Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
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.
Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Children (Basel)
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</a>
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
Stillbirth; Perinatal loss; Bereavement protocol; Humanized birth assistance; Maternal grief; Neonatal bereavement; Neonatal loss; Perinatal bereavement
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.
Salgado HdO; Andreucci CB; Gomes ACR; Souza JP
Reproductive Health
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12978-020-01040-4" target="_blank" rel="noreferrer noopener">10.1186/s12978-020-01040-4</a>
Factors affecting the grieving process after perinatal loss
Perinatal loss; Attachment style; Complicated grief; Coping style; Developmental trait; Personality trait
Factors associated with the grief process in response to perinatal loss have been investigated. However, few studies focused on the intrapersonal factors, such as developmental and personality traits. Hence, this study aimed to investigate medical and psychosocial risk factors, including inter- and intrapersonal factors for the development of complicated grief following perinatal loss, while considering emotional support.
Kishimoto M; Yamaguchi A; Niimura M; Mizumoto M; Hikitsuchi T; Ogawa K; Ozawa N; Tachibana Y
BMC Women's Health
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12905-021-01457-4" target="_blank" rel="noreferrer noopener">10.1186/s12905-021-01457-4</a>
Providing Palliative Care to Neonates With Anencephaly in the Home Setting
anencephaly; palliative care; perinatal bereavement; perinatal end-of-life; perinatal loss
Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in the home setting to this population. This article is a secondary analysis that discusses the concerns and complications that parents experienced after bringing home a neonate with anencephaly. Each parental experience is a qualitative descriptive summary extracted from a larger study on the impact of anencephaly on parents. Parents reported feeling alone in their grief and struggled with their partners' differing style of grief. Parents' primary concerns after hospital discharge included transporting their neonate home, feeding their neonate, changing cranial defect dressings, managing pain and seizures, addressing uncertainty, and facilitating a good death. All parents received hospice services from health care professionals without perinatal bereavement training or experience. Only 1 woman received follow-up care after the death of her son. Preparing and educating health care professionals providing hospice and palliative services with perinatal bereavement training may be beneficial. Identifying and allocating local and online perinatal bereavement resources may provide parents with the tools and support necessary to facilitate healing after perinatal loss.
Berry SN
Journal of Hospice & Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000770" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000770</a>
Integrative Review of Emotional Care Following Perinatal Loss
integrative review; perinatal loss; emotional support; emotional care; perinatal grief
Emotional care is an important part of the holistic labor and should be considered when providing care to people affected by perinatal losses. To synthesize the findings from recently published scientific evidence on the emotional care needed following perinatal loss, a search in PubMed, CINAHL, SCOPUS, and Web of Science was carried out in January 2020 yielding 22 studies which met the inclusion criteria and were analyzed following Whittemore and Knafl's (2005) methodology. One category on "offering emotional care" was identified: "Aspects influencing the psychosocial well-being of women after perinatal loss," comprising eight themes: risk of complicated grief, cultural values, perinatal losses in multiple pregnancies, experience of subsequent pregnancies, need of information, contact with the deceased baby, impact on relatives, and strategies for emotional care. In conclusion, the evidence highlights the need of specific emotional grief care.
Furtado-Eraso S; Escalada-Hernández P; Marín-Fernández B
Western Journal of Nursing Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0193945920954448" target="_blank" rel="noreferrer noopener">10.1177/0193945920954448</a>
The grief ritual of extracting and donating human milk after perinatal loss
Infant; Female; Humans; Infant Mortality; Pregnancy; Perinatal loss; Mothers; Stillbirth; Ceremonial Behavior; Grief; Ambiguous loss; Continuing bonds; Grief rituals; Meaning-making in loss; Milk donation; Milk Banks; Milk Human
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract and donate their human milk to nonprofit milk banks. Through an analysis of 88 women's personal testimonials, collected between 2017 and 2019, I uncover the ritualistic attributes of the extraction and donation process. The bereaved mothers in this study experienced ambiguous loss, comprising the combination of the physical absence and psychological presence of their baby. The process of extracting and donating their milk constitutes a grief ritual, allowing mothers to maintain and reconstruct the continuing bonds with their babies. The present study extends current understandings of organ donation in times of loss, highlighting the unique nature and consequences of the milk donation process through its conceptualization as a grief ritual.
