Browse Items (53 total)

OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study…

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 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)…

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…

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,…

PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND…

BACKGROUND: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care. PURPOSE: To assess evidence about interventions to improve palliative 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…

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

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…

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…

OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental…

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and…

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…

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…

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…

Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for…

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of…

The purpose of the current study was to document the course and 1-month post-bereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show…

The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences;…

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,…

BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some…

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…

BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the…

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,…

Providing care to a spouse or partner who is dying and then losing that person are among the most stressful of human experiences. A longitudinal study of the caregiving partners of men with AIDS showed that in addition to intense negative…

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…

Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV- bereaved caregiving partners were assessed…

Although personal resources of caregivers, such as coping skills and social support, have been shown to be important in understanding caregiver stress and health outcomes, personality traits have not previously been considered. The purpose of this…

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…

Spiritual phenomena were spontaneously reported in interviews of 68 of 125 recently bereaved HIV-positive and HIV-negative partners of men who died from AIDS. Spiritual schemas involving beliefs, experiences, rituals, social support, and roles were…
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