Silent Tears of Midwives: 'I Want Every Mother Who Gives Birth to Have Her Baby Alive'-A Narrative Inquiry of Midwives Experiences of Very Early Neonatal Death from Tanzania
Midwives; Neonatal Death
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being. Research aims: To explore how midwives are impacted by and cope with high rates of very early neonatal deaths. To document midwives' insights and local solutions that may reduce very early neonatal deaths in limited resource settings. To document the stories of midwives in order to create awareness and garner support for midwives and their critical work in low resource settings. Methods: Narrative inquiry utilizing semi structured interviews. Twenty-one midwives with at least six months experience who had experienced or witnessed very early neonatal death were interviewed. Data were audio recorded and transcribed, and reflexive thematic analysis of transcripts was conducted. Results and discussion: Three themes were identified: (1) deep sadness resulting from very early neonatal deaths leading to internal struggles; (2) use of spirituality, including prayer and occasional beliefs that unexplainable deaths were 'God's plan'; and (3) development of resilience by seeking solutions, educating themselves, taking accountability and guiding mothers. Participating midwives noted that inadequate staff and high caseloads with limited basic supplies hindered their clinical practice. Participants articulated that they concentrated on active solutions to save babies during labour, such as vigilant foetal rate heart monitoring and partogram. Further, reduction and prevention of very early neonatal death is a complex problem requiring multidisciplinary teams and woman-centred care approaches to address issues contributing to the health of mothers and their new-borns. Conclusions: Midwives' narratives highlighted ways of coping with grief and deep sadness, through prayer, and further education of both mothers and fellow colleagues to achieve better antenatal and intrapartum care and outcomes. This study gave midwives an opportunity for their voices to be heard and to generate solutions or insights that can be shared with colleagues in similar low-resource settings.
Becker J; Becker C; Abeysekera R; Moir J; Gray M; Shimwela M; Oprescu F
Children
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/children10040705" target="_blank" rel="noreferrer noopener">10.3390/children10040705</a>
Clinician perception of care at the end of life in a quaternary neonatal intensive care unit
Infant, Newborn; palliative care; symptom management; Intensive Care Units, Neonatal; Intensive Care Units; Nicu; neonatal death; end of life care; quality of death
INTRODUCTION: Care for neonates at the end of life (EOL) is often challenging for families and medical teams alike, performed suboptimally, and requires an experienced and compassionate clinician. Much literature exists on adult and pediatric EOL care, but limited studies examine the neonatal process. METHODS: We aimed to describe clinicians' experiences around EOL care in a single quaternary neonatal intensive care unit as we implemented a standard guideline using the Pediatric Intensive Care Unit-Quality of Dying and Death 20 tool. RESULTS: Surveys were completed by 205 multidisciplinary clinicians over three time periods and included 18 infants at EOL. While most responses were high, a meaningful minority were below goal (<8 on 0-10 scale) for troubling symptom management, conflict between parents and staff, family access to resources, and parent preparation of symptoms. Comparison between Epochs revealed improvement in one symptom management and four communication categories. Satisfaction scores related to education around EOL were better in later Epochs. Neonatal Pain, Agitation, and Sedation Scale scores were low, with few outliers. DISCUSSION: These findings can guide those aiming to improve processes around neonatal EOL by identifying areas with the greatest challenges (e.g., conflict management) and areas that need further study (e.g., pain management around death).
Imai L; Gray MM; Kim BJH; Lyle ANJ; Bock A; Weiss EM
Frontiers in Pediatrics
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/10.3389/fped.2023.1197360" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1197360</a>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho ÁM; Fernández MIM; Jiménez-López FR; Granero-Molina J; Hernández-Padilla JM; Hernández SE; Fernández-Sola C
Advances in Neonatal Care
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/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
Factors contributing to men’s grief following pregnancy loss and neonatal death: further development of an emerging model in an Australian sample
Foetal anomaly; Grief; Men; Miscarriage; Neonatal death; Pregnancy loss; Stillbirth; Termination of pregnancy
Historically, men’s experiences of grief following pregnancy loss and neonatal death have been under-explored in comparison to women. However, investigating men’s perspectives is important, given potential gendered differences concerning grief styles, help-seeking and service access. Few studies have comprehensively examined the various individual, interpersonal, community and system/policy-level factors which may contribute to the intensity of grief in bereaved parents, particularly for men.
