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dc.contributor.authorGibson, Faithen_UK
dc.contributor.authorKumpunen, Stephanieen_UK
dc.contributor.authorBryan, Gemmaen_UK
dc.contributor.authorForbat, Lizen_UK
dc.description.abstractBackground 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.en_UK
dc.publisherElsevier BVen_UK
dc.relationGibson 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.
dc.rightsThis 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: © 2018, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International
dc.subjectChildren and parentsen_UK
dc.subjectCommunication patternsen_UK
dc.subjectCommunication interventionen_UK
dc.titleInsights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research studyen_UK
dc.typeJournal Articleen_UK
dc.rights.embargoreason[IJNS_Communication study_final version.pdf] Publisher requires embargo of 12 months after formal publication.en_UK
dc.citation.jtitleInternational Journal of Nursing Studiesen_UK
dc.type.statusAM - Accepted Manuscripten_UK
dc.contributor.funderDimbleby Cancer Careen_UK
dc.contributor.affiliationUniversity of Surreyen_UK
dc.contributor.affiliationThe Nuffield Foundationen_UK
dc.contributor.affiliationGreat Ormond Street Hospital for Sick Childrenen_UK
dc.contributor.affiliationAustralian Catholic Universityen_UK
dc.subject.tagCancer Care: Children and Familiesen_UK
dc.subject.tagQualitative Research Methodsen_UK
Appears in Collections:Faculty of Social Sciences Journal Articles

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