Patient Education and Counseling 81 (2010) 436–441

Infertility; isolation and the Internet: A qualitative interview study

Lisa Hinton a,*, Jennifer J. Kurinczuk b, Sue Ziebland a

a Health Experiences Research Group, Department of Primary Care, Oxford, United Kingdomb National Perinatal Epidemiology Unit, Department of Public Health, Oxford, United Kingdom

A R T I C L E I N F O

Article history:

Received 3 February 2010

Received in revised form 20 September 2010

Accepted 23 September 2010

Keywords:

Infertility

Internet

Qualitative

Support

A B S T R A C T

Objectives: This study explores the roles and meanings of the Internet, which is commonly used in this

age group, as a source of support for people with fertility problems.

Methods: A qualitative interview study with 27 women and 11 men who had been, or were going,

through treatment for infertility. A maximum variation sample was sought. Narrative interviews were

conducted and transcribed for thematic analysis.

Results: Women and men with fertility problems often feel isolated. The Internet offers anonymity,

emotional support, normalisation and reassurance. It also offers the prospect of niche support from

others going through treatments at the same time and in similar circumstances. Online infertility

networks can play a valuable role in helping people deal with the emotional stresses and isolation they

feel during and after treatment, but has the potential to reinforce isolation.

Conclusions: The Internet is changing people’s experience of infertility, giving people access to other’s

experiences. Internet communication is highly valued by couples, especially those isolated in their real

world relationships.

Practice implications: Clinicians can help by referring couples to websites while being aware that

increasingly ‘niche’ support could compound isolation.

� 2010 Elsevier Ireland Ltd. All rights reserved.

Contents lists available at ScienceDirect

Patient Education and Counseling

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1. Introduction

The experience of infertility can be devastating. Whileindividuals experience infertility differently [1], research showsthat the experiences have lasting emotional effects. Unsuccessfultreatment can leave women feeling sad, anxious and depressed [2],with a sense of loss and bereavement [3]. Even successfultreatment can come at great emotional cost [4]. Infertile womenexperience levels of psychological distress similar to patients withgrave medical conditions, such as cancer or those going throughcardiac rehabilitation [5–7].

Health is one of the most common reasons for using theInternet: 68% of the British public use the web to search forinformation about health [8]. The Internet is very widely used inthe age groups involved in infertility treatment and studieshighlight increasing Internet use among people with infertilityproblems. People going through infertility treatment are turning tothe Internet for a variety of reasons. Himmel et al. [9] in a study of aGerman fertility website found visitors seeking detailed medicaladvice and emotional support. In the US Kahlor and Mackert [10]

* Corresponding author at: Health Experiences Research Group, Department of

Primary Care, University of Oxford, Old Road Campus, Oxford Ox3 7lf, United

Kingdom. Tel.: +44 1865 289328; fax: +44 1865 289 287.

E-mail address: lisa.hinton@dphpc.ox.ac.uk (L. Hinton).

0738-3991/$ – see front matter � 2010 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2010.09.023

found the Internet the most heavily relied on source forinformation and social support. Women reported feeling betterinformed and able to make decisions as a result of onlineinformation, which also helped communication with doctorsand partners. Their Internet use also helped them realise they arenot alone in facing these issues, inspired hope and even helpedthem to develop new friendships. Cousineau et al. [11] found thatfew women in the USA thought they needed to use professionalpsychological services during treatment but many went online inpursuit of medical information and support from other women inchat rooms.

Malik and Coulson [12] highlighted the beneficial role of theInternet for those going through fertility treatment, or coming toterms with its aftermath. In a self-completion questionnaire studyof people using an infertility web forum they found involvement inonline support groups was reported as reducing the respondent’ssense of isolation, providing information and empowerment andreducing the burden on relationships.

However, while the Internet can help people facing infertilitythrough education and empowerment, it can also be associatedwith problems. An American survey [13] studied the Internet useand psychological well-being of two groups of infertility patients;those who had only the Internet for support and those who hadadditional outlets of support. Epstein suggests that validation andsupport from others online may have encouraged them towithdraw from difficult real world situations, for example talking

Table 1Infertility, isolation and the Internet: a qualitative interview study.

