Barriers to the Provision and Utilization of Palliative Care in Africa: A Rapid Scoping Review

Keywords

Palliative care, terminal care, hospice care, end-of-life care, supportive care, chronic disease (s), terminal disease, terminally ill, terminal illness, progressive disease, palliation, death and dying, pain, nursing, hospice, critical care, end of life, Africa, critically ill patients, social support, cancer, non-cancer. The name of individual countries within WHO classification of African region was also used.

Search strategy

• The electronic search across different databases used the key terms as a single search and combination of the key terms with Boolean operators and truncation (“OR” “AND”). The results were combined with each other as a single search to yield a broader result

• Citation tracking and hand searching of the articles identified on the reference lists

• Google and Google Scholar were also searched.

Knowledge and attitude of healthcare providers

The knowledge and attitude of the healthcare providers (physicians, nurses, pharmacists, social workers, medical interns, medical students, and the clergymen) were one of the dominant issues featuring in nine empirical studies and four reviews. Majority of nurses, doctors, and other medical staff were reported to be aware of PC,[141516] contrary to 61.8% of religious leaders and seminarians who had not heard of it.[17] Two studies conducted in Nigeria utilized questionnaires for data collection and concluded that healthcare professionals had good knowledge about PC because most the nurses and doctors understood PC to be active care for the dying, thought that PC was about pain or geriatric medicine, and felt that PC recognizes death as a normal process and affirms life.[1819] However, a similar study conducted in a different region of Nigeria reported that healthcare professionals had insufficient knowledge on the interdisciplinary nature of PC, service users who could benefit from palliation, and components of PC.[1516] These findings corroborate with studies which reported that only a few nurses selected from some hospitals in Congo and Ethiopia had good knowledge of PC.[2021]

The study by Kass et al.[20] acknowledged that nurses who had formal training in PC had greater knowledge than others who had no such training, while other sociodemographic variables had no association with level of knowledge. Nnadi and Singh[16] reported positive relationship between the number of sources of information and knowledge level about PC. In addition, they also stated that medical interns' PC knowledge level improved the following analysis of postintervention questionnaires from posteducational intervention lectures.[16] The authors report that their findings underscore the need for inclusion of PC into the school curriculum at both undergraduate and postgraduate medical and nursing education.[16]

In the three studies mapping the level of PC development across several countries of the world, Kenya, Uganda, and South Africa were three out of 47 African countries that were consistently placed in the group of countries with a broad awareness of PC by healthcare professionals and local communities.[222324] In contrast, 12 African countries (Botswana, Congo, Egypt, Malawi, Zambia, Zimbabwe, Nigeria, Morocco, Gambia, Tanzania, Sierra Leone, and Swaziland) were grouped among countries that had partial/local awareness of PC.[2223] The 2015 QOD Index conducted by the EIU reported that Uganda and Zimbabwe were the only two countries in the African region that ranked topmost in the category of community engagement. This implies that there were African countries where healthcare providers and nonmedical members of the society had some awareness and understanding of PC.[1] The countries where the public and healthcare professionals were reported to have limited understanding and awareness of PC included Malawi, Morocco, Nigeria, Egypt, Ethiopia, Ghana, Kenya, South Africa, and Zambia, while Botswana was the only country which was reported that healthcare professionals and other members of the public had no awareness or understanding of PC.[1] Regardless, four studies reported that all participants (healthcare professionals) had favorable/positive attitudes about PC.[19202125] Positive attitude toward PC shown by nurses was found to be associated with higher levels of education, working in medical wards, and PC training, but age, gender, and work experience had no significant association with attitude toward PC.[20]

