Priorities for HIV and chronic pain research: results from a survey of individuals with lived experience.

The Global Task Force on Chronic Pain in HIV published seven research priorities in the field of HIV-associated chronic pain in 2019: (1) causes; (2) management; (3) treatment individualization and integration with addiction treatment; (4) mental and social health factors; (5) prevalence; (6) treatment cost effectiveness; and (7) prevention. The current study used a web-based survey to determine whether the research topics were aligned with the priorities of adults with lived experiences of HIV and chronic pain. We also collected information about respondents' own pain and treatment experiences. We received 311 survey responses from mostly US-based respondents. Most respondents reported longstanding, moderate to severe, multisite pain, commonly accompanied by symptoms of anxiety and/or depression. The median number of pain treatments tried was 10 (IQR = 8, 13), with medications and exercise being the most common modalities, and opioids being viewed as the most helpful. Over 80% of respondents considered all research topics either "extremely important" or "very important". Research topic #2, which focused on optimizing management of pain in people with HIV, was accorded the greatest importance by respondents. These findings suggest good alignment between the priorities of researchers and US-based people with lived experience of HIV-associated chronic pain.

Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes.

BACKGROUND: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. AIM: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs. DESIGN: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries. DATA SOURCES: Medline, Psychinfo, Global Health, Embase and CINAHL. RESULTS: Thirty-five publications were included. Nearly half took place in Asia (n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people's homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context. CONCLUSION: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.

Stakeholders' perspectives and requirements on pain self-management for adolescents living with HIV/AIDS in Malawi: a cross-sectional qualitative study.

Malawi has one of the highest HIV prevalence rates (8.9%), and data suggest 27% pain prevalence among adolescents living with HIV (ALHIV) in Malawi. Pain among ALHIV is often under-reported and pain management is suboptimal. We aimed to explore stakeholders' perspectives and experiences on pain self-management for ALHIV and chronic pain in Malawi. We conducted cross-sectional in-depth qualitative interviews with adolescents/caregiver dyads and healthcare professionals working in HIV clinics. Data were audio-recorded, transcribed verbatim and translated (where applicable) then imported into NVivo version 12 software for framework analysis. We identified three main themes: (1) Experiencing "total pain": adolescents experienced physical, psychosocial, and spiritual pain which impacted their daily life activities. (2) Current self-management approaches: participants prefer group-based self-management approaches facilitated by healthcare professionals or peers at the clinic focussing on self-management of physical, psychosocial, and spiritual pain. (3) Current pain strategies: participants used prescribed drugs, traditional medicine, and non-pharmacological interventions, such as exercises to manage pain. A person-centred care approach to self-management of chronic pain among ALHIV is needed to mitigate the impact of pain on their daily activities. There is a need to integrate self-management approaches within the existing structures such as teen clubs in primary care.

Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis.

OBJECTIVE: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. METHODS: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care. RESULTS: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters. CONCLUSION: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence.

BACKGROUND: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. AIM: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. DESIGN: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. DATA SOURCES: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. RESULTS: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS (n = 99 studies) or cancer (n = 59), from East (n = 72) and Southern (n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children's school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). CONCLUSIONS: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.

BACKGROUND: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. AIM: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. DESIGN: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/PARTICIPANTS: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. RESULTS: A total of 48 transcripts were analyzed. Mean age was 37 (range 19-75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. CONCLUSIONS: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe.

INTRODUCTION: Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders' data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. METHODS: We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care. RESULTS: Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. CONCLUSION: We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

Is symptom prevalence and burden associated with HIV treatment status and disease stage among adult HIV outpatients in Kenya? A cross-sectional self-report study.

People with HIV experience a high prevalence and burden of physical and psychological symptoms throughout their disease trajectory. These have important public and clinical health implications. We aimed to measure: the seven-day period prevalence of symptoms, the most burdensome symptoms, and determine if self-reported symptom burden is associated with treatment status, clinical stage and physical performance. We conducted a cross-sectional study among adult (aged at least 18 years) patients with HIV, attending HIV outpatient care in Kenya. Data was gathered through self-report using the Memorial Symptom Assessment Scale-Short Form (MSAS-SF), file extraction (sociodemographic data, treatment status, CD4 count, clinical stage) and through observation using the Karnofsky Performance Scale (KPS). Multivariable ordinal logistic regression assessed the association of symptom burden (MSAS-SF) controlling for demographic and clinical variables. Of the 475 participants approached, 400 (84.2%) participated. Ordinal logistic regression showed that being on HIV treatment was associated lower global distress index (in quartiles) (odds ratio .45, 95% CI .23 to .88; p = 0.019). Pain and symptom burden still persist in the era of antiretroviral therapy. Routine clinical practice should incorporate assessment and management of pain and symptoms irrespective of disease stage and treatment status in order to achieve the proposed fourth "90" in the UNAIDS 90-90-90 targets (that is good quality of life).

