Human Reproduction vol.14 no.5 pp.1384–1391, 1999

Why are infertile patients not using psychosocial counselling?

J.Boivin1,4, L.C.Scanlan2 and S.M.Walker3 1School

2Cardiff

of Psychology and Law School, Cardiff University, PO Box 901, Cardiff CF1 3YG and 3Department of Obstetrics and Gynaecology, University of Wales, College of Medicine, UK 4To

whom correspondence should be addressed

The purpose of this study was to examine the sources of support that infertile patients relied on when distressed, and the factors that prevented them from using psychosocial counselling. The sample consisted of 143 infertile patients (49 couples plus 45 additional women) who were in their mid-thirties and had been infertile for approximately 6 years. Before their clinic appointment, participants completed (anonymously) a short questionnaire concerning various sources of support and factors related to the uptake of counselling. The results showed that patients relied primarily on their spouse and family when distressed, rather than on formal support resources such as psychosocial counselling. The principal reason preventing patients from using counselling varied as a function of current distress level. Less distressed patients reported that the coping resources available to them were sufficient to cope with the strains of infertility, while the more distressed patients failed to initiate contact with a counsellor because of practical concerns such as knowing who to contact and/ or the cost of counselling. The findings of this study indicate that alternative ways of intervening with infertile patients would need to be developed, as few use the type of psychosocial services most frequently offered. Key words: counselling/infertility/in-vitro fertilization/psychology/stress

Introduction Numerous studies have documented the distress that patients can experience as a result of their infertility or its treatment (for comparative reviews, see Wright et al., 1989; Edelmann, 1990; Mazure et al., 1992). Bombadieri and Clapp (Bombadieri and Clapp, 1984) have recommended two types of intervention to clinics to help patients better manage the strains of undergoing treatment: psychosocial counselling, and documentation. The intervention that has received by far the most attention has been the provision of psychosocial counselling (support and therapeutic), either in an individual and/or couple format, or as a support group format. In fact, the Human Fertilisation and Embryology Authority (HFEA) which regulates assisted reproduction in the UK has stipulated that psychosocial 1384

counselling must be offered to any patient seeking in-vitro fertilization (IVF) or donor insemination (HFEA, 1995, p. 31). As described in the HFEA code of practice, the purpose of counselling is to provide patients with emotional support in times of crisis, and to help them come to terms with their treatment choice and its effect on their lives (HFEA, 1995, p. 32). Such recommendations follow those of regulatory bodies in other countries (Bruhat, 1992), various associations involved in the care of infertile couples both at a professional (Blyth and Hunt, 1995) and community (e.g. RESOLVE, ISSUE, CHILD) level as well as those of numerous clinical papers on the psychological care of patients undergoing infertility treatment and/or IVF (Bresnick and Taymor, 1979; Menning, 1979). Moreover, the recommendation is consistent with the interest that patients themselves have expressed in receiving more psychosocial help during treatment (Laffont and Edelmann, 1994; Sundby et al., 1994; Souter et al., 1998). Despite unanimity of opinion among these various professional and patient groups regarding the necessity and potential benefit of psychosocial counselling, very few patients actually use this service when it is made available to them. Prospective (Paulson et al., 1988; Shaw et al., 1988) and retrospective (Pepe and Byrne, 1991; Laffont and Edelmann, 1994; Sundby et al., 1994) studies have shown that only about 18–21% of patients offered counselling decide to attend individual or couple sessions when these are made available. In a survey of licensed infertility clinics in the UK (Hernon et al., 1995) it was found that in two-thirds of clinics, ,25% of patients took up the psychosocial services offered. Similar reports have been made with regard to participation in infertility support groups. One study found that, although 80% of patients knew of their local infertility support group, ,5% were members (Sundby et al., 1994). The low take-up rate for such services should not be interpreted as a lack of interest in psychosocial support services on the part of patients. A review (Boivin, 1997) showed that patients believed that psychosocial counselling would be beneficial and most—especially among women—believed they would have used such services if offered during treatment. Moreover, the results of several studies on patient satisfaction with IVF centres also suggests that many patients are dissatisfied with the psychosocial services offered before, during and/or after treatment (Sabourin et al., 1991; Laffont and Edelmann, 1994; Sundby et al., 1994; Souter et al., 1998). In view of these paradoxical findings, it would be important to identify the factors that may prevent patients from using the psychosocial services offered to them. Little is known of the factors which may affect uptake of counselling services. We know that patients who attend support groups (Berg and © European Society of Human Reproduction and Embryology

Why are patients not using psychosocial counselling?

