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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Patient Educ Couns. Author manuscript; available in PMC 2011 January 1.
Published in final edited form as:
PMCID: PMC2787643
NIHMSID: NIHMS122538

Prevalence and correlates of mothers and fathers attending pretest cancer genetic counseling together

Abstract

Objective

To determine the prevalence of fathers’ attendance at pretest cancer genetic counseling sessions with mothers undergoing BRCA1/2 genetic testing for hereditary breast/ovarian cancer (HBOC) risk, and to identify psychosocial and other correlates of fathers’ attendance.

Methods

One hundred twenty-one fathers of minor-age children who were spouses/partners of women (mothers) undergoing such counseling and testing were recruited, completed a behavioral self-report survey, and provided data about their sociodemographic backgrounds, father-child cancer communication histories, parenting relationship quality, and information-seeking and perceived knowledge.

Results

A total of 27.3% of fathers attended pretest cancer genetic counseling with mothers. Compared to fathers who did not attend pretest cancer genetic counseling, those who did had stronger parenting alliances with mothers, were more likely to have sought out information about BRCA1/2 testing, and felt more informed about testing. In an adjusted logistic regression model of session attendance, the strength of the parenting alliance was associated with a 6% increase in the likelihood of attending genetic counseling (Odds Ratio [OR] = 1.06, 95% Confidence Interval [CI] = 1.01, 1.12, p < .05) and greater perceived knowledge about BRCA1/2 testing was associated a four-fold increase in the likelihood of session attendance (OR = 4.03, CI = 1.77, 9.37, p < .001).

Conclusion

One in three fathers attend pretest cancer genetic counseling with mothers undergoing BRCA1/2 testing; those who do have closer parenting relationships and are more informed about BRCA1/2 testing.

Practice implications

When possible, providers should discuss mothers including fathers in cancer genetic counseling sessions as this may affect outcomes of HBOC genetic counseling and testing.

Keywords: Cancer, Breast cancer, Genetic counseling, BRCA1/2 testing, Parents

1. Introduction

Mutations in the two major hereditary breast/ovarian cancer (HBOC) susceptibility genes, BRCA1 and BRCA2 (BRCA1/2), account for nearly 5%–10% of all breast cancer cases and are associated with up to an 85% lifetime risk of cancer [1]. The process of genetic counseling affords individuals opportunities to discuss and anticipate possible genetic test results, the medical and psychosocial implications of those results, the pros and cons of testing for themselves and for their potentially at-risk relatives, and to facilitate cascade testing for at-risk relatives [2,3]. In many ways, this process is a family-centered experience [4,5]. Central for some women are their thoughts and feelings about passing along risk-conferring mutations to their offspring [68], and the ways in which the marital or parenting relationship affects and/or is influenced by HBOC risks [911].

The literature has shown a high rate of disclosure of BRCA1/2 test results to adult relatives [1214]. Communication to minor-age children, however, is lower, with 50% or more of mothers disclosing their BRCA1/2 test results to their minor-age children, regardless of what the results are [15,16]. This raises questions about potential psychosocial impacts of learning such news on minor children’s quality of life and long-term adaptation to familial cancer risk information [17,18].

Though mothers assume a primary responsibility in parenting young children [19], decisions about communicating with children is made in a family context in which a spouse or partner may play a significant role. Psychological research on husbands’/fathers’ roles within a hereditary cancer context suggests the importance of open communication lines between spouses to promote healthy family adaptation [2022]. Relatively little is known about the impact on fathers of being both support persons to cancer genetic testing participants, and fathers of potentially at-risk children [23,24].

Given the potential impact and outcomes of genetic testing for both of the members of a mother-father parenting dyad, providers of genetic services sometimes encourage joint attendance at genetic counseling, though not uniformly so [2527]. Questions remain about how often mothers and fathers attend such counseling together, factors associated with father attendance, if fathers’ attendance makes significant differences in the counseling process and outcome, and in later communication with offspring. Most data on parenting dyads have been collected in the prenatal genetic testing setting, indicating that fathers often attend genetic counseling sessions with mothers, and accompanied mothers may have a greater need for social support [26,28,29].

For women undergoing BRCA1/2 genetic counseling, greater perceived support from a spouse and encouragement during counseling and testing are associated with lower levels of posttest stress [10,11]. However, over 50% of women attend pre- and posttest genetic counseling for BRCA1/2 mutations without the benefit of a support person, and many of these women are also mothers of minor-age children [23,25]. There is a need to more closely examine how often fathers attend genetic counseling sessions for BRCA1/2 with mothers, and to identify sociodemographic, clinical, and psychosocial factors associated with attendance. In our study, these factors were selected based on literature reviewed, as well as health information-seeking models [30] and models of family functioning in a cancer genetic context [31]. We hypothesized that a majority of mothers would be accompanied to counseling by fathers, and that fathers who attended genetic counseling sessions could be distinguishable from those who did not by having closer family relationships and greater access to genetic information.