Men (11) Women (27)

Stage of treatment

In treatment 3 5

Finished treatment 8 22

Children (or pregnant) 6 15

Adoption 2 3

No children 0 4

Causes

Female factor 2 5

Male factor 3 4

Both partners 3 4

Unexplained 2 12

Sterilisation 1 2

Treatments

No treatment 0 3

Only IUI 1 2

IUI with sperm donation 2 2

IVF 5 12

IVF with egg donation 1

IVF with sperm donation 3

ICSI 1 2

ICSI with egg donor 1 1

IVF with donor egg and sperm 1 1

Age rangea 34–63 28–61

IUI, intrauterine insemination; IVF, in vitro fertilisation; ICSI, intracytoplasmic

sperm injection.a Two interviewed 20+ years after treatment.

L. Hinton et al. / Patient Education and Counseling 81 (2010) 436–441 437

with friends who had children. A British questionnaire study [12]of users of several online infertility support groups identifiednegative as well as positive aspects to the online experiences ofindividuals. Access to other people’s experiences could lead tofeelings of overwhelming sadness or compound psychologicaldistress. Some found that comments could be taken the wrongway, leading to upsetting misunderstandings, and participationonline could lead individuals to becoming preoccupied, orobsessed, with their condition.

Qualitative research can illuminate meanings and understand-ings. This article draws on interviews collected for a wider study ofpeople’s experiences of infertility, and their information andsupport needs. We use qualitative methods to help explain whyand how couples going through infertility are using the Internet forsupport, highlighting in particular the positive and negative effectsof niche support online. The definition of niche support used here issupport tailored to a person’s (health) status, providing a place ofsafety or retreat. Our qualitative analysis adds to the literature byexploring how this Internet use is linked to, and potentiallyreinforces, the sense of isolation that couples can feel when dealingwith infertility. We consider the consequences for real worldinteractions and clinical communication.

2. Methods

A qualitative design was used comprising narrative and semi-structured audio recorded interviews with 38 people. We aimedfor a diverse, maximum variation sample [14] of participants whowere going through treatment or had finished treatment. Variationwas sought across causes, treatment received, successful andunsuccessful treatment, those living with, and those livingwithout, children, geography and NHS or private care. Withapproval from UK Anglia and Oxford multi-centre research ethicscommittee (MREC), participants were recruited through GPsurgeries, specialist consultants, support groups, online news-letters and word of mouth.

Participants were visited at home by a social scientist, trained inqualitative methods (LH). Interviews were conducted individuallyeven if both partners were contributing to the study. A narrativeinterview was audio recorded, with informed consent. Respon-dents were asked to tell their own story, with as little interruptionas possible, to capture their own accounts of their experience ofinfertility and highlight the aspects that were important to them.The interviewer then used a series of prompts to explore particularissues further in the semi-structured part of the interview. Thissection of the interview included questions about how and whyinformation and support had been accessed, although this wasfrequently raised in the initial narrative. Questions were addedduring the course of the study as new issues emerged.

2.1. Sample characteristics

Forty interviews were conducted with 38 individuals. Onecouple was interviewed twice, seven months apart, to capture theirexperience of the IVF cycle they had been waiting for during thefirst interview (LH took the opportunity to conduct the follow-upinterviews when she returned to the city for other fieldwork). Thesample included 27 women and eleven men. Some were stillreceiving treatment, but the majority had completed treatment. Ofthe 30 who had completed treatment, 21 had had a successfulpregnancy, 5 had gone on to adopt and 4 were living withoutchildren.

The age range was 28–63 years; nine people went through theirfertility treatment before the Internet was widely used. Twenty-nine people were recruited using support groups email lists. Whilenot all described actively using the Internet for support, the sample

was Internet literate, and those who were still going throughtreatment were active Internet users. Interviews were conductedfrom 2007 to 2009 in England and Scotland (Table 1). Ten of thoseinterviewed had treatment only through the NHS, twenty had onlyprivate treatment, including a couple who participated in an eggsharing scheme for their first attempt. The remaining eightpursued a combination of private and NHS treatment.

