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Palliative Care Development in Africa: Lessons From Uganda and Kenya
Abstract
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.
... Palliative care groups have the crucial task of supporting and teaching associates (Peters et al., 2012). There are some asset challenges when considering conveying instruction in Liberia: accessibility of instructors, the effect on associations of time away for students for vis-à-vis meetings, travel distances, coordination, and cost (Fraser et al., 2018b). The World Health Organization suggested in 2004 that legislatures remember palliative care when preparing educational plans (Downing et al., 2015). ...
... The challenges of informal education include the lack of training for palliative care providers and the requirement of formal acknowledgment of specific PC training (Fraser et al., 2018b). The importance of palliative care education and training among health workers has also been perceived as improving. ...
... Notwithstanding this effort to enhance palliative care education and training, few trained palliative care providers are still in Liberia. The shortfall in palliative care education could be the lack of subsidizing expert palliative care and hierarchical limitations related to insufficiently qualified teachers (Bush, 2012;Fraser et al., 2018b). In the reported studies, work demands were a common cause of stress. ...
... Yet, estimates suggest that only 5% of people in Africa in need of palliative care are able to receive it (Downing et al., 2015). Furthermore, past research on palliative care in Africa has often focused on countries with relatively well-developed programs such A c c e p t e d M a n u s c r i p t as Uganda, Kenya, and South Africa (Downing et al., 2015;Drenth et al., 2018;Fraser et al., 2017;Grant et al., 2017), with less of a focus on West African, Francophone countries such as Senegal where palliative care is less-developed (Afolabi et al., 2021;Hamdi et al., 2018;Rhee et al., 2018b). ...
... Furthermore, scholars have noted gaps in research on palliative care in sub-Saharan Africa (Afolabi et al., 2021;Fraser et al., 2017;Hamdi et al., 2018;Harding et al., 2013;Harding & Higginson, 2005). In fact, Fraser and colleagues (2017) concluded in their review of palliative care in Uganda and Kenya that research is the most neglected area for informing clinical interventions, and a recent synthesis of current research evidence and gaps highlighted many information needs, most acute in northern and West Africa (African Palliative Care Association, n.d.a). ...
... Past research on the development of palliative care in sub-Saharan Africa has primarily documented its expansion in countries with more extensive programs, such as Uganda, Kenya, and South Africa (Downing et al., 2015;Drenth et al., 2018;Fraser et al., 2017;Ntizimira, et al., 2014). Less common are reports on the state of palliative care in Francophone countries in West Africa (Human Rights Watch, 2015). ...
Background and Objectives
Palliative care (PC) is a specialty medical service that aims to address the bio-psycho-social-spiritual needs of patients with serious illnesses and their care partners. Despite the value of PC, its expansion in sub-Saharan Africa has been uneven and particularly underdeveloped in Senegal due to variability in access to training resources and funding. This study sought to understand the current landscape of PC services in Senegal and the barriers and opportunities in its growth.
Research Design and Methods
Semi-structured interviews were conducted with six PC clinicians, four caregivers of people with serious illnesses, one driver for a PC service, and one public health professor, all native to Senegal. Questions addressed their experience delivering or receiving PC, perceptions of barriers to implementation and access, and recommendations for additional resources and initiatives. Interviews were translated and transcribed from French into English. Transcripts were qualitatively coded for concepts during open and focused coding to identify themes.
Results
Five themes were identified: 1) the current landscape of PC, 2) barriers to implementing PC, 3) strategies and philosophies in care, 4) unique features of Senegalese culture, and 5) the future of PC.
Discussion and Implications
Our findings demonstrate that PC in Senegal remains an under-resourced and underutilized specialty medical service, but work is being done by personally committed clinicians. Results can inform PC expansion by highlighting important cultural factors influencing care in Senegal, as well as the need to expand training opportunities for clinicians, increase education of other medical providers and the public about the nature of PC, integrate PC into the healthcare system, and expand research to evaluate the impact of these resources. PC has the potential to be an important force for improving the quality of life for Senegalese patients and their care partners.
... Although access to palliative care remains limited in many parts of Africa [7], there may be important lessons to be learned from countries in this region where progress has been made in its development and integration into health care [7,8]. One such country is Malawi, a sub-Saharan country, with a population of more than nineteen million people [9]. ...
... In the 2015 Quality of Death (QOD) Index, Malawi was ranked 66th of 80 countries in the quality of palliative care [20]. This rank is only slightly lower than that of Kenya, a country that is considered to be a leader in palliative care development in Africa [8]. Since the publication of the QOD Index, Malawi has been recognized as having achieved advanced integration of palliative care services into mainstream health care provision [21], making it the only low-income country in the world to achieve this categorisation [22]. ...
... This scoping review showed that Malawi has made substantial progress in the development of palliative care along the WHO Public Health Model pillars. There are strong similarities between the strategies used in Malawi to develop palliative care and those used in Kenya and Uganda, two other leaders in palliative care development in Africa [8]. As in Uganda and Kenya, Malawi has included palliative care in the curricula of healthcare professionals. ...
Background
Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates.
Methods
A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi.
Results
114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified.
Conclusions
Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.
... 1,6 Globally, the integration of palliative care into the mainstream health service provision and national health policies has been recognised as an essential foundation for expanding palliative care and improving access to all in need. 1,5,7 A review of five African Countries indicated that palliative care is well incorporated into national health policies and relevant guidelines. [7][8][9] Ethiopia is ranked as the second most advanced country in Africa in palliative care policy development, mainly because it is incorporated into the country's health policies and guidelines. ...
... 1,5,7 A review of five African Countries indicated that palliative care is well incorporated into national health policies and relevant guidelines. [7][8][9] Ethiopia is ranked as the second most advanced country in Africa in palliative care policy development, mainly because it is incorporated into the country's health policies and guidelines. 10,11 Thus Ethiopian policy approach is consistent with the 2014 resolution of the World Health Assembly that suggested palliative integration into all national health policies and guidelines. ...
... However, evidence from Uganda suggests that integrating palliative care into the healthcare system, and embedding the activities and costs in the national healthcare budget is an essential first step to ensuring sustainability and meeting growing community needs. 7 Accordingly, for Ethiopia to achieve the national goal of expanding palliative care to 50% of healthcare facilities, there is a need to prioritise palliative care and ensure the programme is fully funded. 13 ...
Background
Ethiopia has a national palliative care guideline, and palliative care is explicitly recognised in the country’s healthcare policy and health sector transformation plans. However, palliative care is not fully delivered in the regional public hospitals and primary health care units.
Objective
This study explores perceived policy barriers to deliver palliative care services in rural and regional healthcare settings, which primary healthcare units largely serve.
Design
Face-to-face interviews were conducted in a rural region of Ethiopia.
Methods
Forty-two participants were recruited from a variety of health settings including primary, secondary and tertiary levels across the region. Interviews were conducted with policymakers from the regional health bureau, pharmacists, medical doctors, health officers (clinical officers) and nurses, including chief nursing officers in leadership roles at all levels of healthcare institutions. Data analysed using thematic analysis.
Results
Participants described several barriers related to healthcare policy, including lack of government priority and focus on palliative care; lack of health professionals’ awareness of the national palliative care plans and guidelines; and lack of palliative care integration into the existing healthcare system and the national budget. Participants remarked that palliative care services in the region were mainly limited to HIV patients, often managed with external support and, hence unsustainable.
Conclusions
Policy priority and focus is a fundamental component for the provision of palliative care because lack of focus and support from the government have led to inadequate access to palliative care for all in need. Hence, as participants suggested, palliative care should be integrated into all healthcare levels, particularly into the primary health care units and the health extension programme, to facilitate health extension workers to support millions living in rural areas.
... 7 Sub-Saharan Africa (SSA) is particularly affected with the highest disability adjusted life years (DALYs) lost due to injuries. 8 In addition, the burden of cancer in SSA is expected to increase by 400% by 2050, 9 with a resultant increase in the demand for palliative care and essential opioid analgesics. There is therefore a strong need for adequate management of acute, perioperative, and chronic pain in SSA. ...
... High levels of concern were expressed about the availability of OTC medicine containing codeine in pharmacies (84.9%) and on the internet (71.3%). 9 Fraser 2017 Uganda, Kenya Literature review Review published data on developmental 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. ...
... 69 Our scoping review also identified 15 articles that addressed specific programs and initiatives implemented by national authorities in various countries that have successfully increased access to essential opioids. 9,[38][39][40]44,47,56,59,60,63,66,67,70,72,85 Examples of such programs include Kenya's integration of palliative care into the public healthcare system through the Kenya Hospices and Palliative Care Association (KEHPCA) since 2007, the establishment of Hospice Africa Uganda (HAU) and its continued expansion and development, and the participation of Sierra Leone in the International Pain Policy Fellowship (IPPF) in 2006. Several countries have successfully increased access to essential opioids through increased local production and manufacturing of these medicines, including Uganda and Tanzania. ...
Background:
Management of acute, post-operative, and chronic pain requires access to and availability of opioids. While often oversupplied in high-income countries, significant shortages exist in low- and middle-income countries. We conducted a scoping review on availability and usage of opioids in Sub-Saharan Africa (SSA).
Methods:
The five-stage approach of Arksey and O'Malley (2005) was used. MEDLINE via PubMed, EMBASE, and SCOPUS were search and results categorized into themes: 1) Local/regional availability and supply, 2) Consumption patterns, 3) Legislation and policy, 4) Costs and financing, 5) Knowledge and cultural beliefs, and 6) Education and training.
Results:
6923 studies were identified from which 69 (1%) met inclusion criteria. Five key findings were: 1) Significant shortages exist, especially in rural areas, 2) Non-opioid analgesics commonly used as first-line acute pain management, 3) Barriers to market entry and bureaucratic processes prevent local production, 4) Significant knowledge gaps/myths exist amongst healthcare practitioners on opioid use, and 5) Continuous education and short courses will be critical.
Conclusions:
Major challenges significantly limit availability and utilization of essential opioids in SSA. Reforms needed to upscale training and education, increase uptake by professionals, and increase market entry.
... stigmas that prevent palliative care education from being made available (Fraser et al., 2017;Iida et al., 2021;Martins Pereira et al., 2011). In addition, the African Palliative Care Association has developed an e-learning model for individual growth and development, a core palliative care curriculum, and a core competency framework for palliative care providers across Africa (Frey et al., 2014). ...
... A shortage of skilled palliative care providers and a desire for formal education recognition of palliative care training were among the challenges in palliative care education (Fraser et al., 2017). Palliative care education has grown in the region since establishing the African Palliative Care Association in 2002 (Fraser et al., 2017). ...
... A shortage of skilled palliative care providers and a desire for formal education recognition of palliative care training were among the challenges in palliative care education (Fraser et al., 2017). Palliative care education has grown in the region since establishing the African Palliative Care Association in 2002 (Fraser et al., 2017). However, palliative care expertise is often lacking due to a lack of knowledge and understanding of palliative training and a scarcity of education (Amery et al., 2010). ...
Background:
Palliative care is an integral approach to enhancing patients' overall quality of life by taking into account their entire lives and addressing any suffering they may be experiencing. Thus, palliative care education and training should be advanced. However, palliative care training and education in Liberia have just started, and their development warrants further investigation.
Objective:
This research aimed to explore the state of palliative care education in Liberia and highlight its barriers and challenges.
Methods:
A descriptive qualitative exploratory study design was adopted in this study. Semi-structured interviews were conducted with ten male lecturers and four female nurses to gain in-depth insight into their perspectives on palliative care education. Thematic analysis with NVivo 12 plus was used for data analysis.
Results:
Four themes emerged from the data: 1) the need for palliative education (lack of healthcare professionals, government support, regular workshops, integration, and interprofessional education on palliative care), 2) palliative care barriers (lack of curriculum implementation, lack of experience, lack of government actions, and poor infrastructures), 3) the level of student knowledge (senior and junior level, same educational level, and regular teaching materials), and 4) the roles of health care professionals (attention on palliative care, providing education on pain, and public awareness).
Conclusion:
The study findings may serve as input to develop palliative care education and training in Liberia. The identified gaps must be filled, and critical barriers must be overcome if the area of palliative care needs to be advanced. However, the comprehensive knowledge gathered in this study can be used by nurses, lecturers, and multidisciplinary teams to achieve the effectiveness of palliative care for patients.
... The Economist Intelligence Unit, 2015). The setting of clear and appropriate guidelines and standards is necessary for the provision of PC services, improved access to quality PC for all citizens, and mitigating barriers (Fraser et al., 2017;Maetens et al., 2019;Stjernsward et al., 2007). Lack of guidelines has been recognised as a barrier ...
... Funding and resource-allocation models are required to effectively integrate PC into the HCS (Ddungu, 2011;Fraser et al., 2017;The Economist Intelligence Unit, 2015) and the sustainable provision of high-quality care (Groeneveld et al., 2017). ...
