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PURPOSE The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa. METHODS This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development. RESULTS We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans. CONCLUSION This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems., Countries must prioritize integration of pediatric palliative care in SSA pediatric oncology.

Context Palliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost. Objectives We aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries. Methods The study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care. Results We retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management. Conclusions Comprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries.

Background: The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Aim: The objective of this paper is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In phase one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition. Results: The consensus-based definition is “Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.” The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to palliative care. Conclusions: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering, and those who believe that PC describes the care of those with a very limited remaining life span.

Context Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. Objectives This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.

Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. Results: A total of 120 interviews were conducted with children with life-limiting conditions ( n = 61; age range: 7–17 years), and where self-report was not possible, caregivers ( n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.

Summary Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005–16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries.

PURPOSE The purpose of this study was to describe follow-up care for breast and colorectal cancer survivors in countries with varying levels of resources and highlight challenges regarding posttreatment survivorship care. METHODS We surveyed one key stakeholder from each of 27 countries with expertise in survivorship care on questions including the components/structure of follow-up care, delivery of treatment summaries and survivorship care plans, and involvement of primary care in survivorship. Descriptive analyses were performed to characterize results across countries and variations between the WHO income categories (low, middle, high). We also performed a qualitative content analysis of narratives related to survivorship care challenges to identify major themes. RESULTS Seven low- or /lower-middle-income countries (LIC/LMIC), seven upper-middle-income countries (UMIC), and 13 high-income countries (HICs) were included in this study. Results indicate that 44.4% of countries with a National Cancer Control Plan currently address survivorship care. Additional findings indicate that HICs use guidelines more often than those in LICs/LMICs and UMICs. There was great variation among countries regardless of income level. Common challenges include issues with workforce, communication and care coordination, distance/transportation issues, psychosocial support, and lack of focus on follow-up care. CONCLUSION This information can guide researchers, providers, and policy makers in efforts to improve the quality of survivorship care on a national and global basis. As the number of cancer survivors increases globally, countries will need to prioritize their long-term needs. Future efforts should focus on efforts to bridge oncology and primary care, building international partnerships, and implementation of guidelines.

Background: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. Aim: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. Methods: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. Results: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1–10 scale). Conclusion: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.

The central principle of "balance" represents the dual obligation of governments to establish a system of control that ensures the adequate availability of controlled substances for medical and scientific purposes while simultaneously preventing their nonmedical use, diversion, and trafficking, two primary goals of the international control system. On the one hand, although strong opioids, including morphine, are absolutely necessary for the relief of severe pain, legitimate access to opioids for pain treatment and palliative care is lacking in the majority of the world's countries. On the other hand, in a few high-income countries with higher consumption of prescription opioids, diversion and nonmedical use are increasingly prevalent. This report presents examples of unbalanced systems and a joint statement from global and regional palliative care organizations to promote development of balanced systems for optimal public health outcomes. Although nonmedical use of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor to interfere in their legitimate medical use for patient care. As representatives of palliative care organizations, we urge heads of state to act and to take measures to ensure and restore balanced systems in their countries and call on public health leaders and regulators to work together.

Context To date, there is no study comparing palliative care (PC) development among African countries. Objectives To analyze comparatively PC development in African countries based on region-specific indicators. Methods Data were obtained from the African PC Association Atlas of PC in Africa, and a comparative analysis was conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the World Health Organization public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52 of 54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. Results Surveys were received from 89% (48 of 54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; and in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. Conclusion Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.

