Hum. Reprod. Advance Access originally published online on December 17, 2007
Human Reproduction 2008 23(3):567-572; doi:10.1093/humrep/dem398
Helping themselves to get pregnant: a qualitative longitudinal study on the information-seeking behaviour of infertile couples
Department of Obstetrics and Gynaecology, Aberdeen Maternity Hospital, University of Aberdeen, Forestherhill, Aberdeen AB25 2ZD, UK
1 Correspondence address. E-mail: m.a.porter{at}abdn.ac.uk
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Abstract |
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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.
Key words: infertility/information seeking/self-help/alternative remedies/qualitative study
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Introduction |
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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 objective reality which can be measured by scientific instruments, but are constructed during the course of social interaction, particularly when people narrate their story (Berger and Luckman, 1967). Hence, 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. 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.
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Materials and Methods |
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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. Letters of invitation were sent to 54 couples attending the fertility clinic at Aberdeen Maternity Hospital for the first time. Twenty-seven couples agreed to be interviewed and 25 were selected consecutively for inclusion. This was thought sufficient to develop explanations of behaviour through the detailed scrutiny and deviant case analysis typical of qualitative methods (Mason, 2002
). The ages of those interviewed did not differ significantly from those refusing [mean (SD)] 33.3 (5.11) years versus 33.4 (5.24) years, respectively; 48% interviewed couples lived in Aberdeen city compared with 50% of those not interviewed. Ethical constraints prevented us from obtaining more information on couples who refused to participate.
With few exceptions, couples were interviewed together in their own homes at their convenience. 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. Arksey (1996) and Seymour et al. (1995) have written of the advantages of joint interviews when a collaborative definition of a situation is required. Obviously different, equally valid results would have been produced by interviewing couples separately. Owing to circumstances, however, three of the second and three of the third interviews were conducted with the woman only and one final interview was conducted by telephone. In total, 58 interviews were completed.
The first interview occurred soon after the first hospital clinic appointment, before a diagnosis was made. The second interview was planned after a diagnosis had been made and a treatment plan agreed. As seven couples participated in a clinical trial lasting 6–12 months where they were randomized to alternative treatments, decision making was delayed. Thus the second interview varied from 5–17 (average 9) months after the first. 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. An investigator’s (MP) ill-health delayed the third interview in a number of cases. However, couples were regularly contacted by telephone between visits. 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). Tape-recorded and transcribed verbatim, the interviews were analysed thematically using the variation of grounded theory recently described by Charmaz (2006). After reading and rereading the transcripts, data were coded by large topic area and then into smaller sub-topics. During this process, patterns and themes emerged which were discussed with colleagues to increase the reliability of the coding and the validity of the interpretation. 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, especially achieved pregnancy or continued treatment (Franklin, 1997).
Just for their own interest, respondents were given transcripts of the previous interview at each subsequent one. Most people read them and commented on the content, but no-one wanted to change anything. In a form of respondent validation (Bloor, 1997), some of the major themes concerning respondents’ perceptions, decision-making and ways of coping, which were identified during analysis of the first two interviews, were presented to them during the final interview. These took the form of 11 summary statements which respondents were invited to discuss. Three of these, concerning couples’ expectations and response to their referral to the infertility clinic, suggested that they wished to help themselves to achieve pregnancy if at all possible. 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.
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Results |
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Respondents’ background
Among recruited couples, women’s ages ranged from 22 to 41. Two of the women and two of the men had children in previous relationships and one in their current relationship. Causes of infertility were ultimately diagnosed in 24 of the 25 couples: 11 unexplained, 4 tubal factor, 3 ovulatory, including one with polycystic ovary syndrome (PCOS), 3 combined (ovulatory plus male factor), 2 male factor only and 1 with endometriosis.
Figure 1 summarizes clinical outcomes in the couples during the course of the study.
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Of the initial 25 couples interviewed, two became pregnant shortly thereafter without any treatment. Three were lost to follow-up at this stage, one couple because they moved away and two refused further interviews. Of these, one was discouraged from further treatment due to female age, and the other was told that her tubes were blocked and she would need IVF. Of the 20 couples interviewed a second time, one who had been previously sterilized decided not to pursue any form of fertility treatment, and five became pregnant, two spontaneously and three as a result of treatment (2 IVF, 1 clomifene). One woman who was pregnant as a result of IVF dropped out of the study, leaving 13 couples for the third and final interview. Only three couples remained unsuccessful, though one had experienced a spontaneous abortion following intrauterine insemination (IUI). Of the 10 who were pregnant or had given birth by the third interview, three were spontaneous pregnancies, six were the result of treatment (1 ICSI, 2 clomifene, 3 IVF) and one was unclear (clinic facilitated and medicated weight loss).
