Browse Items (273 total)

BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have…

BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings…

Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose…

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…

The Grief Experience Inventory (GEI) and the MMPI were used to assess bereavement reactions in 102 newly bereaved individuals; 107 controls were also assessed. Intensities of bereavement reactions were compared across three types of deaths…

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care…

Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…

PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the…

OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We…

OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for…

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…

CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to…

BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and…

The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions…

CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book…

Most pediatricians have experienced uneasy interactions involving patients and/or their parents. The majority of literature on this topic reflects encounters in adult medicine, without providing much information for pediatricians who also face this…

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…

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to…

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a…

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…

Examined the function of The Compassionate Friends (TCF), a self-help group for effective intervention in the severe bereavement after the death of a child, using a participant observation research method. Three decisions form the framework of the…

The article presents a discussion between bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center and interdisciplinary pediatric palliative care clinicians about the coexistence of hope and realism.…

OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…

Developmental changes in children's acquisition of death concepts and in their emotional reactions are reviewed. Moderating variables that may affect the nature of grieving processes after parental or sibling death are discussed, including…

This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal…

If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…

OBJECTIVE: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it…

BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are…

OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with…

This study explored parental self-identity at 6, 12, and 18 months following the death of a child to cancer. Semi-structured interviews were analyzed using qualitative methodology. Two patterns of parental self-identity emerged: identity…

IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…
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