What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.     

Sources of Uncertainty About Daughters’ Breast Cancer Risk that Emerge During Genetic Counseling Consultations

Uncertainty is central to the experience of genetic decision making and counseling about cancer risk. Women seeking genetic counseling about their breast cancer risk may experience a great deal of uncertainty about issues related to their daughters. We used a theory of Communication and Uncertainty Management to guide analysis of sources of uncertainty about daughters that emerged during 16 video-recorded and transcribed conversations between mothers at risk for a BRCA 1/2 mutation and their genetic healthcare practitioners. An interpretive design and constant comparative method revealed three dominant patterns or themes representing sources of uncertainty mothers have relating to their daughters: disease risk, future cancer screening, and communication of related information to daughters. Both practitioners and mothers discussed these aspects of uncertainty. The findings identify the significant role uncertainty and familial concerns play in mothers’ genetic testing decision making process. To assist genetic practitioners, we highlight daughter-related concerns that mothers are uncertain about and which are vital to their genetic counseling needs.     

College Mothers' Academic Achievement Goals as Related to their Children's Attitudes Toward Learning

The present study considers the relationship between college mothers' academic achievement goals (both learning and performance) and the mothers' attitudes toward their children's schoolwork as well as the relationship between each of these sets of characteristics in mothers and their elementary-school-age children's attitudes about learning. Results indicate that a mother's adoption of learning goals in her college education is positively related to the endorsement of a process/indirect focus with respect to assisting and evaluating her child on academic tasks and is associated with more personal satisfaction with providing homework assistance and greater optimism concerning the benefits of such assistance. Results also suggest that college mothers with more of a learning goal orientation and/or more of a process/indirect focus have children who display a similar concern with learning and a positive attitude about homework. Mothers who adopted more of a person/product focus with respect to their child's schoolwork had children who were less likely to interpret homework and other school tasks as opportunities to learn.     

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Family communication is the primary, initial means of educating the next, at-risk generation about hereditary cancer risk. In this study, in-depth parent narratives provided self-report of motivations, planning, satisfactions and regrets associated with sharing or not sharing maternal BRCA1/2 test results with young children and advice for parents considering disclosure and for genetic counselors. Interviews were conducted with 32 mothers tested for BRCA1/2 with children ages 8–21 years and 24 of their co-parents; interview narratives were analyzed qualitatively. Parents were concerned with both protecting and educating children about hereditary cancer risk. They expressed confidence that parents can constructively convey genetic information to minor children. Telling relieved most parents and satisfied a sense of parental duty. Parents strongly advised child-specific, age-appropriate tailoring of genetic information and emphasized conveying the positive, preventive utility of genetic information to children. Immunizing effects of disclosure were viewed as providing forewarning about and preparation for possible later family cancer diagnoses. Parents choosing not to tell children were advised to consider future disclosure. Narratives about parental sharing of BRCA1/2 test results with minor children support the feasibility of parental discussion of maternal genetic test results to the next at-risk generation. Results suggest development of intervention tools for parents would support decision-making and family communication and potentially reduce parental worry and regret. Recommendations are made for more active involvement by genetic counselors with tested parents around the topic of delivery of genetic information to children.     

Communication of Genetic Risk Information to Daughters in Families with Fragile X Syndrome: The Parent’s Perspective

Parental approaches to communicating information about genetic disorders to their children may be an important determinant in how the children manage stress as well as their adjustment and adaptation to that information. We explored communication patterns through structured interviews with 46 parents of daughters who learned about their genetic risk status as minors. Three different levels of knowledge about fragile X syndrome were explored: 1) informing that it has been diagnosed in the family and is an inherited disorder, 2) informing about the possibility of a daughter being a carrier, and 3) if testing had been done, informing the daughter of her actual carrier status. Additionally, parental perceptions of their daughter’s understanding of the information were explored along with frequency of discussions. We found that communication about genetic risk was initiated by the parents. Five disclosure patterns were identified with variations in style, content, and frequency of communication related to the information that was being disclosed. Aspects of resilient communication were present for all levels of disclosure; however, as the information became more personally relevant for the daughter such as disclosure about the possibility of “being a carrier” for fragile X syndrome and there was uncertainty regarding potential outcomes, the conversations included fewer resilient characteristics. Uncertainty about what and how to present information may negatively affect a parent’s ability to include elements of resilient communication when disclosing genetic risk information.     

“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones’, particularly daughters’, risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members’ risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.     

Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer

During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE^ca questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.     