2. Methods

2.1. Participants

Adult parenting dyads were ascertained as part of a larger study of mothers participating in pretest cancer genetic counseling and testing for BRCA1/2 mutations at three East coast cancer centers. In addition to being able to read/speak English, women had to be age 18 or older, to have a personal and/or family history suggestive of HBOC, and be mothers of one or more children ages 8–21. Co-parents (adult spouses and partners sharing in the upbringing of the child/ren with the mothers) were also eligible to participate in the behavioral aspects of the study; they did not undergo BRCA1/2 genetic testing but could attend genetic counseling as a support person. A total of 121 mothers and their male co-parents (fathers) serve as the focus of this report.

2.2. Procedure

Genetic counselors determined eligibility and obtained informed consent from mothers at the conclusion of pretest counseling session and following women’s stated intention to provide a blood sample for BRCA1/2 mutation analysis: 81% of mothers consented and subsequently completed a telephone survey. Mothers with eligible co-parents were informed that study invitations could be extended to co-parents to yield more complete, dyadic perspectives on the outcomes of interest. The study’s consent rate among co-parents was 60% [32]. Co-parent telephone surveys coincided with those of mothers’ but were conducted independently. All participants were assessed after pretest genetic counseling, but prior to mothers’ receipt of test results. A modest incentive was offered for completing study-related telephone calls; procedures were approved by the institutional review boards at each of the three participating sites.

2.3. Measures

2.3.1. Sociodemographics and medical information

Sociodemographic information was collected from mothers and fathers; medical information about personal and family history of cancer was collected about mothers only. The latter are important because they have been shown to affect testing decisions [33]. Permission was also received to access maternal BRCA1/2 test results.

2.3.2. Family relationships

In prior work [16], we developed/validated a scale assessing the frequency of parent-child communication about cancer, hereditary cancer risks, and children’s cancer worry. Five items were rated on a 4 point Likert scale (1 = Not at all, 4 = Often; range = 5–20) and summed to an overall score (Cronbach’s coefficient α = 0.68); higher scores indicate a more open father-child cancer communication history. Mother-father parenting relationship quality was assessed via a reliable and valid self-report scale, the Parenting Alliance Measure (PAM) [34]. The PAM is a 20-item measure of the strength of the child-rearing alliance between parents. Items are rated on a 5 point Likert scale (1 = Strongly disagree, 5 = Strongly agree; range = 20–100) and summed to yield a total score; higher scores are associated with stronger and more positive parenting alliance. The PAM is reliable and stable over time (Cronbach’s coefficient α = 0.97, test-retest reliability r = 0.80) [35] and measures the same dimensions for mothers and fathers alike [34]. The internal consistency of the father-reported PAM was high (Cronbach’s coefficient α = 0.90).

2.3.3. Information-seeking and perceived knowledge

Guided by health information-seeking models [30], we developed and administered two face-valid items regarding whether or not fathers had sought-out medical information (i.e., from literature, Internet, health care professional sources) about BRCA1/2 testing (Yes/No), and assessed how well-informed they felt about such testing (1 = Not at all, 4 = Extremely). These items served as indicators of fathers’ BRCA1/2-related information-seeking and perceived knowledge, respectively.

2.3.4. Attendance

Based upon prior method [36], fathers’ attendance at mothers’ pretest cancer genetic counseling sessions was initially obtained via self-report, and subsequently verified by mothers’ genetic counselors. In the event of any discrepancies (N=8 cases), the genetic counseling record was used as the data source.

2.3.5. Statistical analyses

Descriptive statistics were used to characterize the study population (Table 1). Factors potentially associated with fathers’ attendance were first analyzed in a bivariate fashion using X2tests and t-tests (Table 2), and then in a multivariate logistic regression model (Table 3). Only those variables with significant relationships (p < .05) with session attendance were included in the model.

Table 1
Characteristics of Participating Fathers and Mothers (N = 121)
Table 2
Characteristics Associated with Participation in the Counseling Session Among Nontested Fathers
Table 3
Logistic Regression Model with Odds Ratios (OR’s) and 95% Confidence Intervals (CI’s) of Counseling Session Attendance Among Nontested Fathers

3. Results

3.1 Participant characteristics

Of the 121 fathers participating in this study, 57 (47.1%) were obtained at Site 1, 35 (28.9%) were obtained at Site 2, and 29 (24.0%) were obtained at Site 3 (see Table 1 for a full description of the sample).