Wilson, 1991a) or request counselling (Laffont and Edelmann, 1994) tend to experience more personal and/or marital distress than those who do not. In addition, those who drop out of counselling tend to experience less distress than those who continue with sessions (Stewart, 1992). These findings would suggest that distress level partly determines which patient uses counselling (Boivin, 1997). However, we also know that more patients can be recruited into support groups if they are contacted personally and if the merits of counselling are presented on a one-to-one basis rather than through notices or letters (Goodman and Rothman, 1984; Pengelly et al., 1995). Moreover, patients generally find counselling beneficial when they can be persuaded to attend (Connolly et al., 1993; Hernon et al., 1995). These findings would suggest that patients may also feel awkward about contacting a counsellor, or unsure of the potential benefits of such services. Other possible factors preventing patients from using counselling may include concerns about privacy, fears that they may be perceived as emotionally and/or mentally unstable or abnormal in some way if they consult a counsellor, or practical concerns such as the cost or scheduling of sessions (Hernon et al., 1995). The purpose of the present study was to obtain more information on the psychosocial help that patients relied on when distressed, and to explore the factors which may contribute to the poor uptake of psychosocial counselling. Materials and methods Patient sample A total of 143 patients (49 couples plus 45 additional women) attending an infertility clinic in South Wales participated in the study. Women (mean age 32.3 6 5.3 years) and men (mean age 34.1 6 7.1 years) were in their mid-thirties and had been infertile for approximately 6.2 years. Of the 72.4% (n 5 63 out of 87) of patients in treatment, 19.0% (n 5 12 out of 63) were undergoing ovulation induction, 36.5% (n 5 23) inseminations (husband or donor sperm), and 38.1% (n 5 24) IVF. Materials The 10-item psychosocial questionnaire was designed specifically for this study to obtain information on support networks and use of counselling (questionnaire available upon request). Patients were asked to report on the sources of support on which they had relied when experiencing infertility-related distress. Patients indicated whether they had used eight sources of support in the past, and the extent to which each had been useful on a 5-point Likert rating scale (1 5 not at all helpful, ranging to 5 5 extremely helpful). A standard weighting was calculated by multiplying the percentage of people in the sample who had used the source of support with its helpfulness rating. The purpose of this weighting was to determine which source of support was rated highest in providing adequate help for most people. The standard weighting ranged from 0 to 5, with lower scores obtained when few people used the source of support, or most individuals rated it as unhelpful. Patients were also asked to rate how likely they would be to consult a counsellor or attend a support group if these services were made available to them. These variables were assessed on a scale of 1 (not at all likely) to 5 (extremely likely). Patients were asked to rate the factors that contributed to their decision not to use psychosocial counselling. Patients rated, on 5-

