Mhoira Leng

Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies

BackgroundMany 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.MethodsThree palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviewswith key informants, observationsof clinical encounters and the local health and social care context, and routine data from local reports and statistics.ResultsWe 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.ConclusionsProgrammes 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.

Palliative Care in Africa since 2005: Good Progress, but Much Further to Go

There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead.

Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed?

Objectives This study aimed to measure the magnitude of palliative care needs among hospital inpatients. Objectives were to: (1) determine the point prevalence of inpatients with active life-limiting disease and (2) describe multidimensional need for palliative care among these patients. Methods The study was a hospital inpatient census in Uganda. Patient notes were surveyed and those patients identified as having an active life-limiting disease were interviewed. Multidimensional palliative care need was assessed using the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS). Results 122/267 (46%) patient notes were found to indicate an active life-limiting disease. Diagnoses were; HIV/AIDS (74/122, 61%), cancer (22/122, 18%), heart failure (11/122, 9%), renal failure (11/122, 9%), liver failure (3/122, 2%) and chronic obstructive pulmonary disease (1/122, 1%). A total of 78/122 patients consented to be interviewed. Most patients reported multidimensional need in the three most negative of six categories for any APCA African POS question (75/78, 96%). Social problems included an inability to work (72/78, 92%), having unaffordable medical expenses (39/78, 50%) and limited access to food (11/78, 14%). Of those with a faith (76/78), more than a third (29/78, 38%) expressed the need for increased faith support. Conclusions The prevalence of active life-limiting disease reported here (46%) is greater than in comparable European studies (5–23%).This reflects the sub-Saharan increased disease prevalence, presentation at a later stage and limited access to curative therapies. There is need for symptom control, food, financial assistance and spiritual support. Service development should be tailored to meet these needs.

Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda

CONTEXT 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. OBJECTIVES To develop a prioritized research agenda for palliative care in Africa. METHODS 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. RESULTS 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. CONCLUSION 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.

Cancer Pain Management in Resource-Limited Settings: A Practice Review

Pain in cancer is a common and burdensome symptom with different causes but in a significant number of cases it is undiagnosed and undertreated because of lack of skills for its assessment. Pain has significant negative impact on the patient and, therefore, it needs to be managed urgently and appropriately. In resource-limited settings, there are several barriers and challenges to pain management but even in these circumstances pain can be well managed with planned and innovative use of resources and if the World Health Organization public health system approach is used to ensure opioid availability.

Understanding Models of Palliative Care Delivery in Sub-Saharan Africa: Learning From Programs in Kenya and Malawi

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. 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 the existing literature, that is, specialist, district hospital level, and community level. However, in looking further, findings show that 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.

Africans die in pain because of fears of opiate addiction

Attempts to improve palliative care services in Africa are being hampered by the fear that many African professionals have of using morphine therapeutically and by poor access to the drug, a conference was told last month.⇓ Many countries in Africa have no access to morphine so that palliative care is reduced to the level of supportive care without pain relief, delegates from 35 countries heard. They were attending the second palliative care conference for Africa, in Nairobi. While the worlds 20 richest countries consume 86% of global therapeutic morphine, countries such as Rwanda use just 0.039 mg per …

Integrating palliative care into national health systems in Africa: a multi–country intervention study

Background The WHO is calling for the integration of palliative care in all health care settings globally. Methods A 3.5–year program was implemented in 12 government hospitals, three each in Kenya, Rwanda, Uganda and Zambia. A four–pillared approach of advocacy, staff training, service delivery strengthening and international and regional partnership working was utilized. A baseline assessment was undertaken to ascertain needs, and 27 indicators were agreed to guide and evaluate the intervention. Data were also collected through surveys, interviews and focus groups. Results Palliative care was integrated into all 12 hospital settings to various degrees through concurrent interventions of these four approaches. Overall, 218 advocacy activities were undertaken and 4153 community members attended awareness training. 781 staff were equipped with the skills and resources to cascade palliative care through their hospitals and into the community. Patients identified for palliative care increased by a factor of 2.7. All 12 hospitals had oral morphine available and consumption increased by a factor of 2.4 over two years. Twenty–two UK mentors contributed 750 volunteer days to support colleagues in each hospital transfer knowledge and skills. Conclusions Integration of palliative care within different government health services in Africa can be achieved through agreed interventions being delivered concurrently. These include advocacy at Ministry, Provincial and District level, intensive and wide–ranging training, clinical and support services supported by resources, including essential medicines, and an investment in partnerships between hospital, district and community.

Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda

Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
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Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it

Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a “standards” document, which had two parts – the first composed of eight “essential” components and the second, 22 “desirable” components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the “standards tool” could be applied effectively in practice for self-evaluation of quality of palliative care services.