Further Reading for Health Professionals - Stillbirth and Newborn Death

1. Bhat, A., & Byatt, N. (2016). Infertility and Perinatal Loss: When the Bough Breaks. Current Psychiatry Reports, 18(3), 31. doi: 10.1007/s11920-016-0663-8

Department of Psychiatry, University of Washington, Seattle, WA, USA

Infertility and perinatal loss are common, and associated with lower quality of life, marital discord, complicated grief, major depressive disorder, anxiety disorders, and post-traumatic stress disorder. Young women, who lack social supports, have experienced recurrent pregnancy loss or a history of trauma and / or preexisting psychiatric illness are at a higher risk of experiencing psychiatric illnesses or symptoms after a perinatal loss or during infertility. It is especially important to detect, assess, and treat depression, anxiety, or other psychiatric symptoms because infertility or perinatal loss may be caused or perpetuated by such symptoms. Screening, psychoeducation, provision of resources and referrals, and an opportunity to discuss their loss and plan for future pregnancies can facilitate addressing mental health concerns that arise. Women at risk of or who are currently experiencing psychiatric symptoms should receive a comprehensive treatment plan that includes the following: (1) proactive clinical monitoring, (2) evidence-based approaches to psychotherapy, and (3) discussion of risks, benefits, and alternatives of medication treatment during preconception and pregnancy.

2. Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E., Downe, S., ... & Siassakos, D. (2016). From Grief, Guilt Pain and Stigma to Hope and Pride–A Systematic Review and Meta-analysis of Mixed-method Research of the Psychosocial Impact of Stillbirth. BMC Pregnancy and Childbirth, 16(1), 1. doi: 10.1186/s12884-016-0800-8 [full text]

NIHR Clinical Lecturer in Obstetrics and Gynaecology, University of Bristol, School of Social & Community Medicine, Obstetrics and Gynaecology, Southmead Hospital, UK

Background Despite improvements in maternity healthcare services over the last few decades, more than 2.7 million babies worldwide are stillborn each year. The global health agenda is silent about stillbirth, perhaps, in part, because its wider impact has not been systematically analysed or understood before now across the world. Our study aimed to systematically review, evaluate and summarise the current evidence regarding the psychosocial impact of stillbirth to parents and their families, with the aim of improving guidance in bereavement care worldwide. Methods Systematic review and meta-summary (quantitative aggregation of qualitative findings) of quantitative, qualitative, and mixed-methods studies. All languages and countries were included. Results Two thousand, six hundred and nineteen abstracts were identified; 144 studies were included. Frequency effect sizes (FES %) were calculated for each theme, as a measure of their prevalence in the literature. Themes ranged from negative psychological symptoms post bereavement (77 · 1) and in subsequent pregnancies (27 · 1), to disenfranchised grief (31 · 2), and incongruent grief (28 · 5), There was also impact on siblings (23 · 6) and on the wider family (2 · 8). They included mixed-feelings about decisions made when the baby died (12 · 5), avoidance of memories (13 · 2), anxiety over other children (7 · 6), chronic pain and fatigue (6 · 9), and a different approach to the use of healthcare services (6 · 9). Some themes were particularly prominent in studies of fathers; grief suppression (avoidance)(18 · 1), employment difficulties, financial debt (5 · 6), and increased substance use (4 · 2). Others found in studies specific to mothers included altered body image (3 · 5) and impact on quality of life (2 · 1). Counter-intuitively, Some themes had mixed connotations. These included parental pride in the baby (5 · 6), motivation for engagement in healthcare improvement (4 · 2) and changed approaches to life and death, self-esteem, and own identity (25 · 7). In studies from low/middle income countries, stigmatisation (13 · 2) and pressure to prioritise or delay conception (9) were especially prevalent. Conclusion Experiencing the birth of a stillborn child is a life-changing event. The focus of the consequences may vary with parent gender and country. Stillbirth can have devastating psychological, physical and social costs, with ongoing effects on interpersonal relationships and subsequently born children. However, parents who experience the tragedy of stillbirth can develop resilience and new life-skills and capacities. Future research should focus on developing interventions that may reduce the psychosocial cost of stillbirth.

3. Homer, C. S. E., Malata, A., & ten Hoope-Bender, P. (2016). Supporting Women, Families, and Care Providers after Stillbirths. Lancet, 387(10018), 516–517. doi: 10.1016/S0140-6736(15)01278-7

Centre for Midwifery, Child and Family Health, University of Technology Sydney, NSW, Australia

Extract: Stillbirths are responsible for 2·6 million deaths per year. Each stillbirth is accompanied by great sadness and often distress, not only for the woman, father, and families, but also for the health professionals, especially midwives, who attend them. Midwives are particularly affected because they are usually the ones who attend the births and provide social and emotional support to the family, before and after the birth. The Lancet Series on Ending preventable stillbirths highlights both the actions that can reduce the risk of intrapartum stillbirths, including skilled attendance at birth and facility delivery, and also the importance of bereavement care…

4. Johnson, J. E., Price, A. B., Kao, J. C., Fernandes, K., Stout, R., Gobin, R. L., & Zlotnick, C. (2016). Interpersonal Psychotherapy (IPT) for Major Depression following Perinatal Loss: A Pilot Randomized Controlled Trial. Archives of Women’s Mental Health. doi: 10.1007/s00737-016-0625-5

College of Human Medicine, Michigan State University, Flint, MI, USA

This randomized controlled pilot trial examined the feasibility, acceptability, and preliminary efficacy of an adapted interpersonal psychotherapy (IPT) for major depressive disorder (MDD) following perinatal loss (miscarriage, stillbirth, or early neonatal death). Fifty women who experienced a perinatal loss within the past 18 months, whose current depressive episode onset occurred during or after the loss, were randomized to the group IPT adapted for perinatal loss (the Group IPT for Major Depression Following Perinatal Loss manual developed for this study is available at no cost by contacting either of the first two authors) or to the group Coping with Depression (CWD), a cognitive behavioral treatment which did not focus on perinatal loss nor social support. Assessments occurred at baseline, treatment weeks 4 and 8, post-treatment, and 3 and 6 months after the end of treatment. IPT was feasible and acceptable in this population. Although some participants were initially hesitant to discuss their losses in a group (as occurred in IPT but not CWD), end of treatment satisfaction scores were significantly (p = 0.001) higher in IPT than in CWD. Confidence intervals around between-groups effect sizes favored IPT for reductions in depressive symptoms during treatment as well as for improvement in mode-specific targets (social support, grief symptoms) and recovery from a post-traumatic stress disorder over follow-up. This group IPT treatment adapted for MDD after perinatal loss is feasible, acceptable, and possibly efficacious.

5. Lisy, K., Peters, M. D. J., Riitano, D., Jordan, Z., & Aromataris, E. (2016). Provision of Meaningful Care at Diagnosis, Birth, and after Stillbirth: A Qualitative Synthesis of Parents’ Experiences. Birth. doi: 10.1111/birt.12217

Joanna Briggs Institute, Faculty of Health Science, The University of Adelaide, South Australia

BACKGROUND: The care provided to parents experiencing stillbirth can have significant and lasting impacts on their immediate and long-term psychological well being. The aim of this qualitative synthesis was to investigate parents’ experiences of care received during and after stillbirth. METHODS: Qualitative findings extracted from 20 included studies were pooled using a meta-aggregative approach. RESULTS: Four meta-syntheses encompassing parents’ experiences of care at diagnosis of stillbirth, induction and birth, immediately postbirth and onwards, revealed care strategies that parents appreciated and found helpful, and also actions and behaviors that were distressing. Helpful strategies included a warm and sensitive communication style, provision of clear and understandable information, shared decision making, and respect for individual needs and preferences. Parents appreciated guidance from health care professionals about seeing and holding, including being prepared for their baby’s possible appearance, information on how to spend time with their baby, and collection of memorabilia. After stillbirth, offers of follow-up care, including referrals for professional support, were appreciated. CONCLUSIONS: Care received during and after stillbirth may have lasting impacts on parents’ future well being. Health care professionals may aid in improving parents’ well being after stillbirth by providing care that is cognizant of parents’ emotional states. Care strategies arising from the findings of this review are suggested.

6. Livingston , Jennifer Anne (2015). Exploring Harm: Parents Making Informed Decisions about Autopsy after a Perinatal Death. (PhD Thesis, University of Melbourne, Australia).

Changes were made to informed consent procedures at an Australian tertiary women’s hospital to remedy local and worldwide evidence that details of planned autopsies of babies had been commonly and deliberately kept back from bereaved parents. The main omission was the retention of organs and tissues from the autopsy by the hospital. However, hospital professionals had ongoing concerns that discussing autopsy and making decisions about it would cause additional harm to grief-stricken parents. Recently bereaved parents experiencing perinatal death including neonatal death, stillbirth, late miscarriage or mid-trimester termination of pregnancy for foetal anomaly were interviewed to determine whether their autopsy discussion experience and making decisions about perinatal autopsy caused them harm. Hypotheses about possible harms from involvement in the autopsy discussion and decision-making about autopsy were generated from the literature and these were tested against the parents’ actual experiences and concerns elicited in the in-depth interview. I have shown that the efforts to correct past failings have improved informed consent to perinatal autopsy. Parents understood their involvement in perinatal autopsy consent to be one of the many new and usually unexpected responsibilities arising from a perinatal death. From the perspective of parents, the autopsy discussion and decision experience caused no harm to them over and above that associated with a perinatal death. I found parents keen to discuss their organ and tissue preferences with me and discovered that doctors had not discussed organ and tissue retention with parents to their satisfaction despite the importance of this aspect to the revised autopsy consent discussion. Parents’ experience of an improved version of informed consent to autopsy caused them to question the way they provided “informed consent” in other contexts associated with the perinatal death. Parents considered these other decisions more important for them than the autopsy decision. Contrary to the autopsy consent experience, parents found both inevitable and preventable harms from perinatal death and hospital services associated with supporting the perinatal death. These harms would be mitigated with improved processes surrounding informed consent more generally and additional to the autopsy discussion. These findings are important. I have shown that parents expected and wanted the responsibility for making decisions about autopsy. Parents see autopsy as an important option in finding the cause of death of their baby; this is when there is doubt about the cause of death and to validate a decision to terminate the pregnancy mid-trimester. Autopsy is accepted as a means to an end and not a source of harm despite its intrusive nature. I have demonstrated that the central reason for the improved autopsy discussion – parent knowledge of organ and tissue retention – remains undiscussed in the detail required by parents. I found that parents’ views about tissue and organs varied; they were different from current legal and medical views about belongingness. This conundrum remains unresolved. I recommend further exploration of doctor’s reasons for not discussing organ and tissue retention. It is fundamental to understanding the reasons for this important impasse.

