Search

Problem: The COVID-19 pandemic hindered access to routine healthcare globally, prompting concerns about possible increases in pregnancy loss and perinatal death., Background: PUDDLES is an international collaboration exploring the impact of the COVID-19 pandemic on parents who experience pregnancy loss and perinatal death in seven countries, including Aotearoa New Zealand., Aim: To explore parents' experiences of access to healthcare services and support following baby loss during the COVID-19 pandemic in Aotearoa New Zealand., Methods: We conducted in-depth, semi-structured interviews with 26 bereaved parents, including 20 birthing mothers, and six non-birthing parents (one mother and five fathers). Types of loss included 15 stillbirths, four late miscarriages, and one neonatal death. Participant ethnicities were broadly representative of Aotearoa New Zealand's multi-ethnic society. Data were analysed using Template Analysis., Findings: Analysis revealed five themes relating to pandemic impact on bereaved parent's experiences. These were: 'Distanced and Impersonal care'; 'Navigating Hospital Rules'; Exclusion of Non-birthing Parents; 'Hindered Access to Social Support'; and 'Continuity of Relational Care'., Discussion: The COVID-19 pandemic exacerbated isolation of bereaved parents through perceived impersonal care by healthcare professionals and restrictions on movement hindered access to social and cultural support. Compassionate bending of the rules by healthcare professionals and community postnatal visits by continuity of care midwives following the bereavement appeared to be mitigating factors., Conclusion: Social isolation is an added challenge for parents experiencing baby loss during a pandemic, which may be mitigated by flexible and compassionate care from healthcare professionals, especially continuity of care midwives., Competing Interests: Declaration of Competing Interest None of the authors have any competing interests to declare., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Although guidelines exist regarding optimal interpregnancy interval (IPI) after live birth, both optimal IPI and counseling regarding recommended IPI (rIPI) after stillbirth or neonatal death is not well established. Our goal was to describe the counseling bereaved parents receive regarding IPI, parents' reactions to that counseling, and actual IPI after loss., Study Design: Bereaved parents who had a previous pregnancy result in stillbirth or neonatal death participated in a web-based survey. Questions included demographics, details of stillbirth or neonatal death, IPI counseling, and pregnancy after loss. Demographic information, rIPI, and ac'tual IPI were reported using descriptive statistics. The Wilcoxon's rank sum test was used to test the association between rIPI and mode of delivery. The Spearman's correlation was used to test the association between rIPI and maternal age., Results: A total of 275 surveys were analyzed. Mean gestational age of stillbirth delivery was 33.1 (standard deviation: 6.6) weeks. A total of 29% delivered via cesarean. Median rIPI was 6 (interquartile ratio [IQR]: 2-9) months, with the primary reason for IPI reported as the need to heal (74%). Delivery via cesarean was associated with longer rIPI, 9 versus 4.2 months ( p  < 0.0001). Maternal age was not associated with rIPI. Of 144 people who pursued pregnancy again, median time until attempting conception was 3.5 (IQR: 2-6) months. Median actual IPI was 6 (IQR: 4-10) months., Conclusion: Bereaved parents receive a wide range of counseling regarding rIPI. The majority receive rIPI and pursue actual IPI shorter than current national and international recommendations for optimal IPI., Key Points: · There is variation in IPI recommendation after stillbirth/neonatal death.. · Cesarean birth is associated with longer IPI recommendation, but maternal age is not.. · Median IPI after stillbirth or neonatal death was short: 6 (IQR: 4-10) months.., Competing Interests: None declared., (Thieme. All rights reserved.)

In this study, we describe continuing bonds and grief reactions and assess their association in 980 parents bereaved in pregnancy, at or shortly after birth. We found that most parents experienced continuing bonds. However, they differed by type of loss. Parents losing their child due to termination of pregnancy or miscarriage experienced bonds less frequently and had the least intense grief reaction. Parents losing their child postpartum experienced bonds most frequently and had the most intense grief reaction. Continuing bonds were associated with intensified grief in parents losing their child after termination or miscarriage, while this relationship was less obvious after stillbirth or postpartum death.

Background: In Canada, nearly nine pregnancies end in stillbirth daily. Most of these families will go on to have subsequent pregnancies, but research into how best to care for these parents is lacking. This study explores the lived experiences and the most important aspects of person-centred care for Canadian families experiencing a pregnancy after a stillbirth., Methods: This qualitative descriptive design used secondary data collected from an online, international survey for bereaved parents who reported having experienced a pregnancy subsequent to a stillbirth. Only parents who identified as Canadian were included in this study. Three open text questions were asked about parents' experiences in their subsequent pregnancy. An inductive thematic analysis approach was used with open coding and a constant comparative method., Results: Families' responses fell into six main themes that identified what they would have preferred for high quality, excellent care. These included: (1) recognizing anxiety throughout the subsequent pregnancy, (2) wanting one's voices and concerns to be heard and taken seriously, (3) needing additional and specific clinical care for reassurance, (4) desiring kindness and empathy from caregivers and others, (5) seeking support from others who had also experienced pregnancy after stillbirth; and (6) addressing mixed emotions including guilt, continuity of care and carer, positive thoughts versus more realistic ones, and poignant feelings of self-blame., Conclusions: Participants' responses identified that pregnancy after stillbirth is an extremely stressful time requiring patient-oriented care and support, both physically and psychologically. Families were able to articulate specific areas that would have improved the experience of their subsequent pregnancy. Parents asked for high-quality clinical and psychosocial prenatal care that was specific to them having experienced a prior stillbirth. They also requested connections to others experiencing this similar scenario. Further research is needed to delineate what supports and resources would be needed to ensure this care would be available to all families experiencing pregnancy after stillbirth across Canada and their caregivers., (© 2023. The Author(s).)

Background: Stillbirth is a traumatic life-event for parents. Compassionate care from health workers supports grief and adjustment, alleviating psychological distress and minimising serious adverse health and social consequences. Bereavement support in facilities in LMICs, including in sub-Saharan Africa, often fails to meet parents' needs. However, very few studies have explored health worker's experiences in these settings., Aim: To explore the lived experiences of midwives, doctors and others, caring for women after stillbirth in Kenya and Uganda., Methods: Qualitative, guided by Heideggerian phenomenology. Sixty-one health workers, including nurse-midwives (N = 37), midwives (N = 12) and doctors (N = 10), working in five facilities in Kenya and Uganda, were interviewed. Data were analysed following Van Manen's reflexive approach., Results: Three main themes summarised participants' experiences: 'In the mud and you learn to swim in it' reflected a perceived of lack of preparation; skills were gained through experience and often without adequate support. The emotional and psychological impacts including sadness, frustration, guilt and shame were summarised in 'It's bad, it's a sad experience'. Deficiencies in organisational culture and support, which entrenched blame, fear and negative behaviours were encapsulated in Nobody asks 'how are you doing?'., Conclusion: Health workers in Kenya and Uganda were deeply sensitive to the impacts of stillbirth for women and families, and often profoundly and personally affected. Care and psychological support were acknowledged as often inadequate. Interventions to support improved bereavement care in sub-Saharan Africa need to target increasing health worker knowledge and awareness and also embed supportive organisational cultures and processes., Competing Interests: Conflicts of interest The authors declare they have no conflict of interests., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: To explore the views of women, partners, families, health workers and community leaders of potential investigations to determine the cause(s) of stillbirth, in Malawi, Tanzania and Zambia., Design: Grounded theory., Setting: Tertiary facilities and community settings in Blantyre, Malawi, Mwanza, Tanzania and Mansa, Zambia., Sample: Purposive and theoretical sampling was used to recruit 124 participants: 33 women, 18 partners, 19 family members, 29 health workers and 25 community leaders, across three countries., Methods: Semi-structured interviews were conducted using a topic guide for focus. Analysis was completed using constant comparative analysis. Sampling ceased at data saturation., Results: Women wanted to know the cause of stillbirth, but this was tempered by their fear of the implications of this knowledge; in particular, the potential for them to be blamed for the death of their baby. There were also concerns about the potential consequences of denying tradition and culture. Non-invasive investigations were most likely to be accepted on the basis of causing less 'harm' to the baby. Parents' decision-making was influenced by type of investigation, family and cultural influences and financial cost., Conclusions: Parents want to understand the cause of death, but face emotional, cultural and economic barriers to this. Offering investigations will require these barriers to be addressed, services to be available and a no-blame culture developed to improve outcomes. Community awareness, education and support for parents in making decisions are vital prior to implementing investigations in these settings., (© 2022 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd.)

