Popejoy, Emma
(2018)
Decision making and future planning for children with life-limiting conditions: a longitudinal case study.
PhD thesis, University of Nottingham.
Abstract
Background
The number of children with life-limiting conditions in England is increasing. Families and professionals caring for such children face difficult care and treatment decisions. However, little is known about the factors which influence such decision making and the processes through which decisions are made.
Aim
To explore the process of decision making and future planning for children with life-limiting conditions.
Methods
This study employed a longitudinal, qualitative case study approach, involving eleven cases. Cases were centred around a child and their family, and additional interview participants, including healthcare professionals and extended family members, were nominated by the family to participate in interviews. Data sources included 46 interviews, 72 observations and review of medical notes. Data were analysed using narrative analysis.
Findings
Key findings pertained to the importance of relationships and communication, the nature of decision making and strategies used within the process, and the role of best interests’ discussions during disagreements. Good relationships and communication were essential in decision making, as the process often involved multiple stakeholders. Poor inter-professional communication however was common and presented challenges for decision making. Analysis demonstrated that individuals recognise little practical or emotional difference between decision making and future planning, suggesting that they conceptualise both, simply as decision making. Within the process of decision making, numerous strategies were identified which aimed to achieve agreement between stakeholders. These were information framing, persuasion, appeals to evidence and justification. During protracted disagreements, occasionally reference to the child’s ‘best interests’ was made and occurred when professionals were concerned about harm to the child. Consequently the possible limits to parental decisional involvement through application to the courts, was highlighted, yet never actually implemented. Predominantly collaboration, which was indicative of shared decision making, was observed and reported.
Conclusion
This study revealed the complex and nuanced nature of decision making. This research has highlighted the necessity of good quality relationships between families and professionals, and also communication in the inter-professional relationship. For those involved in decision making for children with life-limiting conditions, an understanding of each individual’s holistic wishes and values, alongside their perception of decisional risks to the child are important considerations, particularly during sustained disagreements. This study suggests that despite the policy drive towards shared decision making and the widespread perception that parents are the ultimate decision makers for their children, these assumptions are bounded. It calls for a professional awareness of the moral work undertaken by families in decision making, in order to further promote collaboration and prevent sustained disagreement.
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