Helen Statham

Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer.

In familial breast/ovarian cancer, the information that the proband is able to supply about other family members is of critical importance for genetic counseling. This frequently requires family communication. Forty-six women attending a cancer genetics clinic were interviewed as part of a longitudinal study. Nearly all reported affected maternal, rather than paternal relatives, which may indicate lack of awareness by women with paternal histories. There was also much more communication among female relatives. Mothers, where they were still alive, were key figures in supplying family information. Although the majority of the sample contacted at least one relative regarding counseling, most named a relative with whom they did not feel able to communicate on this subject. Probands balanced the perceived obligation of passing on information with that of not causing alarm. Communication, both obtaining and giving information, was impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings.

Factor Structure, Validity and Reliability of the Cambridge Worry Scale in a Pregnant Population

This article presents the Cambridge Worry Scale (CWS), a content-based measure for assessing worries, and discusses its psychometric properties based on a longitudinal study of 1207 pregnant women. Principal components analysis revealed a four-factor structure of women’s concerns during pregnancy: socio-medical, own health, socio-economic and relational. The measure demonstrated good reliability and validity. Total CWS scores were strongly associated with state and trait anxiety (convergent validity) but also had significant and unique predictive value for mood outcomes (discriminant validity). The CWS discriminated better between women with different reproductive histories than measures of state and trait anxiety. We conclude that the CWS is a reliable and valid tool for assessing the extent and content of worries in specific situations.

Pregnant women's attitudes to abortion and prenatal screening

Recent advances in prenatal screening and diagnosis mean that an increasing number of women may be faced with the possibility of terminating a pregnancy on the grounds of fetal abnormality. Little ...

Counseling families with hereditary breast and ovarian cancer: A psychosocial perspective

Genetic linkage studies have established that a gene with mutations predisposing to breast and ovarian cancer (BRCA1) is located on chromosome 17q. The gene has been cloned and some of its many mutations described (Easton et al., 1994; Ponder, 1994). A second gene BRCA2 has been located (Wooster et al., 1994). The existence of other dominantly inherited predisposing genes has been suggested (Sobol et al., 1994). Family history clinics have been set up to provide counseling for those from families with a history of breast and/or ovarian cancer (e.g., Evans et al., 1994). Numbers seen in such clinics are as yet small but the potential demand is very large. Therefore, there is an urgent need to develop services in view of the likely rapid increase in numbers of women coming forward for genetic counseling. This paper aims to set out the issues which arise in, and are in some cases specific to, hereditary breast and ovarian cancer counseling from a psychosocial perspective and to describe the key elements in a genetic explanation which family members may require in order to make appropriate decisions. It supplements the recommendations for counseling that have been produced in Britain (Evans et al., 1992, 1994), and the USA (Biesecker et al., 1993; King et al., 1993; Lerman and Croyle, 1995; Lynch and Watson, 1992; Ngan and Shepherd, 1994). It is based on observations and pilot interviews for an ongoing study of lay knowledge and communication in families with genetic disorders which has involved interviews with members of families who carry hereditary breast and/or ovarian cancer. Work

The effects of miscarriage and other ‘unsuccessful’ pregnancies on feelings early in a subsequent pregnancy

Abstract Data from pregnant women recruited to a prospective study of the psychological and social effects of screening for fetal abnormality were analysed according to previous reproductive experiences. In this paper we report on the effects of these previous experiences on womens feelings early in this pregnancy. Women who had experienced a previous unsuccessful pregnancy were more anxious, both generally and specifically, about the possibility of something being wrong with the baby and about the possibility of miscarriage. Women with unsuccessful pregnancies and no living children had the highest trait anxiety, when measured early in pregnancy. We show a number of ways in which women who have experienced a previous pregnancy failure differ from women who have not; these differences vary with a number of factors, notably the type of unsuccessful pregnancy, whether or not the woman has living children, the timing of the unsuccessful events, and whether a woman has also had a non-medical termination of p...

