Browse Items (77 total)

BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent…

BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of…

Problem: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The…

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…

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…

Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated…

PURPOSE: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed…

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

BACKGROUND: The purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24…

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process.…

OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The…

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…

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third…

AIM: This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family…

AIM: To determine the prevalence and associations of self-reported and parent-reported pain in children with cerebral palsy (CP) of all severities., METHOD: Cross-sectional design using a questionnaire; analysis using ordinal regression. Children…

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

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…

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…

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

In this chapter we review theoretical and empirical advances in research on adolescent development in interpersonal and societal contexts. First, we identify several trends in current research, including the current emphasis on ecological models and…

The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the…

PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted…

Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study…

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this…

Pain assessment is a difficult task for parents at home following children's surgery. The purpose of the present study was to confirm the psychometric properties of a behavioural measure of postoperative pain developed to assist parents with pain…
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