Background Access to palliative care (PC) in Uganda has been hampered by the lack of prescribers. Thus PC care trained nurses have been able to prescribe since 2004, however, no full scale evaluation had been undertaken, despite the fact that PC stakeholders are advocating for nurse prescribing in other countries. Thus an evaluation was undertaken to determine the effectiveness of PC nurse prescribing in Uganda. Methodology The mixed methods evaluation was undertaken in three parts: Preparation of the nurses for the role; Assessing and managing pain & symptoms; An appraisal of the system in which the nrses are working. Ethical approval was gained prior to the evaluation commencing. Results Training: the curriculum prepares the nurses well, however, a few adaptions are recommended to strengthen it further. Themes identified from 18 interviews included: the training itself, supervision and mentorship, compentency, and beliefs. Assessing and managing pain: 22 nurses were recruited to care for 20 PC patients each, visiting them on at least 2 occassions, assessing and managing their pain and other symptoms, and utilising the APCA POS. Analysis demonstrates nurses are able to assess and manage pain, giving appropriate mediciations and reassessing. The appraisal in 10 districts, showed nurses are working in a system which can impact negatively on care provision e.g. stck–outs of analgesics, limited understanding of PC generally: and many myths exist re the use of morphine and provision of PC. Trained palliative care nurses can assess and manage patients pain, prescribing morphine and associated medications appropriately. Whilst challenges exist, recommendations are made to improve the system, this evaluation has clearly shown the benefit and safety of nurse prescribing for PC in Uganda. This study has important implications for the global debate on issues of access to oral morphine and task shifting.Conclusion

Non-communicable diseases (NCDs) in Africa have been comparatively neglected, partly due to donor-driven funding priorities. This is despite NCDs being the principal cause of mortality globally, with the majority incidence occurring in low-income and middle-income nations. Most of the patients with NCDs will suffer from pain, breathlessness and other physical symptoms, or need support with psychosocial or spiritual problems. Reflecting regional disease prevalence, late-stage clinical presentation, limited funding and restricted access to curative therapies, palliative care need in Africa is significantly high. Although palliative care provision has advanced significantly on the continent in the past decade, much of this development was driven by services for adult HIV patients. However, recent international and regional political declarations and commitments constitute a new global NCD agenda that calls for the integration of palliative care into the NCD response. This could be achieved under a chronic care model of service provision in partnership with other clinical providers in an integrated care continuum spanning prevention, early detection, diagnosis, treatment, survivorship and the end of life. Four important challenges have to be addressed if palliative care is to contribute meaningfully to this NCD agenda: (1) existing variation in the ability of countries to deal with NCDs per se; (2) ensuring clinical partners are integrated effectively with palliative care; (3) agreeing implementation is linked to relevant national-level and patient-level metrics; and (iv) underpinning palliative care and NCD care with a rigorous and locally relevant evidence base demonstrating appropriate, feasible and effective care.

Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (“PAL-LIFE group”). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.

Palliative care has been shown to provide significant and diverse benefits for patients with serious, complex, or life-limiting health problems. Such benefits include the following: Reduced physical, psychological, and spiritual suffering (Abernethy and others 2003; Gwyther and Krakauer 2011; Higginson and others 2014; Krakauer 2008; Singer and others 2016; Temel and others 2010; WHO 2008; Zimmerman and others 2014) Improved quality of life (Singer and others 2016; Zimmerman and others 2014) Prolonged survival in some situations (Connor and others 2007; Temel and others 2010). Palliative care also can lower costs to health care systems (Chalkidou and others 2014; DesRosiers and others 2014; Gomez-Batiste and others 2012; Jamison and others 2013; Knaul and others 2017; Summers 2016). For these reasons, it is recognized globally as an ethical responsibility of all health care systems and a necessary component of universal health coverage (World Health Assembly 2014). Yet palliative care is rarely accessible in low- and middle-income countries (LMICs). This chapter describes an essential package (EP) of palliative care services and treatments that could and should be accessible to everyone everywhere, as well as the sites or platforms where those services and treatments could be offered. Thus, it was necessary to make a preliminary estimate of the burden of health-related suffering requiring palliative care.To roughly estimate the need for palliative care, we identified the serious, complex, or life-limiting conditions listed in the International Classification of Diseases (ICD)-10 that most commonly result in physical, psychological, social, or spiritual suffering (WHO 2015a). We then estimated the types, prevalence, and duration of suffering resulting from each condition. On the basis of this characterization of the burden of suffering, we propose an EP of palliative care and pain control designed to do the following: Prevent or relieve the most common and severe suffering related to illness or injury. Be affordable, even in LMICs. Provide financial risk protection for patients and families by providing a realistic alternative to expensive, low-value treatment. We costed the EP in one low-income country (Rwanda), one lower-middle-income country (Vietnam), and one upper-middle-income country (Mexico) and projected these costs for LMICs in general (Knaul and others 2017). At the conclusion of this chapter, we provide guidance on how to integrate the EP into health systems as an essential element of universal health coverage (UHC) in LMICs. We also discuss how to augment the EP as soon as is feasible to further prevent and relieve suffering.This chapter draws directly on the work of the Lancet Commission on Global Access to Palliative Care and Pain Control (the Lancet Commission) (Knaul and others 2017).