Aim: To explore parents' perspective on hospital's care and management of the remains of stillborn babies., Background: Each year, 2.6 million of pregnancies end as stillbirth. Recent literature began to understand parents' traumatic experience in stillbirth and its profound impact on parents' mental health and psychosocial effect. But there is limited understanding on the actual care and management of the stillborn baby, nor is there an agreement on how hospitals should care for the stillborn baby to mitigate parents' profound loss., Design: A descriptive phenomenological approach was applied to conduct this study., Methods: A purposive sample of twenty couples (40 individuals) who had encountered how to care for the remains of their stillborn babies participated in the study. The data were collected through in-depth interviews, which involved semi-structured and open-ended questions. The phenomenological methods of Giorgi were applied to analyse the data. The COREQ checklist was used preparing the manuscript., Results: Parents felt unprepared and lack of support when they had to handle their stillborn babies' remains. The research results revealed two major themes: (1) Handling stillborn babies remain ignorantly; (2) Pacifying the disturbed soul on both sides., Conclusions: It was found in the study that reflection and identification were the emerging themes, which can enable healthcare professionals to understand parents' concerns in a meaningful way, as they deal with the remains of stillborn babies. Moreover, it is hoped that hospital administration and health care personnel should consider stillborn parents' concerns and incorporate their needs into nursing assessment and treatment practices., Relevance to Clinical Practice: Given stillbirth's profound implication for parents' identity and psychosocial role, hospitals need to be more sensitive and proactive to parents' cultural and religious needs when they care for stillborn baby and handle its body., (© 2021 John Wiley & Sons Ltd.)

Background: The COVID-19 pandemic poses an unprecedented risk to the global population. Maternity care in the UK was subject to many iterations of guidance on how best to reconfigure services to keep women, their families and babies, and healthcare professionals safe. Parents who experience a pregnancy loss or perinatal death require particular care and support. PUDDLES is an international collaboration investigating the experiences of recently bereaved parents who suffered a late miscarriage, stillbirth, or neonatal death during the global COVID-19 pandemic, in seven countries. In this study, we aim to present early findings from qualitative work undertaken with recently bereaved parents in the United Kingdom about how access to healthcare and support services was negotiated during the pandemic., Methods: In-depth semi-structured interviews were undertaken with parents (N = 24) who had suffered a late miscarriage (n = 5; all mothers), stillbirth (n = 16; 13 mothers, 1 father, 1 joint interview involving both parents), or neonatal death (n = 3; all mothers). Data were analysed using a template analysis with the aim of investigating bereaved parents' access to services, care, and networks of support, during the pandemic after their bereavement., Results: All parents had experience of utilising reconfigured maternity and/or neonatal, and bereavement care services during the pandemic. The themes utilised in the template analysis were: 1) The Shock & Confusion Associated with Necessary Restrictions to Daily Life; 2) Fragmented Care and Far Away Families; 3) Keeping Safe by Staying Away; and 4) Impersonal Care and Support Through a Screen. Results suggest access to maternity, neonatal, and bereavement care services were all significantly reduced, and parents' experiences were notably affected by service reconfigurations., Conclusions: Our findings, whilst preliminary, are important to document now, to help inform care and service provision as the pandemic continues and to provide learning for ongoing and future health system shocks. We draw conclusions on how to enable development of safe and appropriate services during this pandemic and any future health crises, to best support parents who experience a pregnancy loss or whose babies die., (© 2021. The Author(s).)

Background: This systematic review aimed to provide an updated summary of studies investigating depression, anxiety, post-traumatic stress disorder (PTSD), and obsessive-compulsive disorder (OCD) in parents after stillbirth (from 20 weeks gestational age until birth)., Methods: A literature search was conducted in the databases Web of Science and PsychINFO. Main inclusion criteria were 1) peer-reviewed, quantitative, English-language articles published from 1980; (2) studies investigating depression, anxiety, PTSD, or OCD among parents following stillbirth; and (3) studies defining stillbirth as equal to or after 20 weeks of gestation., Results: Thirteen quantitative, peer-reviewed articles were eligible for inclusion. Selected articles investigated depression, anxiety, and PTSD, while no studies on OCD met our inclusion criteria. The majority of studies investigated women, while only two studies included men. The results indicated heightened short- and long-term levels of depression, anxiety, and PTSD in parents after stillbirth compared to those of parents with live birth. Studies investigating predictors found that social support, marital status, negative appraisals, and variables related to care and management after stillbirth affected levels of symptoms., Conclusions: Parents who experience stillbirth have a considerably higher risk of reporting symptoms of depression, anxiety, and PTSD compared with parents with live births. More longitudinal studies are needed to increase our knowledge of how symptoms develop over time, and more research on fathers, transgender, non-binary and gender fluid individuals is needed. Research on the association between stillbirth and OCD is also warranted. Knowledge of the severity of anxiety, depression, and PTSD after stillbirth, and predictors associated with symptom severity could provide healthcare professionals with valuable information on how to provide beneficial postpartum care., (© 2021. The Author(s).)