2.2. Analysis

The interviews were transcribed verbatim for analysis. Afterchecking by LH, the transcripts were sent to each of theparticipants to review and approve. Interviews were read, re-readand systematically coded [15]. A qualitative interpretativeapproach was taken, combining thematic analysis with constantcomparison [16,17] so that data were explored for themes alreadyknown from the literature as well as emergent themes. The dataand themes were developed by LH and SZ and discussed by allauthors. NVIVO 7 software was used to help sort and retrieve thedata for analysis, compare themes across the data set and highlightcases which did not fit with the emerging analytic pattern (knownas ‘deviant cases’ or outliers) [18]. Anticipated and emergentthemes were identified, deviant cases were explored and themesdiscussed and further refined by the authors. Pseudonyms are usedwhen presenting the data.

3. Results

While many respondents used the Internet to find healthinformation, we focus here on the ways the Internet is changingtheir experiences of support and isolation. We report on thesupport needs that people described and where and how they triedto fill those needs.

3.1. Isolation and the infertility experience

While interviewees often talked about unpleasant physicalaspects of treatment it is the emotional and social consequences oftheir infertility that stand out in their descriptions. Isolation, as an

L. Hinton et al. / Patient Education and Counseling 81 (2010) 436–441438

individual and couple, from their normal social world was adominant theme. The language used is striking; respondents useexpressions such as ‘‘freak’’, ‘‘odd one out’’, ‘‘lepers’’ and ‘‘pariahs’’.

3.2. Real world support

Outside of partners, it is support from family members thatpeople tend to rely on most. But family relations were not alwaysstraightforward. Some described support and empathy from familymembers, but others found it hard to talk to their families, ordescribed lack of understanding or insensitivity.

Friends are a major source of support, particularly for women.But support from friends can be complicated (not least if, as oftenhappens, the friend becomes pregnant). Respondents often feltthey were in a slowly developing life crisis with which their normalsocial circle could neither empathise nor understand.

3.3. The transformative role of the Internet for emotional support

Against this background, finding out about other people’sinfertility experiences can help women and men make sense oftheir own emotions and experiences. People who went throughtreatment before the Internet had to cope with the support systemsthat were available in their social worlds or a local support group.Networks of support were smaller and more hit and miss. TheInternet offers a new outlet that is available 24 h a day, seven days aweek, whenever people feel they need it. Those who use the Internetfor support paint a picture of a rich environment of emotionalsustenance wider, deeper and more personally tailored than wasavailable before. Our analysis highlights three aspects of Internetsupport that seem to be transforming the experience of infertility.

� Anonymity;� New opportunities for niche support;� Emotional adjustment: normalisation, reassurance, coping.

3.3.1. Anonymity

One revolutionary element of Internet communication isanonymity. Being able to be anonymous and invisible onlinewas valued by our respondents: several described ‘lurking’, lookingat web forums and message boards but not posting comments orgetting involved. This allowed them to find out how others werecoping without exposing themselves before they were ready.Maggie (unexplained infertility) wanted to read about otherpeople’s experiences on web forums without getting involved.

I did use forums and I did find those really, really helpful. Iwould quite often just look and see what others were talkingabout

The 2009 Pew Internet survey strongly suggests that ‘lurking’ isthe most common behaviour on Internet health sites – fewer thanone in ten site users report posting their own comments orexperiences [19].

3.3.2. New opportunities for niche support

The Internet can dramatically impact the size of the socialnetwork available to people. Involvement in online communitiesallows respondents to find not only those who have experiencedinfertility – who may offer general support and understanding –but to locate people currently experiencing identical treatments inthe same circumstances. These could be in the same town or just aseasily be across the globe.

Martin went through infertility treatment with his wife over aperiod of six years. He described the sense of community theydeveloped with the people they met online.

We made some really good friends through the contactsthrough bulletin boards and support mechanisms that we hadgot involved with. Some really great people, you know, butpeople that did understand where you were at and what wewere going through and going through it as well. So you almostbecome an infertile club.

For some, the online communities remain virtual, not leastbecause their members are scattered around the country or globe.For others, the friendships cross over into the real world. Bev andBelinda both described how some of these online friendshipstransferred into their real world.

This ‘niche’ support did not necessarily end when treatmentwas successful; a point when couples might feel that they are ableto rejoin the mainstream world of pregnancy. Naomi describedhow fragile her pregnancy felt and the importance of finding otherwomen online like her.

. . .. I think, pregnancy is very different, once you have beenthrough fertility treatment as well. [um] I don’t know. I’ve neverbeen pregnant without fertility treatment. But it just, it seemsso fragile having been through what we have been through toget here, and a sort of network of people who have also beenthrough fertility problems and are going through pregnancy atthe same time has been very, very helpful.

Nearly everyone interviewed described using the Internetamong other sources of support. But George described the Internetas his ‘‘only friend’’, a life line for information, emotional supportand hope through the long months of waiting for the nextappointment.

If I didn’t have that back up from the Internet then I would bereally lost.

There were few negative experiences ascribed to the Internetalthough Naomi described her involvement with the Internet ashard to handle after a failed cycle:

. . ..if you’ve had a really, really bad one, it’s a lot healthiersometimes just to say ‘Right, I’m getting obsessed, it’s time toleave this alone for a few months and concentrate on me as aperson, us as a couple and just get on with our life and try not tothink about infertility.

3.3.3. Emotional adjustment: normalisation

Couples may not be aware of others in their everyday lives whoare going through fertility treatment. Isolation adds to the difficultyof coping with the stresses day to day. For many of our interviewees,finding an online community of people in a similar situation was arevelation. Bev, in her mid-30s, had been trying to get pregnant forfour and a half years, enduring two IVF cycles and two miscarriages.She described her involvement in an online forum.

And you suddenly feel normal. You feel accepted. You can go onthe forum and say, you know, ‘I’ve just walked past a pregnantwoman in Sainsbury’s and I found myself standing in the fruitand veg aisle bawling my eyes out.’ And everyone else wouldthink, ‘Oh that’s a bit of an overreaction.’ The girls in the forumwere just like, ‘No I’m with you, I’ve done that, I’ve been there.’

Bev, like many others, felt her real world isolation wasincreased by a sense that, unless someone had been throughinfertility, they could not really understand what it is like. To findfriends, albeit virtual, who demonstrate an informed understand-ing of how she felt was greatly valued. Added to this was thereassurance that her reactions and emotions were not atypical.

L. Hinton et al. / Patient Education and Counseling 81 (2010) 436–441 439

Maggie who in her early 30s who had a miscarriage beforestopping treatment, also valued the normalisation that forumsoffered.

Especially when people were letting off steam, that made merealise that I wasn’t the only person who was feeling quitenegative thoughts towards tactless friends and family members.That was very helpful for me I think just from the perspective ofseeing that, Yes, you’re not the only one out there.’

3.3.4. Emotional adjustment: reassurance and coping

People who used the Internet for support during their treatmentdescribed not only understanding, but also emotional hand holdingthrough the day to day ups and downs of treatment. Online friendscould be involved in the fine detail of treatment that other friendsand relatives either might not understand or want to hear about.

Naomi, six years of treatment before conceiving twins abroadwith donor eggs and sperm, described the support from her onlinecommunity:

So there’s people that know what you’re doing, you know whatyou’re going through. You can talk to them about FSH or eggcollection. Or sperm counts and things like that. Firstly they arenot going to get embarrassed and secondly they actually knowwhat you are talking about. . . ..so that was a huge help to us.

Bev described how she would communicate with her onlinefriends at every stage of her treatment.

And I mean that was the brilliant thing about the (forum),because of course I had a whole bunch of friends online who Icould go and post in the chat room and say, ‘I’ve had thirteenfollicles.’ And they’d come back and go, ‘That’s great’ becausethey all knew what I was talking about.

In contrast, Bev described texting a result to a real world friendwho knew little about fertility treatment, who texted back saying‘is that good or bad?’ Having online friends, who understand the

[()TD$FIG]

Jealousy:otherpeople’s pregnancies/babies

Lack ofunderst(bereavparallel

Family & FriendsDon’t know what tInsensitive remarBecomes easier noCouples isolate thare isolated

Secrecy & change in lifestyle

World seems full of babies:physical world, TV, media

Limbo & life moving on around them

Loss of control over lives & uncertainty

Fig. 1. Causes of isolation for peo

emotional and medical significance of results is described asinvaluable. For some the Internet provided a community of peoplewho understood the stage of treatment and significance of theresults.

As well as reassurance from online friends, some suggestedonline support helped in their real-world relationships. Naomi feltthat her online friendships helped her relationship with herhusband, by giving her another outlet to talk about her anxieties.

It did mean that I probably wasn’t obsessing about quite asmuch to my husband as I would have been, had I not had thoseoutlets as well.

3.3.5. Negative aspects of niche support

However, the niche support people find online is not whollypositive. Bev, quoted above, suggested that the support that shegained from the forum reinforced her conviction that friends,family and indeed anyone who had not been through the same,could not ‘get it’.

With the best will in the world, unless your friends and familyhave been through it they just won’t get it. [. . .]They won’tunderstand the raw pain of not being able to have your ownchildren. The only people who will understand that are otherpeople who are in your place. And[.]now the Internet is here, Imean what people did before the Internet I don’t know.

Naomi described how she found it hard to handle her onlinefriendships after a cycle had failed. She also found herself gettingdrawn in to the online community, obsessing about her and others’infertility, and sometimes felt the need to withdraw and focus onother aspects of her life and relationships.

3.4. Reasons for not using the Internet for support

Not everyone used the Internet for support. Men did not seem tofind the same levels of support as their partners. While men’sforums on fertility sites exist, we were told they were empty.

ISOLATION

anding:ement s)

:o say ks t to tell them emselves and/or

Online communities & experiencesfrom other people (PEx)

Niche Support:Offers +ve support

Niche support:May reinforce & further alienate individuals from usual social circles.

ple experiencing infertility.

L. Hinton et al. / Patient Education and Counseling 81 (2010) 436–441440

George, who used the Internet a lot for information, could not findother men to share experiences with on the Internet. He read localforums to see what women chatted about, but did not get involved.‘‘It’s really quite lonely. It is a very, very lonely place to be’’. Martin,who used the Internet for information, thought the potential foronline emotional support really important, ‘‘But guys don’t useit. . .the guy’s community just doesn’t exist’’. He described feelingenvious of the online support that his wife was able to access.

Some women were put off by the impersonal nature of theInternet, others by prescriptive instructions on web forums. Somewere doubtful they would find reading others’ experiences helpful,especially tales of women also desperate for a child. Sarah (fiveunsuccessful IVF cycles and planned to stop treatment) did not feelshe would be helped by reading more ‘‘miserable tales’’. Mariannedid not want to cast herself as ‘‘a hysterical woman who couldn’tget pregnant’’.

I didn’t look on line or any of the chat groups you know. It wasthat stigmatised, hysterical women again. I thought that Iwouldn’t be the same as them.

Fig. 1 summarises the factors that lead to a sense of isolation ininfertility. Couples feel a growing sense of alienation from friendsand family who appear to become pregnant with ease. The diagramalso illustrates the potential for niche support to reinforce some ofthis isolation.

4. Discussion and conclusion

4.1. Discussion

The Internet is now a major source of health information amongcouples going through infertility treatment [8,19]. Using qualita-tive interviews, this study demonstrates why and how couples usethe Internet for social support. Isolation and anxiety dominate theexperience for many: our data suggest the web is changing theexperience of infertility by allowing anonymous, timely, targetedaccess to the experiences of others. These experiences includeinformation about treatment but are also very much valued fortheir perspectives on how to manage interactions in theparticipants’ social worlds.

The Internet opens new ‘virtual’ communication channels andcommunities of support that supplement the real world andprovide an access to personal experiences that was impossible inthe pre-Internet age [20]. The circles of social support described arewider and more likely to resonate with a couple’s own experiences.Online relationships can be more strategic, precise and focussedthan offline networks, helping people overcome isolation andunderstand their feelings and reactions are not unusual.

This qualitative study used semi-structured narrative inter-views. The approach allows the analyst to develop in-depthunderstandings of the experiences of infertility. But there arelimitations. Interviews present accounts of behaviour and atti-tudes; as is typical with these types of data, we do not knowwhether respondents were using the Internet and their real worldsupport in the ways they reported. However, the themes wediscuss in this analysis reflect experiences widely reported in theinterviews and, where comparison is possible, cohere with, orexpand on, findings of non-qualitative studies [10–12]. Ourrespondents were mainly Internet users who reported positiveexperiences of Internet support but we were able to interviewsome participants who, for various reasons, had not used the webfor support.

Our study builds on findings, of surveys and on-line ques-tionnaires that emphasise the potential value of online self helpgroups across a range of health issues. The work of Sillence et al.

[21], exploring how people use Internet sites for health informa-tion reported personal experiences of other patients are sought andhighly appreciated. Research on the health information needs ofmothers of children with genetic disorders [22] found mothersparticularly prized the informed, experiential knowledge of otherparents. In an interesting reversal of the clinical hierarchy ofevidence, the mothers in Schaffer’s study gave more weight toparents’ evidence than to information from health professionals orclinical trials.

Malik and Coulson [24] explored men’s experience ofinfertility through a thematic analysis of an online infertilitysupport group bulletin board. They found that men were usingmessage boards to share their hopes and aspirations, vent theiremotions and express their fears of disappointment. Manyshared the view that the bulletin board offered a valuable forumthrough which they could gain a much-needed male perspective,which they felt was often overlooked in the treatment focus onthe woman. They also provided a context to open up about theirfertility problems without the inhibitions associated with face toface discussions.

However, there are potential negative effects to these onlinecommunities. Epstein et al. [13] have found that couples wholacked offline, real world, outlets of support were more depressedand had fewer coping strategies. Those who rely on the Internetheavily, ‘‘learn that they get ‘permission’ from Internet buddies towithdraw from real-world interactions, and state that they doavoid these interactions’’. Sandaunet found in research on non-participation and withdrawal from online self help groups forbreast cancer patients [23] that online communities can offer hopebut also produce anxiety, expose people to frightening illnesstrajectories and produce emotional overload.

Sunstein [25] explores the rise of ‘‘niches’’ on the Internet in thewider context of participation in democracy. While individuallytailored communities on the web have many advantages there isthe danger that citizens may shut themselves off from otherviewpoints. ‘‘Common experiences, emphatically including com-mon experiences made possible by the media, provide a form ofsocial glue. A system of communications that radically diminishesthe number of such experiences will create a number of problems,not least because of the increase in social fragmentation’’. There is asuggestion in our data (although not explicitly stated by any of ourrespondents) that, at least temporarily, the niche support thatpeople find on the Internet could compound their sense of isolation(see the dotted line in Fig. 1). Our interpretation of the data suggestthat the power and appeal of these new online communities,where people can share experiences and draw so much supportfrom finding others who understand what they are going through,could increase their isolation from their real world relationships.There is a danger the alienation they feel from friends with childrenmay be fuelled by a chat room culture that reinforces the idea thatonly those who have gone through infertility can understand theexperience.

4.2. Conclusion

The Internet is changing people’s experience of infertility – aswell as being a source of information about clinics and treatmentsit is widely used to access other people’s experiences. Internetcommunication is highly valued by couples, especially those whoare isolated in their real world relationships, yet there is potentialfor isolation to be compounded.

4.3. Practice implications

Clinicians need to be aware that couples who are going throughinfertility are usually consulting the Internet for more than

L. Hinton et al. / Patient Education and Counseling 81 (2010) 436–441 441

information about treatments and clinics: the support they findfrom others who are going through similar experiences can helpthem to deal with the emotional stresses and isolation they feel.Clinicians who understand why people can feel so isolatedduring treatment will be in a good position to direct theirpatients to websites and forums. Having a list of websites torecommend to patients could be helpful and be a way ofimproving communication between physician and patient [26].However, clinicians should also be alert to the potential fornegative consequences (of further isolation) of using this nichesupport, if it appears to undermine real world social connectionsand support.

Funding

The project is funded as part of Lisa Hinton’s DPhil studentshipfrom the Medical Research Council, UK.

Conflict of interest

No authors have any conflict of interest.

Acknowledgements

We are grateful to the women and men who generously sharedtheir stories, colleagues in the DIPEx Health Experiences ResearchGroup in Oxford, the project advisory panel, Alison Chapple,Andrew Herxheimer and the anonymous reviewers for helpfulcomments on earlier drafts.

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