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Impact of a Pediatric Palliative Care Program on the Caregiver Experience (Journal of Hospice & Palliative Nursing)

December 1, 2015

Journal Article

Authors: Daphna Gans, PhD, Max W. Hadler, MPH, MA, Xiao Chen, PhD, Shang-Hua Wu, MS, Robert Dimand, Jill Abramson, Allison L. Diamant, MD, MSHS, Gerald F. Kominski, Ph.D.

Partners for Children, California’s pediatric palliative care program, uses family-centered care coordination to offer hospice-like therapeutic, respite and pain management services for children delivered concurrently with curative care and regardless of the child’s life expectancy. As an early implementer of concurrent care for children, the program provides evidence of the impact of concurrent care on children and their families. Program impact on caregivers' perceptions of their levels of stress and worry was measured using random effect growth curve models that included survey wave, caregivers’ perceived family support, and the child’s age and disease severity. All other data were descriptive and subject to univariate analysis. Worry and stress improved in the overall study population between the baseline and follow-up surveys.

Family support was predictive of reductions in stress and worry. Disease severity was predictive of stress. Family-centered care coordination is a promising tool to enhance care for children with life-threatening health conditions and reduce caregiver stress and worry. Program strategies, including individualized care planning, access to a 24/7 nurse line, and a focus on the entire family, can be a model for other states as the need for integration of pediatric palliative care for seriously ill children becomes a national public health priority.

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