Background: Stillbirth is an extremely traumatic and distressing experience for parents, with profound and long-lasting negative impacts. Cultural beliefs and practices surrounding death vary considerably across different contexts and groups, and are a key influence on individual experiences, impacting grief, adjustment, and support needs. Few studies have explored cultural influences surrounding stillbirth in an African context. This study explored the influence of cultural beliefs and practices on the experiences of bereaved parents and health workers after stillbirth in urban and rural settings in Kenya and Uganda., Methods: A qualitative descriptive study design was employed. Face to face interviews were conducted with parents (N = 134) who experienced a stillbirth (≤ 1 year) and health workers (N = 61) at five facilities in Uganda and Kenya. Interviews were conducted in English or the participants' local language, audio-recorded and transcribed verbatim. Analysis was conducted using descriptive thematic analysis., Results: Commonalities in cultural beliefs and practices existed across the two countries. Three main themes were identified: 1) Gathering round, describes the collective support parents received from family and friends after stillbirth. 2)'It is against our custom' addresses cultural constraints and prohibitions impacting parents' behaviour and coping in the immediate aftermath of the baby's death. 3) 'Maybe it's God's plan or witchcraft' summarises spiritual, supernatural, and social beliefs surrounding the causes of stillbirth., Conclusions: Kinship and social support helped parents to cope with the loss and grief. However, other practices and beliefs surrounding stillbirth were sometimes a source of stress, fear, stigma and anxiety especially to the women. Conforming to cultural practices meant that parents were prevented from: holding and seeing their baby, openly discussing the death, memory-making and attending the burial. The conflict between addressing their own needs and complying with community norms hindered parents' grief and adjustment. There is an urgent need to develop culturally sensitive community programmes geared towards demystifying stillbirths and providing an avenue for parents to grieve in their own way.

Background: Bereavement from a twin pregnancy can result in complex emotions as parents are often caring for a surviving sibling while mourning the loss of their infant. Health professionals have reported feeling ill-equipped to deal with the specific needs of parents in this situation. Our aim was to ascertain the current knowledge, training needs and self-rated confidence of health professionals in providing support to parents who have experienced a loss from a twin pregnancy., Methods: We used an online survey, sent by email via professional organisations and clinical networks, to neonatal and fetal medicine doctors, neonatal nurses, and midwives. Respondents provided anonymous responses to questions on their experience of training and knowledge of existing guidelines, confidence in supporting parents and current practice in their hospital neonatal unit., Results: We received 293 responses. Less than half (47.3%) of respondents had received training for supporting parents and 62% felt more training and further guidelines were required. Less than a third of respondents reported having no or some confidence when providing emotional support to parents., Conclusions: Current training and guidelines in the UK to support health professionals caring for parents who have experienced a loss from a twin pregnancy are inadequate. Guidelines for healthcare professionals who support parents experiencing the loss of a baby from a twin pregnancy are needed.

Background: For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. Validating the grief of these losses has been a challenge to Brazilian society, which is evident considering the childbirth care offered to bereaved families in maternity wards. Positively assessed care that brings physical and emotional memories about the baby has a positive impact on the bereavement process that family undergoes. Therefore, this study aims to assess the effects supportive guidelines have on mental health. They were designed to assist grieving parents and their families while undergoing perinatal loss in public maternities in Ribeirão Preto, São Paulo state, Brazil., Method: A mixed-methods (qualitative/quantitative), quasi-experimental (before/after) study. The intervention is the implementation of bereavement supportive guidelines for women who experienced a stillbirth or a neonatal death. A total of forty women will be included. Twenty participants will be assessed before and twenty will be assessed after the implementation of the guidelines. A semi-structured questionnaire and three scales will be used to assess the effects of the guidelines. Health care professionals and managers of all childbirth facilities will be invited to participate in focus group. Data will be analyzed using statistical tests, as well as thematic analysis approach., Discussion: The Perinatal Bereavement guidelines are a local adaptation of the Canadian and British corresponding guidelines. These guidelines have been developed based on the families' needs of baby memories during the bereavement process and include the following aspects: (1) Organization of care into periods, considering their respective needs along the process; (2) Creation of the Bereavement Professional figure in maternity wards; (3) Adequacy of the institutional environment; (4) Communication of the guidance; (5) Creation of baby memories. We expect that the current project generates additional evidence for improving the mental health of women and families that experience a perinatal loss. Trial registration RBR-3cpthr For many couples, getting pregnant does not only mean carrying a baby, but also having a child. Most of the time, the couple has already made many plans and has expectations towards the child. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. In Brazilian culture, validating this traumatic grief is very difficult, especially when it happens too soon. The barriers can be noticed not only by the way society deals with the parents' grief, but also when we see the care the grieving families receive from the health care establishment. Creating physical and emotional memories might bring the parents satisfaction regarding the care they receive when a baby dies. These memories can be built when there is good communication throughout the care received; shared decisions; the chance to see and hold the baby, as well as collect memories; privacy and continuous care during the whole process, including when there is a new pregnancy, childbirth and postnatal period. With this in mind, among the most important factors are the training of health staff and other professionals, the preparation of the maternity ward to support bereaved families and the continuous support to the professionals involved in the bereavement. This article proposes guidelines to support the families who are experiencing stillbirth and neonatal death. It may be followed by childbirth professionals (nurses, midwives, obstetricians and employees of a maternity ward), managers, researchers, policymakers or those interested in developing specific protocols for their maternity wards.

Objective: To explore parents' lived experiences of care and support following stillbirth in urban and rural health facilities., Design: Qualitative, interpretative, guided by Heideggerian phenomenology., Setting: Nairobi and Western Kenya, Kampala and Central Uganda., Sample: A purposive sample of 75 women and 59 men who had experienced the stillbirth of their baby (≤1 year previously) and received care in the included facilities., Methods: In-depth interviews, analysed using Van Manen's reflexive approach., Results: Three main themes were identified; parents described devastating impacts and profound responses to their baby's death. Interactions with health workers were a key influence, but poor communication, environmental barriers and unsupportive facility policies/practices meant that needs were often unmet. After discharge, women and partners sought support in communities to help them cope with the death of their baby but frequently encountered stigma engendering feelings of blame and increasing isolation., Conclusions: Parents in Kenya and Uganda were not always treated with compassion and lacked the care or support they needed after the death of their baby. Health workers in Kenya and Uganda, in common with other settings, have a key role in supporting bereaved parents. There is an urgent need for context and culturally appropriate interventions to improve communication, health system and community support for African parents., Tweetable Abstract: Health-system response and community support for parents after stillbirth in Kenya and Uganda are inadequate., (© 2020 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetricians and Gynaecologists.)

Stillbirth is a major public health problem with an enormous mortality burden and psychosocial impact on parents, families and the wider community both globally and in Australia. In 2015, Australia's late gestation stillbirth rate was over 30% higher than that of the best-performing countries globally, highlighting the urgent need for action. We present an overview of the foundations which led to the establishment of Australia's NHMRC Centre of Research Excellence in Stillbirth (Stillbirth CRE) in 2017 and highlight key activities in the following areas: Opportunities to expand and improve collaborations between research teams; Supporting the conduct and development of innovative, high quality, collaborative research that incorporates a strong parent voice; Promoting effective translation of research into health policy and/or practice; and the Regional and global work of the Stillbirth CRE. We highlight the first-ever Senate Inquiry into Stillbirth in Australia in 2018. These events ultimately led to the development of a National Stillbirth Action and Implementation Plan for Australia with the aims of reducing stillbirth rates by 20% over the next five years, reducing the disparity in stillbirth rates between advantaged and disadvantaged communities, and improving care for all families who experience this loss., (Copyright © 2020 Australian College of Midwives. All rights reserved.)