Indicators specific to the African context are important to measure palliative care (PC) development accurately.To describe the process used to develop a set of PC macroindicators for Africa.Open-ended interviews on national PC development were conducted with five African Country Experts. Indicators were rated (1-4) by 14 Country Experts for validity and feasibility. An additional 11 interviews were conducted to ensure indicator saturation. Indicators scoring ≥3 proceeded to a modified two-round RAND/UCLA Delphi with global experts on PC development (International Committee). Finally, indicators were ranked by the project team.Sixteen country experts from 7 African countries and 14 International Committee members.One hundred three indicators were rated by Country Experts, and 58 proceeded to the Delphi. Thirty-eight indicators were rated as important by the International Committee, and the project team ranked 19 of these as most important. Service indicators (n = 6) included the number of types of services most important in Africa (e.g., hospices, home based) and coverage. Policy indicators (n = 4) included the existence of PC in national policies, guidelines, and budget and a responsible person. Education indicators (n = 3) consisted of inclusion of PC in medical and nursing curricula and recognition as a specialty. Medicine indicators (n = 4) focused on morphine availability, consumption, and prescribing barriers. Vitality indicators (n = 2) reflected the existence of a national association and its activity.The process to develop African-specific PC indicators resulted in 19 indicators that were used to measure PC development as a comparative baseline for development in African countries.

Context Sub-Saharan Africa faces an increasing incidence and prevalence of life-limiting and life-threatening conditions. These conditions are associated with a significant burden of pain linked to high morbidity and disability that is poorly assessed and undertreated. Barriers to effective pain management partly relate to lack of access to opioid analgesia and challenges in their administration. Objectives To identify country-specific and broader regional barriers to access, as well as the administration of opioids, and generate recommendations for advancing pain management in Southern Africa. Methods A parallel mixed methods design was used across three countries: Mozambique, Swaziland and Zimbabwe. Three activities were undertaken: (i) a review of regulatory and policy documentation; (ii) group interviews, and; (iii) a self-administered key informant survey. Results Barriers to accessing opioid analgesics for medical use include: overly restrictive controlled medicines’ laws; use of stigmatizing language in key documents; inaccurate actual opioid consumption estimation practices; knowledge gaps in the distribution, storage and prescription of opioids; critical shortage of prescribers, and; high out-of-pocket financial expenditures for patients against a backdrop of high levels of poverty. Conclusion Policies and relevant laws should be updated to ensure the legislative environment supports opioid access for pain management. Action plans for improving pain treatment for patients suffering from HIV or non-communicable diseases should address barriers at the different levels of the supply chain that involve policymakers, administrators and service providers.

Palliative care (PC) research in Africa has been proposed as a fifth dimension of the World Health Organization PC Public Health Strategy. We conducted a scoping review of published articles (2005-2016) on palliative care development (PCD) in African countries. Forty-seven articles were found across 26 countries.To study whether the number of published articles on PCD in countries in Africa can be used as an indicator of PCD.This is a secondary analysis of a completed scoping review.Spearman correlations were applied to the number of published articles ("published articles") and the number of published articles with a coauthor from a high-income country (HIC) ("HIC published articles") with level of PCD using Lynch et al's updated world map (PC World Map) as a proxy. A subanalysis was undertaken for Anglophone versus non-Anglophone countries.There were positive Spearman correlations (r) between the PC World Map's levels and published articles (r = 0.73; p 0.001), and with HIC published articles (r = 0.68; p 0.001). For Anglophone countries, the r was statistically significant (p 0.001) at 0.69 and 0.70, versus 0.58 and 0.45 for non-Anglophone countries for published articles and HIC published articles, respectively. Kruskal-Wallis test showed a statistically significant difference between Anglophone and non-Anglophone countries for both published articles and HIC published articles (p 0.01).Published articles and HIC published articles on PCD in Africa had strong positive r's with the PC World Map. These measures may be considered as two indicators of PCD for countries in Africa, particularly for Anglophone countries.

