Exploring parents’ experiences and holistic needs following late miscarriage: a narrative systematic review

Figures & data

Table 1. Concepts and synonyms.

Subject	Late miscarriage	Experience	Needs	Type of research
Woman/Mother Parents Not Father (only)	Foetal/Fetal death Perinatal death Spontaneous miscarriage Not Termination of pregnancy for lethal anomaly Not Stillbirth Not Early miscarriage Not Foetal/Fetal loss at limit of viability defined by foetal/fetal weight Not Extremely Preterm baby born alive Not Risk Factors Not Aetiopathogenesis	Trauma Grief Perinatal Bereavement PTSD Depression Anxiety Stress Not Recurrent Miscarriage Not Infertility Not Assisted Reproduction Treatment Not Pregnancy following pregnancy loss	Support Peer Support Counselling Psychotherapy Compassionate care Not Physical clinical needs such as lactation suppression	Quantitative Qualitative Mixed-methods Peer-reviewed Primary Research Not Grey Literature such as opinion pieces, books chapters Not Dissertations

Table 2. Inclusion and exclusion criteria.

Aspect	Inclusion	Exclusion	Rationale
Year of publication	Studies from 1990	Studies prior to 1990	The terms of viability were reviewed and amended (from 28 weeks to 24 weeks) in the review of the Human Fertilisation and Embryology Act (1990)
Language of publication	English/Italian	Any other languages	Author only fluent in those languages
Country study performed in	Any country	None	To analyse studies from as many different cultural backgrounds as possible
Type of research	Primary research	Non-primary research	To only analyse studies whose data has been collected from the original source
Methodology	Any: qualitative, quantitative or mixed	None	To identify a comprehensive number of studies constructed on different approaches
Quality of study	Peer-reviewed	Non-peer-reviewed	To analyse only high-quality studies
Population/demography of the study	Women/couples experiencing pregnancy loss between 14 + 0 and 23 + 6 weeks of gestation.	Women/couples experiencing pregnancy loss: Up to 13 + 6 weeks of gestation After 24 + 0 weeks of gestation. and Midwives’/Clinicians’ perspective Fathers’ perspective only	To investigate the population identified in the research question
Focus of study	Focus on either: the lived experience of late miscarriage the psycho-social consequences of late miscarriage from the parents’ perspective the psychosocial interventions and treatment in support of those families and their outcomes	Focus on: physical outcomes following late miscarriage risk factors for late miscarriage clinical management and treatment of late miscarriage late miscarriage in the context of recurrent pregnancy loss TOP for fetal anomalies Perinatal loss/bereavement studies where less than 50% participants had a late miscarriage or where the gestational age at time of loss was unspecified. Pregnancy following miscarriage	To focus on the relevant studies identified by the research question

Table 3. Literature search strategy.

Miscarriage (14–23 + 6 weeks)	Type of support	Outcomes from miscarriage experience	Subject
(MH ‘Abortion, Spontaneous’) OR ‘Miscarriage’ OR (MH ‘Perinatal Death’) OR ‘Fetal loss’	(MH ‘Midwives’) OR (MH ‘Counseling Service (Saba CCC)’) OR (MH ‘Bereavement Support (Saba CCC)’) OR (MH ‘Psychosocial Care (Saba CCC)’) OR (MH ‘Peer Group’) OR (MH ‘Support Groups’) OR (MH ‘Psychology’) OR (MH ‘Psychotherapy’) OR (MH ‘Psychoanalysis’) OR (MH ‘Patient Centered Care’) OR (MH ‘Holistic Care’) OR (MH ‘Support, Psychosocial’)	(MH ‘Trauma’) OR (MH ‘Psychological Trauma’) OR (MH ‘Stress, Psychological’) OR (MH ‘Grief’) OR (MH ‘Bereavement’) OR (MH ‘Stress’) OR (MH ‘Life Change Events’)
miscarriage or abortion spontaneous or pregnancy loss or fetal loss or foetal loss or second trimester miscarriage or 2nd trimester miscarriage or late miscarriage or perinatal loss	Counsel*or therap* or psychotherapy* or treatment or psycholog* or CBT or cognitive behavior* therapy or cognitive behavior* treatment or compassionate care or compassion or CMT or compassionate mind training or Eye Movement Desensitization Reprocessing Therapy or EMDR therapy or psychoanalysis	trauma or ptsd or post-traumatic stress disorder or traumatic events or traumatic experience* or grief or loss or perinatal bereavement or anxiety or depression or stress or mental health or wellbeing or well-being or well-being or psychological trauma	+ (woman or women or mother* or parents) OR TI (woman or women or mother* or famil* or parents) OR AB (woman or women or mother* or famil* or parents)