point Likert-rating scales, the importance of 10 factors in preventing them from making an appointment with a psychologist or counsellor when they experienced infertility-related distress. The prominence of psychosocial factors in patients’ experience of infertility was also examined. Patients indicated, on 10-point Likert rating scales: (i) the extent to which they worried about the medical and psychological aspects of infertility (1 5 ‘not at all worried’ to 10 5 ‘extremely worried’); (ii) the degree of distress they would need to experience to see a counsellor (1 5 ‘not at all distressed’ to 10 5 ‘so distressed I could not carry out my daily activities’); and (iii) their current distress level (1 5 ‘not at all distressed’ to 10 5 ‘so distressed I cannot carry out my daily activities’). Procedure When patients arrived at the fertility clinic they returned their appointment card to the receptionist and received the patient survey. The introductory letter described the purpose of the study, and requested patients to complete the survey anonymously, as well as separately from their spouse (if present). Patients completed the questionnaire in the waiting room, before their medical appointment, and returned it to a marked collection box placed in the waiting room. Although questionnaires were distributed to all patients attending the clinic over a period of several months, the actual number of questionnaires distributed was not recorded. Therefore, data about participation rate and the characteristics of patients who chose not to complete the survey are not available. Furthermore, it is not known why the partners of the 45 additional women did not complete the questionnaire, that is, whether it was because the partner was not present or because he refused to complete it. All we can generally say about these women is that they were in stable heterosexual relationships of at least 2 years’ duration, as this is a requirement for treatment at this clinic. Statistical analysis The factor analysis was carried out using women’s data only, since the sample size for men was too small for this type of analysis. The unit method was used to calculate factor scores, as recommended by Cohen and Cohen (Cohen and Cohen, 1983). In this method, each item is standardized and multiplied by –1 or 1 (depending on the sign of its loading on the dimension), and each variable contributing to the dimension is averaged to produce the factor score. Original variables are converted to standardized scores so that variables with larger standard deviations do not have greater weight in the calculation of the factor score.

Results Sources of support The sources of support and percentages of patients who used each source of support are presented in Table I. Although patients were given the opportunity to list additional sources of support, none mentioned their family doctor or general practitioner. The most frequently used sources of support for both men and women were informal, that is, talking with the spouse, family and friends and using documentation on the emotional aspects of infertility obtained through the clinic, newspapers or television programmes. The percentage of patients who used formal sources of support such as a psychologist/counsellor or support groups was ø11% for both men and women. All sources of support were found to be at least moderately helpful when couples were feeling distressed. 1385

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Table I. Percentage of patients who used each source of support, mean (6 SD) helpfulness rating and weighted rating for each source of support for women (n 5 94) and men (n 5 49) Source of support

Percent used (n)

Women Psychologist/counsellor 8.5 (8) Support group 11.7 (11) Spouse 70.2 (66) Family/friends 66.0 (62) Media on emotional aspects of infertility in clinic material 43.6 (41) library 22.3 (21) newspapers 51.1 (48) television 59.6 (56) Men Psychologist/counsellor 6.1 (03) Support group 2.0 (01) Spouse 57.1(28) Family/friends 40.8 (20) Media on emotional aspects of infertility in clinics 26.5 (13) library 6.1 (03) newspapers 34.7 (17) television 46.9 (23) aHelpfulness rating is a 5-point Likert scale, ranging from bWeighted rating 5 percent used3helpfulness rating.

On average, women had used significantly more sources of support than men (t 5 7.87, P , 0.001). However, there was no difference in the helpfulness ratings of men and women, except for a tendency for women to rate discussions with family and friends as more helpful than their partners (t 5 1.89, P , 0.10). Using the standard weighted rating, the rank order for the different sources of support were: spouse, family/ friends, media information, library books, counsellors and support groups. The rank was similar for men, except that discussion with families and friends was rated lower than media information. Factors contributing to low uptake of psychosocial counselling Patients were asked to rate the extent to which each of 10 items prevented them from making an appointment with a psychologist/counsellor. As items were correlated, factor analysis was used to reduce the number of variables to a smaller set of less related factors. Summary statistics for the factor analysis and means for each factor are shown in Table II. Three factors were extracted (using an orthogonal rotation) accounting for a total of 58.2% of item variance. The first factor consisted of items related to patients’ comfort level with the counselling format and accounted for 29.7% of variability (labelled ‘Comfort level’). The second factor consisted of coping resources available to patients and their ability to manage the strains of infertility (labelled ‘Coping resources’). This factor accounted for 16.7% of item variance. The final factor accounted for 11.8% of variance and consisted of items related to practical concerns about arranging a meeting with a psychologist/counsellor (labelled ‘Practical concerns’). It is noteworthy that the item ‘Counselling would not help’ loaded significantly on all factors. The perception that counselling would not help was positively related to the importance of 1386

