Browse Items · Pediatric Palliative Care Library

Sources of stress for family caregivers of institutionalized dementia patients

Although many caregivers place their relative in a nursing home in an attempt to reduce their own burden, caregiving stress often continues after institutionalization. This research examined sources of stress for 66 caregivers who cared for their…

Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families

OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the…

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the…

The multiple meanings of long-term gastrostomy in children with severe disability

Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents…

Improving estimates of caregiver time cost and family impact associated with birth defects

BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…

Tags: 2001, Abnormalities/epidemiology/psychology, Backlog, Caregivers/psychology, Cost Of Illness, Family Health, Hobbs CA, Humans, ICU Decision Making, Journal Article, Models, Parents, Quality-Adjusted Life Years, Robbins JM, Social Support, statistical, Teratology, Tilford JM, Time Factors

Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition

OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with…

Final transitions: family caregiving at the end of life

BACKGROUND: This study aimed to understand how caregivers make the transition to end-stage caregiving and to illuminate its unique aspects using a stress process model. METHODS: Qualitative in-depth interviews were conducted with 74 caregivers of a…

A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect

Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused…

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