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Human Reproduction Vol.23, No.3 pp.

567–572, 2008 Advance Access publication on December 18, 2007


Helping themselves to get pregnant: a qualitative longitudinal study on the information-seeking behaviour of infertile couples
Maureen Porter1 and Siladitya Bhattacharya
Department of Obstetrics and Gynaecology, Aberdeen Maternity Hospital, University of Aberdeen, Forestherhill, Aberdeen AB25 2ZD, UK

Correspondence address. E-mail:
Downloaded from by Agnes Horvath Hajdu on February 9, 2011

BACKGROUND: Couples seeking infertility treatment are generally hungry for information about available therapeutic options and how to help themselves achieve pregnancy. This study examined couples’ perceptions of the information available from various sources in the context of achieved pregnancy or continuing treatment. METHODS: A 3 year prospective interview study started in April 2004, following couples undergoing infertility treatment at a tertiary fertility clinic at Aberdeen Maternity Hospital. Fifty-four couples were invited to participate. Up to three semi-structured interviews took place, and were analysed thematically using a variation of grounded theory. RESULTS: Twenty-seven couples agreed to participate and of the 25 couples followed up, 11 were diagnosed with unexplained infertility. The age range of the women was 22–41 years. All hoped to be given information on helping themselves to achieve pregnancy, spontaneous or assisted, and 19 of the 25 couples became pregnant. Most couples were dissatisfied with the written and verbal information routinely provided by the fertility clinic because it suggested lifestyle changes they had already attempted to adopt. They sought additional information from the internet, books and magazines. Those who became pregnant were generally empowered by the experience and thought that it had helped them to conceive. Women who were still undergoing treatment however, sometimes became distressed, blaming themselves for failing to follow the lifestyle advice provided. CONCLUSIONS: Couples, especially those diagnosed with unexplained infertility, seek information to help themselves conceive, but only those who succeed find it an empowering experience.
Keywords: infertility; information seeking; self-help; alternative remedies; qualitative study

Introduction Most infertility clinics in the UK supply patients with written information of their own, and also that produced by charitable and statutory organizations involved in infertility care such as Infertility Network UK and the Human Fertilisation and Embryology Authority. Clinicians and nursing staff also advise couples individually about how best to help themselves achieve a pregnancy. Nevertheless, studies suggest that most couples coming to infertility clinics seek further information. They actively trawl the media for relevant items, read books and magazines, and search the internet for tips and support (Cousineau et al., 2004; Hinks et al., 2004). In one of the few studies to examine infertile couples’ information needs and the use which they make of the information obtained in this way during subsequent decision-making, Wingert et al. (2005) suggest that searching for information is the second step couples take after recognizing they have a problem. In a study of Canadian infertility patients, Weissman et al. (2000) found that 56% of current internet users had obtained

information about fertility issues from the internet, regardless of their socio-economic or medical status. Of these, 30% found it helpful in their decision making. Another Canadian study by Huang et al. (2003) reported greater internet use among women, higher socio-economic groups and higher earners. Himmel et al. (2005) found that 66% respondents visiting an ‘internet expert forum on involuntary childlessness’ expected general information about involuntary childlessness, conception or an evaluation of drugs and 41% to discuss their actual treatment. Interestingly, the authors described patients’ requests for basic information as ‘trivial’ and an inappropriate use of an expert forum. Though a number of studies have examined couples’ information seeking in the context of coping behaviour, few have used qualitative methods to find out the meaning for couples themselves of seeking information and their perceptions of any knowledge obtained during the course of infertility investigations. Such meanings and understandings do not have an 567