Stillbirth is a tragedy that can leave parents feeling powerless and vulnerable. Respectful and supportive bereavement care is essential to reducing adverse psychosocial impact. Initiatives of the Australian Centre of Research Excellence in Stillbirth are designed to improve care after stillbirth. At their heart are the voices of perinatally bereaved parents and support organisations and shared decision making between parents and health care providers. Priorities in future perinatal bereavement care research include ensuring appropriate care for population groups who experience higher rates of stillbirth and addressing implementation challenges to best practice in respectful and supportive bereavement care within our health systems., (Copyright © 2020 Australian College of Midwives. All rights reserved.)

Background: Stillbirth is a major global concern. However, most research has been conducted in high-income countries. Understanding of the experience and management of stillbirth in low-middle income countries is needed., Objective: This qualitative study explored health professionals' experiences of providing stillbirth care in the Lao People's Democratic Republic, a lower-middle-income country in South-East Asia., Methods: In-depth interviews were conducted with 33 health professionals (doctors, midwives and nurses) and thematic analysis was undertaken., Results: All participants acknowledged stillbirth as a concern, but its incidence and causes were largely undocumented and unknown. A lack of training in managing stillbirth left health professionals often ill-equipped to support mothers and provide responsive care. Social stigma surrounds stillbirth, meaning mothers found limited support or opportunities to openly express their grief., Conclusions: Better awareness of stillbirth causes could promote more positive experiences for healthcare providers and parents and more responsive healthcare. This requires improved training for healthcare professionals and awareness raising in the wider community.

Objective: To explore the healthcare experiences of parents whose baby died either before, during or shortly after birth between 20 +0 and 23 +6  weeks of gestation in order to identify practical ways to improve healthcare provision., Design: Qualitative interview study., Setting: England through two parent support organisations and four NHS Trusts., Sample: A purposive sample of parents., Methods: Thematic analysis of semi-structured in-depth narrative interviews., Main Outcome Measures: Parents' healthcare experiences., Results: The key overarching theme to emerge from interviews with 38 parents was the importance of the terminology used to refer to the death of their baby. Parents who were told they were 'losing a baby' rather than 'having a miscarriage' were more prepared for the realities of labour, the birth experience and for making decisions around seeing and holding their baby. Appropriate terminology validated their loss, and impacted on parents' health and wellbeing immediately following bereavement and in the longer term., Conclusion: For parents experiencing the death of their baby at the margins between miscarriage, stillbirth and neonatal death, ensuring the use of appropriate terminology that reflects parents' preferences is vital. This helps to validate their loss and prepare them for the experiences of labour and birth. Reflecting parents' language preferences combined with compassionate bereavement care is likely to have a positive impact on parents' experiences and improve longer-term outcomes., Tweetable Abstract: Describing baby loss shortly before 24 weeks of gestation as a 'miscarriage' does not prepare parents for labour and birth, seeing their baby and making memories., (© 2020 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetricians and Gynaecologists.)

Background: The World Health Organization, and the 2011 and 2016 Lancet Stillbirth series as well as medical and scientific literature, have all called for stillbirth stigma to be reduced. However, few studies have explored or attempted to conceptualise the meaning of stigma in the context of stillbirth., Aim: To explore the current knowledge surrounding stillbirth stigma, specifically the extent, type and experiences of bereaved parents., Methods: A five-stage scoping review framework was utilised. A search of relevant databases (MedLine, EMBASE, PsychInfo, PsychArticles, and Ovid Emcare) was undertaken with several key words related to 'stillbirth' and 'stigma.' The reference lists of included studies were also searched., Findings: A total of 23 resources met the inclusion criteria for this review. A thematic analysis regarding how stigma was conceptualised and/or experienced within results and/or discussion was employed on these studies. Five over-arching themes, with several sub-themes, were discovered: Type of stigma, identity, silence, bereaved mothers' experiences of stigma in low-income countries and transformation., Discussion: Stillbirth stigma remains an under-researched topic. Few articles conceptualised the experiences of the bereaved parent within a stigma framework. However, examples of bereaved parents enduring stigma were found within the literature. Common stigmatising experiences included, bereaved parents' identities being challenged; and feelings of shame, guilt, and blame after their stillbirth. Stigmatising experiences could be different based on the bereaved parent's cultural background., Conclusion: Further research which attempts to conceptualise stillbirth stigma and explores those experiences from a bereaved parent perspective is needed to help inform stigma reduction strategies., (Copyright © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Death in intrapartum settings poses a paradox for providers, whose expertise may be limited in assisting bereaved women and families facing the trauma of stillbirth. Many providers are familiar with Kübler-Ross' stage theory of grief; however, more recent theories augment her early work in care of bereaved persons. Through an evolving case study of a couple for whom pregnancy ends in stillbirth at term, 4 theories of grief-loss of the assumptive world, the dual process model, continuing bonds, and complicated grief-are presented to assist intrapartum care providers toward more comprehensive understanding of the complexities of grief responses not fully explained by simple stage theory. These 4 theories are not prescriptive, nor are they comprehensive; however, they are highly relevant and foundational for current understanding of responses and needs of bereaved women and families for whom pregnancy ends in death., (© 2020 by the American College of Nurse-Midwives.)

Background: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense., Purpose: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death., Methods: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data., Results: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help.", Implications for Practice: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences., Implications for Research: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.

Background: Best practice in perinatal bereavement care suggests offering parents the opportunity to spend time with their baby. Cold cots facilitate this purpose by reducing the deterioration of the body and evidence indicates their wide availability in maternity and neonatal units in the UK. This study aimed to examine healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby., Methods: A qualitative cross-sectional study was designed. In-depth, semi-structured interviews were conducted with 33 maternity and neonatal unit healthcare professionals who worked across three UK hospital settings. Data were analysed using inductive reflexive thematic analysis., Results: Findings revealed that staff had predominantly positive views about, and experiences of, using a cold cot. The technology was highly valued because it facilitated parents to spend time with their baby and participants reported that it was generally easy to use and smoothly embedded into the clinical environment. Cold cots were deemed useful when mothers were medically unwell and needed time to recover, when parents struggled to say goodbye to their baby, wished to take the baby home, or wanted their baby to stay in the unit instead of going straight to the mortuary. The use of technology was further perceived to be relevant in scenarios of unexpected loss, post-mortem examination and with babies of late gestations or neonates. Despite staff expressing comfort with the delay of visual and olfactory body changes, the coldness of the baby's body that was accelerated with the use of a cold cot was a major concern as it connoted and possibly exacerbated the reality of death., Conclusions: Cold cots allow the materialisation of modern bereavement care practices that recognise the importance of continuing bonds with the deceased that is made possible through the creation of memories within an extremely restricted timeframe. Simultaneously, the body coldness concentrates the ambivalence toward an inherently paradoxical death, that of a baby. Training in perinatal bereavement care, including the use of cold cots, would help staff support bereaved parents whilst acknowledging dilemmas and managing contradictions encompassed in death at the time or near the time of birth.

