Palliative Care In Africa Research Articles

Health Care Worker Education for Palliative Care in Africa: Narrative Review.

The demand for palliative care for terminally ill patients is rising globally. This review examines the potential of health worker education to enhance palliative care in Africa. A search of PubMed yielded 32 relevant articles published in English from 2013 to 2023 focused on African countries with WHO-categorized palliative care development and health care worker training. The findings underscore the pivotal role of health care worker education in elevating palliative care standards. Targeted initiatives equip health care workers with vital skills in pain management, symptom control, and communication. The integration of palliative care into public health systems is important for the sustainability of end-of-life care for terminally ill patients in Africa and around the world.

Navigating the challenges of neuro-oncology in Africa: addressing diagnostic and treatment barriers in the region: a correspondence

Navigating the challenges of neuro-oncology in Africa: addressing diagnostic and treatment barriers in the region: a correspondence

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

Serious Illness Communication in Cancer Care in Africa: A Scoping Review of Empirical Research

PURPOSE Serious illness communication (SIC) in cancer care describes conversations between clinicians, patients, and families about prognosis and treatment decisions. Cultural context influences SIC. Researchers have studied SIC across diverse settings in Africa. We aimed to describe and synthesize the heterogeneous body of research on SIC practices, preferences, and needs in Africa to identify research and training priorities. METHODS Our search strategy identified studies that focused on SIC within cancer or palliative care in Africa. Following PRISMA guidelines, a systematic literature search was performed using PubMed, Embase, Web of Science, CINAHL, African Index Medicus, and PsycINFO, yielding 1811 unique titles. After sequential review of abstracts, full text, and cited references, 42 articles met inclusion criteria. Quantitative and qualitative data describing study characteristics, aims, methods, and findings were abstracted and analyzed using descriptive statistics and thematic analysis. Critical appraisal was performed using the Mixed Methods Appraisal Tool. RESULTS The 42 included articles were published from 1997-2021, half since 2017, representing 16 countries and all African Union regions: West (33%), East (29%), South (21%), North (12%), and Central (5%). Most study designs were qualitative (45%) or quantitative surveys (50%). Study participants included patients (35%), family caregivers (18%), doctors (18%), nurses (12%), and/or other (11%). Study aims focused on disclosure of diagnosis (27%) or prognosis (20%), breaking bad news (15%), general patient-clinician communication (12%), truth-telling (8%), shared decision-making (7%), information needs/preferences (5%), and/or advance care planning (5%). Despite diverse contexts, common themes emerged. Study authors frequently recommended communication skills training. Critical appraisal demonstrated high quality of studies overall. CONCLUSION Research on SIC in Africa has increased in recent years. Most studies have focused on information delivery by clinicians; fewer on eliciting information from patients (eg, shared decision-making, advanced care planning). Significant opportunities exist for further study and for communication skills training.

Barriers to the Provision and Utilization of Palliative Care in Africa: A Rapid Scoping Review.

Palliative care (PC) has continued to be less available, underutilized, and unintegrated in many of the healthcare systems, especially in Africa. This scoping review synthesized existing published papers on adult PC in Africa, to report the barriers to PC and to assess the methodologies used in these studies. Eight electronic databases and Google Scholar were searched to identify relevant studies published between 2005 and 2018. Overall, 42 publications (34 empirical studies and 9 reviews) that reported issues related to barriers to adult PC were selected. Three themes identified were individual-level, system-level, and relational barriers. The studies reviewed predominantly utilized cross-sectional and retrospective study design, underscoring the need for more studies employing qualitative design. Findings highlight the need for health education, training opportunities, more funding, communication, and timely referral. Future works could focus on underlying factors to these barriers and ethno-religious perspectives to PC in Africa.

COVID-19: time to rethink palliative care strategy in resource-poor settings.

COVID-19: time to rethink palliative care strategy in resource-poor settings.

\u201cFrom good hearted community members we get volunteers\u201d \u2013 an exploratory study of palliative care volunteers across Africa

BackgroundVolunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.MethodsPalliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.ResultsTwenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.ConclusionsThe findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.

