The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya.

OBJECTIVES: Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. METHODS: Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). RESULTS: Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). SIGNIFICANCE OF RESULTS: Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

From disease- to people-centred pandemic management: organized communities, community-oriented primary care and health information systems.

BACKGROUND: The COVID-19 pandemic exposed the health equity gap between and within countries. Western countries were the first to receive vaccines and mortality was higher among socially deprived, minority and indigenous populations. Surprisingly, many sub-Saharan countries reported low excess mortalities. These countries share experiences with community organization and participation in health. The aim of this article was to analyse if and how this central role of people can promote a successful pandemic response. METHODS: This analysis was partly based on local and national experiences shared during an international and Latin American conference on person-and people-centred care in 2021. Additionally, excess mortality data and pandemic control-relevant data, as well as literature on the pandemic response of countries with an unexpected low excess mortality were consulted. RESULTS: Togo, Mongolia, Thailand and Kenya had a seven times lower mean excess mortality for 2020 and 2021 than the United States of America. More successful pandemic responses were observed in settings with experience in managing epidemics like Ebola and HIV, well-established community networks, a national philosophy of mutual aid, financial government assistance, more human resources for primary care and paid community health workers. DISCUSSION: Since trust in authorities and health needs vary greatly, local strategies are needed to complement national and international pandemic responses. Three key levers were identified to promote locally-tailored pandemic management: well-organized communities, community-oriented primary care, and health information systems. An organized community structure stems from a shared ethical understanding of humanity as being interconnected with each other and the environment. This structure facilitates mutual aid and participation in decision making. Community-oriented primary care includes attention for collective community health and ways to improve health from its roots. A health information system supports collective health and health equity analysis by presenting health needs stratified for social deprivation, ethnicity, and community circumstances. CONCLUSIONS: The difference in excess mortality between countries during the COVID-19 pandemic and various country experiences demonstrate the potential of the levers in promoting a more just and effective health emergency response. These same levers and strategies can promote more inclusive and socially just health systems.

RESUMEN: ANTECEDENTES: La pandemia de COVID-19 expuso la brecha de equidad en salud dentro y entre países. Los países occidentales fueron los primeros en recibir vacunas y la mortalidad fue mayor entre las poblaciones indígenas, minoritarias y socialmente desfavorecidas dentro de los países. Sorprendentemente, muchos países subsaharianos reportaron un exceso de mortalidad bajo. Estos países comparten experiencias de organización y participación comunitaria en salud. El objetivo es analizar si y cómo este papel central de las personas puede promover una respuesta exitosa a la pandemia. MéTODOS: Este análisis se basa en parte en las experiencias locales y nacionales compartidas durante una conferencia internacional y latinoamericana sobre la atención centrada en las personas y comunidades en 2021. Además, se consultó los datos de exceso de mortalidad y los datos relevantes para el control de la pandemia, así como la literatura sobre la respuesta a la pandemia de países con un exceso de mortalidad inesperadamente bajo. RESULTADOS: Togo, Mongolia, Tailandia y Kenia tuvieron un exceso de mortalidad promedio por 2020 y 2021 siete veces menor que los Estados Unidos de América. Se observaron respuestas pandémicas más exitosas en entornos con experiencia en el manejo de epidemias como el ébola y el VIH, redes comunitarias bien establecidas, una filosofía nacional de ayuda mutua, asistencia financiera del gobierno, más recursos humanos para atención primaria y trabajadores de salud comunitarios remunerados. DISCUSIóN: Dado que la confianza en autoridades y las necesidades en salud varían mucho, se necesitan estrategias locales para complementar las respuestas nacionales e internacionales a la pandemia. Se identificaron tres palancas clave para promover la gestión de pandemias adaptada localmente: comunidades bien organizadas, atención primaria orientada a la comunidad y sistemas de información de salud. Una estructura comunitaria organizada surge de una comprensión ética compartida que concibe a la humanidad interconectada entre sí y con el medio ambiente. Esta estructura facilita la ayuda mutua y la participación en la toma de decisiones. La atención primaria orientada a la comunidad incluye la atención a la salud comunitaria colectiva y las formas de mejorar la salud desde sus raíces. Un sistema de información de salud puede apoyar el análisis de la salud colectiva y la equidad en salud al presentar las necesidades de salud estratificadas por privación social, etnicidad y circunstancias de la comunidad. CONCLUSIONES: La diferencia en el exceso de mortalidad entre países durante la pandemia de COVID-19 y las experiencias de varios países, demuestran el potencial de las palancas para promover una respuesta de emergencia sanitaria más justa y eficaz. Estas mismas palancas y estrategias pueden promover sistemas de salud más inclusivos y socialmente justos.