Background: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce., Aim: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth., Methods: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries., Findings: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered., Conclusion: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women., (Copyright © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Background: Bereaved parents experience higher rates of depressive and post-traumatic stress symptoms after the stillbirth of a baby than after live-birth. Yet, these effects remain underreported in the literature and, consequently, insufficiently addressed in health provider education and practice. We conducted a participatory based study to explore the experiences of grieving parents during their interaction with health care providers during and after the stillbirth of a baby., Methods: This community-based participatory study utilized four focus groups comprised of twenty-seven bereaved parents (44% fathers). Bereaved parents conceptualized the study, participating at all stages of research, analyses, and drafting. Data were reduced into a main theme and subthemes, then broad-based member checked to ensure fidelity and nuances within themes., Results: The major theme that emerged centered on provider acknowledgement of the baby as an irreplaceable individual. Subthemes reflected 1) acknowledgement of parenthood and grief, 2) recognition of the traumatic nature of stillbirth, and 3) acknowledgement of enduring grief coupled with access to support. It was important that providers realized how grief was experienced within health care and social support systems, concretized by their desire for long-term, specialized support., Conclusions: Both mothers and fathers feel that acknowledgement of their baby as an individual, their parenthood, and their enduring traumatic grief by healthcare providers are key elements required in the process of initiating immediate and ongoing care after the stillbirth of a baby.

Research into stillbirth memento photography shows the practice to be welcomed by the bereaved. The visual attributes and content of stillbirth memento photographs are yet to be rigorously analysed however, representing a significant gap in current understanding. This study seeks to address this. 51 professionally produced stillbirth memento photographs have been sampled, anonymised and analysed. Using a content analysis methodology, imagery was characterised by aesthetic and semantic properties. The results were then cross-referenced against existing stillbirth scholarship, data from an interview study with people who had experienced pregnancy loss, and against image theories. The content analysis identified four distinctive image tropes in the sample: images of mother, father and baby, with the baby being held and the parents touching; macro photography of the baby; portrait photographs of babies lying alone with little or no physical trauma evident; and images of a parent, usually the mother, cradling the baby. The analysis also identified specific attributes, present across the sample, that appeared significant and distinctive of stillbirth memento photography. These were: (1) stylistic attributes , (2) acknowledgement and validation, (3) identity construction , (4) ambiguity and (5) e mbodiment .

Background: Echoing international trends, the most recent United Kingdom reports of infant and maternal mortality found that pregnancies to women with social risk factors are over 50% more likely to end in stillbirth or neonatal death and carry an increased risk of premature birth and maternal death. The aim of this realist synthesis was to uncover the mechanisms that affect women's experiences of maternity care., Methods: Using realist methodology, 22 papers exploring how women with a wide range of social risk factors experience maternity care in the United Kingdom were included. The data extraction process identified contexts (C), mechanisms (M), and outcomes (0)., Results: Three themes, Resources, Relationships, and Candidacy, overarched eight CMO configurations. Access to services, appropriate education, interpreters, practical support, and continuity of care were particularly relevant for women who are unfamiliar with the United Kingdom system and those living chaotic lives. For women with experience of trauma, or those who lack a sense of control, a trusting relationship with a health care professional was key to regaining trust. Many women who have social care involvement during their pregnancy perceive health care services as a system of surveillance rather than support, impacting on their engagement. This, as well as experiences of paternalistic care and discrimination, could be mitigated through the ability to develop trusting relationships., Conclusions: The findings provide underlying theory and practical guidance on how to develop safe services that aim to reduce inequalities in women's experiences and birth outcomes., (© 2019 The Authors. Birth published by Wiley Periodicals, Inc.)

Objective: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake., Design: Mixed methods study., Setting: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations., Sample: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents., Methods: Cross-sectional survey and qualitative semi-structured telephone interviews., Main Outcome Measures: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods., Results: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy., Conclusion: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care., Tweetable Abstract: Mixed methods UK study finds less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience., (© 2018 The Authors BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetricians and Gynaecologists.)

Background: Pregnancy and infant loss has a pervasive impact on families, health systems, and communities. During and after loss, compassionate, individualized, and skilled support from professionals and organizations is important, but often lacking. Historically, little has been known about how families in Ontario access existing care and supports around the time of their loss and their experiences of receiving such care., Methods: An online cross-sectional survey, including both closed-ended multiple choice questions and one open-ended question, was completed by 596 people in Ontario, Canada relating to their experiences of care and support following pregnancy loss and infant death. Quantitative data were analyzed descriptively using frequency distributions. Responses to the one open-ended question were thematically analyzed using a qualitative inductive approach., Results: The majority of families told us that around the time of their loss, they felt they were not adequately informed, supported and cared for by healthcare professionals, and that their healthcare provider lacked the skills needed to care for them. Almost half of respondents reported experiencing stigma from providers, exacerbating their experience of loss. Positive encounters with care providers were marked by timely, individualized, and compassionate care. Families indicated that improvements in care could be made by providing information and explanations, discharge and follow-up instructions, and through discussions about available supports., Conclusions: Healthcare professionals can make a positive difference in how loss is experienced and in overall well-being by recognizing the impact of the loss, minimizing uncertainty and isolation, and by thoughtfully working within physical environments often not designed for the experience of loss. Ongoing supports are needed and should be tailored to parents' changing needs. Prioritizing access to specialized education for professionals providing services and care to this population may help to reduce the stigma experienced by bereaved families.

Since 2008, upon presentation of a medical certificate attesting to birth, parents are able to request a stillbirth certificate and the registration of their baby in the family record book, and to choose his or her funeral. In addition to the acknowledgement of the memory of this stillborn baby, certain rights are granted, subject to conditions, to the parents, such as maternity and paternity leave, pension entitlements and the birth allowance., (Copyright © 2018 Elsevier Masson SAS. All rights reserved.)

Background: Stillbirth has a profound impact on women, families, and healthcare workers. The burden is highest in low- and middle-income countries (LMICs). There is need for respectful and supportive care for women, partners, and families after bereavement., Objective: To perform a qualitative meta-summary of parents' and healthcare professionals' experiences of care after stillbirth in LMICs., Search Strategy: Search terms were formulated by identifying all synonyms, thesaurus terms, and variations for stillbirth. Databases searched were AMED, EMBASE, MEDLINE, PsychINFO, BNI, CINAHL., Selection Criteria: Qualitative, quantitative, and mixed method studies that addressed parents' or healthcare professionals' experience of care after stillbirth in LMICs., Data Collection and Analysis: Studies were screened, and data extracted in duplicate. Data were analysed using the Sandelowski meta-summary technique that calculates frequency and intensity effect sizes (FES/IES)., Main Results: In all, 118 full texts were screened, and 34 studies from 17 countries were included. FES range was 15-68%. Most studies had IES 1.5-4.5. Women experience a broad range of manifestations of grief following stillbirth, which may not be recognised by healthcare workers or in their communities. Lack of recognition exacerbates negative experiences of stigmatisation, blame, devaluation, and loss of social status. Adequately developed health systems, with trained and supported staff, are best equipped to provide the support and information that women want after stillbirth., Conclusions: Basic interventions could have an immediate impact on the experiences of women and their families after stillbirth. Examples include public education to reduce stigma, promoting the respectful maternity care agenda, and investigating stillbirth appropriately., Tweetable Abstract: Reducing stigma, promoting respectful care and investigating stillbirth have a positive impact after stillbirth for women and families in LMICs., (© 2018 Royal College of Obstetricians and Gynaecologists.)

