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IntroductionPerson-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.MethodsSearch 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.ResultsPRISMA (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.ConclusionPerson-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.

BackgroundPerson-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.MethodsSystematic 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.ResultsWe 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.DiscussionPCC 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 numberCRD42018108302.

Background: The majority of deaths from chronic obstructive pulmonary disease (COPD) occur in low- and middle-income countries. Primary palliative care is commonly proposed as the best model to ensure access to appropriate care. However, the existing evidence on needs, models and outcomes comes from high-income settings. The purpose of the study was to determine the experiences of adults with COPD attending primary care, their informal caregivers and healthcare professionals to identify current care provided and gaps in this care in primary care settings in South Africa. Methods: Cross-sectional qualitative interview study collected in-depth data from three stakeholder groups: adults with COPD attending one of five primary care settings, informal carers of patients and healthcare professionals. The cross-national research team developed a coding frame through inductive thematic analysis. Results: The study participants comprised 22 COPD patients, 19 family caregivers and 22 healthcare professionals. Four main themes emerged. (1) Importance of communication to quality primary palliative care, with poor health literacy regarding the diagnosis and its progression. (2) Symptoms and concerns among patients and caregivers, with multidimensional impact on social participation, poverty and family mental health. (3) The role of health systems in promoting quality primary palliative care, with unreliable drug supply, the need for rapid access pathways during exacerbations and continuity of care from the acute sector through primary care into the home. (4) Patient preferences and agency, with patients favouring holistic assessment, self-management and adequate information and consultation to participate in decision-making. Discussion: Palliative care health literacy for COPD patients, families and staff attending primary settings may ensure well-planned continuous care, symptom management and support care at home.

Tertiary hospitals are multi-specialty centers where patients are referred for various treatment modalities, including cancer diagnosis and treatment. Often, cancer patients are admitted to hospitals several times. Palliative care (PC) promotes quality of life for patients, their families and caregivers and should be integrated into cancer care at hospitals. To review literature on PC pathways, models and frameworks for cancer care in hospitals. Hospitals in sub-Saharan Africa (SSA). The scoping review was conducted following the Preferred Reporting Items for Reviews and Meta-Analysis extension for Scoping Reviews checklist. Four databases (Medline, Embase, AMED and Scopus) were searched. Inclusion criteria were PC, pathway/ model/framework, cancer, hospital, SSA countries and articles with abstracts. Each database was searched using OR to link synonymous words, then AND to combine all keywords. Two documents of grey literature related to the topic were included. Findings were tabulated under author, year, title, location, PC pathways and cancers. Analysis was done using descriptive methods. Of the 264 articles screened, 15 (13 studies and two reports) were included. These were from eight SSA countries. Six of the studies had a model of PC provision in hospitals within the outpatient department or oncology unit and provided by any health worker and/or a trained PC team. The other studies did not have a model but highlighted the need for one. The need for PC for cancer patients in hospitals is recognised across SSA; however, countries are at different stages of developing hospital PC pathways. Findings will guide the formulation of a PC pathway for cervical and prostate cancer patients at a tertiary hospital in Harare Zimbabwe.

Many deaths globally are attributable to non-communicable disease, and four-fifths of these deaths are in low- and middle-income countries. Globally, COPD is currently the third leading cause of mortality. 1) To determine the prevalence and burden of symptoms and concerns, and 2) determine predicting factors of symptom burden among patients with COPD. A cross-sectional survey was conducted at eight primary care sites in Western Cape. We collected socio-demographic data (age, gender, smoking status, number of missed doses of prescribed medication in the last seven days) and clinical data (PEF and KPS). The Memorial Symptom Assessment Scale (MSAS), the Medical Outcomes Study, Social Support Survey (MOS-SSS), the London Chest Activity of Daily Living Scale (LCADLS) and the COPD Assessment Test (CAT) (impairment on person's life) were administered to patients. We conducted ordered logistic regression analysis to assess factors associated with the burden of symptoms. MSAS subscales: 1) Global symptom distress index, 2) physical symptom distress and 3) psychological symptom distress were dependent outcomes. We constructed three ordinal logistic regression models for each of the three subscales. Covariates were MOS-SSS, LCADLS, CAT, demographic and clinical variables. We recruited n=387 patients, mean age 59.5 years, 53.0% female. In multivariate analysis, each of the three models (ie, global, psychological and physical symptom distress) was positively associated with impairment on person's life p<0.001, difficulty to perform activities of daily living p<0.001, and low social support p<0.001. Old age was associated with lower global symptom distress (p=0.004), psychological and (0.014) physical distress (0.005). Missing 1 or more doses of medication was associated with higher levels of global (0.004) and physical (0.005) symptom distress. The high prevalence and burden of physical and psychological symptoms provides strong evidence of the need for integrating person-centred assessment and management of symptoms in primary care settings.

