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

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

Palliative care needs-assessment and measurement tools used in patients with heart failure:a systematic mixed-studies review with narrative synthesis

Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.4

The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services:a secondary reflexive thematic analysis of longitudinal interview data

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

Taiwanese family members’ bereavement experience following an expected death : a systematic review and narrative synthesis

Background: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. Methods: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker’s appraisal tool. A narrative synthesis approach using Popay’s work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members’ bereavement experiences were included. We excluded papers studying bereavement through the death of a child. Results: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. Conclusion: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research

Additional file 1 of Taiwanese family members’ bereavement experience following an expected death: a systematic review and narrative synthesis

Supplementary Material 1: Search term

Palliative and end-of-life care in intensive care units in low- and middle-income countries:A systematically constructed scoping review

Purpose Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries Materials and methods Scoping review with nine databases systematically searched for literature published in English on palliative care in intensive care units in low- and middle- income settings (01/01/1990 to 31/05/2021). Two reviewers independently checked search results and extracted textual data, which were analyzed and represented as themes. Results Thirty papers reported 19 empirical studies, two clinical case reports and six discussion papers. Papers originated from Asia and Africa, primarily using observational designs and qualitative approaches, with no trials or other robust evaluative or comparative studies. No studies directly sought data from patients or families. Five areas of research focus were identified: withholding and withdrawing treatment; professional knowledge and skills; patient and family views; culture and context; and costs of care. Conclusions Palliative care in intensive care units in low-and middle-income countries is understudied. Research focused on the specific needs of intensive care in low- and middle-income countries is required to ensure optimal patient outcomes

Improving paramedic responses for patients dying at home:a theory of change-based approach

Background: Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model. Theory of Change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic EoLC for patients in the community. Methods: A Theory of Change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Nine stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops, ranging between 60 and 90 min. Each workshop had 2–3 facilitators. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a Theory of Change model was created, with the components shared with stakeholders. Results: The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective EoLC. Four potential long-term outcomes were suggested: (1) increased use of anticipatory and regular end-of-life medications; (2) reduced end-of-life clinical and medication errors; (3) reduced unnecessary hospitalisations; (4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. Conclusions: A Theory of Change approach was effective at identifying impact, outcomes, and the important features of an end-of-life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support EoLC, which the workshop stakeholders are now seeking to develop as an intervention

Stakeholder Engagement as a Strategy to Enhance Palliative Care Involvement in Intensive Care Units:A Theory of Change Approach

Background Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach. Methods Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map. Results The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions. Conclusion Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs