RESULTS
Fully comple ted surveys were received from 589 respondents. 99.1 of those responding were female. Respondents were drawn geographically from 47 states and 14 foreign countries. The correlation between 1995 state population size and number of surveys received from each state indicated a statistically significant relationship (r=.91 n=51, p<.001) suggesting that response patterns followed expected return rates based on state population size. Thirteen percent of those responding (n=75) were uncertain about whether Internet forums were their only outlet for talking about infertility. These individuals were not included in the analysis.
Table 1 presents the demographic characteristics of OO’s and AO’s. Both groups appear to be young, female, married for about 5 years, and college educated. Most have been pregnant but few have given birth and even fewer have adopted. The main differences between the groups is that a greater proportion of OO’s than AO’s are non-college educated, have no health insurance coverage for infertility, and have a lower household income. Both groups have spent similar amounts of their own money, (OO’s $4,880, AO’s $4,996) on diagnosis and treatment.
About three quarters of each group is currently undergoing diagnosis or is in treatment. The reported diagnoses (see Table 2) roughly parallel the percentage distributions of diagnoses for patients undergoing ART as described in the 1997 SART statistics. Proportions of male factor, uterine factor, and endometriosis diagnoses are quite comparable to the proportions in the SART statistics. Ovulatory problems and unexplained infertility are more prevalent diagnoses in each of these groups than in the ART clinic populations. Both OO’s and AO’s are very comparable in the treatments they have undergone. About twice as many patients in each of the groups have done Intrauterine Inseminations using injectable medications as have done IVF, GIFT, or ZIFT procedures.
Compared with AO’s, OO’s spend more hours per day on the Internet for any activity and more hours on the Internet for infertility related activity (see Table 3). Both groups participate more on INCIID infertility forums than on non-INCIID newsgroups or mailing lists. About one fifth of OO’s and AO’s participate passively – reading, but neither replying nor posting original messages. A larger proportion of AO’s avoid participation in any INCIID support boards. The two groups also differ in numerous reported social and emotional consequences of participation.
Both groups report that their participation has had important cognitive, behavioral, and relationship consequences. Significant differences in reported consequences include switching from an OB/GYN to a reproductive endocrinologist (OO 28%, AO 19%), learning how to deal with physicians (OO 46%, AO 32%), but also decreasing communication about infertility with partner (OO 22%, AO 7%).
Compared to AO’s, OO’s are more depressed, consider infertility more stressful, report poorer coping strategies for dealing with infertility, worry more, are less satisfied with important relationships, and perceive that they receive less support( see Table 4) Because other research has shown that the costs of infertility contributes to stress, we looked at the correlation between reported stress and income level as well as between reported depression and income level. Results indicate that the lower the income the greater the depression (r= -.22, p=.000) and the lower the income, the greater the perceived stress of infertility (r= -.18, p=.000).
Prior research found that the greater the number of hours per week spent using the Internet, the higher the level of depression. We conducted a multiple regression analysis, using income and log time spent on the Internet as predictors of depression. For the entire group (OO’s and AO’s), income significantly predicted depression ( b =-.-213, t=-4.53, p=.000 ) but time spent on the Internet did not predict depression. We then conducted separate regression analyses for OO’s and AO’s. For OO’s, neither income nor time predicted depression. For AO’s, Income, but not time predicted depression ( b =-.-286, t=-4.72, p=.000)
DISCUSSION
Our study is valuable in monitoring emotional reactions to infertility since it uses a sample that differs from the modal sample used to study these questions. Typically, these samples are drawn from populations at clinics that perform assisted reproductive technology. A comprehensive review of the literature examining samples used in empirical studies on the effects of infertility finds that most samples were obtained from patients at IVF clinics. The sample obtained in the present study is younger and much less involved in those treatments which have the highest odds of leading to a pregnancy. It is important to temper the knowledge obtained from IVF patients with information obtained from the broader population of infertile women.
Both OO’s and AO’s are comparable in diagnostic procedures they have used. Three quarters or more of each group is currently undergoing testing or treatment. The majority of each group has had hormonal testing, used BBT’s and ovulation predictor kits to monitor ovulation, had an HSG, and have a partner who has had a semen analysis. The majority of each group has been pregnant but few in either group have given birth. A substantial number have miscarried, nearly half of the AO’s and about one quarter of the OO’s. Both groups are comparable in the relatively small proportions of each group who have done either IVF, GIFT, or ZIFT procedures. Approximately 1/3 of each group has had intrauterine inseminations.
The two groups differ in several aspects of their Internet activity. Not surprisingly, since these women responded to a survey posted on the INCIID website, most of their infertility Internet activity is confined to visiting INCIID sponsored forums. Neither group is very active with non-INCIID newsgroups or mailing lists. Both groups participate more on INCIID medical boards than on INCIID support boards and a substantially larger proportion of AO than OO’s do not participate at all in INCIID support boards. Also, approximately one quarter of each group are passive participants on both the medical and support boards – reading what others post but neither responding to posts or initiating new posts.
