PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were…
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all…
Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the…
This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group…
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with…
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on…
Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using…
To enhance understanding of parental relationships following the loss of a child, a questionnaire was sent to members of Norwegian bereavement support organizations. The sample consisted of 175 couples. Using the Dyadic Adjustment Scale (DAS), we…
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13…
Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of…
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK…
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling…
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month…
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…
The death of a child is a tragic, devastating event with enormous emotional and relational impact on the family unit. Parental changes are significant, encompassing the psychological, physical, spiritual, and interpersonal realms. Little bereavement…
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…
Given the massive influences of COVID-19 restrictions on people in nearly all nations, we conducted an in-depth qualitative study of 15 Belgian parents who had lost a child prior to the pandemic in order to understand its impact on their ongoing…
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my…
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is…
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…
OBJECTIVE: Losing a child is burdensome with potential long-term impact on the parents' well-being and quality of life. The aim was to investigate parental well-being and quality of life 3-5 years after losing a child due to life-limiting diagnoses…
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family.…
A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to…
Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more…
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored.…
Objective: The study aimed to identify and map the factors that shape the delivery of hospital-based lactation care for bereaved mothers to inform quality improvement initiatives targeting hospital-based lactation care. Methods: Focus groups and…
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs…
Purpose Research shows that knowledge about mental health status, both protective and risk factors, is limited in cancer-bereaved parents. The study aimed to investigate (1) the extent of psychological distress in bereaved parents 2–8 years after the…
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1)…
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a…
Objective The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. Design Scoping review…
AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content…
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support…
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences…
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of…
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
OBJECTIVES: This systematic review aims to assess the effectiveness of bereavement support interventions (BSIs) for parents of an infant or a child who has died from a medical condition or in unforeseen circumstances. METHODS: A systematic search of…
