Elizabeth Namukwaya

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.

What is known about heart failure in sub-Saharan Africa: a scoping review of the English literature.

We systematically reviewed and summarised existing knowledge on heart failure in sub-Saharan Africa (SSA). We searched the following databases Web of Science, EMBASE, Ovid MEDLINE, PsychINFO, Global Health, CINAHL and African Journals Online using a combination of key words: heart failure or congestive heart failure or cardiac failure. We limited our search to studies conducted in SSA and articles published 2000–2014. Twenty-seven articles met our inclusion criteria and all were quantitative studies. Existing knowledge is focused on 3 key areas: (1) epidemiology of heart failure, (2) psychological burden of heart failure, and (3) patient knowledge and compliance to treatment. SSA would benefit from longitudinal qualitative research on the experience of living with heart failure.

‘I think my body has become addicted to those tablets’. Chronic heart failure patients’ understanding of and beliefs about their illness and its treatment: A qualitative longitudinal study from Uganda

Background Patients with heart failure in Uganda present for health care with advanced structural heart disease, have repeated hospitalizations and poorly controlled disease symptoms. The reasons for these are unclear. Literature from other settings shows that patients’ understanding of their illness and their beliefs influence their health related behaviour. The study aimed to explore the beliefs of patients with heart failure, their understanding of their illness and its treatment, and how this influenced their health related behaviour to inform future health education programs, information and palliative care services. Methods Serial qualitative in-depth interviews were conducted with Heart Failure patients who were purposively sampled and recruited in Mulago National Referral Hospital until thematic saturation was reached. In-depth interviews were conducted at three time points over the course of their illness with intervals of 3 months between interviews. A grounded theory approach was used in data analysis. The University of Edinburgh ethics committee, Mulago Hospital Research Ethics committee and the Uganda National Council of Science and Technology (Reference numbers D/GC/178; MREC 33, SS 3083 respectively) approved the research. Results A total of 40 face to face qualitative longitudinal interviews (36-patient alone, 4 paired-patient and family carer), were conducted with 21 patients. The findings revealed that heart failure patients were unaware of the symptoms of the illness and their definition of illness differed from that of health professionals. Patients understood their diagnosis, cause of illness, prognosis and the importance of the medicines differently from health professionals, and had insufficient information on self-care. Lay beliefs were used to explain many aspects of the illness and treatments. All these influenced where patients sought care and their adherence to treatment, self-care and follow up leading to uncontrolled disease. Conclusion There is a high level of health illiteracy among heart failure patients in Uganda. Patients rely on lay beliefs to make health decisions and medical information is often miscomprehended. There is an urgent need for health education using culturally appropriate information.

LESSONS FROM FOUR COUNTRIES IN SUB-SAHARAN AFRICA IN DEFINING AND DEVELOPING INTEGRATED MODELS OF PALLIATIVE CARE

Background The THET (Tropical Health & Education Trust) partnership project on Strengthening and integrating Palliative Care into national health systems commenced in 2012. The project aims at enhancing the provision of palliative care in Kenya, Rwanda, Uganda and Zambia through the integration of palliative care into existing services within 12 hospitals and their associated community hubs. Aims An important component of the programme was to capture the evolution of the models of integrated palliative care developed in each of the 12 hospitals. Methods We conducted a baseline assessment, ongoing review and dialogue with regards to the vision for palliative care service provision to help map the process. For each hospital a matrix was developed which built on the core internationally accepted components of a model of care e.g. staffing, setting, services provided, types of patients seen, referral process, management of patients, integration within the health systems etc. Results The process of defining and developing a model of care was unique for each setting, and was fluid and constantly changing. Different hospitals were able to articulate different components of the model at different stages, for example, some hospitals have clear visions for palliative care but are uncertain about options and best methods of implementing their visions. An important component of the model was mapping of the referral networks, which was challenging. Conclusion The process of defining and developing a model of integrated palliative care go hand in hand, changing over time. Defining a model is challenging, but integral to the development of that service. Support is needed to services to do this, and the model will evolve over time. Strengthening this process and providing evidenced based frameworks from similar settings showing health systems integration is an important means of support. Many lessons from Africa are relevant to more economically developed countries.