... Supportive policies (strategies, guidelines, and standards) backed by adequate funding are in need of a useful integrated PC into the HCS(Ddungu, 2011;Fraser et al., 2017; ...
ABSTRACT
Background
Due to a transitional demographic change in population growth globally and an increase in life expectancy, the need for palliative care (PC) has increased, and this approach is urgently required for adoption and integration into healthcare systems (HCSs). The integration of PC services into mainstream HCSs and national policies has been identified as a core foundation for PC development. Despite the significant benefits of PC and the successful introduction of PC services in many countries worldwide, there is so much more to be done in low- and middle-income countries (LMICs), where these services are still largely inaccessible or unavailable. There are no PC services provided in Palestine - a country that experiences a significant increase in cancer diagnosis, population density, economic and financial shortages, drug shortages, and fragmented HCS. The unavailability of PC services in most LMICs, including Palestine, seems incongruous and unacceptable, given the importance of PC services. The unavailability of PC services is attributed to multiple challenges that continue to create obstacles to their availability and development. Considering that other countries have successfully developed PC for their HCS, there are lessons to be learned from them on how to integrate PC services into an existing HCS. Palestine may follow the innovations pioneered in other countries that have successfully integrated PC into their HCS. No research studies have been done focusing on the development of PC. It is apparent that high-level documents from governments or large organisations focus on the implementation and evaluation of PC strategies and models.
Aim and objectives
The objective of this doctoral research thesis is to explore the factors and needs associated with the development of a PC programme in the Palestinian HCS from different key stakeholders’ perceptions. Based on the WHO Public Health PC Model and the socioecological, this doctoral thesis is accomplished through three separate specific studies. Study One aimed to identify the unmet service needs of patients with advanced cancer, with the following five objectives: 1) to determine the prevalence of unmet supportive care needs of patients with advanced cancer; 2) to determine the level of emotional/psychological distress, pain, and other symptoms of patients with advanced cancer; 3) to assess the quality of life (QOL) and spiritual well-being of patients with advanced cancer; 4) to assess the sociodemographic and clinical variables that influence unmet needs; and 5) to examine the association between unmet needs and pain, symptoms, QOL, and the spiritual well-being of patients with advanced cancer.
Study Two aimed to assess PC knowledge, attitude, educational needs and HCS-related issues from the perspective of physicians and nurses, with the following six objectives: 1) to assess the physicians’ and nurses’ knowledge of PC; 2) to explore physicians’ and nurses’ attitudes about end-of-life-care and care of the dying; 3) to assess the needs for PC educational programmes from the perspective of physicians and nurses; 4) to ascertain how far PC services are available in hospitals from physicians’ and nurses’ perspectives; 5) to identify the key barriers to the provision of PC into the HCS from the perspective of physicians and nurses, and 6) to determine the factors that influence their knowledge and attitudes toward PC and care of the dying.
Study Three aimed to explore the perspectives of decision- and policy-makers on the provision of PC services, with the following five objectives: 1) to understand the extent to which PC has been identified as a priority from policymakers' perspectives; 2) to discuss with policymakers existing and new policies (strategies, plans, resources) that support the integration of PC into the structure of national HCSs; 3) to explore policymakers’ perspectives about policies/work being done regarding strengthening human resources, such as training and education; 4) to identify which essential medicines for pain and symptom management are available in the HCS, their cost, and prescribing related-issues from policymakers' point of view; and 5) to identify the challenges and facilitators to the provision of PC from policymakers' perspective. The findings of these three studies will serve as a point for a discussion on how to move forward in the provision of a PC programme into the HCS of LMICs (Palestine).
Methods
A multi-method research design was employed in this doctoral research study to fulfil the overall study aim through three specific studies. The first two studies adopted a quantitative approach (survey), while the third study adopted a qualitative approach (interviews). In Study One, a hospital-based cross-sectional quantitative design was applied on a convenience sample of 379 patients aged 18 or above who had been diagnosed with advanced-stage cancer. Participants were recruited from two hospitals in the Gaza Strip (Al- Shifa Hospital and the European Gaza Hospital), which provide cancer care services to adult patients. A modified Supportive Care Framework for Cancer Care (SCNF) was adopted to guide the study's design and the selection of the outcome variables. The unmet needs of patients were assessed using the Arabic version of the short form of the Supportive Care Needs Survey (SCNS-SF34). Other instruments were utilised to examine their distress [The Arabic version of the Distress Thermometer (DT)], anxiety and depression [The Arabic version of the Hospital Anxiety and Depression Scale (HADS)], physical symptoms [The Arabic Questionnaire for Symptom Assessment (AQSA)], QOL [The Arabic version of the Functional Assessment of Cancer Therapy (FACT-G)], and spirituality [The Arabic version of the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale (FACIT-Sp)].
In Study Two, a cross-sectional quantitative study design was also applied on a convenience sample of 169 professionals working in medical and oncology departments at one of the abovementioned two hospitals, where cancer patients are more likely to be treated, and follow-up care is provided. The Palliative Care Knowledge Test (PCKT), Bradley attitude questionnaire of end-of-life care, Frommelt Attitudes Towards Care of the Dying (FATCOD Form B), and PC Needs Assessment instrument were utilised for data collection. The WHO steps (forward translation, expert panel Back-translation, pre-testing, and final version) were adopted to translate and adapt all study instruments into Arabic-the mother tongue of study participants. Overall, all instruments' item-level content validity index and scale-level content validity index showed a high content validity. The Cronbach’s α coefficient for all instruments was also acceptable.
In Study Three, a descriptive, exploratory qualitative design was employed on a purposive sample of 12 decision and policymakers. Participants were identified as having a policy-making role in the HCS and were responsible for making executive and legislative decisions about matters related to services (including PC). These policymakers had prior experience, either clinical and/or managerial positions in health services developments. Face-to-face, semi-structured interviews were employed to collect the data.
The Statistical Package for the Social Science (SPSS) software version 25 was used to enter and analyse data of the first two studies. Missing data were replaced with multiple imputations. Descriptive statistics were utilized to summarise the personal characteristics of the participants as well as all instruments and their domains. A generalised linear regression analysis was employed to test the relationship between the variables. All statistical tests were two-tailed, and p values of less than 0.05 were treated as significant. A qualitative content analysis approach was adopted for analysis of the interview data of Study Three.
Results
Of the 379 advanced cancer patients recruited in Study One, 96.8% stated they had at least one ‘moderate to high’ level of unmet service needs. The most frequent unmet needs were those in the physical aspects of daily living (Mean 58.94; SD ± 20.93) and psychological (Mean 58.84; SD ± 19.49) domains. Most of the patients (91%) were physically ill and reported experiencing physical symptoms. About 86.3% had a high level of distress. Almost 90% reported signs of depression and anxiety. Although they felt that their spiritual well-being was good, their QOL was poor. Regression analyses identified that educational level, age, gender, marital status, cancer stage, cancer type, physical symptoms, depression, anxiety, distress, QOL, and spirituality were independently associated with unmet service needs.
A total of 169 healthcare professionals (137 nurses and 32 physicians) participated in Study Two. Professionals had insufficient knowledge of PC (Mean 42.8; SD±11.02), but had positive attitudes towards end-of-life-care (Mean 3.32; SD±0.38). Nurses had significantly higher scores on attitudes towards the care of dying than physicians (t= -4.980, p <0.001). A total of 75.1% of professionals would like to learn more about PC. Patients'/families’ avoidance of discussing issues around dying and a lack of training for staff related to PC were the two significant barriers in providing PC. Educational level and previous training were found to be associated significantly with knowledge and attitudes towards PC.
For Study Three, 12 decision and policymakers participated in the semi-structured interviews. The participants' ages ranged from 35 to 57 years. Most had more than 20 years of experience at the Ministry of Health. Four primary categories were identified from the interviews: 1) nature of current PC healthcare services; 2) potential benefits of PC; 3) challenges to PC provision; and 4) considerations for PC integration into the HCS. Each category had two or more subcategories. The current PC healthcare services provided to Palestinian patients with life-threatening illnesses and their families are not comprehensive and limited to symptomatic management. There is a Palestinian national strategic plan for developing PC; however, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Education and training-related challenges were frequent challenges in the GS, followed by funding allocation and medication availability.
Conclusion
Palestinian advanced cancer patients exhibited a significantly high prevalence of unmet needs. Increasing unmet needs have contributed negatively to patients' physical and psychological well-being, and QOL. The high prevalence supports the argument that there is a need to develop a PC programme within the HCS, which would likely help enhance the care provided in the future. High unmet supportive care needs are attributed to insufficient PC knowledge and training of HCPs. Integration of formal and informal education on PC within care services and health curricula is a priority. Educational and training programmes should be comprehensive, covering PC's basic and advanced principles. The findings also help policymakers to build and implement the PC programme in the Palestinian HCS. Although PC is clearly stated in the Palestinian national strategic plan, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Developing policies and plan to align with national laws could help enhance health services for patients and their families and resolve several challenges. Integration of PC into Palestinian universities’ educational curricula as an obligatory course and establishing advanced degree programmes in PC to overcome the shortage of PC specialists is required. The Palestinian government should collaborate with national and international partners to overcome the challenges of PC provision and implement PC into the Palestinian HCS.
... Other countries may have solutions to this problem, as seen in studies reporting on palliative care budgets being tied to the national health policies in Uganda and Kenya (Fraser et al. 2017;Kamonyo 2018). The consequences of limited budgets and a low government focus toward palliative care included a lack of palliative care skilled nurses; limited infrastructure; and the unavailability of equipment and pain medications, particularly morphine (Fraser et al. 2017;Kamonyo 2018;Luyirika et al. 2022) The result is that trained professionals are not practicing their theoretical knowledge where needed. ...
... Other countries may have solutions to this problem, as seen in studies reporting on palliative care budgets being tied to the national health policies in Uganda and Kenya (Fraser et al. 2017;Kamonyo 2018). The consequences of limited budgets and a low government focus toward palliative care included a lack of palliative care skilled nurses; limited infrastructure; and the unavailability of equipment and pain medications, particularly morphine (Fraser et al. 2017;Kamonyo 2018;Luyirika et al. 2022) The result is that trained professionals are not practicing their theoretical knowledge where needed. Callaway et al. (2018) suggest that national health policies and including palliative care and pain relief are priority areas for all health policies. ...
Objectives:
This study aims to measure and explore the barriers to translating theoretical knowledge of palliative care into clinical practice.
Methods:
A mixed-method study, combining a cross-sectional survey and key interviews was conducted. The quantitative data were obtained from 173 nurses and the key interviews were conducted with 42 health professionals drawn from multiple settings. For quantitative data analysis, Statistical Package for the Social Sciences software were conducted, and a thematic analysis supported with NVivo software were used for analyzing qualitative data.
Results:
Of the 220 nurses invited, 173 completed the survey (79%). Most (78%) had a bachelor's degree in nursing. Fewer than half, 69 (40%) scored 75% or more for the knowledge test; 173 (100%) scored 50% or greater for attitude; and only 32 (18.5%) scored 75% or greater for self-reported practice. While there was a small, positive correlation between palliative care attitudes and self-reported practice (r = 0.22, p = 0.003), the qualitative findings indicated that nurses had significant challenges in translating their theoretical knowledge into clinical practice. Limited clinical practice was linked to inadequate knowledge resulting from insufficient integration of palliative care content in undergraduate curricula and a lack of follow-up training. This was further exacerbated by shortages of medicine, staff, and financial resources and was linked to limited attention accorded to palliative care by the government.
Significance of results:
While the results showed the majority held positive views toward palliative care, improving palliative care practices requires, and enhancing nurses' knowledge of palliative care. This requires changing teaching methods and engaging policymakers.
... This also becomes a hindrance to palliative care implementation hence to hold end-of-life conversations. In Sub-Saharan Africa, Uganda, South Africa, and Kenya are leading in palliative care development however research is still not developed (Fraser, 2017). A South African study on end-of-life care found that participants would want their relatives to be involved in their care decision-making (De Beer & Brysiewicz ,2017). ...
The need for palliative care services has increased with the rise of patients with terminal illnesses. Unfortunately, there is a need for more research in palliative care, especially on end-of-life care. Conversations during that period present an ethical and cultural challenge in both collectivistic and individualistic societies. Worldwide, the laws regulating Do Not Resuscitate orders differ from country to country. The perceptions also vary from society to society. Studies have shown the need to involve families in this era of rising advocacy for patient-centered care. Caregivers have an essential role in decision-making and are involved in end-of-life decisions. This study aimed to describe caregivers' perceptions of Do Not Resuscitate orders. The study used a qualitative approach and phenomenological research design. It involved eighteen caregivers of patients receiving palliative care. The sampling procedure was non-probability purposive. Data was collected using in-depth interviews and analyzed using thematic analysis. Overall, two themes emerged from the findings. The first theme was a lack of awareness of the Do Not Resuscitate orders and the resuscitation techniques, and the second theme was subjective perceptions based on caregivers' beliefs and emotional responses. Caregivers need counseling, preparation, and education on Do Not Resuscitate orders and resuscitation methods to improve Do Not Resuscitate discussions. Healthcare providers need to be empowered to hold those discussions.
