Browse Items (24 total)

BACKGROUND: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not…

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

Caring for children who have a chronic life-limiting illness can be emotionally and physically challenging. Just as families may struggle with whether they are making the right decisions, care providers struggle with whether they are giving the right…

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)…

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill…

Drawing from concepts from family stress theory, resilience theory, Rolland's model of family adaptation to disability, and Antonovsky's salutogenetic model, this study explores the relationship between family sense of coherence and measures of…

BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or…

OBJECTIVES: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes. METHOD: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and…

OBJECTIVE: To examine the economic and psychologic costs of care provided by maternal caregivers to children with gastrostomy tube (GT) feedings. STUDY DESIGN: We conducted a 3-site study of primary maternal caregivers of 101 chronically ill…

PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a…

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,…

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…

Caring for a child with cancer is a demanding experience for both parents, yet most research focuses on mothers. In this paper, we present the findings of a secondary analysis of data from a study in which the care-giving experience of fathers is…

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,…

OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were…

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…

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a)…
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