Abstract
Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child’s best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child’s psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals’ moral reasoning may assist the process of shared decision-making.
Highlights
Children with life-limiting and life-threatening conditions have fluctuating disease stages, transitioning frequently between stable, unstable and deteriorating, prior to the dying stage[1]
Strategies present during shared decision-making were underpinned by moral work
Communication strategies in shared decision-making are underpinned by moral work
Summary
Children with life-limiting and life-threatening conditions have fluctuating disease stages, transitioning frequently between stable, unstable and deteriorating, prior to the dying stage[1]. The necessity of parents’ moral work in relation to their child’s medical care, defined as “attend[ing] to the issue of their appearance as moral persons, competent members and adequate performers...in formulating their accounts, they accomplish the status of moral adequacy”[4], P276, has been recognised. For decisions involving uncertainty, shared decision-making is promoted as the gold-standard in many countries[6]. A recent concept analysis defined paediatric shared decision-making as “active participation of parents, children and health professionals in reaching a compromise via collaborative partnership, with a common goal for child’s health”[7], P.482. Research has identified that decision factors, relational factors, perceived capability and willingness for engagement and time available for discussion, influence the implementation of shared decision-making within paediatrics[8]. Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, little is known about factors influencing these processes
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