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Stigma, disclosure, and family functioning among parents of children conceived through donor insemination
Vol. 68, No.1, July 1997
FERTILITY AND STERILITY@ Copyright
Printed on acid-free paper in U. S. A.
1997 American Society for Reproductive Medicine
Published by Elsevier Science Inc.
Stigma, disclosure, and family functioning among parents of children conceived through donor insemination Robert D. Nachtigall, M.D.tt Jeanne M. Tschann, Ph.D.§ Seline Szkupinski Quiroga, B.A.II
Linda Pitcher, M.A.II Gay Becker, Ph.D.II
University of California, San Francisco, California
Objective: To examine the influence of gender, male infertility factor, and other demographic variables on stigma and whether parents tell their children that they were conceived by donor insemination (D!) and to ascertain if stigma and the disclosure decision affect parental bonding with the child or the quality of the interparental relationship. Design: One hundred eighty-four San Francisco Bay Area couples who had become parents by DI were asked to complete a self-administered questionnaire. Setting: A private infertility practice. Patient(s): Eighty-two men and 94 women who completed the questionnaire. Main Outcome Measure: A questionnaire assessing disclosure, stigma, parental bonding, and the quality of the interparental relationship. Result(s): Factors that increased the couple's likelihood of disclosure included younger age, azoospermia, lower stigma scores, and having more than one DI child. Fathers who scored higher on stigma reported less parental warmth and parental fostering of independence. Conclusion(s): Because the decision regarding disclosure of DI treatment was not linked to parental bonding with the child or to the quality of the interparental relationship, we cannot conclude that nondisclosure is harmful to family relationships or is a symptom of family problems. The husband's perceptions of stigma however, may affect the father-child relationship adversely. (Fertil Steril® 1997;68:83-9. © 1997 by American Society for Reproductive Medicine.) Key Words: Donor insemination, secrecy, disclosure, stigma, infertility
Although the practice of donor insemination (D!) of sperm results in the births of as many as 30,000 children a year in the United States (1), in the past most parents either chose to keep their DI treatment strictly to themselves or were counseled to do so by their physicians (2). On the other hand, professionals in the fields of mental health, law, and ethics Received November 19, 1996; revised and accepted March 19, 1997. * Supported by grants from the Academic Senate of the University of California, San Francisco, and from the California-Pacific Medical Center, San Francisco, California. t Reprint requests: Robert D. Nachtigall, M.D., 160 Palo Alto Avenue, San Francisco, California 94114 (FAX: 415·661-8350). :j: Department of Obstetrics, Gynecology, and Reproductive Science. § Departments of Pediatrics and Psychiatry. 1\ Division of Medical Anthropology, Department of Epidemiology and Biostatistics. 0015-0282/97/$17.00 PH S0015-0282(97)00103-9
have suggested that the parents' failure to disclose the DI to the child has negative implications for the well-being of DI offspring and families (3, 4). The recognition that "secrecy" raises difficult social, psychological, and ethical questions while holding considerable practical and emotional appeal for the couple is a major unresolved issue of DI. Despite the large numbers of DI families in the United States, little is known about the factors that influence couples' disclosure decisions and the subsequent effects on the family relationship. A recent review (3) suggests that couples may view the decision not to disclose as one that protects them from negative reactions from society, family, or friends, as well as protects the child from being looked upon as different from others. Husbands may have concerns that the acknowledgment of infertility would cause their virility or masculinity to come under suspicion or that the child's relationship with 83
the husband would be damaged if his or her true genetic identity were known. Both of these concerns are rooted in the experience of stigma, a negative sense of social difference from others that is so outside the socially defined norm that it discredits and devalues the individual (5). In a previous study of 36 infertile couples (6), we found that men who had been identified as having an infertility factor experienced greater stigma than men who had not. As couples with male factor infertility are likely candidates for DI, we considered that the experience of stigma might be related to the disclosure decisions of couples who subsequently conceived children by this technique. Furthermore, we were interested in whether the experience of stigma and the consequences of the disclosure decision influenced the quality of their family functioning. This study was undertaken with four specific aims: [1] to examine the demographics ofDI families and evaluate their willingness to participate in DI research that included the issue of disclosure, [2] to determine if perceptions of stigma influenced the decision of whether to disclose, [3] to examine the influence of gender, male infertility factor, and other demographic variables on stigma and decisions to disclose, and [4] to ascertain if stigma and disclosure are related to the quality of DI family functioning. MATERIALS AND METHODS
All married couples who had delivered at least one child by DI between 1980 and 1990 from the San Francisco practice of one of the authors (R.D.N.) were contacted by mail. The mailing ineluded a short description of this study and a postcard with checkoffboxes accepting or declining the invitation to participate. If one or both members of the couple agreed to participate, they were mailed a questionnaire and a consent form. Couples were instructed to complete the questionnaire individually. Coded numbers were assigned to protect the anonymity of respondents. A number-coded postage-paid envelope was provided to return the completed questionnaire and consent form. The study protocol and consent form was approved by the Institutional Committees on Human Research of the University of California, San Francisco, and the California-Pacific Medical Center, San Francisco. The questionnaire consisted of four parts: [1] demographic information, [2] four psychological scales measuring parenting and marital satisfaction, [3] a stigma scale, and [4J a measure of disclosure about DI to other people and offspring. Demographic information collected included parental age, sex, ethnicity, years married, religion, education, occupation, household income, and number and ages of DI 84
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Disclosure factors in donor insemination
children. We also asked respondents whether they would be willing to be personally interviewed about DI and their disclosure decision in the future. The medical chart was reviewed to confirm the date of the DI children's conception and the number of DI offspring and to classify the husband's infertility factor as azoospermia, oligospermia, or postvasectomy. The four psychological measures were the following: [1] The Dyadic Adjustment Scale (7), which contains 32 Likert-type items measuring four dimensions of marital adjustment: satisfaction, affection, cohesion, and conflict (Cronbach's a coefficients range from 0.73 to 0.94); [2] the Miller Social Intimacy Scale (8), a 17-item scale measuring the level of intimacy currently experienced with spouse (a = 0.88); [3] The Father-Child Activity Scale (9), a 26-item Likerttype scale, reworded slightly to measure the degree of parental involvement with parenting activities (test-retest reliability = 0.82); and [4] The Parental Attitudes Toward Child Rearing Scale (10), which contains 51 Likert-type items and assesses four dimensions of child-rearing: warmth, strictness, aggravation, and parental fostering of independence (a = 0.58 to 0.78). Concerns about stigma were evaluated with a nine-item Likert-type stigma scale adapted from Hyman (11) for this study. It assesses stigma about DI for self, partner, and child with respect to perceived discomfort, superiority, and avoidance by others. For our modified Hyman Stigma Scale, Cronbach's a was 0.92. For most analyses, the total nine-item scale was used. For analyses relating stigma and disclosure, both the score from the total nine-item scale and the scores from the three stigma subscales (self, partner, and child) were used. Attitudes about disclosure were measured by nine items adapted from Rodocker (12) regarding openness of discussion about DI, number of people to whom DI has been disclosed, relationship of each person to the subject, disclosure or plans for disclosure to the child, and degree of concern about protecting the father, the mother, and the child. Five of the items were supplemented by open-ended questions on the same topic. Cronbach's a for the entire nine-item disclosure scale was low (0.43), so two items reflecting important aspects of disclosure were chosen for use: if respondents had discussed having received DI treatment with others before the birth of their child (disclosed or did not disclose to others) and their plans for telling the children about their DI origin (disclosed to child, undecided, and did not disclose to child). Statistical Analyses
