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.

Six Key Approaches in Open Society Foundations' Support for Global Palliative Care Development.

CONTEXT: Between 1998 and 2021, the Open Society Foundations (OSF) network invested around US$50 million in supporting the emerging field of palliative care worldwide, funding different approaches and interventions to advance its objective of putting palliative care on the global public health agenda. OBJECTIVE: To describe six approaches that were instrumental to the successes of Open Society Foundations' support in building the global field of palliative care. A robust discussion of lessons learnt is unfortunately not possible because Open Society Foundations did not commission a rigorous evaluation of the impacts of its investments. METHODS: This article describes these six approaches: Investing in versatile palliative care leaders at national and regional level; investing in palliative care champions within the OSF network; proactively engaging the World Health Organization (WHO) in efforts to promote palliative care; developing tools and skills to improve palliative care financing; using a human rights-based approach; and supporting self-advocacy by people with palliative care needs. RESULTS: Deep, long-term investments in national and regional champions from the palliative care community and OSF's own network built palliative care leaders with well-rounded skills, knowledge and opportunities to develop their own networks. The active engagement and involvement of the WHO in efforts to advance palliative care enhanced the credibility of palliative care as a discipline as well its champions, whereas the human rights approach resulted in more diverse strategies to overcome barriers to palliative care. The focus on palliative care financing and self-advocacy showed significant promise for impact. DISCUSSION: The approaches and strategies described helped a nascent palliative care field develop into a health service that is increasingly integrated into public health systems. Other funders and national governments can build on OSF's long term support for the palliative care field and support further integration of palliative care within public health to increase access.

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.

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.

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.

Change in multidimensional problems and quality of life over three months after HIV diagnosis: a multicentre longitudinal study in Kenya and Uganda.

BACKGROUND: Evidence on patient-reported outcomes of newly diagnosed HIV patients is scarce, and largely cross-sectional. This prospective cohort study describes the prevalence of, and changes in, patient-reported outcomes in the three months after HIV diagnosis, in 11 HIV outpatient centres in Kenya and Uganda. METHODS: Adults were recruited within 14 days of result, completing self-report measures four times at monthly intervals. Multilevel mixed-effects linear regression (quality of life continuous outcomes) and ordinal logistic regression (symptoms and concerns categorical outcomes) modelled change over time, with repeated observations grouped within individuals adjusted for demographic/clinical characteristics, and multiple imputation for missing data. RESULTS: 438 adults were enrolled and 234 (53·4%) initiated ART. Improvement was found for MOS-HIV physical health (from 46·3 [95% CI 45·1-47·3], to 53·7 [95% CI 52.8-54·6], p < 0.001), and mental health (from 46·4 [95% CI 45·5-47·3] to 54·5 [95% CI 53·7-55·4], p < 0.001). POS subscale 'interpersonal problems' improved but remained burdensome (OR = 0·91, 95% CI = 0·87-0·94, p < 0.001; 22·7% reported severe problems at final time point). The scores for the existential POS subscale (OR = 0·95, 95% CI = 0.90-1·00, p = 0.056) and physical/psychological problems POS subscale (OR = 0·97, 95% CI = 0.92-1·02, p = 0.259) did not improve. Participants who initiated ART had worsening physical/psychological (OR = 0·64, 95% CI = 0·41-0·99, p = 0·045) and interpersonal problems (OR = 0·64, 95% CI = 0·42-0·96, p = 0·033). CONCLUSION: Although some self-reported outcomes improve over time, burden of interpersonal problems remains substantial and existential concerns do not improve.

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.

Investigation of the Practices, Legislation, Supply Chain, and Regulation of Opioids for Clinical Pain Management in Southern Africa: A Multi-sectoral, Cross-National, Mixed Methods Study.

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: 1) a review of regulatory and policy documentation, 2) group interviews, and 3) 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 that 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.

Female Genital Mutilation in Kenya: are young men allies in social change programmes?

The Girl Summit held in 2014 aimed to mobilise greater effort to end Female Genital Mutilation (FGM) within a generation, building on a global movement which viewed the practice as a severe form of violence against women and girls and a violation of their rights. The UN, among others, endorse "comprehensive" strategies to end FGM, including legalistic measures, social protection and social communications. FGM is a sensitive issue and difficult to research, and rapid ethnographic methods can use existing relations of trust within social networks to explore attitudes towards predominant social norms which posit FGM as a social necessity. This study used Participatory Ethnographic Evaluation Research (PEER) to understand young men's (18-25 years) perceptions of FGM, demand for FGM among future spouses, and perceptions of efforts to end FGM in a small town in West Pokot, Kenya, where FGM is reported to be high (between 85% to 96%). Twelve PEER researchers were recruited, who conducted two interviews with their friends, generating a total of 72 narrative interviews. The majority of young men who viewed themselves as having a "modern" outlook and with aspirations to marry "educated" women were more likely not to support FGM. Our findings show that young men viewed themselves as valuable allies in ending FGM, but that voicing their opposition to the practice was often difficult. More efforts are needed by multi-stakeholders - campaigners, government and local leaders - to create an enabling environment to voice that opposition.

'Tweaking' the model for understanding and preventing maternal and neonatal morbidity and mortality in Low Income Countries: "inserting new ideas into a timeless wine skin".

