Essential Palliative Care Package for Universal Health Care (2019)

Universal health coverage (UHC) has a central place in achieving the Sustainable Development Goals (SDGs) by 2030, as it is a major target (3.8) under SDG 3 (Ensuring healthy lives and promote well-being for all at all ages). The World Health Organization defines Universal Health Coverage (UHC) as a means through which all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship. UHC brings hope of better health and protection for the world’s poorest [1].

Report from accelerating palliative care development in West Africa Interest Group meeting held during the 5th African international conference in August 2016
While remarkable palliative care interventions have been undertaken in Eastern and Southern Africa, especially in the Anglophone countries, there is still a lot to be done for the West African and Francophone countries. Countries in West Africa have had very limited or no known palliative care interventions. Integration of palliative care in policy, education, health service delivery as well as availability of palliative care medicines and technology are very limited in this region. The few palliative care capacity building and awareness raising activities in West Africa have been isolated interventions. Below are maps extracted from the Global Atlas on palliative care showing the status/levels of palliative care in the world. It is observed that most West African countries either do not have known palliative care activities or have isolated provision of palliative care.

Highlights from the field on the  impact of the palliative care and access to controlled medicines advocacy workshops held during the 5th African international conference in August 2016
In August 2016, and as Fifth African International Palliative Care Conference which took place from the 16th to 19th August 2016 at Speke Resort and Conference Centre, Munyonyo in Kampala, Uganda the Open Society Foundations (OSF), Open Society Initiative for Eastern Africa (OSIEA) and Open Society Initiative for Southern Africa (OSISA) held three important workshops, in an effort to improve access to palliative care and controlled medicines for pain relief.

Building Integrated Palliative Care Programs and Services(2017)
In 2014 all members of the World Health Assembly (WHA) approved a resolution on “strengthening of palliative care as a component of comprehensive care throughout the life course.” Uganda was one of the endorsers of this resolution and has made unique contributions to the global palliative care movement. This book is one of the important outcomes of this resolution in that it is designed specifically to assist governments and providers to build and strengthen palliative care in individual countries.

Planning and implementing palliative care services: a guide for programme managers (2016)
This is a practical manual on how to plan and implement palliative care services, integrated into existing health-care services, at national or subnational level. It has been designed primarily for health programme managers at national, provincial, or district level, whether they are responsible for noncommunicable diseases, infectious disease programmes, health services, or other technical areas where palliative care is important.

Policy Brief (2016)

A high burden of complex symptoms and concerns among ambulatory patients diagnosed with cancer, diabetes, chronic respiratory and cardiovascular diseases.A case study of two countries in Southern Africa

Key findings
The three palliative-care-related problems with the highest intensity were: shared feelings (not at all/not very often); help and advice (none/very little); and worry (most/all the time). The most prevalent physical symptoms across the range of diseases being considered were pain and lack of energy. Cough and difficulty sleeping were common in patients with CRD, while dry mouth, numbness, difficulty sleeping and hunger affected diabetic patients. Weight loss was most common in cancer patients. Worry was the most common psychological symptom, reported across the range of patients, although feeling irritable was more common in cancer patients. Qualitative data also revealed the economic burden of NCDs from the patient’s perspective. Costs related to transport and medication were a common theme.

Prevalence and severity of palliative care problems among patients with cancer, diabetes, chronic respiratory and cardiovascular diseases (2016)

There is a growing recognition in Africa of the importance of addressing non-communicable diseases (NCDs) and advancing palliative care service provision for these patient groups. However, international funding in response to the AIDS epidemic has arguably focused palliative care delivery away from patients with non-HIV diagnoses, such as NCDs.

A starting point in addressing the lack of access to adequate palliative care for patients with an NCD diagnosis is an assessment of the physical, social, psychological and spiritual symptom burden experienced by patients with an active, life-limiting NCD diagnosis. Minimal work has been undertaken to investigate this area in sub-Saharan Africa. This study aimed to contribute to the burgeoning NCD global agenda by conducting an exploratory study of the palliative care-related problems of patients diagnosed with one of the four most prevalent NCDs in the region.

