1).

� There are times I feel this is not helping me move through stages I need to move through to live with this disease, yet

not be so involved with it that it takes so much of my men-

tal ability and time that I could be spending getting on

with thing [sic] not involved with this bone disease. Per-

sonal growth for the owner/mo derators need to be kept

in mind (P1).

� Be sure you have the time to devote to the project and the compassion to do it with kindness . Know that you may be

treated poorly by some members – but that more people

will be grateful for your work than hurtful. Be aware of

burnout – it is hard work emotionally . Practice self-care

and take breaks when needed (P22).

� Know what you want to achieve, grow a thick skin, and keep a level head. Learn to walk away and not act rashly

when topics flair up, and they will. New people always

get moderated (P12).

� Be prepared to take some heat on the tough calls. Mem- bers don’t like being told they can’t do something. Don’t

take insults personally (P18).

� Trust, confidentiality, fairness and courtesy. Many of new- est members are scared and confused. They need to feel

safe in asking questions without being judged or criticized

(P7).

� Diplomacy, respect and kindness. We are all equal no mat- ter our status but as a role of moderator, it is up to me(us)

to keep things under control (P28).

� Participants must feel safe. To accomplish that, you must attempt to strike a balance between rule implementati on

while also allowing free expression. Moderators must

always be empathic and compassionate . We must always

remember that there are real people on the other side of

the screen who deserve to be treated kindly (P23).

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