Skip to main content

Table 2 Characteristics of included studies presented as studies exploring experiences of parents who continued pregnancies, terminated pregnancies, and studies exploring both

From: Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature

 

Study

Research Aims

Sample size & Diagnosis

Participant Characteristics

Data Collection

Methodology & Analysis

Themes

CASP Rating (Cate-gory)

Studies describing pregnancy continuation

1

Helm et al. [46] 1998 USA

To explore the experience of mothers who continued a pregnancy following diagnosis of Down Syndrome (DS)

Ten mothers who had received a prenatal diagnosis of DS

Six Catholic, three Protestant, one Jewish

All European-American

Aged 28–42

Nine living with husband, one single

Recruited through a University affiliated centre at local hospitals. Mothers expressed interest in the study before being contacted. Semi-structured, open-ended interviews were then conducted over 2–4 h

Thematic analysis with approximately 10% of interview content used

Religion

Morality

Personal experience with people with disabilities. A

Previous infertility

Family

Friends

Religious leaders

Clinicians

Genetic counsellors

8 (A)

2

Redlinger-Grosse et al. [47] 2002 USA

To explore parents’ experiences in deciding to continue a pregnancy, given the prenatal diagnosis Holoprosen-cephaly (HPE)

Twenty-four parents who had received a prenatal diagnosis of HPE

Fourteen women and 10 men

Aged 23–50

Twenty-one white, 2 Hispanic and 1 Asian

Twenty-two married, 1 single and 1 separated or divorced.

Twenty-three had living child, 1 had no living children

Thirteen Catholic, 7 Protestant and 4 Baptist

Twelve completed high school, 6 college, 5 graduate degree and 1 post-graduate degree

Fifteen were employed full time, 7 unemployed and 2 worked part-time

Participants were recruited from a conference, research centre, university and support services for families affected by HPE during 2000. In-person interviews were conducted for 8 parents attending the conference, with telephone interviews for 16 parents recruited through the remaining sites, using open-ended questions

Thematic analysis [48]

Religion

Fatalism

Morality

Valuing mother role

Previous infertility

Prior pregnancy termination

Anticipated guilt

Personal connection to HPE

8 (A)

3

Rempel et al. [49] 2004 USA

To explore parents’ decision-making and interactions with health care professionals during the antenatal diagnosis of Coronary Heart Diseases (CHD)

Thirty-four parents who had received a prenatal diagnosis of CHD

Nineteen mothers and 15 fathers

All intended to continue with the pregnancy

Over half first-time parents

Gestational age when diagnosed was 18–36 weeks

In-depth, open-ended interviews during the pregnancy, 1 month after the baby’s birth and between 4 and 6 months after birth. The interviews ceased following data saturation

Symbolic interactionism guided analysis [50]

Search for information,

Impact on themselves

Impact on wider family

Health care professionals

Attachment

8 (A)

4

Hickerton et al. [51] 2012 Australia

To explore parents’ experience of continuing a pregnancy where a genetic condition was detected prenatally

Nine parents

Five mothers and 4 fathers of children < 10 years old with life-limiting disorders

All had prenatal diagnosis, or were warned of high reproductive risk

Four skeletal disorders, 2 other organ difficulties, 2 Trisomy syndromes and 1 other chromosomal disorder

All fluent in English

All married and lived together

Purposive sampling via advertisement in the newsletter of a genetic support network, or through receiving a letter from staff at genetic clinics

Semi-structured face-to-face interviews were conducted with mothers and fathers separately, ranging from .5–.2 h

Grounded Theory using a constant comparative approach [52]

Morality

Quality of life

9 (A)

5

Hurford et al. [53] 2013 USA

To explore women’s decisions to continue a pregnancy affected by DS after prenatal diagnosis, and the factors that affected their decision