Table 4. Articles found by databases.

Database	Articles found	Potentially relevant
CINAHL	800	334
Medline	712	66
PsycInfo	452	216
Psychology and Behavioural Science Collection	216	78
	Tot: 2180	Tot: 694

Table 5. Categories identified from screening process.

Categories	Description	Number of articles
Relevant	Articles which refer to late miscarriage as: pregnancy loss between 14 + 0 and 23 + 6 weeks of gestation 50% or more of the participants had pregnancy loss between 14 + 0 and 23 + 6 weeks of gestation.	6
Miscarriage	Articles referring to miscarriage such as: early miscarriage (up to 13 + 6 weeks of gestation) gestation unspecified mean gestational age at loss before 14 + 0 weeks	29
Stillbirth	Articles referring to stillbirth such as: gestation unspecified more than 50% of participants had loss after 24 + 0 weeks mean gestational age at time of loss after 24 + 0 weeks	44
Perinatal loss	Articles referring to perinatal loss such as: gestation unspecified more than 50% of participants had loss before 14 + 0 weeks, or after 24 + 0 weeks, or postnatally mean gestational age at time of loss outwith late miscarriage gestational age bracket	96
Physical not Psychological	Articles which focus on the physical physiopathology, risk factors, clinical care outcomes and clinical follow-up of miscarriage.	23
Clinician perspective	Articles which explore the effects of miscarriage from the clinicians’ (midwives, obstetricians, nurses) point of view.	31
Non-primary research	Articles such as literature reviews, book chapters, guidelines and protocols.	38
Dissertations	Articles which refer to dissertations, therefore not peer-reviewed.	30
Recurrent miscarriage	Articles which explore the psychosocial effect of recurrent miscarriage (3 or more miscarriages) with unspecified gestation at time of loss.	15
TOP for lethal anomaly	Articles which explore the psychosocial effect of TOP for lethal anomaly, with or without mention of gestational age.	2
Grey literature	Articles such as specialised magazines pieces, opinion pieces, pamphlets, interviews, personal accounts, web pages.	102
Pregnancy following loss	Articles which explore the psychosocial effect of the subsequent pregnancy following a loss with or without mention of gestational age at time of loss.	21
Fathers only perspective	Articles which explore the psychosocial effects of miscarriage from the fathers’ point of view only.	1
Not found	Articles not found despite being requested through the Interlibrary Loans system of Edinburgh Napier University.	4

Figure 1. Prisma flow diagram.

Table 6. Appraisal of articles selected following CASP qualitative studies and CASP cohort study checklists.