Helpfulness rating (SD)a

Weighted ratingb

3.98 3.18 4.23 3.65

(1.4) (1.5) (0.9) (1.2)

0.34 0.37 2.97 2.41

3.76 3.14 3.33 3.73

(1.1) (1.4) (1.1) (1.2)

1.64 0.70 1.70 2.22

2.67 (1.5) 5.0 (–) 4.29 (0.8) 3.05 (1.2)

0.16 0.10 2.45 1.24

3.46 2.67 3.00 3.65

0.92 0.16 1.04 1.71

(1.3) (1.5) (1.2) (1.0)

1 5 ‘not at all useful’ to 5 5 ‘extremely useful’.

Table II. Percentage of variance accounted for, eigenvalue and factor loadingsa for each item of the decision-making scale (women, n 5 94) Item

Comfort level

Coping resources

Percentage of variance Eigenvalue

29.7 2.97

16.7 1.67

Too shy or scared Only mad people need a counsellor I would feel awkward Do not feel the need Can cope with distress Sufficient support from close ones Counselling would not help Cost of session Who to contact Difficulty scheduling sessions aOnly

Practical concerns 11.8 1.18

0.821 0.768 0.723

0.342 0.421

0.771 0.732 0.699 0.590

20.388 0.718 0.668 0.486

significant loadings (.0.30) are shown.

coping resources and comfort level about using such services, but was inversely related to practical concerns. A one-way repeated measures analysis of variance (ANOVA) was computed on scores derived from each factor to identify differences in the relative importance of each factor in preventing patients from scheduling an appointment with a psychologist/counsellor. The ANOVA was carried out separately for men and women and was significant for both: women [F(2, 172) 5 14.46, P , 0.001] and men [F(2, 90) 5 12.92, P , 0.001]. Simple comparisons showed that comfort level was significantly less important in preventing women from consulting a psychologist/counsellor than either coping resources [t(86) 5 6.93, P , 0.001] or practical concerns [t(86) 5 7.11, P , 0.001]. There was no difference in importance between coping resources and practical concerns [t(86) 5 0.02, P . 0.10]. Similarly, men reported comfort

Why are patients not using psychosocial counselling?

level as a significantly less important factor in preventing them from using counselling than coping resources [t(44) 5 5.49, P , 0.001] or practical concerns [t(44) 5 5.90, P , 0.001]. There was no significant difference between the importance of the latter two factors [t(45) 5 0.16, P . 0.10]. A comparison of couples’ scores on each decision-making factor showed that husbands and wives did not differ significantly in their ratings of the importance of comfort level [t(42) 5 0.43, P . 0.10], coping resources [t(42) 5 0.31, P . 0.10] or practical concerns [t(42) 5 0.75, P . 0.10]. Prominence of psychosocial factors A comparison of patients’ worry about medical and psychosocial aspects of infertility revealed that women were significantly more concerned about the psychological aspects of infertility (mean 6 SD score, 6.6 6 2.6) than the medical aspects (5.64 6 2.7) [t(93) 5 4.37, P , 0.001]. Men were also more worried about the psychological aspects of this experience (5.73 6 3.1) than of its medical aspects (5.12 6 3.0) [t(48) 5 2.23, P , 0.05], but the difference was less pronounced than for women. Patients were asked to indicate their current distress level and the level of distress they would need to experience before they sought the help of a counsellor. Women felt significantly less distressed now (5.15 6 2.6) than they would need to be (7.21 6 2.5) to seek the help of a psychologist or counsellor [t(93) 5 6.09, P , 0.001]. However, 19.1% (n 5 18) of women had reached or surpassed the level of distress at which they would want to consult a counsellor. Overall, men also reported that they were less distressed now (3.98 6 2.7) than they would need to be to seek the help of a psychologist/ counsellor (6.73 6 3.1) [t(40) 5 4.78, P , 0.001]. However, six men (14.6%) felt they had reached (or surpassed) the distress level at which they would want to consult a psychologist. Since the factors that may prevent patients from seeking counselling may differ as a function of current distress, we examined this issue more closely in women. Patients were categorized into a Low or High distress group on the basis of their scores on the 10-point current distress scale. Patients who scored ø3 were assigned to the Low distress group (n 5 26), while those scoring ù7 were assigned to the High distress group (n 5 24). Current distress level was therefore meaningfully and statistically different [t(48) 5 23.86, P , 0.001] between women assigned to either the Low (1.89 6 0.9) or High (8.28 6 1.1) distress groups. Summary statistics and t-test results comparing the two groups on demographic and psychological variables are presented in Table III. The two groups were comparable in terms of age and years of infertility, as well as the level of distress they perceived necessary to consult a psychologist or counsellor. However, women in the High distress group were significantly more concerned about both the medical and psychological aspects of infertility than were women in the Low distress group. In addition, significantly more women in the High distress group (78.6%, n 5 22) than in the Low distress group (14.8%, n 5 4) reported that they had reached or exceeded the level at which they would want to consult a psychologist [t(53) 5 7.83, P , 0.001]. A comparison of patient use of various

