Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.

TitleProblems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.
Publication TypeJournal Article
Year of Publication2015
AuthorsHill DL, Miller VA, Hexem KR, Carroll KW, Faerber JA, Kang T, Feudtner C
JournalHealth Expect
Volume18
Issue5
Pagination1052-65
Date Published2015 Oct
ISSN1369-7625
Abstract

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.

OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'.

METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians.

RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively).

CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.

DOI10.1111/hex.12078
Alternate JournalHealth Expect
PubMed ID23683168
PubMed Central IDPMC3796017
Grant ListR21 NR010026 / NR / NINR NIH HHS / United States