Browse Items (41 total)

BACKGROUND: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children's care becomes the central focus of family life. Inadequate support for parents is…

Rett Syndrome (RS) is a neuro-developmental disorder, predominantly affecting females, resulting in severe mental retardation and neuro-behavioral disability. Some RS theoreticians hypothesize that behaviors that are neurologically driven are not…

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative,…

Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer.…

OBJECTIVE: To determine the effectiveness of a psycho-educational group intervention for chronically ill children. METHODS: Based on principles from cognitive behavior therapy and information from previous research about children's experiences with…

OBJECTIVE:Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has…

A nurse wishes her son and family had received it after his cancer diagnosis.

Introduction. Hypoplastic left heart syndrome was uniformly fatal until the 1980s but now has survival approaching 70% to age 5 due to treatment advances. The current study was undertaken to examine trends in the intervention rate, survival, and…

ABSTRACT: BACKGROUND: Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep…

The alleviation of symptoms, with the ultimate intention of improvement of quality of life, is a fundamental component of pediatric palliative medi-cine. Psychological factors can exacerbate physical symptoms or influence the perception of symptoms…

OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for…

OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their…

Objective To review empirical studies of the efficacy of psychological interventions as adjuvanttherapies for children with pediatric diabetes, cancer, cystic fibrosis, and sickle celldisease. Methods A search was conducted for qualifying studies…

PURPOSE OF REVIEW: Nonadherence to medical treatment is a significant problem for adolescents with chronic illness, with significant morbidity and mortality. Yet efforts to assess and treat the problem have been limited. We reviewed the literature on…

AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.…

Family management styles (FMSs) explain some of the complexities embedded in a family with a child who has chronic illness. The FMS typologies provide descriptions of family adjustment and management of care. These 5 distinct patterns may be valuable…

The aim of this study was to systematically review and critically appraise the evidence on the effectiveness of hypnosis for procedure-related pain and distress in pediatric cancer patients. A comprehensive search of major biomedical and specialist…

OBJECTIVE: To compare the effect of eutectic mixture of local anaesthetics (EMLA) and a placebo cream on reported pain and observed distress associated with venepuncture, and to investigate effects of procedural information before and distraction…

INTRODUCTION: This intervention study examines anxiety and uncertainty in illness in families transferring from intensive care to a general ward. METHODS: The pre-test, post-test design purposively allocated family members to a control (n = 80) and…

We have previously identified the phrase 'rheumatoid cachexia' to describe the loss of body cell mass (BCM) that may occur among patients with rheumatoid arthritis (RA). Specifically, rheumatoid cachexia is characterized by altered energy and protein…

BACKGROUND: The role of psycho-educational interventions in facilitating adaptation to chronic disease has received growing recognition and is in keeping with policy developments advocating greater involvement of patients in their own care. The…

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…

The provision of bereavement support for parents who have lost a child is based on the assumption that it will lead to better subsequent adjustment. To determine the validity of this assumption, a systematic review of studies was undertaken, looking…

An increasing body of research suggests that the death of a child results in a unique form of bereavement for surviving parents. A study reviewed research findings on parental bereavement, including those from the author's ongoing longitudinal study.…

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…

OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and…

It is currently believed that effective intervention programs can reduce the negative consequences of stressful life events. The purpose of this paper is to describe a three-step process used to develop a theory-based preventive intervention for…

The article presents a rationale for and components of a developmental systems model to guide early intervention programs for vulnerable children and their families. Core principles emphasizing a developmental framework, integration, and inclusion,…

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

A diagnosis of childhood cancer is an unexpected life event that often precipitates a situational crisis for all family members. Required cancer treatments and other ongoing stressors for both child and family will significantly disrupt the family's…

Abstract Background: The use of propofol for palliative sedation of children is not well documented. Objective: Here we describe our experience with the use of propofol palliative sedation therapy (PST) to alleviate intractable end-of-life suffering…

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…
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