Introduction: Person-centred care has become internationally recognised as a critical attribute of high-quality healthcare. However, the concept has been criticised for being poorly theorised and operationalised. Serious illness is especially aligned with the need for person-centredness, usually necessitating involvement of significant others, management of clinical uncertainty, high-quality communication and joint decision-making to deliver care concordant with patient preferences. This review aimed to identify and appraise the empirical evidence underpinning conceptualisations of ‘person-centredness’ for serious illness. Methods: Search strategy conducted in May 2020. Databases: CINAHL, Embase, PubMed, Ovid Global Health, MEDLINE and PsycINFO. Free text search terms related to (1) person-centredness, (2) serious illness and (3) concept/practice. Tabulation, textual description and narrative synthesis were performed, and quality appraisal conducted using QualSyst tools. Santana et al’s person-centred care model (2018) was used to structure analysis. Results: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow data: n=12,446 studies screened by title/abstract, n=144 full articles assessed for eligibility, n=18 studies retained. All studies (n=18) are from high-income countries, and are largely of high quality (median score 0.82). The findings suggest that person-centred care encompasses the patient and family being respected, given complete information, involved in decision-making and supported in their physical, psychological, social and existential needs. The studies highlight the importance of involving and supporting family/friends, promoting continuation of normality and self-identity, and structuring service organisation to enable care continuity. Conclusion: Person-centred healthcare must value the social network of patients, promote quality of life and reform structurally to improve patients’ experience interacting with the healthcare system. Staff must be supported to flexibly adapt skills, communication, routines or environments for individual patients. There remains a need for primary data investigating the meaning and practice of PCC in a greater diversity of diagnostic groups and settings, and a need to ground potential components of PCC within broader universal values and ethical theory.

Background: Person-centred care (PCC) is being internationally recognised as a critical attribute of high-quality healthcare. The International Alliance of Patients Organisations defines PCC as care that is focused and organised around people, rather than disease. Focusing on delivery, we aimed to review and evaluate the evidence from interventions that aimed to deliver PCC for people with serious physical illness and identify models of PCC interventions. Methods: Systematic review of literature using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched AMED, CINAHL, Cochrane Library, Embase, Medline, PsycINFO, using the following key concepts: patient/person-centred care, family centred care, family based care, individualised care, holistic care, serious illness, chronic illness, long-term conditions from inception to April 2022. Due to heterogeneity of interventions and populations studied, narrative synthesis was conducted. Study quality was appraised using the Joanna Briggs checklist. Results: We screened n=6156 papers. Seventy-two papers (reporting n=55 different studies) were retained in the review. Most of these studies (n=47) were randomised controlled trials. Our search yielded two main types of interventions: (1) studies with self-management components and (2) technology-based interventions. We synthesised findings across these two models: Self-management component : the interventions consisted of training of patients and/or caregivers or staff. Some studies reported that interventions had effect in reduction hospital admissions, improving quality of life and reducing costs of care. Technology-based interventions : consisted of mobile phone, mobile app, tablet/computer and video. Although some interventions showed improvements for self-efficacy, hospitalisations and length of stay, quality of life did not improve across most studies. Discussion: PCC interventions using self-management have some effects in reducing costs of care and improving quality of life. Technology-based interventions improves self-efficacy but has no effect on quality of life. However, very few studies used self-management and technology approaches. Further work is needed to identify how self-management and technology approaches can be used to manage serious illness. PROSPERO registration number: CRD42018108302.

Introduction: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. Methods: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et al’s PCC model (2018) and Giusti et al’s systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. Results: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. Conclusion: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce.

Objectives: To achieve universal health coverage, health systems need to be strengthened to support the consistent delivery of high-quality, evidence-informed care at scale. The aim of the National Institute for Health Research (NIHR) Global Research Unit on He A lth S ystem S tr E ng T hening in Sub-Saharan Africa (ASSET) is to address this need in a four-year programme spanning three healthcare platforms (primary health care for the integrated treatment of chronic conditions in adults, maternal and newborn, surgical care) involving eight work packages. This paper describes the pre-implementation phase research protocols that assess: (1) barriers to accessing care; (2) health system bottlenecks in care process and pathways; (3) quality of care, and; (4) people centredness. Findings from this research are used to engage stakeholders and to inform the selection of a set of health system strengthening interventions (HSSIs) and subsequent methodology for evaluation. Settings: Publicly funded health systems in rural and urban areas in Ethiopia, Sierra Leone, South Africa, and Zimbabwe. Population: Stakeholders including patients and their caregivers, community representatives, clinicians, managers, administrators, and policymakers. Study methodologies and delivery: In each work package, we apply a mixed-methods approach, including: literature reviews; situation analyses; cohort studies; cross-sectional surveys; ethnographic observations; semi-structured interviews, and; focus group discussions. At the end of the pre-implementation phase, findings are fed back to stakeholders in participatory theory of change workshops that are used to select/adapt an initial set of contextually relevant HSSIs. To ensure a theory-informed approach across ASSET, implementation science determinant frameworks are also applied, to help identify any additional contextual barriers and enablers and complementary HSSIs. Outputs from these activities are used to finalise underlying assumptions, potential unintended consequences, process indicators and implementation and clinical outcomes. Conclusions: ASSET places a strong emphasis of the pre-implementation phase of the programme in order to provide an in-depth and systematic diagnosis of the existing heath system functioning, needs for strengthening and active stakeholder engagement. This approach will inform the design and evaluation of the HSSIs to increase effectiveness across work packages and contexts, to better understand what works, for whom, and how. Strengths and limitations of this study: The National Health Institute of Research (NIHR) Global Research Unit on Health System Strengthening in sub-Saharan Africa (ASSET) is a four-year programme (2017-2021) that is closely aligned with the SDG goal of UHC, and the recommendations of the Lancet Commission for High Quality Health Systems. The aim of ASSET is to develop and evaluate effective and sustainable HSSIs, promoting consistent delivery of high-quality, people-centred care. The ASSET programme is being conducted in two phases including the diagnostic pre-implementation and piloting/rolling implementation phase. The purpose of this paper is to describe the methodology for the pre-implementation phase, which has the core aim of mapping comprehensive care pathways of a patient’s journey though the health system including the community, different providers), and health facilities, documenting what care is provided at what level of the health system and the associated health system bottlenecks. At the end of the pre-implementation phase of ASSET, it is hoped the common approach taken across different countries, care platforms and health conditions will facilitate cross platform learning and understanding of how differences in health systems and broader contextual influences shaped the development of the interventions. The overarching expectation is that by using an in-depth participatory process to engage with the stakeholders and map care pathways to and through the health system, we develop a HSS programme that can be implemented at scale that meets the needs and priorities of the local community.

Introduction Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries. Methods Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000–October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a ‘common components’ logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability. Results 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients’ needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors. Conclusion Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care. PROSPERO registration number CRD42020150252.