BACKGROUND: Maternal and neonatal morbidity and mortality in Low Income Countries, especially in sub-Saharan Africa involves numerous interrelated causes. The three-delay model/framework was advanced to better understand the causes and associated Contextual factors. It continues to inform many aspects of programming and research on combating maternal and child morbidity and mortality in the said countries. Although this model addresses some of the core areas that can be targeted to drastically reduce maternal and neonatal morbidity and mortality, it potentially omits other critical facets especially around primary prevention, and pre- and post-hospitalization continuum of care. DISCUSSION: The final causes of Maternal and Neonatal mortality and morbidity maybe limited to a few themes largely centering on infections, preterm births, and pregnancy and childbirth related complications. However, to effectively tackle these causes of morbidity and mortality, a broad based approach is required. Some of the core issues that need to be addressed include:-i) prevention of vertically transmitted infections, intra-partum related adverse events and broad primary prevention strategies, ii) overall health care seeking behavior and delays therein, iii) quality of care at point of service delivery, and iv) post-insult treatment follow up and rehabilitation. In this article we propose a five-pronged framework that takes all the above into consideration. This frameworks further builds on the three-delay model and offers a more comprehensive approach to understanding and preventing maternal and neonatal morbidity and mortality in Low Income Countries CONCLUSION: In shaping the post 2015 agenda, the scope of engagement in maternal and newborn health need to be widened if further gains are to be realized and sustained. Our proposed five pronged approach incorporates the need for continued investment in tackling the recognized three delays, but broadens this to also address earlier aspects of primary prevention, and the need for tertiary prevention through ongoing follow up and rehabilitation. It takes into perspective the spectrum of new evidence and how it can be used to deepen overall understanding of prevention strategies for maternal and neonatal morbidity and mortality in LICS.

Provision of Palliative Care in Low- and Middle-Income Countries: Overcoming Obstacles for Effective Treatment Delivery.

Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change.

Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study.

BACKGROUND: Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities. METHODS: In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual). RESULTS: Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002). CONCLUSIONS: Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.

Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures.

BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G + Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.

A psychometric evaluation of the functional assessment of chronic illness therapy-palliative care (FACIT-Pal) scale with palliative care samples in three African countries.

CONTEXT: Although sub-Saharan Africa suffers the greatest burden of progressive illness, there are few outcome measures with adequate properties to measure needs and outcomes. OBJECTIVES: To examine the psychometric properties of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) among people receiving palliative care in three African countries. METHODS: Adult patients in South Africa, Kenya, and Uganda gave self-reported data to the core FACIT-G plus Pal subscale. Data were subjected to factor analysis, corrected item-total correlations, and Cronbach's α for full scale and subscales. RESULTS: The resulting four factors bear a strong similarity to the original Functional Assessment of Cancer Therapy-General in our sample of 461: physical symptoms, functional well-being, friends and family, and emotional well-being. Cronbach's α for the full 27-item scale was 0.90 and for the physical well-being, social/family well-being, emotional well-being, and functional well-being subscales, it was 0.83, 0.78, 0.80, and 0.87, respectively. Varimax rotation of the 19-item FACIT-Pal scale showed three clear interpretable factors. Factor 1, a sense of purpose and meaning in life; Factor 2, physical symptoms; and Factor 3, social integration. For the 19-item FACIT-Pal, Cronbach's α was 0.81, and individual corrected item-total correlations ranged from 0.24 to 0.61. Cronbach's α for the eight items comprising Factor 1 (meaning in life) was 0.83. For the other two factors, it was 0.70 (physical symptoms, six items) and 0.68 (social integration, three items). CONCLUSION: The FACIT-Pal is a reliable multidimensional scale for people with life-limiting incurable diseases in sub-Saharan Africa, and the observed factors are interpretable and clinically meaningful.

The HIV basic care package: where is it available and who receives it? Findings from a mixed methods evaluation in Kenya and Uganda.

An evidence-based basic care package (BCP) of seven interventions (Family testing, Cotrimoxazole, Condoms, Multivitamins, Access to safe water treatment, Isoniazid preventive therapy (IPT), and Insecticide-treated bednet) has been advocated to prevent infections among people with HIV in low-income settings. We examined the availability and receipt of the BCP in HIV outpatient clinics in Kenya and Uganda. A survey of 120 PEPFAR-funded facilities determined the services offered. At each of the 12 largest facilities, a longitudinal cohort of 100 patients was recruited to examine care received and health status over three months. The full BCP was offered in 14% (n = 17/120) of facilities; interventions most commonly offered were Support for family testing (87%) and Condoms (87%), and least commonly IPT (38%). Patients (n = 1335) most commonly reported receiving Cotrimoxazole (57%) and Multivitamins (36%), and least commonly IPT (4%), directly from the facility attended. The BCP (excluding Isoniazid) was received by 3% of patients directly from the facility and 24% from any location. BCP receipt was associated with using antiretroviral therapy (ART; OR 1.1 (95% CI 1.0-1.1), receipt from any location) but not with patient gender, wealth, education level or health. The BCP should be offered at more HIV care facilities, especially Isoniazid, and to more people irrespective of ART use. Coordinating local BCP suppliers could help improve availability through addressing logistical challenges or reducing costs.

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey.

BACKGROUND: End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. METHODS: Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. RESULTS: 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. CONCLUSION: This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens' preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home.