Author, title, date, location.	Participants	Aims	Method	Findings	Value
Cullen, S., Coughlan, B., McMahon, A., Casey, B., Power, S., & Brosnan, M. Parents’ experiences of clinical care during second trimester miscarriage.  2018 Ireland	Sample size: 14 parents - 9 mothers and 5 fathers. Recruitment strategy: Purposive sampling. Parents contacted 6-24months following second trimester miscarriage. Bereavement midwife contacted families and obtained consent to provide information to researcher. Researcher obtained consent form prior to interview. Recruitment continued until data saturation achieved. Participants information: participants demographic information such as: age, gestational age, ethnicity, obstetric history, length of time since miscarriage is reported.	Aim: explore parents’ experience of second trimester miscarriage clinical care from diagnosis through to follow up Rationale: assess if existing literature on perinatal loss relates to the experience of second trimester miscarriage Relevance: expand knowledge of experience of second trimester miscarriage.	Method: Qualitative Design: Ethnography Data collection: Semi-structured interviews audio recorded and transcribed verbatim. Bias/Reflexivity: Researcher kept reflective diary to reduce bias. There is mention of ethical values of research process. Ethical considerations: Ethical approval obtained from both Hospital and University committee. There is evidence of protocol to support participants in case of emotional distress.	Data analysis: Thematic network to extract basic themes, organising themes and global themes. Focus: ‘Clinical care needs’ Clear statement of findings: Five organising themes are listed: ‘medical treatment received during the miscarriage’, ‘pain relief’, ‘length of hospital stay’, ‘going home to prepare for the delivery’ and ‘follow-up appointment’. Discussion of findings: Each organising theme is discussed reporting participants own words and against available literature. -Effective analgesia for labour and birth in second trimester. -Waiting at home for induction of labour adds to psychological stress and trauma. Also, gives chance to come to terms with loss and prepare for birth. -Reason for miscarriage and clear communication gives parents sense of closure. -Value of being cared for in an area away from crying babies.	Relationship with existing knowledge: findings concur with those of previous studies in regards of pain relief options, waiting time before induction of labour, clear communication and being separate from crying babies. Applicability to different population: study conducted in one hospital in Ireland. Caution is advised in applying finding in other contexts. Implications for further research: suggested further research on pain relief options and parents’ experiences of going home after diagnosis of second trimester miscarriage. Limitations: study conducted in one hospital in Ireland. Researcher experience as influencing factor in analysis – reflexivity practices mentioned.
Mulvihill, A., & Walsh, T. Pregnancy loss in rural Ireland: An experience of disenfranchised grief.  2014 Ireland	Sample size: 8 participants. 10 initial volunteers, 2 withdrew. Recruitment strategy: Purposive sampling stratified according to gestation. Participants information: participants demographic information such as: age, gestational age at time of loss, marital status, existing children/previous pregnancy loss, occupation reported. 50% of participants (4) had late miscarriage (between 15 and 19 weeks of gestation).	Aim: understand pregnancy loss through constructivist epistemology approach. Rationale: obtain better understanding of ‘essential nature’ of pregnancy loss.	Method: Qualitative Design: Interpretative Phenomenological Analysis (IPA) Data collection: Semi-structured interviews audio recorded and transcribed verbatim. Bias/Reflexivity: Not mentioned. Ethical considerations: Ethical approval obtained from Hospital involved in the study.	Data analysis: Thematic findings following IPA approach. Clear statement of findings: Three dominant themes are listed: ‘communication’, ‘hospital’s physical environment’ and ‘presence of disenfranchised grief’. Discussion of findings: Each theme is discussed and explored reporting participants own words and against available literature. -Communication: sensitivity in breaking bad news, timely provision of information, professionals not aware of history. -Hospital physical environment: preferences re Ward type, lack of privacy as additional stressor, waiting areas shared with pregnant women -Disenfranchised grief: social isolation as people feel unable to breach the topic of loss, managing grief with the partner support, coping with other pregnant women in their network. -Follow up support: all participants received medical follow up. Only 1 participant received emotional support following discharge. The majority of participants wishes for structured emotional follow up support.	Relationship with existing knowledge: findings concur with those of previous studies in regards of empathetic communication, appropriate information giving, disenfranchised grief, meaning of pregnancy more significant than length of pregnancy, effect of other pregnant women in patient network, emotional follow-up to normalise grief responses. Applicability to different population: study conducted in one hospital in Ireland. It is suggested that all Irish hospitals should offer support following pregnancy loss. Implications for further research: Not mentioned. Limitations: study conducted in one hospital in Ireland. Voluntary participation: participation is more likely from whom had overall positive experience rather than negative. Only women experience.
