Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information : A qualitative research study

Journal article


Gibson, Faith, Kumpunen, Stephanie, Bryan, Gemma and Forbat, Liz. (2018). Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information : A qualitative research study. International Journal of Nursing Studies. 83, pp. 91-102. https://doi.org/10.1016/j.ijnurstu.2018.04.008
AuthorsGibson, Faith, Kumpunen, Stephanie, Bryan, Gemma and Forbat, Liz
Abstract

Background
Many parents report a strong desire to take on information-giving roles, and believe they are best positioned to discuss their child’s illness with their child. Healthcare professionals have a supporting role to reduce the burden on parents who feel responsible for conveying information to their child and other family members.

Objective
To examine parents’ and healthcare professionals’ perceptions of roles in receiving and communicating information when a child is diagnosed with and treated for acute lymphoblastic leukaemia.

Design, setting and participants
We used the principles of a grounded theory approach. This was a single site study, recruiting from a principal children’s cancer treatment centre in the United Kingdom. The sample included parents of children receiving and completed treatment for acute lymphoblastic leukaemia (n = 28), and healthcare professionals (n = 34).

Methods
Methods included individual interviews, face-to-face and telephone, focus groups, and an online forum.

Findings
Communication ‘touch points’ are many over the course of a child’s cancer journey. We describe often ‘mismatched’ communication encounters where those seeking information and those providing information have different goals. Healthcare professionals in the encounter have expertise at the outset while parents have less expertise, but this expertise grows over time and this can increase the perceptions of this ‘mismatch’ and create different challenges.

Conclusions
Considered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential.

Keywordscancer; children and parents; communication patterns; communication intervention
Year2018
JournalInternational Journal of Nursing Studies
Journal citation83, pp. 91-102
PublisherElsevier Ltd
ISSN0020-7489
Digital Object Identifier (DOI)https://doi.org/10.1016/j.ijnurstu.2018.04.008
Scopus EID2-s2.0-85046162561
Open accessPublished as green open access
Page range91-102
FunderDimbleby Cancer Care
Author's accepted manuscript
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Open
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online13 Apr 2018
Publication process dates
Accepted12 Apr 2018
Deposited11 May 2021
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