BackgroundThe WHO is calling for the integration of palliative care in all health care settings globally.MethodsA 3.5–year program was implemented in 12 government hospitals, three each in Kenya, Rwanda, Uganda and Zambia. A four–pillared approach of advocacy, staff training, service delivery strengthening and international and regional partnership working was utilized. A baseline assessment was undertaken to ascertain needs, and 27 indicators were agreed to guide and evaluate the intervention. Data were also collected through surveys, interviews and focus groups.ResultsPalliative care was integrated into all 12 hospital settings to various degrees through concurrent interventions of these four approaches. Overall, 218 advocacy activities were undertaken and 4153 community members attended awareness training. 781 staff were equipped with the skills and resources to cascade palliative care through their hospitals and into the community. Patients identified for palliative care increased by a factor of 2.7. All 12 hospitals had oral morphine available and consumption increased by a factor of 2.4 over two years. Twenty–two UK mentors contributed 750 volunteer days to support colleagues in each hospital transfer knowledge and skills.ConclusionsIntegration of palliative care within different government health services in Africa can be achieved through agreed interventions being delivered concurrently. These include advocacy at Ministry, Provincial and District level, intensive and wide–ranging training, clinical and support services supported by resources, including essential medicines, and an investment in partnerships between hospital, district and community.

Context Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. Objectives To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. Methods About 16 PC experts from seven African countries undertook semistructured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison. Results Emerged themes included drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education; lack of standardization in implementation; limited availability of and/or accessibility to morphine; poverty and disease burden; and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed. Conclusion The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates who built on existing strengths to maximize opportunities. However, the current approach is at high risk in terms of its sustainability, and strategies for maximizing existing resources and growing infrastructure support are needed moving forward.

It is of serious concern that there is a lack of focus on pain management in patients with cancer in Africa. Most patients with cancer present with advanced disease on diagnosis, experiencing moderate to severe pain and in need of palliative care. Integration of palliative and oncology care is recommended by European Society of Medical Oncology (ESMO) and by the World Health Assembly resolution WHA67.19. At the recent ESMO Summit Africa 2020, a Pain Workshop was attended by representatives from across Africa. A consensus was reached to escalate concerns about lack of pain management in patients with cancer in Africa and to call on ESMO to make universal cancer pain control, and int egrated oncology and palliative care as an immediate priority area. Many developed countries are concerned about the overuse of opioids. However, in Africa, opioid consumption has decreased during the last decade from a low level below the global average to a totally inadequate level.1 This problem is …

IntroductionPalliative care is a clinically and cost‐effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.Methods and analysisThis is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.Ethics and disseminationEthics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18–032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19–2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.Trial registration numberISRCTN15727711

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

Given the high unmet need for palliative care in Africa and other resource limited settings, it is important that countries embrace the public health approach to increasing access through its integration within existing healthcare systems. To give this approach a strong foundation that would ensure sustainability, the World Health Organisation urges member states to ensure that policy environments are suitable for this intervention. The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process. This article shares experiences with regard to best practices when advocating the national palliative care policies. It also tells about policy development process, the important considerations, and cites examples of policy content outlines in Africa.

Background: Medicine availability is improving in sub-Saharan Africa for palliative care services. There is a need to develop strong and sustainable pharmaceutical systems to enhance the proper management of palliative care medicines, some of which are controlled. One approach to addressing these needs is the use of mobile technology to support data capture, storage and retrieval. Utilizing mobile technology in healthcare (mHealth) has recently been highlighted as an approach to enhancing palliative care services but development is at an early stage. Methods: An electronic application was implemented into palliative care services at two settings in Uganda; a rural hospital and an urban hospice. Measures of the completeness of data capture, time efficiency of activities and the changes to medicines stock and waste management were taken pre- and post-implementation to identify changes to practice arising from the introduction of the application. Results: Improvements in all measures were identified at both sites. The application supported the registration and management of 455 patients and a total of 565 consultations. Improvements in both time efficiency and medicines management were noted. Time taken to collect and report pharmaceuticals data was reduced from 7 days to 30 minutes and 10 days to 1 hour at the urban hospice and rural hospital respectively. Stock expiration reduced from 3% to 0.5% at the urban hospice and from 58% to 0% at the rural hospital. Additional observations relating to the use of the application across the two sites are reported. Conclusions: A mHealth approach adopted in this study was shown to improve existing processes for patient record management, pharmacy forecasting and supply planning, procurement, and distribution of essential health commodities for palliative care services. An important next step will be to identify where and how such mHealth approaches can be implemented more widely to improve pharmaceutical systems for palliative care services in resource limited settings.