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Tape-recorded and transcribed verbatim. Although it clearly states that both partners will be examined. Causes of infertility were ultimately diagnosed in 24 of the 25 couples: 11 unexplained. Letters of invitation were sent to 54 couples attending the fertility clinic at Aberdeen Maternity Hospital for the first time. 3 combined (ovulatory plus male factor). Thus the second interview varied from 5 –17 (average 9) months after the first. decision making was delayed. one man expressed surprise. In total. before a diagnosis was made. After reading and rereading the transcripts. Hence. and five became pregnant. The final interview occurred 1–2 years (average 18 months) later and was designed to follow couples’ experience of one or two treatments without success or the diagnosis of pregnancy if appropriate. The next section describes how that meta-theme was inductively derived from various sections of different interviews and includes couples’ responses to relevant summary statements. During this process. 1997). 58 interviews were completed. .11) years versus 33. three of the second and three of the third interviews were conducted with the woman only and one final interview was conducted by telephone. six were the result of treatment (1 ICSI. 2011 Results Respondents’ background Among recruited couples. With few by Agnes Horvath Hajdu on February 9. These took the form of 11 summary statements which respondents were invited to discuss. 4 tubal factor. couples were interviewed together in their own homes at their convenience. Of the initial 25 couples interviewed. decision-making and ways of coping.oxfordjournals. Of the 20 couples interviewed a second time. Owing to circumstances. In a form of respondent validation (Bloor. Only three couples remained unsuccessful. Twenty-seven couples agreed to be interviewed and 25 were selected consecutively for inclusion. two spontaneously and three as a result of treatment (2 IVF. especially achieved pregnancy or continued treatment (Franklin. This was thought sufficient to develop explanations of behaviour through the detailed scrutiny and deviant case analysis typical of qualitative methods (Mason. couples were regularly contacted by telephone between visits. patterns and themes emerged which were discussed with colleagues to increase the reliability of the coding and the validity of the interpretation. 2 clomifene. 3 IVF) and one was unclear (clinic facilitated and medicated weight loss). Materials and Methods This longitudinal study started in April 2004 with the aim of following a small number of couples from original contact with the fertility clinic until their treatment ended—through pregnancy or discontinuation—or 3 years had elapsed. The ages of those interviewed did not differ significantly from those refusing [mean (SD)] 33. Ethical constraints prevented us from obtaining more information on couples who refused to participate. two became pregnant shortly thereafter without any treatment. one couple because they moved away and two refused further interviews. there was a lot more done than 568 . Three were lost to follow-up at this stage. respectively. 1967). 1997). We decided to interview them together because they are treated as a couple at the clinic and expected to make decisions together on investigations and treatments available. 2002). One woman who was pregnant as a result of IVF dropped out of the study. leaving 13 couples for the third and final interview. Of these. Arksey (1996) and Seymour et al. one was discouraged from further treatment due to female age. however. We also wished to investigate couples’ changing perceptions of such information over a period of time and in the context of continuing treatment or achieved pregnancy. 