Browse Items (132 total)

BACKGROUND: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. OBJECTIVE: The objective of this systematic review was to…

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…

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness…

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,…

STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a…

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored…

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…

Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train…

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…

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles…

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…

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…

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…

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in…

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This…

In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all…

SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…

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…

Intensive aggressive medical therapy does not always result in cure. For some neonates it is a futile exercise that may prolong a short life of suffering. In this article, we will discuss the babies for whom aggressive therapy may not be appropriate,…

The death of an adolescent is a particularly complex issue. The process of grieving and coping can be complicated by the tension that may have existed in the parent/child relationship because of the conflict in terms of personal ideology at this…

BACKGROUND: Health professionals have a critical role in supporting bereaved parents and rely on models of grief to inform and guide their practice. However, different models, based on fundamentally different theoretical perspectives and research…

The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and…

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

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…

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine…

The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes…

Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…

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.…

OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…
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