Fifty-six mothers who had received a prenatal diagnosis of DS

Women aged between 21 and 44

Forty-one Caucasian, 8 Hispanic, 3 Asian, 2 African American, and 1 other,

Fifty Christians, 2 Atheist, 1 Muslim,1 Jewish,

Forty-four very/somewhat religious, 11 not/not very religious,

Thirty-two had a college education, 17 postgraduate qualifications, 5 high school education

An information sheet was sent through respective organizations

This information sheet provided the web address for the online survey which included 9 free response questions analysed for this study

Thematic analysis

Attachment

Religion

Morality

Personification of fetus

Family

Friends

Belief fetus is alive

Fatalism

Previous infertility

8 (A)

6

Guon et al. [54] 2014 Worldwide

To explore decision-making of parents who continued their pregnancy after a pre-natal diagnosis of Trisomy 13–18

One-hundred and twenty-eight parents who had received a prenatal diagnosis of Trisomy 13–18

Thirty men and 98 women who had accessed Facebook and other support sites dedicated to Trisomy 13–18.

One hundred and six were from the US, 6 Canada, 6 UK, 9 from 12 other countries

Parent’s median age was 38

All completed high school, 94 at least one university degree, 27 also completed postgraduate studies

One-hundred and nine were religious, with 73 attending religious services

All were parents of children who live(d) with full T13–18, mosaicism, and other structural variations involving chromosomes 13 and 18

Ninety-seven had full T13 or 18 The median age of survivors was 3 years

Participants were recruited on English speaking, online support sites relating to Trisomy 13–18 respondents completed a questionnaire, with 5 open ended questions from this used within the study analysis

Thematic qualitative content analysis

Morality

Religion

Personal values

Attachment

Uncertainty

Hope

Desire to be a parent

Desire to meet their child

Pressure from others

9 (A)

7

Gesser-Edelburg & Shahbari [55] 2017 Israel

To explore Muslim Arab women’s reasons for continuation of a pregnancy following the detection of a congenital anomaly

Twenty-four mothers who had received a diagnosis of congenital abnormal-ities

Recruited between 2014 and 2015

All married

All Muslim

Aged between 21 and 39

Five participants were recruited by professionals; the rest were through snowballing

Interviews lasted 50–60 min, with recruitment ceased following saturation

The questions were open-ended and probes were used to elicit more information

Constructivist classical grounded theory [56]

Religion

Fatalism

Attachment

Pressure

9 (A)

8

Moudi & Miri-Moghaddam [57] 2017 Iran

To explore the reasons women with a pregnancy affected by Beta-Thalassemia (B-TM) continued with pregnancy

Thirty-nine mothers who had received a prenatal diagnosis of BTM

Women who had continued with pregnancy

Thirty-three were of Sunni religion and 6 Shiite Muslims

Aged between 20 and 34 years

Five of the women had previously aborted 1 pregnancy, whilst one woman had aborted 2 or more previous pregnancies

Exploratory qualitative methods after purposive sampling were used to identify potential cases In-depth, semi-structured interviews were conducted between 2012 and 2013, terminating when data saturation was reached Interviews lasted approximately 1 h and used open-ended questions

Grounded theory principles [56]

Belief in accuracy

Trust in professionals

Lack of understanding

Consequences to family

Family opinions

Future fertility

Preference for large family

Preference for male fetus

Lack of siblings

Hope for family with husband

Morality

Religion

Attachment

9 (A)

Studies describing pregnancy termination

9

Bryar [58] 1997 USA

To explore the experiences of women terminating a pregnancy in the 2nd trimester due to discovery of a fetal abnormality

Three women who had received a diagnosis of severe fetal abnormal-ity

Women living in USA who had attended a clinic for abortion

Aged between 30 and 40 years

All married, white, middle class graduates

Convenience sampling, approaching all women attending follow-up visit 4 weeks after their abortion, within a single private outpatient perinatal practice

Unstructured interviews were completed 4–6 weeks after termination

The interviews lasted 75–90 min and asked open questions with additional questions asked for clarification

Phenomenology [59]

