Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Ekberg S; Yates P; Bradford Natalie K; Herbert A; Danby S

Journal of Palliative Medicine

2018

Human; Child; Adult; Emotions; Professional-Patient Relations; Collaboration; Siblings; PubMed; Qualitative Studies; Embase; CINAHL Database; Thematic Analysis; Medline; Palliative Care -- In Infancy and Childhood; Systematic Review; Honesty; Life Expectancy -- In Infancy and Childhood; Patient Attitudes; Psycinfo

Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. Objective: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. Design: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. Data Sources: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. Results: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n?=?914], patients [n?=?25], and siblings [n?=?40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. Conclusions: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.

December 2018 List