... Palliative care (PC) aims to improve the quality of life for patients with serious health-related suffering and progressive chronic illness and is an imperative under Universal Health Coverage [1,2]. Uganda has been a model for palliative care on the continent of Africa, with a number of underpinning drivers of its success including: integration of an educational curriculum, training healthcare providers on opioid treatment, extension of opioid prescription privileges to specialist palliative care nurses and clinical officers,and collaboration with community-based healthcare workers for implementation [3,4]. Despite this, there are still gaps between the policies that support palliative care and delivery to the patient: a 2009 needs assessment conducted in at Mulago National Specialized Hospital in Kampala, Uganda found that 46 % of inpatients had life-limiting illness, with a high burden of symptoms (70% reported pain, while 87 % reported weakness) as well as social, psychological and spiritual distress. ...
Background
Palliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care.
Objective
To evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda.
Methods
A mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes.
Results
The most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease.
Conclusions
We report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.
... It is important to understand how patients with LTC/LLCs are currently managed, what existing services are available, and the level of satisfaction with these services by the patients and their families in GCC countries. 18 That allows us to estimate the resources required, including the cost of care for LTC/LLC patients, and impact of PPC. We suggest that research on current management should be conducted in three areas: psychosocial care, symptom management, and respite care. ...
Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that cares for children with life-threatening/life-limiting illnesses and their families. PPC aims to alleviate physical, psychological, and social distress in children with life-threatening/life-limiting illnesses and their families and improve their quality of life. PPC is an essential service that should be implemented in all nations, as it is a human right. Moreover, a core value of PPC services is to alleviate children’s suffering, irrespective of cure availability. Hence, the global consensus on palliative services must be universal and include developing countries with limited resources. While PPC services are growing internationally, the GCC countries have yet to implement these valuable services in the region. This work aims to define the local base information important to facilitating the PPC program. We explored and identified the information vital for establishing a successful program, which was then categorized and mapped into subgroups. In doing so, we outline a roadmap to facilitate the smooth introduction of PPC in GCC countries to benefit the lives of children with life-limiting illnesses.
... A strong and patient-focused pharmaceutical supply chain can be created by prioritizing patient safety, investigating cutting-edge technology, and encouraging public-private partnerships. In the end, these coordinated efforts support the overriding objective of making sure that patients have trustworthy and equitable access to painkillers, especially in the face of unanticipated supply chain difficulties [23]. ...
In the context of healthcare, this essay examines the complex interactions between supply chain management, the availability of painkillers, and patient access. The availability of painkillers is a critical component of patient care since it directly affects people's quality of life, comfort, and general wellbeing. The analysis of the pharmaceutical supply chain's complexity kicks off the inquiry. The manufacture, distribution, legal and ethical frameworks, and logistical difficulties all play a part in the accessibility of painkillers. Any link in this network could be disrupted, causing shortages and impeding patients' access to necessary pain relief. The availability of painkillers is greatly influenced by regulatory requirements and compliance. The study examines how various international rules affect the pharmaceutical sector, emphasizing how regulatory measures might unintentionally protect patient safety while also causing supply chain disruptions. The need of temperature-controlled logistics and inventory management is emphasized as the logistical difficulties in the distribution of painkillers are also examined. The study examines how unequal access to healthcare infrastructure can result in disproportionate distribution of painkillers, which can have an adverse effect on patients in neglected areas. Collaboration becomes a significant enabler for providing patient-centric painkiller availability in response to these difficulties. Stakeholders from all areas of healthcare must collaborate to improve communication, develop cutting-edge technical solutions, and put sustainable practices into action in order to maintain a resilient supply chain. The article explores potential scenarios for the availability of painkillers in the future. Block chain, Internet of Things (IoT) gadgets, and personalized medicine are examples of technological advancements that have the potential to enhance supply chain transparency, traceability, and patient outcomes. Global partnerships, regulatory flexibility, and policy reforms are emphasized as crucial elements for adjusting to changing healthcare environments and quickly meeting patients' requirements. The paper highlights that ensuring patient access to pain management is not only a medical requirement but also a fundamental ethical necessity. Ethical issues underpin the entire exploration. Healthcare stakeholders are obligated to put the needs of patients first and fight for fair access to pain relief, guided by the values of beneficence, autonomy, fairness, and human dignity. An appeal for action is made in the paper's conclusion to all participants in the healthcare ecosystem. It is emphasized that crucial stages toward a patient-centric strategy include empowering patient voices, collaborative efforts, regulatory reforms, technological advances, and a dedication to sustainable practices. Stakeholders can support an environment in which compassion, equity, and the reduction of human suffering are valued in healthcare through preserving ethical norms and acknowledging the necessity of assuring painkiller availability.
... Similarly, a study conducted in Latin America indicated that one of the main barriers to opioid prescription was fear of the adverse effects on patients. 25 Similarly, physicians working in several African countries exhibited negative attitudes and fear of prescribing opioid, 8,9,[26][27][28] indicating that more evidence-based training might be needed to improve the prescribers' attitudes. The qualitative findings of the Context reflected these significant obstacles. ...
Background: Availability and accessibility of opioids are a worldwide problem. In low-resource settings, such as Ethiopia, access to opioids is either limited or nonexistent and legally restricted in health care settings. This study aimed to identify barriers for the availability and accessibility of opioids in Ethiopian rural and regional health care settings.
Methods: A mixed-method case study design was used. A total of 220 nurses from primary, secondary, and tertiary health care settings were invited to participate in a survey of knowledge and practice. For the qualitative interview, 38 participants were recruited from educational facilities, health services, and the community across a region.
Results: Barriers in availability and accessibility of opioid analgesics were expressing pain considered as a sign of weakness, lack of knowledge, side effect concerns about prescribing morphine, only doctors being authorized to prescribe morphine, lack of foreign currency to import morphine ingredients, and inequity in accessing morphine in hospitals and none in rural health care settings.
Conclusion: The findings of this study indicate that opioids, particularly morphine, were not consistently available and accessible to all patients in need. Health professionals lacked knowledge about opioids. Strengthening the existing pain-free initiatives and improving the type, dose, and supply of morphine could help reduce needless suffering and enhance access to essential pain medicines for those in need.
... The limited availability and unaffordability of opioids are the major ones which pose a significant challenges to pain management [31]. Accesses to opioids have been restricted through bureaucratic laws despite the rational and appropriate need for opioids [33,38]. Additionally, the knowledge and attitudes of the patient and the practitioners have impact on pain management [39]. ...
Introduction
Pain is unpleasant sensory and emotional experiences associated with actual and/or potential tissue damage. It is the most common and prevalent reason for emergency departments (ED) visits with prevalence over 70% in the world.
Aim of the Study
The study aimed to assess the adequacy and appropriateness of pain management at Aabet Hospital, Addis Ababa, Ethiopia.
Methods
A hospital-based prospective cross-sectional study was conducted at Aabet hospital from December 1, 2020 to March 30, 2021. Adult trauma patients having pain (at least score 1 on Numeric Rating Scale) with Glasgow Coma Scale score > 13 were eligible to participate in the study. The pain intensity was evaluated at the time of admission (o minute) and then at 60, 120, 180, and 240 minutes. The time of the first analgesics was registered. The adequacy and the appropriateness of the pain management were calculated through pain management index (PMI).
Results
Two hundred thirty-two (232) participants were included in this study of which 126 (54.3%) were admitted due to road traffic accident followed by fall 44(19%). Only 21 (9.1%) study participants received the first analgesic treatment within 30 minutes while 27(11.6%) participants had no treatment at all within 240 minutes. The mean pain intensity score at admission was 5.55 ± 2.32 and reduced to 4.09 ± 2.69. Nearly half 110 (47.4%) of the study participants were treated inadequately (PMI (-) score). There was a weak and negative correlation between PMI and time to analgesia (r = − .159, p = 0.0001). The type of analgesia used, the time to analgesia, and the degree of pain may predict 65% of the variance in PMI score (R2 = 0.65, P = .001).
Conclusion
From the results of this study, it can be concluded that acute pain in trauma patients was under and inappropriately treated.
... A local survey reported that many opioids, such as morphine, tramadol and pethidine, are easily available to the Ugandan public. 1 Further research in the grey literature revealed that in 2004, Ugandan laws on opioid prescriptions were adjusted, allowing most health workers (i.e. nurses, doctors and clinical officers) to prescribe opioids because of human resource shortages. ...
The opioid crisis continues to affect many areas worldwide, raising questions regarding prescribing indications. There is no consensus on negotiating the need for pain relief and the potential for medically prescribed opioid-related harm/addiction. These issues present an enormous educational challenge to physicians in training, particularly those whose mandate is to understand and respond to varying forms of pain. This article examines the perspectives and educational challenges faced by two psychiatry residents from different parts of the globe during the crisis. Is the educational experience of future psychiatrists sufficient to prepare them for the responsibilities that lie ahead?
... 22,23 The importance of understanding preferences and priorities of palliative care patients, family carers and healthcare workers through robust user engagement has also been highlighted. 26,27 Preliminary work undertaken in Ethiopia by the authors (2015-2017) identified a high level of interest in using technology to support palliative care by healthcare. 28 Research to date suggests mobile phone technology in Ethiopia is acceptable 18,19 and the need to develop an mHealth platform to improve palliative care services recognised. ...
Background:
Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia.
Aim:
To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia.
Design:
Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019-2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10).
Setting/participants:
Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers.
Results:
Co-design activities lead to development of the prototype 'Ayzot' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings.
Conclusion:
This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation.
... Brant JM et al. (33) summarized that some similarities exist in palliative cancer care around the world, but vast differences exist in five primary areas: 1) the epidemiology of cancer and related symptoms experienced, 2) cancer-specific integration into care, 3) palliative care education, 4) economic development of the country, and 5) cultural and religious differences that call for a tailored approach to care. While palliative care services exist in over half of the world's countries, low-to-middle-income countries (LMICs) are resource-poor and have the fewest resources and least amount of integration of palliative care, especially in remote areas; however, these programs are primarily located in highincome countries (34)(35)(36). ...
Background
Patients with glioma present with complex palliative care needs throughout their disease trajectory. A scientometric analysis is effective and widely used to summarize the most influential studies within a certain field. We present the first scientometric analysis of palliative care for patients with glioma.
Methods
Based on a Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) principle, we conducted a generalized search for articles on palliative care for glioma in the Web of Science database and evaluated the top 100 most frequently cited articles among 2,542 articles.
Results
The number of citations for the top 100 cited articles on palliative care for glioma ranged from 10 to 223. We have a narrative conclusion, as follows: most of these articles were published in oncology-specific journals (n = 53) and palliative-specific journals (n = 22). The United States, Australia, and the Netherlands were the top three countries contributing most of the articles (n = 59). Most of the research methods were quantitative analyses, qualitative analyses, and systematic reviews and meta-analyses (n = 70). In quantitative studies, 66 scales were used, and the top three scales used included the following: the Distress Thermometer, Functional Assessment of Cancer Therapy-Brain Index (FACT-Br), and Karnofsky Performance Scale (KPS). The articles were classified into six major categories based on research subjects, including patients (n = 44), caregivers (n = 16), patients and caregivers (n = 20), literature (n = 19), and healthcare providers (n = 1). Articles were classified into seven major categories based on research themes: quality of life (n = 11); end-of-life symptoms and care (n = 16); palliative and supportive care needs (n = 35); advance care planning and decision making (n = 4); psychological, social, and spiritual needs (n = 12); hospice utilization and referral (n = 3); and others (n = 19). The studies of the primary topic are correlated with the number of citations.
Conclusions
The results of the analysis indicated that patients diagnosed with glioma present a high variety of palliative care needs, including physical, psychological, social, and spiritual needs. The caregiver’s burden and needs are important as well. The proportion of quantitative analyses, qualitative analyses, and systematic reviews and meta-analyses is relatively high, but the number of randomized controlled trials (RCTs) was low. End-of-life care and supportive care needs appeared frequently. Thus, palliative care is an urgent need to be addressed in glioma management. The appropriate scales should be selected for patients with glioma and meet their palliative needs.
... 6,7 Independent of prevention and early detection efforts, palliative care remains an essential component of care providing equitable, accessible and cost-effective interventions to relieve the suffering associated with advanced cancer, with demonstrated clinical and cost-effectiveness in high-income countries (HICs). 8,9 Significant development of palliative care services in SSA has been occurring 10,11 but there remains a need for extensive expansion to align with demand. In a recent survey of palliative care provision across SSA, of the 48 responding countries, 9 have no identified hospice and palliative care services, while 12 indicated having stand-alone palliative care policies and 20 reported having a dedicated person for palliative care in the Ministry. ...