Depressive Symptoms and Palliative Care Concerns Among Patients With Non-communicable Diseases in Two Southern African Countries.

CONTEXT: Non-communicable diseases (NCDs), associated with health-related suffering, can benefit from palliative care in resource-limited settings, where over four-fifths of these deaths occur. OBJECTIVE: To measure the prevalence of depressive symptoms, palliative care-related concerns, physical and other psychological symptoms among adult patients with NCDs in Malawi and Namibia. METHODS: This multi-center, cross-sectional study consecutively recruited outpatients from four tertiary referral hospitals. Stepwise regression analysis was used to assess factors associated with physical and psychological symptom burden. RESULTS: Among 457 participants, primary diagnosis was cancer (n=147, 32%); cardiovascular disease (CVD) (n=130, 28%), chronic respiratory disease (CRESD) (n=73, 16%) or diabetes (n=107, 23%). Over half were female (58.9%; n=269), mean age was 48 (SD=15.7). Clinically significant psychological distress was identified among cancer (57.2%), diabetes (57.0%), CRESD (45.2%) and CVD patients (43.1%), with criterion for major depression symptoms met for cancer (42.9%), diabetes (39.2%), CVD (30.0%) and CRESD (28.8%). Most severe palliative care concerns were: first sharing feelings (i.e., not at all/not very often), reported by CVD (28%), CRESD (23%), cancer (22%) and diabetes (21%) patients; second help and advice (i.e., none/very little), among cancer (28%), CVD (26%), diabetes (22%), and CRESD (16%) patients. High prevalence of moderate-to-severe pain was reported (cancer 54%, CVD 41%, CRESD 38%, diabetes 38%). Functional status, age, and presence of comorbidities were associated with physical and psychological symptom distress. CONCLUSION: Given the high burden of physical and psychosocial symptoms and symptom distress, the findings highlight the need for integrated person-centered palliative care for NCDs to optimize care outcomes.

Implementing the English health inequalities agenda: addressing challenges to person-level, cross-sectoral data linkage, access and routine use for local authority public health.

Local authorities are central to the implementation of English Integrated Care Systems' health inequalities agendas, embedding public health into population health management planning. They work with partners to deliver a range of 'health determinant' services and facilities for people in a defined geographic area. This work is substantially premised on the use of cross-sectoral data that is linked at the individual level, readily available, longitudinal and contemporaneous. However, multiple challenges exist to such data availability. This paper elaborates upon these challenges to local authority public health systems and their potential solutions.

Untapped potential of nature-based activities for mental health: need for further research.

In April 2022, the Intergovernmental Panel on Climate Change stated clearly that without immediate and deep reductions in greenhouse gas emissions, it would be impossible to limit global temperature rise to 1.5 °C above pre-industrial levels. A growing body of research shows an increasing reaction to witnessing or experiencing current climate impacts and concern regarding apparent inaction in response, manifests as negative cognitive, emotional, and behavioural responses, including eco-anxiety. This commentary contends that nature-based activities (NBAs) have a potentially important, but currently neglected, role to play in supporting those experiencing eco-anxiety. However, existing research limitations hinder their adoption in the United Kingdom's social prescribing agenda and they remain a largely untapped therapeutic resource that need to be mainstreamed into clinical and social care provision. The paper calls for investment in research that advances our understanding of the individual and community benefits of NBAs, the longevity of their impact, and their associated, comparative and opportunity costs.

