Abstract
When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. Evidence-based guidelines are urgently needed for all health-care settings, from tertiary referral centres in high-income countries to resource limited environments in low-income and middle-income countries, where rates of child mortality are high. We place this Review in the context of children's developing understanding of illness and death. We review the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families, and health-care professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.
| Original language | English |
|---|---|
| Pages (from-to) | 1150-1163 |
| Number of pages | 14 |
| Journal | The Lancet |
| Volume | 393 |
| Issue number | 10176 |
| Early online date | 14 Mar 2019 |
| DOIs | |
| Publication status | Published - 16 Mar 2019 |
Bibliographical note
Copyright © 2019 Elsevier Ltd. All rights reserved.Funding
Data for this Review were identified using CINAHL (January, 1982–May, 2016), Embase (Jan 1, 1974–May 11, 2016), MEDLINE (January, 1946–May, 2016), PsycINFO (January, 1967–April, 2016), and Science Citation Index and Social Science Citation Index (1945–2016). We used a combination of keywords in title or abstract and subject headings for the following key concepts: children, communication, and life-threatening illness. We applied a search filter to identify systematic reviews of qualitative studies. Commentary, letters, conference abstracts, dissertations and case reports were excluded. See appendix for search strategy. 5427 records were identified of which 2132 were duplicates. 2281 potentially relevant articles and reviews were reviewed by LH, KFS and LD. Our final sample consisted of 57 articles from the search and 44 articles identified from references of relevant articles. Contributors AS conceptualised and designed the Review. LD, LH, KFS, and AS undertook the literature searches and selected the studies. AS, LD and ER gathered the information from the studies and drafted the manuscript. MB-L, SZ, EH, RB, BK, TR, and KFS provided specific input to different sections of the manuscript; the Communication Expert Group commented on drafts of the manuscript and contributed to the development of the guidelines. LD and ER compiled the tables. All authors have read and approved the final version of the Review. Communication Expert Group USA T Betancourt (Boston College, Boston, MA). New Zealand C D'Souza (South Canterbury District Health Board). UK M Fazel, E Netsi (University of Oxford, Oxford). UK D Hochhauser (UCL Cancer Institute, London). USA B Kolucki (Communication and Children in Difficult Circumstances UNICEF Consultant, New York, NY). UK A C Lowney (Oxford University Hospitals NHS Foundation Trust and Sir Michael Sobell House, Oxford). South Africa L Richter (University of the Witwatersrand, Johannesburg). USA A Yousafzai (Harvard T H Chan School of Public Health, Boston, MA). Declaration of interests EH declares she is deputy chair of the NICE clinical guideline development committee for NG61 (End of Life Care in Infants, Children and Young People). All of the other authors declare no competing interests. Acknowledgments The study was funded by The John Fell Fund, University of Oxford and The Sheila Kitzinger Programme, Green Templeton College, Oxford supported the workshop. We thank Duncan West and Melissa de Lusignan for facilitating the expert workshop, and Valerie West, Mike Beckles, Nia Roberts, Hannah DeJong, Elise Sellars, and the patient and public involvement from Meriel Flint, who had cancer as an adolescent, and a young adult with a life-threatening condition (written permission obtained).
Keywords
- Adolescent
- Child
- Child, Preschool
- Communication
- Culturally Competent Care/standards
- Decision Making
- Disease Progression
- Evidence-Based Practice/methods
- Health Personnel/ethics
- Humans
- Parents/education
- Terminally Ill/psychology
- Treatment Adherence and Compliance