PURPOSE: The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served.
METHODS: A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries.
RESULTS: Three meta-themes include: i) Current practice in data gathering and use; ii) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care.
CONCLUSIONS: The availability and use of relevant and reliable data relating to the current provision of palliative care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.
... 27,28 Additionally, we wanted to report on our medium-length, hybrid advanced PC course as the literature often focuses on short, sensitization courses or longer fellowship programs in LMICs. 3,6,8,9 While the majority of participants in this inaugural cohort were from Chile, which is relatively wellresourced as compared to other areas of Latin America, our intent is for future courses to welcome more participants from other Latin American LMICs. With this hub and spoke model, we hope to leverage the principle of distributive justice to reach the areas of Latin America where the need for PC is greatest. ...
Context
The vast majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). In Latin America, this shortage is critical, and PC education is greatly needed.
Objectives
This study aims to assess the effects of an advanced PC diploma course in Chile through assessment of participants’ satisfaction, knowledge, behavior, and self-efficacy.
Methods
We developed and implemented a 12-day, hybrid-setting, advanced PC diploma course for Latin American clinicians and collected and analyzed pre-course, immediate post-course, and 6-month post-course quantitative and qualitative data on satisfaction, knowledge, behaviors, and self-efficacy.
Results
13 Latin American doctors participated in this advanced PC diploma course. Overall knowledge and self-efficacy increased post-course. One hundred percent of participants described the course as “very high quality” or “high quality,” described the course's teaching methods as “very easy to understand” or “easy to understand,” and ranked role-play as a “very useful” tool.
Conclusion
There is a critical shortage of PC in Latin America where PC education is greatly needed. The lessons learned from this pilot advanced PC diploma course will inform further PC educational development in Latin America. The results of our course assessments show that an advanced diploma course can increase participants’ PC knowledge, behaviors, and self-efficacy with a goal of leveraging the Train the Trainer model to increase PC educational leadership and enable training at participants’ home institutions.
... Imported powdered morphine is used to produce oral morphine of two concentrations -5 mg/ml green and 50 mg/ml red morphine. Morphine is distributed in Uganda via two suppliers -National Medical Stores (NMS) which supplies public facilities and Joint Medical Stores (JMS) which supplies private facilities [15,16]. The International Narcotics Control Board (INCB) recognizes oral morphine as a controlled substance and this means governments must license, supervise, and report to INCB the production and distribution of all morphine [17]. ...
Background
The first and most recent nationwide audit of palliative care services in Uganda was conducted in 2009. Since then, Uganda has made great strides in palliative care development, including policy, education, and services implementation. This study provides an overview of the availability of palliative care services in the country and the challenges and gaps in Uganda prior to the global COVID-19 pandemic. This lays the foundation for better understanding the challenges and changes needed to support palliative care development and access in the wake of the pandemic.
Methods
We conducted a descriptive quantitative study of secondary data on nationwide morphine distribution, collated a list of accredited facilities, and analyzed key palliative care indicators collected through the mHealth surveillance project present at a subset of accredited facilities. Descriptive statistical analysis involved non-parametric tests using SPSS, mapping geographical distribution of available palliative care services using Geographic Information Systems software, and identification of challenges from the subset of accredited facilities.
Results
There were 226 accredited palliative care facilities across Uganda’s 135 districts in 2020. Thirty districts lacked any accredited palliative care facility. The estimated population coverage was 88.5%. The majority (68.1%) of accredited facilities were public, and private facilities received slightly more pain-relieving morphine. There was an alternating trend in the volumes of morphine delivered to public and private facilities. More than a third of the patients were diagnosed with non-communicable diseases, highlighting their significance alongside cancer and HIV/AIDS as conditions requiring palliative care. Palliative care accredited facilities offered six types of services: outreach, home visits, psychosocial, legal, bereavement, and spiritual support, but only for an average of 7 months a year due to lack of facilitation and transportation.
Conclusion
Palliative care in Uganda developed in quality, volume, and geographic coverage since 2009. The shift in palliative care patients’ primary diagnosis from HIV/AIDS to non-communicable diseases marks an important epidemiologic transition. Although accredited facilities are present in most administrative districts, more research is needed to evaluate the actual accessibility of these services. The existing services, both private and public, are limited by the amount of pain-relieving morphine, financial and transport resources. More quality data collected on key palliative care indicators is needed into geographical accessibility of palliative care services, morphine availability trends, and patient diagnoses in order to improve the provision of palliative care in Uganda.
... Five African countries, including Uganda, South Africa, Kenya, Tanzania, and Rwanda, integrate palliative care into medical professionals' curricula (Ndlovu et al., 2021). And two (Uganda and South Africa) recognize palliative care as a research subject (Fraser et al., 2018a;Rawlinson et al., 2014a). Funding and resources for PC education remain a low priority for a country like Liberia, as successful implementation of PC requires considering local resources and customs and corporate education initiatives to train medical professionals and volunteers. ...
Palliative care education is still in its infancy in some countries, including Liberia and Indonesia. The palliative care education resources for health care professionals in Liberia and Indonesia have not been emerging into the tutorial curriculum for advancement. The purpose of this review was to identify the availability of palliative care education and factors that influences palliative care education in Liberia and Indonesia. In this study, the researcher performed a literature review of articles found in Scopus, PubMed, Google Scholar, and Science Direct, published until December 2021.And then, the eligible studies investigating the need for palliative care education and training in Liberia and Indonesia were included in the study. The quality of the studies was assessed using a critical appraisal tool from the Joanna Briggs Institute, and PRISMA was used to analyze the finding data. And for the results after a comprehensive review, this review included fourteen eligible papers. After intensive study, the paper concluded that three unique common factors affect palliative care education in developing countries. Those factors included poor infrastructure, lack of governmental support, and the unavailability of a palliative care curriculum. Likewise, those articles show the slow development of PC education in Liberia. This literature review shows the lack of palliative care education in Liberia and Indonesia. As identified, there is a gap in palliative care education and training that needs to be answered. Therefore, there is a need to invest inhuman resources and palliative care education resources because of its slow Improvement.
(PDF) The Need for Palliative Care Education and Training in Liberia and Indonesia: A Literature Review. Available from: https://www.researchgate.net/publication/359708180_The_Need_for_Palliative_Care_Education_and_Training_in_Liberia_and_Indonesia_A_Literature_Review [accessed May 02 2022].
... This emphasizes the need to effectively move this research-based knowledge to palliative care actions across healthcare services and especially outside those specialized in palliative care [2]. This can be realized by the practices of integrating a palliative approach to the care provided [8], and based on current research this is repeatedly argued for [9] and facilitated in several continents and countries [10] but found challenging [11,12]. Evidence from current research especially supports such integration earlier on for patients [13,14] in contrast to the more common practice of applying a palliative approach mostly for people who are dying [15]. ...
Objectives
Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area.
Methods
A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles).
Results
Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs.
Conclusion
Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.
... Pertama, India telah membuktikan dirinya mampu mengembangkan sistem perawatan paliatif yang efektif, berbiaya rendah, dan perawatan di rumah, dan saat ini masuk dalam kategori 3b (perawatan paliatif terintegrasi pada kesehatan umum) berdasarkan pemetaan global 7 . Kedua, Uganda juga telah diidentifikasi sebagai satu-satunya negara berpenghasilan rendah di dunia dengan perawatan paliatif terintegrasi penuh dan bertindak sebagai role-model dalam pengembangan perawatan paliatif di Afrika 3,8 . ...
India dan Uganda adalah negara berkembang dengan tantangan dan potensi sumber daya yang mirip dengan Indonesia dalam kaitannya dengan upaya pengembangan perawatan paliatif. Namun, akhirnya kedua negara ini mampu mengatasi hambatan tersebut dan membuktikan bahwa perawatan paliatif sekarang tersedia dan dapat diakses oleh masyarakat. Studi ini bertujuan untuk mengeksplorasi layanan perawatan paliatif yang telah diimplementasikan di kedua negara tersebut, kemudian mengidentifikasi strategi yang digunakan yang mungkin dapat diadopsi untuk mendukung praktik perawatan paliatif berbasis komunitas (Community-based Palliative Care) di negara berkembang lainnya termasuk Indonesia. Metode dengan peninjauan cepat (rapid review) terhadap lima database elektronik dilakukan selama periode delapan minggu pada bulan April-Juni 2018. Penelitian yang telah dilakukan terkait praktik perawatan paliatif di India dan Uganda yang diterbitkan dalam bahasa Inggris dari tahun 2000 hingga 2018 adalah kriteria inklusinya. Semua judul dan abstrak (n = 542) ditinjau relevansinya, dan lima belas artikel yang relevan telah teridentifikasi. Perawatan paliatif berbasis komunitas di India dan Uganda diprakarsai oleh The Pain and Palliative Care Society (PPCS), dan Hospice Uganda (HU). Kolaborasi antara Non-goventmental Organisations (NGOs), pemerintah daerah, WHO, dan organisasi potensial lainnya telah diinisiasi untuk membantu memberikan pelatihan perawatan paliatif, peraturan dan kebijakan, serta memastikan ketersediaan morfin. Relawan komunitas juga dilatih untuk memberi dukungan kepada pasien dengan penyakit kronis dan keluarganya di masyarakat, terutama di daerah pedesaan, dengan kemampuan mengidentifikasi masalah, memberikan dukungan non-medis, dan bertindak sebagai 'jembatan' antara pasien dan profesional perawatan kesehatan. Media lokal juga dimanfaatkan untuk membantu meningkatkan kesadaran masyarakat yang lebih luas. Perkembangan perawatan paliatif berbasis komunitas di India dan Uganda dan strategi yang digunakan telah teridentifikasi. Oleh karena itu, beberapa rekomendasi telah diuraikan untuk mempromosikan pengembangan perawatan paliatif berbasis komunitas di Indonesia. Saran untuk peneliti selanjutnya adalah pentingnya mengeksplorasi bagaimana manajemen finansial yang efektif dilakukan pada praktik perawatan paliatif berbasis komunitas di negara berkembang lainnya dengan memaksimalkan peran relawan. Kata Kunci: Perawatan Paliatif; komunitas; relawan; perawatan di rumah; penyakit terminal; AbstractIndia and Uganda are developing countries with similar barriers and potential resources with Indonesia in relations to palliative care provision. However, they were finally able to tackle the barriers and prove that palliative care is now available and accessible in their communities. This study aims to explore the palliative care services that have been implemented in these two countries, and then to identify strategies used that might be needed in supporting community-based palliative care (CBPC) practices in other developing countries including Indonesia. A rapid review of five electronic databases was undertaken over an eight-week period in April-June 2018. Prior studies of palliative care practices in India and Uganda published in English from 2000 to 2018 were included. All titles and abstracts (n=542) were reviewed for relevance, and fifteen articles were identified. The CBPC in India and Uganda were initiated by the Pain and Palliative Care Society, and Hospice Uganda respectively. The collaborations between these NGOs, local governments, WHO, and other potential organizations have been initiated to help providing palliative care trainings, regulations and policies as well as ensuring availability of free morphine. The Community volunteers have been trained to support chronically ill patients and their families in society, particularly in rural areas, by identifying their issues, providing non-medical support, and acting as a ‘bridge’ between the patients and health care professionals. Local media was also utilized to help raising awareness of wider population. The development of CBPC in India and Uganda and the strategies used have been identified. Considering these strategies, some recommendations have been outlined to promote the development of community-based palliative care in local areas in Indonesia. It is recommended for the next researcher to explore funding management in the practice of community based palliative care by optimizing the role of volunteers.Keywords: Palliative care; community; volunteer; home care; terminal illness
... 97,98 Additionally, the growth of palliative care and hospice have created services to assist patients in meeting psychosocial needs toward the end of life. 99,100 Finally, patient navigation programs have been introduced recently in a few settings, 101-107 although most focus on screening and early diagnosis. Proposed Recommendations to Support the Role of Nurses in Psychosocial Care of Patients With Cancer in Africa ...
Psychosocial care is considered an important component of quality cancer care. Individuals treated for cancer can experience biologic or physical, emotional, spiritual, and practical consequences (eg, financial), which have an impact on their quality of living. With the establishment of cancer centers in Africa, there is growing advocacy regarding the need for psychosocial care, given the level of unmet supportive care needs and high emotional distress reported for patients. Nurses are in an ideal position to provide psychosocial care to patients with cancer and their families but must possess relevant knowledge and skills to do so. Across Africa, nurses are challenged in gaining the necessary education for psychosocial cancer care as programs vary in the amount of psychosocial content offered. This perspective article presents competencies regarding psychosocial care for nurses caring for patients with cancer in Africa. The competencies were adapted by expert consensus from existing evidenced-based competencies for oncology nurses. They are offered as a potential basis for educational program planning and curriculum development for cancer nursing in Africa. Recommendations are offered regarding use of these competencies by nursing and cancer program leaders to enhance the quality of care for African patients with cancer and their family members. The strategies emphasize building capacity of nurses to engage in effective delivery of psychosocial care for individuals with cancer and their family members.
