Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: A qualitative systematic review

Background Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognised as a critical component of high-quality paediatric palliative care. Objective To synthesise 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 synthesised 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 eleven 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