Review question/objective

The objective of this review is to explore women's experiences of a termination of pregnancy for fetal abnormality in a United Kingdom (UK) hospital setting.

Background

There are many reasons why women may choose an abortion in the UK since it was legalized in 1967 by the Abortion Act (amended by the Human Fertilization and Embryology Act 1990).1 The Abortion Act covers England, Scotland and Wales, (but not Northern Ireland) and in these regions an abortion can be performed at up to 24 weeks gestation, provided that the termination of pregnancy is performed by a registered medical practitioner. A legally induced abortion must be certified by two registered medical practitioners as being justified under one or more of the following grounds:

A. the continuance of the pregnancy would involve risk to the life of the pregnant woman greater than if the pregnancy were terminated

B. the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman

C. the pregnancy has not exceeded its twenty-fourth week and the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman

D. the pregnancy has not exceeded its twenty-fourth week and the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of any existing children of the family of the pregnant woman

E. there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.2

In the case of an abortion for fetal abnormality (ground E), a pregnancy may be terminated at any stage (including and exceeding 24 weeks) if there is a substantial risk that if the child was born it would suffer from such physical and mental abnormalities as to be severely handicapped.3 In 2013 in England and Wales, 2732 abortions (1%) were carried out for fetal abnormalities (ground E).2 Most were carried out before 20 weeks but as many as a third (n=904) were carried out in the second half of the pregnancy.2 Congenital malformations were reported as the principle medical condition in almost half (48%).2 The most commonly reported malformations were abnormalities of the nervous system (24%), and abnormalities of the musculoskeletal system (8%).2 Chromosomal abnormalities were reported as the principle medical condition for 37%.2

Suspicions of a fetal abnormality may be raised in two ways: through knowledge of the family history as well as routine antenatal screening.3 Tests available to women for screening of fetal abnormality include invasive tests such as an amniocentesis or chorionic villus sampling where samples are taken from the amniotic fluid and the placenta respectively, and non-invasive tests, that is, ultrasound scanning and blood tests.

The 2010 report from the Royal College of Obstetricians and Gynecologists working party argued that it was essential that, once a fetal abnormality is suspected, a woman is placed on a clearly-defined care pathway.3 This should involve a second opinion and then referral to a fetal medicine unit. The report also noted how difficult making the decision to terminate a pregnancy can be for men and women who have had a diagnosis of an abnormality and therefore emphasized the importance of non-directive and non-judgmental support for women. They also emphasized the importance of ensuring that staff are trained in communicating bad news and the need for input from medical specialists from pediatrics, neonatology and genetics, and not just obstetrics, into the decision-making process.3

There are two methods of abortion - medical and surgical. A medical abortion involves the use of the abortifacient drug mifepristone, (also known as RU486), and surgical methods involve vacuum aspiration and/or dilatation and evacuation (D&E).2 Of the 2732 abortions performed underground E in 2013, 73% were performed medically and 27% surgically.2 The process of having a termination for fetal abnormality varies depending on the condition detected. Early identification of abnormality will result in a surgical termination of the pregnancy while diagnosis after 14 weeks will involve a medical termination. This involves the women going through labor which may come as a shock to some of them. Later terminations, particularly after 24 weeks, will not only require a medical termination of the pregnancy but most likely feticide too.3

Added to this is the emotional impact of the experience. Researchers have found high levels of grief in women following a termination for fetal abnormality with higher levels of grief for those women whose first pregnancy was terminated and those who have not since had a live baby.4 Other research has highlighted the stressful nature of the experience.5 In an investigation into parental experiences of care, Slade et al.5 interviewed women who had both surgical terminations and medically-induced terminations. They found that those women having a medically-induced abortion found seeing the fetus particularly difficult. Both groups rated their experiences positively, although the need for more information and the chance to ask questions were highlighted by both groups. As the researchers noted, knowledge about the health care these women received is important for providing improved care in the future.

The importance of good care for women who undergo such a procedure cannot be understated and as such a synthesis of qualitative research in this area will contribute towards informing processes and guidelines when caring for women who undergo a therapeutic abortion in the UK. A search of both the University of York Centre for Reviews and Dissemination and the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports have indicated that this work has not yet been done.

Inclusion criteria

Types of participants

This review will consider studies that include women who have undergone a termination for fetal abnormality in a UK hospital setting.

Types of intervention(s)/phenomena of interest

The phenomena of interest for this review are the experiences of women undergoing a termination for a fetal abnormality.

Context

The studies that are included in this review will be UK-based and will cover women's experiences of termination of fetal abnormality. Included will be any research which considers the following:

* Diagnosis of abnormality

* Experiences in hospital of termination

* Follow-up services provided by the hospital.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

In the absence of research studies, other text such as opinion papers and reports will be considered.

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. Studies published between 1990 and 2015 will be considered for inclusion in this review. This date range reflects the most recent amendment to the 1967 Abortion Act in the UK which was in 1990 when the gestational limit for abortions was lowered from 28 weeks to 24 weeks. A 28-week limit had originally applied for all grounds but the amendment introduced a time limit of 24 weeks for grounds C and D and removed the time limits on grounds A, B and E.6

The databases to be searched include:

ASSIA (Applied Social Sciences Index and Abstracts)

MEDLINE

CINAHL

Web of Sciences

BMJ Open

BNI (British Nursing Index)

Informa Healthcare

Intermid

Internurse

Initial keywords to be used will be:

Foetal/fetal

abnormality/abnormalities

anomaly/anomalies

ground E

abortion

termination

late abortion/termination

foeticide

qualitative

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

Data extraction

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.

Data synthesis

Qualitative research findings will, where possible be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.

Conflicts of interest

There are no conflicts of interest.

References