Table III. Means (6 SD) for demographic and psychological factors as a function of distress group Variable

Low distress (n 5 26)

High distress (n 5 24)

t (d.f. 5 48)

Age (years) 31.89 (3.9) 32.25 (4.9) 0.30 Years infertile 6.24 (3.5) 6.48 (3.81) 0.23 Concern; medical aspects 3.14 (2.1) 7.43 (2.2) 7.45*** Concern; psychological aspects 4.03 (2.1) 8.42 (1.8) 8.39*** Consultation distressa 6.71 (2.8) 7.51 (2.2) 1.19 Likelihood would consult counsellor 2.50 (1.3) 4.00 (1.2) 4.45*** Likelihood would attend support group 1.83 (1.0) 2.84 (1.5) 2.69** aDistress level perceived as sufficient to consult with a psychologist or counsellor. Significant difference between groups: **P , 0.01; ***P , 0.001.

Figure 1. Mean factor scores as a function of distress group.

sources of support showed that the Low and High distress groups were equally likely to have consulted a psychologist (7.4% and 3.6% respectively) and/or attended a support group (14.9% and 14.3% respectively) in the past. However, the two groups differed significantly in terms of their ratings of the likelihood of consulting a psychologist or attending a support group in the future. Patients in the Low distress group reported that they would be unlikely to use such services, while patients in the High distress group would be likely to use such services. A 2 (Group)33 (Factor: Comfort level, Coping resources, Practical concerns) analysis of variance (ANOVA) with Factor as a repeated measure was computed to determine whether the Low and High distress groups differed in terms of the factors that prevented them from consulting with a psychologist or counsellor. Mean scores for this analysis are plotted in Figure 1. A significant main effect of Factor was qualified by a significant Group by Factor interaction [F(2, 96) 5 10.46, P 5 0.001], indicating that the importance attached to each factor differed depending on the level of distress. Simple main effects tests were computed to determine the source of the interaction. These post-hoc tests revealed that women in 1387

