Aim: This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England.
Participants: A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6–24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities.
Design: Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified.
Findings: There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified.
Conclusions: This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem. 209
OBJECTIVE: To report on research conducted on men's experiences of grief and loss following stillbirth and neonatal death in high-income, Western countries.
DESIGN: This review was guided by the following research questions: 1. The impact of perinatal death for men 2. The meaning of the loss for a father's sense of identity 3. The extent to which men were able to express grief while supporting their partners and, 4. how men's experience of grief was mediated by the support and care received by health professionals.
DATA SOURCES: We searched the following databases: Medline; PsychINFO; CINAHL to identify relevant articles published from the year 2000 onwards. The searches were run between 1/04/2018 and 8/4/2018.
REVIEW METHODS: A scoping review was conducted of nursing, psychological, medical and social science databases using these key words: fathers' grief, men's grief, perinatal loss and death, stillbirth and neonatal death.
RESULTS: Studies indicated that men reported less intense and enduring levels of psychological outcomes than women but were more likely to engage in avoidance and coping behaviours such as increased alcohol consumption. Men felt that their role was primarily as a 'supportive partner' and that they were overlooked by health professionals.
CONCLUSIONS: Further research is needed on men's experience of grief following perinatal death, especially on their physical and mental well-being.
IMPACT: This review addressed the problem of the lack of knowledge around paternal needs following perinatal death and highlighted areas which researchers could usefully investigate with the eventual aim of improving care for fathers.
La première partie présente les sources de cette étude... La deuxième expose le système d'analyse des données. La troisième dresse une typologie des caractères finaux des noms bouddhistes donnés aux foetus et aux enfants de façon posthume, tandis que la quatrième analyse le type de ces termes finaux bouddhistes employés pour nommer les foetus et les enfants mort-nés. La cinquième partie explique les relations qu'entretient l'âge au décès avec les choix des caractères finaux des noms bouddhistes posthumes et la dernière partie présente les lois et réglementations qui régissent les enterrements.
This chapter looks at stillbirth registration and levels of stillbirth mortality in 19th century Iceland from a Nordic comparative perspective....
In the first part I compare regulations on stillbirth registation and collection on statistics in Iceland with Danemark. The second part discusses the development of stillbirth mortality in both countries. This section also includes a comparison with Sweden.
This meta-synthesis aims to synthesize qualitative evidence from primary studies to better understand the experience of the spirituality of parents and its relationship to adapting following stillbirth. Five electronic databases were systematically searched and the quality of 21 eligible studies was critically appraised. A thematic synthesis revealed two analytical themes: (1) Spiritual suffering following stillbirth; (2) Moving through spirituality to adapt to the loss, each encompassing four descriptive themes. The findings can inform a more culturally and spiritually sensitive approach to care, taking into account the parents’ beliefs, folk customs, religion, values, and spiritual needs.
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.
Dans le deuil périnatal, l’absence de reconnaissance juridique et sociale de l’existence de l’enfant peuvent être des facteurs de risque pour le travail de deuil des parents. La comparaison entre les lois italiennes et françaises montre le rôle joué par les racines laïques et chrétiennes dans la législation. Malgré les différences, dans les deux pays la reconnaissance de l’existence de l’enfant est encore faible. On n’est pas encore en mesure de pourvoir aux besoins des parents, pour lesquels, même sans l’inscription à l’état civil, l’enfant a vraiment existé.
Stillbirth constitutes a unique form of grief related to the death of an unborn child. This study explores the experiences of eight couples who lost a child to stillbirth, from the time they suspected something was wrong to their release from the hospital and beyond. Couples were interviewed conjointly and data were analyzed qualitatively using a phenomenological approach. Analysis revealed themes of positive and negative encounters with hospital staff, grief and loss, relationships with spouse and family, and long-term impacts. Implications for clinicians are discussed, including gender differences in the grief process for fathers and mothers.
Background: When a mother loses a baby after the period of viability, there is no way to fathom her grief, neither any words, nor an explanation. It is an unexpected event. Stillbirth presents a situation where the early activation of the grief process primarily in mother is exacerbated by the circumstances surrounding the loss. It thus becomes imperative for the healthcare providers to evaluate the significance of parent's perception on the loss and the factors contributing to it before the initiation of therapy.
Objective: To evaluate the psychosocial impact of stillbirth among mothers and its contributing factors.
Materials and Methods: A WHO-funded prospective study was conducted in VMMC and Safdarjung Hospital from September 2015 to August 2016 on all women who gave birth to a stillborn baby, using a questionnaire based on EPDS, after taking their written informed consent. Data were entered on the predesigned proforma and analyzed after applying Chi-square test, keeping a null hypothesis value of 15% for all the variables.
Results: Out of the 709 women who delivered stillborn babies, 645 respondents, who willingly consented to participate, were included in the study. There was a significant relationship between psychosocial impact after perinatal loss and support from caregiver and family.
Conclusion: Mothers with stillborn fetuses should be screened for psychosocial impact and offered support when needed. Appropriate counseling by healthcare providers and continued psychosocial and emotional support by family members must be provided.
