OBJECTIVE: To describe family perceptions of care at the end of life. METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making,…
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,…
Structural interviews were conducted with 66 children and their families to investigate how the experience of pain varied during cancer treatment. At diagnosis, 49% experienced cancer-related pain. Intense pain was more common at the beginning of…
In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling…
Grounded theory analysis was used to generate an explanation of the phenomenon of meaning reconstruction in the experience of 10 bereaved mothers. The theory that emerged included three phases in the process of meaning reconstruction: discontinuity,…
Children grieve differently than adults. Although the unit of care in hospice is the patient and family, emphasis is often on the grown members of the family and the anticipatory grief and bereavement needs of children and adolescents are sometimes…
Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey…
The aim of this paper is to present findings concerning a variety of factors expected to influence, either directly or indirectly as mediators, the psychological well-being of persons caring for a dementing relative in the community. The sample…
This study reports the effects of sibling death on 33 adolescents from white, middle- to upper-middle income families. Contact was made through mutual support groups for bereaved parents. A focused interview was used to gather data on bereavement…
This paper reviews some of the recent empirical studies validating the Circumplex Model and describes the newly developed self-report measure, FACES III. Studies testing hypotheses derived from the Circumplex Model regarding the three dimensions of…
Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family…
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of…
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…
BACKGROUND: Effective transition to adult services is required by an increasing number of children with ongoing needs. AIM: To identify practices that promote continuity at transition between child and adult services. METHODS: Systematic examination…
OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic…
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;…
This article compares the outcome and predictors of psychosocial distress of parents bereaved by young suicides, sudden infant death syndrome (SIDS), and child accidents. One objective is to explore whether suicide bereavement is more difficult for…
Family resistance to withdrawal of life support from children presents difficult issues of clinical practice and of principle. Legal recognition of unilateral physician authority for withdrawal on grounds of clinical "futility"-even in the most…
AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a…
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative…
Approximately 25% of children with cancer die of their disease. Early in the course of a patient's illness, it is often impossible to determine whether the disease will be cured with cancer-directed treatment. When potentially curative therapy is no…
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…
One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in…
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…
In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they…
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine…
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…
