Browse Items (134 total)

OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…

BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based…

BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…

Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more…

OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of…

OBJECTIVE: This study evaluated the Impact on Sibling scale, a six-item measure of parents' perception of the effects of a child's illness on healthy siblings. METHODS: Participants were 122 parents of a child with chronic illness, developmental…

As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents…

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

BACKGROUND: Chronic disease of childhood may have implications for the psychosocial well-being of children and their families. The purpose of this paper is to provide an overview of the current literature regarding the psychosocial well-being of…

In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…

BACKGROUND: Although some studies suggest that parenthood is associated with a reduced suicide risk, the impact of children on parental suicide has rarely been documented. METHODS: This study investigates the impact of parental status on the risk of…

Aims and objectives
To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Background

Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy…

Results of a longitudinal study of the effects of bereaved parents' participation in a self-help group and in psychotherapy are presented. Active self-help group participants evidenced unique changes in attitudes about bereavement. Reasons for lack…

A core dynamic by which grief is resolved by parents in Bereaved Parents, a self-help group, is a series of transformations of the inner representation of the dead child in the parent's inner world and in the parent's social world. As the reality of…

The belief that loss can result in growth has been hypothesized for centuries.Yet, traditional grief theories have viewed grief work as a process of resolving grief and returning to normal. Formal conceptualizations of grief to growth models have…

BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child. METHODS: In 2001, we attempted to contact all parents in Sweden who had…

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western…

BACKGROUND: The stress levels of parents of children with chronic illness/disability who were also involved in an enteral feeding programme were examined and compared to the stress levels of parents of healthy children and parents of children with…

Research into stillbirth memento photography shows the practice to be welcomed by the bereaved. The visual attributes and content of stillbirth memento photographs are yet to be rigorously analysed however, representing a significant gap in current…

Sleep disorders were investigated in 40 children with tuberous sclerosis (TS) and compared with those found in non-disabled children and those reported in a mixed group with learning disabilities. Significantly higher levels of sleep disturbance were…

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…

Recent research has indicated that many people faced with highly aversive events suffer only minor, transient disruptions in functioning and retain a capacity for positive affect and experiences. This article reports 2 studies that replicate and…

BACKGROUND: There is tension around the notion of research with bereaved parents. While it is recognised that the care of children with palliative care needs will only improve with better understanding of parent perspectives, the vulnerability of…

OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of…

BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…

OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were…

Rarely do paediatric palliative medicine physicians have to break the news of a diagnosis of a life-limiting condition. It is much commoner for us to be faced with the question: "how long?". This cannot be answered with certainty, and yet a great…

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…

Dramatic improvements in the hospital management of perinatal loss have taken place in the past 20 years. However, there has been no critical examination of current approaches. Four possible hazards of current hospital practice are described: 1)…

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal…

PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of…

BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision…

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…
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