Janet Hirst

Decisions about testing and termination of pregnancy for different fetal conditions: a qualitative study of European White and Pakistani mothers of affected children.

The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for their responses. There were more similarities than differences between the Pakistani and European white women. The most important factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a child with the genetic condition, in particular, whether the child would be “suffering.” This was described as either physical suffering, as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings highlight the need for detailed information about the potential quality of life for the child and the child’s family to enable parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential “suffering” and the extent to which the child could lead a “normal” life. The findings also challenge stereotypes about cultural differences in attitudes about termination of pregnancy.

Antenatal home blood pressure monitoring: a pilot randomised controlled trial

Objective To measure recruitment to, compliance with, and the acceptability of a trial designed to test whether a reduced schedule of antenatal visits combined with training in self‐measurement of blood pressure at home may improve hypertension screening and save money. To test the specific hypothesis that even after taking into account extra unscheduled visits, the reduced schedule with ambulatory monitoring reduces total visits.

Explaining variation in Down's syndrome screening uptake: Comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews

BackgroundThe offer of prenatal Down’s syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation in individual values alone.The aim of this study was to compare Down’s syndrome screening policies and programmes in the Netherlands, where uptake is relatively low (<30%) with England and Denmark where uptake is higher (74 and > 90% respectively), in an attempt to explain the observed variation in national uptake rates.MethodsWe used a mixed methods approach with an embedded design: a) documentary analysis and b) expert stakeholder analysis. National central statistical offices and legal documents were studied first to gain insight in demographic characteristics, cultural background, organization and structure of healthcare followed by documentary analysis of primary and secondary sources on relevant documents on DSS policies and programme. To enhance interpretation of these findings we performed in-depth interviews with relevant expert stakeholders.ResultsThere were many similarities in the demographics, healthcare systems, government abortion legislation and Down’s syndrome screening policy across the studied countries. However, the additional cost for Down’s syndrome screening over and above standard antenatal care in the Netherlands and an emphasis on the ‘right not to know’ about screening in this country were identified as potential explanations for the ‘low’ uptake rates of Down’s syndrome screening in the Netherlands. The social context and positive framing of the offer at the service delivery level may play a role in the relatively high uptake rates in Denmark.ConclusionsThis paper makes an important contribution to understanding how macro-level demographic, social and healthcare delivery factors may have an impact on national uptake rates for Down’s syndrome screening. It has suggested a number of policy level and system characteristics that may go some way to explaining the relatively low uptake rates of Down’s syndrome screening in the Netherlands when compared to England and Denmark.

Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women in Saudi Arabia and the UK

The aim of this research was to compare attitudes between women from different cultural and/or religious backgrounds toward prenatal diagnosis (PND) and termination of pregnancy (TOP) for 30 different conditions.

Navigating the Troubled Waters of Prenatal Testing Decisions

‘Informed decision making’ is considered to be a basic prerequisite in prenatal testing, but there are many difficulties with this concept, not least in defining what information people need (Green et al., 2004). Parents need information about the pros and cons of accepting prenatal screening, as well as the specific processes involved. Additionally, if parents-to-be are to make decisions that are consistent with their own value systems, it is likely that they need some information about the target condition so that they can form a judgement about what it would be like to live with an affected child. This chapter brings together two studies within the Innovative Health Technologies Programme that focused on the social context and implications of prenatal genetic screening and testing technologies. One examined the social and organisational implications of innovative and established modes of prenatal screening as defined, perceived and communicated by health professionals and pregnant women. The other explored women’s views about a range of conditions for which prenatal genetic screening is likely to be possible in the future. This chapter draws on the thoughts and feelings of women from both studies concerning the possibility of having a baby with one of the conditions for which there are or will be screening tests.

Review: Maternal postadoption depression: theory refinement through qualitative content analysis

Depression is one of the greatest challenges amongst mental health problems because of its prevalence, potential severity and over-reliance on informal screening within the community, that is, referral from family or friends, self-referral, or routine screening by health professionals. Implications of maternal depression, be its origins postadoption or postnatal, have potentially serious consequences for a woman’s mental and physical health as well as risking interactions and relationships with those closest to her, such as the adoptive infant, existing children and partners. The literature has been attentive towards family dynamics and transition when an adoptive child is introduced into a family. Foli, South and Lim (2012) note that the assessment of depression amongst parents postadoption is fairly recent. This paper helps to develop this knowledge-base and adds to theoretical perspectives using contemporary on-line data collection techniques, and qualitative data analysis of a subset of data to expand a pre-existing theory deductively. Foli et al. collect data from respondents who are quite special in nature, apart from their high education and ‘comfortable’ social characteristics. Firstly, they all accessed an online support group; secondly, despite showing some characteristics of depressive symptoms, they contribute towards the study after completing over 100 closed questions; and thirdly, some participants offer up to two pages of text. The first issue is the engagement with on-line social interaction which the authors have acknowledged could be part of individual’s supportseeking strategy; alternatively it could be an easy way to secure

For pregnant women near full term with intrauterine growth restriction, induction of labour does not affect risk of adverse neonatal outcome or caesarean section compared with expectant management.

10; either way respondents were motivated which questions the presence of even mild depressive symptoms. However, it could be that engagement with on-line groups is more developed in some communities, hence the ‘norm’. In addition, the internet has been shown to be effective in gathering sensitive data (Sharkey et al., 2011) particularly when the ‘problem’

Author's responseMS010150—Hospital postnatal care: obtaining the views of Pakistani and indigenous ‘white’ women

Commentary on: BoersKEVijgenSMBijlengaD; DIGITAT study group. Induction versus expectant monitoring for intrauterine growth restriction at term: randomised equivalence trial (DIGITAT). BMJ 2010;341:c7087.

Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK

Aim: To compare the quality of hospital postnatal care for Pakistani and indigenous ‘white’ women. Design: A prospective comparative survey of women from two health districts. Both quantitative and qualitative data were collected by interviewing women and reviewing maternity casenotes. Setting:Twenty GP practices in two districts within a northern NHS region. Women were recruited between July 1995 and August 1996. The interviews were completed during March 1997. Participants: Two hundred and twenty five women were invited to take part in the study, 187 (83%) agreed. Of these, 153 had the first interview and 139 the second. Main outcome measures: A comparison of Pakistani and ‘white’ womens expectations and views of their hospital postnatal care. Results: There were 288 positive and 331 negative comments and content analysis revealed nine themes. Pakistani and ‘white’ women commented upon practical care, technical care and staff the most (both positively and negatively) and this held up in both districts. Few women commented upon communication, although there were several aspects of care that depended upon effective communication. Better continuity of carer for white women was found in both districts. Conclusion: Failing to meet womens expectations and preferences is not a predictor of poor quality of care. Lack of complaints directly regarding communication does not mean that was appropriate. Continuity of carer needs to improve for Pakistani women.