7. Martin, C. J. H., Robb, Y., & Forrest, E. (2016). An Exploratory Qualitative Analysis of Student Midwives Views of Teaching Methods that could Build their Confidence to Deliver Perinatal Bereavement Care. Nurse Education Today, 39, 99–103. doi: 10.1016/j.nedt.2015.12.023

School of Nursing, Midwifery and Social Care, Edinburgh Napier University, Scotland, UK

BACKGROUND: Equipping student midwives with confidence to deliver bereavement care to childbearing women is a challenge for midwifery lecturers. OBJECTIVE: To explore qualitative data provided by student midwives who evaluated the workbook Bereavement care for childbearing women and their families (Hollins Martin & Forrest, 2013) to explore their views of potential teaching strategies that could build their confidence to deliver real bereavement care. METHOD: An exploratory qualitative thematic analysis was used to provide, analyse and report themes identified within data collected in a prior study. PARTICIPANTS: Participants were student midwives (n=179) in their second/third year of a midwifery degree program at 1 of 3 universities in the UK were included in the study. DATA COLLECTION/ANALYSIS: Data to evaluate effectiveness of the bereavement workbook as a teaching method was collected using a survey instrument. It was the comments written under questions by participants that were analysed in the present study. FINDINGS: Three themes emerged: (1) increasing classroom interaction, (2) the importance of reflecting on emotions, and (3) need for experience. DISCUSSION: Although this study has addressed delivery of education that relates to midwives, the findings are cross transferable to other healthcare educators, practitioners, and students. Several solutions are proposed that could potentially build student confidence to deliver bereavement care: lecturers should (1) encourage group discussion in the classroom to help build student confidence to emotionally cope during real bereavement events; (2) ensure students gain exposure by encouraging qualified midwives to include them in real bereavement events early on in their training, and (3) develop packages of perinatal bereavement scenarios for simulation and rehearsal in the clinical skills laboratory. Post-implementation, it is recommended that these teaching strategies be evaluated.

8. O’Connell, O., Meaney, S., & O’Donoghue, K. (2016). Caring for Parents at the Time of Stillbirth: How can we do Better? Women and Birth. doi: 10.1016/j.wombi.2016.01.003

Department of Obstetrics and Gynaecology, Cork University Maternity Hospital, Wilton, Cork, Ireland

BACKGROUND: Many bereavement practices have become standard within maternity hospitals however little published evidence is available to confirm their benefit. We wanted to establish which aspects of care are valued, which could be improved and which, if any, cause distress. METHODS: This study aimed to survey parents who experienced stillbirth in a tertiary referral centre. There were seven question areas including receiving bad news, involvement of the multidisciplinary team, facilitation to grieve and have time with baby, autopsy communication process, post-discharge support and the importance parents placed on aspects of care. Mothers were contacted months following stillbirth to obtain verbal consent, before surveys were posted to both parents. Data were analysed using IBM SPSS Statistics version 22.0. FINDINGS: 70% (n=21) of mothers and 51% (n=15) of fathers responded. Responses between partners tended to agree. Predominantly positive replies to the survey suggested that our priorities in the provision of care were relevant but themes of dissatisfaction were identified regarding communication, written information, post-mortem information and post discharge follow-up. The overwhelming importance of caregivers’ interactions with the parents was notable in terms of the extent to which the parents recalled and wrote in detail about these encounters. DISCUSSION: Parents place a great deal of importance on their interactions with caregivers. Staff education and training needs to reflect this to ensure that professionals relate unambiguously and knowledgeably while focusing on the quality of the connection so that care provided will be experienced as sensitive, empathic and attuned to each individual parent.

9. Peters, M. D. J., Lisy, K., Riitano, D., Jordan, Z., & Aromataris, E. (2016). Providing Meaningful Care for Families Experiencing Stillbirth: A Meta-synthesis of Qualitative Evidence. Journal of Perinatology, 36(1), 3–9. doi: 10.1038/jp.2015.97

The Joanna Briggs Institute, Faculty of Health Science, The University of Adelaide, South Australia

OBJECTIVE: The objective of this study was to explore the meaningfulness of non-pharmacological care experienced by families throughout the experience of stillbirth from diagnosis onwards. STUDY DESIGN: A comprehensive systematic review was conducted. Multiple sources were searched for relevant studies including gray literature. Studies were included if they reported the experiences of families with the care they received throughout the experience of stillbirth, from diagnosis onwards. Studies were assessed for methodological quality prior to inclusion. Qualitative findings were extracted from included studies and pooled using a meta-aggregative approach. This paper reports the results of one meta-synthesis from the systematic review. RESULTS: Ten qualitative studies of moderate to high quality informed this meta-synthesis. The meta-aggregative synthesis included 69 findings that informed the development of 10 categories and one final, synthesized finding. Emerging themes that underpinned the meaningfulness of care provided to parents experiencing stillbirth included: information provision, the need for emotional support and appropriate maternity ward environments and systems. CONCLUSION: The results of this meta-synthesis revealed the elements of care that were experienced as meaningful from the perspective of parents who had experienced stillbirth. Exploration of these elements has provided important detail to underpin a growing understanding of how parents experience care and what may help or hinder parents’ experience of distress, anxiety and grief throughout the experience of stillbirth.

10. Ratislavová, K., Beran, J., & Lorenzová, E. (Available online 17 February 2016). Decision-making of Czech Mothers about Contact with their Baby after Perinatal Loss. Kontakt. doi: 10.1016/j.kontakt.2016.02.003

University of West Bohemia in Pilsen, Faculty of Health Care Studies, Department of Nursing and Midwifery, Pilsen, Czech Republic

Introduction The objective is to describe the experience of Czech mothers in terms of decision-making about visual and physical contact with a baby after perinatal loss, and also to explore the effect of this experience on the intensity of the mothersʼ grief after perinatal loss. Methods A mixed method design using qualitative data from 18 in-depth interviews was used in the Czech Republic, as well as mixed qualitative and quantitative data from an internet based questionnaire. A total of 100 questionnaires were analyzed using “Interventions after Perinatal Loss” and the Czech version of “the Perinatal Grief Scale”. Results The decision making of women after perinatal loss over contact with their deceased baby is influenced by internal factors (the need of a woman to get to know her child, concerns and fear of contact) and external factors (emotional support for the woman, professional information and interventions of the midwife or doctor). Internal factors are often conflicting and the social environment has the decisive say. The research has proven that a mother’s independent decision about contact with a baby after perinatal loss has significant impact on the intensity of her grief. The grief of mothers who decided independently and who were sure about their decision was statistically significantly less intense than in mothers for whom the decision had been made by medical staff. Conclusion The results of our research reflect the professional uncertainty of Czech midwives taking care of mothers after perinatal loss. This is demonstrated in a majority of cases by a paternalistic approach to communication.

11. Sereshti, M., Nahidi, F., Simbar, M., Ahmadi, F., Bakhtiari, M., & Zayeri, F. (2016). Mothers’ Perception of Quality of Services from Health Centers after Perinatal Loss. Electronic Physician, 8(2), 2006–2017. doi: 10.19082/2006 [full text]

Department of Midwifery & Reproductive Health, School of Nursing and Midwifery, International Branch, Shahid Beheshti University of Medical Sciences, Tehran, Iran

INTRODUCTION: Perinatal loss is one of the most stressful life events that parents and caregivers experience. Providing an empathetic, caring environment to support mothers who experience perinatal loss is necessary. The aim of this study was to assess mothers’ perception of the quality of services received from health centers after perinatal loss. METHODS: This study was conducted in 2014-2015 using qualitative content analysis. Participants in the study were 40 women with a history of miscarriage, stillbirth, or neonatal death who live in Tehran and Shahrekord, Iran. Data were collected from the participants through semi-structured, in-depth interviews, and they were analyzed using qualitative content analysis. RESULTS: One theme and six main categories were developed, and they indicated the mothers’ experiences and understandings of the quality of service received after perinatal loss. The major theme was ‘dissatisfaction with the quality of care received.’ The main categories included: 1) effective communication, 2) expecting responsiveness, 3) expecting to respect the patient’s dignity, 4) expecting better care, 5) tension of medical expenses, and 6) insufficient facilities. CONCLUSION: The findings of this study highlighted the weaknesses, inadequacies, strengths, and opportunities in providing health services. They can help reproductive health policy-makers reduce the pain and suffering of the affected families with appropriate measures.

12. Basile, M. L., & Thorsteinsson, E. B. (2015). Parents’ Evaluation of Support in Australian Hospitals following Stillbirth. PeerJ, 3, e1049. doi: 10.7717/peerj.1049 [full text]

School of Behavioural, Cognitive and Social Sciences, University of New England, Armidale, NSW , Australia

The present study evaluated the level of support and satisfaction among parents of stillborn babies in Australian hospitals. One-hundred and eighty-nine mothers and fathers completed an online survey designed by the researcher based on the guidelines designed by the Perinatal Society of Australia and New Zealand. Support was inconsistent with guidelines implemented on average only 55% of the time. Areas of support regarding creating memories, birth options and autopsy were most problematic. A significant positive correlation was found between support and satisfaction and there is indication that there has been some increase in support and satisfaction over time. There has been a significant increase in both support and satisfaction since the release of the guidelines in 2009. Creating memories was regarded by parents as the most influential to their grief. It is recommended that health professionals review guidelines and seek feedback from parents as to how they can improve the support they provide.