Seeking information
Only half of the 25 couples interviewed had been sent a leaflet explaining what to expect at their first clinic visit. Although it clearly states that both partners will be examined, few seemed to have prepared themselves for this. Whether or not they received the leaflet, most expected the first visit to be little more than a preliminary discussion. Stating that he thought his partner would have to come back later for a scan, one man expressed surprise, "... there was a lot more done than I thought there would be. 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." (Male037 first interview). All but one of those asked, agreed with the summary statement that the first visit was satisfactory. Couples were generally pleased to be scanned or examined, but after what was frequently a long wait for their hospital appointment, many expected to be given more practical information or helpful hints on how best to help themselves: "... your first time you just expect to have a long, long chat and to come away from there with you know, weird and wonderful instructions like stand on your head for half an hour and all this kind of stuff." (Female049 first interview). Not only were they disappointed with the absence of helpful hints, but the standard factual information they received was perceived as unhelpful. Advice on adopting a healthy lifestyle—diet, exercise, weight control, etc.—was irrelevant because they were already aware of such factors and, in most cases, had taken steps to improve their lifestyle. "... it just depends on your personal circumstances. I mean if you are a smoker, or a drinker, they are going to advise you to stop those sorts of things just to help out that. But because neither or us do that you know, they didn’t really have to tell us about that..." (Female037 third interview). 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. "He (the doctor) never gave us nothing to go away with. He never said, "Do this and do that." I would have got more information going home and going onto the internet or reading books." (Female103 interview1). That they were ‘disappointed’ not to receive more practical advice was one of the findings revealed to couples during the final interview. Ten of the 13 couples agreed that it was true, the others being pleased with the information obtained (2) or saying it was irrelevant in the case of a couple having ICSI. 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.
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. Those who had been diagnosed with specific conditions such as PCOS or endometriosis obtained information on possible treatments and support groups. Couples also evaluated alternative remedies on offer such as reflexology and acupuncture, with varying degrees of scepticism. A woman who had tried Chinese acupuncture and Chinese herbs said that she started to feel exploited. "I was going for...acupuncture every week, and I started to feel pressured into buying more and more herbs." (Female001 second interview). Several couples mentioned the opportunity which the internet provided for unscrupulous merchants to exploit vulnerable couples such as themselves. However, 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. Indicating that she had not been guided by the clinic, one woman said of the internet, "I found it most helpful, but that was just going and doing it myself... There’s quite a lot of good support groups on the internet you know... So you can talk to people in the same situation as you... if there are things that you don’t understand, you know people give advice or, you know what they’ve tried." (Female020 third interview). No support group was available in Aberdeen at the time of study. All couples were offered counselling, but only one man took up the offer after his partner miscarried. Others indicated that they might have used the counselling facility ‘had the need arisen’. 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.
Conceiving naturally
Couples largely hoped to be able to conceive themselves without having to go too far down the investigation/treatment route. Much of their information seeking and subsequent activity was directed towards this. However, couples were also influenced by success stories in common currency about pregnancies resulting from referral or investigation. Speaking of the investigations, one man said, "I think the dye test is probably better for us because we’re still young and you never know, over the next few months. ... . We still think we’ll do it naturally...You hear stories of people going and getting the tests done and then the following week falling pregnant ..." (Male054 first interview). Couples believed that passing responsibility onto the clinic might enable them to relax enough to conceive. Relaxation was seen as key to natural conception, and a number of women had changed to less stressful jobs in the hope of assisting conception. Couples also heard this from other people, "...you know everybody says, "Oh when you relax it just sort of happens." (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." (Female 103 third interview). Not all couples had hope of conceiving naturally but even those without, such as women with blocked tubes or men with poor sperm, sought information on how to enhance their chances of assisted conception. Hence, men gave up cycling and wore loose underwear and women gave up alcohol and coffee. As time passed, some of those who had initially hoped that referral alone might achieve pregnancy, found that the diagnosis, their age and the duration of infertility affected their perceptions of the likelihood of ‘doing it themselves’.
