The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
BMC Palliative Care
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/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
Culturally and linguistically diverse men's experiences of support following perinatal death: A qualitative study
Men; Descriptive Statistics; Human; Thematic Analysis; Male; Qualitative Studies; Australia; Perinatal Death; Bereavement; Comparative Studies; Psychosocial Factors; Support, Psychosocial; Communities; Coping; Cultural Diversity; Family Centered Care; Health Personnel; Leaders; Life Experiences; Linguistics; Public Policy; Self-Advocacy; Semi-Structured Interview; Stigma
Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families. Background: Many groups of culturally and linguistically diverse families in Australia are at higher risk of experiencing perinatal death. Culturally sensitive bereavement services are essential; however, there has been no previous research specifically examining culturally and linguistically diverse men's experiences of support following perinatal death. Design: Individual semi-structured interviews were completed with healthcare providers, community leaders and culturally and linguistically diverse men who had experienced a perinatal death in Australia (n = 16). Data were analysed using Thematic Analysis and COREQ guidelines were followed. Results: Men's need for support following perinatal death was associated with stigma, and shaped by culturally-relevant religion and ritual, and connection to community and family. Significant barriers to men seeking and gaining support included challenges with self-advocacy and navigating the woman-centred nature of perinatal care in Australia. Conclusions: Culturally and linguistically diverse men's specific needs should be included in the development of policy and practice surrounding perinatal death. While perinatal bereavement care guidelines acknowledge the importance of culturally informed care following perinatal death, there remains a lack of culturally specific supports available, particularly for culturally and linguistically diverse men. Relevance to clinical practice: Specific recommendations from this research include increasing community liaison officers or cultural consultants in hospitals and support organisations; providing culturally and linguistically diverse support groups; adopting family-centred and father-inclusive language in all perinatal death support services and ensuring clear communication and targeted assistance for culturally and linguistically diverse men to self-advocate for their baby and access to support. Patient or public contribution: This study came out of consultation with community members and member checking of results was conducted to ensure adequate representation of participants' views.
Pearson T; Obst K; Due Cl
Journal of Clinical Nursing
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/10.1111/jocn.16465%5C">10.1111/jocn.16465\</a>"
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Ward G; Adair P; Doherty N; McCormack D
Maternal & Child Nutrition
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/10.1111/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</a>
‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth
Collaboration; Bereavement; Grief; Interpersonal Relations; Life Experiences; Infant Death; Perinatal Death; Lactation; Milk Banks; Milk, Human; Donor Milk; Paternal Attitudes; Ethnographic Research; Living Donors; Milk; Milk Ejection
This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After coming to terms with their inability to have another biological child, Shachar and his wife adopted a baby. Ayelet and Alison both gave birth to stillborn babies. Subsequently, Ayelet followed conventional Israeli medical guidelines dictating the drying up of her milk, whilst Alison rejected those regulations and chose to continue lactating, which eventually led to her donating her milk to Shachar’s adopted baby. Our stories are grounded in the patriarchal Israeli context that pressures bereaved individuals to ‘move on’ quickly, silencing loss and grief (Leichtentritt et al., 2016). In this reflective piece, we propose a perspective on our interconnected story of human milk donation as a counter-practice to silencing loss, by allowing shared relational grief. [...]
Timor-Shelvin S; Oreg A; Perez AS
British Journal of Social Work
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/10.1093/bjsw/bcad025" target="_blank" rel="noreferrer noopener">10.1093/bjsw/bcad025</a>
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
BMC Palliative Care
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/10.1186/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</a>
It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death
Male; Bereavement; Infant; Palliative Care; Intensive Care Units Neonatal; Interpersonal Relations; Australia; Purposive Sample; Qualitative Studies; Health Policy; Data Analysis Software; Exploratory Research; Human; Descriptive Statistics; Phenomenological Research; Life Experiences; Thematic Analysis; Perinatal Death; Psychosocial Factors; Semi-Structured Interview; Milk Human; Donor Milk; Infant Death; Lactates; Lactation; Lactic Acid; Open-Ended Questionnaires; Paternal Attitudes; Paternal Role
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death. Semi-structured interviews were conducted with seven bereaved fathers in two Australian state/ territory jurisdictions. Purposive sampling ensured the partners of five of the fathers had been involved in bereaved breastmilk donation to a human milk bank. Thematic data analysis identified key themes that drew attention to the significant grief experienced by fathers and highlighted: (i) breastmilk and infant feeding holding significant meaning for some fathers especially within the neonatal intensive care or palliative care settings, (ii) the impact of diverse lactation management options on the awareness and involvement of fathers in their partner's lactation after infant death, (iii) fathers' provision of significant care and support for partners participating in bereaved breastmilk donation, (iv) bereaved breastmilk donation positively impacting some fathers' grief and meaning- making, and (v) bereaved families' requirement for enhanced lactation care, information and support. Results indicate the need for an enhanced focus on family-centred bereaved lactation care and acknowledgement of the positive role that bereaved breastmilk donation may have for both mothers and fathers following infant loss.