Does sexual behaviour of people with HIV reflect antiretroviral therapy as a preventive strategy? A cross-sectional study among outpatients in Kenya.

BACKGROUND: The World Health Organisation (WHO) advocates early initiation of HIV treatment as a prevention strategy among people living with HIV. There is strong evidence for the effectiveness of antiretroviral therapy (ART) as a preventive tool for HIV transmission. We aimed to determine the sexual behaviour of HIV outpatients and assess if it reflects the current preventive strategy for HIV transmission. METHODS: We conducted a cross-sectional study among adult (aged at least 18 years) patients with confirmed HIV diagnosis, and aware of their diagnosis, attending HIV outpatient care in Kenya. Data were gathered through self-report (using validated questionnaires) and file extraction. Multivariate logistic regression assessed the association between sexual risk taking behaviour controlling for gender, HIV clinical stage, HIV treatment status, Tuberculosis (TB) treatment status, and CD4 count. RESULTS: We recruited n = 400 participants (n = 280[70%] female gender). The mean age was 39.4 (SD = 9.9) years. The mean CD4 count was 393.7 (SD = 238.2) and ranged from 2 to 1470 cells/mm3. N = 61 (15.64%) were on TB treatment. The majority (n = 366, 91.5%) were on ART. Just over half (n = 202, 50.5%) reported having a sexual partner. Of these n = 33 (16.1%) reported having unprotected sexual intercourse with a person of unknown HIV status in the previous 3 months. Multivariate analysis showed that participants not on ART (HIV treatment) were more likely to report unprotected sexual intercourse compared to those who were on ART (odds ratio .25, 95% CI .09 to .69; P = 0.007). Participants at early stage of HIV infection (stages 1/2) were more likely to report unprotected sexual intercourse compared to participants at advanced HIV infection (stages 3/4) (odds ratio .34, 95% CI .13 to .92; P = 0.035). Males participants were more likely to be involved in sexual risk taking behaviours compared to female participants (odds ratio .36, 95% CI .16 to .82; P = 0.015). TB treatment status, and CD4 count were not significantly associated with sexual risk taking. CONCLUSION: Participants not on ART have more unprotected sexual intercourse than those who are on ART. This calls for the need to scale up coverage and early ART initiation in order to reduce transmission of HIV.

Does being on TB treatment predict a higher burden of problems and concerns among HIV outpatients in Kenya? a cross-sectional self-report study.

Tuberculosis illness is associated with uncertain outcomes, and has high prevalence among people living with HIV. The new World Health Organization's End TB strategy specifies person-centred symptom management and psychosocial support alongside treatment within its pillars and components. There is a paucity of research to inform an effective care response in Kenya in terms of self-reported outcomes. We aimed to measure the three day period intensity of problems and concerns (physical, psychological, social and spiritual), and identify predictors of problems and concerns, among HIV patients attending outpatient care. We conducted a cross-sectional self-report quantitative study among adult (aged at least 18 years) patients with confirmed HIV diagnosis, and aware of their diagnosis and attending HIV outpatient care in Kenya. Multi-dimensional palliative care problems and concerns were collected using African Palliative Outcome Scale (APOS). Ordinal logistic regression assessed the association of multi-dimensional problems and concerns controlling for demographic variables (age, gender, education and wealth) and clinical variables (WHO clinical stage, HIV treatment status, TB treatment status, and CD4 count). We recruited N = 400 participants. N = 61 (15.64%) were on TB treatment. The items with worst score responses were help and advice to plan for the future (52.5%), ability to share feelings (46.25%), at peace (30.75%) pain (27%) and life worthwhile (18.75%). TB treatment status was associated with lower (worse) score for APOS total score (odds ratio .59, 95% CI .36 to .99; P = 0.046) and factor 3(existential and spiritual wellbeing: .55, .32 to .92; p = 0.023). Interestingly higher CD4 count was predictive of lower (worse) factor 3 outcomes (existential and spiritual wellbeing: .84, 95% CI 73 to .97; p = 0.014). This study informs the new WHO End TB policy with novel data on specific clinical needs. This calls for holistic symptom assessment, person-centred care and holistic management to respond positively to the End TB strategy.

Opioid prescribing for cancer pain in Latin America: systematic review.