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries.

BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers.

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.

Bereavement care for ethnic minority communities: A systematic review of access to, models of, outcomes from, and satisfaction with, service provision.

OBJECTIVES: To review and synthesize the existing evidence on bereavement care, within the United Kingdom (UK), for ethnic minority communities in terms of barriers and facilitators to access; models of care; outcomes from, and satisfaction with, service provision. DESIGN: A systematic review adopting a framework synthesis approach was conducted. An electronic search of the literature was undertaken in MEDLINE, Embase, PsycINFO, Social Work Abstract and CINAHL via EBSCO, Global Health, Cochrane library, the Trip database and ProQuest between 1995 and 2020. Search terms included bereavement care, ethnic minority populations and the UK setting. RESULTS: From 3,185 initial records, following screening for eligibility, and full-text review of 164 articles, seven studies were identified. There was no research literature outlining the role of family, friends and existing networks; and a real absence of evidence about outcomes and levels of satisfaction for those from an ethnic minority background who receive bereavement care. From the limited literature, the overarching theme for barriers to bereavement care was 'unfamiliarity and irregularities'. Four identified subthemes were 'lack of awareness'; 'variability in support'; 'type and format of support'; and 'culturally specific beliefs'. The overarching theme for facilitators for bereavement care was 'accessibility' with the two subthemes being 'readily available information' and 'inclusive approaches'. Three studies reported on examples of different models of care provision. CONCLUSIONS: This review reveals a stark lack of evidence about bereavement care for ethnic minority populations. In particular, understanding more about the role of family, friends and existing support systems, alongside outcomes and satisfaction will begin to develop the evidence base underpinning current provision. Direct user-representation through proactive engagement and co-design approaches may begin to determine the most appropriate models and format of bereavement care for ethnic minority communities to inform service design and delivery.

Valuing the Spiritual.

Identifying reforms that minimize US healthcare costs is imperative. This commentary explores one intervention with potential cost-saving implications that has received comparably minimal consideration: spiritual care provision. It highlights the staff and patient costing benefits of spiritual care in addressing spiritual distress and urges practical policy and research initiatives to maximize its impact.

'We weren't checked in on, nobody spoke to us': an exploratory qualitative analysis of two focus groups on the concerns of ethnic minority NHS staff during COVID-19.

OBJECTIVE: To gain exploratory insights into the multifaceted, lived experience impact of COVID-19 on a small sample of ethnic minority healthcare staff to cocreate a module of questions for follow-up online surveys on the well-being of healthcare staff during the pandemic. DESIGN: A cross-sectional design using two online focus groups among ethnic minority healthcare workers who worked in care or supportive roles in a hospital, community health or primary care setting for at least 12 months. PARTICIPANTS: Thirteen healthcare workers (11 female) aged 26-62 years from diverse ethnic minority backgrounds, 11 working in clinical roles. RESULTS: Five primary thematic domains emerged: (1) viral vulnerability, centring around perceived individual risk and vulnerability perceptions; (2) risk assessment, comprising pressures to comply, perception of a tick-box exercise and issues with risk and resource stratification; (3) interpersonal relations in the workplace, highlighting deficient consultation of ethnic minority staff, cultural insensitivity, need for support and collegiate judgement; (4) lived experience of racial inequality, consisting of job insecurity and the exacerbation of systemic racism and its emotional burden; (5) community attitudes, including public prejudice and judgement, and patient appreciation. CONCLUSIONS: Our novel study has shown ethnic minority National Health Service (NHS) staff have experienced COVID-19 in a complex, multidimensional manner. Future research with a larger sample should further examine the complexity of these experiences and should enumerate the extent to which these varied thematic experiences are shared among ethnic minority NHS workers so that more empathetic and supportive management and related occupational practices can be instituted.

Grief and Bereavement in Parents After the Death of a Child in Low- and Middle-Income Countries.

While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.

Exploring the capacity of the Somaliland healthcare system to manage female genital mutilation / cutting-related complications and prevent the medicalization of the practice: a cross-sectional study.