T-tests and one-way analysis of variance were used to test hypotheses regarding the relationship Fertility and Sterility"
between stigma and disclosure. Hypotheses regarding the influence of demographic variables on stigma and disclosure were tested using X2 , t-tests, and oneway analysis of variance as appropriate. Hypotheses regarding relationships between stigma and family functioning were tested using multiple linear regression, controlling for demographics. Hypotheses regarding relationships between disclosure and family functioning were tested using t-tests and one-way analysis of variance. One-way analyses of variance were followed by multiple comparison tests (Bonferroni) as appropriate. Ifvalues for all psychological measures were missing, the person was excluded from all analyses. If values for some (up to two) psychological measures were missing, mean substitution was used and the individual was included in all analyses. Persons who were divorced were excluded from analyses for the marital relationship. Couples with children under the age of 2 years were excluded from analyses for parenting because the parenting scale did not apply to children under 2. For all analyses, a P value of <0.05 was considered significant. RESULTS Demographics and Willingness to Participate
Of a total of 184 DI couples successfully contacted, 102 women and 85 men completed and returned a questionnaire packet, yielding a participation rate of 55% for women and 46% for men. Because, however, the questionnaire contained questions that addressed marital satisfaction, divorced respondents were not included in further analysis, yielding a final sample of 94 women and 82 men. The demographics of the final sample of 176 respondents is presented in Table 1. This sample is made up of predominantly white, highly educated, affluent, white-collar professionals, with the male infertility factor fairly evenly distributed between oligospermia (43%), azoospermia (32%), and vasectomy (25%). There was no significant difference between those respondents who declined and those who participated with respect to gender, ethnicity, occupational status, male infertility factor, or number of DI children. Decliners, 44.5 :::':: 6.5 years (mean :::':: SD), were older than participants, 41.6:::':: 6.0 years (P < 0.001), and their first DI child was older (decliners, mean age 8.2 : :': 3.4 years; participants, mean age 5.3 : :': 3.2 years; P < 0.0001). Of the final sample of 176 respondents, 55% (97) indicated that they were willing to be interviewed, 19% (34) were not, and 26% (45) were not sure. There was no difference between the people who were willing to be interviewed and those who were not by Vol. 68, No.1, July 1997
Table 1 Demographic Composition of the Final Sample Variables Gender Men Women Age of total sample (y)t Men Women Duration of marriage (y)t Ethnic Background (%) White Asian-American Latino African-American Native American Education (%) High school College graduate Postbaccalaureate Religion (%) Catholic Protestant Jewish Other None Employed outside the home (%) Men Women Employment Type (%) White collar (7-9 Hollingshead) Blue collar (3-6 Hollingshead) Number of Dr children One Two Three Four Age of oldest child (y)t Male infertility factor (%) Oligospermia Azoospermia Previous vasectomy
Value
82 (47) 94 (53)
39.3 :!: 4.3 44.3 :!: 6.6 11.1 :!: 4.9 90.3 4.6 4.0 0.6 0.6 8.6 45.2 46.8 29.9 21.8 20.1 11.5 16.7
93.8 57.4 75.4 12.5 52.3 35.8 9.1 2.8 5.3 :!: 3.2
43 32 25
* Values in parentheses are percentages. t Values are means z SD.
gender, age, years of marriage, number of DI children, or age of the oldest child. Willingness to be interviewed and male infertility factor were associated for women only (X 2 = 13.7; P < 0.008), with the highest percentage of women willing to be interviewed (42%; n = 18) married to men with vasectomies, whereas the highest percentage of women not willing to be interviewed (60%; n = 10) were married to men who were oligospermic. Willingness to be interviewed was related to both disclosure to others (X 2 = 11.55; P < 0.003) and disclosure to children (X 2 = 16.62; P < 0.002). Among those who had disclosed to others, 69% (53) were willing to be interviewed. Among those who had not disclosed to others, 44% (44) were willing to be interviewed. Of those who had told or planned to tell their children about the DI treatment, 77% (39) were willing to be interviewed. Of those who had not told and were not planning to tell their child about the Nachtigall et al. Disclosure factors in donor insemination
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DI, 44% (41) were willing to be interviewed. Ofthose who were undecided about telling their child, 57% (16) were willing to be interviewed. Stigma and Disclosure Decision
Those who had disclosed to others (D) had lower scores on stigma compared to those who had not disclosed (N). These lower scores included selfstigma (mean D == 4.9, mean N == 6.0; t == -2.81; P < 0.005), stigma about their spouse (mean D == 4.65, mean N == 5.45; t == 2.10; P < 0.037), and stigma about their child (mean D == 4.4, mean N == 5.34; t == -2.49; P < 0.014). Although overall stigma was not related to disclosure to the child, those who had disclosed to the child had lower scores on stigma about their child than those who were undecided and those who had not disclosed (mean D == 4.43, mean undecided == 4.35, mean N == 5.40; F ratio == 3.85; P < 0.02). There was no difference between the groups in self-stigma or spouse-stigma. Effect of Gender, Infertility Factor, and Demographic Variables on Stigma and Disclosure
There was no difference in mean scores of stigma by male infertility factor, ethnicity, employment status, educational level, or age of child. Men and women did not differ on stigma. When asked if they had openly discussed their treatment with others before the birth of their child, 44% answered yes and 56% responded negatively. Of the 81 couples in which both the husband and wife responded to this question, there was disagreement in 12 (15%) of the couples. In 10 of these 12 couples, the wife had decided to disclose to others, whereas in two couples, the husband had made that decision. When asked if they had told or planned to tell their child about their treatment, 54% of the sample responded no, 30% responded yes, and 16% were undecided. Of the 78 couples in which both the husband and wife responded to this question, there was disagreement in 17 (22%). In 9 couples, one partner had decided not to disclose and the other was undecided; in 5 couples, one partner had decided to disclose and the other had not made a decision; and in 3 couples, one partner had decided to disclose and the other had decided not to disclose. Of the 176 respondents, 15 individuals (9%) had disclosed to others but were unsure about whether they were going to disclose to their child. Twentyone (12%) had disclosed to others but were not going to disclose to the child. Thirteen (7%) had not disclosed to others but had disclosed or were planning to disclose to the child. Ten (6%) had not disclosed 86
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to others and were unsure about disclosing to the child. Disclosure to others about the Dr treatment was not associated with gender, occupation, income, ethnicity, or religion. Respondents who did not disclose to others were older than those who disclosed (mean age, 43.3 versus 39.6; t == -4.31; P < 0.0001) and had older children (age of oldest child 5.8 versus 4.7; t == -2.26; P < 0.05). Disclosure to the child was not related to gender, occupation, income, ethnicity, religion, or age of the child. Those who had not disclosed to the child were older than those who had disclosed to the child or those who were undecided (mean age, 43.3 versus 39.3 versus 40.5; F == 8.47; P < 0.003) and were married longer (mean years of marriage, 12.2 versus 9.7 versus 9.7; F == 5.7; P < 0.003). Disclosure to the child was associated with the number of DI children (X 2 == 15.3; P < 0.01). Among couples who had more than one DI child, there was a higher proportion of those who had disclosed to the child (65% of couples with more than one child would disclose to the child as compared with 35% of those with only one child). When those who had disclosed to others and those who had not disclosed were compared by male infertility factor, an association was shown for women only. Women married to azoospermic men were more likely to have disclosed to others, and women married to oligospermic men were more likely to have not disclosed to others (X 2 == 6.8; P < 0.03). When compared by infertility factor, there was no difference between those who disclosed to the child, those who were undecided, and those who had not disclosed to the child. Stigma, Disclosure, and Family Functioning