Factors related to patients and caregivers

Nineteen papers explicitly discussed awareness of PC, knowledge and attitude, poverty, late presentation, and religion as the factors peculiar to the patients and their families which impacted on the use of PC. Substantial differences in the awareness of PC existed among patients and their families in 47 African countries.[122232426] Uganda, Kenya, and South Africa were three countries where local communities and society, in general, had a broad awareness of PC, whereas local communities in other African countries had only partial awareness of PC.[222324] These findings lend credence to findings reported by Opoku,[25] where 79 out of 115 respondents in Ghana indicated their awareness and knowledge about PC, although the majority of these participants were neither aware of the healthcare settings that provided PC services, nor were they aware of persons who had received PC in Ghana. Conversely, three studies found that majority of patients and their family members had no knowledge of, and were inadequately aware of, PC and hospice care services.[272829] However, it was reported in the 2015 QOD that no public awareness or understanding of PC exists in Botswana.[1] Two studies provided insights that the level of education impacted on whether respondents had, or had no knowledge of PC,[2729] indicating that higher educational level was associated with higher level of awareness/knowledge. Remarkably, there was consensus in the literature that patients desired knowledge about PC, particularly in respect to the causes of cancer, treatment options,[30] as well as aspects of PC, which would require decision-making.[31] Although agreement existed in the literature about poor public knowledge of PC in many of the African countries, most of the patients from Nigeria, Ghana, Uganda, and Zimbabwe demonstrated a positive attitude toward PC through their expression of acceptance and willingness to receive PC.[252627]

Overall, the reviewed evidence indicated that the public (patients and their families) were unlikely to seek PC because of their inadequate knowledge of it. It could also be for reasons related to cultural acceptance of spiritual and traditional care practices since they were keen to seek care from churches, mosques, spiritual homes, and traditional medicine people.[2526] The few patients and their families who were knowledgeable about PC, as well as those without knowledge of PC, often presented themselves for PC in the healthcare setting at the advanced stage of their illness, and this accounted for complications and poor quality of life.[263233] Late presentation of illness was further complicated by poverty and the religious beliefs of the patients and their families. Specifically, most of the patients perceived that PC was expensive, and therefore, they were reportedly unable to pay due to poverty and lack of health insurance coverage, leading to a high rate of patient drop-out, stoppage, or restricted access to PC.[25283435]

Notably, Lewington et al.[34] reported that majority of patients and their families had faith in God, while other articles also showed that patients and their families had inclinations to religious beliefs.[25] The study by Opoku mentioned that religious belief system and sociocultural background were cited in the minority among listed factors that Ghanaians indicated to be obstacles which affect the provision of PC.[25] The study conducted in Nigeria which used a modified needs questionnaire, identified some spirituality concerns in which 86% of the cancer patients felt that “God is a doer,” with few patients of the opinion that God was a supporter and could heal them.[30] Further, an impression about religious belief as a barrier to PC was made in another study conducted in Nigeria where it was reported that most of the patients and their families resorted to an attempt to reconcile hope with religion,[36] leading to hopes for miraculous cures, healing, and recovery.[3036]

Availability and accessibility of palliative care services

Thirteen primary studies reported limited availability of PC, with poor access for the service users in various countries, including Nigeria, Ghana, Kenya, Malawi, and Ethiopia.[25272829303236373839404142] Of these countries, Malawi and Kenya seemed to have the most comprehensive PC services delivered across specialist, district hospital, and community levels.[38] A survey about national PC capacities around the world found that only 20% of the African countries had PC available in primary healthcare for patients with noncommunicable diseases.[42]

A review mapping the level of PC development in Africa reported that as of 2005, PC services were unavailable in 21 out of the 47 countries included in this study,[22] with no progress made by the time 2006 global mapping of PC development was conducted.[24] However, progress was made in 2011, as six countries (Libya, Ethiopia, Namibia, Sudan, Cote d'Ivoire, and Rwanda) had established PC services, although there was still an absence of PC services in 28 of the 54 countries in the African region.[23] Additional progress had been made since 2011 whereby 14 countries increased the number of PC services they provided, of which there were the greatest increases in South Africa (from 120 to 210), Kenya (from 8 to 44), Uganda (from 8 to 34), Tanzania (from 4 to 20), and Nigeria (from 5 to 7).[2324] This trend was also reported in another scoping and narrative review.[2643] Other countries that have also made progress include Mali, Botswana, and Egypt.[23242643] These studies provided useful insights into the extent of the availability of PC services in African countries, showing its lack in some African countries, consistent with the findings in the review by Harding and Higginson,[44] conducted over a decade ago. This suggests lack of PC development over a 12-year period. Similarly, the most current QOD index which assessed the quality and availability of PC services for adults in 80 countries around the world showed that the majority of the African countries were clustered at the lowest part of the index, with Nigeria at the bottom of the index.[1] Nevertheless, the African PC Association (APCA) Atlas of PC in Africa shows that some African countries have made some improvement, with Uganda and South Africa still having the highest number (229 and 160, respectively) of hospice or PC services.[45] Rwanda, Kenya, and Nigeria, have 54, 70, and 17 hospice or PC services, respectively, while Republic of Congo, Equatorial Guinea, and Madagascar have only one hospice or PC services.[45]