Practices around the care of stillborn babies have evolved considerably over the last 15 years. Perinatal bereavement care requires a team approach to support the parents experiencing this ordeal. The place of rituals is important as is the personalisation of the care. The humanity which surrounds such moments constitutes the foundation on which the future equilibrium of these bereaved families will be based., (Copyright © 2018. Published by Elsevier Masson SAS.)

The stillbirth of her son prompted this nurse to look inside herself for the tools needed to move forward both personally and professionally. The first tasks were to learn how to trust herself again and find hope for the future. This journey prompted her to create a nonprofit organization, Star Legacy Foundation, that utilizes what she learned, and to expand her definition of what it means to be a health-care professional., (© 2018 Creative Health Care Management.)

Objective: To assess current practices of health care providers (HCPs) caring for women experiencing a stillbirth and to explore their needs for training to better support bereaved families., Design: Nationwide cross-sectional survey. The main outcome measures were the evaluation of HCPs cognition, emotions and behaviours with regard to the care of women with a stillbirth care, as well as their compliance with international guidelines., Participants: 750 HCPs, in 11 Italian hospitals, were administered a multiple-choice questionnaire., Findings: The response rate was 89.9%; the majority (94.1%) were female, with a mean age of 37.6 (SD = 10.4) years. Midwives were the most represented (72.8%). Half of the respondents recommended immediate birth; only 55% routinely bathed and dressed stillborn babies for their parents to see, while 44.4% of HCPs immediately took the babies away without allowing parents to properly say goodbye to them. More than half felt inadequate and some even reported having failed to provide support to the family when caring for a woman with stillbirth in the past. The need for professional training courses was expressed by 90.2%, and three-quarters had never previously attended a course on perinatal bereavement care. When answers by Italian HCPs are systematically evaluated with reference to international guidelines, the results were very poor with only 27.9% of respondents reported having created memories of the baby and less than 3% complied with all recommendations in the areas of respect for baby and parents, appropriate birth options, and aftercare., Key Conclusions: There is a substantial gap between the standards of care defined by international guidelines and the practices currently in place in Italy. Italian HCPs feel an urgent need to be offered professional training courses to better meet the needs of grieving families., Implication for Practice: Perinatal HCPs should be aware of their pivotal role in helping bereaved parents after stillbirth and perinatal loss, and seek appropriate training., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Objective: To investigate the views of a range of hospital based health professionals and health care staff involved in the management of stillbirth., Study Design: A qualitative pilot study informed by grounded theory conducted in three hospital trusts in the North East of England. In total, 21 consultant obstetricians, 3 trainees (including 1 senior trainee), 29 midwives, 3 midwife sonographers and 4 chaplains took part in six focus groups and two semi-structured interviews., Results: Two different approaches in stillbirth management could be detected in our study. One approach emphasised the existing evidence-base and patient directed choice whilst the other emphasised tradition and profession-directed care. These differences were particularly apparent in choices over mode of delivery, and the location of women as well as the time interval between diagnosis of an IUD and delivery. The existence of these two approaches was underscored by a lack of high quality evidence., Conclusion: Robust, high quality evidence is needed regarding the longer term psychological and emotional sequelae of different modes of delivery and varying time intervals and locations of women between diagnosis and delivery in stillbirth. If the competing discourses demonstrated here are found elsewhere then such need to be considered in any future policy development, evidence implementation and training programmes., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Background: The objective of the study was to evaluate practices in Spanish hospitals after intrauterine death in terms of medical/ technical care and bereavement support care., Methods: A cross-sectional descriptive study using an online self-completion questionnaire. The population was defined as women who had experienced an intrauterine fetal death between sixteen weeks and birth, either through spontaneous late miscarriage/stillbirth or termination of pregnancy for medical reasons. Respondents were recruited through an online advertisement on a stillbirth charity website and social media. The analysis used Pearson's chi-squared (p ≤ 0.05) test of independence to cross-analyse for associations between objective measures of care quality and independent variables., Results: Responses from 796 women were analysed. Half of the women (52.9%) had postmortem contact with their baby. 30.4% left the hospital with a least one linking object or a photograph. In 35.8% of cases parents weren't given any option to recover the body/remains. 22.9% of births ≥26 weeks gestation were by caesarean, with a significant (p < 0.001) difference between public hospitals (16.8%) and private hospitals (41.5%). 29.3% of respondents were not accompanied during the delivery. 48.0% of respondents recalled being administered sedatives at least once during the hospital stay. The autopsy rate in stillbirth cases (≥ 20 weeks) was 70.5% and 44.4% in cases of termination of pregnancy (all gestational ages). Consistent significant (p < 0.05) differences in care practices were found based on gestational age and type of hospital (public or private), but not to other variables related to socio-demographics, pregnancy history or details of the loss/death. Intrauterine deaths at earlier gestational ages received poorer quality care., Conclusions: Supportive healthcare following intrauterine death is important to women's experiences in the hospital and beneficial to the grief process. Many care practices that are standard in other high-income countries are not routine in Spanish hospitals. Providing such care is a relatively new phenomenon in the Spanish health system, the results provide a quality benchmark and identify a number of areas where hospitals could make improvements to care practices that should have important psychosocial benefits for women and their families.

Objective: To understand challenges in care after stillbirth and provide tailored solutions., Design: Multi-centre case study., Setting: Three maternity hospitals., Population: Parents with a stillborn baby, maternity staff., Methods: Thematic analysis of parent interviews and staff focus groups and service provision investigation., Outcomes: 1 Themes; 2 Triangulation matrix; 3 Recommendations., Results: Twenty-one women, 14 partners, and 22 staff participated. Service Provision: Care for parents after stillbirth varies excessively; there are misconceptions; post-mortem does not delay follow-up., Presentation: Women 'do not feel right' before stillbirth; their management is haphazard and should be standardised., Diagnosis: Stillbirth is an emergency for parents but not always for staff; communication can seem cold; well-designed bereavement space is critical. Birth: Staff shift priorities to mother and future, but for parents their baby is still a baby; parents are not comfortable with staff recommending vaginal birth as the norm; there are several reasons why parents ask for a caesarean; better care involves clear communication, normal behaviour, and discussion of coping strategies. Post-mortem: Parents are influenced by discussions with staff. Staff should 'sow seeds', clarify its respectful nature, delineate its purpose, and explain the timescale., Follow-Up: It is not standardised; parents wish to see their multi-professional team., Conclusions: There is unacceptable variation in care after stillbirth, and insensitive interactions between staff and bereaved parents. Understanding parents' needs, including why they ask for caesarean birth, will facilitate joint decision-making. Every bereaved parent is entitled to good, respectful care., Tweetable Abstract: Care too varied & interactions often insensitive after stillbirth; national pathway & training urgently needed PLAIN LANGUAGE SUMMARY: Why and how was the study carried out? Previous studies have shown that improving care after stillbirth is important for families. We investigated the opinions of bereaved parents and maternity staff to find ways to improve care. At three hospitals in 2013, all women who experienced a stillbirth were invited to an interview along with their partners. Thirty-five parents of 21 babies agreed to participate. Twenty-two obstetricians and midwives took part in focus group discussions. What were the main findings? Care was often not as good as it should and could be. Communication with parents was not always as sensitive as they would have liked because staff did not have appropriate training. Some women reported they did not 'feel right' before going to hospital. Once they arrived, there was no standard approach to how care was given. Sometimes there were long delays before the death of the baby was confirmed and action was taken. After it had been confirmed that the baby had died, staff focussed on the mothers' needs, but the parents' priorities were still with their baby. There were several reasons why parents asked for a caesarean birth that staff had not considered. Staff influenced parents' decisions about post-mortem examinations. Parents found it helpful when staff explained the respectful nature and purpose of the examination. After discharge from hospital, there was no consistent plan for how follow-up care would be given. Parents would have liked more information about their next hospital appointment. What are the limitations of the work? The parents interviewed depended on their memories of the details of the care, which happened some time ago. In staff group discussions, junior doctors may not have spoken openly because there were senior doctors present. Further research is necessary to understand and improve care globally. What is the implication for parents? Every bereaved parent is entitled to the best possible care after stillbirth, but some do not get good care. Parents and staff made suggestions that can help to develop processes for how care is given after stillbirth. These suggestions can also inform staff training, so that every single parent is treated respectfully and participates in decision making., (© 2017 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetricians and Gynaecologists.)