Religion

Family impact

Societal expectations

Impact on self

Potential future difficulties

Seriousness of disorder

9 (A)

10

Ferreira da Costa et al. [60] 2005 Brazil

To explore the experience of women in Brazil during the process of abortion for fetal disorder

Ten women who had received a diagnosis of severe fetal disorder

Women who had terminated a pregnancy following legal authorisation in 2002

Aged 17–29

Two were single

All had completed at least primary school education

Interviews were conducted 40 days after termination when the women returned for post-termination check- up and genetic counselling

The sample was determined by saturation, with semi-structured interviews following a thematic script

Thematic analysis with the methodology of Minayo [61] was used

Seriousness of disorder

Risk to own health

Reducing suffering

9 (A)

11

Leichtentri-tt [62] 2011 Israel

To explore the experience of women who undergo feticide in Israel

Thirteen women who had received positive prenatal diagnosis

Aged between 28 and 41

All married, with one woman remarried

Five received a prenatal diagnosis of Brain or (CNS) defects, 3 received diagnosis relating to other organ difficulties, 2 heart defects, 1 sex chromosome abnormalities, 1 other chromosome abnormalities and 1 fetal growth restriction

The women were recruited from one of the largest hospitals in Israel, and through snowballing techniques between 2008 and 09 Interviews took place 4–24 months after the termination using in-depth semi-structured interviews lasting approximately 3 h

Thematic analysis using the approach of Gubrium and Holstein [63]

Pressure from professionals

Uncertainty

Preventing suffering

Time pressure

Legal requirements

Family opinion

9 (A)

12

Benute et al. [64] 2012 Brazil

To explore women’s reasons for termination of pregnancies after ultrasound presented findings consistent with lethal fetal malformation

Two-hundred and forty-nine women who received positive prenatal results

Women recruited between 1998 and 2008

Aged between 18 and 33 years

One-hundred and thirty-five received diagnosis of anencephaly, 26 urinary disorders, 24 genetic syndromes, 21 CNS, 21 multiple MF, 13 Column MF, 8 conjoined twins and 1 abdominal wall disorder

Fetus death prior to the interview led to exclusion

One-hundred and sixty-two were Catholic, 54 Evangelical

One-hundred and seventy-seven cohabited with partner, 72 single

One-hundred and seventy-two opted for termination, 77 had not requested abortion

The sampling was carried out by exhaustion. A psychologist conducted open interviews immediately after the ultrasound diagnosis, with each interview lasting approximately 1 h

Content Analysis was utilised

Reducing suffering

Guilt

Morality

8 (A)

13

Gawron et al. [65] 2015 USA

To explore the reasons for termination timing among patients whose pregnancy was effected by fetal abnormalities

Thirty women who had received diagnosis of severe fetal disorders

English speaking, adult women presenting for pregnancy termination between 12 and 24 weeks at a tertiary referral family planning clinic between 2011 and 12

Aged between 26 and 44

All were married or in a relationship

All had some college education, 12 post-college qualifications

Twenty were employed

Sixteen were Christian, 9 Athiest, 3 Jewish, 1 Muslim and 1 Hindi

Several women had previously terminated pregnancies, including 3 for fetal abnormalities

Convenience sampling with phone or pre-operative consultation recruitment until data saturation reached

The interview occurred on the first of a 2-day termination process, prior to medical team interaction

Semi-structured interviews using guide focused on decision-making was used, with follow-up questions lasting up to 60 min

Interviews were analysed using latent grounded theory [56]

Partner

Shared decision-making

Family

Friends

Religion

Suffering for fetus

8 (A)

14

Ioannou et al. [66] 2015 Australia

To explore the experiences of couples that were both identified as carriers of Cystic Fibrosis (CF), and the reproductive decision-making and psychosocial impact when pregnant

Four parents who had received a prenatal diagnosis of CF

Four Individuals forming 2 couples taken from a larger sample included within the study were screened between 2006 and 2012 and found to be in a ‘carrier couple’