Generally, evidence from the literature has shown that availability and provision of PC across African countries are still patchy and its access is limited to seriously and/or terminally ill and dying patients and that it has not been integrated into the mainstream of healthcare systems in almost all the African countries, with the except of Uganda, Kenya, Malawi, Zambia, Tanzania, and Zimbabwe.[232646] Other potential key factors accounting for the limited access include late presentation, inadequate referral systems, client's previous knowledge of PC, and service users' incomes.[282932] Efforts are being made to improve access through the use of mobile phones to deliver PC and home visits by professionals.[324147] However, barriers (patients not having access to phones, limited mobile networks, and access to expertise and hardware) required for the use of mobile phone for PC delivery[28] and lack of vehicles for home visits[47] have made access to PC ineffective.

Symptoms prevalence, burden, and control

Twelve articles examined symptom prevalence for patients and families who had received PC and their experiences in relation to symptom burden and control. The most prevalent symptoms reported by patients and their families included worrying, feeling sad, lack of energy, pain, sexual problems, weight loss, nausea, coughing, constipation, information, family burden, unable to walk, shortness of breath, anxiety, depression, spiritual issues, inability to share feelings, family burden, need for financial assistance, nutritional support, home-based care, and counseling.[283034394041484950515253] The general public, particularly those with chronic and/or terminal illness, were motivated to seek PC so that these symptoms and needs (physical, social, emotional, spiritual, and information) could be addressed.[25] Unfortunately, patients and their families across all these studies were dissatisfied with symptom control as demonstrated by poor scores in all questions contained in the APCA Palliative Outcome Scale (POS)[3451] and the Memorial Symptom Assessment Schedule Short Form (MSAS-SF).[50]

Overall, pain was the most reported complaint and the lowest ranked item in POS and MSAS-SF in terms of satisfaction with care, reflecting high levels of dissatisfaction with PC. Other highly prioritized needs of the patients and their families were information need, family burden, dying at home, and home-based care. These needs were unmet, resulting in poor quality of life,[4853] which had contributed to the request for euthanasia made by some patients, for fear of being a burden to their families or relatives.[54]

Education and training for healthcare professionals in palliative care

Three primary research papers found that healthcare professionals from Rwanda and Nigeria complained that they lacked formal training in PC, although they had learned about some aspects of PC while providing care to service users,[143648] confirming what has been reported in the literature about the development of PC in Africa.[222324] Findings across the previous review papers about PC consistently reported that countries such as South Africa, Uganda, Botswana, Kenya, Zambia, Swaziland, Malawi, Rwanda, Namibia, Nigeria, Ethiopia, Egypt, Cote d'Ivoire, and Tanzania had developed national PC programs which were either being implemented in collaboration with local universities or were planned to be implemented.[2223242643] Uganda and South Africa were the two countries in the African continent recognized to have developed educational centers and academic links forged within universities.[2326] This finding revealed that there is a complete lack of PC education or training institutions for healthcare professionals in most African countries, despite the desire among healthcare professionals across many countries, such as Nigeria, to be trained in PC.[14]

The lack of education or training institutions for healthcare professionals in most African countries was recognized as a possible factor explaining the lack of knowledge of PC among the professionals, which leads to misunderstanding of what PC is, and impacting on care provision.[35] In addition, this shortfall may possibly have contributed to the shortage of staffing for the provision of PC. The finding from the 2015 QOD index showed that many African countries belonged to the category of countries that had a shortage of specialized PC professionals, with the exception of countries such as Uganda, Morocco, and Egypt, which had specialized PC professionals, although specialist PC training is generally not accredited by national professional boards in these countries.[1]