13. Cortezzo, D. E., Sanders, M. R., Brownell, E. A., & Moss, K. (2015). End-of-life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents. American Journal of Perinatology, 32(8), 713–724. doi: 10.1055/s-0034-1395475

Department of Anesthesia, Division of Pain and Palliative Medicine, Cincinnati Children’s Hospital Medical Center, Ohio, USA

OBJECTIVE: The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team. STUDY DESIGN: This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n = 14), advanced practitioners (n = 40), and nurses (n = 184) at Connecticut Children’s Medical Center’s neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n = 28). RESULTS: The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses include modalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up. CONCLUSION: End-of-life experiences in the NICU were perceived as variable and end-of-life practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care team could help. Families desire memory making, follow-up, and bereavement support.

14. Ernst, L. M. (2015). A Pathologist׳S Perspective on the Perinatal Autopsy. Seminars in Perinatology, 39(1), 55–63. doi: 10.1053/j.semperi.2014.10.008

Department of Pathology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

The perinatal autopsy is an important tool in the investigation of fetal and neonatal death, and a complete understanding of its risks and benefits is necessary for providers of perinatal care. This review, from the perspective of a perinatal pathologist, reports the details of the autopsy procedure, its goals, its value to individual patients and the health care system in general, and its alternatives. Even with new emerging technologies, the conventional perinatal autopsy remains the gold standard for determining the cause of death and the final summary of all pathologic findings. Therefore, the information provided in this review can help providers properly convey information about perinatal autopsy to bereaved families.

15. Hennegan, J. M., Henderson, J., & Redshaw, M. (2015). Contact with the Baby following Stillbirth and Parental Mental Health and Well-Being: A Systematic Review. BMJ Open, 5(11), e008616. doi: 10.1136/bmjopen-2015-008616 [full text]

National Perinatal Epidemiology Unit (NPEU), University of Oxford, UK

OBJECTIVE: To collate and critically appraise extant evidence for the impact of contact with the stillborn infant on parental mental health, well-being and satisfaction.

DESIGN: Systematic review. DATA SOURCES: A structured systematic search was conducted in 13 databases, complemented by hand-searching. STUDY ELIGIBILITY CRITERIA: English language studies providing quantitative comparison of outcomes for parents who held their baby or engaged in other memory-making activities, such as having photos and handprints, compared to those who did not, were eligible for inclusion. OUTCOME MEASURES: Primary outcomes included clinically diagnosed mental health issues, standardised assessment of mental health issues or self-reported psychological distress. Secondary outcomes included poor health, relationship difficulties and satisfaction with the decision to have contact with the baby.

RESULTS: Two authors independently screened abstracts, selected potentially eligible studies, extracted data and evaluated the quality of included papers. 11 eligible studies, reported in 18 papers, were included. Studies were heterogeneous, precluding quantitative synthesis, thus a narrative synthesis is presented. Studies presented high risks of bias, particularly in regard to sample representativeness, and confounder identification and adjustment. Results were mixed concerning the impact of holding the stillborn baby on mental health and well-being. One study found no significant effects, and two studies reported no impact on depression. Conflicting effects were found for anxiety and post-traumatic stress. Other memory-making activities were not found to have a significant association with mental health or well-being outcomes. Across studies, mothers were satisfied with their decision to hold their baby or engage in other memory making. CONCLUSIONS: Evidence for the impact of holding the stillborn baby on mental health and well-being is sparse, and of poor quality. High-quality research guided by a priori hypotheses, with attention to potential confounders and moderating effects, is needed to provide more rigorous evidence to guide practitioners’ and parents’ decision-making for care following stillbirth.

16. Kingdon, C., O’Donnell, E., Givens, J., & Turner, M. (2015). The Role of Healthcare Professionals in Encouraging Parents to See and Hold their Stillborn Baby: A Meta-synthesis of Qualitative Studies. PloS one, 10(7), e0130059. [full text]

School of Health, University of Central Lancashire, Preston, Lancashire, UK

Background Globally, during 2013 there were three million recorded stillbirths. Where clinical guidelines exist some recommend that professionals do not encourage parental contact. The guidance is based on quantitative evidence that seeing and holding the baby is not beneficial for everyone, but has been challenged by bereaved parents’ organisations. We aim to inform future guideline development through a synthesis of qualitative studies reporting data relevant to the research question; how does the approach of healthcare professionals to seeing and holding the baby following stillbirth impact parents views and experiences? Methods/Findings Using a predetermined search strategy of PubMed and PsychINFO we identified robust qualitative studies reporting bereaved parental views and/or experiences relating to seeing and holding their stillborn baby (final search 24 February, 2014). Eligible studies were English language, reporting parental views, with gestational loss >20weeks. Quality was independently assessed by three authors using a validated tool. We used meta-ethnographic techniques to identify key themes and a line of argument synthesis. We included 12 papers, representing the views of 333 parents (156 mothers, 150 fathers, and 27 couples) from six countries. The final themes were: “[Still]birth: Nature of care is paramount”, “Real babies: Perfect beauties, monsters and spectres”, and “Opportunity of a lifetime lost.” Our line-of-argument synthesis highlights the contrast between all parents need to know their baby, with the time around birth being the only time memories can be made, and the variable ability that parents have to articulate their preferences at that time. Thus, we hypothesised that how health professionals approach contact between parents and their stillborn baby demands a degree of active management. An important limitation of this paper is all included studies originated from high income, westernised countries raising questions about the findings transferability to other cultural contexts. We do not offer new evidence to answer the question “Should parents see and hold their stillborn baby?”, instead our findings advance understanding of how professionals can support parents to make appropriate decisions in a novel, highly charged and dynamic situation. Conclusions Guidelines could be more specific in their recommendations regarding parental contact. The role of healthcare professionals in encouraging parents to see and hold their stillborn baby is paramount. Parental choice not to see their baby, apprehension, or uncertainty should be continuously revisited in the hours after birth as the opportunity for contact is fleeting and final.

17. Peters, M. D. J., Lisy, K., Riitano, D., Jordan, Z., & Aromataris, E. (2015). Caring for Families experiencing Stillbirth: Evidence-based Guidance for Maternity Care Providers. Women and Birth, 28(4), 272–278. doi: 10.1016/j.wombi.2015.07.003

The Joanna Briggs Institute, Faculty of Health Sciences, The University of Adelaide, South Australia

BACKGROUND: Evidence-based guidance is needed to inform care provided to mothers and families who experience stillbirth. This paper focuses upon how meaningful and culturally appropriate care can be provided to mothers and families from when they are informed that their baby will be stillborn to many years after the experience. Avoidable suffering may be occurring in the clinical setting. AIMS: To promote and inform meaningful and culturally appropriate evidence-informed practice amongst maternity care providers caring for mothers and families who experience stillbirth. METHODS: A comprehensive systematic review was conducted which primarily synthesised relevant qualitative research studies. An expert advisory group comprised of stillbirth researchers, clinicians, and parents who have experienced stillbirth provided guidance for the review and the development of implications for practice. FINDINGS: Grieving parents want staff to demonstrate sensitivity and empathy, validate their emotions, provide clear, information, and be aware that the timing of information may be distressing. Parents want support and guidance when making decisions about seeing and holding their baby. Sensitivity, respect, collaboration, and information are essential throughout the experience of stillbirth. Culturally appropriate care is important and may require staff to accommodate different cultural practices. CONCLUSION: The findings of the review and expert consensus inform the provision of meaningful and culturally appropriate care for mothers and families that have experienced stillbirth. Evidence informed implications for practice are provided to guide the actions, communication, and behaviours of maternity care providers.

18. Petro, S. J. (2015). Drawing Close to the Brokenhearted: Pastoral Responses to Parents Grieving Stillbirth. The Journal of Pastoral Care & Counseling: JPCC, 69(1), 13–18. doi: 10.1177/1542305015572961

Boston College School of Theology and Ministry, Boston, MA, USA

Despite its prevalence worldwide, stillbirth is poorly understood and rarely discussed. Accordingly, ministers and other pastoral caregivers are seldom prepared to counsel and console parents suffering from this type of infant loss and to effectively design, propose, and lead ministries within their faith communities for this grieving population. This article addresses the immediate pastoral needs of bereaved parents and proposes first and second order responses that ministers and faith communities can employ to compassionately and effectively care for parents suffering from the trauma of stillbirth.

19. Rogers, J., Spink, M., Magrill, A., Burgess, K., & Agius, M. (2015). Evaluation of a Specialised Counselling Service for Perinatal Bereavement. Psychiatria Danubina, 27, 482-485.

Medical Academic Unit, Broomfield Hospital, Court Road, Chelmsford, Essex, UK

OBJECTIVES: We aimed to evaluate the outcomes of Petals: a charitable organisation in Cambridgeshire. Petals provides counselling for women and couples who have suffered perinatal bereavement, or trauma during pregnancy or birth. This paper attempts to evaluate the effect of counseling interventions at this difficult time.

METHODS: Outcomes were recorded in 107 patients using the CORE (Clinical Outcomes in Routine Evaluation) system. CORE was developed to assess the effectiveness of psychological therapies. CORE-OM (CORE Outcome Measure) involves a questionnaire that assesses subjective well-being, symptoms/problems, function, and risk to self and others. The CORE-OM questionnaire was completed before and after the counselling sessions.

RESULTS: The CORE-OM scores were summated into a global representation of severity. Severity decreased in all patients. Symptoms of psychological pathology were also decreased in all cases.

CONCLUSION: Offering a free specialised counselling for parents suffering perinatal loss seems to be associated with an improvement in psychological outcomes. It is possible that it is more effective among a clinical population. However, we are uncertain of the natural history of the psychological problems this group of clients are experiencing. Having a control group would show how much of any natural improvement is due to the therapy; conversely, it is possible that without intervention these problems worsen with time, so a control group could actually amplify the effect.

20. Rosenbaum, J. L., Smith, J. R., Yan, Y., Abram, N., & Jeffe, D. B. (2015). Impact of a Neonatal-Bereavement-Support DVD on Parental Grief: A Randomized Controlled Trial. Death Studies, 39(1-5), 191–200. doi: 10.1080/07481187.2014.946628

Edward Mallinckrodt Department of Pediatrics , Washington University School of Medicine , St. Louis , MI, USA

This study tested the effect of a neonatal-bereavement-support DVD on parental grief after their baby’s death in a Neonatal Intensive Care Unit compared with standard bereavement care (controls). Following a neonatal death, the authors measured grief change from a 3- to 12-month follow-up using a mixed-effects model. Intent-to-treat analysis was not significant, but only 18 parents selectively watched the DVD. Thus, we subsequently compared DVD viewers with DVD nonviewers and controls. DVD viewers reported higher grief at 3-month interviews compared with DVD nonviewers and controls. Higher grief at 3 months was negatively correlated with social support and spiritual/religious beliefs. These findings have implications for neonatal-bereavement care.