Oreg A
Social Science & Medicine
2020
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<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2020.113312</a>
Developing an Infrastructure for Bereavement Outreach in a Maternal-Fetal Care Center
Bereavement outreach; Birth defects; Congenital anomalies; Fetal care; Grief support; Maternal care; Parental grief; Perinatal loss
Although bereavement programs are a common element of palliative medicine and hospice programs, few maternal-fetal care centers offer universal bereavement outreach services following perinatal loss. In this article, we describe the implementation of a bereavement outreach program at the Center for Fetal Diagnosis and Treatment at the Children's Hospital of Philadelphia. The four primary goals identified when developing the bereavement outreach protocol included: (1) centralize communication for patient tracking when a perinatal loss occurs, (2) provide individualized and consistent resource support for grieving patients and families, (3) identify strategic outreach points throughout the first year post-loss, and (4) instate programmatic improvements in response to feedback from patients and their families. Strategies for establishing standardized follow-up protocols and operationalizing methods to address outreach initiatives will be shared, with the primary aim of providing other fetal care centers with a proposed model for perinatal bereavement outreach services.
Cole J C M; Budney A; Howell L J; Moldenhauer J S
Fetal Diagnosis and Therapy
2020
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<a href="http://doi.org/10.1159/000507480" target="_blank" rel="noreferrer noopener">10.1159/000507480</a>
Possibilities and challenges of perinatal hospice-palliative care. [Hungarian]
hospice palliative care; neonatology; perinatal loss; perinatal period
Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how perinatal hospice-palliative care can be implemented and what opportunities it may provide on the basis of available professional guidelines. We introduce study and analysis of the professional guidelines and protocols, mainly from Anglo-Saxon countries, and describe some examples of best practices. Perinatal hospice is a specially demanding care regarding professional and personal challenges. Standardised guidelines based on consensus can serve as starting points, describing proper care and its conditions. Moreover, they can facilitate communication and coordinative processes between the collaborating specialists. Challenging conditions and possible solutions to them can be identified during supportive formative courses. Continuous formation means competency development in palliative care as well as in adequate communication. Copyright © 2020 Akademiai Kiado Rt.. All rights reserved.
Eva Z; Katalin H
Orvosi Hetilap
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1556/650.2020.31636" target="_blank" rel="noreferrer noopener">10.1556/650.2020.31636</a>
Rural Perinatal Loss: A Needs Assessment
bereavement care; early child loss; perinatal loss; rural
The purpose of this research was to ascertain the availability and depth of services of bereavement care for mothers who live rurally. The specific focus is on those who experienced early losses including pregnancy, stillbirth, neonatal, and young children who were born with fetal anomalies or neonatal disease that resulted in death. The convenience (nonprobability) sample originated from a population of mothers who lived in rural east central Minnesota. Participants were interviewed in a 60-minute interval. All data were coded confidential. Common themes, incidence of resources, or lack of bereavement resources for the participants' lived experiences were considered using a descriptive phenomenological approach. Our appreciation of the continuing bond between mother and child compels us to believe that there is an ethical obligation to reduce and remove these barriers and inequalities in bereavement support services for those who live rurally and have experienced perinatal and infant loss. Results of this study indicate the need for further study and establishment of bereavement resources in rural outreach for perinatal and early childhood loss.