... Additionally, while physicians are in the position to prescribe opioids in many countries, many low-to middle-income countries (LMICs) lack the critical mass of physicians and nurses are the frontline providers of palliative care. In some cases, palliative care is delivered solely by nurses who have been given prescriptive authority in their respective countries (e.g., Uganda) [9]. The role of the nurse also includes advocating for health care policies that impact the delivery of palliative care and the availability of opioids and other essential components of care, providing leadership in community palliative care formation, and in conducting palliative care research [10]. ...
Nurses are on the frontline of palliative care, and in some countries, are the only contact for patients and families facing life-threatening illness. The Oman Cancer Association in the Sultanate of Oman, in collaboration with the Middle Eastern Cancer Consortium and the Oncology Nursing Society, led a palliative care initiative over the past decade to better integrate palliative care into the health care system. Components of this initiative include integrating palliative care into the health care curricula and providing palliative care education to over 400 nurses and other health care professionals within Oman. The four-part education series includes the following courses: (1) Foundations of Palliative Care, (2) Advanced Concepts in Palliative Care, (3) Palliative Care Leadership, and (4) Palliative Care Research. Additional participants from 17 different countries in the Middle East and northern Africa also attended the training. Twenty of the trainees who were considered palliative care leaders in their countries then participated in a Train the Trainer course. This group trained the last cohort of health care professionals in Oman and then took learned concepts and strategies back to their respective countries in order to provide country-wide education and build palliative care capacity in the region. Outcomes include the development of palliative care units, quality improvement projects that improved care, and advocacy projects to increase opioid availability within some countries. The collaborative continues its work and connections through social medial, email, and virtual collaboration. Other countries can use this model to permeate palliative care within their regions.
... In addition, regulation regarding prescription, delivery and application of opioids hamper home-care of patients; professionals are required to formulate most drugs and delayed delivery causes a barrier which is not always necessary [29,36]. In other LMIC home-care including effective opioid administration, from prescription to administration, has been made possible [37,38]. ...
Background
In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.
Methods
Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan.
Results
When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional skills and expertise: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent ambiguity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not ask patients directly for their preferences. Fear of confrontation with family members and lawsuits leads healthcare workers to carry out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in the absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.
Conclusions
To improve end-of-life decision making, Colombian healthcare workers and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices.
... The studies were carried out in different countries with varying levels of development in palliative care and their health systems, 172 as well as different levels of awareness and attitudes towards palliative and end-of-life care. [173][174][175] Nineteen 35,48,70,73,81,82,85,88,89,93,96,129,139,142,156,161,165,167,170 of the included studies were carried out in the USA. ...
Background
Most deaths still take place in hospital; cost-effective commissioning of end-of-life resources is a priority. This review provides clarity on the effectiveness of hospital-based specialist palliative care.
Objectives
The objectives were to assess the effectiveness and cost-effectiveness of hospital-based specialist palliative care.
Population
Adult patients with advanced illnesses and their unpaid caregivers.
Intervention
Hospital-based specialist palliative care.
Comparators
Inpatient or outpatient hospital care without specialist palliative care input at the point of entry to the study, or community care or hospice care provided outside the hospital setting (usual care).
Primary outcomes
Patient health-related quality of life and symptom burden.
Data sources
Six databases (The Cochrane Library, MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and CareSearch), clinical trial registers, reference lists and systematic reviews were searched to August 2019.
Review methods
Two independent reviewers screened, data extracted and assessed methodological quality. Meta-analysis was carried out using RevMan (The Cochrane Collaboration, The Nordic Cochrane Centre, Copenhagen, Denmark), with separate synthesis of qualitative data.
Results
Forty-two randomised controlled trials involving 7779 participants (6678 patients and 1101 unpaid caregivers) were included. Diagnoses of participants were as follows: cancer, 21 studies; non-cancer, 14 studies; and mixed cancer and non-cancer, seven studies. Hospital-based specialist palliative care was offered in the following models: ward based (one study), inpatient consult (10 studies), outpatient (six studies), hospital at home or hospital outreach (five studies) and multiple settings that included hospital (20 studies). Meta-analyses demonstrated significant improvement favouring hospital-based specialist palliative care over usual care in patient health-related quality of life (10 studies, standardised mean difference 0.26, 95% confidence interval 0.15 to 0.37; I ² = 3%) and patient satisfaction with care (two studies, standardised mean difference 0.36, 95% confidence interval 0.14 to 0.57; I ² = 0%), a significant reduction in patient symptom burden (six studies, standardised mean difference –0.26, 95% confidence interval –0.41 to –0.12; I ² = 0%) and patient depression (eight studies, standardised mean difference –0.22, 95% confidence interval –0.34 to –0.10; I ² = 0%), and a significant increase in the chances of patients dying in their preferred place (measured by number of patients with home death) (seven studies, odds ratio 1.63, 95% confidence interval 1.23 to 2.16; I ² = 0%). There were non-significant improvements in pain (four studies, standardised mean difference –0.16, 95% confidence interval –0.33 to 0.01; I ² = 0%) and patient anxiety (five studies, mean difference –0.63, 95% confidence interval –2.22 to 0.96; I ² = 76%). Hospital-based specialist palliative care showed no evidence of causing serious harm. The evidence on mortality/survival and cost-effectiveness was inconclusive. Qualitative studies (10 studies, 322 participants) suggested that hospital-based specialist palliative care was beneficial as it ensured personalised and holistic care for patients and their families, while also fostering open communication, shared decision-making and respectful and compassionate care.
Limitation
In almost half of the included randomised controlled trials, there was palliative care involvement in the control group.
Conclusions
Hospital-based specialist palliative care may offer benefits for person-centred outcomes including health-related quality of life, symptom burden, patient depression and satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death) with little evidence of harm.
Future work
More studies are needed of populations with non-malignant diseases, different models of hospital-based specialist palliative care, and cost-effectiveness.
Study registration
This study is registered as PROSPERO CRD42017083205.
Funding
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research ; Vol. 9, No. 12. See the NIHR Journals Library website for further project information.
... In addition, regulation regarding prescription, delivery and application of opioids hamper home-care of patients; professionals are required to formulate most drugs and delayed delivery causes a barrier which is not always necessary (22,29). In other LMIC home-care including effective opioid administration, from prescription to administration, has been made possible (30,31). ...
Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.
Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan.
Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.
Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices.
Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.
... Identification and support of at-risk families was also recommended by local panels of healthcare and community representatives from a study in Mali and Uganda [46]. Palliative care programs that are integrated with community-based health and social services could also be an avenue to provide support to families on child nutrition and care [47][48][49]. ...
Background
The effect of the period before a mother’s death on child survival has been assessed in only a few studies. We conducted a comparative investigation of the effect of the timing of a mother’s death on child survival up to age five years in rural South Africa.
Methods
We used discrete time survival analysis on data from two HIV-endemic population surveillance sites (2000–2015) to estimate a child’s risk of dying before and after their mother’s death. We tested if this relationship varied between sites and by availability of antiretroviral therapy (ART). We assessed if related adults in the household altered the effect of a mother’s death on child survival.
Findings
3,618 children died from 2000–2015. The probability of a child dying began to increase in the 7–11 months prior to the mother’s death and increased markedly in the 3 months before (2000–2003 relative risk = 22.2, 95% CI = 14.2–34.6) and 3 months following her death (2000–2003 RR = 20.1; CI = 10.3–39.4). This increased risk pattern was evident at both sites. The pattern attenuated with ART availability but remained even with availability at both sites. The father and maternal grandmother in the household lowered children’s mortality risk independent of the association between timing of mother and child mortality.
Conclusions
The persistence of elevated mortality risk both before and after the mother’s death for children of different ages suggests that absence of maternal care and abrupt breastfeeding cessation might be crucial risk factors. Formative research is needed to understand the circumstances for children when a mother is very ill or dies, and behavioral and other risk factors that increase both the mother and child’s risk of dying. Identifying families when a mother is very ill and implementing training and support strategies for other members of the household are urgently needed to reduce preventable child mortality.
... Many studies have been conducted already discussing national access to PC. Rhee et al., 22 assessed the development of national PC across African countries and showed an increased development of PC services in some of these countries, however, difficulties in accessing opioids and restrictive laws are common barriers to adequate PC provision in most countries. Fraser et al., 23 compared strategies used to improve PC provision in Uganda and Kenya and showed that both countries had implemented strategies to integrate PC into their health care system and health curricula. While Seymour and Cassel 24 reviewed PC delivery in the USA and England, and they found that achieving a comprehensive public health approach in the PC required international collaboration and development of an evidence-base for effective partnership between health care professionals across all society levels. ...
Objective
This review aims at gaining a broad overview of national approaches about Palliative care (PC) implementation into health care systems in countries that have PC identified within their national policies and strategies.
Methods
Paper searching was conducted using both peer-reviewed databases and gray literature sources covering governmental reports with PC strategies from 2000 onward. Articles published in English that cited at least 1 category of the WHO’s public health PC model were included. Qualitative content analysis was used for data analysis and synthesis of findings.
Results
Thirteen reports met the inclusion criteria. Education and appropriate policies were the most frequent strategies covered by all countries included. Under education; information about training health care providers was needed for the effective introduction of a PC program. Reviewing standards of care required to deliver PC effectively, and financial support for PC service development were considered the central policies needed. Furthermore, partnerships and collaborations across the health systems as well as providing care based on patients’ needs were required for the provision of a PC program.
Conclusion
It is of the essence to learn from countries demonstrating enhanced PC practices before the implementation of a new PC program in a given country. Such practices could be used as a guide and to address barriers that may hinder the development of PC at a national level. Best practices can be achieved by focusing on educational and policy-based strategies through identifying patients’ needs, assessing general public awareness, health care providers’ knowledge and training as well as incorporating stakeholders’ perspectives.
... Despite the growing recognition that provider training is the lynchpin necessary to increase access to PC services, there remains a shortage of concrete guidance to support PC leaders in LMICs who want to design and implement PC training programs. [22][23][24] In this article, we have addressed this gap in the literature by synthesizing the experience of 2 successful regional efforts to develop and implement PC training programs in low-resource settings. We also summarized areas of best practice, which included the following: 1) fostering strategic academic partnerships; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of metrics to support program evaluation and outcomes research; and 4) designing PC training programs to meet local health system needs. ...
Individuals in low‐income and middle‐income countries (LMICs) account for approximately two‐thirds of cancer deaths worldwide, and the vast majority of these deaths occur without access to essential palliative care (PC). Although resource‐stratified guidelines are being developed that take into account the actual resources available within a given country, and several components of PC are available within health care systems, PC will never improve without a trained workforce. The design and implementation of PC provider training programs is the lynchpin for ensuring that all seriously ill patients have access to quality PC services. Building on the Breast Health Global Initiative's resource‐stratified recommendations for provider education in PC, the authors report on efforts by the Jamaica Cancer Care and Research Institute in the Caribbean and the Universidad Católica in successfully developing and implementing PC training programs in the Caribbean and Latin America, respectively. Key aspects of this approach include: 1) fostering strategic academic partnerships to bring additional expertise and support to the effort; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of feasible metrics to facilitate program evaluation and future outcomes research; and 4) designing PC training programs to meet local health system needs. The objective of this review is to provide a practical and stepwise approach for how individual palliative care leaders in low‐income and middle‐income countries can successfully develop and implement provider education programs. This approach includes: 1) fostering academic partnerships; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of metrics to make program evaluation and outcomes research possible; and 4) designing palliative care training programs to meet local health system needs.
... Independent of cancer prevention and treatment efforts in the region, palliative care remains a critical and essential component of care, with proven effectiveness and costeffectiveness in high-income countries (HICs) [7,8]. Enormous strides have been made in the development of palliative care services in SSA [9,10], but there remains a need for signi cant expansion of provision to meet demand. Across SSA, current provision of palliative care services is limited to 24 of 48 countries, up from only 5 in 2004, with fewer than 5% of people who need palliative care being able to access services in the region [10]. ...
'Routine data' describes datasets designed and developed primarily to support direct care provision, or for administrative and managerial purposes, rather than specifically for research. Routine data across all health system levels provide opportunities to inform and understand current service provision and evaluate any subsequent changes to it. Increasing rates of cancer in sub-Saharan Africa (SSA) means it is crucial to understand how existing, and future, data can help guide the provision of palliative cancer care. This chapter outlines the role of, and barriers and facilitators to, routine data collection in SSA in informing the delivery of palliative cancer care, using a case study from Uganda and discussing the utility of a key indicator minimum dataset. The chapter concludes with an overview of the likely future influence of digital health technologies and their potential for facilitating the capture, sharing and use of routine data to inform the delivery of palliative cancer care services across care settings in SSA countries.
This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.
