Abstract
Many adults diagnosed with a life-threatening condition have children living at home; they and their partners face the dual challenge of coping with the diagnosis while trying to maintain a parenting role. Parents are often uncertain about how, when, and what to tell their children about the condition, and are fearful of the effect on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Health-care professionals have a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. However, the practical and emotional challenges of communicating with families are compounded by a scarcity of evidence-based guidelines. This Review considers children's awareness and understanding of their parents' condition, the effect of communication around parental life-threatening condition on their wellbeing, factors that influence communication, and the challenges to achieving effective communication. Children's and parents' preferences about communication are outlined. An expert workshop was convened to generate principles for health-care professionals, intended as practical guidance in the current absence of empirically derived guidelines.
| Original language | English |
|---|---|
| Pages (from-to) | 1164-1176 |
| Number of pages | 13 |
| 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 CINHAL (January, 1982–May, 2016), Embase (Jan 1, 1974–May 11, 2016), MEDLINE (January, 1946–May, 2016), PsycINFO (January, 1967–April, 2016), Science Citation Index and Social Science Citation Index (January, 1945–May, 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, and we applied a search filter to identify systematic reviews of qualitative studies. Commentary, letters, conference abstracts, dissertations, and case reports were excluded ( appendix ). 5427 records were identified of which 2132 were duplicates. 2281 potentially relevant articles and reviews were reviewed by LH and LD. Our final sample consisted of 43 articles from the search and an additional 34 articles identified from references of relevant articles. Contributors AS conceptualised and designed the review. LD, LH, and AS undertook the literature searches and selected the studies. AS, LD, and ER gathered the information from the studies and drafted the manuscript. SZ, TR, AY, BK, and RB contributed to writing specific 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). UK M Bluebond-Langner (UCL Great Ormond Street Institute of Child Health, London). New Zealand C D'Souza (South Canterbury District Health Board). UK M Fazel, E Netsi (Department of Psychiatry, University of Oxford, Oxford). UK K F Stein (Department of Psychology, University of Bath, Bath). UK E Harrop (Oxford University Hospitals NHS Foundation Trust and Helen and Douglas House, 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). 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 are grateful to Duncan West and Melissa de Lusignan for facilitating the expert workshop, and to Valerie West, Mike Beckles, Nia Roberts, Hannah DeJong, Elise Sellars, and patient and public involvement from a parent with cancer (written permission obtained).
Keywords
- Adaptation, Psychological/physiology
- Adolescent
- Adult
- Awareness
- Child
- Child, Preschool
- Communication
- Decision Making
- Emotions
- Health Personnel/ethics
- Humans
- Parent-Child Relations
- Parents/psychology
- Patient Preference/psychology
- Terminally Ill/psychology