Maternal education and children's academic achievement during middle childhood

Despite much evidence that links mothers' educational attainment to children's academic outcomes, studies have not established whether increases in mothers' education will improve their children's academic achievement. Using data from the National Longitudinal Survey of Youth on children between the ages of 6 and 12, this study examined whether increases in mothers' educational attainment are associated with changes in children's academic achievement and the quality of their home environments. Results suggest that children of young mothers with low levels of education perform better on tests of academic skills and have higher quality home environments when their mothers complete additional schooling, whereas increased maternal education does not predict improvements in the achievement or home environments of children with older and more highly educated mothers. The estimated effects of additional maternal schooling for children of these younger mothers appear to be more pronounced for children's reading than math skills.     

Regrets and Advice from Mothers who have Disclosed their HIV + Serostatus to their Young Children

Qualitative interviews were conducted with mothers (N = 47) who had disclosed their HIV status to their child. Mothers described their preparation and the process of the disclosure event, and discussed any regrets they had about disclosing or the process of disclosing. They were also asked what advice they had for other HIV-positive mothers who were trying to determine whether to disclose their serostatus to their young children. Overall, the majority of the mothers (68%) did not regret disclosing their HIV status. Regrets fell into five categories: preparation, timing, context, content, and outcomes of the disclosure event. Based on these findings, mothers who have not disclosed their serostatus to their children need assistance with behavioral practice and support in order to prepare for the process. Furthermore, follow-up support for the children may be beneficial.     

PATERNAL SEPARATION ANXIETY:

Employed mothers of young children worry about the effects of daily separation on their children Do fathers have similar anxieties? Because fathers are expected to leave the home and go to work, psychologists have not studied fathers' concerns about daily separation from their babies and pre-school children In this study, we investigated fathers' and mothers' separation anxiety and the relationships between separation anxiety and family and child-care characteristics The sample included 589 married couples from a larger study of families and center-based child care Data were collected through in-home and center visits Fathers and mothers had similar levels of Separation Anxiety However, fathers reported slightly higher Concern for the Child, and mothers reported higher Employment Concerns Fathers' perceptions of their wives' anxieties were higher by half a standard deviation compared with mothers' reports Fathers' and mothers self reported separation anxieties were modestly correlated Paternal separation anxiety was most strongly associated with fathers' perceptions of their wives' separation concerns, not with mothers' reported anxieties, which suggested ego defensiveness and projection     

Effects of a Genetic Counseling Model on Mothers of Children with Down Syndrome: A Brazilian Pilot Study

Down syndrome occurs in approximately 1:600 live births. Genetic counseling is indicated for these families and may be beneficial for adaptation to the challenges that accompany by this diagnosis. Although the basic counseling goals are similar, there are many models of genetic counseling practiced around the world. The aim of this article is to report the results of a pilot study that evaluated the level of satisfaction with a model of service delivery of genetic counseling practiced in Brazil, the knowledge assimilated about Down syndrome and whether this process resulted in a feeling of well-being and psychological support. Thirty mothers of under 6-month-old children with Down syndrome were interviewed after having two sessions of genetic counseling in a public healthcare service within a period of 30 days. A semi-structured questionnaire was developed by the researchers to collect identification, socioeconomic and demographic data and to assess the client’s satisfaction with the model of genetic counseling. Data were collected using both open and closed questions. The reported level of satisfaction was high. The knowledge assimilated about Down syndrome after only two sessions was considered technically vague by raters in 44 % of cases. Most mothers (96.7 %) reported that genetic counseling was beneficial and provided psychological support. The model was considered satisfactory, but further research is needed to identify ways to improve knowledge retention by this population. These results highlight the utility of referring families for genetic counseling when there is a suspicion of a diagnosis of Down syndrome.     

Quality of mother-child interaction and the intergenerational transmission of sexual values: a panel study

The role of mothers as socializing agents was examined in a longitudinal study. It was assumed that mothers can transmit their own values to their children, especially if the quality of their interaction is good. Whether children influence their mothers' values was also examined. The hypotheses were tested using analysis of variance and structural equation modeling, drawing on data from 253 English adolescent-mother pairs. The results provided little support for the hypotheses. There was some evidence that mothers influenced their children's sexual attitudes, but this effect was found for the families characterized by a low quality of parent-child interaction, rather than for the families characterized by a high quality of interaction. No evidence was found for the assumption that children influence their mothers' sexual attitudes and beliefs. Implications of the study for future research are discussed.     

Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Little is known about factors determining which families utilize genetic counseling services. We conducted semistructured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. We also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling. All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. There is no specific program for families of children with DS. Six of them had received genetic counseling and four had not, either because it was not specifically offered to them or because they did not pursue it in the context of misconceptions about its purpose. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt. Better awareness of genetic counseling by referring physicians, and providing counseling at more than one visit, may contribute to a more effective service.     

When the Topic is You: Genetic Counselor Responses to Prenatal Patients’ Requests for Self-Disclosure

A limited amount of research indicates patient requests play a major role in genetic counselors’ self-disclosure decisions and that disclosure and non-disclosure responses to patient requests may differentially affect genetic counseling processes. Studies further suggest patient requests may be more common in prenatal settings, particularly when counselors are pregnant. Empirical evidence is limited however, concerning the nature of patient requests. This study explored genetic counselors’ experiences of prenatal patients’ requests for self-disclosure. Four major research questions were: (1) What types of questions do prenatal patients ask that invite self-disclosure?; (2) Do pregnant genetic counselors have unique experiences with prenatal patient disclosure requests?; (3) How do genetic counselors typically respond to disclosure requests?; and (4) What strategies are effective and ineffective in responding to disclosure requests? One hundred seventy-six genetic counselors completed an online survey and 40 also participated in telephone interviews. Inductive analysis of 21 interviews revealed patient questions vary, although questions about counselor demographics are most common, and patients are more likely to ask pregnant counselors questions about their personal pregnancy decisions. Participants reported greater discomfort with self-disclosure requests during pregnancy, yet also disclosing more frequently during pregnancy. Counselor responses included personal self-disclosure, professional self-disclosure, redirection, and declining to disclose. Factors perceived as influencing disclosure included: topic, patient motivations, timing of request, quality of counseling relationship, patient characteristics, and ethical/legal responsibilities. Disclosure practices changed over time for most counselors. Additional findings, practice implications, and research recommendations are discussed.     

Young Children's Reactions to Mothers’ Disclosure of Maternal HIV+ Serostatus

Little is known about the impact of maternal disclosure of HIV-positive serostatus on young children. The objective of this study was to explore this topic, utilizing in-depth qualitative interviews. Qualitative interviews were conducted with 47 mothers who had disclosed to their young, well child, and with the children. The most prevalent child response was anxiety, primarily focused on the mother's health and fear of her death. A number of children also worried about other people finding out, and seemed aware of the stigma surrounding HIV. For most children anxiety decreased over time, although for a small number it sustained and became maladaptive. The majority of children appeared to adjust well to maternal disclosure. Mothers who are planning to disclose their serostatus to their young children should be encouraged to plan for appropriate psychosocial follow-up following the disclosure, with special focus on the stigma associated with HIV.     

The role of mothers' control in children's mastery orientation: a time frame analysis

Important to understanding the process by which parents' control shapes children's motivation is identifying the time frame in which it does so. To this end, mothers and their 4-year-old children were observed interacting for 15 min while working on a challenging task twice over 6 months. Mothers' control and children's mastery orientation were coded in 1-min intervals at both times. Analyses over the 6 months indicated that mothers' heightened control foreshadowed children's dampened mastery because mothers' control was stable over time. Analyses over the 15-min interactions revealed that the more controlling mothers were one minute, the less mastery oriented children were the next minute, adjusting for their earlier mastery. Moreover, when mothers began these interactions highly controlling, children's mastery was particularly likely to decrease over the 15 min. Taken together, the results suggest the effect of mothers' control on children's mastery is immediate and maintained through mothers' continued controlling practices.     

Mothers with hostile, Type A predisposing child-rearing practices.

The authors examined characteristics of Finnish mothers (N = 924) who use hostile child-rearing practices (i.e., they ignore the child, are punitive and irritable, and perceive the child as a burden), practices that have been shown (R?ikk?nen & Keltikangas-J?rvinen, 1992) to predispose children to Type A behavior. The results of this study indicate that two factors--Type A behavior in the mothers and the mothers' sociodemographic background (low occupational status, low educational level and young age)--increase the probability of the mothers' treating their children in a hostile manner. Also, the mothers of boys in this study reported more hostile child-rearing practices than the mothers of girls did.     

Men’s Decision-Making About Predictive <Emphasis Type="Italic">BRCA1/2</Emphasis> Testing: The Role of Family

Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men’s decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients’ genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members’ experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men’s testing decisions such as familial obligations are examined. The extent to which other family members—partners and adult children—were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.