Logo
Search for

Volume 20, Issue 5, Pages 335-346 (October 2005)


View previous. 8 of 16 View next.

Continuity of Care and Caring: What Matters to Parents of Children with Life-Threatening Conditions

Karen S. Heller, PhD, Mildred Z. Solomon, EdDCorresponding Author Information, for the Initiative for Pediatric Palliative Care (IPPC) Investigator Team

This article presents parents' perceptions regarding continuity and coordination of care of children with life-threatening conditions as revealed through qualitative analysis of interviews with 36 bereaved parents of children who died after receiving care at three geographically dispersed teaching hospitals in the United States. Parental concerns about and experience of continuity of care were framed primarily in terms of the quality and continuity of relationships with healthcare providers throughout a child's illness and death and the continuity and consistency of information that they received about their child's condition and care. Continuity in relationships was perceived as key in ensuring that clinicians knew and cared about the child and parents, which in turn contributed to parents' confidence that their child would receive the best possible care. In the absence of continuous, caring relationships with staff, parents reported frustration, hypervigilance, and mistrust about the quality of care that their child received.

Education Development Center, Inc., Newton, MA and Harvard Medical School, Boston, MA. Senior Research Associate (former), Education Development Center, Inc. (Heller) and Vice President, Education Development Center, Inc. and Associate Clinical Professor of Social Medicine, Center for Applied Ethics and Professional Practice and Vice President, Education Development Center, Inc., Newton, MA, and Associate Clinical Professor of Social Medicine, Medical Ethics, and Anaesthesia, Harvard Medical School, Boston, MA (Solomon)

Corresponding Author InformationAddress correspondence and reprint requests to Mildred Z. Solomon, EdD, Education Development Center, Inc., 55 Chapel St., Newton, MA 02458.

PII: S0882-5963(05)00048-5

doi:10.1016/j.pedn.2005.03.005


View previous. 8 of 16 View next.