Palliative Care Needs of People Living in a Newly Established Informal Settlement

Evidence-based guidance for the delivery of palliative care in Africa is rare. Identifying the palliative care needs of this community could contribute evidence to guide the services provided, and could add to the body of knowledge of palliative care in Africa. Using a retrospective chart review research method, the researchers aimed to describe the palliative care needs of people using a nurse-led palliative care service situated in a newly established, underserved, informal settlement in Tshwane, Gauteng, South Africa. A quantitative inductive content analysis method was used to analyse the data. The sample realised at 48 (n = 48). The ages of patients ranged from 21 to 78 with the median age 47. Nearly half (45.9%) of the patients were functionally illiterate. The records reflected 85 different medical diagnoses and some patients suffered more than one illness. The most common diagnosis was HIV/AIDS (54.2%). Furthermore, records revealed 379 health problems, ranging from 1 to 17 per patient, with an average of 8.1. Most problems were physical symptoms (50.3%; n = 195), while 38.8 per cent (n = 147) were psychosocial problems and 9.8 per cent (n = 37) were spiritual problems. The need for pain relief (89.6%; n = 43) was the greatest, followed by the need for emotional support. Patients suffering from various medical diagnoses used the services of the palliative care clinic. Patients’ care needs revolved around relief from total pain. Therefore, nurses should become aware of the suffering of palliative patients living in resource-poor communities, and through meticulous assessment, identify their main care needs.

Palliative care in Botswana: current state and challenges to further development.

A rising tide of cancers and other chronic diseases, alongside the ongoing HIV/AIDS epidemic, has created an increasing demand for palliative care in Africa. Yet, few African nations have established effective palliative care programs. In Botswana, the escalating HIV/AIDS crisis revealed an unmet need for holistic care, prompting efforts to expand palliative care education and policy, and target curricular and health system integration in the years that followed. Despite numerous successes, Botswana continues to face barriers to palliative care development. In this paper, we examine the country's current state of palliative care and the challenges it must still overcome. Data was collected from June to July of 2015, and includes interviews of physicians, nurses and hospice staff. Palliative care delivery in Botswana is primarily concentrated in the south, where the country's first palliative care clinic and three hospices are located. While 157 health care workers, students and lecturers received palliative care training from 2013 to 2014, 100% of participants felt that education remains a significant obstacle for palliative care expansion. Sixty-four percent commented on the need for increased palliative care understanding and awareness, while 91% noted the difficulty of achieving adequate access to pain medication. Several targets were identified that have persistently hampered efforts to advance palliative care in Botswana, including: infrastructural challenges such as access to pain medications, the strained size of the palliative care workforce, and a need for increased palliative care education and understanding. However, recent achievements in national strategy and policy offer promising avenues for moving past these historical barriers. With implementation of action plans already underway, Botswana may ultimately provide a model for successful palliative care implementation in continuing to strengthen palliative care services throughout the country.

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

ContextTo date, there is no study comparing palliative care (PC) development among African countries. ObjectivesTo analyze comparatively PC development in African countries based on region-specific indicators. MethodsData 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. ResultsSurveys 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. ConclusionUganda, 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.

ECHO palliative care in Africa (ECHO-PACA): Improving access to quality palliative care.

6545Background: There is limited access to quality Palliative Care (PC) for advanced cancer patients being treated in Sub Saharan Africa due to limited PC knowledge among health care providers in t...

Perspective on Care at the End of Life at Hospice Africa Uganda.

Since its beginning in 1993, Hospice Africa Uganda (HAU) has become a leader in palliative care in Africa. Despite this, there remains a sparsity of research elucidating the priorities of patients in their care at the end of life. This study aimed to identify those priorities in three groups: patients with life-limiting illness, their caregivers, and their healthcare providers at HAU, and thus to identify differences in what these groups find important in the last month of life. A Likert scale survey of 31 statements regarding end-of-life care was administered to 46 patients, 51 caregivers, and 25 healthcare providers at HAU in Kampala, Uganda and satellite locations. Variations in the responses of the groups were analyzed using the Kruskal-Wallis test of variance. Twelve of 31 items were significantly different, and frequency data were examined. Differences were found in categories of symptom management, future planning, and in preferred place of death. Of anxiety, pain, and shortness of breath (SOB), only control of SOB was widely agreed on as important by patients, although providers unanimously wanted to control symptoms. Many subjects in all groups found that funeral arrangements should be deferred. Most patients and caregivers felt as if dying in the hospital was preferable, whereas providers felt that home care was preferable. This study tells us that patients, caregivers, and healthcare providers often have different ideas concerning what is important in end-of-life care, differences that are unique to this population.

