The perinatal bereavement project: development and evaluation of supportive guidelines for families experiencing stillbirth and neonatal death in Southeast Brazil-a quasi-experimental before-and-after study.
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SUBMITTER: Salgado HO
PROVIDER: S-EPMC7787239 | biostudies-literature | 2021 Jan
REPOSITORIES: biostudies-literature
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The perinatal bereavement project: development and evaluation of supportive guidelines for families experiencing stillbirth and neonatal death in Southeast Brazil-a quasi-experimental before-and-after study.
Salgado Heloisa de Oliveira HO Andreucci Carla Betina CB Gomes Ana Clara Rezende ACR Souza João Paulo JP
Reproductive health 20210106 1
<h4>Background</h4>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 an ...[more]
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Project description: Not available
| S-EPMC8259024 | biostudies-literature
Project description:Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
| S-EPMC10453894 | biostudies-literature
Project description:Study objectiveStillbirth is burdensome in low-income and middle-income countries (LMICs), especially in sub-Saharan Africa and South Asia. Currently, there are two core outcome sets (COS) for stillbirth (prevention and bereavement care), but these were developed with limited reflection of the needs of parents in an LMIC setting. To address this gap, the objective of this study was to establish consensus on the most important outcomes for stillbirth prevention and bereavement care following stillbirth in sub-Saharan Africa and South Asia.MethodsPrevious stillbirth outcomes were reviewed for inclusion into the COS by senior research leaders and community engagement and involvement members from six sub-Saharan African and two South Asian countries. An online real-time Delphi survey was then conducted with healthcare professionals, parents who have experienced a stillbirth and researchers in the field to score the agreed list. The results of the Delphi were summarised and then discussed at a virtual consensus meeting where the final COS were agreed.Results287 participants contributed towards the Delphi (143 midwives, 32 obstetricians, 50 mothers, 12 fathers and 50 researchers), with at least 2 parents attending the full consensus meetings. Consensus was reached on 13 core outcomes for stillbirth prevention covering 5 domains: obstetric, fetal, perinatal and neonatal outcomes and maternal complications. For bereavement care following a stillbirth, five core outcomes reached a consensus, which included outcomes related to labour and birth, a postpartum complication, care experience, mental health and emotional and social well-being.DiscussionThese COS will improve the consistency of outcomes for future research in an LMIC setting. Additionally, they will complement existing COS for stillbirth prevention and bereavement care developed in high-income settings. The output from this work will move us towards a global set of outcomes that can be used in stillbirth research worldwide.
| S-EPMC11781104 | biostudies-literature
Project description:AimTo report an analysis of the concept of perinatal bereavement.BackgroundThe concept of perinatal bereavement emerged in the scientific literature during the 1970s. Perinatal bereavement is a practice-based concept, although it is not well-defined in the scientific literature and is often intermingled with the concepts of mourning and grief.DesignConcept Analysis.Data sourcesUsing the term 'perinatal bereavement' and limits of only English and human, Pub Med and CINAHL were searched to yield 278 available references dating from 1974-2011. Articles specific to the experience of perinatal bereavement were reviewed. The final data set was 143 articles.Review methodsThe methods of principle-based concept analysis were used. Results reveal conceptual components (antecedents, attributes and outcomes) which are delineated to create a theoretical definition of perinatal bereavement.ResultsThe concept is epistemologically immature, with few explicit definitions to describe the phenomenon. Inconsistency in conceptual meaning threatens the construct validity of measurement tools for perinatal bereavement and contributes to incongruent theoretical definitions. This has implications for both nursing science (how the concept is studied and theoretically integrated) and clinical practice (timing and delivery of support interventions).ConclusionsPerinatal bereavement is a multifaceted global phenomenon that follows perinatal loss. Lack of conceptual clarity and lack of a clearly articulated conceptual definition impede the synthesis and translation of research findings into practice. A theoretical definition of perinatal bereavement is offered as a platform for researchers to advance the concept through research and theory development.
| S-EPMC3675189 | biostudies-literature
Project description:BackgroundStillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death.MethodsThis trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken.DiscussionThe LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men.Trial registrationAustralian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
| S-EPMC9167910 | biostudies-literature
Project description:IntroductionObstetricians describe feeling shocked and isolated following stillbirth. Few receive adequate training in how to care for bereaved parents or themselves. We developed a novel workshop for trainee obstetricians using applied drama techniques-in collaboration with the National Theatre of Ireland, the national training body for obstetricians and gynaecologists, and patient support groups-to teach obstetricians skills in communication and self-care around the time of stillbirth.Materials and methodsFive workshops, delivered January-May 2018, are the focus of this evaluation. Senior trainees in Obstetrics attended and completed a post-workshop evaluation questionnaire. Five-point Likert scales were used to assess participants' communication and support skills pre- and post- the workshop, and their views on pre-specified attributes needed when caring for families experiencing stillbirth and aspects of the workshop. Quantitative and qualitative data were analysed using descriptive statistics and content analysis, respectively.Results39/59 (66%) workshop participants completed the questionnaires. Most had received no prior training in caring for families experiencing antenatal (31/39, 80%) or intrapartum (34/39, 87%) stillbirth. Following the workshop there was a significant improvement in trainee's level of confidence in breaking bad news, communicating clearly with the family when breaking bad news, recognising the emotional needs of the family, recognising their own emotional responses, and supporting their colleagues. Trainees were positive about the workshop content and delivery; 90% stated they would recommend it to a colleague.DiscussionAdequate, appropriate, and stimulating education and training in stillbirth care and self-care is clearly needed to improve patient care. Our findings demonstrate that this novel educational workshop using applied drama techniques-developed in collaboration with diverse stakeholders and underpinned by the views of parents and obstetricians who had experience of stillbirth-is an acceptable and appropriate way of training obstetricians in how to care for bereaved parents and/or to engage in self-care.