Linear regression analysis revealed no association between stigma and marital satisfaction or marital intimacy. Stigma was related to the father's parental warmth and parental fostering of independence. Controlling for the age of the oldest child, number of Dr children, and number of years married, men scoring higher on stigma reported less parental warmth ((3 == -0.23; P < 0.022) and fostering of independence ((3 == -0.23; P < 0.021). Neither disclosure to others nor to the child was related to parenting (parental warmth, parental fostering of independence, parental strictness, parental aggravation), involvement with the child, marital satisfaction, or marital intimacy. DISCUSSION
Despite the widespread utilization of artificial insemination with donor sperm for over 30 years, there is little information concerning the well-being of the Fertility and Sterility»
families created through DI. In the past, it has been suggested or assumed that couples would be reluctant to participate in research concerning DI (13, 14), especially with respect to the issue of disclosure. Major factors that contribute to this reluctance include the stigma associated with male infertility (6) and the question of "secrecy," i.e., the unresolved psychological and ethical issues concerning the decision of whether to disclose the DI procedure to others or to the child (3). This is the first study that addresses the relationship of perceived stigma, the disclosure decision, and family functioning in a large number of families created by DI. When 184 couples were contacted 1 to 13 years after having one or more children by DI, we found that at least one partner of 55% of couples participated in an anonymous questionnaire study that included questions concerning disclosure. This participation rate was very similar to the 50% participation in Klock and Maier's 1991 study (15) of 70 couples who had conceived by DI. Gender, ethnicity, occupational status, number ofDI children, and male infertility factor (oligospermia, azoospermia, vasectomy) were not significant factors in choosing whether to participate in this study, but we found that parents of older children were less likely to participate than were parents of younger children. This finding (also reported by Klock and Maier [15]) may represent a reluctance to review a decision that had been in place for many years, either out of satisfaction with the status quo or out of concern that it would revive old, and possibly difficult, issues. The finding could also reflect the possibility that respondents who have older children underwent DI in a less open climate or indicate a cultural shift toward more interest in issues surrounding disclosure in the parents of younger DI children. Although this was a self-administered questionnaire study, we also asked parents if they would be willing to participate in a face-to-face interview in the future. We found that although a majority of respondents reported that they would be willing to be interviewed about DI and their disclosure decision, this willingness was related to both disclosure and type of infertility. Those willing to be interviewed were more likely to have disclosed to others and their children than were those unwilling to be interviewed. Among women, more of those married to men with vasectomies were willing to be interviewed. These findings have implications for future research in that interview studies may be biased toward an overrepresentation of postvasectomy and disclosing respondents. More anonymous research approaches, including anonymous questionnaires such as those used in the current research, or anonyVol. 68, No.1, July 1997
mous telephone interviews, could possibly obtain a more unbiased sample. As similarly reported by Amuzu et al. (16), DI study participants tend to be predominantly white, middle to upper-middle class, with above-average education. In a survey of 989 Australians concerning their attitudes toward DI, Rawson (17) noted a trend of increased approval of DI as a function of educational and occupational status. Because there was little or no medical insurance coverage for DI, a higher economic status may reflect the ability to absorb the cost of treatment. With respect to male infertility factor, 43% of the men were oligospermic, 32% azoospermic, and 25% had had a vasectomy. The rates in our sample are similar to the findings of Amuzu et al. (16) of 35%, 31%, and 21% for the same categories, respectively. Because a recent review of public attitudes toward DI suggested that the approval for DI is lower than for adoption or other reproductive technologies that do not have third-party involvement (18), decisions about disclosure may be motivated by the desire to avoid social stigmatization of oneself, spouse, or child if the couple fears that DI creates uncertainty about the description and quality of their family relationship. Indeed, we found that those who had disclosed to others had lower stigma scores for self, spouse, and child. Parents who opt for disclosure may develop a philosophy about DI that treats DI as a fact of life about which there is nothing to hide, thus reducing any perceived stigma that may be attached to DI. In contrast, parents who do not disclose, thereby treating DI as something that should be kept confidential, private, or secret, may anticipate or perceive heightened stigma as a result ofthe need to keep DI private. Those who had disclosed to the child had lower scores on measures of stigma about their child but no difference in scores on measures of self-stigma or spouse-stigma. This suggests that disclosure to the child may be accompanied by a more positive and less stigmatized view of DI. Another possibility is that disclosing DI parents may have a more positive attitude about DI or nongenetic parenthood in general and/or value psychological parenthood more than biological parenthood. With respect to gender, men and women did not differ on stigma. This supports our previous interview study of 36 infertile couples in which we found that [1] men with an infertility factor were highly stigmatized compared with men without a male factor, [2] women were stigmatized by their infertility regardless of whether it was attributed to a male or female factor, and [3] women and men with an infertility factor did not differ on stigma (6). Because all the men have a male factor in this study, we Nachtigall et al. Disclosure factors in donor insemination
87
might expect that their stigma may not be different than their wives'. We expected that the type of male infertility (postvasectomy, oligospermia, azoospermia) would be reflected in degree of stigma. For example, men who had had a vasectomy might feel less stigma because they previously fathered biologic offspring and thus have been spared the psychic pain of discovering their infertility. We found no differences in stigma, however, for the three types of rnale infertility factor. Similarly, we predicted that the type of male infertility would be reflected in disclosure decisions, with postvasectomy couples more likely to disclose. Couples with azoospermia as the male infertility factor, however, were more likely to have disclosed to others, whereas the wives of oligospermic men were less likely to disclose. It is possible that the diagnosis of azoospermia has a different meaning for couples because it is more likely to have a formal "medical" diagnosis and, therefore, be more straightforward and less threatening than oligospermia, which is most commonly "idiopathic," ambiguous, and unexplained. Because azoospermia is more final and essentially without treatment options, the couple may be faced with the DI option earlier and resolve their infertility without extended attempts at medical intervention, which may be stigmatizing in themselves. Another possibility is that men who had prior knowledge oftheir azoospermia for a long time (adolescent cancer or Klinefelter's syndrome, for example) may have had a longer period of adjustment and acceptance or think that the condition is beyond their control and, therefore, less stigmatizing. Participants in our research reported a disclosure rate of 44% compared with the 60% reported by Klock and Maier (15) and the 50% reported by Amuzu et al. (16). With respect to disclosure to the child, our study found a rate of disclosure of 30% compared with the 14% to 20% reported in other American studies ofthe last decade (15, 16, 19) and the 30% reported in the Canadian study of Berger et al. (20). Because none of these studies involved random sampling, conclusions with respect to disclosure rates must be drawn with caution. Because parents' disclosure decisions may change with time, the age of the children may be a relevant variable. If there have been changes in the social or cultural climate with respect to openness about reproductive options, the year and the geographic area of sampling could influence the disclosure rate. Although Schover et al. (19) reported that a higher percentage of women than men supported disclosure to the child (26% versus 20%), we found no difference with respect to gender. The number of children is apparently a major con88