Domogalla J S; McCord J; Morse R
Omega (Westport)
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222820926296" target="_blank" rel="noreferrer noopener">10.1177/0030222820926296</a>
Healthcare professionals' experiences of perinatal loss: A systematic review
Abortion; Adult; Female; Health Personnel/*psychology; healthcare professionals; Humans; Infant; Maternal Health Services/*manpower; neonatal units; Newborn; Perinatal Death; Perinatal loss; Pregnancy; psychological experiences; Spontaneous/*psychology; Stillbirth; Stillbirth/*psychology
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attributed meanings and needs conveyed by healthcare professionals in relation to perinatal loss. We identified 213 studies between 1985 and 2015, 20 of which were included in the present study for qualitative analysis. Our results point out the need for a targeted vocational training in perinatal loss, enabling healthcare professionals to achieve a proper management of their own internal states.
Gandino G; Bernaudo A; Di Fini G; Vanni I; Veglia F
Journal of Health Psychology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1359105317705981" target="_blank" rel="noreferrer noopener">10.1177/1359105317705981</a>
Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis
qualitative research; bereavement; grief; perinatal loss; photography; publication of this article.; and/or; authorship; conflicts of interest with respect to the research
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.
Ramirez F D; Bogetz J F; Kufeld M; Yee L M
Global Pediatric Health
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/2333794x19854941" target="_blank" rel="noreferrer noopener">10.1177/2333794x19854941</a>
Grief reactions of couples to perinatal loss: a one-year prospective follow-up
Gee; Grief; Marital Relationship; Miscarriage; Parents; Perinatal Loss; Social Support; Stillbirth
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 one month (T1), three months (T2), six months (T3), and one year (T4) after the pregnancy loss, all participants completed four questionnaires. To analyze the changing status of their grief and its related factors, we used a Generalized Estimating Equation (GEE) to account for correlations between repeated observations. RESULTS: Post-bereavement 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 their in-laws was low, or if they had never participated in a ritual for their deceased baby. CONCLUSIONS: Three months post-loss is the crucial period for bereaved parents after a perinatal loss. Being a parent, having no previous living children, and low-level socioemotional support from the mother's parents-in-law are significant high-risk factors for a high level of grief one year after perinatal death. RELEVANCE TO CLINICAL PRACTICE: We recommend that health professionals increase their ability to identify the factors that psychologically affect post-loss grief. Active post-loss follow-up programs should focus on these factors to offer specific support and counselling. This article is protected by copyright. All rights reserved.
Tseng YF; Cheng HR; Chen YP; Yang SF; Cheng PT
Journal of Clinical Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1111/jocn.14059" target="_blank" rel="noreferrer">10.1111/jocn.14059</a>
A Proposed Model for Perinatal Palliative Care
Multidisciplinary Care Team; Palliative Care; Perinatal Loss; Trisomy 13
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal diagnosis is confirmed. The purpose of this article is to highlight the multidisciplinary care model used within a perinatal palliative care program. A case study provides a unique perspective on support needed for parents who anticipate that their newborn may die before or shortly after birth.
Copyright © 2017 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.
Cole JCM; Moldenhauer JS; Jones TR; Shaughnessy E; Zarrin H; Coursey AL; Munson DA
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.jogn.2017.01.014" target="_blank" rel="noreferrer">10.1016/j.jogn.2017.01.014</a>
Rituals At End-of-life.
Nursing; Death; Pregnancy Loss; Child; Family Presence; Care And Treatment; Resuscitation; Perspectives
Ceremonies; Child Death; Deathbed; End Of Life; Perinatal Loss; Rites; Rituals; Sacraments
Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the strength, capacity, and health of providers who cope with death events. Rituals help the living create continuing bonds with those dying, help with coping skills, and allow healthy growth through opportunities for naming, honoring, and memorializing. The display of respect and a nonjudgmental attitude create a space for support, trust, sharing of emotion, empowerment, and quality of care during end-of-life events.
Pace JC; Mobley TS
Nursing Clinics Of North America
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.cnur.2016.05.004