3.2. Genetic counseling session attendance

Among the 121 fathers participating in this study, 33 (27.3%) attended pretest cancer genetic counseling with mothers and 88 (72.7%) did not. Significantly fewer fathers attended than did not attend genetic counseling (see Table 2). Differences in session attendance were not due to site effects (Site 1 vs. Sites 2 + 3), X2 (1) = 1.01, p = .32.

3.3. Differences between session attenders and nonattenders

As shown in Table 2, there were few significant differences between fathers who did and did not attend counseling, except in the areas of parenting relationship quality, information-seeking, and perceived knowledge. Compared to fathers who did not attend pretest cancer genetic counseling, those who did had stronger parenting alliances, were more likely to have sought out information about BRCA1/2 testing, and with greater perceived knowledge about BRCA1/2 testing.

3.4. Adjusted model of session attendance

Logistic regression was used to assess the likelihood of fathers’ attendance at genetic counseling, based on significant predictors identified at the bivariate level (parenting, information, knowledge). The results displayed in Table 3 indicate that strength of the parenting alliance was associated with a 6% increase in the likelihood of attending genetic counseling (Odds Ratio [OR] = 1.06, 95% Confidence Interval [CI] = 1.01, 1.12, p < .05), and that greater perceived knowledge about BRCA1/2 testing was associated with a fourfold increase in the likelihood of session attendance (OR = 4.03, CI = 1.77, 9.37, p < .001).

4. Discussion

The purpose of this study was to determine how often mothers of minor-age children participating in BRCA1/2 genetic counseling and testing jointly attend a pretest session with their spouses/partners (i.e., their children’s fathers), and to identify psychosocial factors distinguishing fathers who attend sessions vs. those who do not. Data indicate 27.3% of mothers and fathers attend pretest counseling together. Mother-father dyads attending sessions together have stronger working alliances as parents, and these fathers also have greater perceived knowledge about BRCA1/2 testing. Whether this latter finding is a cause or consequence of paternal participation in counseling cannot be determined here, but is an area ripe for future exploration.

That nearly one-third of mothers and fathers attend pretest BRCA1/2 genetic counseling sessions together has not been well-documented previously. Moreover, that they function more effectively together as parents vs. those families where mothers attend alone is consistent with the parenting literature on the benefits of stronger parenting alliances on family functioning [3739]. It is also consistent with prior reporting on the role of parenting alliance in the context of genetic counseling [32]. In light of the recommendation for women to attend cancer genetic counseling with a support person [27], additional research on barriers and facilitators of fathers’ session attendance seems warranted.

4.1. Limitations

The study is limited by a lack of representation of racial and ethnic minorities and little socioeconomic diversity. It also did not assess women and their partners who ultimately did not opt for BRCA1/2 testing. Further, 40% of fathers who were potentially eligible to be in the study did not participate and were part of more parentally stressed dyads [32]. It is unknown if (or how many) fathers who were invited to attend sessions by mothers failed to do so. The study did not directly assess fathers’ motivations for session participation or nonparticipation, nor did it examine father’s attendance at posttest counseling (though the literature suggests pretest and posttest support systems are similar [25]). Lastly, the cross-sectional design of the study does not permit causal modeling of fathers’ session attendance.

4.2. Conclusions

Roughly 1 in 3 fathers attend pretest cancer genetic counseling with mothers undergoing BRCA1/2 testing. Those who do have closer parenting relationships and greater perceived knowledge about BRCA1/2 testing. These fathers may, in turn, be better equipped to support mothers about making key decisions later on, including medical decisions and family communication decisions.

With respect to practice implications, providers should recognize fathers as collateral counseling participants who might be beneficial to the counseling process. Helping fathers to become involved in cancer genetic counseling may encourage their ongoing support of mothers. Further understanding of mother-father relationships in the context of cancer genetic counseling could lead to parent-focused interventions and improve HBOC counseling and testing outcomes.

Acknowledgments

The authors would like to thank Marilyn Sampilo, Lara Wilson, Lauren Wine Grella, Clinton Finch, and Scott Kelly for their contributions to this research. We are also grateful to McKinsey Goodenberger for assistance with the literature review, and to the participants who took part in this study.

This research was supported by grants from the National Institutes of Health’s National Human Genome Research Institute (HG002686) and National Cancer Institute (CA091831) to Dr. Tercyak with additional support from the Jess and Mildred Fisher Center for Familial Cancer Research at the Lombardi Comprehensive Cancer Center.

Footnotes

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