Noble-Carr D; Carroll K; Copland S; Waldby C
Breastfeeding Review
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/" target="_blank" rel="noreferrer noopener"></a>
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Nedruetai P; Puangpaka K; Bih-Ching S
Pacific Rim International Journal of Nursing Research
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/" target="_blank" rel="noreferrer noopener"></a>
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Male; Female; Bereavement; Parents; Quality of Life; Grief; Infant Newborn; Australia; Pregnancy; Internet; Clinical Trials; Perinatal Death; Scales; Psychosocial Factors; Prevention and Control
Background: Stillbirth 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.Methods: This 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.Discussion: The 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 Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
Loughnan SA; Boyle FM; Ellwood D; Crocker S; Lancaster A; Astell C; Dean J; Horey D; Callander E; Jackson C; Shand A; Flenady V
Trials
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/10.1186/s13063-022-06363-0" target="_blank" rel="noreferrer noopener">10.1186/s13063-022-06363-0</a>
Bereaved parents involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’
bereaved parent; maternity; hospital death; reviews; parents involvement; perinatal death; stillbirth
Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan for the future. In Ireland, bereaved parents generally have not been involved in this review process. The aim of our study was to assess parents' perception of how they may be appropriately involved in the maternity hospital perinatal death review in ways that benefit them and the review process itself. Methods Bereaved parents (n?=?20) in Ireland were invited to take part in semistructured interviews. Thematic analysis was carried out on the interview transcripts. Results Four main themes were identified based on the participants' views and opinions on how they experienced the review process and how they feel this process may be improved. The themes reflect the journey of the parents through the different stages of the review process: Throughout process; On leaving the hospital; Interaction with the hospital ?waiting in limbo?; Review itself. Identified subthemes highlighted essential aspects of this process and care provided to parents. For the parents, open, honest communication with staff, as well as having a key hospital contact was essential. Parents wished to provide feedback on their experience and wanted to be included in the review of their baby's death, in a way that was sensitive to their needs and the hospital's schedule. Conclusion A respectful, flexible system that allows bereaved parents' involvement in their baby's perinatal death review and is tailored to their needs is essential. A collaborative process between staff and parents can highlight clinical areas in need of change, enhance lessons learned, improve bereavement services and may prevent future perinatal deaths. Public Contribution Bereaved parents were interviewed for this study.
Helps Ä; O'Donoghue K; O'Connell O; Leitao S
Health Expectations
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/https://doi.org/10.1111/hex.13645" target="_blank" rel="noreferrer noopener">https://doi.org/10.1111/hex.13645</a>
Pictures as mementos after perinatal death: a case study
Bereavement; Perinatal death; Grief; Case study
BACKGROUND: The grieving process following perinatal loss caused by life-limiting conditions presents some particularities associated with the family's culture and the symbolic relationship with the deceased. OBJECTIVE: To reflect on the symbolic meaning attributed to mementos, particularly pictures taken immediately after birth. METHOD: Case study-a qualitative analysis of the data collected through semidirected interviews. RESULTS: Of the three women that took part in the study, one woman chose not to take a picture but opted to take home the hat with her son's name on it that was provided as a regular procedure for every birth at the maternity centre. During the interview, she questioned her decision. The two other women took pictures and still look at them affectionate. One of the women keeps the picture of her child in a shrine at home, thus attributing a symbolic religious meaning to the whole experience that alleviates her pain. CONCLUSION: The symbolic meaning attributed to pictures of the deceased can help parents process grief.
Jesus RCA; Benute G; Bertolassi N; Barbosa T; Bolibio R; Figueiredo F; Setubal MS; Gibelli MA; Gomes A; Ferreira R; Francisco R; Bernardes L
International Journal of Palliative Nursing
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/10.12968/ijpn.2022.28.5.208" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.208</a>
Experience of Perinatal Death From the Father's Perspective
Adolescent; Colombia; Emotions; Fathers; Grief; Infant; Male; Middle Aged; Newborn; Perinatal Death; Qualitative Research; Young Adult
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia. METHODS: Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews. RESULTS: Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss. DISCUSSION: While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners' emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.