Political factors

The political factors that were described in the 16 included articles as hindering the provision of PC include limited availability/accessibility to opioids, funding, and policy for PC. While three empirical research studies reported on the unavailability of and/or limited accessibility to opioids in countries such as Malawi, Nigeria, Kenya, Namibia, and Cote d'Ivoire,[353649] the survey, which involved 75% of countries in the African region, found that 14% of them had oral morphine available in most of their pharmacies.[42] The likely factors explaining the limited availability/accessibility to opioids included opiophobia, lack of knowledge, inadequate trained workforce for opioid prescription, lack of nurse-prescribing laws/policy, and lack of infrastructure to store and distribute them.[22263555] This limited availability/accessibility to opioids contributed to unmet pain needs for the terminally ill and dying patients.[28404849505152] Although there was limited availability/accessibility of opioids in most African countries, countries such as Uganda, Kenya, Malawi, Zambia, Tanzania, Ethiopia, and Zimbabwe were reportedly making great progress to improve their availability and accessibility.[232655] Only South Africa belonged to the countries in which opioid analgesic were available, but access was restricted by bureaucratic forces.[1]

Another identified political factors hindering PC were funding and policies. The multi-method review that mapped the level of PC development in 2007 showed that 26 out of 47 African countries with a known PC activity hugely depend on external funding for PC.[2224] The similar review conducted 4 years later showed there was no significant improvement in the commitment by the government for funding PC because majority of African countries were still reliant on the external financial aid to fund PC except Cote d'Ivoire that has established multiple sources of funding for PC.[23] Poor funding of PC has continued to exist in most of the African countries as shown in the 2015 QOD index and other reviews[1] and as also acknowledged in a narrative and scoping reviews.[2643] The availability of public funding for PC which is one of the three indicators assessed on the category of affordability of care among other five categories in the QOD index showed that few African countries such as Uganda, Ghana, and Kenya had government funding for PC though funds were difficult to access.[1] Nigeria ranked last in this category among other 80 countries assessed in this index, though countries such Malawi, Tanzania, and Egypt also had total absence of government subsidies for individuals accessing PC, unlike other countries (Botswana, Ethiopia, Morocco, South Africa, Zambia, and Zimbabwe) that had a limited number of government subsidies.[1] This could be an indication that most governments in Africa seemed to be generally reluctant in the internal funding of PC.

Furthermore, the healthcare professionals that participated in the empirical study conducted in Nigeria reiterated lack of government funding for PC.[36] Likewise, the in-country experts in PC from Ghana, Kenya, Mozambique, Nambia, and South Africa unanimously reported that their countries have continued to depend largely on external funding for PC.[35] For instance, they reported that the withdrawal of external funding for HIV/AIDS in South Africa caused closure of many hospices.[35] Concordant with previous findings, a survey about countries' capacities for the prevention and control of noncommunicable diseases which included questions on a number of PC development metrics among WHO member states reported that a small proportion of countries in the African region had funding available for PC.[42] This implies that funding of PC may still be one barrier to PC development in African countries. However, these studies did not capture the underlying reasons for this poor funding, suggesting a need for a more comprehensive and in-depth study.

Lack of and/or inadequate policy implementation for PC were revealed as a barrier to provision of optimal PC in the empirical research conducted in Rwanda and Nigeria.[3648] However, these two studies did not provide explanations as to why there was lack/inadequate policy for PC. Other African countries appear to be in a similar situation because only 54% of 35 countries in the African region that participated in the survey conducted by Sharkey et al.[42] had a national policy for noncommunicable diseases, including an operational policy for PC. Other previous reviews have also shown that most of African countries lacked policies for PC.[22232426] However, countries such as Uganda, Kenya, Zimbabwe, South Africa,[222324] Cote d'Ivoire, Rwanda, and Tanzania[2643] were reported to either have integrated PC into healthcare policy or are gaining wider PC policy recognition.