Le présent article recense les contributions théoriques et empiriques de la littérature en sciences sociales et en psychologie/psychanalyse sur le sujet du décès/deuil périnatal. Bien que le traitement ait été distinct dans chacune de ces deux littératures, on observe un intérêt convergent pour la question de la non-reconnaissance du décès/deuil périnatal, et son corollaire, les rituels. Cet article s’articule autour de ces deux objets afin de montrer comment ils ont été examinés dans chacune des deux littératures, avant de proposer, en guise de conclusion, des pistes pour poursuivre et complexifier la réflexion sur le sujet.
Death, disease and disaster can inflict anyone, anywhere and at any time. While occurrence of such an event could be absolved of any selective strike, the outcome reflects otherwise. Historical deprivations experienced by certain populations have caused more bereavement and sorrow to them than those who have experienced lesser or no deprivation. Therefore, the process which shapes the factors to yield such a result is important and needs to be understood for any policy suggestions and programmatic inputs. Loss of pregnancy and newborn inflicts sorrow and bereavement across space, time and social labyrinth. The degree of bereavement is likely to reduce with time, but space and social context govern the response to it. Therefore, factors contributing to the differentials vary in their demographic, social and economic characteristics. The loss of pregnancy and newborn remains inadequately addressed. Family and community play a significant role in coping. While the developed countries have institutional structure to address coping with the loss, the South Asian countries rely heavily on the family and the community for such support. The present review examines these trajectories across social groups.
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.
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers.
OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia.
METHODS: Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews.
RESULTS: Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss.
DISCUSSION: While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners' emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.
INTRODUCTION: The analysis of patients' satisfaction with healthcare is recognised as being useful in the evaluation of health outcomes and perceived quality of care. Little is known, however, about how the psychological status of women who experience perinatal complications may affect their perceived satisfaction with care.
METHODS: We assessed healthcare satisfaction in 52 women who had undergone intrauterine surgery during a complicated monochorionic twin pregnancy and examined the influence that fetal loss and sociodemographic, clinical, and psychological factors had on the degree of satisfaction. Data were gathered in an individual interview and through the administration of the Medical Patient Satisfaction Questionnaire, Beck Depression Inventory, and State-Trait Anxiety Inventory. Relationships between variables were analysed using a chi-square test, Spearman's rho, Student's t test, and the Mann-Whitney U test, in accordance with the metric nature of the variables and the assumptions fulfilled.
RESULTS: Age and level of education were not associated with the degree of healthcare satisfaction. Negative but non-significant correlations were observed between the level of satisfaction and symptoms of anxiety and depression. Satisfaction with healthcare was high in the sample as a whole, although it was significantly higher among women who had not experienced fetal loss. There were no differences in satisfaction with services involving direct contact with medical staff, whereas satisfaction with indirect services was lower among women who had experienced perinatal loss.
CONCLUSIONS: Due to the unique characteristics of this population, specialised care teams of both professional healthcare and indirect services are needed. Although administrative aspects of healthcare are regarded as being of secondary importance, this may not be the case with more vulnerable populations.
OBJECTIVES: The aim of this review was to analyze the effectiveness of teaching healthcare professionals in perinatal palliative care, methods of evaluating the teaching, and the teaching strategies used.
DESIGN: An integrative review.
METHODS: A systematic search was conducted for English language peer reviewed publications of any research design via SCOPUS, Medline/PubMed, EBSCOhost, Science Direct, ERIC, Web of Science, Wiley, Nursing Ovid, and ProQuest databases. Fourteen research papers published between 2002 and 2017 that met the selection criteria were included in the review.
FINDINGS: All 14 studies considered perinatal bereavement education to be effective. Eight studies reported statistical improvements in knowledge, security/comfort in providing end-of-life care, or increased perceptions of the emotional care needs of bereaved families, after attending an educational program. Questionnaires or interviews were used to evaluate the educational programs. Innovative teaching strategies, in particular, were evaluated positively (e.g., simulation, discussion, and arts-based methods).
CONCLUSION: Perinatal palliative care education is essential in pregradual education for midwives and neonatal nurses. Other research is vital for finding out the effectiveness of this education for pregraduate nursing students. Perinatal palliative care education programs need to be available in postgraduate education for professionals who encounter perinatal death and bereaved families in hospital and community care.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
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.
Significant changes towards an intimate death take place in the Czech Republic regarding perinatal loss. However, these practices are often initiated by individual actors or civic initiatives. This “intimate presence” of perinatal loss including last rites stands in sharp contrast to absence of structural, institutional changes brought about by politicians or professional organizations towards better hospital or social management of death, bereavement and body disposal. Tensions of expert knowledge and power of biomedical authoritative knowledge form the setting for opposition or negligence coming from the hospital management, birth registers or funeral homes. The article draws on a qualitative sociological inquiry into practices of perinatal loss in the Czech Republic. The fieldwork data entail in-depth interviews with key actors and document analysis inspired by feminist research approach to reproductive loss. The aim is to show and help understand the frictions between emerging more intimate practices of grief, bereavement and last rites related to perinatal loss in the context of Post-Socialist and late-modern paternalised healthcare, medicalisation of life-events and concealment of death. The complexity of Post-Socialist absent or faded away institutionalised humanity regarding death and emerging practices challenging the status quo in perinatal loss treatment open up fruitful field for analytical inquiry.
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.
I will never forget my first perinatal end-of-life case, nearly fifteen years ago. At the time, I was in my second year of MSW education and was selected for a highly coveted internship at one of the nation's foremost children's hospitals.
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OBJECTIVE: Engaging bereaved parents in the review process that examines their care before and after a perinatal death might help parents deal with their grief more effectively and drive improvements in patient safety. The objective of this study is to explore whether healthcare professionals would accept or support parent engagement in the perinatal mortality review process.