OBJECTIVE: To explore opioid prescribing patterns for cancer pain in Latin America (LA). METHODS: A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Relevant databases, including MEDLINE, EMBASE, PubMed, LILACS and Scielo, were searched from inception to June 2023. Empirical studies of opioid prescription patterns in adult palliative care patients with cancer pain were included. Methodological quality was assessed using the Effective Public Health Practice Project tool. Data were analysed using narrative synthesis. Descriptive statistical analyses were conducted using SPSS V.28 (IBM). Categorical variables were summarised using frequencies and percentages and continuous variables as means or medians. RESULTS: Seventeen studies from six countries were included. Ten were observational, while seven were experimental, including five randomised controlled trials (RCT) and two non-RCT. Most were low or moderate methodological quality. Out of 7809 patients, morphine (54%) and tramadol (18%) were the most prescribed opioids. The median of morphine equivalent daily dose was 26 mg (IQR 26-41). CONCLUSION: Latin America shows lower opioid consumption rates compared with high-income countries for control pain management (CPM). More rigorous research on CPM in LA is needed. Additionally, a comprehensive review of opioid prescription patterns, including non-cancer diagnoses, is necessary.

Improving person-centred care for older persons with serious multimorbidity in LMICs.

BACKGROUND:  Few interventions are documented to meet person-centred needs of older people with serious multimorbidity in low- and middle-income countries where access to palliative care is limited. Most of the care in these settings is delivered by primary care health workers. AIM:  This study reports the development and acceptability testing of a communication skills training and mentorship intervention for primary health care workers in Malawi. SETTING:  This study was conducted at Mangochi District Hospital in the south-eastern region of Malawi. METHODS:  Twelve primary health care workers (four clinical officers and eight nurses) working in the primary care clinics received the intervention. The intervention was designed using modified nominal group technique, informed by stakeholder interviews and a theory of change workshop. Acceptability is reported from thematic analysis of a focus group discussion with primary health care workers who received the intervention using NVivo version 14. RESULTS:  Older persons with serious multi-morbidity and their caregivers identified a need for enhanced communication with their healthcare providers. This helped to inform the development of a communication training skills and mentorship intervention package based on the local best practice six-step Ask-Ask-Tell-Ask-Ask-Plan framework. Primary health care workers reported that the intervention supported person-centred communication and improved the quality of holistic assessments, although space, workload and availability of medication limited the implementation of person-centred communication. CONCLUSION:  The Ask-Ask-Tell-Ask-Ask-Plan framework, supported person-centered communication and improved the quality of holistic assessment.Contribution: This intervention offers an affordable, local model for integrating person-centered palliative care in resource-limited primary healthcare settings.

Improving bereavement outcomes in Zimbabwe: results of a feasibility cluster trial of the 9-cell bereavement tool.

CONTEXT: Despite high mortality rates from both communicable and non-communicable diseases, bereavement is under-researched in African countries. The 9-cell bereavement tool was designed to assist individuals to reflect on their feelings about bereavement and identify resources in families and communities to manage bereavement. This study aimed to determine the feasibility of implementing the 9-cell bereavement tool and recruitment to experimental evaluation. METHODS: A feasibility cluster randomized trial with embedded qualitative interviews was conducted in two comparable neighbourhoods in Chitungwiza, Zimbabwe. Community leaders identified potential community lay bereavement supporters (interventionists). Each community lay bereavement supporter recruited two to three recently bereaved community members (trial participants). Following baseline data collection, the communities were randomly allocated to intervention or wait-list control. Self-administered questionnaires were completed at T0 (month 0), T1 (3 months) and T2 (6 months). Grief, mental health and social support were assessed. Focus group discussions with selected interventionists described training impact and intervention processes. Quantitative and qualitative analyses were performed. RESULTS: Implementation of the nine-cell bereavement tool and recruitment to experimental evaluation were successful. Implementation of the tool and the recruitment of study participants were conducted within the intended timeframe of 3 weeks. In line with the suggested sample size, the study was able to recruit and retain at least 75% of the trial participants for the total duration of the study. CONCLUSION: The feasibility cluster trial was successfully implemented and assessed. Through the published protocol, the literature review and the results of this study, it has been noted that there is an urgent need to carry out a full trial in this subject matter, not only as a contribution to the currently sparse literature in this regard, but for the enormous potential public health benefit in supporting and saving lives in many more under-resourced and under-supported countries. TRIAL REGISTRATION: Protocol registration: http://www.isrctn.com/ISRCTN16484746 . Protocol publication: https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-019-0450-5.

High Prevalence and Burden of Physical and Psychological Symptoms in a Chronic Obstructive Pulmonary Disease Population in Primary Care Settings in South Africa.

