TY - JOUR

T1 - Development of a complex palliative care intervention for patients with heart failure and their family carers: a theory of change approach

AU - Remawi, Bader Nael

AU - Preston, Nancy

AU - Gadoud, Amy

PY - 2025/5/6

Y1 - 2025/5/6

N2 - Background: 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 details on how key components interact to achieve an impact. Understanding how and why an intervention works enhances implementation. This study aimed to develop and refine a theory-based, complex palliative care intervention for patients with heart failure and their family carers. Methods: A preliminary theory that underlies the intervention and delineates its key components was co-designed, based upon a literature review, in three Theory of Change workshops with stakeholders from a hospital heart failure multidisciplinary team. The workshop discussions and analysis were informed by Normalisation Process Theory. Subsequently, analysis of secondary data on patient and carer experiences with palliative care services was presented to stakeholders to refine the proposed theory. Service users were consulted to provide feedback on the intervention components. Results: The agreed impact of the intervention was to meet the holistic palliative care needs of patients with heart failure and their families. Three long-term outcomes were identified: reduced unnecessary hospitalisations, symptom burden, and caregiving burden. Twelve preconditions on the patient, family, and healthcare professional levels and contextual assumptions were determined to achieve these outcomes. Proposed intervention activities include educating patients and heart failure teams on palliative care, completing a needs-assessment tool (NAT: PD-HF), addressing primary palliative care needs, sharing a summary of the tool with healthcare staff, and sharing experiences of using NAT: PD-HF in practice. Conclusions: 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 could work and identified the active ingredients necessary for replication. The developed Theory of Change serves as a model for researchers and policymakers to use in heart failure, but also as an example of how to develop interventions embedded in and co-produced from practice.

AB - Background: 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 details on how key components interact to achieve an impact. Understanding how and why an intervention works enhances implementation. This study aimed to develop and refine a theory-based, complex palliative care intervention for patients with heart failure and their family carers. Methods: A preliminary theory that underlies the intervention and delineates its key components was co-designed, based upon a literature review, in three Theory of Change workshops with stakeholders from a hospital heart failure multidisciplinary team. The workshop discussions and analysis were informed by Normalisation Process Theory. Subsequently, analysis of secondary data on patient and carer experiences with palliative care services was presented to stakeholders to refine the proposed theory. Service users were consulted to provide feedback on the intervention components. Results: The agreed impact of the intervention was to meet the holistic palliative care needs of patients with heart failure and their families. Three long-term outcomes were identified: reduced unnecessary hospitalisations, symptom burden, and caregiving burden. Twelve preconditions on the patient, family, and healthcare professional levels and contextual assumptions were determined to achieve these outcomes. Proposed intervention activities include educating patients and heart failure teams on palliative care, completing a needs-assessment tool (NAT: PD-HF), addressing primary palliative care needs, sharing a summary of the tool with healthcare staff, and sharing experiences of using NAT: PD-HF in practice. Conclusions: 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 could work and identified the active ingredients necessary for replication. The developed Theory of Change serves as a model for researchers and policymakers to use in heart failure, but also as an example of how to develop interventions embedded in and co-produced from practice.

KW - Palliative care

KW - Normalisation process theory

KW - Co-design

KW - Heart failure

KW - Theory of change

KW - Complex intervention

U2 - 10.1186/s12904-025-01776-5

DO - 10.1186/s12904-025-01776-5

M3 - Journal article

VL - 24

JO - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

IS - 1

M1 - 129

ER -