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the High distress group rated practical concerns as significantly more important than coping resources [t(23) 5 2.14, P , 0.05] or comfort level [t(23) 5 3.33, P , 0.001] to their decision not to consult a counsellor/psychologist. In the Low distress group, women rated coping resources as significantly more important than comfort level [t(25) 5 8.00, P , 0.001] or practical concerns [t(25) 5 3.60, P , 0.001] in their decision-making. We could not compute this analysis with men as too few (8%, n 5 4) reported a high level of distress. Discussion In this study, only 8.5% of women and 6.1% of men had sought counselling in the past, with more women (11%) and fewer men (2%) having some experience with support groups. While this level of uptake was consistent with those of previous infertility studies (Paulson et al., 1988; Laffont and Edelmann, 1994; Sundby et al., 1994; Souter et al., 1998), it was lower than would be predicted from the emphasis placed on this type of service among patient and professional groups involved with infertility clinics (Blyth and Hunt, 1995; HFEA, 1995). The study findings suggest two possible explanations for the discrepancy between interest in and actual use of counselling. One possibility is that uptake is low because patients do not consider themselves sufficiently distressed to need this type of service. In this sample, ,20% of men and women stated that their distress level exceeded the level at which they would consider initiating contact with a psychologist. Average factor scores also showed that most patients felt that their ability to cope and/or their coping resources were sufficient to manage the strains of infertility. Indeed, the majority of patients reported that they had sought and been able to receive good help from informal sources of support (i.e. spouse, family and friends). Finally, the intention to use counselling was dependent on the level of distress, with highly distressed patients more likely to say they would use this service in the future. These data suggest that distress partly determines who will use counselling. While infertility can be quite distressing for patients, external support from family and friends, new treatment opportunities and other experiences can all mitigate emotional distress such that few patients ever reach the point of needing professional care. As Boivin (Boivin 1997) suggested, patients consult psychologists because they cannot manage their distress, rather than because they experience it. These findings would provide some support for two different theoretical models within the domain of health psychology. The hierarchical–compensatory model of seeking social support proposes that professionals are consulted only when individuals cannot find support among their own network of family and friends (Cantor, 1979). As mentioned, patients in this study were more likely to have used sources of support connected to people with whom they would have had closer relationships (e.g. spouse, family) than those involving more formal organizations (e.g. counsellors, support groups). Thus, patients may not consult with psychologists/counsellors because the support they receive from their close network is sufficient for the level of distress they experience. The health belief model 1388

(Rosenstock, 1966) proposes that the likelihood of using health services such as counselling is a function of the perceived severity of the distress, and the extent to which such services are thought to be beneficial. As noted, the majority of patients in this sample did not believe that the level of distress they experienced warranted a consultation with a psychologist, while patients who generally felt that their coping resources were sufficient did not perceive that counselling would actually help to cope with infertility. Another possible explanation for the discrepancy between apparent need and uptake rate of counselling—at least in some patients—is the possibility that patients do not know how to obtain this service. Among the most highly distressed patients in our sample, practical concerns were endorsed as the most important reasons why a counsellor or psychologist was not consulted. It is noteworthy that almost all these patients (approximately 80%) had reached or exceeded the level of distress at which they actually would consult a mental health professional. Moreover, the majority of these patients stated they would be likely to use this service if it were provided. Practical concerns included the perceived difficulty of scheduling sessions, a lack of knowledge about who to contact, or—as found in previous work—the potential cost of sessions (Hernon et al., 1995). The emergence of this factor was particularly worrisome to our clinic because we felt that we had provided sufficient information on posters placed in the clinic and pamphlets distributed to patients for such concerns to be minimized. Indeed, counselling appointments were available in the evening and were free of charge. It is unclear why patients experiencing high levels of distress were unable to use this information. Perhaps symptoms of depression or anxiety made it difficult for these patients to take advantage of this information (Suls and Wan, 1989). Alternatively, it may be that for uptake to occur, such contact must be initiated by the counsellor rather than by the patient. Goodman and Rothman (Goodman and Rothman 1984) reported that an offer advertising the start of an infertility support group at their clinic yielded few responders until clinic staff contacted patients individually to explain the potential benefits of these groups. The study also revealed other important findings with regard to support resources. Interestingly, couples also sought support from written documentation on the emotional aspects of infertility provided in clinics, as well as such information provided through the media. This mode of intervening with patients remains unexplored despite the fact that many patients have requested more written psychosocial information in past surveys (Laffont and Edelmann, 1994; Hernon et al., 1995). In this study, almost 50% of women had used written clinic documentation, newspaper articles and/or television documentaries on the emotional aspects of infertility as a way of coping with this medical problem and/or its treatment. While documentation and information in the media would seem unlikely to provide some aspects of support (e.g. comforting), these may fulfil other important support functions. For example, television documentaries on couples undergoing IVF were watched by many of our patients, who commented that they felt reassured in discovering they were not the only ones

