Comment réagit une mère lorsqu’elle apprend que l’enfant qu’elle porte est atteint d’une grave maladie génétique ? Comment une femme portée par sa foi chrétienne peut-elle vivre le décès prématuré de cet enfant ?
Dans son témoignage poignant, Aude Lombard montre comment la présence du Christ dans sa vie - et dans celle son mari – l’a aidée et soutenue tout au long de cet événement si particulier.
Il s’agit à la fois d’un hommage à sa fille Juliette, porteuse d’une forme rare de trisomie et décédée au cours du huitième mois de grossesse, et d’un vibrant témoignage de foi, qui montre que, malgré l’épreuve, il est possible d’en tirer du positif, avec l’aide de Dieu.
Dès l’annonce du diagnostic, à la vingtième semaine de grossesse, de nombreuses questions existentielles et spirituelles sont venus assaillir l’esprit d’Aude. Cette nouvelle a fait l’effet « d’une déflagration intérieure, mêlée d’une sidération brumeuse », écrit-elle.
Mais au terme de ce parcours de deuil, qui aura été pour elle un véritable combat spirituel, Aude peut dire : "Je sais aujourd’hui que je peux passer par des épreuves sans être détruite, voire en étant fortifiée."
Son récit est un puissant encouragement pour tous ceux qui traversent des épreuves analogues.
Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.
Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.
Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.
Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.
Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
BACKGROUND: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day.
METHOD: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group.
RESULTS: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day.
CONCLUSION: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
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.
De nombreux parents prennent conscience qu'il n'est pas facile de parler en famille de l'expérience douloureuse de la perte d'un bébé avant la naissance. C'est ce qu'ont vécu les trois mamans, auteurs et illustratrice de ce petit livre. Elles l'ont conçu pour aider des parents à partager des moments d'échange et d'intimité avec leurs enfants, lorsqu'ils ont des questions exprimées ou implicites après une telle épreuve.
Leur ouvrage sera une aide précieuse pour parler de cette souffrance avec les enfants de six à dix ans.
La mort met souvent mal à l'aise. Celle d'un enfant, encore plus. Face au deuil périnatal et à la douleur des parents, les proches se sentent souvent démunis et ne savent pas quoi dire. L'écart se creuse, les mots manquent... et les parents souffrent en silence. Si bien qu'au moment où les parents ont le plus besoin de soutien, ils en reçoivent souvent le moins. Pour sortir de cette dynamique et créer des ponts, le livre s'adresse à la fois :
- Aux proches (famille, amis, collègues) : vous trouverez quinze clés pour mieux comprendre les parents endeuillés, ainsi que des outils pratiques pour dépasser la gêne de ne pas savoir quoi dire. Vous trouverez aussi des suggestions pour vous manifester auprès des parents et leur offrir le meilleur de vous-mêmes.
- Et aux parents du bébé décédé : vous trouverez des pistes pour identifier vos besoins du moment et vous pourrez vous inspirer de nombreux témoignages d'autres couples endeuillés pour vous autoriser à faire des demandes et à recevoir de l'aide.
Au coeur du livre, se trouvent aussi plus de 130 idées concrètes de soutien. Que ce soit au niveau logistique, émotionnel ou symbolique, chacun pourra choissir ce qui lui parle le plus en fonction de sa personnalité et de son parcours. Car contrairement à l'idée reçue, dans ces moments-là, il y a en fait beaucoup de choses que l'on peut dire ou faire.
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.
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.
IMPORTANCE: Pregnancy loss and infant death are unexpected, traumatic, life-changing events. The role of occupational therapy practitioners in treating this population is not well defined.
OBJECTIVE: To describe the outcomes of an occupation-based residential retreat for women who have experienced pregnancy or infant loss.
DESIGN: Program evaluation.
SETTING: Seven residential retreats for bereaved mothers.
PARTICIPANTS: One hundred forty-one women who experienced perinatal loss.
INTERVENTION: Residential retreats that were held in natural settings and included occupation-based activities such as group discussions, yoga, meditation, crafts, and rituals to facilitate grieving and healing processes after perinatal loss.
OUTCOMES AND MEASURES: The Beck Depression Inventory, PTSD Checklist-Civilian Version, Self-Compassion Scale, and Multidimensional Scale of Perceived Social Support were collected pre- and postretreat.
RESULTS: Statistically significant improvements were seen in women's depression, trauma, self-compassion, and perceived social support from pre- to postretreat.
CONCLUSIONS AND RELEVANCE: At present, occupational therapy practitioners support this population primarily by providing referrals and information about local resources. However, as occupational therapy practice in primary care settings grows, so too do possibilities for the development of occupational therapy-related interventions to support maternal mental health.
