TY - JOUR

T1 - The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services

T2 - a secondary reflexive thematic analysis of longitudinal interview data

AU - Remawi, Bader Nael

AU - Gadoud, Amy

AU - Preston, Nancy

PY - 2023/8/10

Y1 - 2023/8/10

N2 - Background: Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services. Methods: A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using ‘reflexive thematic’ analysis. Results were explored through the lens of Normalisation Process Theory. Results: Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory. Conclusions: The study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.

AB - Background: Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services. Methods: A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using ‘reflexive thematic’ analysis. Results were explored through the lens of Normalisation Process Theory. Results: Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory. Conclusions: The study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.

KW - Secondary data analysis

KW - Palliative care

KW - Needs assessment

KW - Normalisation process theory

KW - Heart failure

KW - Qualitative research

KW - Reflexive thematic analysis

U2 - 10.1186/s12904-023-01241-1

DO - 10.1186/s12904-023-01241-1

M3 - Journal article

VL - 22

JO - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

IS - 1

M1 - 115

ER -