Open AccessProblems and hopes perceived by mothers, fathers and physicians of children receiving palliative care
Author(s) -
Hill Douglas L.,
Miller Victoria A.,
Hexem Kari R.,
Carroll Karen W.,
Faerber Jennifer A.,
Kang Tammy,
Feudtner Chris
Publication year - 2015
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12078
Subject(s) - palliative care , nursing , psychology , medline , family medicine , medicine , political science , law
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.