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Keywords

children, end of life, palliative care, parents, Supportive Care Model

 

Authors

  1. Widger, Kimberley RN, MN, CHPCN(C)
  2. Steele, Rose RN, PhD
  3. Oberle, Kathleen RN, PhD
  4. Davies, Betty RN, PhD, CT, FAAN

Abstract

The fit between the Supportive Care Model and existing research on parent perspectives about pediatric palliative care was explored following a review of the literature. An electronic search of Medline and CINAHL from 2004 to January 2009 resulted in 49 articles on 38 studies that sought parent perspectives on care provided by health professionals during palliation, end of life, and/or bereavement. Results were synthesized according to the dimensions of the Supportive Care Model. The model fit well with the research, indicating that the highest quality pediatric palliative care occurred when there was a fundamental valuing of the child and family, when individual human connections were made and continued throughout and following illness and death, when families felt empowered, when some aspects of care were performed for families, when families were supported in their search for meaning in their situation, and when the integrity of each individual and the family as a whole was preserved. The research also suggests that careful assessment of individual family preferences within each dimension is crucial. The model is proposed as a helpful guide for clinical practice with dying children and their families.