Family perspectives on the quality of pediatric palliative care.

Title

Family perspectives on the quality of pediatric palliative care.

Creator

Contro N; Larson J; Scofield S; Sourkes B; Cohen H

Publisher

Archives Of Pediatrics & Adolescent Medicine

Date

2002

Subject

Longitudinal Studies

Description

BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif. METHODS: Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes. RESULTS: Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients. CONCLUSIONS: There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.
2002

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

14-9

Issue

1

Volume

156

Citation

Contro N; Larson J; Scofield S; Sourkes B; Cohen H, “Family perspectives on the quality of pediatric palliative care.,” Pediatric Palliative Care Library, accessed August 17, 2018, https://pedpalascnetlibrary.omeka.net/items/show/13119.

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