CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…
OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of…
According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study…
The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes…
This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…