Background: 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. Research Question: 1) To determine the prevalence and burden of symptoms and concerns, and 2) determine predicting factors of symptom burden among patients with COPD. Methods: 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. Results: 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. Interpretation: 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.

The role of digital health in palliative care for people living with HIV in sub-Saharan Africa: A systematic review.

Background: In 2018, 26.6 million people were living with HIV in sub-Saharan Africa. Palliative care services are recommended for people living with HIV at all stages from diagnosis through to end-of-life. However, the provision of palliative care in sub-Saharan Africa is limited, leading to little or no access for the majority of patients. Digital technologies in sub-Saharan Africa present an opportunity to improve access to palliative care for people living with HIV in the region. This review synthesised literature on digital health interventions for palliative care for people living with HIV in sub-Saharan Africa and assessed their effects on patient outcomes. Methods: Literature searches were conducted in MEDLINE, Embase, PsycINFO and Global Health. Inclusion and exclusion criteria were applied. Two independent reviewers conducted study screening, data extraction and quality appraisal. A narrative synthesis was performed to draw together and report findings across heterogeneous studies. Reporting of this review follows the Preferred Reporting Items for Systematic Review and Meta-Analysis checklist. Results: Out of 4117 records, 25 studies were included, covering 3592 people living with HIV, across 21 countries. Studies included three randomised controlled trials, three qualitative, three pre- and post-test, two observational, two case series, six cross-sectional and six mixed methods studies. Telemedicine was the most reported digital health intervention, with 12 studies demonstrating the effectiveness of digital health interventions. Conclusion: Emerging evidence suggests digital health interventions can be effective in facilitating patient-provider communication and health professional decision-making as a part of palliative care for people living with HIV. There is a need for further development and evaluation of digital health interventions alongside determining optimal approaches to their implementation as a part of palliative care provision in sub-Saharan Africa.

Overcoming COVID-19 vaccine hesitancy among ethnic minorities: A systematic review of UK studies.

Ethnic minority communities in the UK have been disproportionately affected by the pandemic, with increased risks of infection, severe disease, and death. Hesitancy around the COVID-19 vaccine may be contributing to disparities in vaccine delivery to ethnic minority communities. This systematic review aims to strengthen understanding of COVID-19 vaccine concerns among ethnic minorities in the UK. Five databases were searched in February 2022, yielding 24 peer-reviewed studies reporting on vaccine hesitancy or acceptance in ethnic minority groups. Data were extracted using a standardised form, and quality assessment was carried out using the Standard Quality Criteria. There were three key themes: (1). Prevalence of vaccine hesitancy; (2). Reasons for vaccine hesitancy and acceptance; and (3). Recommendations to address vaccine concerns. Vaccine hesitancy, which was more common among some ethnic minority groups, is a complex phenomenon, driven by misinformation, mistrust, concerns about safety and efficacy, and structural and systemic inequities. Community engagement and tailored communication may help to address vaccine concerns. Robust data disaggregated by ethnicities are needed to better understand barriers and facilitators for COVID-19 vaccine delivery in ethnic minority communities. Strategies to address structural disadvantage need to be inclusive, comprehensive, and behaviorally informed and foster confidence in healthcare systems and governments. Community leaders and health care practitioners may prove to be the most important agents in creating an environment of trust within ethnic minority groups.

Integrated Primary Palliative Care in Nigeria- Perspectives of Patients, Families and Providers.

BACKGROUND: Palliative care should be integrated into primary healthcare systems within low- and middle-income countries to achieve Universal Health Coverage goals. We aimed to identify preferences and expectations for primary palliative care among people living with serious illness and their families and the readiness of primary healthcare providers to deliver primary palliative care in Nigeria. METHODS: Qualitative descriptive interview study with 48 participants: people living with serious illness (n=21) and their family caregivers (n=15), healthcare providers (n=12). Data were analysed using thematic analysis. RESULTS: Three major themes were identified. 1.) Engaging patients and families. 2.) Managing patients and families' expectations and preferences. 3.) Addressing staffing-related issues. Patients and families have existing trust and bonds from using primary healthcare but lack individual agency necessary for person-centered care decisions. They expect an easily accessible service, opportunities for social interaction and adequate communication. Development of healthcare providers is needed to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation. CONCLUSIONS: Our findings have identified specific approaches to implement the WHO policy on integrated primary palliative care. Palliative care integration within primary healthcare in Nigeria can be achieved through building information and communication skills of healthcare providers, engaging and empowering patients to exercise their agency in care decisions, and adequately delineating healthcare providers' roles to ensure staff work within their competencies and training.

A systematic review of impact of person-centred interventions for serious physical illness in terms of outcomes and costs.

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.