One of the pregnancies had occurred through IVF

Both pregnancies were terminated

Open-ended questions, informed by the literature and process of screening, were used in the semi-structured interview schedule

Inductive content analysis [67]

Disbelief

Hope

Prior decision-making

9 (A)

Studies describing pregnancy termination and continuation

15

Sandelows-ki & Jones [68] 1996 USA

To explore the experience of couples who learn during pregnancy that their baby has a severe fetal impairment

Twenty-seven parents who had been prenatally diagnosed with a severe fetal disorder

Fifteen women and 12 of their male partners (11 of whom were married couples)

Women aged between 19 and 40, men between 22 and 39

Largely Euro-American, except for 1 African-American couple, 1 African-American woman, and 1 Asian-American woman

Two had terminated previous pregnancies for reasons other than fetal health

Eight women continued their pregnancies, 2 losing their babies within 1 h and 1 week of birth, 5 women terminated pregnancies with live fetuses and 2 women terminated pregnancies after a fetal demise

Forty interviews completed with 10 couples and 2 women who were interviewed 2–5 times, with 2 couples and 1 woman interviewed once

All participants were interviewed within 11–60 days of learning of the fetal impairment or termination

Five couples terminating pregnancies were subsequently interviewed around their due date and the anniversary date of termination

Couples continuing pregnancies were interviewed 1–2 times during pregnancy and 1–4 times after delivery Two women conceived during the study and they were interviewed during a second round of prenatal screening Interviews were conducted in a minimally structured manner, with questions asked only to clarify

Narrative analysis [69]

Reducing own distress

Reducing fetus’ distress

Religion

Attachment

Own needs

Future needs of fetus

Ability to care for child with disability

8 (A)

16

Locock, & Alexander [70] 2006 UK

To explore how men experience fetal screening and diagnosis

Seventeen parents were recruited following positive prenatal screening

Eight had received prenatal diagnosis of chromosomal defects, 5 heart defects, and 4 neural tube defects

Parents were interviewed either during pregnancy or within 2 years after birth or termination between 2003 and 2004

Participants were recruited using a maximum variation sample, through a national network of GPs, antenatal clinics and classes, national voluntary associations and support groups Narrative interviews were conducted

Modified grounded theory approach [71]

Legality

Exclusion

Joint decision-making

Role as supporter

Focussing on positives

Seeking information

Hard facts

Intuition

9 (A)

17

Balkan et al. [41] 2010 Turkey

To explore factors influencing parental decisions to terminate or continue a pregnancy with chromosomal abnormality diagnosed prenatally

Seventy-six parents were recruited following positive prenatal screening

Thirty-eight couples from South-East Turkey who received positive prenatal diagnosis between 2004 and 07

All were Muslim

Thirty-two of the forty receiving a diagnosis of DS terminated, all receiving Trisomy 18 diagnosis terminated, and 8 of the 10 receiving a diagnosis of Turner Syndrome (TS) terminated. None of the 6 parents receiving a diagnosis of Klinfelter Syndrome (KS) terminated, with all 4 parents receiving a diagnosis of 47XXX, 2 receiving marker chromosome abnormality or 4 receiving Trisomy 13 terminating

Semi structured, face-to-face interviews lasting one to several hours

No explanation of exact methodology However, authors report that qualitative analyses were conducted

Religion

Seriousness of condition

6 (B)

18

France et al. [72] 2012 UK

To explore the role of women’s and couple’s experiences of disabilities in influencing their decision regarding termination

Twenty-eight parents, who had received positive prenatal diagnosis

Twenty-four women and 4 of their male partners with prior experience of a disability

Ten had received a prenatal diagnosis of autosomal disorders, 3 structural disorders, 3 heart defects, 5 blood disorders, 3 multiple disorders and 1 muscular disorder

Twenty had terminated and 8 continued with their pregnancy

Interviews completed 1–12 years after pregnancy

Participants aged 23–52

One participant was Pakistani, 1 Black Sierra Leone, 3 Black Nigerian and 23 White

Two were single, 3 cohabiting and 23 married

People’s experiential knowledge of disability included having a disorder themselves, living with a disabled sibling, and talking to or observing family, friends, acquaintances or clients who had a disability or a disabled relative

Data was collected as part of larger scale study Interviews were originally conducted by two researchers between 2004 and 06 Narrative interviews with participants from a purposive sample Recruitment via GPs, hospital consultants, nurses, support groups and word of mouth Interviews lasted 1–3 h

Framework analysis influenced by Bury’s [73] and Lawson & Pierson’s [74] frameworks

Shared decisions with partner

Other’s experiences of condition

Experiential knowledge

Their own suffering

Suffering of fetus

Religion

Medical advice

Imagined futures

9 (A)

19

Huyard [43] 2012 Belgium, France & Germany

To explore the information parents, whose child has an intellectual disability, considered important when deciding whether to terminate following prenatal diagnosis

Four participa-nts from a larger presented sample, who had received a prenatal diagnosis of a severe fetal disorder

Thirty-three interviews were conducted in Germany, France, and Belgium between 2008 and 10 among women, men, or couples who had at least one child with a life-limiting condition

Only 4 participants from this sample had experienced a prenatal diagnosis

Of the relevant 4 parents, 3 had continued with the pregnancy, and 1 had terminated

The interviewees were recruited through self-help groups of parents whose children have an intellectual disability, or through professionals working in schools or residential centres for people with intellectual disability Semi-structured interviews were conducted sequentially, and followed a 30-item guide

Classical grounded theory methods [56]

Longing for child

Fatalism

Ability to cope

Morality

6 (B)

20

Hodgson et al. [75] 2016 Australia

To explore social and professional supports utilised by parents at the time of lethal, life-limiting, or severely debilitating fetal diagnosis

One-hundred and two parents who had received a severe fetal diagnosis

Seventy-five women and 27 men, all were English speaking

Purposive, convenience sampling was used Interviews were conducted with couples using a semi-structured guide following a narrative and chronological style

Thematic analysis

Provision of information

Attitude of information giver

Likely prognosis

Termination options

Previous views

Perceived impact on family

Other’s perceptions

Other’s experiences

9 (A)

21

Fleming et al. [42] 2016 Switzerland

To explore the experiences of parents following severe fetal diagnosis

Thirty-two parents who had received a severe prenatal diagnosis

Seventeen mothers, 1 father and 7 couples were recruited between 2013 and 14 from the German speaking part of Switzerland

All had experienced a lethal fetal diagnosis in the previous 5 years

Participants were recruited through a telephone counselling service available to anyone with interest in perinatal loss Data was collected by semi-structured interviews lasting 40–90 min

Thematic analysis in accordance with the method of Braun and Clarke [76] was utilised

Time pressure

Searching for information

Financial implications

6 (B)

22

Reed & Berrier [77] (2017) USA

To explore decision-making following prenatal diagnosis of DS

Nine parents who had received a diagnosis of DS

Two couples and 5 mothers recruited between 2012 and 2013

All had received a prenatal diagnosis within three years prior to the interview

Four had continued their pregnancy, 3 had terminated and 2 had continued with an adoption plan

Aged between 26 and 52

Seven females and 2 males

Seven Caucasians, 1 Hispanic, and 1 Bi-racial participant

Four participants did not affiliate to any religion, 2 were Catholic, 2 Protestant and 1 Lutheran

A convenience sample was used to recruit participants, with expansive cognitive interviewing utilised Interviews were 90 min in length and directed participants to read and complete the questionnaire by “thinking aloud” whilst “concurrent probing” encouraged participants to further elaborate

Thematic analysis [78]

Pressure from professionals

Provision of information

Scientific information

Confidence in professionals

Ability to care for child

Family impact

Support groups

Prior experience with DS

Other’s experiences

Age

Attachment

Personal values

Anticipated quality of life

8 (A)