Corbet-Owen, C., & Kruger, L.-M. The health system and emotional care: Validating the many meanings of spontaneous pregnancy loss.  2001 South Africa	Sample size: 8 participants. English or Afrikaans speakers. Recruitment strategy: Purposive sampling. Participants were recruited to represent a range of different circumstances including 3 participants who described the pregnancy as ‘unwanted’. Health professionals’ referral and individuals requesting to participate as a result of word of mouth. Participants completed biographical questionnaire and informed consent form. Participants information: participants demographic information reported in 2 tables. Table 1: age, race, home language, religious context, financial class, marital status Table 2: age at time of loss, number of children, desire for pregnancy, plans for pregnancy, reported quality of relationship with partner, number of losses, sex of child lost, stage of pregnancy at loss. 5 participants (62.5%) reported loss between 16 and 24 weeks of gestation)	Aims: determine the meaning of pregnancy loss had for participants, explore their emotional need following loss, assess if and how health professional recognise and address those needs. Rationale: explore how women in particular social contexts construct their experiences of pregnancy loss. Relevance: expand knowledge of patient experience and on doctor-patient relationship in the context of pregnancy loss.	Method: Qualitative Design: Social Constructionist Theory Data collection: open-ended interviews with added specific questions regarding their interaction with medical personnel. Interviews were audio recorded and transcribed verbatim. Bias/reflexivity: Afrikaans interviews translated in English and translated back to Afrikaans by a different translator to ensure accuracy. Reflexivity not mentioned. Ethical considerations: No mention of Ethical approval obtained. There is evidence of resources to support participants in case of emotional distress. One patient referred for psychological counselling following the interview.	Data analysis: Constructionist grounded theory approach. Steps of coding described. Clear statement of findings: Three themes are explored: how participants understood and experienced pregnancy and pregnancy loss, participants’ emotional needs and the role of medical personnel in fulfilling those needs. Discussion of findings: Each theme is discussed and explored reporting participants own words and against available literature. -Emotional impact of pregnancy and pregnancy loss: Difference between wanted and unwanted pregnancy: Wanted pregnancy: motherhood as part of identity, loss associated with sense of ‘being defective’, guilt and failure reported in the context of couple. Unwanted pregnancy: pregnancy as a joyless event sometimes related to abusive/unhappy relationship, loss accepted with relief but also shame and regret, taboo of not being happy about pregnancy. Immediate needs from medical personnel: validation of feelings, avoid assumptions, feeling disempowered, information as a tool for empowerment, need for compassion. Women’s Long term: mourning the loss, creating memories, instilling hope, need for connection, search for meaning.	Relationship with existing knowledge: findings concur with those of previous studies regarding the need for clinicians to provide sensitive, compassionate without making assumptions. Applicability to different population: participants not representative of a specific community or of women in general. Implications for further research: Similar study may be conducted on other communities of women. Limitations: not all participants had a late miscarriage.
Cullen, S., Coughlan, B., Casey, B., Power, S., & Brosnan, M. Exploring parents’ experiences of care in an Irish hospital following second-trimester miscarriage.  2017 Ireland	Sample size: 14 parents - 9 mothers and 5 fathers. Recruitment strategy: Purposive sampling. Bereavement midwife contacted families and obtained consent to provide information to researcher. Researcher obtained consent form prior to interview. Participants information: participants demographic information reported: age range for women, gestational age, obstetric history such as first pregnancy, previous miscarriage, one or more children.	Aim: explore parents’ experience of compassionate care following second trimester miscarriage. Rationale: inform the development of bereavement care services for families who experience a second trimester miscarriage. Relevance: expand knowledge of experience of second trimester miscarriage.	Method: Qualitative Design: Ethnography Data collection: Semi-structured interviews audio recorded and transcribed verbatim. Bias/Reflexivity: There is mention of ethical values of research process. No mention of reflexivity practices. Ethical considerations: Ethical approval obtained from both Hospital and University committee. There is evidence of protocol to support participants in case of emotional distress.	Data analysis: Thematic network to extract basic themes, organising themes and global themes. Focus: ‘relational and social experiences of miscarriage’ Clear statement of findings: One organising theme ‘compassionate care’ drawn of the basic themes of ‘empathy’ and ‘sensitivity’ Discussion of findings: Each theme is discussed reporting participants own words and against available literature. -Empathy or its lack impacts positively or negatively on the overall experience of miscarriage. -Sensitivity: professionals aware of loss, care of the baby following delivery, terminology such as ‘abortion pill’ may be upsetting.	Relationship with existing knowledge: findings concur with those of previous studies in regards of the importance of compassionate care particularly when caring for the bereaved. Empathy and sensitivity from staff significantly impact parents’ experience. Applicability to different population: study conducted in one hospital in Ireland. Implications for further research: suggested further research on: -barriers to providing compassionate care for bereaved parents and how to overcome them. -health professionals’ training needs to providing care to bereaved parents. Limitations: study conducted in one hospital in Ireland. Researcher experience as influencing factor in analysis – reflexivity practices not mentioned.