Prenatal diagnosis of fetal abnormality: the decision to terminate the pregnancy and the psychological consequences

In the absence of any prenatal screening, some two percent of babies will be born with a structural anomaly; a further 1 in 700–800 will be born with Downs syndrome, with similar numbers having other chromosomal and serious genetic disorders. The prevalence of abnormalities in early pregnancy is higher because abnormal fetuses are more likely to miscarry than normal ones. A small number of women enter pregnancy at increased risk of conceiving a baby with an abnormality. They may have a maternal condition such as diabetes, need medication for conditions such as epilepsy, or have a family history of a genetic disorder ( www3.ncbi.nlm.nih.gov/Omim/searchomim.html ). Most abnormalities, however, occur in healthy, low-risk women.

Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research

Objectives: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder. Design: Semi-structured interviews and analysis/description of main themes. Participants: 78 members of 52 families who had been recruited to a molecular genetic study. Results: People were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They had mostly been recruited to take part by trusted clinicians or their relatives but had little memory of, or concern about signing consent forms. Families appeared to regard the research as a continuation of their, or their relatives’, clinical care. Conclusions: Ethical review should be more flexible in its attitude to consent forms and written information sheets for some sorts of research. For rare genetic disease studies where research has been discussed fully within the clinical setting then the consent obtained at that time could suffice rather than needing extra consent at a later stage. However, clinician-researchers will need to ensure that their duty of care extends for the duration of the research and beyond.

Late termination of pregnancy: law, policy and decision making in four English fetal medicine units:.

Objective  UK abortion law allows terminations for fetal abnormality without gestational limit. This study aimed to understand the decision‐making experiences of fetal medicine professionals working within this legal framework.

Perinatal Postmortems: What Is Important to Parents and How Do They Decide?

BACKGROUND Falling consent rates for postmortems, regardless of age of death, have been widely reported in recent years. The aim of this study was to explore parental attitudes to, and decision-making about, a perinatal postmortem after termination for fetal abnormality, late miscarriage, or stillbirth. METHODS A prospective self-completion questionnaire was given to 35 women and their partners. The participants had experienced second or third trimester pregnancy loss in a single fetal medicine and delivery unit in the United Kingdom and were making decisions about having a postmortem. They were asked to complete a questionnaire about their attitudes to, and expectations of, a perinatal postmortem. RESULTS Thirty-one questionnaires were received from parents of 17 babies (49% of those asked; 16 from mothers, 15 from fathers). Parents of nine babies (53%) said they would agree to a full postmortem, of three babies to a limited postmortem, and of four babies to an external examination only; one couple were undecided. The most important issues for the parents in this study that related to their decisions about a postmortem centered on the need for information, both for future planning and about what had happened. Moderately important issues related to altruism, which is, improving medical knowledge and helping other parents experiencing similar bereavement. Among the lowest scoring issues were potential barriers, such as concerns about cultural or religious acceptability of a postmortem, funeral delays, and what would happen to the babys body. CONCLUSIONS Bereaved parents who participated in this study, where postmortem consent rates were relatively high, thought that their need for knowledge eclipsed assumed barriers when deciding whether or not to have a postmortem for their baby.

Women's knowledge of prenatal screening tests. 1: Relationships with hospital screening policy and demographic factors

Abstract Screening for fetal abnormalities has become a major part of routine antenatal care, but previous research suggests that women are not always well-informed about the tests that they undergo. Building on the knowledge questionnaire developed by Marteau e t al (1988), we explored the knowledge of approximately 1200 pregnant women, booked for care at nine different hospitals, in relation to hospital screening policy and demographic factors. The same questions were asked pre-booking and at 22 weeks. Knowledge increased substantially between these two occasions but results from a control group indicated that the increase in knowledge did not result from our having asked the questions at the time of the first questionnaire. Age, education, parity and hospital policy were all found to be strongly related to womens knowledge scores, although hospital differences were spa& to questions related to alpha-fetoprotein testing. Hospital differences were apparent before the first hospital visit, both for multi...