DESIGN: Qualitative focus group interviews. Transcripts were analysed with an inductive thematic approach.
SETTING: Two geographically distinct tertiary maternity hospitals in the UK.
PARTICIPANTS: Five focus groups were conducted with clinical staff including midwives, obstetricians, neonatologists, nursing staff and chaplaincy services.
RESULTS: Twenty-seven healthcare professionals unanimously agreed that parents' involvement in the perinatal mortality review process is useful and necessary. Six key themes emerged including: parental engagement; need for formal follow-up; critical structure of perinatal mortality review meeting; coordination and streamlining of care; advocacy for parents including role of the bereavement care lead; and requirement for training and support for staff to enable parental engagement.
CONCLUSIONS: Healthcare professionals strongly advocated engaging bereaved parents in the perinatal mortality review: empowering parents to ask questions, providing feedback on care, helping generate lessons and providing them with the opportunity to discuss a summary of the review conclusions with their primary healthcare professional contact. The participants agreed it is time to move on from 'a group of doctors reviewing notes' to active learning and improvement together with parents, to enable better care and prevention of perinatal death.
Often referred to as miscarriage, Early Pregnancy Loss (EPL) is the spontaneous death of a fetus experienced within the first 20 weeks of gestation and is the most common complication in pregnancy. Symptoms of an impending EPL are routinely managed in the Emergency Department (ED). EPL can have a substantial impact on women, potentially leading to psychological and emotional health issues and risks to future pregnancies. Despite the high prevalence of EPL, many women suffer in silence due to the common societal belief that EPL are insignificant. Many women experience EPL as an ambiguous loss and are at risk for disenfranchised grief. Compassionate, patient-centred care has been identified by women as an essential and often missing aspect of ED care and can have a profound impact on the overall well-being of women after EPL. Social workers play a critical role in the ED given that they prioritize the psychosocial well-being of patients in a system that is structured to primarily address trauma care. In an effort to reduce the psychological impact and complicated grief reactions of women experiencing EPL, specific recommendations for social work intervention to address the individual needs of women experiencing EPL in the ED are presented. These include acknowledging the loss, providing psychoeducation, honouring the loss, assessing resources, referral and additional information, and building capacity in the ED.
The purpose of this study was to determine the effect of the Grief Support Program on the bereavement of parents whose babies had died. The sample consisted of 77 couples. The data was collected by the Texas Revised Inventory of Grief and the Coping Strategies Inventory. The intervention group was offered before, immediately after, and a month after death of their baby in accordance with the Grief Support Program guideline. The Grief Support Program did not affect grief intensity in the short term but had a positive effect 1 year later.
Ces dernières années, les soins palliatifs en maternité se sont beaucoup développés. Cela est dû à l’évolution du cadre législatif, de la médecine et des demandes de nombreux parents, face à un diagnostic létal durant la grossesse, de poursuivre celle-ci et d’accompagner leur enfant à la naissance. En parallèle, la prise en charge, en réanimation néonatale, de l’extrême prématurité, s’est grandement améliorée. Différentes situations peuvent être concernées par la mise en place de soins palliatifs en maternité. Cet accompagnement spécifique comprend des enjeux importants.
Despite the high rate of infant mortality in Ghana, few studies have explored the maternal experience of infant loss and the perinatal grieving process. As part of a larger study that interviewed 153 mothers with a sick infant, this 1-year follow-up study reinterviewed eight mothers from the original cohort whose infant died since the study began. Mothers were queried about mental health, coping, and cultural issues related to the loss. Mothers were often discouraged from speaking or thinking about the death due to fear of psychological harm and impact on fertility. Primary coping mechanisms involved seeking support within the community and accepting the loss as God’s will. Mothers desired more communication from health-care providers at the time of death. Despite the cultural norm of silent acceptance in the face of perinatal loss, intense maternal grief and desire to mourn may allow more opportunities for health-care workers to support bereaved mothers.
Providing nursing care to perinatally bereaved women and their families is difficult, emotionally demanding, and complicated. Here we demonstrate how, through understanding the theoretical underpinnings of Guided Participation and perinatal grief intensity, nurses can significantly expand their competence and confidence in their ability to provide highly individualized, supportive, relationship-based perinatal bereavement care. The way that parents respond to a perinatal loss may range from little response to highly intense, long-lasting grief. Grief after such losses may be intensified when the loss experience is highly incongruent with a parent's expectations, and the parent is unable to act to reduce this incongruence. The Hutti Perinatal Grief Intensity theoretical framework and the Perinatal Grief Intensity Scale may be used to help identify parents who are likely to experience highly intense grief and need for professional follow-up after perinatal loss. However, many parents who experience intense grief have little experience in coping with such feelings. Guided Participation is a middle-range theory of teaching and learning. It is used in the context of perinatal bereavement to help bereaved parents navigate the feelings and numerous grief-related issues that occur as a consequence of the loss, with the nurse serving as the expert guide. This combined theoretical approach to care assists nurses to assess grief intensity and to provide highly effective, relationship-driven care.
There are several ways, clinically, to approach grief after perinatal death, including from a humanistic or a medicalized perspective. The death of a baby is complicated. The loss is an embodied one that incites deep psychological wounds and can be isolating for many parents. Parents process their grief experiences within a sometimes oppressive social context that either sees their expressions of loss as a normal response to an abnormal tragedy or as pathology. Several diagnostic categories have been proposed relative to the traumatic grief experiences of grieving parents that potentially affect them. We explore this nomenclature and, through the lens of a Social-Cognitive Processing Model, examine social support, attitudes, context, and oppressive interpersonal and social structures that affect parents. Clinical implications are discussed.