Lizcano PLDM; Moreno Fergusson ME; Palacios AM
Nursing Research
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/10.1097/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000369</a>
Experience of Parents Who Have Suffered a Perinatal Death in Two Spanish Hospitals: A Qualitative Study
Qualitative research; Stillbirth; Perinatal death; Perinatal grief
BACKGROUND: Perinatal grief is a process that affects families in biological, psychological, social and spiritual terms. It is estimated that every year there are 2.7 million perinatal deaths worldwide and 4.43 deaths for every 1000 births in Spain. The aim of this study is to describe and understand the experiences and perceptions of parents who have suffered a perinatal death. METHODS: A qualitative study based on Gadamer's hermeneutic phenomenology. The study was conducted in two hospitals in the South of Spain. Thirteen mothers and eight fathers who had suffered a perinatal death in the 5 years prior to the study participated in this study. In-depth interviews were carried out for data collection. Inductive analysis was used to find themes based on the data. RESULTS: Eight sub-themes emerged, and they were grouped into three main themes: 'Perceiving the threat and anticipating the baby's death: "Something is going wrong in my pregnancy"'; 'Emotional outpouring: the shock of losing a baby and the pain of giving birth to a stillborn baby'; "We have had a baby": The need to give an identity to the baby and legitimise grief'. CONCLUSION: The grief suffered after a perinatal death begins with the anticipation of the death, which relates to the mother's medical history, symptoms and premonitions. The confirmation of the death leads to emotional shock, characterised by pain and suffering. The chance to take part in mourning rituals and give the baby the identity of a deceased baby may help in the grieving and bereavement process. Having empathy for the parents and notifying them of the death straightaway can help ease the pain. Midwives can help in the grieving process by facilitating the farewell rituals, accompanying the family, helping in honouring the memory of the baby, and supporting parents in giving the deceased infant an identity that makes them a family member.
Camacho-Avila M; Fernandez-Sola C; Jimenez-Lopez FR; Granero-Molina J; Fernandez-Medina IM; Martinez-Artero L; Hernandez-Padilla JM
BMC Pregnancy and Childbirth
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/10.1186/s12884-019-2666-z" target="_blank" rel="noreferrer noopener">10.1186/s12884-019-2666-z</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
2020
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<a href="http://doi.org/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
Angels in the Clouds: Stillbirth and Virtual Cemeteries on 50 YouTube Videos
Photography; Qualitative Studies; Human; Descriptive Statistics; Music; Social Media; User-Computer Interface; Perinatal Death; Mothers -- Psychosocial Factors; Videorecording; Religion and Religions; Burial Practices
Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008 have been analyzed qualitatively. The videos, 70% published by the mother, with an average length of 5.52 minutes, a mean of 2,429,576 views and 2,563 of comments, follow a sort of script: the second part with black and white photos, background music, and religious references. Could the continuous access to the child's technological grave encourage a complicated grief or be a support, given by the interaction with users, limiting the sense of isolation. The parent shows his or her own conceptions about death and, as a modern baptism, presents the child to the whole society. Videos keep child's memory alive and fuel a process of personalization and tenderness in the user.
Sani L; Laurenti Dimanche AC; Bacqué MF
Omega: Journal of Death & Dying
2021
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<a href="http://doi.org/10.1177/0030222818824732" target="_blank" rel="noreferrer noopener">10.1177/0030222818824732</a>
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Paediatrics & Child Health
2021
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<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</a>
Interventions for siblings, extended family, and community members after pediatric death
perinatal death; efficacy; bereavement; No terms assigned; Pediatric death; support programs
The death of a child is felt by extended family, friends, and community members. Most bereavement care research focuses on programs for parents. Little is known about the efficacy of support programs for other grieving individuals. We conducted a scoping review of the literature describing the efficacy of bereavement support programs for siblings, extended family (other than parents), and community members after pediatric death. We found only four reports describing the efficacy of bereavement support programs for this population. All articles described benefits of the intervention studied. Overall, more rigorous and larger-scale studies are needed. (PsycInfo Database Record (c) 2020 APA, all rights reserved)
Pachalla S; Witting C; James K; Michelson KN
Journal of Loss and Trauma
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/10.1080/15325024.2020.1838778" target="_blank" rel="noreferrer noopener">10.1080/15325024.2020.1838778</a>
Experience of hope: An exploratory research with bereaved mothers following perinatal death
Bereavement; Hope; Hopelessness; Perinatal death; Qualitative research; Women
Problem The negative implications of perinatal death on mothers’ mental health are documented, however little is known about their experience of hope. Background Within the broader literature, hope has contributed to better mental health and bereavement adjustment and often bereaved mothers report the importance of hope for the grieving process. Aim This study aims to explore bereaved mothers’ experience of hope following perinatal death. Methods Individual interviews were conducted with 33 mothers having experienced the death of an infant in the perinatal period. Data from the interviews were analysed using thematic analysis. Findings The mothers’ experience of hope following perinatal loss is organized into three themes: Hope disrupted by perinatal loss; Transformed hope: a new pregnancy challenged by the sense of foreboding of another loss; and Ways to restore and foster hope in life. Discussion Although hope has been a motivating force for mothers to reconnect with their life plan and move on after a loss, it is also negatively affected by the experience of perinatal bereavement, social support, and health professionals’ clinical practice. Conclusion Bereaved mothers have reported a disruption in their experience of hope. While some experience a loss of hope or a sense of hopelessness, others experience a transformation and restoration of hope, which is reinvested in the grieving process. Mothers’ experience of hope highlights the need for the support of a healthcare professional and may contribute to enhanced clinical practice through the promotion of bereavement care, considering the aspects that instil, maintain, and interfere with hope.