Why are patients not using psychosocial counselling?

having difficulty coping with infertility. In addition, many felt such documentaries or articles helped their families and friends better understand the impact that infertility was having on their lives. These findings would suggest that the importance of psychosocial documentation, whether developed by the clinic or provided by the media, should not be underestimated, as it is readily used by patients and can be a cost-effective way for the clinic to provide psychosocial services to patients. Another noteworthy finding was the similarity between men and women on a number of support and emotional variables. This finding was somewhat inconsistent with previous studies examining gender differences in the experience of infertility (Berg and Wilson, 1991b). Men are generally perceived as being less concerned about psychological issues than women, primarily because they report less distress than women. While this was also true in this sample, as more women (26%) than men (17%) reported high distress, the similarity on other indices cannot be ignored. The principal sources of support listed by men and women were for the most part similar, and both men and women indicated being significantly more concerned about the psychological aspects of infertility than its medical aspects. The factors considered to be more important in decision-making about counselling were also the same for men and women. Finally, a comparable number of men (16%) and women (19%) felt more distressed now than they would need to be to consult a psychologist and/or counsellor. It has been argued that, in many infertility studies, the focus on intensity of distress rather than other markers of psychological need may mask the similarities between men and women in their reactions to infertility (Boivin et al., 1998). For example, most studies use adjustment questionnaires (depression, anxiety) which are based on symptoms (e.g. sadness, crying), which may be more relevant and thus better able to detect distress in women compared to men. The use of less-biased questions and/or the use of analyses that focus on the pattern of reactions across gender might be more useful in future studies, as these may yield new information that goes beyond the well-established finding that women have more intense negative reactions to infertility. One limitation in the study design is noteworthy. Questionnaires were distributed to patients as they arrived at the clinic, but the number distributed over the period of the study was not monitored. Hence we do not know the participation rate, nor do we know anything about those patients who chose not to complete the questionnaire. While this method of data collection is convenient in a busy fertility clinic, it may not necessarily yield a sample from which study results can be generalized to other samples. However, the demographic and medical information collected showed that this sample was similar in age and type of treatment to our patient population, as well as to that of patients participating in other studies carried out by the authors (Boivin and Takefman, 1996). Some study results were also consistent with well-established findings in the literature, for example, low uptake of counselling, higher distress in women compared with men, helpfulness of support from spouse and family. Taken together, these results would suggest that our sample was representative of infertile patients in general. Finally, because the questionnaires were completed

anonymously, it seems reasonable to propose that there was no systematic psychological difference between those who chose to complete the questionnaire and those who did not. Recommendations and directions for future research Several recommendations and directions for future research can be made on the basis of the findings from this study. However, it should be noted that these recommendations do not apply to patients using donor gametes, as such patients would require a thorough discussion of the psychological issues specific to this treatment type (Brewaeys et al., 1997). The most frequently recommended intervention in previous studies and among regulatory bodies has been individual and/ or couple psychosocial counselling. As mentioned, the HFEA defines psychosocial counselling as the provision of emotional support in times of crisis (support counselling) and the provision of interventions aimed at helping people cope with and resolve their feelings about infertility (therapeutic counselling) (HFEA, 1995, p.32). However, given that ,15% of patients use this type of service, there is a great need to identify alternative methods of meeting the goal of providing psychosocial services to infertile patients. One way in which this goal could be achieved would be to adopt a two-tier approach to psychosocial services which would aim to provide written information on the emotional aspects of infertility to the majority of less-distressed patients, with counselling offered only to the more-distressed patients (Boivin, 1997). Such documentation might include common emotional reactions to various aspects of infertility and/or its treatment and ways of coping with these reactions. The results of this study showed that written information was perceived to be helpful and, alongside other informal sources of support, sufficient for most patients. Moreover, patients were found frequently to use written psychosocial documentation developed by clinics or obtained in the media. Clinics could therefore exploit patients’ desire for ‘take-home’ information by providing patients with booklets, pamphlets and other non-verbal formats concerned with psychological information. Unfortunately, relatively few sources of simple and easy-to-read lay-publications exist on psychological aspects of infertility and further information, especially psychological information specific to each type of infertility treatment, would need to be developed. This could perhaps be a task that clinic staff could accomplish in collaboration with local infertility support groups and other community associations involved with infertile couples. There have also been relatively few studies devoted to an evaluation of written interventions, as most evaluative studies have focused on the effectiveness of counselling. The two studies that do exist however, indicate that it could be a promising intervention if provided at the right time (Wallace, 1985; Takefman et al., 1990). Hence, future research could be concerned with developing and evaluating psychosocial documentation as an intervention for infertile couples. While psychosocial documentation may be sufficient at most times and for most patients, such an approach may not meet the demands of the more highly distressed patient. In such cases, it may be necessary to enlist the assistance of individuals trained in both psychology and infertility counselling. The 1389

