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Insights From Parents of a Child With Leukaemia and Healthcare Professionals About Sharing Illness and Treatment Information: a Qualitative Research Study

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. 10.1016/j.ijnurstu.2018.04.008. Green open access

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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.

Type: Article
Title: Insights From Parents of a Child With Leukaemia and Healthcare Professionals About Sharing Illness and Treatment Information: a Qualitative Research Study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.ijnurstu.2018.04.008
Publisher version: https://doi.org/10.1016/j.ijnurstu.2018.04.008
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Cancer, Children and parents, Communication patterns, Communication intervention
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10058612
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