de Andrade Alvarenga W; deMontigny F; Zeghiche S; Verdon C; Castanheira Nascimento L
Women and Birth
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/10.1016/j.wombi.2020.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.wombi.2020.08.011</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>
Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses
article; Belgium; burnout; controlled study; counseling; decision making; human; Likert scale; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; questionnaire; terminal care
Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. Design/participants: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. Results: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. Conclusion: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
Dombrecht L; Cohen J; Cools F; Deliens L; Goossens L; Naulaers G; Beernaert K; Chambaere K; Laroche S; Theyskens C; Vandeputte C; Cornette L; Van de Broek H
Palliative Medicine
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/10.1177/0269216319888986" target="_blank" rel="noreferrer noopener">10.1177/0269216319888986</a>
Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study
advance care planning; article; child; consultation; content analysis; conversation; decision making; Flanders; human; interview; law; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; privacy; qualitative research; uncertainty
Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. Objectives This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses. Methods We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators. Results Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging). Conclusions Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
Dombrecht L; Piette V; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Cornette L; Beernaert K; Cohen J
Journal of Pain and Symptom Management
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.jpainsymman.2019.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.10.007</a>
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
death and dying; bereavement; Male; Infant Newborn; Young Adult; Humans; Adult; Female; Infant; Interviews as Topic; Infant Mortality; Adaptation Psychological; Mothers/ psychology; Ghana; perinatal death; qualitative research; infant mortality; Grief; infant loss; low-resource country; Medically Underserved Area
Meyer AC; Opoku C; Gold K J
Omega (Westport)
2018
<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">10.1177/0030222816629165</a>
Managing Ambiguity: Nurses Caring for the Mother of a Stillborn Baby
Human; Grief; Interviews; Grounded Theory; Perinatal Death; Audiorecording; Constant Comparative Method; Life Experiences -- Evaluation; Obstetric Nursing
Purpose: The aim of this study was to describe and conceptualize the experiences and processes involved when labor and delivery nurses provide care to women experiencing a stillbirth. Background: The care of a woman experiencing a stillbirth is an important topic that requires attention, however, there is a paucity of literature on the specifics of a nurse's experience as she or he cares for a grieving mother. These experiences may shed light on gaps in care that may exist as well as gaps in the resources, education and support needed to appropriately prepare nurses for providing care to a mother at such a difficult and vulnerable time. Stillbirth is increasingly referred to in the literature as a traumatic death, unexpected and unplanned, resulting in post-traumatic stress responses. Understanding what the bedside nurse does, thinks, and feels during these moments of traumatic bereavement will contribute to a greater understanding of the nurse's experience of providing care to a patient. Method: This study used a grounded theory approach. Data were collected via in-depth interviews with 20 labor and delivery nurses. Each interview session was recorded, transcribed verbatim, and analyzed using the constant comparative method of analysis. Results: Based on the inductive method of grounded theory and a thorough comparative analysis of the data, the theory Managing Ambiguity emerged as the basic social process of how nurses struggle to care for a mother whose baby was stillborn. This theoretical underpinning summed up the substance of what was occurring when nurses cared from a mother experiencing a stillbirth and was characterized in three different categories by labor and delivery nurses as Experiencing a spectrum of emotions, Managing the ambiguous patient, and Managing institutional ambiguity. These factors contributed to the overall ambiguity the nurse had to manage when providing care for the patient whose baby was stillborn and became the three main categories of the overall theory. Conclusions: This theory of Managing Ambiguity provided a perspective on the experiences, behaviors, and social processes involved in caring for a woman delivering a stillborn baby. This theory also provided insights into how the interactions between the nurse and herself, the nurse and the patient, and the nurse and her environment impacted the process and the meaning of the event. The importance of this study is the resulting understanding of factors that impede and enhance the process of providing care to a mother whose baby was stillborn. Feelings of uncertainty, ambiguity, and discomfort must be addressed at the nursing education and nursing leadership levels.
