Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/27303
Appears in Collections:Faculty of Social Sciences Journal Articles
Peer Review Status: Refereed
Title: Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study
Author(s): Gibson, Faith
Kumpunen, Stephanie
Bryan, Gemma
Forbat, Liz
Contact Email: elizabeth.forbat1@stir.ac.uk
Keywords: Cancer
Children and parents
Communication patterns
Communication intervention
Issue Date: 31-Jul-2018
Citation: Gibson F, Kumpunen S, Bryan G & Forbat L (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
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.
DOI Link: 10.1016/j.ijnurstu.2018.04.008
Rights: This item has been embargoed for a period. During the embargo please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study. Accepted refereed manuscript of: Gibson F, Kumpunen S, Bryan G & Forbat L (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. DOI: https://doi.org/10.1016/j.ijnurstu.2018.04.008. © 2018, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International http://creativecommons.org/licenses/by-nc-nd/4.0/

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