Nachtigal! et aI. Disclosure factors in donor insemination
sideration in decisions about disclosure. Of the respondents with more than one DI child, there was a significantly higher proportion of respondents who had disclosed to the child than for those with only one child (65% versus 35%). Having more than one DI offspring may reflect a commitment to this procedure, a philosophical shift in terms of reconciling how to deal with it, greater comfort with the Dr issue, a greater sense of obligation to disclose, or a heightened sense of the inevitability of disclosure. We found that disclosure to others was more common among families with younger children compared with those with older children. We also found that older, longer married respondents were less likely to disclose to the child or participate in DI research that included the issue of disclosure. These findings are similar to those indicating that parents of younger children were more likely to participate in this research. Again, these findings may indicate a societal shift toward increased openness or less stigma about DI over time. We found that 12% of participants had told others about their DI treatment but were not going to tell their child. This is similar to the rates of 10% to 11% reported in previous studies (19, 21). It has been noted that couples who have decided not to tell their child still welcome the opportunity to discuss DI with others (22). It is likely also that many respondents may disclose to others before making a final decision of whether to disclose to their child. That the decision to discuss the DI treatment with others without disclosing it to the child may become an issue for DI parents is suggested by the earlier retrospective study by Klock and Maier (15) in which 81 % of the participants who reported telling others but not the child regretted the decision to tell others and would not tell anyone if they had to do it over again. We found no differences between respondents who disclosed to others and those who did not with respect to parental warmth, fostering of independence, strictness, or aggravation, nor were there differences in marital satisfaction, marital intimacy, or involvement with the child. The finding of a relationship between stigma and father's parental warmth and parental fostering of independence suggests, however, that perceptions of stigma may affect the father-child relationship adversely. It is possible that fathers who feel greater overall stigma may psychologically distance themselves from their DI offspring or have concerns about stigma affecting their child that differ in degree from the mothers' concerns. Because the perception of stigma may result in efforts to manage or control the stigma through various social and psychological mechanisms (5), the child's independence could be viewed as a threat to privacy or confidentiality. This in turn could translate into Fertility and Sterility»
parental effort s at stigma control , resulting in practices that curtail the child's au tonomy. The absence of a rel ationship with respect to strictness or aggravation suggests that the impact of stigma may be subtle rather than overt and does not support the concern that these fathers are rejecting their children. Despite concerns about the negative effects of secrecy (3, 4), we did not find that the decision regarding disclosure ofDI treatment was linked to parental bonding with the child or to the quality of the interparental relationship and cannot conclude that it is harmful to family relationship s or is a symptom of family problems. The nuances of a DI couple's disclosure decision-making process are complex and multifaceted and involve an interaction between the psychological states of the parents and the social, cultural, and familial context within which this decision must be negotiated. Even after the birth of their DI offspring, 16% of our study couples remained undecided concerning their disclosure decision and 4% reported opposite disclosure plans. A limitation of the current study is that we are interpreting data from families with pr ead olescen t offspring. Studies with larger samples would also allow for separate examination of familie s with young, school-age, and adolescent children, for whom th e effect of disclosure about DI might have very different meanings. More accurate instruments t hat can better capture the subtleties and multiple aspects of disclosure ne ed to be developed, perhaps based on informa tion deri ved from qualitative method s. Because the effect of the disclosure decision on the well-being of DI famili es remains an unresolved issue in th e practice of DI, we urge that further research on this topic be conducted to explore these and other areas of family functioning. REFERENCES 1. U.S. Congress, Office of Techn ology Assessment. Artificial insemina tion practice in the United St ates. OTA 38-BA-48 Wash in gton, D.C.: U.S . Govern ment Printin g Office, 1988. 2. Curie-Co he n M, Lu ttrell L, Sha piro S. Current pr acti ce of
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artificial ins emination by donor in the United States. N Engl J Med 1979;300:585-90. 3. Nachtigall RD. Secrecy: an unr esolved issue in the prac tice of donor in seminat ion. Am J Obste t Gynecol1993; 168:184653. 4. Daniels KR, Taylor K. Secrecy and openne ss in donor in semination. Politi cs Life Sci 1993;12:155 -64. 5. Goffman , E. Stigma: note s on th e management of spoiled identity. Engl ewood Cliffs (NJ ) Prentice Hall, 1963. 6. Nachtigall RD, Becker G, Wozny M. Effects of gen der- specific diagn osis on men 's and women's response to infertility. Fertil Steril 1992;57 :113- 21. 7. Spanier GB. Mea suring dyad ic adjustment: new sca les for as sessing th e qu ali ty of marriage and similar dyads. J Marr Family 1976;38:15- 28. 8. Miller RS, Lefcour t HM. The assessment of social intim acy. J Pers Assess 1982;46 :514-8. 9. Bigne r JJ. Attitudes t owa rd fat he ri ng and father-child activity. Home Econ Res J 1977;6 :98-106. 10. Easterbrooks MA, Goldberg WA. Toddler development in the family: impact of fath er inv olvement and parenting characte rist ics. Child Dev 1984;55 :740- 52. 11. Hyman M. The stigma of stro ke: its effect on perform ance during a nd after reh abilit ation . Geria trics 1971 ;132-41. 12. Rodocker M. A follow-up st udy of couples who have succes sfully completed donor insemination [dissertation). P rofessional School of Psychology, Sa n Francisco, 1989 . 13. Rea ding AE, Sledme re CM, Cox ON. A survey of patien t a ttitudes towa rd artificial ins emination by donor. J Psychosom Res 1982;26:429-33 . 14. Behrman SJ. Art ificial insemination . Clin Obstet Gyne col 1979;122:245- 53. 15. Klock SC, Maier D. Psychological fact ors related to donor insemination. Fertil Steril 1991 ;56:489-95. 16. Amuzu B, Laxova R, Shapiro SS . Pregn anc y outcome, heal th of childre n, and family adjus tment after donor in semination . Obstet Gynecol 1990; 75:899-905. 17. Rawson G. Human artificial inse mination by donor a nd the Australia n community. Clin Reprod Fertil 1985;3: 1- 19. 18. Klock SC. Psychological aspects of donor in seminati on, Infer til Reprod Clin North Am 1993;4:455 -69. 19. Schover LR, Collin s RL, Richards S. Ps ychological aspects of donor insemination: eva luation and follow-up of recipient couples. Fertil Steril 1992;57:583-90. 20. Berger DM, Eisen A, Shuber J , Doody KF. Psychological patterns in donor insemin ation couples. Can J Psychiatry 1986; 31:818-23. 21. Klock SC, Jacob MC, Maier D. A pros pective study of donor insemination recipient s: secrecy, privacy, and disclosure. Fertil Steril 1994; 62:477 -84. 22. Czyba J C, Che vret M. Psyc hological reactions of cou ples to artificial insemination wit h donor sperm . In t J Fer til 1979; 24:240-5.
