Browse Items · Pediatric Palliative Care Library

Continuing bonds in parents after a loss in pregnancy, or a death at or shortly after birth: A population-based study

In this study, we describe continuing bonds and grief reactions and assess their association in 980 parents bereaved in pregnancy, at or shortly after birth. We found that most parents experienced continuing bonds. However, they differed by type of…

Camp Draws You Back Into Life Again: Exploring the Impact of a Therapeutic Recreation-Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had…

THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON

Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended…

HELPING THE HELPERS - SUPPORT IN CHILD BEREAVEMENT FOR PAEDIATRIC HEALTH CARE STAFF

Objectives Around 70% of children with life-limiting conditions will die in hospital,1 meaning many paediatric staff will encounter death during their clinical duties. Observing and experiencing grief around a child's death can have a detrimental…

New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the…

Assessing Pediatric Resident Needs in Grief and Bereavement Education

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…

First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review

Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without…

Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis

Abstract The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two…

Care, connection, and social distancing: The challenges of baby loss during the COVID-19 pandemic in Aotearoa New Zealand

Problem: The COVID-19 pandemic hindered access to routine healthcare globally, prompting concerns about possible increases in pregnancy loss and perinatal death. Background: PUDDLES is an international collaboration exploring the impact of the…

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital

Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare…

A Review of Parental Bereavement Interventions: Implications for Clinical

The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This…

Parental quality of life as an outcome of specialised paediatric palliative care: results of the SPhAERA study

Background: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex…

Tags: 2024, Adolescent, Anne-Kathrin G, August List 2024, Bereavement, Caregiver, Child, Comparative Effectiveness, conference abstract, Eva B, Health Care Personnel, Human, Karin Z, longitudinal study, Major Clinical Study, Male, Palliative Therapy, Quality Of Life, Swiss Medical Weekly

Understanding PICU Mortality and Family Bereavement: A Singlr- Canter Qualitative Study

INTRODUCTION: Pediatric mortality is an often underestimated and overlooked figure but has significant impact on providers and families. University Hospitals Rainbow Babies and Children has launched a program to identify factors surrounding pediatric…

Bereavement, Palliative, and End-of-Life Education Needs Assessment

INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's…

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive…

Exploring Bereavement in Pediatric Nursing: A Systematic Review

Introduction: The management of parent’s and family’s bereavement, before, during and after the death of a child is a great challenge for health care professionals (HCPs). Aim: The purpose of this study was to investigate bereavement in pediatric…

Nursing Perspective of Providing Palliative Care to the Children—A Narrative Review

Introduction Palliative care of children (PCC) is a philosophical and a structured approach to providing tailored care to children with life-threatening diseases. Understanding the role of nurses and empowering them to take up the role of palliative…

Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study

Abstract Background: Evidence to guide intrapartum care when an unborn baby has died is limited. Aims: To explore parents' experiences of care during labour of an antepartum stillbirth. Materials and methods: Semi-structured interviews with 18…

Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death

Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does…

Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child

After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we…

Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review

Background: Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short-…

Tags: 2024, Bereavement, Death, Infant, Journal Of Palliative Care, June List 2024, Kung J, Kunyk D, Lakhani J, Mack C, neonatal intensive care, parental, van Manen M

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where…

Bereaved Parents' Change in Mental Health during a Dyadic Diary

Recent years have seen a shift in the number of bereavement studies examining daily grief processes, but our knowledge is still limited due to the lack of dyadic research. In this paper, we explored the change in mental health in the course of a…

The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care

Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the…

Professional bereavement photography for perinatal loss: A mixed-methods study

Abstract This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward…

Perinatal Bereavement in Racially, Culturally, and Gender Diverse Families

Abstract Perinatal loss, the tragic event of losing a baby before, during, or shortly after birth, is a profoundly distressing experience for any family. We focus on the unique challenges faced by diverse families, encompassing those from…

Improving family grief outcomes: A scoping review of family-based interventions before and after the death of a child

Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate…

Cultivating Gratitude in Bereaved Families: Understanding the Impact of the Bereavement Workshop on the Families of Deceased Patients in the Pediatric Palliative Care Program

Abstract Background Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care…

Effect of Sustaining a Perinatal Loss: Mothers’ Mental Health and Marital Satisfaction

Abstract The occurrence of perinatal losses is an unfortunate, yet common degeneracy that implements perturbing taxation on the mental, emotional, and marital health of mothers considering the grief they impose. This study is a quantitative venture…

Social work practice in perinatal palliative care: an overview

Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning…

Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process

Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods:…

The most painful estrangement: Death at birth

More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense,…

Palliative care for children: methodology for the development of a national clinical practice guideline

Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need…

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are…

Development of an Institution-Wide Pediatric End-of-Life Summit

End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized…

Tags: 2023, Abecassis L, Article, Beke DM, Bereavement, Child, Clinician, Edson J, February List 2024, Human, Journal of Hospice and Palliative Nursing, McGorman T, Medical Society, School Child, special situation for pharmacovigilance, teaching hospital, Terminal Care

“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents

Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first…

Tags: 2023, 2023 SE3 - Oncology, Baker JN, Bereavement, Broden E, Child, Decisional regret, Feifer D, Journal of Pain and Symptom Management, Parent, Parents, Pediatric Cancer, Snaman J, Wolfe J

Nursing care and nurses' understandings of grief and bereavement among patients and families during cancer illness and death – A scoping review

Grief and bereavement is often present among patients and families during courses of cancer. Offering support for both patients and families is essential in the context of cancer nursing. Present scoping review offers an overview of existing…

Tags: 2023, 2023 SE3 - Oncology, Bereavement, European Journal Of Oncology Nursing, Fiala CAM, Larsen P, Madsen R, Marcussen J, Nursing Care

Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning

PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed…

Tags: 2023, 2023 SE3 - Oncology, Baker JN, Bereavement, Child, Clark L, Feifer D, Helton G, JCO Oncology Practice, Mazzola E, Morris SE, Only Child, Snaman JM, Wolfe J

Factors associated with mental health service use among families bereaved by pediatric cancer

OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.…

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