21. Ryan, A., Bernhard, H., & Fahlberg, B. (2015). Best Practices for Perinatal Palliative Care. Nursing, 45(10), 14–15. doi: 10.1097/01.NURSE.0000471422.49754.9b

University of Wisconsin-Madison School of Nursing, USA

How nurses and other healthcare professionals care for families suffering a perinatal loss can have far-reaching consequences.

22. Sousou, J., & Smart, C. (2015). Care of the Childbearing Family with Intrauterine Fetal Demise. Nursing for Women’s Health, 19(3), 236–246. doi: 10.1111/1751-486X.12205

Rutgers, State University of New Jersey School of Nursing, Camden, NJ, USA

Intrauterine fetal demise (IUFD), or stillbirth, is the death of a fetus greater than 20 weeks gestation. Several factors contribute to risk for IUFD, although in many cases the exact etiology is unknown. Nurses are a vital part of the interdisciplinary health care team caring for families with IUFD, who require timely and sensitive care to enable an uncomplicated birth and grieving process.

23. Wilson, P. A., Boyle, F. M., & Ware, R. S. (2015). Holding a Stillborn Baby: The View from a Specialist Perinatal Bereavement Service. The Australian & New Zealand Journal of Obstetrics & Gynaecology, 55(4), 337–343. doi: 10.1111/ajo.12327

Mater Health Services, Mater Mothers’ Hospital, Brisbane, Queensland, Australia

BACKGROUND: Stillbirth is a profoundly distressing event. Little evidence exists to guide best practice bereavement care in the perinatal setting. AIMS: To document parents’ experiences and outcomes in relation to seeing and holding a stillborn baby at a hospital with a specialist perinatal bereavement service. MATERIALS AND METHODS: Prospective cohort study of 26 mothers and 11 fathers who experienced a stillbirth at the Mater Mothers’ Hospital, Brisbane from September 2007-December 2008. Mailed self-report questionnaires were completed at 6-8 weeks and 6 and 13 months postloss. Validated measures assessed regret regarding the decision to see and hold the baby, parental grief and mental health. RESULTS: Of 78 fetal deaths, 26 mothers and 11 fathers participated. Most (20 mothers; 9 fathers) chose to see and hold their stillborn infant. Little regret was reported, irrespective of the decision. For mothers, seeing and holding was associated with higher ‘active grief’ at 6-8 weeks (mean difference (MD) = 10.5; 95% CI = 3.3-17.8; P < 0.01), 6 months (MD = 8.0; 95% CI = 0.6-15.4; P = 0.03) and 13 months (MD = 9.9; 95% CI = 1.8-17.9; P = 0.01), but not with ‘not coping’ or ‘despair’, or mental health. Fathers reported poorer mental health but small numbers mean estimates are imprecise. CONCLUSIONS: More intense grief does not equate with poorer mental health for mothers who choose to see and hold a stillborn infant. Fathers’ experiences warrant further study. Supported decision-making is important for bereaved parents, and rigorous evaluation of bereavement care is essential.

24. Blood, C., & Cacciatore, J. (2014). Best Practice in Bereavement Photography after Perinatal Death: Qualitative Analysis with 104 Parents. BMC Psychology, 2(1), 15. doi: 10.1186/2050-7283-2-15 [full text]

School of Social Work, Arizona State University, Phoenix, AZ, USA

BACKGROUND: Postmortem memento photography has emerged in Western hospitals as part of compassionate bereavement care for parents facing perinatal death. Many parents endorse this psychosocial intervention, yet implementation varies greatly and little research on parents’ specific needs guides health care professionals. Parents are in crisis and vulnerable after the death of their child, thus best practice is crucial. This study contributes 104 parents’ experiences and opinions toward the understanding of best practice in perinatal bereavement photography. METHODS: Parents who experienced the perinatal death of their child were recruited from U.S.-based bereavement organizations and social media sites. Volunteers completed an anonymous internet survey with open- and closed-ended questions. Direct recommendations and pertinent statements regarding the process of postmortem photography were analyzed for thematic content in keeping with conventional content analysis. Recurrent themes and sub-themes were counted to identify response patterns. RESULTS: Of 93 parents with pictures, 92 endorsed them. Of 11 without pictures, nine wanted them. Parents made a variety of recommendations regarding appropriate psychosocial support, the consent process, obstacles to photography, logistics of photography, and material aspects of photographs themselves. Overall, parents wanted many pictures and much variety. Some wanted professional photography while others wanted support for taking their own pictures. Parents wanted guidance from staff who respected their particular needs. Many said decisions were difficult during their crisis. Parents who were initially resistant expressed current appreciation for pictures or expressed regret that they had not participated. Parents recommended that professionals strongly encourage parents to create memento photos despite parents’ initial reservations. Persistent cultural reasons against photography emerged in one case. Quotes by parents illuminate themes and enable respondents to speak directly to health care professionals. CONCLUSIONS: Parents overwhelmingly support postmortem bereavement photography when conducted sensitively, even if imperfectly executed. Providers significantly influence parents during their crises; mindful, patient-centered care with appropriate respect for difference is necessary. Providers must understand the importance of postmortem photographs to parents who have limited opportunity to capture memories of their child. Hospitals should provide education and support for this important psychosocial intervention.

25. Blood, C., & Cacciatore, J. (2014). Parental Grief and Memento Mori Photography: Narrative, Meaning, Culture, and Context. Death Studies, 38(1-5), 224–233. Doi: 10.1080/07481187.2013.788584

School of Social Work, Arizona State University, Phoenix, AZ, USA

Postmortem photography is a widespread practice in perinatal bereavement care, yet few studies have explored how it affects bereaved parents, or how it might be received by parents of older children. This study is an examination of the meaning, utility, and social context of postmortem photography in a sample of 181 bereaved parents. Data were subjected to both quantitative and qualitative analysis. Photographs were positively regarded by most parents after perinatal death and several parents of older children. Other parents rejected postmortem photography for aesthetic, personal, or cultural reasons. Brief recommendations are offered for healthcare providers.

26. Brierley-Jones, L., Crawley, R., Lomax, S., & Ayers, S. (2014). Stillbirth and Stigma: The Spoiling and Repair of Multiple Social Identities. Omega, 70(2), 143–168. doi: 10.2190/OM.70.2.a

University of Sunderland, UK

This study investigated mothers’ experiences surrounding stillbirth in the United Kingdom, their memory making and sharing opportunities, and the effect these opportunities had on them. Qualitative data were generated from free text responses to open-ended questions. Thematic content analysis revealed that “stigma” was experienced by most women and Goffman’s (1963) work on stigma was subsequently used as an analytical framework. Results suggest that stillbirth can spoil the identities of “patient,” “mother,” and “full citizen.” Stigma was reported as arising from interactions with professionals, family, friends, work colleagues, and even casual acquaintances. Stillbirth produces common learning experiences often requiring “identity work” (Murphy, 2012). Memory making and sharing may be important in this work and further research is needed. Stigma can reduce the memory sharing opportunities for women after stillbirth and this may explain some of the differential mental health effects of memory making after stillbirth that is documented in the literature.

27. Carroll, K. E., Lenne, B. S., McEgan, K., Opie, G., Amir, L. H., Bredemeyer, S., … Polverino, J. (2014). Breast Milk Donation after Neonatal Death in Australia: A Report. International Breastfeeding Journal, 9(1), 23. doi: 10.1186/s13006-014-0023-4 [full text]

Faculty of Arts and Social Sciences, University of Technology Sydney, NSW, Australia

Lactation and breast milk can hold great value and meaning for grieving mothers who have experienced a recent death of an infant. Donation to a human milk bank (HMB) as an alternative to discarding breast milk is one means of respecting the value of breast milk. There is little research, national policy discussion, or organizational representation in Australia on the subject of breast milk donation after infant death. On 29 November 2013 the Mercy Hospital for Women in Melbourne, Australia hosted Australia’s first National Stakeholder Meeting (NSM) on the topic of milk donation after neonatal death. The NSM drew together representatives from Australian HMBs, neonatal intensive care units (NICUs) currently using donor human milk, and Australia’s chief NICU parent support organization. The NSM was video-recorded and transcribed, and analyzed thematically by researchers. This article reports the seven dominant themes discussed by stakeholders during the NSM: the spectrum of women’s lactation and donation experiences after infant death; the roles of the HMB and NICU in meeting the needs of the bereaved donor; how bereaved mothers’ lactation autonomy may interface with a HMB’s donation guidelines; how milk donation may be discussed with bereaved mothers; the variation between four categories of milk donation after neonatal death; the impact of limited resources and few HMBs on providing donation programs for bereaved mothers in Australia. This article provides evidence from researchers and practitioners that can assist HMB staff in refining their bank’s policy on milk donation after infant death, and provides national policy makers with key considerations to support lactation, human milk banking, and bereavement services nation-wide.

28. Duffey, H. (2014). Water Immersion in Neonatal Bereavement Photography. Nursing for Women’s Health, 18(5), 429–433. doi: 10.1111/1751-486X.12152

Water immersion in neonatal bereavement photography is a new technique intended to enhance the quality of the photographs provided to families following their loss. Water immersion appears to be most helpful following a second trimester fetal demise. This technique can be used by nurses, professional photographers and others in addition to more traditional neonatal bereavement photography. It does not require special skills or equipment and can be implemented in virtually any perinatal setting. The enhanced quality of photographs produced with this method can potentially provide a source of comfort to grieving families.