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

ContextFactors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. ObjectivesTo identify key factors affecting PC development in African countries from in-country PC experts' perspectives. MethodsAbout 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. ResultsEmerged 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. ConclusionThe 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 Tools for Needs Assessment for Children in Sub-Saharan Africa: The validation and Application of the PaedsQ4 and NEC Tools in the Zambian Paediatric Population

Introduction: Though significant advances have been achieved in the provision of palliative care in Africa in recent years, there is very little evidence for outcomes of effectiveness of this care. A primary reason for this dearth of evidence is the lack of appropriate and validated outcome tools Methodology: This study assessed and applied 2 research tools to assess palliative care needs in children attending University teaching hospital in Lusaka, Zambia. The study population was parents and guardians of children receiving care at the university teaching hospital. Sample size was calculated as 100. Trained research assistants approached potential participants and explained the research to them. Following informed voluntary consent the two questionnaires were administered by the research assistants. These were the Needs Evaluations questionnaire (NEQ) and the paedsQL4 questionnaires. We used Cronbach’s alpha to determine validity and factor analysis to identify relevant factors. We compared the mean difference across the three groups of patients, general paediatric patients, children with HIV, paediatric and oncology patients using ANOVA. Results: Both tools were found to be reliable for assessing palliative care needs in children (Cronbach’s alpha >0.8). Generally there were very high need gaps across all hospital wards with 15/23 items having need gap of >50%. Overall the largest need caps was in information domain. The HIV ward had least need gap with only 8/23 items having a need gap of >50%. Results from the paedsQL4 showed that there were significant mean differences across the three categories of patients in all domains of functioning with oncology patients performing worst. In physical functioning domain, the items showed that 6/7 items had significant mean differences (p<0.05). Confirmatory factors analysis showed that 2 items were loading highly on the physical functioning factor. These were running and participating in sports (0.896). In the emotional functioning domain, 2 items loaded highly on factor analysis, feeling sad (0.842 and angry (0.666). In the social functioning domain, highest loading were in 2 items, both related to making friends i.e getting along with friends (0.826) and friend wanting to be friend (0.847). In the school domain missing school to go hospital loaded highly on factor analysis (0.842) followed by difficulty paying attention in class (0.716) Conclusion: The study successfully applied two quantitative tools for assessing needs in Children. The results showed that the tools are reliable and applicable in the Zambian context. The findings indicate needs gap for child palliative care services in Zambia. Pain control remained in sub-optimal for especially for children with cancer.

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

PurposeDespite 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.MethodsThis 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.ResultsBoth 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.ConclusionA 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.

Cancer and palliative care in Africa.

Cancer and palliative care in Africa.

Best practices in developing a national palliative care policy in resource limited settings: lessons from five African countries.

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.

Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa.

BackgroundThe leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. There is a great and urgent need for children’s palliative care in Africa, whether HIV-related or not. It is often not possible for sick children and their carers to attend clinics and hospitals cannot accommodate children for long periods of time. As a result children are often cared for in their own homes where caregivers require support to provide informed and sensitive care to reduce children’s suffering. Home-care places a heavy burden on families, communities and home- and community-based care workers.MethodsThis project involved the development and pilot evaluation of a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in southern Africa. A number of research methods were used, including a cross-sectional survey of content experts using the Delphi technique, participatory action research with photo elicitation and qualitative thematic analysis.ResultsBecause the palliative care needs of these children are complex, the package focuses on delivering 9 key messages essential to improving the quality of care provided for young children. Once the key messages were developed, culturally relevant stories were constructed to enhance the understanding, retention and enactment of the messages. The various research methods used, including literature reviews, the Delphi technique and photo-elicitation ensured that the content included in the package was medically sound and culturally relevant, acceptable, feasible, and comprehensive. The end product is a home-based paediatric palliative care training and support package in English designed to help train community workers who are in a position to support families to care for very sick young children at home as well as to support families in looking after a very sick child.ConclusionA pilot study to assess the training and support package found it to be useful in delivering the key messages to caregivers. The training component was found to be feasible. It is concluded that the package offers a practical means of integrating palliative care with home-based care. Further implementation and evaluation is needed to establish its utility and impact.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0114-7) contains supplementary material, which is available to authorized users.

Out of the shadows: non-communicable diseases and palliative care in Africa

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...

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.