2 male factor only and 1 with endometriosis. Most people read them and commented on the content. “. most expected the first visit to be little more than a preliminary discussion. The interviews were semi-structured to allow topics of interest to researcher or respondents to be fully explored if appropriate (See aide memoire in Appendix). some of the major themes concerning respondents’ perceptions. However. Just for their own interest. respondents were given transcripts of the previous interview at each subsequent one. . women’s ages ranged from 22 to 41. but are constructed during the course of social interaction. though one had experienced a spontaneous abortion following intrauterine insemination (IUI). equally valid results would have been produced by interviewing couples separately.24) years. concerning couples’ expectations and response to their referral to the infertility clinic. the interviews were analysed thematically using the variation of grounded theory recently described by Charmaz (2006).3 (5. Two of the women and two of the men had children in previous relationships and one in their current relationship. 48% interviewed couples lived in Aberdeen city compared with 50% of those not interviewed. Whether or not they received the leaflet.Porter and Bhattacharya objective reality which can be measured by scientific instruments. The presence of multiple interviews with respondents enabled us to treat their accounts as biographical narratives and to examine their reinterpretation of events in the light of subsequent experiences. which were identified during analysis of the first two interviews. were presented to them during the final interview. The first interview occurred soon after the first hospital clinic appointment. Obviously different. Three of these. Downloaded from humrep. suggested that they wished to help themselves to achieve pregnancy if at all possible. Stating that he thought his partner would have to come back later for a scan. An investigator’s (MP) ill-health delayed the third interview in a number of cases. data were coded by large topic area and then into smaller sub-topics.4 (5. The second interview was planned after a diagnosis had been made and a treatment plan agreed. 1 clomifene). few seemed to have prepared themselves for this. one who had been previously sterilized decided not to pursue any form of fertility treatment. Figure 1 summarizes clinical outcomes in the couples during the course of the study. Seeking information Only half of the 25 couples interviewed had been sent a leaflet explaining what to expect at their first clinic visit. Of the 10 who were pregnant or had given birth by the third interview. three were spontaneous pregnancies. particularly when people narrate their story (Berger and Luckman. (1995) have written of the advantages of joint interviews when a collaborative definition of a situation is required. we used in-depth interviews to find out how couples seeking fertility treatment felt about the nature and quantity of information available to them from the clinic and elsewhere. and the other was told that her tubes were blocked and she would need IVF. including one with polycystic ovary syndrome (PCOS). but no-one wanted to change anything. 3 ovulatory. As seven couples participated in a clinical trial lasting 6–12 months where they were randomized to alternative treatments.

He never said. Advice on adopting a healthy lifestyle—diet. they didn’t really have to tell us about that. one woman said of the internet.acupuncture every week. There’s quite a lot of good support groups on the internet you know. . No support group was available in Aberdeen at the time of study. Couples seemed to expect that the information provided by clinic staff would be superior to that which they could obtain themselves and were often disappointed when it was not. . weird and wonderful instructions like stand on your head for half an hour and all this kind of stuff. But because neither or us do that you know. they are going to advise you to stop those sorts of things just to help out that. exercise. the others being pleased with the information obtained (2) or saying it was irrelevant in the case of a couple having by Agnes Horvath Hajdu on February 9. etc. long chat and to come away from there with you know. Much of their information seeking and subsequent activity was directed towards this. . couples were also influenced by success stories in common currency about pregnancies resulting from referral or investigation. Two couples reported learning about the right time of the month to try for pregnancy or the ineffectiveness of commercially available ovulation tests and predictors. Couples also evaluated alternative remedies on offer such as reflexology and acupuncture. “.” (Female020 third interview). weight control. but after what was frequently a long wait for their hospital appointment. “I think the dye test is probably better for us because we’re still young and you never 569 . All couples were offered counselling. . Indicating that she had not been guided by the clinic. 2011 I thought there would be. if there are things that you don’t understand.oxfordjournals. A woman who had tried Chinese acupuncture and Chinese herbs said that she started to feel exploited. and I started to feel pressured into buying more and more herbs. with varying degrees of scepticism. . Conceiving naturally Couples largely hoped to be able to conceive themselves without having to go too far down the investigation/treatment route. All but one of those asked. “I was going for. . agreed with the summary statement that the first visit was satisfactory. So you can talk to people in the same situation as you. “I found it most helpful. Speaking of the investigations. Not only were they disappointed with the absence of helpful hints. However. had taken steps to improve their lifestyle. I mean if you are a smoker. you know what they’ve tried. . “Do this and do that. . . . “He (the doctor) never gave us nothing to go away with. .” (Female037 third interview). you know people give advice or.” I would have got more information going home and going onto the internet or reading books. . Couples were generally pleased to be scanned or examined.—was irrelevant because they were already aware of such factors and. Every couple interviewed read magazines and books and most surfed the internet for additional hints and information. several mentioning the same popular writer on infertility as being helpful. However.” (Female001 second interview). it just depends on your personal circumstances. Those who had been diagnosed with specific conditions such as PCOS or endometriosis obtained information on possible treatments and support groups. Ten of the 13 couples agreed that it was true.Helping themselves to pregnancy Figure 1: Clinical outcome for the 25 couples undergoing infertility treatment at a tertiary fertility clinic at Aberdeen Maternity Hospital who agreed to be interviewed Downloaded from humrep. a more positive view was taken of the internet’s ability to provide experience-based information and support from those going through the same process elsewhere. your first time you just expect to have a long. Others indicated that they might have used the counselling facility ‘had the need arisen’.” (Female103 interview1). I thought the initial visit would just be a general history taking and asking how long we’d been trying and so on—just an introduction really.” (Female049 first interview). one man said. in most cases.” (Male037 first interview). . but only one man took up the offer after his partner miscarried. but the standard factual information they received was perceived as unhelpful. Several couples mentioned the opportunity which the internet provided for unscrupulous merchants to exploit vulnerable couples such as themselves. but that was just going and doing it myself. . or a drinker. Many said that they had spent ‘hours’ on the internet researching every aspect of infertility but two couples said that they did not want to know too much or were ‘freaked’ by the plethora of information available. That they were ‘disappointed’ not to receive more practical advice was one of the findings revealed to couples during the final interview. many expected to be given more practical information or helpful hints on how best to help themselves: “.

. They regretted that clinic staff did not do more to encourage couples to help themselves. . You are being proactive about it. Well as natural as IVF can be. particularly when it came to losing weight.” (Female033 second interview). . . even though they knew it was not likely.. . . Not all couples had hope of conceiving naturally but even those without. “They’ll get me pregnant. it makes you feel empowered because you’re doing fsomethingg. . . We still think we’ll do it naturally. It was one or the other (laughs). A woman who had tried for 6 years without success believed that the hysterosalpingogram or the copious amounts of pineapple juice she had swallowed must have helped. . . basically to help how you think about it. One woman was unsure. . a man who had cut out strenuous exercise in an unsuccessful attempt to improve his sperm quality. over the next few months. But then you realise that this is not always going to be possible.eight embryos came from the ten eggs so and that was just.Porter and Bhattacharya know. Those who could not conceive without assistance were not asked to indicate its relevance to them. Couples believed that passing responsibility onto the clinic might enable them to relax enough to conceive. The acupuncture must have worked. and a number of women had changed to less stressful jobs in the hope of assisting conception. perhaps enabling them to regain some control of the situation. sperm and see what can be done. But I think maybe they have realised that if people think that X.” (Female 006 third interview). you know because like I say. you know.I know doctors don’t do a lot of alternative things. . It makes me pleased insofar as. for tests. There was no.” (Female 103 third interview). . for their next period and for results. I don’t know if any of these things will actually work.just the possibility of doing everything you can. “. or it was all the pineapples I ate that month. they blamed their poor lifestyle or lack of adherence to guidance. . you never know. I think ICSI is when they force it. 1982).” (Female118 third interview). . . as is illustrated by the following quotation. and spend a lot of time simply waiting—for appointments. I had problems with. Others felt that thinking positively or not entertaining the possibility of failure had helped. Nine of the 10 couples asked agreed with the summary statement that they had hoped that ‘just being referred or starting investigations’ would enable them to conceive. “.you know everybody says. . said that his wife’s dietary changes must have been more influential. “. The three couples who had not conceived by the time of the third interview did not feel they had done all they could. . Typically. . . I had done all my sessions and stuff and then went to IVF.” (Female026 third interview). Couples also heard this from other by Agnes Horvath Hajdu on February 9. Consequently. .” (Female108 third interview). Helping themselves Those who became pregnant.oxfordjournals. Relaxation was seen as key to natural conception. . thinking that I was sabotaging my own chances. I just felt it was some sort of failing in me as a person. found that the diagnosis. Y and Z will help. Couples who believed that they had helped themselves to achieve pregnancy were generally empowered by the experience. Although a natural conception meant that couples could conceive body was relaxed. those who were successful were able to present ‘positive thinking’ as a successful strategy for helping themselves although at the time it was “. . there’s a lot of things online that are more things to help. I know that. “Oh when you relax it just sort of happens. it was natural. “I think it was that dye test did something for me and that. “Well. .You hear stories of people going and getting the tests done and then the following week falling pregnant . . This suggests that couples’ stories may reflect a process of selecting among their own actions those which show them to be active and successful participants. it helps them to be more positive about it. 2011 .” (Female049 second interview).” (Female108 third interview).” (Female033 second interview) including the medical profession: “My doctor did say a lot of folk fall pregnant while they are waiting for an appointment because a lot of stress comes off them. Such empowerment is particularly important because infertility patients are largely the passive recipients of investigations and treatment. . . In retrospect. but it would be really nice. . . some of those who had initially hoped that referral alone might achieve pregnancy. such as women with blocked tubes or men with poor sperm. . . one woman described thinking. their age and the duration of infertility affected their perceptions of the likelihood of ‘doing it themselves’. whether conceiving naturally or as a result of treatment. often viewed their own efforts at 570 information gathering and lifestyle change as contributing to their success. because it was the month straight after fthat I conceivedg. . we got there by ourselves. Either that. Describing the problem as being taken out of her hands. . One reason that couples hoped to ‘do it themselves’ was the evidence that conceiving naturally provided of fertility. . whether spontaneously or as a result of treatment. similarly wondered if they would need it again to conceive another child. some types of treatment are seen as more unnatural than others. Those who had conceived as a result of clomifene treatment. . which is what you are trying to do. “. if I really wanted to do it I would have lost weight. . . if anything happens to this baby. and perhaps I didn’t really want to have a baby at Downloaded from humrep. . “. . So yeah maybe it helped. . sought information on how to enhance their chances of assisted conception. suggesting why its invasiveness might be seen as problematic.” (Female103 third interview). they welcome anything that improves their mental state. men gave up cycling and wore loose underwear and women gave up alcohol and coffee. Another reason couples preferred to conceive without assistance was that infertility treatment was not seen as ‘natural’ because of its invasive nature but.” (Male054 first interview). However. As time passed. A woman who became pregnant as a result of IVF speculated about the effect of the alternative treatments she had tried: “But when I went for reflexology she said I was so. These periods of waiting have contributed to what has been described as the emotional ‘rollercoaster’ of infertility treatment (Hertz. A woman who had successfully undergone ICSI expressed concern about the long-term effects of such a procedure on the child. . instead of feeling like this is happening to us. they did not take this for granted and often expressed concern that they might experience difficulties in future. I can get pregnant . . Hence. But it was just eggs.

Another who had not conceived also felt that other people would not understand the difficulties and would blame her for failing to lose weight. 2007).Helping themselves to pregnancy all. although it was evident that those who had no hope of conceiving by themselves 571 Downloaded from humrep.g. Those who were unable to help by Agnes Horvath Hajdu on February 9. including the ‘unnaturalness’ of assisted conception. . More couples than is usual were diagnosed with unexplained infertility. (2007) recently found that patients were not measurably empowered by having access to internet sites providing personal and general information and giving access to fellow patients and physicians. Tuil et al. A general trend towards seeking health information online has been documented (Sillence et al. . why can’t you lose the weight?” And .” (Female039 third interview). but most used it selectively to gain information and seek support. e. possibly because he had been told that his ‘sperm were fine’. In the context of a longitudinal study. e. The initial response rate was not as high as might be hoped owing to the commitment demanded of a longitudinal study such as this. but once included most respondents stayed until the end. The effect of the narrative is to show respondents’ interpretive control (Tennen et al. The longitudinal nature of this study allowed couples’ changing perceptions of their experiences to be examined over time. preferably naturally.. and planful problem solving can be seen as such (Peterson et al. Their narratives may help them to accept the situation as Tennen et al. . The study suggests that their efforts to help themselves often made couples feel positive and empowered. ... .” (Female020 third interview). However. Following couples naturalistically from before they were diagnosed meant there could be no control over the types and duration of infertility included. Knowledge of the outcome enabled them to reappraise the actions they had taken to help themselves and to present them as successful or not.oxfordjournals. (2005) have shown. this was a small. Men were also expected to lose weight or adopt a healthier lifestyle and two of the three in this group had done so. 2011 . Even those with tubal damage or sperm problems. unsuccessful couples felt obliged to account for not having done what they could to maximize their chances of success. Moreover. .. relaxing their minds and bodies sufficient to conceive. who had no hope of conceiving without assistance. This study suggests that some of patients’ information seeking is directed towards helping themselves to achieve a pregnancy. Their search for helpful information also reveals to them the potential benefits of support groups and alternative therapies such as reflexology and acupuncture. as Wingert et al. they are perhaps particularly keen to explore alternative options and to enhance their chances of conceiving. selected sample from an individual fertility centre. The one who had not. this did not appear to be the case for these respondents. 1991) because even those who did not become pregnant could have worked harder to achieve that goal. 2003. no longer blamed herself for failing to do so. Losing weight is a difficult task for many women and likely to be particularly distressing when combined with the traumatic experience of failing to conceive. you’re disappointed. but women’s search for information and support. we identified a few couples who found the content of the internet alarming. As this group suffers from a lack of clarity regarding the cause of infertility. .g.. resulting in greater use of support networks or health and social care systems. However. Discussion The study suggests that the information routinely supplied to couples during the course of their hospital visits—whether verbal or written—is not generally perceived as sufficient. . . 2007). . or to choose the most successful from their repertoires. felt psychologically diminished. This belief is important as loss of control is reported to be a common experience of infertility patients (Cousineau and Domar. encouraging them to look elsewhere for alternative sources including the internet.. raising the question of whether clinics should be doing more to debunk the myths about what can and cannot help couples conceive. their five-point scale may not have been sensitive enough to detect perceived ability to control or influence a process which had previously been outside their control. Like Himmel et al. Time constraints prevented further couples being added at a later date. Hence. “. . (2005). 2007) and infertility patients reported to be active seekers of descriptive information and second opinions (Weissman et al. blamed himself for failing to eat a healthy diet but did not link it to the failure to conceive. couples appeared to believe that this is an effective strategy. because your period comes. . perhaps illustrating the need for basic factual information. Those who became pregnant often felt that their actions might have helped. The results are not generalizable to a wider population. (2004). (1991) have suggested that causal explanations of infertility may enhance adaptation. Huang et al. and Segev and van den Akker (2006) have suggested that it may continue into their experience of parenthood. “Oh if you want something so badly. believed that they could improve their chances of assisted conception by actions such as following dietary advice. And I’m a big comfort eater. at following a healthy lifestyle or losing weight. the weight is a huge issue for me and I know overweight people get pregnant but . with a preponderance of a particular type of infertility. we found that couples see a natural conception as preferable for a number of reasons. 2000. more couples than had been expected became pregnant and naturally left the study. The third woman in this group had also mentioned during early interviews that she felt she should lose weight. felt that they might have ‘sabotaged’ their chances of becoming pregnant. A recent study by Robinson and Ellis (2007) described mistiming of intercourse as ‘a probable cause of failure to conceive’ in many couples. some medical information patients obtain from sources such as the internet is inaccurate.186) and may even contribute to feelings of lacking control. . Though Letherby (2003) has argued that infertility patients’ ‘accumulation of information does not add up to knowledge’ (p. And I started thinking I was going bonkers. it’s just so difficult.. by losing weight. it’s just a vicious circle . Like Hjelmstedt et al. . 2006). people probably say. Couples did not suggest that their actions were a means of coping with a threatening or uncertain situation. However. Although Tuil et al. the downside of regaining some control was that those who failed. but having conceived during IUI.

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J Med Inter Res 2005. 1984.4:95 –101.156:269. 2007. but this was an area of life where women seemed to take control.