Review of the status of palliative care in ten Southern African countries: A briefing paper(2016) 

Africa is characterised by a significant burden of communicable and non-communicable diseases, especially in sub-Saharan Africa, the relative distribution of which is projected to shift by 2030.1  Despite positive advances over the last decade, including an increased number of service providers,2-4 provision of palliative care on the continent remains inconsistent, largely still provided from isolated centres with restricted geographic and population coverage rather than meaningfully integrated into healthcare structures. This work was supported by the Open Society Initiative for Southern Africa 

Review of the status of palliative care in ten southern African countries(2016)

Several studies have been published reporting the status of palliative care in different countries in Africa, but none on the comparative status of the discipline in Southern Africa.  This report provides a summary of the current situation. The aim of this project was to collect up-to-date information on the degree of palliative care development in a number of targeted countries to address existing information deficits and establish development needs in each country to influence the progress of palliative care in the region. This work was supported by the Open Society Initiative for Southern Africa 

A review of national opioid estimation procedures and supply chain mechanisms in three African countries: Swaziland, Mozambique and Zimbabwe (2015)

Opioids are indispensable medicines in the management of moderate to strong pain. According to the Worldwide Hospice Palliative Care Alliance (WHPCA), around three-quarters of adults who need palliative care are in low- and middle-income countries where many African countries sit. The highest rates of people living with HIV and AIDS who need palliative care are also said to be in Africa. The WHPCA further reports that half of the children with palliative care needs are in Africa. According to the International Narcotics Control Board (INCB), four-fifths of the world’s population (most of which resides in developing countries) do not have access to strong analgesia. The INCB also states that knowledge and attitudes towards controlled medicines, as well as restrictive national policies on such medicines, all affect opioid access and availability.

The knowledge, attitudes and practices of personnel in relation to opioid use in Swaziland, Mozambique and Zimbabwe, as well as the relevant national policies of those countries, had not previously been systematically assessed. This 2014 review comprised such an assessment.

Final Evaluation Report for the Integrate Palliative Care Project (2015)

In April 2012, the UK Department for International Development approved a three-year project through the Tropical Health Education Trust's (THET) Health Partnerships multi-country partnership scheme to support the programme for strengthening palliative care integration into national health systems in four African countries (Kenya, Rwanda, Uganda and Zambia). The grant was awarded to the Global Health Academy at the University of Edinburgh (UoE), who work in conjunction with the African Palliative Care Association (APCA), and Makerere University Palliative Care Unit (MPCU). This report highlights lessons and best practices identified through the final project evaluation.

This project was supported by the Tropical Health & Education Trust (THET) as part of the Health Partnership Scheme, which is funded by the UK Department for International Development (DFID).

Clinical placement guidelines (2015)

French version here

This guide describes steps to conduct clinical placements in palliative care in an effort to expand palliative care education and training activities. It can serve as a resource for all stakeholders (i.e. national palliative care associations, public facilities and other organisations) interested in hosting clinical placements as a way to increase the number of palliative care professionals in Africa and can be adapted by African governments to their local contexts. 

This Guide has been developed by Global Partners in Care in partnership with APCA and other stakeholders.

Palliative Care factsheets for media houses in Uganda (2015)

These factsheets were developed in collaboration with journalists from various media houses in Uganda with the aim of ensuring Ugandan journalists accurately collect and report on palliative care as a human rights issue. The factsheets, adaptable to other African countries, are a resource to ensure that media houses share accurate and standardised information regarding palliative care by answering frequently asked questions on palliative care, with simple and easy to understand language.

This resource is available in English and has been developed in partnership with the Open Society Initiative for Eastern Africa.

Monitoring and Evaluation Framework (2014)

This framework can act as a roadmap for palliative care institutions and programme leaders, educators, trainers as well as government departments, that are involved with education and training in palliative care. It is designed as a tool for giving guidance to ensure that education and training interventions are properly implemented, monitored and evaluated. The framework ensures that any deviation can be noted and corrected early and that best practices and outstanding achievements inform future plans for palliative care education and training.

This resource is available in English and has been developed in partnership with the Diana, Princess of Wales Memorial Fund.

PEPFAR Public Health Evaluation - Care and Support

The aim of the evaluation was to evaluate how PEPFAR care and support programme components and costs are related to health outcomes (Phase 2). 

Effective methods of teaching palliative care (2014)

French version here

For education to be competency-based and effective, appropriate training methodologies have to be used to support the learner to have the appropriate knowledge and to translate this knowledge into skills and competencies. Such education and training should lead to a change in attitudes, beliefs and values, thus making the palliative care graduate able to do their job very effectively. To that end, APCA has developed this new resource, which is a guide to effective teaching methodologies in palliative care, targeting educators and trainers across Africa. 

This resource is available in English and has been developed in partnership with the Diana, Princess of Wales Memorial Fund.

Palliative Care for Women Living with HIV and Cervical Cancer (2013)

The information in this booklet is intended to help women living with Human Immunodeficiency Virus (HIV) as well as cancer of the cervix, their families and others in the community who support them. Individual situations might require specific information other than what is provided here but this document provides a good start towards understanding the role of palliative care for women living with HIV (WLHIV) and cervical cancer, their families and caregivers and health professionals.

Palliative care for women living with HIV (2013)

The information in this booklet is intended to help women living with Human Immunodeficiency Virus (HIV) and others in the community who support them. Individual situations might require specific information other than what is provided here. This document provides a good start towards understanding the role of palliative care for women living with HIV (WLHIV), their families, caregivers and health professionals.