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).
ResultsQuality 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 resultsFindings 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.
Background:
Access to internationally controlled essential medicines (ICEMs), medicines that are listed on both the World Health Organization's Essential Medicines List and one of three international drug control conventions, remains problematic in Sub-Saharan Africa (SSA). Previous reviews have focused only on specific ICEMs or ICEM-related healthcare fields, but none have focused on all ICEMs as a distinct class. This scoping review therefore aims to identify the barriers to accessing ICEMs across all relevant healthcare fields in SSA.
Methods:
A scoping review was conducted across indexing platforms Embase, PubMed, Scopus and Web of Science of studies published between January 1 2012 and February 1 2022. Articles were eligible if they mentioned barriers to accessing ICEMs and/or ICEM-related healthcare fields, if studies were conducted in SSA, or included data on an SSA country within a multi-country study. The review was guided by the Access to Medicines from a Health System Perspective framework.
Results:
The search identified 5519 articles, of which 97 met the inclusion criteria. Many barriers to access were reported and were common across the ICEMs drug class. Main barriers were: at the individual level, the lack of knowledge about ICEMs; at the health service delivery level, low availability, stockouts, affordability, long distances to health facilities, insufficient infrastructure to store and distribute ICEMs, and lack of ICEM knowledge and training among healthcare workers; at the health sector level, lack of prioritisation of ICEM-related healthcare fields by governments and subsequent insufficient budget allocation. Cross-cutting, governance-related barriers pertained to lack of proper quantification systems, cumbersome procurement processes, and strict national laws controlling ICEMs, leading to overly restrictive prescription practices.
Conclusion:
This review showed that there are a multitude of barriers to accessing ICEMs in SSA across all health system levels. Many of the barriers identified are applicable to all ICEMs, highlighting the importance of tackling barriers for this entire class of drugs together.
Purpose:
Despite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda.
Methods:
Bereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care.
Results:
Caregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [rs] = 0.45, P < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (rs = 0.42, P < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death (P = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (rs = -0.19, P = .008).
Conclusion:
End-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.
Between 40 and 80 million patients with advanced disease need access to palliative care, 78–95% of them living in low- and middle-income countries. However, palliative care development is progressing slowly and unevenly across the globe, and health-related suffering remains greatly unaddressed. The global development of palliative care requires a public health approach, capable of addressing the establishment of policies, education, availability and accessibility of pain medicines, as well as the implementation of palliative care services. Although thus far palliative care has concentrated upon provision of palliative care for adults, in recent times, the scientific community has also called to tackle the nearly total lack of palliative care provision for children. This chapter traces the history, definitions, and concepts of palliative care; describes global advances of palliative care according to the four dimensions of the World Health Organization public health strategy; and provides recent information for all regions across the world. It concludes with a section dedicated to promotion initiatives carried out by diverse international organizations.
Africa continues to be disproportionately affected by HIV/AIDS. Poor access to medical care, limited access to antiretroviral drugs, and lack of supportive care for persons who are symptomatic lead to disease progression. Community-based palliative care services are effective in providing supportive services throughout the course of the illness, but palliative care services are limited in Africa. This article presents a theoretical approach to developing community-based palliative care services to bridge this gap.
Africa faces a tremendous disease burden that will likely increase in the coming years. Accordingly, healthcare professionals in the region need training on delivering high-quality, culturally competent hospice and palliative care. Unfortunately, educational opportunities on this topic in developing countries, particularly in Africa, are limited. This chapter seeks to fill this void by discussing the differences between euthanasia, hospice, and palliative care. It also explores the differences between the multidisciplinary and interdisciplinary healthcare team and their roles in hospice and palliative care. The chapter traces the origin and evolution of hospice and palliative care as a medical speciality, global demand, service utilisation, best practices, and global epidemiology of opioid-related deaths. And it also examines the relevance of complementary and alternative medicine and clinical guidelines for fostering high-quality palliative care. Finally, the chapter cites over 100 references that an inquisitive learner seeking to go beyond the presentation here can consult for more in-depth information on any of the various topics covered.
In this final section, we summarize the different manuscripts included in his Supplement and outline the lessons learned. We also elaborate on the common educational challenges reported in the included articles and the possible recommendations for future global cancer education.
Context
The majority of people in need of palliative care (PC) in low- and middle-income countries lack access to it and suffer unnecessarily as a consequence. This unmet need is due, in part, to the lack of trained PC providers.
Objectives
This study aims to assess the effects of regional training in PC for doctors, nurses, and pharmacists in the Caribbean through assessment of participant satisfaction, anticipated course impact on participants’ clinical practice, barriers to changing practice, and perceived course impact on achievement of key PC milestones.
Methods
We created and taught a course in basic PC for clinicians from the Caribbean region and collected and analyzed post-course quantitative and qualitative data on satisfaction and expected impact.
Results
Eighty-three clinicians from 5 Caribbean countries participated in this workshop. Thirty participants completed the post-course survey. One hundred percent of these participants ranked the quality of the course as “very high quality” or “high quality.” The majority of participants anticipated changing their practice as a result of this course. Several barriers were reported, including lack of formal PC training in participants’ home countries. Results of participants’ retrospective pre- and post-course self-assessment for achievement of key PC milestones showed a statistically significant mean increase of at least 1 point on the 7-point Likert scale for each milestone.
Conclusion
Overall satisfaction with the course was high, and self-assessed competency in PC improved. These data suggest that an intensive training over several days is an effective format for increasing providers’ perceived efficacy in delivering PC.
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.
In recent years, palliative care practice has shifted toward community-based palliative care. The complex care needs of older adults and people requiring palliative care are increasing due to the increase in life expectancy. However, it remains limited in the Middle East, which has Muslim-majority populations. Various barriers to successful establishment of palliative care services in community settings were identified.
The increasing use of lasers in photodynamic therapy (PDT) for the treatment of cancer requires a better understanding of the effects of different laser parameters on the results of PDT. To minimize thermal damage and optimize healing benefits, we compared pulse, burst pulse, and continuous wave (CW) laser irradiation modes in PDT treatment of lung cancer in an in vivo animal model. Our results show that pulse and burst pulse modes, with high power density and short irradiation times relative to CW, improve the photodynamic reaction without thermal damage. In contrast, the CW irradiation mode induced thermal damage with the same radial profile as that of the laser beam and the temperature in the tissue.
Life‐limiting and life‐threatening conditions cause death or shorten expected lifespan. Systemic practice and family therapy approaches are highly relevant to people affected by such conditions because illness and death reverberate across whole systems. Systemic practice in this field focuses on the challenges presented by caregiving, transitions, trauma, loss, and grief. Therapy is informed by both medical understanding of the disease trajectory alongside knowledge of the psychosocial demands placed on the family system over the course of the illness. Research demonstrates that working proactively with families during serious illness can improve psychosocial outcomes and decrease longer‐term hospital use.
Life‐limiting and life‐threatening conditions cause death or shorten expected lifespan. Systemic practice and family therapy approaches are highly relevant to people affected by such conditions because illness and death reverberate across whole systems. Systemic practice in this field focuses on the challenges presented by caregiving, transitions, trauma, loss, and grief. Therapy is informed by both medical understanding of the disease trajectory alongside knowledge of the psychosocial demands placed on the family system over the course of the illness. Research demonstrates that working proactively with families during serious illness can improve psychosocial outcomes and decrease longer‐term hospital use.
In sub-Saharan Africa over 80 per cent of needy children are unable to access palliative care services. Since the introduction of the Convention on the Rights of the Child and the African Charter on the Rights and Welfare of Children, the three countries selected for this study, South Africa, Uganda and Kenya, have committed themselves to protect and promote the rights of children. Within the broader framework of international human rights, countries are obligated to realise a child's right to health and provide adequate health care. Yet, children living in these countries with life-threatening and life-limiting illnesses suffer from physical, psychological and emotional pain. The objective of the article is to focus on the plight of seriously ill children in sub-Saharan Africa. This includes highlighting their basic human right to paediatric palliative care and the challenges they encounter in receiving the necessary help. In examining a right to health it is understood that encapsulated within that right is the availability and access to palliative care for all who require such care. It is important for states to understand that realising universal health coverage is not possible unless existing legislative and social barriers, inadequate healthcare services and training of healthcare providers are addressed. In order to improve the monitoring and evaluation of needs and services, and remove the social, political and economic barriers, state involvement is necessary. The primary argument is that it is possible to successfully implement palliative care even in circumstances where resources are limited. The approach adopted calls for an increased understanding and the buy-in of representatives of government, civil society (international and national) and affected communities all working toward a common agenda and effectively utilising existing community resources.
Many countries around the world have a very low per capita consumption of opioid analgesics, which is probably related to absence or inadequate management of moderate and severe pain for large parts of their populations. We conducted a longitudinal observational study with opioid analgesic consumption data for all countries from 2000–2015, to assess 2015 per capita consumption data for strong opioid analgesics and to investigate the hypothesis that inequality decreased over the years 2000–2015. We based our study on the official statistics kept by the International Narcotics Control Board, built on data submitted by governments annually. Adequate consumption was defined as the average 2015 opioid analgesic consumption of the 20 most-developed countries, or above. In addition, we defined categories of moderate, low, very low and extremely low consumption, each category differing 0.5 on a logarithmic scale. Consumption was expressed as the AOC Index. The direction of inequality in consumption between different countries’ development levels through the years 2000–2015 was assessed using a mixed effects model. We found that the average consumption of the 20 most-developed countries was 256 ± 208 mg per capita (range 5.9–778) in 2015. In all, 119 countries did not have a moderate or adequate consumption of opioid analgesics. Inequality of adequacy of consumption between low- and highly-developed countries increased from 2000 to 2015. The world needs 1867 tonnes ME for treating pain with opioids analgesics at an adequate level (actual use: 365 tonnes or 19.5% of the global need). We concluded that in 2015, almost 6.5 billion people lived in countries where opioid analgesic consumption was low, very low, or extremely low.
Cancer survivorship focuses on efforts to understand and address the health care needs of people diagnosed with cancer beyond the acute diagnosis and treatment phase. To date, work in this area has been concentrated in a limited number of high-income countries and has progressed to identifying and implementing effective models of survivorship care. The situation is likely quite different in low- and middle-income countries where awareness of and ability to address issues affecting cancer survivors may be limited. Four recommendations are offered for advancing cancer survivorship care more equitably across the globe: conduct research to better understand the current state of survivorship care in low-, middle-, and high-income countries; expand the number of national cancer control plans that address cancer survivorship; develop and disseminate resource-stratified guidelines for survivorship care; and form regional partnerships to improve survivorship care similar to those formed to improve palliative care.
Breakthroughs in our global fight against cancer have been achieved. However, this progress has been unequal. In low- and middle-income countries and for specific populations in high-income settings, many of these advancements are but an aspiration and hope for the future. This review will focus on health disparities in cancer within and across countries, drawing from examples in Kenya, Brazil, and the United States. Placed in context with these examples, the authors also draw basic recommendations from several initiatives and groups that are working on the issue of global cancer disparities, including the US Institute of Medicine, the Global Task Force on Expanded Access to Cancer Care and Control in Developing Countries, and the Union for International Cancer Control. From increasing initiatives in basic resources in low-income countries to rapid learning systems in high-income countries, the authors argue that beyond ethic and equity issues, it makes economic sense to invest in global cancer control, especially in low- and middle-income countries.
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.
India is the world's largest democracy with control of opioids divided between the national and state governments. While the
global consumption of opioids has increased, the consumption has not increased at the same rate. This is the first comprehensive
study of opioid availability and accessibility for cancer patients in India. Data are reported on the availability and accessibility
of opioids for the management of cancer pain in 24 of the states that make up India and the Administrative area around Delhi.
About 1061 million of the nation's 1189 million people (89%) are covered by this survey. Without exception, opioid availability
continues to be low throughout all of India. Even when opioids are on formulary, they are often unavailable. Access is significantly
impaired by widespread over-regulation that continues to be pervasive across the nation.
The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives.
The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation.
With nearly 1.1 billion inhabitants living in more than 50 countries, Africa is the world's poorest and most socioeconomically
underdeveloped continent. Despite some advances for individual states, many African countries have very low opioid consumption
and, overall, the continent has the lowest consumption per capita of any in the world. This article presents the findings
of the first systematic study of the availability and accessibility of opioids for the management of cancer pain across the
continent. Data are reported on the availability and accessibility of opioids for the management of cancer pain in 25 of 52
countries, with 744 million of the region's 1127 million people (66%) covered by the survey. Many countries had severely restricted
formularies of opioids and only 15 of 25 had morphine available in oral IR, CR and injectable formulations. Even when opioids
are on formulary they are often unavailable, and access is significantly impaired by widespread over-regulation that is pervasive
across the region.