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FERTILITY AND STERILITY@ Copyright
Printed on acid-free paper in U. S. A.
1997 American Society for Reproductive Medicine
Published by Elsevier Science Inc.
Stigma, disclosure, and family functioning among parents of children conceived through donor insemination Robert D. Nachtigall, M.D.tt Jeanne M. Tschann, Ph.D.§ Seline Szkupinski Quiroga, B.A.II
Linda Pitcher, M.A.II Gay Becker, Ph.D.II
University of California, San Francisco, California
Objective: To examine the influence of gender, male infertility factor, and other demographic variables on stigma and whether parents tell their children that they were conceived by donor insemination (D!) and to ascertain if stigma and the disclosure decision affect parental bonding with the child or the quality of the interparental relationship. Design: One hundred eighty-four San Francisco Bay Area couples who had become parents by DI were asked to complete a self-administered questionnaire. Setting: A private infertility practice. Patient(s): Eighty-two men and 94 women who completed the questionnaire. Main Outcome Measure: A questionnaire assessing disclosure, stigma, parental bonding, and the quality of the interparental relationship. Result(s): Factors that increased the couple's likelihood of disclosure included younger age, azoospermia, lower stigma scores, and having more than one DI child. Fathers who scored higher on stigma reported less parental warmth and parental fostering of independence. Conclusion(s): Because the decision regarding disclosure of DI treatment was not linked to parental bonding with the child or to the quality of the interparental relationship, we cannot conclude that nondisclosure is harmful to family relationships or is a symptom of family problems. The husband's perceptions of stigma however, may affect the father-child relationship adversely. (Fertil Steril® 1997;68:83-9. © 1997 by American Society for Reproductive Medicine.) Key Words: Donor insemination, secrecy, disclosure, stigma, infertility
Although the practice of donor insemination (D!) of sperm results in the births of as many as 30,000 children a year in the United States (1), in the past most parents either chose to keep their DI treatment strictly to themselves or were counseled to do so by their physicians (2). On the other hand, professionals in the fields of mental health, law, and ethics Received November 19, 1996; revised and accepted March 19, 1997. * Supported by grants from the Academic Senate of the University of California, San Francisco, and from the California-Pacific Medical Center, San Francisco, California. t Reprint requests: Robert D. Nachtigall, M.D., 160 Palo Alto Avenue, San Francisco, California 94114 (FAX: 415·661-8350). :j: Department of Obstetrics, Gynecology, and Reproductive Science. § Departments of Pediatrics and Psychiatry. 1\ Division of Medical Anthropology, Department of Epidemiology and Biostatistics. 0015-0282/97/$17.00 PH S0015-0282(97)00103-9
have suggested that the parents' failure to disclose the DI to the child has negative implications for the well-being of DI offspring and families (3, 4). The recognition that "secrecy" raises difficult social, psychological, and ethical questions while holding considerable practical and emotional appeal for the couple is a major unresolved issue of DI. Despite the large numbers of DI families in the United States, little is known about the factors that influence couples' disclosure decisions and the subsequent effects on the family relationship. A recent review (3) suggests that couples may view the decision not to disclose as one that protects them from negative reactions from society, family, or friends, as well as protects the child from being looked upon as different from others. Husbands may have concerns that the acknowledgment of infertility would cause their virility or masculinity to come under suspicion or that the child's relationship with 83
the husband would be damaged if his or her true genetic identity were known. Both of these concerns are rooted in the experience of stigma, a negative sense of social difference from others that is so outside the socially defined norm that it discredits and devalues the individual (5). In a previous study of 36 infertile couples (6), we found that men who had been identified as having an infertility factor experienced greater stigma than men who had not. As couples with male factor infertility are likely candidates for DI, we considered that the experience of stigma might be related to the disclosure decisions of couples who subsequently conceived children by this technique. Furthermore, we were interested in whether the experience of stigma and the consequences of the disclosure decision influenced the quality of their family functioning. This study was undertaken with four specific aims: [1] to examine the demographics ofDI families and evaluate their willingness to participate in DI research that included the issue of disclosure, [2] to determine if perceptions of stigma influenced the decision of whether to disclose, [3] to examine the influence of gender, male infertility factor, and other demographic variables on stigma and decisions to disclose, and [4] to ascertain if stigma and disclosure are related to the quality of DI family functioning. MATERIALS AND METHODS
All married couples who had delivered at least one child by DI between 1980 and 1990 from the San Francisco practice of one of the authors (R.D.N.) were contacted by mail. The mailing ineluded a short description of this study and a postcard with checkoffboxes accepting or declining the invitation to participate. If one or both members of the couple agreed to participate, they were mailed a questionnaire and a consent form. Couples were instructed to complete the questionnaire individually. Coded numbers were assigned to protect the anonymity of respondents. A number-coded postage-paid envelope was provided to return the completed questionnaire and consent form. The study protocol and consent form was approved by the Institutional Committees on Human Research of the University of California, San Francisco, and the California-Pacific Medical Center, San Francisco. The questionnaire consisted of four parts: [1] demographic information, [2] four psychological scales measuring parenting and marital satisfaction, [3] a stigma scale, and [4J a measure of disclosure about DI to other people and offspring. Demographic information collected included parental age, sex, ethnicity, years married, religion, education, occupation, household income, and number and ages of DI 84
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children. We also asked respondents whether they would be willing to be personally interviewed about DI and their disclosure decision in the future. The medical chart was reviewed to confirm the date of the DI children's conception and the number of DI offspring and to classify the husband's infertility factor as azoospermia, oligospermia, or postvasectomy. The four psychological measures were the following: [1] The Dyadic Adjustment Scale (7), which contains 32 Likert-type items measuring four dimensions of marital adjustment: satisfaction, affection, cohesion, and conflict (Cronbach's a coefficients range from 0.73 to 0.94); [2] the Miller Social Intimacy Scale (8), a 17-item scale measuring the level of intimacy currently experienced with spouse (a = 0.88); [3] The Father-Child Activity Scale (9), a 26-item Likerttype scale, reworded slightly to measure the degree of parental involvement with parenting activities (test-retest reliability = 0.82); and [4] The Parental Attitudes Toward Child Rearing Scale (10), which contains 51 Likert-type items and assesses four dimensions of child-rearing: warmth, strictness, aggravation, and parental fostering of independence (a = 0.58 to 0.78). Concerns about stigma were evaluated with a nine-item Likert-type stigma scale adapted from Hyman (11) for this study. It assesses stigma about DI for self, partner, and child with respect to perceived discomfort, superiority, and avoidance by others. For our modified Hyman Stigma Scale, Cronbach's a was 0.92. For most analyses, the total nine-item scale was used. For analyses relating stigma and disclosure, both the score from the total nine-item scale and the scores from the three stigma subscales (self, partner, and child) were used. Attitudes about disclosure were measured by nine items adapted from Rodocker (12) regarding openness of discussion about DI, number of people to whom DI has been disclosed, relationship of each person to the subject, disclosure or plans for disclosure to the child, and degree of concern about protecting the father, the mother, and the child. Five of the items were supplemented by open-ended questions on the same topic. Cronbach's a for the entire nine-item disclosure scale was low (0.43), so two items reflecting important aspects of disclosure were chosen for use: if respondents had discussed having received DI treatment with others before the birth of their child (disclosed or did not disclose to others) and their plans for telling the children about their DI origin (disclosed to child, undecided, and did not disclose to child). Statistical Analyses
