‘It can be difficult to find the right words’: Parents’ needs when breaking news and communicating to children with cancer and their siblings

References

• National Cancer Registry Ireland. 2017. Cancer Trends No 32. Childhood Cancer PDF. https://www.ncri.ie/sites/ncri/files/pubs/Childhood%20Cancer%20Trends%20Report%20February%202017%20Final.pdf. Accessed December 2019.
   Google Scholar
• Canadian Medical Association. Death in childhood. Canadian Medical Association Journal (CMAJ). 1968;98(20):967–969.
   PubMed Web of Science ®Google Scholar
• Sisk BA, Bluebond-Langner M, Wiener L, Mack J, Wolfe J. Prognostic disclosures to children: A historical perspective. Pediatrics 2016;138(3):e20161278–e20161278. doi:10.1542/peds.2016-1278
   PubMed Web of Science ®Google Scholar
• Coyne I, Amory A, Gibson F, Kiernan G. Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. Eur J Cancer Care (Engl). 2016;25(1):141–156. doi:10.1111/ecc.12411
   PubMed Web of Science ®Google Scholar
• Badarau DO, Wangmo T, Ruhe KM, et al. Parents' challenges and physicians' tasks in disclosing cancer to children. A qualitative interview study and reflections on professional duties in pediatric oncology. Pediatr Blood Cancer. 2015;62(12):2177–2182. doi:10.1002/pbc.25680
   PubMed Web of Science ®Google Scholar
• Gibson F, Aldiss S, Horstman M, Kumpunen S, Richardson A. Children and young people's experiences of cancer care: a qualitative research study using participatory methods. Int J Nurs Stud. 2010;47(11):1397–1407. doi:10.1016/j.ijnurstu.2010.03.019
   PubMed Web of Science ®Google Scholar
• Young B, Dixon-Woods M, Windridge KC, Heney D. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ. 2003;326(7384):305. doi:10.1136/bmj.326.7384.305
   PubMed Web of Science ®Google Scholar
• Brand SR, Fasciano K, Mack JW. Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer. 2017;25(3):769–774. doi:10.1007/s00520-016-3458-x
   PubMed Web of Science ®Google Scholar
• Gibson F, Kumpunen S, Bryan G, Forbat L. Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study. Int J Nurs Stud. 2018;83:91–102. doi:10.1016/j.ijnurstu.2018.04.008
   PubMed Web of Science ®Google Scholar
• Coughlan D, Brannick T. 2005. Doing Action Research in Your Own Organisation. 2nd ed. London/California/New Delhi: Sage Publicatons. Retrieved from http://213.55.83.214:8181/Education/27492.pdf
   Google Scholar
• Hynes G, Coghlan D, McCarron M. Participation as a multi-voiced process: Action research in the acute hospital environment. Action Res. 2012;10(3):293–312. doi:10.1177/1476750312451278
   Web of Science ®Google Scholar
• Wiener L, Kazak AE, Noll RB, Farkas Patenaude A, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatr Blood Cancer. 2015;62(S5):S419–S424. doi:10.1002/pbc.25675
   PubMedGoogle Scholar
• Bluebond-Langner M, Hargrave D, Henderson EM, Langner R. 'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses. Arch Dis Child. 2017;102(5):468–471. doi:10.1136/archdischild-2015-310345
   PubMed Web of Science ®Google Scholar
• Steele AC, Kaal J, Thompson AL, et al. Bereaved parents and siblings offer advice to healthcare providers and researchers. J Pediatr Hematology/Oncology. 2013;35(4):253–259.
   PubMed Web of Science ®Google Scholar
• Lövgren M, Bylund-Grenklo T, Jalmsell L, Wallin AE, Kreicbergs U. Bereaved siblings' advice to health care professionals working with children with cancer and their families. J Pediatr Oncol Nurs. 2016;33(4):297–305. doi:10.1177/1043454215616605
   PubMed Web of Science ®Google Scholar
• Feraco AM, Brand SR, Mack JW, Kesselheim JC, Block SD, Wolfe J. Communication skills training in pediatric oncology: Moving beyond role modeling. Pediatr Blood Cancer. 2016;63(6):966–972. doi:10.1002/pbc.25918
   PubMed Web of Science ®Google Scholar
• Sisk BA, Mack JW. How should we enhance the process and purpose of prognostic communication in oncology. AMA J Ethics. 2018;20(8):757–765.
   PubMedGoogle Scholar
• Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. [Database] doi:10.1177/1049732305276687
   PubMed Web of Science ®Google Scholar