Obst KL; Oxlad M; Due C; Middleton P
BMC Pregnancy and Childbirth
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/s12884-020-03514-6" target="_blank" rel="noreferrer noopener">10.1186/s12884-020-03514-6</a>
Perinatal palliative care
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Anales de Pediatría (English Edition)
2022
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/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
end of life; neonatal death; neonates; palliative care; program development; rooming-in
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opportunity to spend as much time as possible with their infant in order to make memories and parent their infant. PURPOSE: The objective of the Mother Baby Comfort Care Pathway is to implement a program of family-centered care with logistically flexible care delivery, allowing mothers and their families to share as normal a postpartum care experience as possible with a focus on quality of life, memory making, and time spent together. METHODS: The program was developed with the nucleus of care coordination and provision on the Mother Baby Unit (postpartum unit), with involvement from the labor and delivery room, NICU, and other units as necessary to provide the postpartum mother, her dying infant, as well as possible additional siblings (in the case of multiple gestation), postpartum care while rooming-in. The program was rolled out with training workshops for postpartum nurses. FINDINGS: Nurses who took part in the workshops and the patient care program rated both highly. IMPLICATIONS FOR PRACTICE: The Mother Baby Comfort Care Pathway aims to offer a framework for providing multidisciplinary family-centered comfort care to newborns during the postpartum period in a compassionate, evidence-based, and individualized manner in order to maximize quality time together for families with a dying infant.
Czynski AJ; Souza M; Lechner BE
Advances in Neonatal Care
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/anc.0000000000000838" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000838</a>
Informing mothers of neonatal death and the need for family-centered bereavement care: A phenomenological qualitative study
grief; neonatal death; bereavement; burial; funeral rites
PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were identified from the neonatal mortality records of two large neonatal intensive care units with high neonate turnover rates in Amman, Jordan. Data were collected using semistructured interviews with the participants. Interpretive phenomenology was used to generate themes regarding the essence of the mother's experience. RESULTS: Critical analyses of mothers' accounts revealed three major themes: (a) Minimize the hurt, which described how mothers intuited overprotection by their families while the news was conveyed indirectly to them; (b) The striking reality of death, which captured mothers' distressing experiences while realizing the loss of their neonates; and (c) Farwell my baby, which accentuated mothers' needs and experiences while neonates' bodies were honored and prepared for burial per the cultural norms in Jordan. PRACTICE IMPLICATIONS: Our findings highlighted the complex dynamics of familial interactions and cultural influences on mothers' bereavement experiences at the time of neonatal death. The grieving mothers expressed unfulfilled needs of receiving professional bereavement support at the time of neonatal death. Strategies are needed to optimize the supportive role of specialized nurses in providing family-centered bereavement care to mothers and their families who experience neonatal death.
Abdel Razeq NM; Al-Gamal E
Journal for Specialists in Pediatric 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/10.1111/jspn.12328" target="_blank" rel="noreferrer noopener">10.1111/jspn.12328</a>
Grief among Neonatal Intensive Care Nurses
grief; neonatal intensive care; neonatal death; nurses
BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses working in a Level IV NICU in Northern California, United States completed online surveys. Level of grief among NICU nurses, perceptions of grief support available at their institution, and past and future grief coping methods were assessed. PARTICIPANTS: A diverse sample of 55 NICU nurses, mean age 45.5 (SD = 11.7) years. SETTING: A high-acuity NICU in one large Northern California hospital. METHODS: Participant demographic data and the Revised Grief Experience Inventory were completed online. RESULTS: Total grief scores ranged between 22 and 82 with a mean of 46.9 (SD = 17.4). Sixty percent (n = 33) moderately/strongly disagreed on adequacy of current grief support services at their institution and 81% (n = 45) reported hospital staff could benefit from additional grief support. Nurses' past grief support included family, friends, and church. Future grief resources would include family, friends, and co-workers. Participants indicated need for debriefing and additional nurse staffing resources at the time of a patient death. CONCLUSIONS: Neonatal intensive care unit nurses in our study reported experiencing grief. Debriefing and bereavement support may be helpful for nurses working in high-stress environments where there is a higher likelihood of patient death.
Rodriguez A; Spilker A; Goyal D
The American Journal of Maternal/Child Nursing
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/10.1097/nmc.0000000000000634" target="_blank" rel="noreferrer noopener">10.1097/nmc.0000000000000634</a>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho Ávila M; Fernández Medina I M; Jiménez-López F R; Granero-Molina J; Hernández-Padilla J M; Hernández Sánchez E; Fernández-Sola C
Advances in Neonatal Care
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/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
New understandings of fathers' experiences of grief and loss following stillbirth and neonatal death: A scoping review
Fathers; Grief; Loss; Neonatal death; Stillbirth
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.