One reason that couples hoped to ‘do it themselves’ was the evidence that conceiving naturally provided of fertility. "Well, we got there by ourselves... It makes me pleased insofar as, if anything happens to this baby, I know that... I can get pregnant ... ." (Female033 second interview). Although a natural conception meant that couples could conceive again, they did not take this for granted and often expressed concern that they might experience difficulties in future. Those who had conceived as a result of clomifene treatment, similarly wondered if they would need it again to conceive another child. Another reason couples preferred to conceive without assistance was that infertility treatment was not seen as ‘natural’ because of its invasive nature but, as is illustrated by the following quotation, some types of treatment are seen as more unnatural than others. "...eight embryos came from the ten eggs so and that was just, it was natural. Well as natural as IVF can be. But it was just eggs, sperm and see what can be done. There was no, I think ICSI is when they force it." (Female108 third interview). A woman who had successfully undergone ICSI expressed concern about the long-term effects of such a procedure on the child, suggesting why its invasiveness might be seen as problematic.
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, even though they knew it was not likely. Describing the problem as being taken out of her hands, one woman described thinking, "They’ll get me pregnant. But then you realise that this is not always going to be possible." (Female049 second interview). One woman was unsure. Those who could not conceive without assistance were not asked to indicate its relevance to them.
Helping themselves
Those who became pregnant, whether spontaneously or as a result of treatment, often viewed their own efforts at information gathering and lifestyle change as contributing to their success. 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...my body was relaxed, which is what you are trying to do. The acupuncture must have worked... I had done all my sessions and stuff and then went to IVF. So yeah maybe it helped, you never know." (Female108 third interview). 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. "I think it was that dye test did something for me and that, because it was the month straight after {that I conceived}. Either that, or it was all the pineapples I ate that month. It was one or the other (laughs)." (Female103 third interview). Others felt that thinking positively or not entertaining the possibility of failure had helped, whether conceiving naturally or as a result of treatment. However, a man who had cut out strenuous exercise in an unsuccessful attempt to improve his sperm quality, said that his wife’s dietary changes must have been more influential. 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, perhaps enabling them to regain some control of the situation.
Couples who believed that they had helped themselves to achieve pregnancy were generally empowered by the experience. They regretted that clinic staff did not do more to encourage couples to help themselves. "...I know doctors don’t do a lot of alternative things, but it would be really nice, you know because like I say, it makes you feel empowered because you’re doing {something}. You are being proactive about it, instead of feeling like this is happening to us, you know." (Female118 third interview). Such empowerment is particularly important because infertility patients are largely the passive recipients of investigations and treatment, and spend a lot of time simply waiting—for appointments, for tests, for their next period and for results. These periods of waiting have contributed to what has been described as the emotional ‘rollercoaster’ of infertility treatment (Hertz, 1982). Consequently, they welcome anything that improves their mental state. "... there’s a lot of things online that are more things to help, ... basically to help how you think about it.... I don’t know if any of these things will actually work. But I think maybe they have realised that if people think that X, Y and Z will help, it helps them to be more positive about it." (Female 006 third interview). In retrospect, those who were successful were able to present ‘positive thinking’ as a successful strategy for helping themselves although at the time it was "...just the possibility of doing everything you can." (Female026 third interview).
The three couples who had not conceived by the time of the third interview did not feel they had done all they could. Typically, they blamed their poor lifestyle or lack of adherence to guidance, particularly when it came to losing weight. "... I had problems with... thinking that I was sabotaging my own chances... if I really wanted to do it I would have lost weight... I just felt it was some sort of failing in me as a person, and perhaps I didn’t really want to have a baby at all. And I started thinking I was going bonkers...." (Female039 third interview). Another who had not conceived also felt that other people would not understand the difficulties and would blame her for failing to lose weight. "... the weight is a huge issue for me and I know overweight people get pregnant but ... it’s just so difficult... people probably say, "Oh if you want something so badly, why can’t you lose the weight?" And ... it’s just a vicious circle ... because your period comes, you’re disappointed... And I’m a big comfort eater." (Female020 third interview). The third woman in this group had also mentioned during early interviews that she felt she should lose weight, but having conceived during IUI, no longer blamed herself for failing to do so. Men were also expected to lose weight or adopt a healthier lifestyle and two of the three in this group had done so. The one who had not, blamed himself for failing to eat a healthy diet but did not link it to the failure to conceive, possibly because he had been told that his ‘sperm were fine’.