T-tests and one-way analysis of variance were used to test hypotheses regarding the relationship Fertility and Sterility"
between stigma and disclosure. Hypotheses regarding the influence of demographic variables on stigma and disclosure were tested using X2 , t-tests, and oneway analysis of variance as appropriate. Hypotheses regarding relationships between stigma and family functioning were tested using multiple linear regression, controlling for demographics. Hypotheses regarding relationships between disclosure and family functioning were tested using t-tests and one-way analysis of variance. One-way analyses of variance were followed by multiple comparison tests (Bonferroni) as appropriate. Ifvalues for all psychological measures were missing, the person was excluded from all analyses. If values for some (up to two) psychological measures were missing, mean substitution was used and the individual was included in all analyses. Persons who were divorced were excluded from analyses for the marital relationship. Couples with children under the age of 2 years were excluded from analyses for parenting because the parenting scale did not apply to children under 2. For all analyses, a P value of <0.05 was considered significant. RESULTS Demographics and Willingness to Participate
Of a total of 184 DI couples successfully contacted, 102 women and 85 men completed and returned a questionnaire packet, yielding a participation rate of 55% for women and 46% for men. Because, however, the questionnaire contained questions that addressed marital satisfaction, divorced respondents were not included in further analysis, yielding a final sample of 94 women and 82 men. The demographics of the final sample of 176 respondents is presented in Table 1. This sample is made up of predominantly white, highly educated, affluent, white-collar professionals, with the male infertility factor fairly evenly distributed between oligospermia (43%), azoospermia (32%), and vasectomy (25%). There was no significant difference between those respondents who declined and those who participated with respect to gender, ethnicity, occupational status, male infertility factor, or number of DI children. Decliners, 44.5 :::':: 6.5 years (mean :::':: SD), were older than participants, 41.6:::':: 6.0 years (P < 0.001), and their first DI child was older (decliners, mean age 8.2 : :': 3.4 years; participants, mean age 5.3 : :': 3.2 years; P < 0.0001). Of the final sample of 176 respondents, 55% (97) indicated that they were willing to be interviewed, 19% (34) were not, and 26% (45) were not sure. There was no difference between the people who were willing to be interviewed and those who were not by Vol. 68, No.1, July 1997
Table 1 Demographic Composition of the Final Sample Variables Gender Men Women Age of total sample (y)t Men Women Duration of marriage (y)t Ethnic Background (%) White Asian-American Latino African-American Native American Education (%) High school College graduate Postbaccalaureate Religion (%) Catholic Protestant Jewish Other None Employed outside the home (%) Men Women Employment Type (%) White collar (7-9 Hollingshead) Blue collar (3-6 Hollingshead) Number of Dr children One Two Three Four Age of oldest child (y)t Male infertility factor (%) Oligospermia Azoospermia Previous vasectomy
Value
82 (47) 94 (53)
39.3 :!: 4.3 44.3 :!: 6.6 11.1 :!: 4.9 90.3 4.6 4.0 0.6 0.6 8.6 45.2 46.8 29.9 21.8 20.1 11.5 16.7
93.8 57.4 75.4 12.5 52.3 35.8 9.1 2.8 5.3 :!: 3.2
43 32 25
* Values in parentheses are percentages. t Values are means z SD.
gender, age, years of marriage, number of DI children, or age of the oldest child. Willingness to be interviewed and male infertility factor were associated for women only (X 2 = 13.7; P < 0.008), with the highest percentage of women willing to be interviewed (42%; n = 18) married to men with vasectomies, whereas the highest percentage of women not willing to be interviewed (60%; n = 10) were married to men who were oligospermic. Willingness to be interviewed was related to both disclosure to others (X 2 = 11.55; P < 0.003) and disclosure to children (X 2 = 16.62; P < 0.002). Among those who had disclosed to others, 69% (53) were willing to be interviewed. Among those who had not disclosed to others, 44% (44) were willing to be interviewed. Of those who had told or planned to tell their children about the DI treatment, 77% (39) were willing to be interviewed. Of those who had not told and were not planning to tell their child about the Nachtigall et al. Disclosure factors in donor insemination
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DI, 44% (41) were willing to be interviewed. Ofthose who were undecided about telling their child, 57% (16) were willing to be interviewed. Stigma and Disclosure Decision
Those who had disclosed to others (D) had lower scores on stigma compared to those who had not disclosed (N). These lower scores included selfstigma (mean D == 4.9, mean N == 6.0; t == -2.81; P < 0.005), stigma about their spouse (mean D == 4.65, mean N == 5.45; t == 2.10; P < 0.037), and stigma about their child (mean D == 4.4, mean N == 5.34; t == -2.49; P < 0.014). Although overall stigma was not related to disclosure to the child, those who had disclosed to the child had lower scores on stigma about their child than those who were undecided and those who had not disclosed (mean D == 4.43, mean undecided == 4.35, mean N == 5.40; F ratio == 3.85; P < 0.02). There was no difference between the groups in self-stigma or spouse-stigma. Effect of Gender, Infertility Factor, and Demographic Variables on Stigma and Disclosure
There was no difference in mean scores of stigma by male infertility factor, ethnicity, employment status, educational level, or age of child. Men and women did not differ on stigma. When asked if they had openly discussed their treatment with others before the birth of their child, 44% answered yes and 56% responded negatively. Of the 81 couples in which both the husband and wife responded to this question, there was disagreement in 12 (15%) of the couples. In 10 of these 12 couples, the wife had decided to disclose to others, whereas in two couples, the husband had made that decision. When asked if they had told or planned to tell their child about their treatment, 54% of the sample responded no, 30% responded yes, and 16% were undecided. Of the 78 couples in which both the husband and wife responded to this question, there was disagreement in 17 (22%). In 9 couples, one partner had decided not to disclose and the other was undecided; in 5 couples, one partner had decided to disclose and the other had not made a decision; and in 3 couples, one partner had decided to disclose and the other had decided not to disclose. Of the 176 respondents, 15 individuals (9%) had disclosed to others but were unsure about whether they were going to disclose to their child. Twentyone (12%) had disclosed to others but were not going to disclose to the child. Thirteen (7%) had not disclosed to others but had disclosed or were planning to disclose to the child. Ten (6%) had not disclosed 86
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to others and were unsure about disclosing to the child. Disclosure to others about the Dr treatment was not associated with gender, occupation, income, ethnicity, or religion. Respondents who did not disclose to others were older than those who disclosed (mean age, 43.3 versus 39.6; t == -4.31; P < 0.0001) and had older children (age of oldest child 5.8 versus 4.7; t == -2.26; P < 0.05). Disclosure to the child was not related to gender, occupation, income, ethnicity, religion, or age of the child. Those who had not disclosed to the child were older than those who had disclosed to the child or those who were undecided (mean age, 43.3 versus 39.3 versus 40.5; F == 8.47; P < 0.003) and were married longer (mean years of marriage, 12.2 versus 9.7 versus 9.7; F == 5.7; P < 0.003). Disclosure to the child was associated with the number of DI children (X 2 == 15.3; P < 0.01). Among couples who had more than one DI child, there was a higher proportion of those who had disclosed to the child (65% of couples with more than one child would disclose to the child as compared with 35% of those with only one child). When those who had disclosed to others and those who had not disclosed were compared by male infertility factor, an association was shown for women only. Women married to azoospermic men were more likely to have disclosed to others, and women married to oligospermic men were more likely to have not disclosed to others (X 2 == 6.8; P < 0.03). When compared by infertility factor, there was no difference between those who disclosed to the child, those who were undecided, and those who had not disclosed to the child. Stigma, Disclosure, and Family Functioning