Nurse NJ
Managing Ambiguity: Nurses Caring For The Mother Of A Stillborn Baby
2018
All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. Methods: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Acta Paediatrica, International Journal of Paediatrics
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/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
congenital abnormality; Bereavement; Bereavement; Female; Humans; Infant; Interviews as Topic; Male; Newborn; Parents; Parents/ psychology; Pregnancy; Qualitative Research; Twins; palliative care; qualitative; Perinatal Death; Qualitative research; female; male; perinatal death; bereavement; Twins; twins
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period. DESIGN: A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews. RESULTS: Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing. CONCLUSIONS: Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
Meaney S; Corcoran P; O'Donoghue K
Journal of Palliative Medicine
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="http://doi.org/10.1089/jpm.2016.0264" target="_blank" rel="noreferrer noopener">10.1089/jpm.2016.0264</a>
Risk factors for perinatal death in two different levels of care: a case–control study
Risk Factors; Care levels; Maternity; Perinatal death
According to the World Health Organization, there are over 6.3 million perinatal deaths (PND) a year worldwide. Identifying the factors associated with PND is very helpful in building strategies to improve the care provided to mothers and their babies. PMID: 24476422
2014-01
Silveira Soares Moura PM; Maestá I; Rugolo Lígia Maria Souza Suppo; Angulski LFRB; Caldeira AP; Peraçoli JC; Rudge MVC
Reproductive Health
2014
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).
Journal Article
<a href="http://doi.org/10.1186/1742-4755-11-11" target="_blank" rel="noreferrer">10.1186/1742-4755-11-11</a>
Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
Birth Weight; Patient Discharge; Artificial; Cardiotonic Agents/therapeutic use; Congenital/etiology; Female; gestational age; Heart Defects; Humans; infant; infant death; Intensive Care Units; Length of Stay; Live Birth; Male; Neonatal; Newborn; Perinatal Death; Respiration; Sex Factors; Survival Rate; Tertiary Care Centers; Trisomy 18 Syndrome/complications/ therapy; United States
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed the initial hospital course, management, and factors predicting discharge from the hospital from two large tertiary care neonatal intensive care units in the southern United States over 26 years. Results Of the 29 infants with trisomy 18, 21 (72%) died in the hospital and 8 (28%) were discharged home. 19 (66%) infants received mechanical ventilation and 10 (34%) received inotropic medications. Eight infants had critical congenital heart defects; only one survived to discharge. Three infants underwent major surgeries; one cardiac surgery, one tracheoesophageal fistula repair, and one myelomeningocele repair. Median length of hospital stay was 14 days (range, 0-78) for all the infants and 31 days (range, 18-66) for those that were discharged home. Factors associated with discharge from the hospital were female sex, higher gestational age, and absence of critical congenital heart defects. Median survival time was 13 days and was significantly longer for females compared with males. Our 1-month and 1-year survival rates were 31% and 3.9% respectively. Conclusion A significant proportion of infants with trisomy 18 were discharged home. These data are helpful in counseling parents of infants with trisomy 18.
2017-02
Dereddy NR; Pivnick EK; Upadhyay K; Dhanireddy R; Talati AJ
American Journal Of Perinatology
2017
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<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">10.1055/s-0036-1586753</a>
The experiences and needs of healthcare professionals facing perinatal death: A scoping review
Health Services Needs and Demand; Stillbirth; experiences; Female; healthcare professionals; Health Personnel/ psychology; Humans; Maternal Health Services/ manpower; Maternity care; Needs; Perinatal Death; Pregnancy; Scoping review
BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses and a few doctors in critical care, oncology, and neonatology in the West. Due to the unique setting of maternity units where death is not routinely anticipated, as well as distinctive socio-cultural views surrounding death, there is a need to comprehensively review literature examining the impact of perinatal death on the perspectives of healthcare professionals working in maternity units. OBJECTIVES: To examine available literature on the needs and experiences of healthcare professionals working in maternity units who have experienced perinatal death. DESIGN: A scoping review of published and unpublished data. DATA SOURCES: A systematic literature search from 1st January 1996 to 5th August 2016 was made in the following databases: PubMed, CINAHL, Embase, PsycINFO, ScienceDirect, and Web of Science. Cochrane Library, Joanna Briggs Institute Library of Systematic Reviews, York Centre for Reviews and Dissemination, Open Grey, ProQuest Dissertation and Theses, and Mednar were reviewed for grey literature. A hand search of the reference lists of the included papers was performed. REVIEW METHODS: Based on the pre-set inclusion criteria, 1519 articles were screened for their titles and abstracts. Eighty-five full-text papers were reviewed, resulting in 30 papers included for this review. The data were extracted and cross-checked between the reviewers. Any discrepancy between the authors' views would be discussed with a third reviewer until consensus was reached. Thematic analysis was used to categorise the results into themes. RESULTS: Two major themes emerged from the review: the experiences and needs of healthcare professionals. Six subthemes emerged from the experiences of healthcare professionals: 1) psychological impact, 2) physical impact, 3) positive feelings, 4) coping strategies, 5) personal factors influencing the experience, and 6) cultural factors influencing the experience. Three subthemes including 1) social support, 2) training and education, and 3) other needs explained the needs of healthcare professionals. Studies focusing on the experiences and needs of physicians were scarce. CONCLUSIONS: Perinatal death has a profound impact on the psychological and physical wellbeing of healthcare professionals. They have unmet needs that need to be addressed. Though they use internal and external resources to combat their stress, institutional support acknowledging their stress and their needs is essential. Culturally-sensitive education and training are needed to provide support to these professionals.