The results are presented from a 2005 survey of 377 women in four HIV/AIDS treatment programs in Uganda. The aim of the study was to explore women's economic hardships and the association with four sexual risk behaviors: whether a woman was sexually active in the last 12 months, whether a condom was used during the last sex act, whether she reported having had a sexual partner in the last six months who she suspected had multiple partners and report of forced, coercive or survival sex in the last six months. Few women were sexually active (34%), likely due to the high proportion of widows (49%). Married women were likely to report forced, coercive or survival sex (35%). Eighty-four percent of women reported condom used at last sex act. Forced, coercive or survival sex was associated with number of meals missed per week (AOR=1.125, 95% CI 1.11, 1.587, p0.05). Sex with a partner in the last six months who a woman suspected had multiple partners was also associated with number of missed meals per week (AOR=2.080, 95% CI 1.084, 3.992). Currently women in Ugandan antiretroviral therapy programs are not likely to be sexually active, except for married women. Many women need to find food and other support, which may put them at risk of forced, coercive or survival sex due to dependency on men.

The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation.

Family-centred HIV care models have emerged as an approach to better target children and their caregivers for HIV testing and care, and further provide integrated health services for the family unit's range of care needs. While there is significant international interest in family-centred approaches, there is a dearth of research on operational experiences in implementation and scale-up. Our retrospective case study examined best practices and enabling factors during scale-up of family-centred care in ten health facilities and ten community clinics supported by a non-governmental organization, Mildmay, in Central Uganda. Methods included key informant interviews with programme management and families, and a desk review of hospital management information systems (HMIS) uptake data. In the 84 months following the scale-up of the family-centred approach in HIV care, Mildmay experienced a 50-fold increase of family units registered in HIV care, a 40-fold increase of children enrolled in HIV care, and nearly universal coverage of paediatric cotrimoxazole prophylaxis. The Mildmay experience emphasizes the importance of streamlining care to maximize paediatric capture. This includes integrated service provision, incentivizing care-seeking as a family, creating child-friendly service environments, and minimizing missed paediatric testing opportunities by institutionalizing early infant diagnosis and provider-initiated testing and counselling. Task-shifting towards nurse-led clinics with community outreach support enabled rapid scale-up, as did an active management structure that allowed for real-time review and corrective action. The Mildmay experience suggests that family-centred approaches are operationally feasible, produce strong coverage outcomes, and can be well-managed during rapid scale-up.

This case report describes an HIV-positive patient with recurrent tuberculosis in Uganda. After several failed courses of treatment, the patient was diagnosed with multi-drug resistant tuberculosis (MDR-TB). As adequate in-patient facilities were unavailable, we advised the patient to remain at home, and he received treatment at home via his family and a community nurse. The patient had a successful clearance of tuberculosis. This strategy of home-based care represents an important opportunity for treatment of patients in East Africa, where human resource constraints and inadequate hospital facilities exist for complex patients at high risk of infection to others.

Purpose: Despite high levels of depression among persons living with HIV (PLWHIV), little research has investigated the relationship of depression to work status and income in PLWHIV in sub-Saharan Africa, which was the focus of this analysis. Methods: Baseline data from a prospective longitudinal cohort of 798 HIV patients starting antiretroviral therapy in Kampala, Uganda were examined. In separate multivariate analyses, we examined whether depressive severity and symptom type [as measured by the Patient Health Questionnaire (PHQ-9)] and major depression [diagnosed with the Mini International Neuropsychiatric Interview (MINI)] were associated with work status and income, controlling for demographics, physical health functioning, work self-efficacy, social support and internalized HIV stigma. Results: 14% of the sample had Major Depression and 66% were currently working. Each measure of depression (PHQ-9 total score, somatic and cognitive subscales; Major Depression diagnosis) was associated with not working and lower average weekly income in bivariate analysis. However, none of the depression measures remained associated with work and income in multivariate analyses that controlled for other variables associated with these economic outcomes. Conclusions: These findings suggest that while depression is related to work and income, its influence may only be indirect through its relationship to other factors such as work self-efficacy and physical health functioning.

