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 baby's 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.

Attitudes to perinatal postmortem: parental views about research participation.

OBJECTIVE: To study parental attitudes to participating in questionnaire research about perinatal postmortem immediately after late miscarriage, stillbirth and termination for fetal abnormality. DESIGN: Prospective self-completion questionnaire. SETTING: UK fetal medicine and delivery unit. PATIENTS: 35 women and their partners after second or third trimester pregnancy loss, making decisions about having a postmortem. METHODS: Participants were asked to complete a questionnaire about postmortem decision-making which included questions about their attitudes to taking part in research. Prior to giving full approval for the study, the Research Ethics Committee (REC) requested feedback after 10 questionnaires had been returned. RESULTS: Responses from the first 10 participants were positive about the research and the REC allowed the study to continue. 31 questionnaires were received from parents of 17 babies (49% of those asked; 16 from mothers, 15 from fathers). Of the 22 participants who answered a question about the impact of participating in this research, 73% stated that completing the questionnaire had helped them feel better about the decision whether or not to consent to postmortem and none reported any adverse effect of completing the questionnaire. Additional comments made by 19 participants supported this finding. CONCLUSION: Research into this sensitive area of perinatal medicine where there is a poor outcome is possible and is indeed well received by many parents. RECs should not automatically take a negative stance towards studies of this type.

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 1,207 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.

Are there "unnecessary" cesarean sections? Perceptions of women and obstetricians about cesarean sections for nonclinical indications.

BACKGROUND: The belief that many women demand cesarean sections in the absence of clinical indications appears to be pervasive. The aim of this study was to examine whether, and in what context, maternal requests for cesarean section are made. METHODS: Quantitative and qualitative methods were used. The overall study comprised 4 substudies: 23 multiparous and 41 primiparous pregnant women were asked to complete diaries recording events related to birth planning and expectations; 44 women who had considered, or been asked to consider, cesarean section during pregnancy were interviewed postnatally; 24 consultants and registrars in 3 district hospitals and 1 city hospital were interviewed; 5 consultants with known strong views about cesarean section were also interviewed; and 785 consultants from the United Kingdom and Eire completed postal questionnaires. RESULTS: No woman requested cesarean section in the absence of, what she considered, clinical or psychological indications. Fear for themselves or their baby appeared to be major factors behind women's requests for cesarean section, coupled with the belief that cesarean section was safest for the baby. Most obstetricians reported few requests for cesarean section, but nevertheless, cited maternal request as the most important factor affecting the national rising cesarean section rate. Several obstetricians discussed the significance of women's fears and the importance of taking the time to talk to women about these fears. CONCLUSIONS: Existing evidence for large numbers of women requesting cesarean sections in the absence of clinical indications is weak. This study supports the thesis that these women comprise a small minority. Psychological issues and maternal perceptions of risk appear to be significant factors in many maternal requests. Despite this finding, maternal request is perceived by obstetricians to be a major factor in driving the cesarean section rate upward.

Elective cesarean section and decision making: a critical review of the literature.

BACKGROUND: The cesarean section rate continues to rise in many countries with routine access to medical services, yet this increase is not associated with improvement in perinatal mortality or morbidity. A large number of commentaries in the medical literature and media suggest that consumer demand contributes significantly to the continued rise of births by cesarean section internationally. The objective of this article was to critically review the research literature concerning women's preference or request for elective cesarean section published since that critiqued by Gamble and Creedy in 2000. METHODS: A search of key databases using a range of search terms produced over 200 articles, of which 80 were potentially relevant. Of these, 38 were research-based articles and 40 were opinion-based articles. A total of 17 articles fitted the criteria for review. A range of methodologies was used, with varying quality, making meta-analysis of findings inappropriate, and simple summaries of results difficult to produce. RESULTS: The range and quality of studies had increased since 2001, reflecting continuing concern. Women's preference for cesarean section varied from 0.3 to 14 percent; however, only 3 studies looked directly at this preference in the absence of clinical indications. Women's preference for a cesarean section related to psychological factors, perceptions of safety, or in some countries, was influenced by cultural or social factors. CONCLUSIONS: Research between 2000 and 2005 shows evidence of very small numbers of women requesting a cesarean section. A range of personal and societal reasons, including fear of birth and perceived inequality and inadequacy of care, underpinned these requests.

Communication of prenatal screening and diagnosis results to primary-care health professionals.

OBJECTIVE: To describe how prenatal screening and diagnostic test results are communicated to primary care health professionals. DESIGN: Postal questionnaire. SETTING: Primary care practices across London, East Anglia, the Southeast and Southwest of England. PARTICIPANTS: 714 community-based health professionals (GPs, midwives and health visitors) identified by 247 women (participants in a study of experiences after a positive prenatal diagnosis) as members of their primary care team. MAIN OUTCOME MEASURES: Description of how information about prenatal screening and diagnostic test results is communicated to health professionals working in the primary care team. Participants' views about the timeliness and sufficiency of the information they are given. RESULTS: 131 GPs, 143 midwives and 151 health visitors returned questionnaires, an overall response rate of 60.4%. Sixteen percent of primary care professionals reported that they were not usually informed of high-risk results after serum screening for Down's syndrome. Twenty eight percent were either not usually told about the possibility of abnormalities detected on ultrasound or only heard of such abnormalities from the woman herself. Even when informed, 28% of midwives and GPs did not know what action they were expected to take. Information about confirmed abnormalities is not always communicated to primary care. Only 29% were told soon enough about diagnosed abnormalities and only 17% of health professionals reported that the information they were given was always sufficient to allow them to discuss issues with their patients. The presence of specialist screening coordinators was perceived to be helpful by 76% of health professionals. Improvements in how they were told about abnormalities were suggested and these included the need for systems and protocols that ensured that quality information was communicated quickly. CONCLUSIONS: The frequent absence of means of effective communication between primary and secondary care about diagnosed abnormalities, and health professionals' uncertainties about their role has implications for the quality of care given to women who receive positive results after prenatal screening or diagnosis. There is a need for standards to be established concerning the communication of information to the health professionals responsible for the community-based care of pregnant women after a positive test result.