A large proportion of both groups report numerous ways in which their Internet participation has been helpful to them. The pattern of what they consider to be beneficial demonstrates an interesting contrast between the two groups that is reflective of the different emotional profiles of the two groups. Generally speaking, OO’s seem to be saying that they have received validation from others to withdraw from important real-world interactions and turn to their Internet contacts for dialogue and support. Thus, for example, more OO’s than AO’s report that an important benefit for them is getting permission to avoid awkward social situations as well as gaining the support and approval of others to avoid talking with “fertile others.” More OO’s than AO’s report that they have become less inclined to talk to their partner. And if, presumably their partner has been upset by this behavior and critical, they report that others have helped them feel that they are not “crazy” for feeling as they do and that men and women have different feelings about infertility.
Also, compared with AO’s, more OO’s report that they value these forums for allowing them to share their signs and symptoms, to share news about their treatment, and to provide help and comfort when they feel depressed. Quite possibly, AO’s have face-to-face outlets where they can do these things rather than relying on Internet forums to provide the venue to meet these needs.
Our sample, both OO’s and AO’s are moderately depressed, considerably stressed, and only moderately happy. These negative reactions are generally more severe for OO’s than for AO’s. More than one-quarter of each group can be considered moderately or severely depressed with 40% of OO’s meeting these criteria. The research methods of the present study preclude causal explanations for these differences. We know that OO’s spend significantly more time on the Internet in general and significantly more time in infertility forums than do AO’s, yet these differences do not predict depression.
The results also revealed that OO’s report receiving less social support from friends and relatives than do AO’s. But because of the correlational nature of the study we are unable to know whether the greater lack of support experienced by OO’s is a cause of their greater depression. While lack of support can contribute to depression, it is equally plausible that depressed people elicit less support than non-depressed individuals.
The differences between OO and AO levels of depression as well as differences in satisfaction and support may be attributable to differences in demographic characteristics of these two groups. Compared to AO’s, OO’s are less affluent, less educated, and include a larger proportion of individuals who have no insurance coverage for infertility and a larger proportion of homemakers. Given the expense of infertility treatment, earning less money and having no insurance coverage can limit treatment options and contribute to a hopeless outlook for resolving infertility which could be manifested in higher levels of depression. Indeed, for the entire sample, income significantly predicted depression. To further test this notion we created and compared depression scores for 4 groups: persons whose income was under $75,000 and whose only outlet for talking about infertility was the Internet (-75OO), income over $75,000 with only Internet outlets (+75OO), income under $75,000 with alternate outlets (-75AO), and income over $75,000 with alternate outlets (+75AO). The analysis revealed the following depression scores: +75AO 8.16, +75OO 11.48, -75AO 12.20, and –75OO 13.33. Post hoc testing indicated that +75AO was significantly less depressed than any of the other 3 groups which were not significantly different from one another. So it appears that both wealth and having alternate outlets are associated with levels of depression.
The results of this survey must be interpreted with caution. Because it is a non-experimental study we cannot infer causality for levels of depression. Further, data were collected from a self-selected sample who had Internet access and chose to completely fill out a survey that required between 30 and 45 minutes to read and answer. We have no way of knowing how generalizable these results are to the population of infertile women in the United States .
Despite this note of caution there are reasons to suspect that the results have reasonable validity. First, the geographical distribution of responses correlates very highly with population size of U.S. states: the more populous the state, the greater number of surveys received. Second, the distribution of infertility diagnoses reported by respondents corresponds roughly with findings reported by the 1997 Assisted Reproductive Technology Surveillance report of the Centers for Disease Control (CDC) and the American Society for Reproductive Medicine. For example , the CDC reports that 26% of women who had fresh non-donor ART cycles in 1997 had a primary diagnosis of a male factor problem. In the current survey, 24% of OO’s and 25% of AO’s reported having a diagnosis of a male factor problem. Similarly, the CDC reports that 2% of the ART cycles were performed on women whose primary diagnosis was uterine factor. In the present study 3% of OO’s and 5% of AO’s reported this diagnosis. Finally, the CDC reports that 15% of the reported cycles were performed on women whose primary diagnosis was endometriosis. In the present survey, 10% of OO’s and 16% of AO’s report that diagnosis.
Our findings reveal that those who have no other outlets are more depressed, report getting less support from others, learn that they get “permission” from Internet buddies to withdraw from real-world interactions and state that they do avoid these interactions. We believe that it is important for mental health professionals to seek ways to encourage patients using Internet infertility forums to avoid withdrawing from real-world interactions. Moreover, patients turning to the Internet as their sole source of support might chose welcoming face-to-face venues if those venues were part of the daily and weekly groups and organizations they encountered.