Smith, L. K., Dickens, J., Bender Atik, R., Bevan, C., Fisher, J., & Hinton, L. Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study.  2020 UK	Sample size: 38 parents – 18 parents’ pairs and 10 mothers. One further parent was interviewed but lost on follow up. Recruitment strategy: Maximum variation Purposive sample. Participants recruited through parent support associations and clinicians involved in the study. Information regarding the study was given to those interested in participating and consent was obtained before interview, before analysis and before publication. Participants information: participants demographic information not reported.	Aim: explore parents’ experience of healthcare following loss of a baby between 20+0 and 23+6 weeks of gestation. Rationale: identify ways to improve healthcare provision. Relevance: expand knowledge of parents’ experience of loss of a baby at the limit between definitions of ‘miscarriage’, ‘stillbirth’ and ‘neonatal death’.	Method: Qualitative Design: Thematic analysis Data collection: Semi-structured narrative interviews audio/video recorded and transcribed verbatim. Interviews lasted between 39 minutes and 2 hours and 45 minutes. Parents were given the chance to review the transcripts. Transcripts were anonymised and analysed using NVivoV.9. Bias/Reflexivity: Reflexivity practices and peer debriefing mentioned. Ethical considerations: Ethical approval obtained. Involvement of parents, clinicians and parents’ advocacy groups to overlook design and interpretation of findings.	Data analysis: Modified grounded theory approach. Clear statement of findings: Overarching theme: terminology used by health professionals has significant impact on parents’ experience. Key themes identified: Preparedness for the birth experience, seeing the baby and making memories, longer-term wellbeing, validating loss in absence of legal documentation. Discussion of findings: Each theme is discussed reporting participants own words. Terminology: the term ‘miscarriage’ does not align with parents’ experience. Labour and birth: the use of the term ‘miscarriage’ does not associate with experience of labour and birth resulting in unexpected and traumatic experience. Seeing the baby: term ‘miscarriage’ did not prepare parents to meet/hold baby. Memory-making: important step in validating existence of baby. Lack of formal documentation perceived as denial of experience. Post-natal experience: managing a ‘cruel body’. Longer-term emotional experiences: using the term ‘losing a baby’ rather than having a ‘miscarriage’ helps in processing loss and in sharing experience with family and friends- reducing sense of isolation.	Relationship with existing knowledge: discussed in interpretation of findings. Findings concur with those of previous studies in regards of: language as cause of enhanced suffering, importance of memory making to validate the identity of lost child, terminology may increase sense of isolation. Applicability to different population: not mentioned. Implications for further research: not mentioned. Limitations: Parents who choose to participate in the study may have been more likely to choose to use term ‘baby’ and ‘parent’, while other eligible participants who did not participate may refer to their experience as a pregnancy loss or miscarriage.
Johnson, O. P., & Langford, R. W. A randomized trial of a bereavement intervention for pregnancy loss.  2015 USA	Sample size: 40 women who experienced complete miscarriage in first or second trimester. 62.5% of participants (25) had miscarriage between 14–19 weeks. Recruitment strategy: Inclusion criteria defined. Participants’ contact initiated in emergency department, consent obtained and women re-contacted a week before a scheduled return clinic visit. Women enrolled completed detailed informed consent. Participants were randomly assigned to treatment (bereavement intervention) or control group (usual standard care). Participants information: participants completed demographic questionnaire including information such as: age, race, marital status, education, income, gravidity, parity, prenatal visit frequency and pregnancy loss. Ethical considerations: Ethical approval obtained from both Hospital and University committee.	Aim: examine the effect of a secondary bereavement intervention on grieving women who experienced a miscarriage between 12–20 weeks of gestation. Rationale: identify ways to improve healthcare provision. Relevance: reducing effect of complicated grief/despair following pregnancy loss.	Method: Quantitative Design: Experimental, posttest only, control group. Intervention: Treatment group received: -1 hour bereavement intervention focused on emotional care while in the emergency department -15 minutes phone call 1 week following loss Control group received: -routine care focused on physical stability and pain management. Measures: Perinatal Grief Scale (PGS) providing results on three subscales: active grief, difficulty coping and despair. Demographic questionnaire. Bias: n/a Confounding factors: not mentioned. Follow up: completed 2 weeks post-loss.	Data analysis: Chi-square and t test were used to check the differences between treatment and control group. MANOVA was used to examine the differences between the 2 groups and the 3 PGS subscales. Bonferroni adjustment was applied to the alpha value. Assumption for MANOVA were checked with no evidence of violation. Results: women in both groups displayed moderate levels of overall grief. Treatment group displayed significantly lower levels of despair in comparison to control group. No significant difference found between the two groups in relation to active grief and difficulty coping.	Relationship with existing knowledge: Findings concur with those of previous studies in regards of: high level of active grieving for both groups in the period immediately following loss, bereavement intervention lower grief and despair. Applicability to different population: not applicable as small sample and majority of participants is Hispanic, with no health insurance. Implications for further research: not mentioned. Limitations: Small sample non generalizable. Follow-up after loss only 2 weeks which does not allow to determine the long term effect of the intervention.

