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'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.

Bluebond-Langner, M; Hargrave, D; Henderson, EM; Langner, R; (2016) '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. Archives of Disease in Childhood 10.1136/archdischild-2015-310345. (In press). Green open access

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Abstract

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.

Type: Article
Title: '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.
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/archdischild-2015-310345
Publisher version: http://dx.doi.org/10.1136/archdischild-2015-310345
Language: English
Additional information: This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Keywords: Communication, Cystic Fibrosis, Decision-making, Oncology, Qualitative research
UCL classification: UCL
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 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 > Developmental Biology and Cancer Dept
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/1531696
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