The purpose of this qualitative study was to discover the coping strategies used by Spanish (European) women to cope with a pregnancy loss. Sixteen women with miscarriages and stillbirths were interviewed. All of the women were Spanish European. The mean age of the women was 35 years, and most were university graduates, married, employed, and with living children. Audio-recorded interviews and field notes were transcribed and then subsequently coded and analyzed in individual or team sessions. Construction and confirmation of the categories and related themes derived from the data was a collaborative process. Two themes emerged regarding the coping strategies used by women: talking and avoiding. This study expands the theoretical model "Multicultural Model of Coping after Pregnancy Loss" and guides health providers regarding interventions used in practice.
Perinatal death has an enduring effect on parents which is altered by their experience of care. However, professionals frequently report feeling underprepared to care for bereaved parents. This study evaluated parents’ and professionals’ experiences of using an audio archive of experiences of perinatal deaths (www.stillbirthstories.org) using a self-reported questionnaire. Eighty-three percent of parents and the public (n = 33) found listening to the archive helpful, with no negative responses. Fifty-four percent stated that it changed how they felt about having a perinatal death, increasing the proportion of respondents who felt supported (12 to 27%) and decreasing the proportion who felt alone and anxious (27 to 15%). All professionals accessing the archive found it helpful, stating it increased empathy and understanding of parents’ emotions which improved confidence that parents’ needs could be met. Archives of real experiences may help parents and professionals after perinatal death. Further research is needed whether such an archive has a wider reach and accessibility than traditional support networks.
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.
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.
Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008 have been analyzed qualitatively. The videos, 70% published by the mother, with an average length of 5.52 minutes, a mean of 2,429,576 views and 2,563 of comments, follow a sort of script: the second part with black and white photos, background music, and religious references. Could the continuous access to the child's technological grave encourage a complicated grief or be a support, given by the interaction with users, limiting the sense of isolation. The parent shows his or her own conceptions about death and, as a modern baptism, presents the child to the whole society. Videos keep child's memory alive and fuel a process of personalization and tenderness in the user.
Les pratiques autour de la prise en charge des enfants nés sans vie ont connu d’importantes modifications depuis ces 15 dernières années. L’accompagnement du deuil périnatal nécessite une dynamique d’équipe pour soutenir les parents qui traversent cette épreuve. La place des rituels est importante ainsi que la personnalisation de la prise en charge. L’humanité qui entoure ces moments constitue le socle sur lequel reposera l’équilibre futur de ces familles endeuillées.
Depuis 2008, sur présentation d’un certificat médical d’accouchement, les parents ont notamment la possibilité de solliciter auprès d’un officier d’état civil, la délivrance d’un acte d’enfant sans vie et l’inscription de leur enfant sur le livret de famille, et de choisir ses obsèques. Au-delà de l’authentification du souvenir de cet enfant né sans vie, certains droits sont conférés, sous conditions, aux parents, à l’instar des congés maternité et paternité, des droits à retraite ou de la prime de naissance.
Être soignant en périnatalité demande de travailler avec l’intime de l’autre et le sien propre. Les enjeux de vie et de mort se côtoient en salle de naissance, ramenant chacun au sens de la vie et des origines. Quand le deuil périnatal s’invite dans le tableau idéalisé de la naissance, le soignant devient le port d’attache auquel les parents s’accrochent pour ne pas sombrer.
PURPOSE: The purpose of this study was to determine the extent to which labor and delivery nurses used the tenets of Swanson's middle-range theory to care for women whose babies were stillborn.
STUDY DESIGN AND METHODS: A secondary analysis of qualitative in-depth interview data from 20 labor and delivery nurses obtained during a recent grounded theory study was conducted using the directed content analysis method. The five caring processes as described in Swanson's theory were used as a priori codes to conduct the analysis.
RESULTS: Nursing care of a woman experiencing a stillbirth included finding a way to connect with her and to understand what she was experiencing (knowing), spending extra time with her (being with), protecting her and preserving her dignity (doing for), providing information and explanations in a clear and methodical manner (enabling), and ensuring that she did not blame herself to facilitate the grieving/healing process (maintaining belief).
CLINICAL IMPLICATIONS: The caring processes outlined in Swanson's theory of caring provide a valuable guide that can be used when caring for women experiencing stillbirth.
OBJECTIVE: To analyze the communication of a child's death and the grief support provided to the women during puerperium.
METHODS: This is a qualitative study performed at a capital of the Northeast region of Brazil. Semi-structured interviews were carried out with 15 women, whose children died from July 2012 to July 2014. The interviews contained questions about the child's death and the grieving process. The content analysis was performed with a thematic approach.
RESULTS: The women expressed the suffering and the anguish of the loss of a child, sometimes aggravated by the way in which the news of death was delivered, and by the lack of support offered in the coping process. Two empirical categories were found: receiving the news of death and going back home empty-handed. The health care teams are not prepared to deliver bad news, nor to give support to women who lose a newborn child. According to the women, the support received from the family and religion helped them in the grieving process.
CONCLUSIONS: The results indicate the need for professional qualification for the delivery of bad news and for grief support. They also showed the need for institutional policies that offer support to the professionals. Besides, the articulation with the primary health care team is imperative for the continuity of care.