Objective: To assess the frequency of additional care, and parents' perceptions of quality, respectful care, in pregnancies subsequent to stillbirth., Design: Multi-language web-based survey., Setting: International., Population: A total of 2716 parents, from 40 high- and middle-income countries., Methods: Data were obtained from a broader survey of parents' experiences following stillbirth. Data were analysed using descriptive statistics and stratified by geographic region. Subgroup analyses explored variation in additional care by gestational age at index stillbirth., Main Outcome Measures: Frequency of additional care, and perceptions of quality, respectful care., Results: The majority (66%) of parents conceived their subsequent pregnancy within 1 year of stillbirth. Additional antenatal care visits and ultrasound scans were provided for 67% and 70% of all parents, respectively, although there was wide variation across geographic regions. Care addressing psychosocial needs was less frequently provided, such as additional visits to a bereavement counsellor (10%) and access to named care provider's phone number (27%). Compared with parents whose stillbirth occurred at ≤ 29 weeks of gestation, parents whose stillbirth occurred at ≥ 30 weeks of gestation were more likely to receive various forms of additional care, particularly the option for early delivery after 37 weeks. Around half (47-63%) of all parents felt that elements of quality, respectful care were consistently applied, such as spending enough time with parents and involving parents in decision-making., Conclusions: Greater attention is required to providing thoughtful, empathic and collaborative care in all pregnancies following stillbirth. Specific education and training for health professionals is needed., Tweetable Abstract: More support for providing quality care in pregnancies after stillbirth is needed., Plain Language Summary: Study rationale and design More than two million babies are stillborn every year. Most parents will conceive again soon after having a stillborn baby. These parents are more likely to have another stillborn baby in the next pregnancy than parents who have not had a stillborn baby before. The next pregnancy after stillbirth is often an extremely anxious time for parents, as they worry about whether their baby will survive. In this study we asked 2716 parents from 40 countries about the care they received during their first pregnancy after stillbirth. Parents were recruited mainly through the International Stillbirth Alliance and completed on online survey that was available in six languages. Findings Parents often had extra antenatal visits and extra ultrasound scans in the next pregnancy, but they rarely had extra emotional support. Also, many parents felt their care providers did not always listen to them and spend enough time with them, involve them in decisions, and take their concerns seriously. Parents were more likely to receive various forms of extra care in the next pregnancy if their baby had died later in pregnancy compared to earlier in pregnancy. Limitations In this study we only have information from parents who were able and willing to complete an online survey. Most of the parents were involved in charity and support groups and most parents lived in developed countries. We do not know how well the findings relate to other parents. Finally, our study does not include parents who may have tried for another pregnancy but were not able to conceive. Potential impact This study can help to improve care through the development of best practice guidelines for pregnancies following stillbirth. The results suggest that parents need better emotional support in these pregnancies, and more opportunities to participate actively in decisions about care. Extra support should be available no matter how far along in pregnancy the previous stillborn baby died., (© 2016 Royal College of Obstetricians and Gynaecologists.)

Aims and Objectives: To explore couples' perceptions of the effects of perinatal loss on their marital relationship, social support and grief 1 year postloss, and analyse what factors changed the severity of their grief., Background: Perinatal losses are traumatic events in the lives of families and can have serious long-term consequences for the psychological health of parents and any subsequent children., Design: A prospective follow-up study., Methods: We recruited, at a teaching hospital in southern Taiwan, a convenience sample of 30 couples whose babies either miscarried or were stillborn. At 1 month (T1), 3 months (T2), 6 months (T3) and 1 year (T4) after the pregnancy loss, all participants completed four questionnaires. To analyse the changing status of their grief and its related factors, we used a generalised estimating equation (GEE) to account for correlations between repeated observations., Results: Postbereavement grief levels fell over the four time-points. Mothers reported feeling more grief than did the fathers. Couples with a history of infertility, no religious beliefs or no living children before the loss felt more grief from a perinatal miscarriage or stillbirth. Furthermore, couples reported more grief if their marital satisfaction level was low, if their socioemotional support from husband's parents was low or if they had never participated in a ritual for their deceased baby., Conclusions: Six months postloss is the crucial period for bereaved parents after a perinatal loss. Being a mother, having no previous living children and low-level socioemotional support from the husband's parents are significant high-risk factors for a high level of grief 1 year after perinatal death., Relevance to Clinical Practice: We recommend that health professionals increase their ability to identify the factors that psychologically affect postloss grief. Active postloss follow-up programmes should focus on these factors to offer specific support and counselling., (© 2017 John Wiley & Sons Ltd.)

Background: Following a perinatal death, a formal standardised multi-disciplinary review should take place, to learn from the death of a baby and facilitate improvements in future care. It has been recommended that bereaved parents should be offered the opportunity to give feedback on the care they have received and integrate this feedback into the perinatal mortality review process. However, the MBRRACE-UK Perinatal Confidential Enquiry (2015) found that only one in 20 cases parental concerns were included in the review. Although guidance suggests parental opinion should be sought, little evidence exists on how this may be incorporated into the perinatal mortality review process. The purpose of the PARENTS study was to investigate bereaved parents' views on involvement in the perinatal mortality review process., Methods: A semi-structured focus group of 11 bereaved parents was conducted in South West England. A purposive sampling technique was utilised to recruit a diverse sample of women and their partners who had experienced a perinatal death more than 6 months prior to the study. A six-stage thematic analysis was followed to explore parental perceptions and expectations of the perinatal mortality review process., Results: Four over-arching themes emerged from the analysis: transparency; flexibility combined with specificity; inclusivity; and a positive approach. It was evident that the majority of parents were supportive of their involvement in the perinatal mortality review process and they wanted to know the outcome of the meeting. It emerged that an individualised approach should be taken to allow flexibility on when and how they could contribute to the process. The emotional aspects of care should be considered as well as the clinical care. Parents identified that the whole care pathway should be examined during the review including antenatal, postnatal, and neonatal and community based care. They agreed that there should be an opportunity for parents to give feedback on both good and poor aspects of their care., Conclusion: Parents were unaware that a review of their baby's death took place in the hospital. Parental involvement in the perinatal mortality review process would promote an open culture in the healthcare system and learning from adverse events including deaths. Further research should focus on designing and evaluating a perinatal mortality review process where parental feedback will be integral.