WHAT THIS ARTICLE ADDS: This article provides preliminary support for occupation-based retreats as a treatment for improving maternal mental health after perinatal loss.
Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.
BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA).
METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale.
RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25% .
CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.
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.
BACKGROUND: Equipping midwives and nurses with confidence to provide bereavement care to parents who have experienced a perinatal loss is vital and impacts on the efficacy of the care received by grieving parents. In education and clinical practice environments there are shortages of bereavement care questionnaires specifically designed to measure midwives' and nurses' confidence and psychosocial factors that impact on their confidence to provide bereavement care.
AIM: The purpose of the study was to develop a valid and reliable perinatal bereavement care confidence scale (PBCCS).
METHODS: The PBCCS was developed in 4 phases. Phase 1: Questionnaire development, 44 questions were formulated from the literature. Phase 2: Face and content validation of the PBCCS by an Expert Panel. Phase 3: A pilot study was conducted and included 10 cognitive pre-testing interviews and test-retest reliability assessment with a cohort of 26 midwives. Phase 4: Construct validity was assessed using factor analysis with 277 midwives and nurses. In order to avoid confusion with terminologies, the term midwife was used for both nurses and midwives who provided care to bereaved parents and participated in the study. Internal consistency reliability measurement was assessed with Cronbach's alpha. Ethical approval of the study was obtained from four maternity hospitals in Ireland.
RESULTS: The PBCCS has 43 items. Bereavement care knowledge (15 items, 3 sub-scales). Bereavement care skills (9 items, 2 sub-scales). Self-awareness (8 items, 2 sub-scales). Organisational support (11 items, 2 subscales). The internal consistency reliabilities ranged from 0.753 to 0.871 except for one subscale 0.663.
CONCLUSIONS: The PBCCS is a valid and reliable tool with good psychometric properties which can be used to measure midwives' confidence and the psychosocial factors thatimpact on their confidence to provide bereavement care.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Expérience unique de rencontre intime avec soi, la grossesse engage la future mère vers des remaniements psychiques importants : de la transparence psychique à la préoccupation maternelle primaire, dans un continuum entre l’ante et le postnatal, la relation d’objet virtuelle développant l’interface entre le devenir parents et le naître humain. La mort périnatale représente un insupportable télescopage entre vie et mort, survenant dans ce contexte de fragilité psychique et bousculant l’ordre des générations. Les couples sont ainsi contraints, au-delà de la douleur indicible, d’entreprendre un voyage psychique effrayant. D’ailleurs, qu’ont-ils perdu ? Comment peut s’engager le travail de deuil d’un objet pas encore véritablement objectalisé dans ce temps des remaniements psychiques liés à la grossesse ? Et au delà, quels sont les enjeux psychiques du deuil périnatal ? Le moment de l’annonce est un véritable traumatisme. Ce trauma entraîne un sentiment d’anéantissement de soi et l’effondrement des ressources de mentalisation et de symbolisation habituelles avec un tel effet de désorganisation sur le fonctionnement psychique que le sujet ne peut plus élaborer ce à quoi il est confronté. Les spécificités du deuil périnatal sont multiples et sous-tendent les remaniements psychiques liés à la perte. La représentation même de l’objet de la perte, du fait de l’absence de traces, de souvenirs, est particulière, demandant d’interroger la métapsychologie freudienne en réfléchissant sur le devenir objectal du bébé mort. La nature de l’investissement fœtal, entre narcissique et objectal, influence-t-elle l’élaboration du deuil ?
Plusieurs destins psychiques du fœtus ont été décrits, qui influencent l’évolution du deuil, eux-mêmes en lien avec l’histoire infantile de la femme. L’ensemble de ces facteurs semble déterminer une évolution favorable ou non à un deuil périnatal. C’est ce que nous proposons de questionner à partir de la rencontre avec Mme L.
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.
BACKGROUND: Usually, parents remain at the hospital for two or three days after a stillbirth in Sweden, and the routine until recently has been to place the baby in a refrigerator during the night. A device, the Cubitus Baby, a specially designed cot with cooling blocks, was implemented in all 47 delivery wards during 2013 and 2014.
AIM: To investigate the midwives' experiences of using the device when supporting parents after the stillbirth.
METHOD: Questionnaires were completed by midwives, and a single open-ended question was analysed using content analysis.
FINDINGS: 154 midwives responded. Four categories were identified, with two subgroups in each category: Feelings of dignity (Satisfactory feelings in working with grief; Design and function), Caring cooling (The cooling function; A cold baby), Time for farewell (Time together; Time to make your own choice) and Satisfying feelings for the parents (The parents and Cubitus Baby; The possibility for bonding).
CONCLUSIONS: The midwives found that this practice provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital. In modern perinatal palliative care, it is not justifiable to place a stillborn baby in a refrigerator.
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.