At the May 2014 meeting of the World Health Assembly, the assembly passed a resolution intended to reduce barriers to palliative care. T4eh resolution calls for integrating palliative care into national health services. It contains recommendation on improved availability and access to such care and calls for it to be included in national health policies and budgets. The full resolution with commentary is presented.
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.
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.
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.
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.
The nations of the Caribbean, Central America and South America form a heterogeneous region with substantial variability in
economic, social and palliative care development. Palliative care provision is at varied stages of development throughout
the region. The consumption of opioids in Latin America and the Caribbean is variable with moderate levels of consumption
by international standards (1–10 mg morphine equivalents/capita/year) observed in Argentine, Brazil, Chile, Colombia, Cuba,
Mexico, Costa Rica, Uruguay and most of the Caribbean but relatively low levels of consumption in other countries particularly
Guatemala, Honduras and Bolivia. Data for Latin American and Caribbean is reported on the availability and accessibility of
opioids for the management of cancer pain in 24 of the 33 countries surveyed. The results of this survey are relevant to 560
million of the region's 595 million people (94%). Opioid availability continues to be low throughout most of Latin America
and the Caribbean. While formularies in this region generally include all recommended morphine formulations, access is significantly
impaired by widespread over-regulation that continues to be pervasive across the region.
Background:
World Health Organization's essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians' ability to effectively manage distressing manifestations of HIV.
Aim:
To determine the availability of pain and symptom controlling drugs in East Africa within President's Emergency Plan for AIDS Relief-funded HIV health care facilities.
Design:
Directly observed quantitative health facilities' pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder.
Setting:
A stratified random sample in 120 President's Emergency Plan for AIDS Relief-funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda.
Results:
Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (χ (2) = 5.07, p = 0.024).
Conclusion:
The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.
Background:
The need for doctors who have skills in pain management and palliative medicine is greatest in low and moderate resource countries where patients most frequently present to their health care system with advanced illness and greater than 80% of the global deaths occur. While medical students trained in the United States are required to have training in palliative medicine, international medical graduates (IMGs), who have completed medical school outside North America, may not have the same exposure to palliative medicine training as U.S. physicians. The goal of this study was to evaluate whether a four-week course in palliative medicine could bring IMG attitudes, concerns, competence, and knowledge to the level of U.S. trainees.
Methods:
As part of a prospective cohort study, 21 IMGs from 14 countries participated in a four-week course in palliative medicine. Attitudes, concerns, self-reported competence, and knowledge were assessed pre-course and post-course. The course was evaluated weekly and at the end of the four-week program. The data from the IMGs was compared to data from U.S. medical students and residents using the same assessment tools.
Results:
After the course, IMGs had significantly decreased concern about ethical and legal issues in palliative medicine to the level of U.S.-trained residents and a significant increase in knowledge and self-rated competence equivalent to the level of U.S. trainees.
Conclusions:
A four-week course in palliative medicine can improve the levels of concern, knowledge and self-assessed competence in IMGs to the level of US trainees.
Aim: To describe an educational project to enhance local research capacity within Hospice Africa Uganda, a Uganda-wide community-based palliative care organization.
Background: This project emerged from a British Council Higher Education Links Scheme involving stakeholder British and Ugandan higher education institutions. The paper describes the project in relation to the remit of the British Council, the Ugandan context and the specifics of this exploratory project. The aim of the project was to build on the pre-existing local research capacity.
Findings: The lessons learnt and the participatory approach adopted for meeting the challenges of teaching/learning that emerged from this project are described in relation to the local interprofessional, organizational, socio-economic and socio-cultural contexts.
Conclusion: Local knowledge gained through participatory engagement and collaborative working within Uganda is relevant and useful for current and future UK–Ugandan higher education partnerships.
Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa.
Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviews with key informants, observations of clinical encounters and the local health and social care context, and routine data from local reports and statistics.
We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home.In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks.
Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.
Dr Anne Merriman is the founder of Hospice Africa and Hospice Africa Uganda. She is presently Director of Policy and International Programmes. Here she tells the story of how HAU was founded. Dr Richard Harding is an academic researcher working on palliative care in Sub-Saharan Africa. This paper described Dr Merriman's experience in pioneering palliative care provision. In particular it examines the steps to achieving wider availability of opioids for pain management for those with far advanced disease. Hospice Africa Uganda has been a model facility in achieving high quality clinical care embedded in a strategy of advocacy and education, using a multifaceted approach that has addressed logistical, policy and legislative barriers. Until 1990 control of severe pain in Sub-Saharan Africa was non-existent except in Zimbabwe and S Africa. Oral affordable morphine was brought to Kenya through Nairobi Hospice that year, and to Uganda through Hospice Africa Uganda in 1993. This paper offers an example of a highly effective and cost efficient model of care that has transformed the ability to humanely manage the problems of those with terminal illness, and to offer a culturally appropriate "good death". Thus it is now possible to complete the ethical circle of care in resource poor circumstances.
In clinical practice the major role of opioid drugs is the management of malignant and nonmalignant pain. The primary aim of this study is to evaluate the trend in sales of four opioid analgesic drugs (codeine, tramadol, morphine, fentanyl), from wholesalers to community pharmacies, as an indicator of opioid consumption in nine European countries in 2001, 2002 and 2003. Secondary aims are to compare: (a) the amount of each drug purchased by different countries in 2003; (b) the average price for each drug in the different countries in 2003; and (c) the total expenditure for each opioid from 2001 to 2003.
Data from the Statistical Report on drugs purchased by pharmacies was supplied by IMS Health, an internationally accepted information provider for the pharmaceutical and health care industries.
In the period 2001 2003, while the percentage increase of purchases of fentanyl and tramadol was considerable, that of morphine was the lowest in most of the nine countries. The largest consumer of codeine was the UK and of tramadol was Belgium. The consumption of morphine was the lowest reported in all the countries together and was three times lower than that of transdermal fentanyl. There was a high variability in the costs of the opioids among the different countries. In 2003, the total expenditure for fentanyl reached the highest total expenditure [corrected] followed by codeine. Morphine presents the lowest expenditure in all nine countries and over all three years.
These results open up many questions. What factors influence opioid purchasing and costs in these European countries? It would be interesting to have the answers from those people who know the actual situation in the individual countries.
Despite growing HIV and cancer prevalence in Sub-Saharan Africa, and WHO advocacy for a public health approach to palliative care provision, opioid availability is severely limited. Uganda has achieved a morphine roll-out programme in partnership with the Ministry of Health. This study aimed to evaluate that programme by identifying challenges to implementation that may inform replication.
A multi-methods protocol appraised morphine regulation, storage, prescribing, and consumption in three phases: key informant interviews throughout the opioid supply chain, and direct observation and audit of clinical practice.
Regulation had achieved its goal of preventing misuse and leakage from the supply chain. However, the Government felt that relaxation of regulation was now appropriate. Confusion and complexity in storage and authorization rules led to discontinuation of opioid pain management at the patient level and also wasted service time in trying to obtain supplies to which they were entitled. Continued neglect to prescribe among clinicians and public fear of opioids led to under prescribing, and clinical skills showed some evidence of need for improvement with respect to physical assessment and follow-up.
The Ugandan programme offers a successful model for both advocacy and Governmental support in achieving opioid roll-out across health districts. Despite initial concerns, abuse of opioids has not been evident. Further work is required to ensure that available supplies of opioids are prescribed to those in need, and that clinical standards are met. However, the programme for roll-out has proved a useful model to expand opioid availability as the first step in improving patient care, and may prove a useful template for other Sub-Saharan African countries.
Palliative care for people with chronic, life limiting, progressive conditions is a worldwide concern. Progressive illness is defined as long-term illness, that often limits daily activities and which medical interventions can control and not cure (Dowrick et al 2005). Progressive illnesses are the leading cause of death and disability (WHO 2004). Their rising incidence and prevalence creates major challenges for health and social services within individual countries and internationally (WHO 2002).
Specialized palliative care teams are increasingly providing care for the terminally ill. However, the impact of such teams on quality of life, satisfaction with care, and economic cost has not been examined systematically using detailed criteria for study quality.
To systematically review the evidence for effectiveness of specialized palliative care.
We performed a keyword search of the following databases from their inception to January 2008: MEDLINE, Ovid Healthstar, CINAHL, EMBASE, and the Cochrane Central Register of Controlled Trials.
We included all randomized controlled trials in which specialized palliative care was the intervention and for which outcomes included quality of life, satisfaction with care, or economic cost.
Data on population, intervention, outcome, methods, and methodological quality were extracted by 2 investigators using standardized criteria.
Of 396 reports of randomized controlled trials, 22 met our inclusion criteria. There was most consistent evidence for effectiveness of specialized palliative care in improvement of family satisfaction with care (7 of 10 studies favored the intervention). Only 4 of 13 studies assessing quality of life and 1 of 14 assessing symptoms showed a significant benefit of the intervention; however, most studies lacked statistical power to report conclusive results, and quality-of-life measures were not specific for terminally ill patients. There was evidence of significant cost savings of specialized palliative care in only 1 of the 7 studies that assessed this outcome. Methodological limitations were identified in all trials, including contamination of the control group, failure to account for clustering in cluster randomization studies, and substantial problems with recruitment, attrition, and adherence.
The evidence for benefit from specialized palliative care is sparse and limited by methodological shortcomings. Carefully planned trials, using a standardized palliative care intervention and measures constructed specifically for this population, are needed.
The agenda for palliative care in Africa the coming years is significant, encompassing the need to overcome government indifference and effect high-level policy change, training for its primarily volunteer cadre as well as orthodox preservice and inservice health workers (to include recruitment, training, and retention issues), improving societal and medical understanding and use of opioids for effective pain management, building effective linkages between relevant stakeholders (e.g. academics, oncologists, pediatricians, those working with the aged, etc.), and developing and utilizing a methodologically rigorous research base to inform service development, policy development, and, ultimately, maximize the quality of patients‘ lives.
Palliative care has been defined as care that is person-centered and attentive to physical symptoms and psychological, social, and existential distress in patients with severe or life-threatening illness. The identification of access to palliative care and pain treatment as a human rights issue first emerged among palliative care advocates, physicians, and lawyers in the 1990s, with a basis in the right to health and the right to be free from cruel, inhuman, and degrading treatment. Using a case study approach, we evaluate the results of a human rights-based advocacy approach on access to pain medicine and palliative care in India, Kenya, and Ukraine. In each country, human rights advocacy helped raise awareness of the issue, identify structural barriers to care, define government obligations, and contribute to the reform of laws, policies, and practices impeding the availability of palliative care services. In addition, advocacy efforts stimulated civil society engagement and high-level political leadership that fostered the implementation of human rights-based palliative care programs. Globally, access to palliative care was increasingly recognized by human rights bodies and within global health and drug policy organizations as a government obligation central to the right to health.
Palliative care should not be seen as a luxury, but as a necessary essential service. It should not be only for the few who can afford it, or for those living in better socioeconomic conditions. The Kenya Hospice and Palliative Care Association works together with its stakeholders such as the Ministry of Health, government hospitals, mission hospitals, hospices, and community-based organizations, and training institutions to ensure that there is greater awareness of and access to palliative care across the country. In the past 7 years, there has been a significant improvement in palliative care in Kenya focusing on availability, accessibility, and affordability of services through scaling up existing services as well as integrating palliative care into the public health care system. This paper briefly outlines this development while highlighting the challenges faced in the geographical context of sub-Saharan Africa.
The need for palliative care has never been greater. From being significantly present in only five African countries in 2004, palliative care is now delivered in nearly 50% of African countries; however, less than 5% of people in need receive it. In order to scale-up palliative care, we need greater knowledge about how different models of palliative care work within different health systems. A case study evaluation was undertaken in Kenya and Malawi to define the models used, contextualize them, and identify challenges, best practices and transferable lessons for scale-up. Visits were made to seven sites and, using an audit tool, data were collected from program staff, hospital staff and local stakeholders, and care observed as appropriate. Three models of palliative care service delivery were identified, which supports existing literature, i.e., specialist, district hospital level and community level. However, in looking further, findings show the major determinants for each model were a set of philosophical questions and assumptions underpinning each and influencing staff and patient decision-making, planning, and allocation of resources. The health system structure and the beliefs about palliative care determined, and were determined most by, referrals, the patient journey, the "centeredness" of the model and role definition and training. The models are also closely associated with the physical setting of services. Understanding how the services have developed because of, and indeed despite the geographical setting and the system level, provides us with a different set of indicators of program structure incorporated into the three models. The analysis of models provides pointers to future planning for palliative care.
Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
● In eastern Africa, access to palliative care is problematic; however,
Rwanda and Mozambique are developing national palliative care
policies; Kenya and Uganda have achieved a degree of integration
of palliative care into mainstream health services; and Tanzania is
achieving a significant service scale-up.
● In recent years, the volume of research publications from eastern
Africa has increased considerably. Most of that research is being
undertaken in Kenya, Uganda, Tanzania and Zambia.