| S-EPMC9671339 | biostudies-literature
Project description: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.
| S-EPMC6572886 | biostudies-literature
Project description:Parents are key protective systems in the lives of children experiencing homelessness. Evidence suggests that parent emotional reactivity, expression, and regulation play a critical role in promoting adaptive parenting behaviors. Studies of emotional reactivity in parents utilize different methods, including self-report, observations, and physiological measures. However, these methods are rarely evaluated together, particularly among disadvantaged families. The present study examined how subjective (i.e., self-report), observed, and physiological measures of parent emotional reactivity relate to each other and to observed parenting behaviors in problem-solving and teaching parent-child interaction tasks. Participants included fifty 4- to 7-year-old children and their caregivers staying in an emergency homeless shelter. Observed and subjective emotional reactivity were largely uncorrelated, except for positive emotions during problem-solving tasks. Adaptive parenting behavior was related to lower scores on measures of subjective and observed negative emotions and higher observed scores for positive emotions during problem-solving tasks, as well as higher observed scores of positive emotions during teaching tasks. Physiological reactivity was not related to parenting behaviors. Results suggest that associations of emotional reactivity with parenting behavior depend on the context of the parent-child interaction and how emotional reactivity is measured. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
| S-EPMC9364434 | biostudies-literature
Project description:Background: Attentional bias refers to a preference for (e.g., vigilance) or a shifting away (e.g., avoidance) of one's focus with respect to specific stimuli. Accumulating evidence suggests that an attentional bias toward death/threat-related stimuli exists in bereaved individuals experiencing prolonged grief (PG). Measuring for different processing may reflect different cognitive characteristics. Therefore, this study sought to compare information-processing biases in Chinese individuals with high versus low levels of PG symptomatology at supraliminal and subliminal levels, respectively. Method: A 2 (grief level) × 2 (consciousness level) × 2 (word type) three-factor mixed design with supraliminal and subliminal tasks was utilized in the current study. Based on their Prolonged Grief Questionnaire-13 (PG-13) scores, 38 participants were included in the low-PG group, and 34 individuals were included in the high-PG group. All the participants completed a dot-probe task in which they were primed with death-related and life-related words paired with neutral stimuli. Results: High-PG individuals were slower in reacting to the death-related information in both supraliminal and subliminal tasks. After controlling for other symptoms in the backward deletion regression, PG-13 scores significantly predicted the avoidance tendency to death-related words in the supraliminal task, while anxiety was the best predictor of turning one's vision away from death-related stimuli in the subliminal trials. Conclusion: The results suggested that high PG is associated with a tendency to avoid death-related words. Future research is needed to explore interventions that address the avoidance of death-related stimuli among individuals with elevated, or diagnosable, levels of PG.
| S-EPMC5511967 | biostudies-other
Project description:BackgroundPostmortem memento photography has emerged in Western hospitals as part of compassionate bereavement care for parents facing perinatal death. Many parents endorse this psychosocial intervention, yet implementation varies greatly and little research on parents' specific needs guides health care professionals. Parents are in crisis and vulnerable after the death of their child, thus best practice is crucial. This study contributes 104 parents' experiences and opinions toward the understanding of best practice in perinatal bereavement photography.MethodsParents who experienced the perinatal death of their child were recruited from U.S.-based bereavement organizations and social media sites. Volunteers completed an anonymous internet survey with open- and closed-ended questions. Direct recommendations and pertinent statements regarding the process of postmortem photography were analyzed for thematic content in keeping with conventional content analysis. Recurrent themes and sub-themes were counted to identify response patterns.ResultsOf 93 parents with pictures, 92 endorsed them. Of 11 without pictures, nine wanted them. Parents made a variety of recommendations regarding appropriate psychosocial support, the consent process, obstacles to photography, logistics of photography, and material aspects of photographs themselves. Overall, parents wanted many pictures and much variety. Some wanted professional photography while others wanted support for taking their own pictures. Parents wanted guidance from staff who respected their particular needs. Many said decisions were difficult during their crisis. Parents who were initially resistant expressed current appreciation for pictures or expressed regret that they had not participated. Parents recommended that professionals strongly encourage parents to create memento photos despite parents' initial reservations. Persistent cultural reasons against photography emerged in one case. Quotes by parents illuminate themes and enable respondents to speak directly to health care professionals.ConclusionsParents overwhelmingly support postmortem bereavement photography when conducted sensitively, even if imperfectly executed. Providers significantly influence parents during their crises; mindful, patient-centered care with appropriate respect for difference is necessary. Providers must understand the importance of postmortem photographs to parents who have limited opportunity to capture memories of their child. Hospitals should provide education and support for this important psychosocial intervention.
| S-EPMC4362629 | biostudies-literature