Jones K; Robb M; Murphy S; Davies A
Midwifery
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/10.1016/j.midw.2019.102531" target="_blank" rel="noreferrer noopener">10.1016/j.midw.2019.102531</a>
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study
Rural Population; Needs Assessment; Pregnancy; Infant Newborn; Young Adult; Infant Mortality; Humans; Adult; Stillbirth; Risk Assessment; Adolescent; Cohort Studies; Female; Infant; Retrospective Studies; Databases Factual; Incidence; Developing Countries; Mothers/ psychology; Postpartum Period; Perinatal Mortality/trends; Maternal Health; Bangladesh; Bangladesh/epidemiology; Depression/ epidemiology/etiology; Depressive symptoms; Mental health; Neonatal death; Stillbirth/ ethnology
Surkan PJ; Sakyi K; Strobino DM; Mehra S; Labrique A; Ali H; Ullah B; Wu L; Klemm R; Rashid M; West KP; Christian P
Annals of Epidemiology
2016
<a href="http://doi.org/10.1016/j.annepidem.2016.06.001" target="_blank" rel="noreferrer noopener">10.1016/j.annepidem.2016.06.001</a>
PARENTS 2 study protocol: pilot of Parents' Active Role and ENgagement in the review of Their Stillbirth/perinatal death
healthcare improvement; neonatal death; parental involvement; perinatal mortality review process; stillbirth
BACKGROUND: The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests that parents are unaware that a formal review following the death of their baby takes place. Many would welcome the opportunity to feedback into the meeting itself. Parental involvement in the perinatal mortality review meeting has the potential to improve patient satisfaction, drive improvements in patient safety and promote an open culture within healthcare. Yet evidence on the feasibility of involving bereaved parents in the review process is lacking. This paper describes the protocol for the Parents' Active Role and Engangement iN the review of their Stillbirth/perinatal death study (PARENTS 2) , whereby healthcare professionals' and stakeholders' perceptions of parental involvement will be investigated, and parental involvement in the perinatal mortality review will be piloted and evaluated at two hospitals. METHODS AND ANALYSIS: We will investigate perceptions of parental involvement in the perinatal mortality review process by conducting four focus groups. A three-round modified Delphi technique will be employed to gain a consensus on principles of parental involvement in the perinatal mortality review process. We will use three sequential rounds, including a national consensus meeting workshop with experts in stillbirth, neonatal death and bereavement care, and a two-stage anonymous online questionnaire. We will pilot a new perinatal mortality review process with parental involvement over a 6-month study period. The impact of the new process will be evaluated by assessing parents' experiences of their care and parents' and staff perceptions of their involvement in the process by conducting further focus groups and using a Parent Generated Index questionnaire. ETHICS AND DISSEMINATION: This study has ethical approval from the UK Health Research Authority. We will disseminate the findings through national and international conferences and international peer-reviewed journals.
2018-01
Bakhbakhi D; Siassakos D; Storey C; Heazell A; Lynch M; Timlin L; Burden C
Bmj Open
2018
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/10.1136/bmjopen-2017-020164" target="_blank" rel="noreferrer">10.1136/bmjopen-2017-020164</a>
Predicting grief intensity after recent perinatal loss
Miscarriage; Neonatal Death; Perinatal Grief Screening Instrument; Stillbirth
OBJECTIVE: The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future intense grief based on a PGIS score obtained early after a loss. METHODS: A prospective observational study was conducted with 103 international, English-speaking women recruited at hospital discharge or via the internet who experienced a miscarriage, stillbirth, or neonatal death within the previous 8weeks. Survey data were collected at baseline using the PGIS and the Perinatal Grief Scale (PGS). Follow-up data on the PGS were obtained 3months later. Data analysis included descriptive statistics, Cronbach's alpha, receiver operating characteristic curve analysis, and confirmatory factor analysis. RESULTS: Cronbach's alphas were >/=0.70 for both instruments. PGIS factor analysis yielded three factors as predicted, explaining 57.7% of the variance. The optimal cutoff identified for the PGIS was 3.535. No difference was found when the ability of the PGIS to identify intense grief was compared to the PGS (p=0.754). The PGIS was not inferior to the PGS (AUC=0.78, 95% CI 0.68-0.88, p<0.001) in predicting intense grief at the follow-up. A PGIS score>/=3.53 at baseline was associated with increased grief intensity at Time 2 (PGS: OR=1.97, 95% CI 1.59-2.34, p<0.001). CONCLUSIONS: The PGIS is comparable to the PGS, has a lower response burden, and can reliably and validly predict women who may experience future intense grief associated with perinatal loss.
Hutti MH; Myers J; Hall LA; Polivka BJ; White S; Hill J; Kloenne E; Hayden J; Grisanti MM
Journal of Psychosomatic Research
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).
10.1016/j.jpsychores.2017.07.016
Neonatal Death In The Emergency Department: When End-of-life Care Is Needed At The Beginning Of Life
Mortality; Intensive Care; Emergency Medical Care; Newborn Babies; Palliative Care; Stillbirth; Fetuses; Hospitals
Neonatal Death; Neonatal Bereavement; Palliative Care; Emergency Department
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these efforts, hundreds of infants die every year in emergency departments across the United States. Emergency care providers, unaccustomed to providing neonatal end-of-life care, may feel unsure about how to best care for families during resuscitative measures and after neonates die. There is literature to suggest that increased knowledge and advance preparation can calm fears of providers caring for patients in such tragic situations. We aim to provide in this article a broad overview of a variety of topics related to neonatal death and bereavement care.
Jessica T Fry; Natalia Henner
Clinical Pediatric Emergency Medicine
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).
http://dx.doi.org/10.1016/j.cpem.2016.04.001