Shorey S; Andre B; Lopez V
International Journal Of Nursing Studies
2017
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<a href="http://doi.org/10.1016/j.ijnurstu.2016.12.007" target="_blank" rel="noreferrer">10.1016/j.ijnurstu.2016.12.007</a>
The presence and predictors of complicated grief symptoms in perinatally bereaved mothers from a bereavement support organization
Bereavement; Grief; Adult; bereavement; Female; Grief; Humans; Middle Aged; Mothers/ psychology; Perinatal Death; Young Adult
The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally bereaved mothers (N = 121) up to 5 years postbereavement. The presence of complicated grief scores in the clinical range was 12.4%, which is higher than in many other bereaved populations, and the presence of other living children may protect against the development of complicated grief symptoms. The majority of the women were able to negotiate a perinatal loss without developing complicated grief; however, there remains an important group of women who up to 5 years later score in the clinical range for complicated grief symptoms.
McSpedden M; Mullan B; Sharpe L; Breen LJ; Lobb EA
Death Studies
2017
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<a href="http://doi.org/10.1080/07481187.2016.1210696" target="_blank" rel="noreferrer">10.1080/07481187.2016.1210696</a>
Losing Thomas & Ella: A Father's Story (A Research Comic)
Graphic Novels as Topic; Grief; perinatal death; stillbirth; Comics-based research; Death; Fathers; Fathers/ psychology; Grief; Humans; Male; Narration; Narrative research; Perinatal Death; Qualitative Research; Research comics; Sequential art; stillbirth
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of anger, distance, relationship stress, self-blame, religious challenges, and resignation. A methodological appendix explains the process of constructing the comic and provides a rationale for the use of comics-based research for illness, death, and grief among practitioners, policy makers, and the bereaved.
Weaver-Hightower MB
Journal Of Medical Humanities
2017
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<a href="http://doi.org/10.1007/s10912-015-9359-z" target="_blank" rel="noreferrer">10.1007/s10912-015-9359-z</a>
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Salud Publica De Mexico
2015
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</a>
A survey of the experiences of families with bereavement support services following a perinatal loss
Bereavement Services; Experiences; Loss; Mothers; Perinatal Death; Survey
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement services utilised by families who have experienced a perinatal loss, and explore the impact of these services on the families’ bereavement journey.
Methods: Women who experienced a perinatal loss were sent a survey consisting of the modified Perinatal Post Traumatic Stress Disorder (PTSD) questionnaire, items addressing use of bereavement services, and the Inventory of Complicated Grief. Respondents also provided free-text comments.
Results: Forty-seven women were included in the study (34% response rate); 75% had a perinatal PTSD score which indicated the need for support from mental health services and 75% accessed services. Forty-three percent met the criteria for complicated grief. Women whose PTSD scores were in the highest quartile were most likely to access services; 45% of surveyed women used SIDS and Kids of the Australian Capital Territory (SKACT) accessing counselling (90%), support groups (50%), playgroups (15%) and the helpline (10%). Fifty-seven percent of women surveyed accessed non-SKACT services and predominantly used psychologists (66%) and general practitioners (30%). Requests were made for grief training of hospital staff, and for referral to bereavement services to be offered after hospital discharge.
Conclusions: Following a perinatal loss, a high proportion of women had high PTSD scores and complicated grief despite utilising local bereavement services. Our findings support the continuation of current support services with modifications that may potentially improve recovery following a perinatal loss.