● Easing the clinical workload of professionals interested in research,
increasing funding and providing mentorship and training on
research methodology will go a long way towards making
palliative care research a reality in eastern Africa.
We used to have a police escort from the airport—but that is not necessary now.” This casual remark by Donna Asiimwe Kusemererwa assistant manager of Kampala’s Joint Medical Store belies only the slightest hint of the extraordinary work that has been done over the past decade to relieve the pain and suffering of the terminally ill in Uganda. The now unnecessary police escort was for the importation of cheap powdered morphine the keystone of Uganda’s palliative care movement. The story of modern palliative care in Uganda starts with a UK physician from Liverpool Anne Merriman. She originally worked in tropical medicine in Nigeria then trained in geriatric medicine and palliative care in the UK. She was an initiator of hospice care in Singapore and worked as a physician in Nairobi Hospice Kenya. (excerpt)
Palliative care research in Africa is in its relative infancy, with dedicated financial support extremely limited. Therefore, setting research priorities to optimize use of limited resources is imperative.
To develop a prioritized research agenda for palliative care in Africa.
We used a two-stage process involving palliative care professionals and researchers: 1) generation of an initial topic list at a consultative workshop of experts and 2) prioritization of that list using a consensus development process, the nominal group technique.
Phase 1: 41 topics were generated across five groups, with several topics nominated in more than one group. Phase 2: 16 topics and three broad thematic areas were identified. The two most prioritized topics within each of the three themes were the following: Theme 1: patient, family, and volunteers-1) care outcomes and the impact of palliative care as perceived by patients and caregivers and 2) palliative care needs of children; Theme 2: health providers-1) impact of palliative care training on care and practice and 2) integration of palliative care and antiretroviral therapy services; and Theme 3: health systems-1) palliative care needs assessments at the micro-, meso-, and macro-levels and 2) integration of palliative care into health systems and educational curricula.
Consensus-based palliative care topics determined by the study can assist researchers in optimizing limited research capacities by focusing on these prioritized areas. Subsequent to the identification and publication of the research agenda, concrete steps will be undertaken by the African Palliative Care Research Network and other partners to help implement it.
Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.
Our purpose is to categorize palliative care development, country-by-country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service-an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.
Life-threatening illnesses such as HIV/AIDS, malaria, tuberculosis, and other disorders are prevalent in the developing world, including Kenya.
The aim of this project was to assist in the development of palliative care throughout Kenya by enhancing the knowledge and skill of faculty members in palliative care so they could integrate this content into existing nursing curricula.
In an effort to develop palliative care throughout the country, experts from the Kenya Hospices and Palliative Care Association and the Kenyatta National Hospital invited faculty from the End-of-Life Nursing Education Consortium with the United States to adopt the content of its training program to address the needs of nurses and other health care professionals in Kenya. This curriculum was delivered to nursing faculty from throughout Kenya during a 5-day training course that incorporated presentations, case studies, exercises, and other teaching methods.
The course participants completed daily course evaluations in which they rated each session on a scale of 0 = not helpful to 5 = very helpful. All of the sessions were rated very favorably, with scores for all sessions across the 5 days ranging from 4.57 to 4.91.
End-of-Life Nursing Education Consortium provided educational and other support to faculty teaching in nursing schools in Kenya so they could advance palliative care efforts in this country.
Nurses working in the United States can share their expertise and learn immense lessons from colleagues in developing worlds.
Hospice Uganda was established in Kampala, September 27, 1993. Since then the hospice has served over 3,000 patients with cancer, and referrals of patients with HIV/AIDS are increasing steadily. The concepts of hospice and palliative care are well accepted in Uganda, but the delivery of services has been severely constrained by limited resources. Possibilities for growth, both in service provision and education of health professionals, were improved significantly with the incorporation of palliative care objectives into the Ministry of Health 5-year strategic plan.
Uganda is the first and only African country that has made pain relief and palliative care for the chronically and terminally ill a priority in their National Health Plan. Uganda serves as a helpful model for what other countries urgently ought to do.
5
• Stjernswärd J
• Colleau S
• Ventafridda V
WHO's Pain and Palliative Care Program Past, present and future.J Pain Symptom Manage. 1996; 12: 65-72
• Abstract
• Full Text PDF
• PubMed
• Scopus (103)
• Google Scholar
, 15
• Parkin D.M
• Bray F.I
• Devesa S.S
Cancer burden in the year 2000. The global picture.European J Cancer. 2001; 37: 7-66
• Abstract
• Full Text
• Full Text PDF
• Google Scholar
To identify the palliative care needs of terminally ill people in Uganda.
Descriptive cross sectional study.
Home care programmes in and around Kampala that look after terminally ill people in their homes.
173 terminally ill patients registered with the home care programmes.
Most of the participants had either HIV/AIDS or cancer or both; 145 were aged under 50 years, and 107 were women. Three main needs were identified: the control or relief of pain and other symptoms; counselling; and financial assistance for basic needs such as food, shelter, and school fees for their children. The preferred site of care was the home, though all these people lived in urban areas with access to healthcare services within 5 km of their homes.
A "good death" in a developing country occurs when the dying person is being cared for at home, is free from pain or other distressing symptoms, feels no stigma, is at peace, and has their basic needs met without feeling dependent on others.
Control of pain and symptoms and terminal care are necessary for quality HIV and cancer care in sub-Saharan Africa. However, what constitutes feasible, accessible, and effective palliative care, and how to develop such services, remains to be resolved. Africa-specific palliative care includes components that carry resource implications. Home and community-based care has been largely successful, but community capacity and the resources and clinical supervision necessary to sustain quality care are lacking. Coverage and referrals must be primary concerns. Simple lay and professional protocols have been developed, but opioid availability remains a major constraint. Areas of good practice, and areas where further success may be achieved include: attention to community needs and capacity; explicit frameworks for service development and palliative-care integration throughout the disease course (including antiretroviral provision); further education and protocols; strengthening and dissemination of diverse referral and care systems; increasing advocacy; and funding and technical skills to build audit and quality assessment.
The need for effective palliative care service provision across Africa has never had such a high priority. By December 2005, an estimated 25.8 million people living with HIV/AIDS (64 per cent of the global disease burden) originated from this resource-constrained region.1 Moreover, cancer rates in Africa are expected to grow by 400 percent over the next 50 years.2 The World Health Organization (WHO) estimates that there are more than 0.5 million annual cancer deaths in Africa3 and that by 2020, 70 percent of new cancer cases will be in the developing world.4 For the overwhelming majority of Africans who currently endure these and other progressive, life-limiting illnesses, access to culturally appropriate holistic palliative care (that includes effective pain management) is at best limited, and at worst non-existent.5
In addition to extending the coverage of palliative care services across the continent, the Uganda-based African Palliative Care Association (APCA) was established to ensure those services attain an optimal level of quality that is cognizant of their resource-constrained operational environment. Progress achieved in the quality of care provided as part of a continuous improvement strategy must, however, be embedded in, and inform, routine service-level daily practice to be sustainable. Despite the reported need among care providers,6 measuring progress in the quality of palliative care provided in Africa is problematic in the absence of rigorously validated outcome instruments.7 The resulting dearth of empirical evidence is not peculiar to palliative care but indeed is symptomatic of a wider problem: the ‘moribund’ nature of African health research.8
Consequently, this study sought to develop and validate a simple and brief multi-dimensional outcome measure for palliative care (called the APCA African Palliative Outcome Scale [POS]) using patient-level indicators that could be used in routine clinical practice.
Hospice Africa Uganda introduced palliative medicine to Uganda in 1993 with enough funds to support a team of three clinicians for three months. Training in the medical and nursing schools was introduced in 1994. Since then, Uganda has achieved the three essential components of an effective public health strategy. It has also been the first country to have palliative care described as an essential clinical service and included in both the government's Strategic Health Plan and its HIV/AIDS National Strategic Framework (in 2000 and 2004), and to change the law to allow nurses and clinical officers who complete special training in palliative medicine at Hospice Uganda to prescribe morphine. Palliative care is spreading throughout the districts of Uganda, ensuring that morphine will be available to everyone who needs it. This is being done in collaboration with the Ministry of Health (MOH) and other organizations that collaborate in two umbrella organizations: the Palliative Care Association of Uganda and the Uganda Palliative Care Country Team. The former works "on the ground" in each district, establishing standards, collaborating, and carrying out continuing medical education in palliative care for all. The latter, chaired by the MOH, operates with the government to implement an integrated, coordinated, affordable, and culturally acceptable palliative care service throughout the country.
The quality of life of at least 100 million people would have improved--if today's knowledge of palliative care was accessible to everyone. A Public Health Strategy (PHS) offers the best approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population. For PHSs to be effective, they must be incorporated by governments into all levels of their health care systems and owned by the community. This strategy will be most effective if it involves the society through collective and social action. The World Health Organization (WHO) pioneered a PHS for integrating palliative care into a country's health care system. It included advice and guidelines to governments on priorities and how to implement both national palliative care programs and national cancer control programs where palliative care will be one of the four key pillars of comprehensive cancer control. The WHO PHS addresses 1) appropriate policies; 2) adequate drug availability; 3) education of policy makers, health care workers, and the public; and 4) implementation of palliative care services at all levels throughout the society. This approach has demonstrated that it provides an effective strategy for integrating/establishing palliative care into a country.
There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method review was conducted involving a synthesis of evidence from published and gray literature, ethnographic field visits to seven countries, qualitative interviews with 94 individuals from 14 countries, and the collation of existing public health data. Forty-seven African countries were reviewed, involving the assistance of numerous hospice and palliative care activists, including clinicians, managers, volunteers, policy makers, and staff of donor organizations. The 47 countries of Africa could be grouped into four categories: no identified hospice or palliative care activity (21 countries); capacity building activity is underway to promote hospice and palliative care delivery (11 countries); localized provision of hospice and palliative care is in place, often heavily supported by external donors (11 countries); and hospice and palliative care services are approaching some measure of integration with mainstream service providers and gaining wider policy recognition (four countries). Overall, services remain scattered and piecemeal in most African countries, and coverage is poor. Nongovernmental organizations are the predominant source of provision. Major difficulties relate to opioid availability, workforce development, and achieving sustainable critical mass. Models exist in Uganda, Kenya, South Africa, and Zimbabwe for the development of affordable, sustainable community-based hospice and palliative care services, but sensitivity is required in adopting Western models of hospice and palliative care for implementation in the African cultural context. Overall, interest in the development of hospice and palliative care in Africa has never been greater.
Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod approach, which involves the synthesis of evidence from published and grey literature, regional experts, and a task force of the European Association of Palliative Care. Development is categorized using a four-part typology constructed during a previous review of palliative care in Africa. The four categories are (1) no identified hospice-palliative care activity, (2) capacity building activity but no service, (3) localized palliative care provision, and (4) countries where palliative care activities are approaching integration with mainstream service providers. We found palliative care services in 115/234 countries. Total countries in each category are as follows: (1) no identified activity 78 (33%), (2) capacity building 41 (18%), (3) localized provision 80 (34%), and (4) approaching integration 35 (15%). The ratio of services to population among Group 4 countries ranges from 1:43,000 (in the UK) to 1:4.28 million (in Kenya); among Group 3 countries it ranges from 1:14,000 (in Gibraltar) to 1:158 million (in Pakistan). The typology differentiates levels of palliative care development across the four hemispheres and in rich and poor settings. Although half of the world's countries have a palliative care service, far more are needed before such services are generally accessible worldwide.
Hospice Africa Uganda: End-of-project evaluation of palliative care services
- A Bongiovanni
- M A Greenan
Bongiovanni A, Greenan MA: Hospice Africa Uganda: End-of-project evaluation of palliative care services. Final
Report. New York: Population Council. 2009. http://pdf.usaid.gov/pdf_docs/Pdacr191.pdf
Uganda: Ministerial statement on palliative care
- Sa Opendi
Opendi SA: Uganda: Ministerial statement on palliative care. http://www.ehospice.com/africa/Default/tabid/10701/
ArticleId/6382
Advancing the integration of palliative care in the national health system
- H Nabudere
- E Obuku
- M Lamorde
Nabudere H, Obuku E, Lamorde M: Advancing the integration of palliative care in the national health system. http://
www.academia.edu/19225311/Advancing_the_Integration_of_Palliative_Care_in_the_National_Health_System
Diploma in higher education in palliative care DipHE a franchise with Nairobi Hospice
- Nairobi Hospice
Nairobi Hospice: Diploma in higher education in palliative care DipHE a franchise with Nairobi Hospice. http://
nairobihospice.or.ke/?page_id=12384
Uganda: Current status of palliative care
- A Merriman
Merriman A: Uganda: Current status of palliative care. J Pain Symptom Manage 24:252-256, 2002
- Kenya Hospices
- Palliative Care Association
Kenya Hospices and Palliative Care Association: Annual Report, 2014. http://kehpca.org/wp-content/uploads/AnnualReport-2014_draft.pdf