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Discussion |
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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, encouraging them to look elsewhere for alternative sources including the internet. A general trend towards seeking health information online has been documented (Sillence et al., 2007
) and infertility patients reported to be active seekers of descriptive information and second opinions (Weissman et al., 2000; Huang et al., 2003; Tuil et al., 2007). This study suggests that some of patients’ information seeking is directed towards helping themselves to achieve a pregnancy, preferably naturally. Like Hjelmstedt et al. (2004), we found that couples see a natural conception as preferable for a number of reasons, including the ‘unnaturalness’ of assisted conception. Their search for helpful information also reveals to them the potential benefits of support groups and alternative therapies such as reflexology and acupuncture. Moreover, couples appeared to believe that this is an effective strategy. Those who became pregnant often felt that their actions might have helped, relaxing their minds and bodies sufficient to conceive. Those who were unable to help themselves, e.g. by losing weight, felt that they might have ‘sabotaged’ their chances of becoming pregnant. In the context of a longitudinal study, unsuccessful couples felt obliged to account for not having done what they could to maximize their chances of success. Their narratives may help them to accept the situation as Tennen et al. (1991) have suggested that causal explanations of infertility may enhance adaptation.
Couples did not suggest that their actions were a means of coping with a threatening or uncertain situation, but women’s search for information and support, and planful problem solving can be seen as such (Peterson et al., 2006). Knowledge of the outcome enabled them to reappraise the actions they had taken to help themselves and to present them as successful or not, or to choose the most successful from their repertoires. The effect of the narrative is to show respondents’ interpretive control (Tennen et al., 1991) because even those who did not become pregnant could have worked harder to achieve that goal. Though Letherby (2003) has argued that infertility patients’ ‘accumulation of information does not add up to knowledge’ (p.186) and may even contribute to feelings of lacking control, this did not appear to be the case for these respondents. However, as Wingert et al. (2005) have shown, some medical information patients obtain from sources such as the internet is inaccurate, raising the question of whether clinics should be doing more to debunk the myths about what can and cannot help couples conceive. A recent study by Robinson and Ellis (2007) described mistiming of intercourse as ‘a probable cause of failure to conceive’ in many couples, perhaps illustrating the need for basic factual information. Like Himmel et al. (2005), we identified a few couples who found the content of the internet alarming, but most used it selectively to gain information and seek support.
The study suggests that their efforts to help themselves often made couples feel positive and empowered. Even those with tubal damage or sperm problems, who had no hope of conceiving without assistance, believed that they could improve their chances of assisted conception by actions such as following dietary advice. This belief is important as loss of control is reported to be a common experience of infertility patients (Cousineau and Domar, 2007), and Segev and van den Akker (2006) have suggested that it may continue into their experience of parenthood, resulting in greater use of support networks or health and social care systems. Although Tuil et al. (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, 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. However, the downside of regaining some control was that those who failed, e.g. at following a healthy lifestyle or losing weight, felt psychologically diminished. 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.
The longitudinal nature of this study allowed couples’ changing perceptions of their experiences to be examined over time. However, this was a small, selected sample from an individual fertility centre, with a preponderance of a particular type of infertility. 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. Following couples naturalistically from before they were diagnosed meant there could be no control over the types and duration of infertility included. Hence, more couples than had been expected became pregnant and naturally left the study. Time constraints prevented further couples being added at a later date. More couples than is usual were diagnosed with unexplained infertility. As this group suffers from a lack of clarity regarding the cause of infertility, they are perhaps particularly keen to explore alternative options and to enhance their chances of conceiving. The results are not generalizable to a wider population, although it was evident that those who had no hope of conceiving by themselves nevertheless found ways, such as relaxation and positive thinking, to be proactive. Some may argue that one party tends to dominate a joint interview (Arksey, 1996), but this was an area of life where women seemed to take control. Several couples joked that the men were now following the healthy regime prescribed by their partner on the basis of her reading and research. Others have suggested that couples interviewed together may collude to produce a ‘public’ version of their story (Cornwell, 1984), but this was exactly what was required in this case and is also that typically presented at the fertility clinic (Leiblum et al., 1987; Franklin, 1990).
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Conclusion |
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The study has uncovered an important area that needs to be addressed at the clinical level as well as by means of further research involving representative samples. Couples, especially those with no obvious barrier to conception, want to help themselves to conceive, preferably naturally. Finding new sources of information and support can be empowering. Clinics must address patients’ needs for practical information and on-line support, protecting them from the more exploitative elements to which they are vulnerable. They must also accommodate the needs of those advised to make changes to their lifestyle but unable to do so, perhaps offering more active dietary advice or encouraging them to accept available counselling. Women especially may come to feel doubly a failure if neither weight loss nor conception is attainable and other ways to help themselves achieve a pregnancy are not on offer. Similarly, those who change lifestyle and still fail to conceive may need professional help to adjust.
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Appendix |
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Interview 1 Schedule: Aide Memoire
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References |
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Submitted on July 16, 2007; resubmitted on November 13, 2007; accepted on November 20, 2007.
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