Inati V; Matic M; Phillips C; Maconachie N; Vanderhook F; Kent AL
The Australian & New Zealand Journal Of Obstetrics & Gynaecology
2017
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<a href="http://onlinelibrary.wiley.com/doi/10.1111/ajo.12661/abstract" target="_blank" rel="noreferrer">10.1111/ajo.12661</a>
Exploring perinatal death with midwifery students' using a collaborative art project
Grief; Perinatal Death; Affective Learning; Artist; Collaborative Artwork; Education Nursing; Female; Humans; Infant Newborn; Ireland; Midwifery/ Education; Midwifery Students; Mothers/psychology; Parents; Perinatal Death; Pregnancy; Students Nursing
OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews following institutional ethical approval. SETTING: A regional Maternity Hospital in Ireland which hosted the National Artwork and Exhibition exploring the hidden world of infant death. PARTICIPANTS: A purposive sample of six consenting post registration midwifery students who had attended the Amulet artwork and exhibition. FINDINGS: Four core themes emerged and these were i) entering the mother's world and hearing her pain; ii) the journey of grief and connecting with the bereaved parent's unique experience; iii) facing the challenge of providing effective perinatal bereavement care; and iv) maintaining a journey of compassionate practice. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Exposure to, and reflection on the Amulet artwork and exhibition increased students' awareness and insight into the non-linear nature of the grieving process, and to the importance of maintaining a journey of compassionate care for parents experiencing perinatal death. The findings suggest that the use of creative women-centered strategies promote affective learning in relation to perinatal death and so may be of use to educators and maternity care providers. Copyright © 2016 Elsevier Ltd. All rights reserved.
Barry M; Quinn C; Bradshaw C; Noonan M; Brett M; Atkinson S; New C
Nurse Education Today
2017
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<a href="https://doi.org/10.1016/j.nedt.2016.09.004" target="_blank" rel="noreferrer">10.1016/j.nedt.2016.09.004</a>
Assessing the quality of bereavement care after perinatal death: development and piloting of a questionnaire to assess parents' experiences
Stillbirth; Bereavement Support; Grief; Perinatal Death; Pilot Study; Questionnaire
Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents, and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as 'very important' by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8% and 15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents' responses identified areas for improvement including greater involvement of partners and a need for timely information. Impact statement What is already known on this subject?: Good quality bereavement care after perinatal death reduces the negative emotional, psychological and social effects for parents. Description of parents' experiences is a potential means to improve the quality of perinatal bereavement care. What do the results of this study add?: Parents' needs and experiences of care after perinatal death were recorded using a patient-experience questionnaire designed by a multi-professional team and parents. Staff behaviour, particularly sensitivity and kindness was highly valued by parents. Giving both verbal and written information could be improved. Training is needed for professionals, particularly those who come into contact with bereaved parents less frequently. What are the implications of these findings for clinical practice and/or further research?: Description of parents' priorities and views can be used to identify areas for improvement in perinatal bereavement care. Parents' views should be regularly sought and used to develop local services in an iterative process.
Aiyelaagbe E; Scott RE; Holmes V; Lane E; Heazell AEP
Journal Of Obstetrics And Gynecology
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).
DOI: 10.1080/01443615.2017.1316710
Developing A Perinatal Memory-making Program At A Children's Hospital
Child Health; Female; Hospice Care/methods; Hospice Care/psychology; Hospitals; Humans; Infant Newborn; Memory; Perinatal Death; Postnatal Care/psychology; Pregnancy
events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations is to assist them by creating memories of their child to help ease perinatal grief. This article describes the Precious Prints Project, a perinatal memory-making program designed to comfort families grieving the loss of a child. We discuss the development and implementation of this project, explore the literature, and show the strategies used to address the challenges encountered.
Miller LH; Lindley LC; Mixer SJ; Fornehed ML; Niederhauser VP.
American Journal Of Maternal/child Nursing
2014
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: 10.1097/NMC.0000000000000016
The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care
End-of-life Care; Hospice Organisation; Nursing Administration; Nursing Leadership; Nursing Staff
Delivery Of Health Care; Female; Fetal Death; Hospice And Palliative Care Nursing; Hospices/statistics & Numerical Data; Humans; Infant; Perinatal Care; Perinatal Death; Pregnancy; Retrospective Studies; Surveys And Questionnaires; Transcultural Nursing; United States; Workplace
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses. OBJECTIVE: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. METHOD: This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers. A multivariate logistic regression model was used to estimate the relationship between the delivery of culturally sensitive care and the nurse work environment. RESULTS: Accreditation, teaching status, and baccalaureate-prepared registered nurse staff had an impact on the provision of culturally sensitive perinatal care Conclusions: The hospice and nursing unit environments, specifically in regards to education and technology, may be important contributors to the delivery of culturally sensitive care.
