Parent’ and health professionals’ decision-making about medical care for children with life-limiting and life-threatening conditions : A qualitative constructivist case study

Polakova, Kristyna and Brearley, Sarah and Ahmed, Faraz (2025) Parent’ and health professionals’ decision-making about medical care for children with life-limiting and life-threatening conditions : A qualitative constructivist case study. PhD thesis, Lancaster University.

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Abstract

Background Parents and healthcare professionals caring for children with life-limiting and life-threatening conditions are required to make a continuous number of interconnected decisions about medical care during a child’s life continuum. Reaching decisional agreement through collaboration has been identified as good practice but is poorly implemented and understood. In the Czech Republic, little is known about decision-making in paediatric care. Aim To explore how parents and healthcare professionals make decisions about medical care for children with life-limiting and life-threatening conditions in the Czech Republic. Methods A qualitative multiple case study design, underpinned by constructivism was adopted. Each case was defined by a child and consisted of a parent and healthcare professional. Data were collected by interviews and documentary analysis within a single hospital setting in the Czech Republic. Narrative analysis guided the within-case and cross-case analysis. Findings The study comprised ten cases with 21 participants (n=10 parents, n=11 healthcare professionals). Six categories were identified; five categories of factors which influence medical decision-making (Information and Knowledge, Child, Parents, Family, and Environment), with a sixth category of the Decision-Making Approach (comprising, parent-guided, physician-driven, or shared). A conceptual model of medical decision-making was developed to depict the interrelationships between the categories. Discussion and Conclusion Decision-making for children with life-limiting and life-threatening conditions, takes place in a complex landscape, with the decision-makers individually influenced by multiple external, personal and relational factors. Shared decision-making is seen as desirable but is challenging to implement, due to power imbalances, communication challenges (exacerbated by time restrictions) and parental uncertainty about their role. Achieving shared decision-making requires respectful relationships, access to information, taking account of the factors which influence parents and their capacity to participate in decision-making, and achieving aligned perspectives on the child’s best interests, all of which are enabled by the involvement of paediatric palliative care teams.