Linear regression analysis revealed no association between stigma and marital satisfaction or marital intimacy. Stigma was related to the father's parental warmth and parental fostering of independence. Controlling for the age of the oldest child, number of Dr children, and number of years married, men scoring higher on stigma reported less parental warmth ((3 == -0.23; P < 0.022) and fostering of independence ((3 == -0.23; P < 0.021). Neither disclosure to others nor to the child was related to parenting (parental warmth, parental fostering of independence, parental strictness, parental aggravation), involvement with the child, marital satisfaction, or marital intimacy. DISCUSSION
Despite the widespread utilization of artificial insemination with donor sperm for over 30 years, there is little information concerning the well-being of the Fertility and Sterility»
families created through DI. In the past, it has been suggested or assumed that couples would be reluctant to participate in research concerning DI (13, 14), especially with respect to the issue of disclosure. Major factors that contribute to this reluctance include the stigma associated with male infertility (6) and the question of "secrecy," i.e., the unresolved psychological and ethical issues concerning the decision of whether to disclose the DI procedure to others or to the child (3). This is the first study that addresses the relationship of perceived stigma, the disclosure decision, and family functioning in a large number of families created by DI. When 184 couples were contacted 1 to 13 years after having one or more children by DI, we found that at least one partner of 55% of couples participated in an anonymous questionnaire study that included questions concerning disclosure. This participation rate was very similar to the 50% participation in Klock and Maier's 1991 study (15) of 70 couples who had conceived by DI. Gender, ethnicity, occupational status, number ofDI children, and male infertility factor (oligospermia, azoospermia, vasectomy) were not significant factors in choosing whether to participate in this study, but we found that parents of older children were less likely to participate than were parents of younger children. This finding (also reported by Klock and Maier [15]) may represent a reluctance to review a decision that had been in place for many years, either out of satisfaction with the status quo or out of concern that it would revive old, and possibly difficult, issues. The finding could also reflect the possibility that respondents who have older children underwent DI in a less open climate or indicate a cultural shift toward more interest in issues surrounding disclosure in the parents of younger DI children. Although this was a self-administered questionnaire study, we also asked parents if they would be willing to participate in a face-to-face interview in the future. We found that although a majority of respondents reported that they would be willing to be interviewed about DI and their disclosure decision, this willingness was related to both disclosure and type of infertility. Those willing to be interviewed were more likely to have disclosed to others and their children than were those unwilling to be interviewed. Among women, more of those married to men with vasectomies were willing to be interviewed. These findings have implications for future research in that interview studies may be biased toward an overrepresentation of postvasectomy and disclosing respondents. More anonymous research approaches, including anonymous questionnaires such as those used in the current research, or anonyVol. 68, No.1, July 1997
mous telephone interviews, could possibly obtain a more unbiased sample. As similarly reported by Amuzu et al. (16), DI study participants tend to be predominantly white, middle to upper-middle class, with above-average education. In a survey of 989 Australians concerning their attitudes toward DI, Rawson (17) noted a trend of increased approval of DI as a function of educational and occupational status. Because there was little or no medical insurance coverage for DI, a higher economic status may reflect the ability to absorb the cost of treatment. With respect to male infertility factor, 43% of the men were oligospermic, 32% azoospermic, and 25% had had a vasectomy. The rates in our sample are similar to the findings of Amuzu et al. (16) of 35%, 31%, and 21% for the same categories, respectively. Because a recent review of public attitudes toward DI suggested that the approval for DI is lower than for adoption or other reproductive technologies that do not have third-party involvement (18), decisions about disclosure may be motivated by the desire to avoid social stigmatization of oneself, spouse, or child if the couple fears that DI creates uncertainty about the description and quality of their family relationship. Indeed, we found that those who had disclosed to others had lower stigma scores for self, spouse, and child. Parents who opt for disclosure may develop a philosophy about DI that treats DI as a fact of life about which there is nothing to hide, thus reducing any perceived stigma that may be attached to DI. In contrast, parents who do not disclose, thereby treating DI as something that should be kept confidential, private, or secret, may anticipate or perceive heightened stigma as a result ofthe need to keep DI private. Those who had disclosed to the child had lower scores on measures of stigma about their child but no difference in scores on measures of self-stigma or spouse-stigma. This suggests that disclosure to the child may be accompanied by a more positive and less stigmatized view of DI. Another possibility is that disclosing DI parents may have a more positive attitude about DI or nongenetic parenthood in general and/or value psychological parenthood more than biological parenthood. With respect to gender, men and women did not differ on stigma. This supports our previous interview study of 36 infertile couples in which we found that [1] men with an infertility factor were highly stigmatized compared with men without a male factor, [2] women were stigmatized by their infertility regardless of whether it was attributed to a male or female factor, and [3] women and men with an infertility factor did not differ on stigma (6). Because all the men have a male factor in this study, we Nachtigall et al. Disclosure factors in donor insemination
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might expect that their stigma may not be different than their wives'. We expected that the type of male infertility (postvasectomy, oligospermia, azoospermia) would be reflected in degree of stigma. For example, men who had had a vasectomy might feel less stigma because they previously fathered biologic offspring and thus have been spared the psychic pain of discovering their infertility. We found no differences in stigma, however, for the three types of rnale infertility factor. Similarly, we predicted that the type of male infertility would be reflected in disclosure decisions, with postvasectomy couples more likely to disclose. Couples with azoospermia as the male infertility factor, however, were more likely to have disclosed to others, whereas the wives of oligospermic men were less likely to disclose. It is possible that the diagnosis of azoospermia has a different meaning for couples because it is more likely to have a formal "medical" diagnosis and, therefore, be more straightforward and less threatening than oligospermia, which is most commonly "idiopathic," ambiguous, and unexplained. Because azoospermia is more final and essentially without treatment options, the couple may be faced with the DI option earlier and resolve their infertility without extended attempts at medical intervention, which may be stigmatizing in themselves. Another possibility is that men who had prior knowledge oftheir azoospermia for a long time (adolescent cancer or Klinefelter's syndrome, for example) may have had a longer period of adjustment and acceptance or think that the condition is beyond their control and, therefore, less stigmatizing. Participants in our research reported a disclosure rate of 44% compared with the 60% reported by Klock and Maier (15) and the 50% reported by Amuzu et al. (16). With respect to disclosure to the child, our study found a rate of disclosure of 30% compared with the 14% to 20% reported in other American studies ofthe last decade (15, 16, 19) and the 30% reported in the Canadian study of Berger et al. (20). Because none of these studies involved random sampling, conclusions with respect to disclosure rates must be drawn with caution. Because parents' disclosure decisions may change with time, the age of the children may be a relevant variable. If there have been changes in the social or cultural climate with respect to openness about reproductive options, the year and the geographic area of sampling could influence the disclosure rate. Although Schover et al. (19) reported that a higher percentage of women than men supported disclosure to the child (26% versus 20%), we found no difference with respect to gender. The number of children is apparently a major con88
