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Powell R.A.,African Palliative Care Association
Progress in Palliative Care

Approximately 10 million people need palliative care for life-limiting illnesses across Africa. Although noncommunicable diseases are significant sources of morbidity and mortality globally, in Sub-Saharan Africa infectious diseases constitute the major disease burden, with HIV/AIDS its primary determinant. Despite this need, and the progress made in advancing service provision, palliative care coverage on the continent remains deficient. Following the World Health Organization's enhanced public health approach, palliative care providers on the continent have used the modality of home-based care. Central to this home-based palliative care are family carers. Against a backdrop of eroding extended kinship and community structures, a result of a combination of modernization and the demographic impact of HIV/ AIDS, the normative, moral, and economic fabric that previously bound together the extended family is disentangling, rendering the assumption that, in African caring systems the capacity of the extended family to withstand crises is inexhaustible, baseless. Given the engendered nature of care provision in Africa, the primary burden of caring for the ill traditionally falls on women, especially the old and young. These family caregivers face multiple challenges, including limited knowledge and caring skills, the costs of caring, stress and burnout, care burden, the challenges and support for caregivers, and HIV-related stigma and discrimination. The article concludes by suggesting a number of ways by which familial care giving and research on the continent can be improved. © W. S. Maney & Son Ltd 2013. Source

Hogerzeil H.V.,University of Groningen | Liberman J.,be Center for Law and Cancer | Wirtz V.J.,National Health Research Institute | Kishore S.P.,Harvard University | And 4 more authors.
The Lancet

Access to medicines and vaccines to prevent and treat non-communicable diseases (NCDs) is unacceptably low worldwide. In the 2011 UN political declaration on the prevention and control of NCDs, heads of government made several commitments related to access to essential medicines, technologies, and vaccines for such diseases. 30 years of experience with policies for essential medicines and 10 years of scaling up of HIV treatment have provided the knowledge needed to address barriers to long-term effective treatment and prevention of NCDs. More medicines can be acquired within existing budgets with efficient selection, procurement, and use of generic medicines. Furthermore, low-income and middle-income countries need to increase mobilisation of domestic resources to cater for the many patients with NCDs who do not have access to treatment. Existing initiatives for HIV treatment offer useful lessons that can enhance access to pharmaceutical management of NCDs and improve adherence to long-term treatment of chronic illness; policy makers should also address unacceptable inequities in access to controlled opioid analgesics. In addition to off-patent medicines, governments can promote access to new and future on-patent medicinal products through coherent and equitable health and trade policies, particularly those for intellectual property. Frequent conflicts of interest need to be identified and managed, and indicators and targets for access to NCD medicines should be used to monitor progress. Only with these approaches can a difference be made to the lives of hundreds of millions of current and future patients with NCDs. Source

O'Brien M.,Global Access to Pain Relief Initiative | Mwangi-Powell F.,African Palliative Care Association | Adewole I.F.,University of Ibadan | Adewole I.F.,African Organisation for Research and Training in Cancer | And 7 more authors.
The Lancet Oncology

WHO expects the burden of cancer in sub-Saharan Africa to grow rapidly in coming years and for incidence to exceed 1 million per year by 2030. As a result of late presentation to health facilities and little access to diagnostic technology, roughly 80% of cases are in terminal stages at the time of diagnosis, and a large proportion of patients have moderate to severe pain that needs treatment with opioid analgesics. However, consumption of opioid analgesics in the region is low and data suggest that at least 88% of cancer deaths with moderate to severe pain are untreated. Access to essential drugs for pain relief is limited by legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of health-care providers, procurement difficulties, weak health systems, and concerns about diversion, addiction, and misuse. However, recent initiatives characterised by cooperation between national governments and local and international non-governmental organisations are improving access to pain relief. Efforts underway in Uganda, Kenya, and Nigeria provide examples of challenges faced and innovative approaches adopted and form the basis of a proposed framework to improve access to pain relief for patients with cancer across the region. © 2013 Elsevier Ltd. Source

Mwangi-Powell F.,African Palliative Care Association
Progress in Palliative Care

In Africa, the need for palliative care is immense, but largely unmet. The World Health Organization (WHO) estimates that approximately 9.67 million people are in need of palliative care across the continent. © W.S. Maney & Son Ltd 2012. Source

Agency: Cordis | Branch: FP7 | Program: CSA-CA | Phase: HEALTH-2007-2.4.1-5 | Award Amount: 1.83M | Year: 2008

There is little coordination in undertaking research in end of life care. This is due to lack of agreement on what constitutes end of life cancer care, no information on public or clinical priorities for achieving a good death in a culturally diverse Europe, few appropriate measures of quality, and a lack of established best practice. PRISMA aims to deliver an integrated programme to coordinate research priorities and practice. The work packages will undertake actions to identify cultural differences in end of life care, establish a collaborative research agenda informed by public and clinical priorities, and draw together best practice and resources for quality measurement. The Palliative Outcome Scale (POS) is a multidimensional tool that measures the physical, psychological, spiritual and information needs of patients and families at the end of life. It has been culturally adapted in 20 EU countries and widely used by over 100 services to evaluate and improve quality of care. However, there have been no opportunities to share practice, identify shared and country-specific domains, and coordinate to improve research across Europe. By coordinating POS use, PRISMA will offer a model to optimise end of life care research and measurement and identify both commonalities and differences in the evaluation of quality indicators for cancer patients and their families across Europe. Incorporating wide public/clinical consultation with the coordination of POS use into this programme will advance scientifically sound practice while taking account of cultural difference and public expectations. Through integrated action, we will exchange experience, shape best practice, and plan future collaboration through identification of priorities. This will enable research to harmonise and reflect the diversity and the needs of European citizens and clinicians. Support for the POS ensures that direct impact is felt between research and daily clinical practice.

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