Browse Items (62 total)

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…

In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for…

Prenatal diagnosis of a lethal anomaly is a monumental moment in a family's life. It requires extensive team counseling and planning about complex neonatal and obstetric medical management. The construct of palliative care with its focus on…

Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and…

The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…

STUDY OBJECTIVES: More than two thirds of family members visiting intensive care unit (ICU) patients have symptoms of anxiety or depression during the first days of hospitalization. Identifying determinants of these symptoms would help caregivers…

Using a collective case study ethnographic approach, nine individuals comprising three Mexican American families were interviewed about their family bereavement experiences after the death of a child. All families were Catholic, had surviving…

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…

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…

PURPOSE OF REVIEW: To describe recent research that examines family factors that promote or derail adherence to medical regimens for children with chronic health conditions, primarily asthma, diabetes, and cystic fibrosis. From the past 2 years,…

Seventy-one couples living in a stepfamily context reported interpersonal family stressors and related coping strategies daily for 1 week in a daily process study. The role of personality and of the stressful context in each of the spouse's coping…

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…

OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The…

Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and…

BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a…

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has…

OBJECTIVE: To assess resource utilization and outcome in gravely ill patients admitted to an intensive care unit (ICU) and the potential association with health care workers' and family members' expectations. PATIENTS AND METHODS: We retrospectively…

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…

This study examined stress factors in families with a school-aged child with a disability. Path analyses revealed that children's demandingness and neediness for care was related more to maternal stress and that child's acceptability was related more…

When general ward registered nurses (RN) receive patients from an intensive care unit (ICU) they report that much of their time in the initial phases revolves around meeting family needs (Farvis, 2002). Families experience anxiety when leaving the…

OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using…

CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done,…

OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that…

BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial…

OBJECTIVE: To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. SETTING: A tertiary care, university-affiliated PICU in Boston. PARTICIPANTS:…

Drawing on several decades of work with families, pediatricians, other health care professionals, and policy makers, the American Academy of Pediatrics provides a definition of family-centered care. In pediatrics, family-centered care is based on the…

BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and…

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable…

A review of the literature provides the basis for a discussion of the impact of sibling death on healthy children whose emotional needs may be unattended both by parents and professionals. Factors which may deter hospice practitioners from delivering…

BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision…
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