Stillbirth is recognized as one of the most challenging experiences of bereavement raising significant spiritual and theological questions. Semi-structured qualitative interviews were conducted with bereaved parents cared for in a tertiary maternity hospital to explore the spiritual impact of stillbirth. Data were analysed using interpretative phenomenological analysis. Stillbirth was identified as an immensely challenging spiritual and personal experience with enduring impact for parents. The superordinate themes to emerge were searching for meaning, maintaining hope and questioning core beliefs. Most parents reported that their spiritual needs were not adequately addressed while in hospital. The faith of all parents was challenged with only one parent experiencing a stronger faith following stillbirth. This study reveals the depth of spiritual struggle for parents bereaved following stillbirth with a recommendation that spiritual care is provided as part of comprehensive perinatal bereavement care in the obstetric setting.

Objective: To identify which quality indicators (QI) predict patient satisfaction., Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care. Descriptive analyses and logistic regression identified relationships among variables., Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4-2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4-2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4-2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time., Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.

Communicating bad news in obstetrics is challenging. This study explores the impact of how bad news was communicated to parents following a diagnosis of stillbirth. Qualitative in-depth interviews were conducted with 12 mothers and 5 fathers, bereaved following stillbirth at a tertiary maternity hospital where the perinatal mortality rate is 5.2/1000. Data were analysed using Interpretative Phenomenological Analysis. How the diagnosis of stillbirth was communicated had a profound and lasting impact on parents. Dominant superordinate themes were Language used, Sensitivity and Diversionary techniques. Parents recalled in detail where and how bad news was broken and language used. Diversionary techniques created a sense of mistrust especially when parents felt information was being withheld. Bereaved parents valued privacy at the time of diagnosis of stillbirth.This study highlights the importance of language, sensitivity and environment where clinicians can learn from the experiences of bereaved parents who value open, sensitive and honest communication. The results of this study highlight the importance of patient-focused communication training for clinicians.

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., (Copyright © 2016 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Background: Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors., Method: The medical and bereavement records of all neonatal deaths were studied from January 2006 to December 2011. Data collected included parent and baby characteristics, mode of death, consent for autopsy and bereavement follow-up. The categorical data were compared by chi-square or Fisher's exact test and continuous data by Wilcoxon signed-rank test; a multivariable regression analysis was performed using STATA 12.0., Results: The neonatal deaths of 297 babies (182 in NNU1 and 115 in NNU2) with full datasets were analysed. Baby characteristics were similar between units except for lower median gestational age in NNU1 (p = 0.03). Significantly more NNU1 parents were non-Caucasian (p < 0.01), from lower socio-economic status (p = 0.01) and had previous stillbirth/miscarriage (p = 0.03). More babies had care withdrawn in NNU2 (p < 0.01). A significantly higher proportion of parents from NNU1 (61 %) attended bereavement follow-up compared to NNU2 (34 %; p < 0.01). On multivariable analysis, significantly more parents who were married or co-habiting (p = 0.02) and consented for an autopsy (p = 0.01) attended bereavement services., Conclusion: Uptake of bereavement services varied between the two NNUs, which could be due to differences in the ethnic and socio-economic mix of the population. Significantly more parents who were married or co-habiting, or consented for autopsy, attended bereavement follow up services.

Background: Pregnancy after stillbirth or neonatal death is an emotionally challenging life-event for women and adequate emotional support during pregnancy should be considered an essential component of quality maternity care. There is a lack of evidence surrounding the role of UK maternity services in meeting womens' emotional and psychological needs in subsequent pregnancies. This study aimed to gain an overview of current UK practice and womens' experiences of care in pregnancy after the death of a baby., Methods: Online cross-sectional surveys, including open and closed questions, were completed on behalf of 138 United Kingdom (UK) Maternity Units and by 547 women who had experience of UK maternity care in pregnancy after the death of a baby. Quantitative data were analysed descriptively using SPSS software. Open textual responses were managed manually and analysed using the framework method., Results: Variable provision of care and support in subsequent pregnancies was identified from maternity unit responses. A minority had specific written guidance to support care delivery, with a focus on antenatal surveillance and monitoring for complications through increased consultant involvement and technological surveillance (ultrasound/cardiotocography). Availability of specialist services and professionals with specific skills to provide emotional and psychological support was patchy. There was a lack of evaluation/dissemination of developments and innovative practice. Responses across all UK regions demonstrated that women engaged early with maternity care and placed high value on professionals as a source of emotional support. Many women were positive about their care, but a significant minority reported negative experiences. Four common themes summarised womens' perceptions of the most important influences on quality and areas for development: sensitive communication and conduct of staff, appropriate organisation and delivery of services, increased monitoring and surveillance and perception of standard vs. special care., Conclusions: These findings expose likely inequity in provision of care for UK parents in pregnancy after stillbirth or neonatal death. Many parents do not receive adequate emotional and psychological support increasing the risk of poor health outcomes. There is an urgent need to improve the evidence base and develop specific interventions to enhance appropriate and sensitive care pathways for parents.

Background: 2.7 million babies were stillborn in 2015 worldwide; behind these statistics lie the experiences of bereaved parents. The first Lancet series on stillbirth in 2011 described stillbirth as one of the "most shamefully neglected" areas of public health, recommended improving interaction between families and frontline caregivers and made a plea for increased investment in relevant research., Methods: A systematic review of qualitative, quantitative and mixed-method studies researching parents and healthcare professionals experiences of care after stillbirth in high-income westernised countries (Europe, North America, Australia and South Africa) was conducted. The review was designed to inform research, training and improve care for parents who experience stillbirth., Results: Four thousand four hundred eighty eight abstracts were identified; 52 studies were eligible for inclusion. Synthesis and quantitative aggregation (meta-summary) was used to extract findings and calculate frequency effect sizes (FES%) for each theme (shown in italics), a measure of the prevalence of that finding in the included studies. Researchers' areas of interest may influence reporting of findings in the literature and result in higher FES sizes, such as; support memory making (53%) and fathers have different needs (18%). Other parental findings were more unexpected; Parents want increased public awareness (20%) and for stillbirth care to be prioritised (5%). Parental findings highlighted lessons for staff; prepare parents for vaginal birth (23%), discuss concerns (13%), give options & time (20%), privacy not abandonment (30%), tailored post-mortem discussions (20%) and post-natal information (30%). Parental and staff findings were often related; behaviours and actions of staff have a memorable impact on parents (53%) whilst staff described emotional, knowledge and system-based barriers to providing effective care (100%). Parents reported distress being caused by midwives hiding behind 'doing' and ritualising guidelines whilst staff described distancing themselves from parents and focusing on tasks as coping strategies. Parents and staff both identified the need for improved training (parents 25% & staff 57%); continuity of care (parents 15% & staff 36%); supportive systems & structures (parents 50%); and clear care pathways (parents 5%)., Conclusions: Parents' and healthcare workers' experiences of stillbirth can inform training, improve the provision of care and highlight areas for future research.

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.