IntroductionPerson-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.MethodsCross-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.ResultsThe 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.ConclusionThe 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.

BackgroundPatients with advanced non-malignant diseases experience pain, dyspnoea and fatigue, requiring a rehabilitation approach within palliative care.AimTo identify components of non-pharmacological interventions for symptom self-management for patients with non-malignant chronic disease.MethodThis scoping review identifies: (1) systematic reviews of symptom self-management interventions for breathlessness, pain and fatigue in chronic lung, heart, renal and liver disease; (2) primary studies in low- and middle-income countries to identify intervention components, contextual factors, facilitators and barriers to symptom self-management. Six databases were searched, records exported to Rayyan and deduplicated. Following screening for inclusion, extraction was conducted. We conducted a narrative synthesis of intervention components and implementation factors, and content analysis of barriers and facilitators to interventions.ResultsThirty-one articles were included (21 systematic reviews and 10 primary studies). The populations studied had chronic lung disease (n = 19), heart disease (n = 12), chronic renal disease on dialysis (n = 2) and none had hepatic disease. The three most common intervention components were information, training and rehearsal for practical self-management activities and lifestyle support. Common patient barriers included motivation, adherence and health literacy, while facilitators encompassed knowledge, support and family involvement. The availability of healthcare workers can impact implementation, but remote access options should be considered.ConclusionDisease and management information for patients and their family members, along with support for home application, form the foundation for effective symptom self-management.ContributionSymptom self-management for non-malignant chronic diseases is uncommon in low-resource settings. This review outlines the necessary components and implementation considerations.

BackgroundThe South African National Policy Framework and Strategy on Palliative Care (NPFSPC) recommends that when integrating palliative care (PC) into the health system, a PC indicators tool should be used to guide clinicians to recognise a patient who should receive PC. The policy document recommends ‘a simple screening tool developed for use in South Africa that would assist healthcare professionals (HCPs) to recognise patients who may have unmet palliative care needs’.AimThis research study sought to develop South African consensus on indicators for PC to assist clinicians to recognise a patient in need of PC.SettingThe South African healthcare setting.MethodsA Delphi study was considered suitable as a methodology to develop consensus. The methodology was based on the Conducting and REporting of DElphi studies (CREDES) guidance on Delphi studies to ensure rigour and transparency in conducting and reporting. Six different Delphi rounds were used to develop consensus. Each round allowed participants to anonymously rate statements with predefined rating scales.ResultsCognisant of the disparities in healthcare provision and access to equitable healthcare in South Africa, the expert advisory group recommended, especially for South Africa, that ‘this tool is for deteriorating patients with an advanced life-limiting illness where all available and appropriate management for underlying illnesses and reversible complications has been offered’. The expert advisory group felt that disease-specific indicators should be described before the general indicators in the South African indicators tool, so all users of the tool orientate themselves to the disease categories first. This study included three new domains to address the South African context: trauma, infectious diseases and haematological diseases. General indicators for PC aligned with the original Supportive and Palliative Care Indicators Tool (SPICT) tool.ConclusionThe Supportive and Palliative Care Indicators Tool for South Africa (SPICTTM-SA) is a simple screening tool for South Africa that may assist HCPs to recognise patients who may have unmet PC needs.

Abstract Background Cancer is a main driver of death and serious health-related suffering. The growing body of evidence for early integration of palliative care alongside oncological treatment to optimizes patient-reported outcomes is almost exclusively from high-income countries, while the greatest need is in low- and middle-income countries (LMICs). We aimed to explore the perspectives of patients, families and clinical staff on what constitutes a feasible, acceptable and appropriate model of integrated palliative and oncology care in Zimbabwe. Materials and Methods We conducted an exploratory qualitative study underpinned by indicators for integrated oncology and palliative care. Participants comprised healthcare professionals, patients, and families. Semistructured guides were developed and iteratively refined. Deductive framework analysis was conducted to Hui’s evidence-based framework of integrated oncology and palliative care indicators. The data were then further inductively coded into the framework. Results Analysis of data from 45 stakeholders (n = 15 per group) identified 19 of 38 indicators (50%) aligned with Hui’s model, indicating partial and uneven integration. Alignment was strongest in clinical processes (n = 9) and education (n = 5), with more limited support for administration (n = 3) and structure (n = 2). No findings aligned with the research domain. Inductive coding identified 3 indicators that aligned with clinical processes (routine discussion of prognosis, advance care planning and goals), clinical structure (physical environment) and education (training needs). Discussion While the Hui model is broadly applicable, substantial contextual adaptation is required. Integration cannot be achieved through coordination alone and requires system-level investment in workforce, training, infrastructure, and policy. We propose a phased “minimum package” for integration tailored to Zimbabwe and similar LMIC settings.