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