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level of psychological training would be particularly important, as there is some evidence that infertility patients who seek counselling may have other psychological issues to deal with. Appleton et al. (1992) found that, of the infertility patients referred for psychological counselling by the medical team, 53% discussed issues during therapy which were related to life-long difficulties coping with stressful events rather than issues specific to infertility. The type of psychosocial service offered to this smaller percentage of patients, approximately 15%, would be individual, couple and/or group therapy where reactions to infertility would be explored in greater depth and over a longer period of time. Work by Pengelly et al. (Pengelly et al., 1995) suggests that the majority of these couples will use between one and three sessions of counselling. Clinics should be aware however that patients are reluctant to use counselling, even though they may recognize the need for it. Counsellors must therefore make every effort to contact such patients individually to discuss the potential benefits of using counselling and/or participating in support groups. One important research implication of the previous recommendation is that future research would need to be directed at how best to determine the need for counselling among patients. All the estimates used thus far (i.e. clinical ‘caseness’, level of distress and patient interest in counselling) would seem to overestimate the number of patients who actually use psychosocial services. Indeed, among patients in this study, 48% said they would use counselling in the future, yet less than 15% had done so in the past, despite the fact that this service was freely available at the clinic. Two issues seem to be related to the question of who would use counselling. First, distress on its own may not be the best marker of counselling need, as such distress is expected in response to a major life event such as infertility (van Balen et al., 1993; Slade et al., 1997). What seems to be the more critical issue is matching intervention and emotional need. It would seem that for individuals with good coping resources (whether internal or external), written psychosocial information might be enough— if provided at the right time—to cope with the intense emotional reactions that infertility might provoke. However, for those whose coping resources are inadequate and/or depleted, such an intervention might not be sufficient to prevent reactions from becoming overwhelming. A second important issue related to who uses counselling is the wish for ‘back-up help’ should coping resources become depleted. For most patients, infertility is a crisis situation which stretches the limits of both their internal coping resources and external support resources. While patients may feel they currently cope with the distress they experience, they may also be worried about not always being able to do so. As a result, they may want reassurance that psychosocial services would be available if needed, even though such services may never be used. We must therefore keep in mind that when patients are asked whether they would use counselling, that their response may reflect potential need rather than actual need. While we may think that the best psychosocial approach to infertility is to provide counselling to all patients, the reality of resource-limited health services makes this option unrealistic, while patients’ general approach to coping with stressful events 1390

makes it unnecessary. The exploration of the research and practical issues raised in these recommendations may help clinics to identify the minority of patients who would need and actually use counselling, and would help guide clinics in the development of cost-effective and beneficial psychosocial services for the majority of patients who would not be inclined toward using counselling. Acknowledgements We gratefully acknowledge the help of Janita Hill and June Parfitt in the distribution of questionnaires.

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