Parents’ Experience of Advance Care Planning: A Grounded Theory of Re-constructing Meaning Through Advance Care Planning.

Abstract

Children with life-limiting and life-threatening conditions are living longer due to medical advances and increasing options for health care intervention. This makes discussions about choices of care more complicated and engagement in the process of advance care planning ever more complex. A scoping review revealed that current understanding of parents’ experience of advance care planning is limited.
Through a constructivist grounded theory approach this study aimed to deepen our understanding of the contextual and relational complexities of advance care planning for parents of children with life-limiting or life-threatening conditions. Methods combined open ended, semi-structured interviews and examination of advance care plans. Thirteen parents were interviewed, nine who were parents of children receiving palliative care and four parents of children who had died. Transcripts of digitally recorded interviews and nine advance care plans were analysed through a constant comparative approach.
The study identified three conceptual components of realisation, reconciling multiple tensions and building confidence and asserting control, which revealed the experience of re-constructing meaning for parents as they engaged in the process of advance care planning. Re-constructing meaning through advance care planning enabled parents to re-adjust their thoughts, beliefs and expectations in response to ongoing changes in their child’s condition and a life anticipated without their child.
The study has generated deeper understanding of parents’ experience of advance care planning and that advance care planning conversations are essential in supporting parents to live with uncertainty and the growing possibility of their child’s death. The study challenges health care professionals to reframe their approach to advance care planning; from being a record of decisions about do-not-resuscitate and treatment options, to a continuous, relational conversation about choices of care that enables parents to re-construct meaning. By fostering an approach that recognises the re-adjustments made to their values and beliefs, health care professionals can improve the experience for parents and help them to reflect on and manage the complexity and contradictions embedded within the advance care planning process for their child.

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ORCID for Alison Richardson: orcid.org/0000-0003-3127-5755

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