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Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry ("the…
A sample of 167 parents of children with a mental illness or physical disability participated in the study. Parents reported receiving gratification from fulfilling their parental duties and from learning about themselves. The child’s and…
Eighty-seven parents of children with Down Syndrome (DS; 63 women, 24 men) wrote narratives about finding out that their child had DS and completed questionnaire measures of subjective well-being (SWB) and stress-related growth and completed the…
The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma,…
OBJECTIVES: To determine whether intravenous bisphosphonate treatment is helpful for children with osteoporosis pseudoglioma syndrome who have severe osteoporosis. METHODS: Three children (ages 9 to 11 years) with osteoporosis pseudoglioma syndrome…