A framework of core competencies for palliative care providers in Africa (2012)

To guide the provision of quality palliative care services across the African region, the African Palliative Care Association (APCA)has developed a framework of core palliative care competencies that can be used by service providers, educators and other stake holders to guide programmes development. These competencies also provide useful guidance when designing and implementing targeted and effective education programmes in palliative care, aimed at producing highly competent care providers. This resource has been developed in partnership with AIDSTAR-One.

Palliative Care Core Curriculum (2012)

To contribute to the availability of basic knowledge and skills for the provision of palliative care in the African region, the African Palliative Care Association (APCA) has developed a competency-based core curriculum framework for use in introductory training on palliative care. The curriculum incorporates theoretical, practical, mentorship and supervision components that are critical to the effective application of knowledge in practice. This resource has been developed in partnership with AIDSTAR-On

Guidelines for using the APCA African Children’s Palliative Outcome Scale (2012)

French version here

Despite the significant need for children’s palliative care in Africa, its development has been slow and only a few countries have established children palliative care programmes, with South Africa presently being the only country with a national network of services. In a continent where access to health care is often limited, and palliative care services for children are few, the most effective way to reach children is to integrate children’s palliative care into existing services for children, hospitals, clinics and community organisations, and to build competence through integrating children’s palliative care training into the undergraduate and post-graduate courses of all health care professionals. This integration, however, needs to ensure that there is recognition that children are not ‘little adults’, and that they have specific developmental, psychological, spiritual and clinical needs that must be
addressed.

Measuring quality of care for children is a complex issue and while validated tools exist to assess pain, there is an absence of culturally appropriate, relevant and rigorously validated measurement tools to assess the quality of care in children. These much needed instruments should be easy to use in resource-poor health and care settings where staff members are often overworked and patients are often very unwell.

 APCA Standards for Providing Quality Palliative Care across Africa(2011)

They cover all aspects of palliative care based on primary, intermediary and specialist levels of service delivery.  Five principles are covered: organisational development,; holistic care provision; children's palliative care; education & training,; and research & management of information. This resource has been developed in partnership with Elton John AIDS Foundation.

Guidelines for the Use of the APCA African Palliative Outcome Scale (POS)(2011)

This guide provides a simple tool for measuring care outcomes for patients receiving palliative care.  This guide walks you through the steps of using the tool, and how to analyse and use the data for improvement of patient care.  Development of a children's version of the tool is underway. This resource has been developed in partnership with AIDSTAR-One.

Successful Advocacy for Palliative Care: A Toolkit (2011)

A guide for champions of palliative care across Africa, packed with advice for working with policy makers, the media and the public, to win support for palliative care provision.  It provides useful frameworks for engaging governments to prioritise palliative care as an approach for health systems strengthening. This resource has been developed in partnership with DFID and Help the Hospices

Beating Pain: A Pocket Guide for Pain Management in Africa (2010)

A guide which targets clinicians to improve their knowledge & skills in managing pain in an African clinical setting.  It pays special attention to children's needs. It is accompanied by a  self-directed e-learning guide which supports ongoing education.  A popular resource for training clinicians on pain management. This resource has been developed in partnership with AIDSTAR-One.

Guidelines for Ensuring Patient Access to, and Safe Management of, Controlled Medicines (2010)

These guidelines cover essential regulatory and administrative measures needed to achieve the essential balance for safely managing opioid medicines and access to patients.  They allow policy makers, service providers and drug regulatory bodies to navigate the supply chain for class A drugs. This resource has been developed in partnership with True Colours Trust.

English

Assessment of Legal Needs for Patients and Palliative Care Providers: A Case Study on Uganda (2010)

The successful practice of palliative medicine requires basic knowledge of its medico-legal aspects. The term ‘human rights’ refers to rights and freedoms to which all human beings are inherently entitled. Both palliative care and human rights are based on principles of the dignity of the individual and the principles of universality and non-discrimination. For clinicians and other personnel involved in palliative care, this therefore means that access to palliative care is a human right (Gwyther, Brennan et al. 2009). 

Palliative care : A Handbook of Palliative Care in Africa (2010)

Targeting the general population, including busy managers and administrators, to introduce them to palliative care.  This comprehensive manual contains essential information on palliative care provision in the African context and includes children's palliative care.  A useful resource for palliative care service planning. This resource has been developed in partnership with AIDSTAR-One.

Using Opioids to Manage Pain: A Pocket Guide for Health Professionals in Africa (2010)

A succinct guide to opioids for medical practitioners, this includes compelling justification for their use, myths about opioids, pain evaluation and how to use opioids to manage different levels of pain. This resource has been developed in partnership with True Colours Trust.

English