Cytomegalovirus (CMV), a member of the herpesvirus family, was a familiar cause of blindness and death in patients with advanced AIDS in Western countries prior to the introduction of highly active antiretroviral therapy (HAART). CMV retinitis then occurred in roughly one-third of patients with AIDS, and accounted for over 90% of cases of HIV-related blindness [1]. Extraocular CMV disease was a major cause of AIDS-related morbidity and mortality [2]. CMV retinitis is now clinically infrequent in patients with AIDS in developed countries, thanks to the widespread availability of HAART, although the problem has not disappeared [3,4]. Successful fundamentals of management are screening eye examinations in patients with low CD4 counts, and effective anti-CMV treatment with ganciclovir and related compounds, combined with HAART. In developing regions of the world where the HIV/AIDS pandemic is rapidly unfolding, CMV retinitis is a neglected disease, largely undiagnosed and untreated. Workable diagnostic and therapeutic strategies have not yet been defined, and CMV is absent from current and pending World Health Organization (WHO) guidelines for the management of HIV in resource-limited settings. Similarly, the WHO’s ambitious “Vision 2020” program, which seeks to provide guidance on the use of ophthalmologic resources until the year 2020, fails to mention CMV retinitis. The scale of the CMV problem in developing regions is still not known, as most cases of CMV retinitis are never diagnosed. Routine retinal examination is rarely performed and the diagnosis may not be considered unless a patient has damaged vision, or even becomes irreversibly blind. Mortality due to extraocular CMV disease is almost impossible to attribute without autopsy, and so is wrongly ascribed, usually to “advanced HIV infection” or tuberculosis. Yet it has been estimated that “between 5% and 25% of all HIVinfected patients in the developing world can be expected to develop this blinding disorder at some point during the course of their illness” [5], leading some to warn of a possible “epidemic of blindness” [6]. Recent direct evidence for the substantial scope of this neglected problem comes from a tertiary care ophthalmology center in Chang Mai, Thailand, where in a large consecutive series of referrals, 19% of the cases of bilateral blindness were caused by CMV retinitis, following only cataract as a cause of blindness, and exceeding glaucoma, age-related macular degeneration, and diabetic retinopathy [7]. In this article we provide preliminary data describing the problem and suggest possibilities for management of CMV retinitis in resource-poor settings. Our observations are based on the clinical experience from Medecins Sans Frontieres (MSF) HIV/AIDS projects in Cambodia, South Africa, Lesotho, Myanmar, Thailand, and China, and on field assessments of four of these programs, and other programs at other locations, by the corresponding author (DH), an ophthalmologist with clinical training and experience with uveitis and CMV retinitis. Epidemiology In developing countries CMV infection is usually acquired in childhood, and nearly 100% of adults are seropositive [8,9,10]. Like other herpesvirus infections, CMV may remain latent for life. Overt clinical disease occurs with waning immunity.

Pediatric adherence to daily drug regimens has not been widely assessed in Africa where majority of HIV infected children live. Using in-depth interviews of 42 HIV-infected children taking ART and/or cotrimoxazole prophylaxis, and 42 primary caregivers, at a comprehensive HIV/AIDS clinic in Uganda, we evaluated their adherence experiences for purposes of program improvement. Daily drug regimens provided by the pediatric clinic included cotrimoxazole prophylaxis as well as ART and cotrimoxazole combined. Complete disclosure of HIV status by caregivers to children and strong parental relationships were related to good adherence. Structural factors including poverty and stigma were barriers to adherence even for children who had had complete disclosure and a supportive relationship with a parent. To ensure adherence to life-extending medications, our findings underscore the need for providers to support caregivers to disclose, provide on-going support and maintain open communication with HIV-infected children taking cotrimoxazole prophylaxis and ART.