Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families.

Abstract

Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families. Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care--from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique. Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making. The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.