Parent experience of advance care planning: reconstructing meaning – grounded theory

Abstract

ObjectivesParents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective was to understand parents’ experience of advance care planning for their child.MethodsData collected through semistructured interviews and documents using a constructivist and situational grounded theory approach. Parents with experience of end-of-life decisions or advance care planning for a child (age 0–17 years) with a life-limiting condition or life-threatening condition.Results13 parents participated; 11 interviews were undertaken with analysis of 9 advance care plans. Parents were interviewed separately (n=9) or together (n=2).Overarching and inter-related categories, realisation, reconciling multiple tensions and building confidence and asserting control explained the actions and processes of parents’ experience of advance care planning. The arising theory, reconstructing meaning through advance care planning, describes how the process of advance care planning, enables parents to make ‘good’ decisions in complex medical situations and despite the emotional distress, has therapeutic value.ConclusionThis study confirms parents want to engage in advance care planning, use the process to continuously reorientate their values alongside treatment decisions and that offers a therapeutic value not previously recognised. This requires healthcare professionals to reframe their approach to advance care planning conversations valuing parents’ voices and desire for a sense of control and empowering them to make future decisions that offer hope and build resilience to face the future death of their child.