Development of a theory-based, complex palliative care intervention for patients with heart failure and their family carers

Remawi, Bader and Gadoud, Amy and Preston, Nancy (2022) Development of a theory-based, complex palliative care intervention for patients with heart failure and their family carers. PhD thesis, Lancaster University.

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Abstract

Introduction: Patients with heart failure have significant palliative care needs but few receive palliative care. Guidance is lacking on how to integrate palliative care into standard heart failure care. Palliative care interventions often lack an underpinning theory and understanding of their key components and how they interact to achieve an impact. Understanding how and why an intervention works enhances implementation. Aim: Develop and refine a theory-based, complex palliative care intervention for patients with heart failure and their family carers. Methods: Intervention development using the Medical Research Council framework for developing complex interventions and Theory of Change approach. A systematic review of palliative care needs-assessment and measurement tools in heart failure was conducted. Next, a preliminary intervention and underpinning theory that explains its causal mechanism were co-designed in Theory of Change workshops with stakeholders from a hospital heart failure multidisciplinary team. Subsequently, patient, family carer, and professional caregiver interviews on integrated palliative care were analysed. Findings from the analysis were discussed with stakeholders to refine the intervention and underlying theory and co-develop a feasibility study protocol. Results: NAT:PD-HF was identified as the most appropriate palliative care needs-assessment tool in the review and after discussion with stakeholders. At the Theory of Change workshops, the agreed intervention impact was to meet the holistic palliative care needs of patients and families. Three long-term outcomes were identified: reduced unnecessary hospitalisations, symptom burden, and caregiving burden. To achieve these outcomes, many preconditions, contextual conditions, and intervention activities (education, collaboration, and completing NAT:PD-HF) must exist. Conclusion: The study provided novel insights into complex intervention development and the potential mechanism of integrating palliative care in heart failure. It outlined how the complex intervention works and identified the active ingredients necessary for replication. The developed Theory of Change serves as a model for researchers and policymakers to use. A feasibility study protocol was developed.