Mixer Sandra J; Lindley L; Wallace Heather; Fornehed Mary Lou; Wool Charlotte
International Journal Of Palliative Nursing
2015
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10.12968/ijpn.2015.21.9.423
Changes In Perinatal Hospital Deaths Occurring Outside The Neonatal Intensive Care Unit Over A Decade
Ethics; Neonatology; Outcomes; Palliative Care; Perinatal Death
AIM: Perinatal deaths occurring outside the neonatal intensive care unit (NICU) are rarely recorded in outcome studies, despite having a direct impact on perinatal statistics. Our aim was to investigate the timing and modes of perinatal deaths that occurred outside the NICU and changes over time. METHOD: We reviewed all perinatal deaths from 22 weeks of gestation onwards, without NICU admissions, during two periods in a Canadian tertiary mother and baby hospital and categorised deaths according to nine specific categories. RESULTS: There were 444 perinatal deaths that satisfied the inclusion criteria. The total number of perinatal deaths increased from 2000 to 2002 (n=197) and 2007 to 2010 (n=247). The proportion of fetuses alive at the time of their mother's hospital admission, but then stillborn, decreased. There was a significant increase in terminations for congenital anomalies in the second cohort, and a decrease in deaths following induction of labour and comfort care for fetal anomalies. CONCLUSION: Approaches to end of life care changed between the two study periods. Paediatricians should be aware of the epidemiology of perinatal mortality in their own practice, as it has a direct impact on the denominator in NICU outcome studies. This article is protected by copyright. All rights reserved.
Du Pont-Thibodeau Amélie; Barrington K; Taillefer Catherine; Janvier A
Acta Paediatrica
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).
10.1111/apa.13884
Updated Perinatal Palliative Standards Emphasise Choice And Bereavement Support
Bereavement; Palliative Care/st [standards]; Perinatal Death; Female; Humans; Infant Newborn; Neonatal Nursing; Palliative Care/ma [manpower]; Practice Guidelines As Topic; Pregnancy; United Kingdom
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
Evans N
Nursing Children And Young People
2017
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10.7748/ncyp.29.5.8.s8
Adequacy Of Palliative Care In A Single Tertiary Neonatal Unit
End Of Life Care; Palliative Care; Death; Neonatal; Perinatal Death; Infant; Parents; End Of Life Care; Child; Palliative Care; Narcotics; Hospice Care; Pediatrics
Aim: End-of-life care remains within the scope of practice of all neonatal units. There is a paucity of literature regarding the evidence-base for palliative care interventions in the perinatal or neonatal population (Balaguer).
Little is published regarding neonatal end-of-life care in Australia (Wilkinson). This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service.
Methods: This retrospective cohort study examined indicators of quality palliative care provided to forty-six infants born within a thirty-month period from January 2012 to June 2014. Included infants were liveborn, admitted to the Royal Brisbane and Women's Hospital at some time in their life and died prior to one year of age. Infants were excluded if there was no opportunity for palliative care. Indicators of quality palliative care assessed included communication, resuscitation planning, preferred location of death, symptom management, symptom management plan, multi-disciplinary team approach, caring for carers, memory making, spiritual care and bereavement care. Interventions were characterised using descriptive statistics.
Results: The most common causes of death were congenital abnormality (37%) and complications of extreme prematurity (22%). Very high proportions of infants and families had family meetings (100%), social worker involvement (100%), memory making opportunities (100%) and discussion of autopsy (91%). Opiates were prescribed to 78% in the last day of life; most (89%) were administered intravenously. For those prescribed opiates, the median parenteral morphine daily equivalent was 290 mcg/kg/day (interquartile range = 317) in the last 24 hours of life. Antenatal resuscitation planning for fetuses with a prenatal diagnosis (9%), discussion of preferred location of death (9%), communication with general practitioners (7%) and access to specialised bereavement care (3%) were infrequently provided. Palliative care consultation was sought infrequently (n = 4; 8%), precluding formal statistical comparison with the usual neonatal care cohort. The relative number of instances where indicators of quality palliative care were met was generally greater when palliative care was consulted.
Conclusions: At the time of this study, the neonatal unit was not meeting all of the end-of-life care needs of infants and their families. Care was more comprehensive when the palliative care service was consulted.
Gilmour D; Davies M; Herbert A
Journal Of Paediatrics And Child Health
2016
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<a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jpc.13245_16">10.1111/jpc.13245_16</a>
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
Xafis V; Watkins A; Wilkinson D
Patient Education And Counseling
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).