Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

Talking about death and dying: Findings from deliberative discussion groups with members of the public.

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

BACKGROUND: Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail older people, those with non-malignant disease, and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. AIM: To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on health care, if any, from a patient perspective. DESIGN AND SETTING: A qualitative interview study undertaken with patients and family carers in a major UK city. METHOD: Semi-structured interviews were carried out with patients (and/or family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. RESULTS: Eleven participants were recruited: eight patients and three family carers. The following three interrelated themes were identified: 1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs; 2) a compassionate, timely approach is required for identification of palliative care needs, with or without an identification tool; and 3) identification of palliative care needs is beneficial where it leads to proactive holistic care. CONCLUSION: A compassionate approach, sharing of prognostic uncertainty, and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research.

BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.

Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a "jargon buster", an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation.

Protocol for VIVALDI social care: Pilot study to reduce infections, outbreaks and antimicrobial resistance in care homes for older adults.

Care home residents are vulnerable to severe outcomes from infections such as COVID-19 and influenza. However, measures to control outbreaks, such as care home closures to visitors and new admissions, have a detrimental impact on their quality of life. Many infections and outbreaks could be prevented but the first step is to measure them reliably. This is challenging in care homes due to the lack of data and research infrastructure. During the pandemic, the VIVALDI study measured COVID-19 infections in residents and staff by partnering with care providers and using routinely collected data. This study aims to establish sentinel surveillance and a research database to enable observational and future interventional studies in care homes. The project has been co-produced with care providers, staff, residents, relatives, and researchers. The study (October 2023 to March 2025) will explore the feasibility of establishing a network of 500-1500 care homes for older adults in England that is underpinned by a linked data platform. No data will be collected from staff. The cohort will be created by regularly extracting resident identifiers from Digital Social Care Records (DSCR), followed by pseudonymisation and linkage to routinely collected datasets. Following extensive consultation, we decided not to seek informed consent from residents for data collection, but they can 'opt out' of the study. Our goal is to be inclusive, and it is challenging to give every resident the opportunity to 'opt in' due to cognitive impairment and the requirement for consultees. The project, and all requests to use the data will be overseen by relatives, residents, staff, and care providers. The study has been approved by the Health Research Authority Confidentiality Advisory Group (23/CAG/0134&0135) and the South-West Frenchay Research Ethics Committee (23/SW/0105). It is funded by the UK Health Security Agency.

Infections like flu or COVID-19 are common in care homes and infected residents can become seriously unwell. When infections spread, the measures that are often used to stop outbreaks, like care home closures to visitors and new admissions, can have a detrimental impact on residents. The first step to solving this problem is being able to measure how often infections and outbreaks happen, and how this varies across care homes. This is currently difficult because there are no systems to collect data from care home residents. During the COVID-19 pandemic, care homes worked with researchers and Government to deliver a research study called VIVALDI which measured COVID-19 infections in residents and staff and monitored what happened to them. This pilot study builds on what we learned in the pandemic and aims to reduce the impact of common infections on residents. We will set up a network of 500-1500 care homes for older adults in England that are interested in research. By collecting limited data (NHS numbers) from residents in these homes and linking to other datasets already held in the secure NHS environment, we can measure the extent of infections in residents. We are not collecting data from staff, and any residents in the datasets cannot be identified. We will also create an anonymous database (names, dates of birth, NHS numbers removed), which researchers can use to find new ways to prevent infection in care homes. This will be stored securely by the research team. If the project is successful, and residents and relatives support it, we hope this approach can be used permanently to monitor infections in care homes. The study has been designed in partnership with care providers, experienced care staff, policymakers, academics, and residents and their relatives, who will also oversee the study and all research outputs.