29. Flenady, V., Boyle, F., Koopmans, L., Wilson, T., Stones, W., & Cacciatore, J. (2014). Meeting the Needs of Parents after a Stillbirth or Neonatal death. BJOG: An International Journal of Obstetrics and Gynaecology, 121 Suppl 4, 137–140. doi: 10.1111/1471-0528.13009 [full text]

Translating Research into Practice Centre, Mater Research Institute, Mater Health Services, University of Queensland, South Brisbane, Qld, Australia

The death of a child around the time of birth is one of the most profoundly distressing events any parent will experience. These deaths are not uncommon, but are often hidden, along with the grief of mothers, fathers and families. Social stigma and negative attitudes are inextricably linked to underreporting of babies’ deaths in low- and middle-income countries. A failure to recognise the value of these lost lives leads to disenfranchised grief and diminished preventive efforts to reduce stillbirth and neonatal deaths. Acknowledging these deaths to bring them ‘out of the shadows’17 and compassionate, respectful care for parents suffering perinatal loss, irrespective of country or resources, are critical to addressing the totality of the burden of this public health problem.

30. Huberty, J., Leiferman, J. A., Gold, K. J., Rowedder, L., Cacciatore, J., & McClain, D. B. (2014). Physical Activity and Depressive Symptoms after stillbirth: Informing Future Interventions. BMC Pregnancy and Childbirth, 14, 391. doi: 10.1186/s12884-014-0391-1 [full text]

Exercise and Wellness, Arizona State University, Phoenix, AZ, USA

BACKGROUND: In the United States, approximately one in 110 pregnancies end in stillbirth affecting more than 26,000 women annually. Women experiencing stillbirth have a threefold greater risk of developing depressive symptoms compared to women experiencing live birth. Depression contributes negatively to health outcomes for both mothers and babies subsequent to stillbirth. Physical activity may improve depression in these women, however, little is known about acceptable physical activity interventions for women after stillbirth. This is the purpose of this descriptive exploratory study. METHODS: Eligible women were between ages 19 and 45, and experienced stillbirth within one year of the study. An online survey was used to ask questions related to 1) pregnancy and family information (i.e., time since stillbirth, weight gain during pregnancy, number of other children) 2) physical activity participation, 3) depressive symptomatology, and 4) demographics. RESULTS: One hundred seventy-five women participated in the study (M age = 31.26 ± 5.52). Women reported participating in regular physical activity (at least 150 minutes of moderate activity weekly) before (60%) and during (47%) their pregnancy, as well as after their stillbirth (61%). Only 37% were currently meeting physical activity recommendations. Approximately 88% reported depression (i.e., score of >10 on depression scale). When asked how women cope with depression, anxiety, or grief, 38% said physical activity. Of those that reported using physical activity to cope after stillbirth, they did so to help with depression (58%), weight loss (55%), and better overall physical health (52%). To cope with stillbirth, women used walking (67%), followed by jogging (35%), and yoga (23%). Women who participated in physical activity after stillbirth reported significantly lower depressive symptoms (M = 15.10, SD = 5.32) compared to women who did not participate in physical activity (M = 18.06, SD = 5.57; t = -3.45, p = .001). CONCLUSIONS: Physical activity may serve as a unique opportunity to help women cope with the multiple mental sequelae after stillbirth. This study provides data to inform healthcare providers about the potential role of physical activity in bereavement and recovery for women who have experienced stillbirth. Additional research is necessary in this vulnerable population.

31. Lacasse, J. R., & Cacciatore, J. (2014). Prescribing of Psychiatric Medication to Bereaved Parents following Perinatal/Neonatal Death: An Observational Study. Death Studies, 38(6-10), 589–596. doi: 10.1080/07481187.2013.820229

College of Social Work , Florida State University , Tallahassee , FL, USA

To examine psychiatric prescribing in response to perinatal/neonatal death, we analyzed data from a cross-sectional survey of 235 bereaved parents participating in an online support community. Of the 88 respondents prescribed medication, antidepressants were most common (n = 70, 79.5%) followed by benzodiazepines/sleep aids (n = 18, 20.5%). Many prescriptions were written shortly after the death (32.2% within 48 hr, 43.7% within a week, and 74.7% within a month). Obstetrician/gynecologists wrote most prescriptions given shortly after loss. Most respondents prescribed antidepressants took them long-term. This sample is select, but these data raise disturbing questions about prescribing practices for grieving parents.

32. Mander, R. (2014). Who Listens to Parents and is Anything Done? The Practising Midwife, 17(7), 24–25.

The Listening to parents survey1, which took place in early 2014, sought the views of parents bereaved by stillbirth or early neonatal death. The findings showed the marked variation in care provided. The low response rate may call into question the authority of the findings Research into perinatal loss seems to be unlikely to be operationalised. More qualitative research may make such implementation more feasible, hopefully making optimal care more certain for grieving parents.

33. McSpedden, M. (2014). Perinatal Grief: Complicated or What? An Analysis of the Symptoms of Perinatal Grief in Two Samples of Bereaved Mothers in Australia. Masters Thesis, University of Sydney, Australia. [full text]

Background: Perinatal grief, which affects parents whose babies die during pregnancy or within a year after birth, has been shown to lead to severe morbidity and, in some cases, mortality. Despite the assertion that all these parents are susceptible to developing complicated grief because of the nature of their loss, there has been little evidence to support this. However, some variables which may predict the likelihood of these bereaved mothers having unremitting, intense grief have previously been identified, including: maternal age, education, marital status, occupational status, other losses and the presence of living children. Objective: The present studies assessed perinatal grief and the impact of these variables on the risk of developing complicated grief using self-reported data in two separate samples of perinatally bereaved mothers (N = 121) and (N = 146) up to five years after their loss. In Study 2 other psychopathological symptoms, including: depression, anxiety, stress and post-traumatic stress were also assessed. Results: Contrary to expectations, findings indicated that the proportion of these mothers who experienced complicated grief, 12.5% in Study 1 and 18% in Study 2, was similar to other populations of grievers. In both studies those variables that had been suggested as indicative of higher risk for developing psychopathology were not supported except for the absence/presence of other children. Conclusion: Perinatally bereaved mothers report clinically significant symptoms of complicated grief as well as other psychopathology such as depression, anxiety, stress and post-traumatic stress at levels similar to other populations of grievers. The symptomology of these mothers should be routinely monitored to assess need for referral for treatment when indicated. Limitations, such as the convenience samples of participants and strengths, such as, quantitative design of the study, are addressed and implications are outlined.

34. Miller, L. H., Lindley, L. C., Mixer, S. J., Fornehed, M. L., & Niederhauser, V. P. (2014). Developing a Perinatal Memory-making Program at a Children’s Hospital. MCN. The American Journal of Maternal Child Nursing, 39(2), 102–106. doi: 10.1097/NMC.0000000000000016

College of Nursing, University of Tennessee, Knoxville, Knoxville, TN, USA

Most pregnancies are a time of joy and anticipation, but unfortunately there are families who instead suffer one of life’s most difficult events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations is to assist them by creating memories of their child to help ease perinatal grief. This article describes the Precious Prints Project, a perinatal memory-making program designed to comfort families grieving the loss of a child. We discuss the development and implementation of this project, explore the literature, and show the strategies used to address the challenges encountered.

35. Nuzum, D., Meaney, S., & O’Donoghue, K. (2014). The Provision of Spiritual and Pastoral Care following Stillbirth in Ireland: A Mixed Methods Study. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2013-000533

Anu Research Centre, Department of Obstetrics and Gynaecology, University College Cork, Cork University Maternity Hospital, Cork, Ireland

BACKGROUND: The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spiritual and social needs of parents are attended to. This study reviewed how spiritual care is provided to bereaved parents following stillbirth in maternity units in Ireland and the impact of stillbirth on healthcare chaplains. METHODS: This was a mixed methods study using semistructured qualitative interviews with hospital chaplains in Irish maternity units. Quantitative data about the provision of services to bereaved parents were collated from the interviews. Qualitative data were analysed thematically to identify key themes. RESULTS: 20 chaplains from 17 units participated in the study (85% of Irish maternity units). 12 chaplains (60%) are formally accredited chaplains; only one has received specialist training in perinatal bereavement care. 11 chaplains (55%) provide follow-up bereavement care. Seven chaplains (35%) did not feel part of the multidisciplinary team. The main themes that emerged were the impact of stillbirth, suffering and the challenge to faith creating inner conflict and doubt. CONCLUSIONS: The provision of spiritual care following stillbirth in Ireland is diverse. Spiritual care in this specialised area by chaplains who are not professionally trained and accredited potentially impacts quality and depth of care. Chaplains experience considerable impact and challenge to personal faith and belief as they provide care. Recommendations are made for ongoing education and greater support for chaplains.

36. Ryninks, K., Roberts-Collins, C., McKenzie-McHarg, K., & Horsch, A. (2014). Mothers’ Experience of their Contact with their Stillborn Infant: An Interpretative Phenomenological Analysis. BMC Pregnancy and Childbirth, 14, 203. doi: 10.1186/1471-2393-14-203 [full text]

Department of Child and Adolescent Psychiatry, Research Unit, University Hospital Lausanne, Switzerland

BACKGROUND: Guidelines surrounding maternal contact with the stillborn infant have been contradictory over the past thirty years. Most studies have reported that seeing and holding the stillborn baby is associated with fewer anxiety and depressive symptoms among mothers of stillborn babies than not doing so. In contrast, others studies suggest that contact with the stillborn infant can lead to poorer maternal mental health outcomes. There is a lack of research focusing on the maternal experience of this contact. The present study aimed to investigate how mothers describe their experience of spending time with their stillborn baby and how they felt retrospectively about the decision they made to see and hold their baby or not. METHOD: In depth interviews were conducted with twenty-one mothers three months after stillbirth. All mothers had decided to see and the majority to hold their baby. Qualitative analysis of the interview data was performed using Interpretive Phenomenological Analysis. RESULTS: Six superordinate themes were identified: Characteristics of Contact, Physicality; Emotional Experience; Surreal Experience; Finality; and Decision. Having contact with their stillborn infant provided mothers with time to process what had happened, to build memories, and to ‘say goodbye’, often sharing the experience with partners and other family members. The majority of mothers felt satisfied with their decision to spend time with their stillborn baby. Several mothers talked about their fear of seeing a damaged or dead body. Some mothers experienced strong disbelief and dissociation during the contact. CONCLUSIONS: Results indicate that preparation before contact with the baby, professional support during the contact, and professional follow-up are crucial in order to prevent the development of maternal mental health problems. Fears of seeing a damaged or dead body should be sensitively explored and ways of coping discussed. Even in cases where mothers experienced intense distress during the contact with their stillborn baby, they still described that having had this contact was important and that they had taken the right decision. This indicates a need for giving parents an informed choice by engaging in discussions about the possible benefits and risks of seeing their stillborn baby.

37. Erlandsson, K., Warland, J., Cacciatore, J., & Rådestad, I. (2013). Seeing and Holding a Stillborn Baby: Mothers’ Feelings in Relation to How their Babies were Presented to them after Birth—Findings from an Online Questionnaire. Midwifery, 29(3), 246–250. doi: 10.1016/j.midw.2012.01.007

School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden

OBJECTIVE: to determine if the way caregivers offer opportunities to see and hold a stillborn baby impacts a mother’s feelings about the experience of seeing and holding her newborn. DESIGN AND SETTING: a web questionnaire hosted by the Swedish National Infant Foundation from March 2008 to April 2010. PARTICIPANTS: 840 eligible participants who had experienced a stillbirth after the 22nd gestational week from 1955 to 2010 and completed an online questionnaire about their experiences. METHODS: descriptive and inferential statistics. FINDINGS: when mothers were presented the baby as a normal part of birth without being asked if they wanted to see, they more often reported that the experience was comfortable compared to mothers who were asked if they wanted to see the baby 86% vs. 76% (p=<0.01). The incitation of fear in mothers was 70% vs. 80% (p=0.02) in favour of mothers who were not asked. Furthermore the mothers who were not asked more often stated that it felt natural and good when compared to those who said staff asked if the mother wanted to see, 73% vs. 61% (p=0.07) and (78%) vs. (69%) p=0.19, respectively. A trend was seen toward more mothers feeling natural, good, comfortable, and less frightened if the provider engaged in ‘assumptive bonding’, that is the baby is simply and naturally presented to the mother without asking her to choose. KEY CONCLUSIONS: mothers of stillborn babies felt more natural, good, comfortable and less frightened if the staff supported assumptive bonding by simply offering the baby to the mother. IMPLICATIONS FOR PRACTICE: care providers should approach caring for grieving mothers with tenderness and humility, assuming that they will wish to see and hold their stillborn baby.

38. Heazell, A. E. P., Leisher, S., Cregan, M., Flenady, V., Frøen, J. F., Gravensteen, I. K., … Erwich, J. J. H. M. (2013). Sharing Experiences to Improve Bereavement Support and Clinical Care After Stillbirth: Report of the 7th Annual Meeting of the International Stillbirth Alliance. Acta Obstetricia Et Gynecologica Scandinavica, 92(3), 352–361. doi: 10.1111/aogs.12042

Maternal and Fetal Health Research Centre, Manchester Academic Health Science Centre, University of Manchester, Manchester, UK

Stillbirth remains a global health challenge which is greatly affected by social and economic inequality, particularly the availability and quality of maternity care. The International Stillbirth Alliance (ISA) exists to raise awareness of stillbirth and to promote global collaboration in the prevention of stillbirth and provision of appropriate care for parents whose baby is stillborn. The focus of this ISA conference was to share experiences to improve bereavement support and clinical care. These issues, relevant throughout the globe, are not discrete but closely interrelated, with both similarities and differences depending on the specific country and cultural context. Counting stillbirths and understanding the causes of stillbirth are essential not only for providing optimal care and support to parents whose babies die, but also for reducing the future burden of stillbirth. This summary highlights novel work from obstetricians, midwives, psychologists, parents and peer support organizations that was presented at the ISA meeting. It covers topics including the bereavement process, peer support for parents, support and training for staff, evidence for clinical care, and the need for accurate data on stillbirths and perinatal audits. Representatives from the maternity services of the region presented their outcome data and shared their experiences of clinical and bereavement care. Data and developments in practice within stillbirth and bereavement care must be widely disseminated and acted upon by those responsible for maternity care provision, both to prevent stillbirths and to provide high-quality care when they do occur.

39. Koopmans, L., Wilson, T., Cacciatore, J., & Flenady, V. (2013). Support for Mothers, Fathers and Families after Perinatal Death. The Cochrane Database of Systematic Reviews, 6, CD000452. doi: 10.1002/14651858.CD000452.pub3

Mater Medical Research Institute, Mater Health Services, Woolloongabba, Australia

BACKGROUND: Provision of an empathetic, sensitive, caring environment and strategies to support mothers, fathers and their families experiencing perinatal death are now an accepted part of maternity services in many countries. Interventions such as psychological support or counselling, or both, have been suggested to improve outcomes for parents and families after perinatal death. OBJECTIVES: To assess the effect of any form of intervention (i.e. medical, nursing, midwifery, social work, psychology, counselling or community-based) on parents and families who experience perinatal death. SEARCH METHODS: We searched the Cochrane Pregnancy and Childbirth Group’s Trials Register (28 January 2013) and article bibliographies. SELECTION CRITERIA: Randomised trials of any form of support aimed at encouraging acceptance of loss, bereavement counselling, or specialised psychotherapy or counselling for mothers, fathers and families experiencing perinatal death. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed eligibility of trials. MAIN RESULTS: No trials were included. AUTHORS’ CONCLUSIONS: Primary healthcare interventions and a strong family and social support network are invaluable to parents and families around the time a baby dies. However, due to the lack of high-quality randomised trials conducted in this area, the true benefits of currently existing interventions aimed at providing support for mothers, fathers and families experiencing perinatal death is unclear. Further, the currently available evidence around the potential detrimental effects of some interventions (e.g. seeing and holding a deceased baby) remains inconclusive at this point in time. However, some well-designed descriptive studies have shown that, under the right circumstances and guided by compassionate, sensitive, experienced staff, parents’ experiences of seeing and holding their deceased baby is often very positive. The sensitive nature of this topic and small sample sizes, make it difficult to develop rigorous clinical trials. Hence, other research designs may further inform practice in this area. Where justified, methodologically rigorous trials are needed. However, methodologically rigorous trials should be considered comparing different approaches to support.

40. Leyland, A. (2013). The Midwife’s Role in Caring for the Needs of Bereaved Parents following a Stillbirth. The Practising Midwife, 16(2), 20–22.

University of Salford, Manchester, UK

The unexpected loss of a baby can be both a devastating and traumatic experience for parents. Inadequate care and support can potentially lead to mental health problems such as complicated or traumatic grief. This article will review the midwife’s role in providing more effective meaningful and supportive care for bereaved parents following a stillbirth. It will also highlight the educational needs of student midwives to ensure they are equipped with the necessary knowledge and skills to support bereaved parents.

41. Lindgren, H., Malm, M. C., & Rådestad, I. (2013). You Don’t Leave your Baby—Mother’s Experiences after a Stillbirth. Omega, 68(4), 337–346.

University of Gothenburg, Sweden and Dalarna University, Falun, Sweden

When a baby has died during pregnancy, the first encounter between mother and child occurs when the baby is already dead. Despair, emptiness, and grief characterize the encounter, which is also a gradual farewell to the child and the planned future for the family. This study describes mothers’ experiences of the farewell of their stillborn baby at discharge from hospital. Twenty-three mothers from different parts of Sweden, who suffered stillbirth, were interviewed. Semi-structured questions were used and the replies were analyzed using content analysis. The mothers describe the separation from the child when leaving hospital as unnatural and that the separation ruins the motherhood they felt during pregnancy. Five categories were identified: unnatural to leave the baby; going home empty-handed; access to the child; security and insecurity in the separation; to let go. The overarching theme that we recognized from these responses we have formulated as: You don’t leave your baby. Leaving the baby at the hospital goes against the biological instinct to care for and protect the offspring. Routines for a dignified goodbye including designating a deputy guardian into whose arms the mother can place the baby can help to facilitate the separation. The possibility of leaving the baby in the arms of someone known to the parents should be an option for parents who choose to take farewell of the child at the hospital. The place and time for the farewell should be decided on by the parents, taking the baby home for a personal farewell could be an alternative.

42. Moore, A. (2013). After a Baby has Died. Nursing Standard, 27(50), 20–21.

Princess Alexandra Hospital in Harlow has developed and innovative staff training course, ‘Death of a Baby’, which has improved the care provided to parents who have lost a baby. It is open to all hospital staff, who are taught how to communicate sensitively and how to answer parents’ questions about practical issues. The course also equips staff to cope with their own feelings of distress and loss in such a situation, and to be able to support each other.

43. O’Leary, J., & Warland, J. (2013). Untold Stories of Infant Loss: The Importance of Contact with the Baby for Bereaved Parents. Journal of Family Nursing, 19(3), 324–347. doi: 10.1177/1074840713495972

Field faculty, Center for Early Education and Development, University of Minnesota, Minneaplis, MN, USA. University of South Australia, Adelaide SA, Australia

This article presents secondary analysis of data from parents who, 50 to 70 years ago, birthed stillborn babies or babies with lethal anomalies and from adult children born after these losses. The stories reflect a time in history when parents were “protected” from seeing or holding their babies and mothers were unable to attend the funeral. There was no understanding by society or caregivers for parents’ need to process the loss or resources to build memories. They provide a strong argument for health care providers to offer such resources to parents today and offer grief support.

44. Pearce, L. (2013). A Place to Say Goodbye. Nursing Standard, 27(46), 22. doi: 10.7748/ns2013.

East Anglia’s Children’s Hospices ten years ago: virtually every neonatal death in the area occurred in hospital.