BACKGROUND: Female genital mutilation/cutting (FGM/C) negatively impacts the wellbeing of girls and women throughout their lifecycle. In Somalia, FGM/C prevalence is nearly universal (98%) among females aged 15-49 years, with infibulation prevalence at 77%. Whilst there is need to engage healthcare workers in the prevention and management of FGM/C, minimal information exists indicating healthcare systems' capacity to fulfil this role. This study explored factors impacting the capacity of the Somaliland healthcare system to prevent the medicalization, and manage the complications of, FGM/C. METHODS: A cross-sectional qualitative study using semi-structured key informant interviews, conducted in the Somali language, was undertaken in the Maroodi Jeex and Awdal regions of Somaliland, in rural and urban Borama and Hargeisa districts in December 2016. A total of 20 interviews were conducted with healthcare workers comprised of medical doctors, nurses, midwives and system administrators. Transcribed and translated interview data were analysed using the template analysis approach. RESULTS: Healthcare workers reported understanding the adverse impact of FGM/C on the health of girls and women. However, they faced multiple contextual challenges in their preventative and management roles at the individual level, e.g., they lacked specific formal training on the prevention and management of FGM/C complications and its medicalization; institutional level, e.g., many facilities lacked funding and equipment for effective FGM/C management; and policy level, e.g., no national policies exist on the management of FGM/C complications and against its medicalization. CONCLUSION: Healthcare systems in urban and rural Somaliland have limited capacity to prevent, diagnose and manage FGM/C. There is a need to strengthen healthcare workers' skill deficits through training and address gaps in the health system by incorporating the care of girls and women with FGM-related complications into primary healthcare services through multi-sectoral collaboration and coordination, establishing clinical guidelines for FGM/C management, providing related equipment, and enacting policies to prevent the medicalization of the practice.

Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study.

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.

Evaluation of the Quality of Dying and Death Questionnaire in Kenya.

PURPOSE: A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS: Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS: Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death (P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns (P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns (P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION: The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

A survey of mobile phone use in the provision of palliative care services in the African region and priorities for future development.

INTRODUCTION: Palliative care (PC) services in the African region need to adapt to manage rising numbers of patients with cancer or other life-limiting conditions. Mobile phone use in healthcare delivery (mHealth) is at an early stage of development for PC, but may provide new approaches to supporting patients regionally, particularly those with non-communicable diseases. METHODS: We conducted an online survey of 51 PC providers across 21 countries in the African region to identify: (i) current mHealth use in PC service delivery; (ii) potential barriers to mHealth use; and (iii) provider priorities for research development. RESULTS: mHealth approaches were reported across 71.4% of services in which respondents were based. Barriers to mHealth research include patients not having access to phones, mobile network access, and limited access to expertise and hardware required for mHealth. Research priorities were identified which included exploring ways of incorporating mHealth into patient care and ensuring access and relevance of mHealth for patients and health professionals. DISCUSSION: mHealth approaches are present across PC services in the African region, but so too are barriers to their use. Further work is required to explore how existing mHealth activities might be further developed and aligned with priority areas for PC development. Crucially, user engagement that seeks to understand the preferences and priorities of patients with PC needs, their caregivers, and those involved in the provision of PC should remain central to these efforts.

Palliative Care Development in Africa: Lessons From Uganda and Kenya.

PURPOSE: Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. METHODS: This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. RESULTS: Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. CONCLUSION: A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.

An Analysis of Palliative Care Development in Africa: A Ranking Based on Region-Specific Macroindicators.

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.

Factors Affecting Palliative Care Development in Africa: In-Country Experts' Perceptions in Seven Countries.

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.

Developing Macroindicators of Palliative Care Development in Africa: A Process with In-Country and International Experts.

BACKGROUND: Indicators specific to the African context are important to measure palliative care (PC) development accurately. OBJECTIVE: To describe the process used to develop a set of PC macroindicators for Africa. DESIGN: 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. SETTING/SUBJECTS: Sixteen country experts from 7 African countries and 14 International Committee members. RESULTS: 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. CONCLUSION: 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.