Table 7. Descripition of participants’ characteristics.

Participants’ demographic characteristics	Cullen, S. et al. Parents’ experiences of clinical care during second trimester miscarriage.	Cullen, S. et al. Exploring parents’ experiences of care in an Irish hospital following second-trimester miscarriage.	Mulvihill, A., & Walsh, T. Pregnancy loss in rural Ireland: An experience of disenfranchised grief.	Corbet-Owen, C., & Kruger,L.-M.The health system and emotional care: Validating the many meanings of spontaneous pregnancy loss.	Smith, L. K., et al. Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study.	Johnson, O. P., & Langford, R. W.A randomised trial of a bereavement intervention for pregnancy loss.
Number of participants	14 4 women alone 5 couples		8	8	38 18 women alone 10 couples	40
Gender	9 women 5 men (who participated with their partner)		8 Women	8 women	28 women 10 men (who participated with their partner)	40 Women
Age at time of loss	30–42 years		30–42 years	18–30 years	Not reported	18–42 years
Marital status	Not reported		8 Married	5 Married 2 Separated 1 Widowed	Not reported	15 Single 11 Living together 7 Married 7 Separated/Divorced
Ethnicity	9 Irish 2 Asian		Not reported	4 White South African 4 South African persons of color	Not reported	21 Hispanic/Latino 9 African American 7 White 3 Other
Religion	Not reported		Not reported	6 religious 2 not religious	Not reported
Gestational age at time of loss	15–19 weeks		10–19 weeks 4 participants between 14–19 weeks	5–40 weeks 6 participants between 16–22 weeks	20–23 + 6 weeks	8–20 weeks 25 (62.5%) suffered a loss between 14 and 19 weeks
Time since loss	6–24 months		10–14 months	Not reported	6 weeks − 25 years
Mother’s obstetric history
First pregancy	3		1	0	Not reported	6
Previous loss	5		4	4	Not reported	Not reported
One or more living children	5		6	4	Not reported	34

Figure 2. Thematic analysis as described by Braun and Clarke (2022).

Figure 3. Concept map of emergent themes.

Figure 4. Concept map of emergent themes.

Human Fertilisation and Embryology Act. (1990).

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Braun, V., & Clarke, V. (2022). Thematic analysis: A practical guide. SAGE.

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