Nachtigal! et aI. Disclosure factors in donor insemination
sideration in decisions about disclosure. Of the respondents with more than one DI child, there was a significantly higher proportion of respondents who had disclosed to the child than for those with only one child (65% versus 35%). Having more than one DI offspring may reflect a commitment to this procedure, a philosophical shift in terms of reconciling how to deal with it, greater comfort with the Dr issue, a greater sense of obligation to disclose, or a heightened sense of the inevitability of disclosure. We found that disclosure to others was more common among families with younger children compared with those with older children. We also found that older, longer married respondents were less likely to disclose to the child or participate in DI research that included the issue of disclosure. These findings are similar to those indicating that parents of younger children were more likely to participate in this research. Again, these findings may indicate a societal shift toward increased openness or less stigma about DI over time. We found that 12% of participants had told others about their DI treatment but were not going to tell their child. This is similar to the rates of 10% to 11% reported in previous studies (19, 21). It has been noted that couples who have decided not to tell their child still welcome the opportunity to discuss DI with others (22). It is likely also that many respondents may disclose to others before making a final decision of whether to disclose to their child. That the decision to discuss the DI treatment with others without disclosing it to the child may become an issue for DI parents is suggested by the earlier retrospective study by Klock and Maier (15) in which 81 % of the participants who reported telling others but not the child regretted the decision to tell others and would not tell anyone if they had to do it over again. We found no differences between respondents who disclosed to others and those who did not with respect to parental warmth, fostering of independence, strictness, or aggravation, nor were there differences in marital satisfaction, marital intimacy, or involvement with the child. The finding of a relationship between stigma and father's parental warmth and parental fostering of independence suggests, however, that perceptions of stigma may affect the father-child relationship adversely. It is possible that fathers who feel greater overall stigma may psychologically distance themselves from their DI offspring or have concerns about stigma affecting their child that differ in degree from the mothers' concerns. Because the perception of stigma may result in efforts to manage or control the stigma through various social and psychological mechanisms (5), the child's independence could be viewed as a threat to privacy or confidentiality. This in turn could translate into Fertility and Sterility»
parental effort s at stigma control , resulting in practices that curtail the child's au tonomy. The absence of a rel ationship with respect to strictness or aggravation suggests that the impact of stigma may be subtle rather than overt and does not support the concern that these fathers are rejecting their children. Despite concerns about the negative effects of secrecy (3, 4), we did not find that the decision regarding disclosure ofDI treatment was linked to parental bonding with the child or to the quality of the interparental relationship and cannot conclude that it is harmful to family relationship s or is a symptom of family problems. The nuances of a DI couple's disclosure decision-making process are complex and multifaceted and involve an interaction between the psychological states of the parents and the social, cultural, and familial context within which this decision must be negotiated. Even after the birth of their DI offspring, 16% of our study couples remained undecided concerning their disclosure decision and 4% reported opposite disclosure plans. A limitation of the current study is that we are interpreting data from families with pr ead olescen t offspring. Studies with larger samples would also allow for separate examination of familie s with young, school-age, and adolescent children, for whom th e effect of disclosure about DI might have very different meanings. More accurate instruments t hat can better capture the subtleties and multiple aspects of disclosure ne ed to be developed, perhaps based on informa tion deri ved from qualitative method s. Because the effect of the disclosure decision on the well-being of DI famili es remains an unresolved issue in th e practice of DI, we urge that further research on this topic be conducted to explore these and other areas of family functioning. REFERENCES 1. U.S. Congress, Office of Techn ology Assessment. Artificial insemina tion practice in the United St ates. OTA 38-BA-48 Wash in gton, D.C.: U.S . Govern ment Printin g Office, 1988. 2. Curie-Co he n M, Lu ttrell L, Sha piro S. Current pr acti ce of
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artificial ins emination by donor in the United States. N Engl J Med 1979;300:585-90. 3. Nachtigall RD. Secrecy: an unr esolved issue in the prac tice of donor in seminat ion. Am J Obste t Gynecol1993; 168:184653. 4. Daniels KR, Taylor K. Secrecy and openne ss in donor in semination. Politi cs Life Sci 1993;12:155 -64. 5. Goffman , E. Stigma: note s on th e management of spoiled identity. Engl ewood Cliffs (NJ ) Prentice Hall, 1963. 6. Nachtigall RD, Becker G, Wozny M. Effects of gen der- specific diagn osis on men 's and women's response to infertility. Fertil Steril 1992;57 :113- 21. 7. Spanier GB. Mea suring dyad ic adjustment: new sca les for as sessing th e qu ali ty of marriage and similar dyads. J Marr Family 1976;38:15- 28. 8. Miller RS, Lefcour t HM. The assessment of social intim acy. J Pers Assess 1982;46 :514-8. 9. Bigne r JJ. Attitudes t owa rd fat he ri ng and father-child activity. Home Econ Res J 1977;6 :98-106. 10. Easterbrooks MA, Goldberg WA. Toddler development in the family: impact of fath er inv olvement and parenting characte rist ics. Child Dev 1984;55 :740- 52. 11. Hyman M. The stigma of stro ke: its effect on perform ance during a nd after reh abilit ation . Geria trics 1971 ;132-41. 12. Rodocker M. A follow-up st udy of couples who have succes sfully completed donor insemination [dissertation). P rofessional School of Psychology, Sa n Francisco, 1989 . 13. Rea ding AE, Sledme re CM, Cox ON. A survey of patien t a ttitudes towa rd artificial ins emination by donor. J Psychosom Res 1982;26:429-33 . 14. Behrman SJ. Art ificial insemination . Clin Obstet Gyne col 1979;122:245- 53. 15. Klock SC, Maier D. Psychological fact ors related to donor insemination. Fertil Steril 1991 ;56:489-95. 16. Amuzu B, Laxova R, Shapiro SS . Pregn anc y outcome, heal th of childre n, and family adjus tment after donor in semination . Obstet Gynecol 1990; 75:899-905. 17. Rawson G. Human artificial inse mination by donor a nd the Australia n community. Clin Reprod Fertil 1985;3: 1- 19. 18. Klock SC. Psychological aspects of donor in seminati on, Infer til Reprod Clin North Am 1993;4:455 -69. 19. Schover LR, Collin s RL, Richards S. Ps ychological aspects of donor insemination: eva luation and follow-up of recipient couples. Fertil Steril 1992;57:583-90. 20. Berger DM, Eisen A, Shuber J , Doody KF. Psychological patterns in donor insemin ation couples. Can J Psychiatry 1986; 31:818-23. 21. Klock SC, Jacob MC, Maier D. A pros pective study of donor insemination recipient s: secrecy, privacy, and disclosure. Fertil Steril 1994; 62:477 -84. 22. Czyba J C, Che vret M. Psyc hological reactions of cou ples to artificial insemination wit h donor sperm . In t J Fer til 1979; 24:240-5.
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