45. Breeze, A. C. G., Statham, H., Hackett, G. A., Jessop, F. A., & Lees, C. C. (2012). Perinatal Postmortems: What is Important to Parents and How do they Decide? Birth, I(1), 57–64. doi: 10.1111/j.1523-536X.2011.00513.x

Centre for Family Research, University of Cambridge, Cambridge, UK

BACKGROUND: Falling consent rates for postmortems, regardless of age of death, have been widely reported in recent years. The aim of this study was to explore parental attitudes to, and decision-making about, a perinatal postmortem after termination for fetal abnormality, late miscarriage, or stillbirth. METHODS: A prospective self-completion questionnaire was given to 35 women and their partners. The participants had experienced second or third trimester pregnancy loss in a single fetal medicine and delivery unit in the United Kingdom and were making decisions about having a postmortem. They were asked to complete a questionnaire about their attitudes to, and expectations of, a perinatal postmortem. RESULTS: Thirty-one questionnaires were received from parents of 17 babies (49% of those asked; 16 from mothers, 15 from fathers). Parents of nine babies (53%) said they would agree to a full postmortem, of three babies to a limited postmortem, and of four babies to an external examination only; one couple were undecided. The most important issues for the parents in this study that related to their decisions about a postmortem centered on the need for information, both for future planning and about what had happened. Moderately important issues related to altruism, which is, improving medical knowledge and helping other parents experiencing similar bereavement. Among the lowest scoring issues were potential barriers, such as concerns about cultural or religious acceptability of a postmortem, funeral delays, and what would happen to the baby’s body. CONCLUSIONS: Bereaved parents who participated in this study, where postmortem consent rates were relatively high, thought that their need for knowledge eclipsed assumed barriers when deciding whether or not to have a postmortem for their baby.

46. Cunningham, K. A. (2012). Holding a Stillborn Baby: Does the Existing Evidence Help us Provide Guidance? The Medical Journal of Australia, 196(9), 558–560. doi: 10.5694/mja11.11417

School of Medicine, University of Queensland, Brisbane, QLD, Australia

It is now less clear how parents should be advised

Comment in: Flenady, V. J., Carroll, C., & Richardson, R. M. (2012). Support for Parents following Stillbirth. The Medical Journal of Australia, 197(5), 276.

47. Friedman, T. C., & Bloom, A. M. (2012). When Death Precedes Birth: Experience of a Palliative Care Team on a Labor and Delivery Unit. Journal of Palliative Medicine, 15(3), 274–276. doi: 10.1089/jpm.2011.0269

VITAS Palliative Care Solutions, Blue Bell, PA, USA

BACKGROUND: With increasing recognition and availability of palliative care, interdisciplinary palliative care teams continue to discover novel opportunities to enhance patient-centered care and improve hospital staff satisfaction. As a new palliative care consultation service in a large urban academic tertiary care setting, we found unanticipated palliative care needs on the labor and delivery unit. Women experiencing sudden intrauterine death, and the health care providers who care for them, have unique palliative care needs. CONCLUSION: In some circumstances an interdisciplinary palliative care team, may help to address acute grief and provide ongoing staff support. Case examples of our palliative care team’s experience are instructive.

48. Pullen, S., Golden, M. A., & Cacciatore, J. (2012). “I’ll Never Forget those Cold Words as Long as I Live”: Parent Perceptions of Death Notification for Stillbirth. Journal of Social Work in End-of-Life & Palliative Care, 8(4), 339–355. doi: 10.1080/15524256.2012.732022

Hugh Downs School of Human Communication, Arizona State University, Tempe, AZ, USA

This qualitative study analyzed stillbirth notification messages recalled by parents who strongly agreed (n = 47) and strongly disagreed (n = 43) that the way news about the death of their infant was delivered negatively impacted their grieving process. Three message elements formed a core stillbirth notification experience (delay of news delivery; expression of sympathy; communication of death), and three additional message elements occurred in both data sets (communication regarding options; expression of uncertainty; exit of health care provider); however, the messages differed in form and frequency between the two groups. Three message elements reflected opposing experiences for the two groups (support of parent emotion; continuity of care; and information provision). Recommendations for stillbirth notification that emphasize acknowledging parent perceptions, clear language and information, empathetic communication, and continuity of care are given.

49. Woodroffe, I. (2013). Supporting Bereaved Families through Neonatal Death and beyond. Seminars in Fetal & Neonatal Medicine, 18(2), 99–104. doi: 10.1016/j.siny.2012.10.010

Cambridge, UK

The article reviews the contributing factors of parental grief following the admission and death of a pre-term baby to neonatal intensive care. The psychological duty of care towards parents is examined with regard to grief theory.

50. Heazell, A. E. P., McLaughlin, M.-J., Schmidt, E. B., Cox, P., Flenady, V., Khong, T. Y., & Downe, S. (2012). A Difficult Conversation? The Views and Experiences of Parents and Professionals on the Consent Process for Perinatal Postmortem after Stillbirth. BJOG: An International Journal of Obstetrics and Gynaecology, 119(8), 987–997. doi: 10.1111/j.1471-0528.2012.03357.x

Maternal and Fetal Health Research Centre, Manchester Academic Science Centre, University of Manchester, Manchester, UK [3rd author: Mater Medical Research Institute and University of Queensland, Brisbane, Queensland, Australia, 4th author:  University of Adelaide, Adelaide, South Australia, Australia]

OBJECTIVE: To describe the experiences, knowledge and views of both parents and professionals regarding the consent process for perinatal postmortem. DESIGN: Internet-based survey. SETTING: Obstetricians, midwives and perinatal pathologists currently working in the UK. Parents who have experienced a stillbirth in the UK in the previous 10 years. SAMPLE: Obstetricians, midwives and perinatal pathologists registered with their professional bodies. Parents who accessed the Sands website or online forum. METHODS: Online self-completion questionnaire with both fixed-choice and open-ended questions. RESULTS: Responses were analysed from 2256 midwives, 354 obstetricians, 21 perinatal pathologists and 460 parents. The most common reason for parents to request postmortem examination was to find a cause for their baby’s death; the prevention of stillbirths in others also ranked highly. Perinatal pathologists possessed greatest knowledge of the procedure and efficacy of postmortem, but were unlikely to meet bereaved parents. The majority of professionals and parents ranked emotional distress and a lengthy wait for results as barriers to consent. The majority of staff ranked workload, negative publicity, religion and cultural issues as important barriers, whereas most parents did not. Almost twice as many parents who declined postmortem examination later regretted their decision compared with those who accepted the offer (34.4 versus 17.4%). CONCLUSION: Emotional, practical and psychosocial issues can act as real or perceived barriers for staff and bereaved parents. Education is required for midwives and obstetricians, to increase their knowledge to ensure accurate counselling, with due regard for the highly individual responses of bereaved parents. The contribution of perinatal pathologists to staff education and parental decision-making would be invaluable.

51. Kelley, M. C., & Trinidad, S. B. (2012). Silent Loss and the Clinical Encounter: Parents’ and Physicians’ Experiences of Stillbirth-A Qualitative Analysis. BMC Pregnancy and Childbirth, 12, 137. doi: 10.1186/1471-2393-12-137 [full text]

Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA

BACKGROUND: In the United States, an estimated 70 stillbirths occur each day, on average 25,000 each year. Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill equipped to support grieving parents. Interventions to address bereavement after neonatal death are increasingly common in U.S. hospitals, and there is growing data on the nature of parent bereavement after a stillbirth. However, further research is needed to evaluate supportive interventions and to investigate the parent-clinician encounter during hospitalization following a stillbirth. Qualitative inquiry offers opportunities to better understand the lived experience of parents against the backdrop of clinicians’ beliefs, intentions, and well-meaning efforts to support grieving parents. METHODS: We present a secondary qualitative analysis of transcript data from 3 semi-structured focus groups conducted with parents who had experienced a stillbirth and delivered in a hospital, and 2 focus groups with obstetrician-gynecologists. Participants were drawn from the greater Seattle region in Washington State. We examine parents’ and physicians’ experiences and beliefs surrounding stillbirth during the clinical encounter using iterative discourse analysis. RESULTS: Women reported that the cheery, bustling environment of the labor and delivery setting was a painful place for parents who had had a stillbirth, and that the well-meaning attempts of physicians to offer comfort often had the opposite effect. Parents also reported that their grief is deeply felt but not socially recognized. While physicians recognized patients’ grief, they did not grasp its depth or duration. Physicians viewed stillbirth as an unexpected clinical tragedy, though several considered stillbirth less traumatic than the death of a neonate. In the months and years following a stillbirth, these parents continue to memorialize their children as part of their family. CONCLUSIONS: Hospitals need to examine the physical environment for deliveries and, wherever possible, offer designated private areas with staff trained in stillbirth care. Training programs in obstetrics need to better address the bereavement needs of parents following a stillbirth, and research is needed to evaluate effective bereavement interventions, accounting for cultural variation. Critical improvements are also needed for mental health support beyond hospitalization. Finally, medical professionals and parents can Play an important role in reversing the stigma that surrounds stillbirth.

52. Cacciatore, J. (2011). Psychosocial Care. In Spong, C. (ed.). Stillbirth: Prediction, Prevention and Management. Wiley-Blackwell, London. Find in an Australian library

53. Thompson, S. & University of Western Australia. School of Humanities (2008). Birth Pains: Changing Understandings of Miscarriage, Stillbirth and Neonatal Death in Australia in the Twentieth Century. Ph.D. Thesis, University of Western Australia. [full text]

Feminist and social historians have long been interested in that particularly female ability to become pregnant and bear children. A significant body of historiography has challenged the notion that pregnancy and childbirth considered to be the acceptable and ‘appropriate’ roles for women for most of the twentieth century in Australia - have always been welcomed, rewarding and always fulfilling events in women’s lives. Several historians have also begun the process of enlarging our knowledge of the changing cultural attitudes towards bereavement in Australia and the eschewing of the public expression of sorrow following the two World Wars; a significant contribution to scholarship which underscores the changing attitudes towards perinatal loss. It is estimated that one in four women lose a pregnancy to miscarriage, and two in one hundred late pregnancies result in stillbirth in contemporary Australia. Miscarriage, stillbirth and neonatal death are today considered by psychologists and social workers, amongst others, as potentially significant events in many women’s lives, yet have received little or passing attention in historical scholarship concerned with pregnancy and motherhood. As such, this study focuses on pregnancy loss: the meaning it has been given by various groups at different times in Australia’s past, and how some Australian women have made sense of their own experience of miscarriage, stillbirth or neonatal death within particular social and historical contexts. Pregnancy loss has been understood in a range of ways by different groups over the past 100 years. At the beginning of the twentieth century, when alarm was mounting over the declining birth rate, pregnancy loss was termed ‘foetal wastage’ by eugenicists and medical practitioners, and was seen in abstract terms as the loss of necessary future Australian citizens. By the 1970s, however, with the advent of support groups such as SANDS (Stillbirth and Neonatal Death Support) miscarriage and stillbirth were increasingly seen as the devastating loss of an individual baby, while the mother was seen as someone in need of emotional and other support. With the advent of new prenatal screening technologies in the late twentieth century, there has been a return of the idea of maternal responsibility for producing a ‘successful’ outcome. This project seeks to critically examines the wide range of socially constructed meanings of pregnancy loss and interrogate the arguments of those groups, such as the medical profession, religious and support groups, participating in these constructions. It will build on existing histories of motherhood, childbirth and pregnancy in Australia and, therefore, also the history of Australian women.

54. Kobler, K. (2014). Leaning In and Holding On: TEAM SUPPORT with Unexpected Death. MCN, 39(3), 148-156. doi:10.1097/NMC.0000000000000028

APN, Pediatric Palliative Care, Advocate Children’s Hospital, Park Ridge, IL, USA

Integral to the care of medically fragile infants and children is the sobering reality that not all will survive. Supporting children and families through the dying process requires knowledge, skill, compassion, and a willingness to be present to the suffering of others. As healthcare professionals journey with a dying child, they experience an ongoing dual nature of their own grief, shifting between focusing on the loss at hand or avoiding the loss and refocusing their attention elsewhere. This internal conflict may be potentiated with the sudden, unexpected death of a patient, which affords little time for caregivers to process their own experience of the loss. When an unanticipated death occurs, a palpable grief ripples through the entire unit, impacting caregivers, the bereaved parents, and other patients and families. Such an event holds the potential for either team disorganization or growth. This article presents a case study of one unit’s response to the unexpected death of a long-term patient, which caused caregivers to lean in to support each other. Using a case study approach, the author identifies strategies to best guide teams when death arrives without warning, and provides ideas for cocreating ritual to honor relationship in the midst of tragedy.

55. McKinley, T. L. (2011). Hirsch’s Silent Birth. Midwifery Today with International Midwife, (99): 42.

Dad announced that their baby was a boy (as the momma had thought prenatally). Because I knew how strong their faith was, I said to them, “Is there a special prayer or blessing one would say at this time - at a birth or a death?” They then recited a blessing they say when one passes. Look at what Hirsch’s short time has already provided - information to share with other midwives when they serve the family of a stillborn baby, and a mother who can help midwife other mothers through this journey.

56. McKinley, T. L. (2011). Stillbirth - A Journey in Birth. Midwifery Today with International Midwife, (99). 39. Includes inset: Gruenberg, B. On Photographing a Stillbirth.

Homebirth midwife, herbalist and writer. New Jersey and Connecticut

Extract: Midwifing a Stillbirth… Whether or not we as midwives have been trained to support a family during a stillbirth, respect, honor, reverence and sacredness for their journey are of the utmost importance…

57. Mander, R. (2006). Loss and Bereavement in Childbearing (2 ed). Routledge, Abingdon, Oxon. Find in an Australian library

Combining an authoritative research-based orientation with a critical yet human approach to this sensitive topic, the book aids midwives in providing effective care and support to those who experience loss. This book will be of interest to both practising and student midwives as well as other health professionals, bereavement counsellors, bereavement researchers and parents.”—BOOK JACKET

58. Cacciatore, J. (2013). Psychological Effects of Stillbirth. Seminars in Fetal & Neonatal Medicine, 18(2), 76–82. doi: 10.1016/j.siny.2012.09.001

Arizona State University, School of Social Work, Phoenix, AZ, USA

Despite the high prevalence globally, the death of a baby to stillbirth is an often misunderstood and disenfranchised loss. Mothers, fathers, and families struggle to cope with the immediate and long-lasting effects of a baby’s death which can last for years and sometimes decades. In addition, providers can be adversely affected by stillbirth, particularly when met with experiential avoidance and a sense of guilt and failure. There is little evidence on intervention efficacy in acute grief following perinatal death; however, there is a growing body of scientific literature on the efficacy of mindfulness-based interventions in treating anxiety, depression, and other biopsychosocial maladies as well as improving patient satisfaction with psychosocial care. This paper explores one such intervention model, ATTEND (attunement, trust, therapeutic touch, egalitarianism, nuance, and death education), as a means to improve psychosocial care during both acute and chronic states of bereavement. Whereas the death of a baby to stillbirth is the ultimate paradox for providers and patients - the convergence of life and death and the fundamental contradiction it represents - with proper care and compassion, families stand a better chance in the face of such indescribable loss and they need not suffer alone.

59. Fenstermacher, K., & Hupcey, J. E. (2013). Perinatal Bereavement: A Principle-based Concept Analysis. Journal of Advanced Nursing, 69(11), 2389–2400. doi: 10.1111/jan.12119 [full text]

Nursing, York College of Pennsylvania, York, PA, USA

Aim This paper is a report of an analysis of the concept of perinatal bereavement. Background The concept of perinatal bereavement emerged in the scientific literature during the 1970s. Perinatal bereavement is a practice based concept, although it is not well defined in the scientific literature and is often intermingled with the concepts of mourning and grief. Design Concept Analysis. Data Sources Using the term ‘perinatal bereavement’ and limits of only English and human, Pub Med and CINAHL were searched to yield 278 available references dating from 1974 – 2011. Articles specific to the experience of perinatal bereavement were reviewed. The final data set was 143 articles. Review Methods The methods of principle-based concept analysis were used. Results reveal conceptual components (antecedents, attributes and outcomes) which are delineated to create a theoretical definition of perinatal bereavement. Results The concept is epistemologically immature, with few explicit definitions to describe the phenomenon. Inconsistency in conceptual meaning threatens the construct validity of measurement tools for perinatal bereavement and contributes to incongruent theoretical definitions. This has implications for both nursing science (how the concept is studied and theoretically integrated) and clinical practice (timing and delivery of support interventions). Conclusions Perinatal bereavement is a multifaceted global phenomenon that follows perinatal loss. Lack of conceptual clarity and lack of a clearly articulated conceptual definition impede the synthesis and translation of research findings into practice. A theoretical definition of perinatal bereavement is offered as a platform for researchers to advance the concept through research and theory development.

60. Gold, K. J., Boggs, M. E., Mugisha, E., & Palladino, C. L. (2012). Internet Message Boards for Pregnancy Loss: Who’s On-line and Why? Women’s Health Issues, 22(1), e67–72. doi: 10.1016/j.whi.2011.07.006 [full text]

Department of Family Medicine, Department of Obstetrics & Gynecology, University of Michigan, Ann Arbor, MI, USA

Background Pregnancy loss is a common event but its significance is often minimized by family, friends, and community, leaving bereaved parents with unmet need for support. This study sought to describe demographics, usage patterns, and perceived benefits for women participating in internet pregnancy loss support groups. Methods We requested permission to post an anonymous internet survey on large and active United States internet message boards for women with miscarriages and stillbirths. The study purposefully oversampled stillbirth sites and included both closed and open-ended questions. The University of Michigan Institutional Review Board approved the study. Closed-ended questions were summarized and evaluated with bivariable analysis. We performed a qualitative analysis of open-ended data using an iterative coding process to identify key themes. Results Of 62 sites queried, 15 granted permission to post the survey on 18 different message boards. We collected 1039 surveys of which 1006 were complete and eligible for analysis. Women were typically white, well-educated, and frequent users. They noted message boards helped them feel less isolated in their loss and grief and they appreciated unique aspects of internet communication such as convenience, access, anonymity, and privacy. Pregnancy loss message boards are an important aspect of support for many bereaved mothers. African-Americans women appear to be substantially underrepresented on-line despite being at higher risk for stillbirth. Conclusions Internet message boards serve a unique function in providing support for women with miscarriage and stillbirth and the benefits are often significantly different from those encountered in traditional face-to-face bereavement support.

61. Thompson, S. & University of Western Australia. School of Humanities (2008). Birth Pains: Changing Understandings of Miscarriage, Stillbirth and Neonatal Death in Australia in the Twentieth Century. Ph.D. Thesis, University of Western Australia. [full text]

Feminist and social historians have long been interested in that particularly female ability to become pregnant and bear children. A significant body of historiography has challenged the notion that pregnancy and childbirth considered to be the acceptable and ‘appropriate’ roles for women for most of the twentieth century in Australia - have always been welcomed, rewarding and always fulfilling events in women’s lives. Several historians have also begun the process of enlarging our knowledge of the changing cultural attitudes towards bereavement in Australia and the eschewing of the public expression of sorrow following the two World Wars; a significant contribution to scholarship which underscores the changing attitudes towards perinatal loss. It is estimated that one in four women lose a pregnancy to miscarriage, and two in one hundred late pregnancies result in stillbirth in contemporary Australia. Miscarriage, stillbirth and neonatal death are today considered by psychologists and social workers, amongst others, as potentially significant events in many women’s lives, yet have received little or passing attention in historical scholarship concerned with pregnancy and motherhood. As such, this study focuses on pregnancy loss: the meaning it has been given by various groups at different times in Australia’s past, and how some Australian women have made sense of their own experience of miscarriage, stillbirth or neonatal death within particular social and historical contexts. Pregnancy loss has been understood in a range of ways by different groups over the past 100 years. At the beginning of the twentieth century, when alarm was mounting over the declining birth rate, pregnancy loss was termed ‘foetal wastage’ by eugenicists and medical practitioners, and was seen in abstract terms as the loss of necessary future Australian citizens. By the 1970s, however, with the advent of support groups such as SANDS (Stillbirth and Neonatal Death Support) miscarriage and stillbirth were increasingly seen as the devastating loss of an individual baby, while the mother was seen as someone in need of emotional and other support. With the advent of new prenatal screening technologies in the late twentieth century, there has been a return of the idea of maternal responsibility for producing a ‘successful’ outcome. This project seeks to critically examines the wide range of socially constructed meanings of pregnancy loss and interrogate the arguments of those groups, such as the medical profession, religious and support groups, participating in these constructions. It will build on existing histories of motherhood, childbirth and pregnancy in Australia and, therefore, also the history of Australian women.

Last reviewed: 15/7/17