Health promoting palliative care interventions in African low-income countries: a scoping review

Principles of HPPC

1. Build healthy public policy: With regard to end-of-life care, building healthy public policy can mean involving community organisations and the public in developing policy that allows time off from school or work for people caring for someone who is at the end of their life.8

2. Create supportive environments: In supportive environments, community members take an active role in caring for people; assisting people to live comfortably in their homes; connecting people to supports; raising awareness about health, well-being and end-of-life issues and creating supportive networks to develop the capacity of others.9

3. Strengthen community action: This involves identifying needs, developing solutions and engaging community organisations other than those traditionally involved in PC.8

4. Reorient health service: This involves promoting holistic support for people at end-of-life and their families, and renormalising dying and death through various initiatives, such as death education in school curricula.8

5. Develop personal skills: This refers to the acquisition of personal skills as well as the development of competencies among the general public in supporting individuals at the end of life and their families.8

6. Reduce health inequity: Applied to PC, reducing health inequity means, for example, developing programmes intended to reach marginalised populations, such as people living with HIV, using drugs or experiencing homelessness.10

7. Empowerment: When it comes to end of life, empowerment relies, for example, on increasing one’s level of death literacy (ie, knowledge about the expected end-of-life journey and the various decisions that need to be made).11

8. Gender equity: Health promotion should enable men and women equally. Men and women should become equal partners.7

Following Kellehear’s groundbreaking work, health promotion has been incorporated into numerous PC programmes, interventions12 13 and frameworks intended to facilitate the adoption of PC in healthcare systems and more broadly in the social realm.14 15 Such interventions can include community mobilisation and participation, capacity building for community leaders and services provided by community volunteers and family caregivers. HPPC interventions have the potential to (1) provide holistic care by addressing medical and non-medical needs; (2) connect patients with organisations in their community; (3) reach populations that are less accessible; (4) reduce unnecessary admissions to healthcare facilities; (5) improve social capital through the pooling and effective use of community resources and (6) create social pressure to reorient policies.8

Despite the development of PC in low-income countries, there has been, to date, no synthesis of scientific knowledge on the consequences of interventions integrating HPPC in low-income African countries. Such consequences refer both to changes related to the process of care and to the effects of HPPC interventions.

State of PC development in Africa

A scoping review assessing PC development in Africa indicated that 14 countries (26%) had shown an increase in services during the period surveyed.16 Tanzania, Zimbabwe, Malawi, Mozambique, Rwanda and Swaziland have adopted PC policies. Postgraduate PC diploma programmes were offered in Kenya, South Africa, Uganda and Tanzania. Despite these expansions, the majority of African nations had little to no PC development during those years. Mozambique, Rwanda and Uganda were the only low-income countries where some growth in PC development was observed.16 An analysis of articles published from 2002 to 2018 indicated that four countries—South Africa, Uganda, Kenya and Malawi—accounted for two-thirds of African programmes to integrate PC into health systems, with South Africa hosting slightly under one-third.17 The authors noted that most studies did not describe the consequences of the interventions, although they observed an increase in publications from low-income regions.17 A report from Human Rights Watch noted that French-speaking African countries have limited access to PC and opioids in comparison to English-speaking African countries.18

In their rapid systematic review, Agom et al examined the state of knowledge regarding barriers to the provision and use of adult PC in Africa.19 Those authors found that patients lacked access to PC due to its unavailability, isolated services, poor funding, lack of or inadequate policy and inadequate referral practices.19 More recently, Maree et al looked at research output published by African nurses in the field of palliative cancer care from 2012 to 2021.20 Those authors found that existing studies focused on the family and caregivers. Pain was the only symptom investigated.20 Since these reviews, evidence has been published related to HPPC in Africa, but it has not been synthesised.21 22 It is also not clear whether these PC interventions have been funded through external donors or local resources, which may influence their sustainability and local capacity building.23

HPPC, which aims to empower both individuals and communities, is crucial in low-income settings, where access to high-quality PC services is limited. A better understanding of HPPC interventions in low-income African countries could be useful to identify service gaps and guide the development of these essential services. Our objective was to conduct a scoping review of the consequences of HPPC in low-income African countries.

Protocol and registration

We conducted a scoping review to map the core ideas behind our topic of interest as well as the primary sources and types of evidence available.24 We adhered to Arksey and O’Malley’s widely used methodological approach to ensure accuracy and replication.25 We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA) guideline to guide the reporting of the research process and results.26 The initial protocol was not registered.

Eligibility criteria

Information sources

The search strategy was developed with the help of a professional librarian with experience in health. First, we manually searched the Cochrane Library, Campbell Collaboration, International Prospective Register of Systematic Reviews and the grey literature looking for a review on the identified topic, but we were unable to locate any existing or forthcoming reviews. Then, we searched CINAHL, PubMed and PsycINFO in March 2023.

Search

With the help of the professional librarian, we developed a list of keywords and MeSH terms for concepts related to “health promotion,” “palliative care” and “low-income African countries”. Online supplemental file 1 features the full electronic search strategy for the three databases, including search terms, so that our strategy could be replicated.

Selection of evidence sources

The results were imported into Covidence, a software program for managing literature reviews.32 Two reviewers independently carried out a two-step review process (title/abstract and full text). They judged the titles and abstracts of potentially relevant studies based on the inclusion and exclusion criteria (table 1). They also looked for relevant publications in the reference lists of included papers. Disagreements between reviewers were resolved via discussion. When disagreements persisted, a third researcher was brought into the discussion.

Data charting process and data items

Once the articles were selected, one researcher extracted the relevant data using a data extraction form custom-designed in Excel. The following information was extracted to summarise the articles: name of the scientific journal, year of publication, authors’ countries of academic affiliation, source and type of funding, language, study country, aims, design, setting, targeted illness, participants, number of participants, outcomes measured, general results and study results linked to health promotion. We considered where the authors’ institutional affiliations were based (local vs abroad). If an article assessed multiple interventions in multiple countries, we only included the data emerging from the low-income African countries. A second researcher validated the data extracted by the first, and disagreements were settled through discussion to reach a consensus. When the disagreements persisted, they involved a third researcher.

Synthesis of results

General and specific information was described and summarised to chart the available literature. We conducted a thematic analysis using themes based on the principles of the Ottawa Charter for Health Promotion. The results section of this paper aims to answer the questions:

• What are the characteristics of the included articles?

• Which populations and illnesses were targeted in the studies?

• What are the links between the interventions studied and the concepts of the Ottawa Charter for Health Promotion?

• What are the consequences of the HPPC interventions studied?

• What are the sources of funding for the HPPC interventions studied?

Patient and public involvement

Neither patients nor the general public were involved in the planning, execution, analysis or reporting phases of this literature review.

Selection of sources of evidence

The search strategy led to a total of 2259 articles. After duplicates were eliminated, 1640 articles were left for title/abstract screening. We discarded 1541 articles during the initial screening because they did not meet the inclusion/exclusion criteria. Thus, 99 full texts were screened. Of these, 12 articles met our inclusion/exclusion criteria and were included in the analysis. Figure 1 presents the PRISMA diagram. It provides the number of articles screened, assessed for eligibility and included in the review, along with reasons for exclusions at each stage.

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What are the characteristics of the included articles?

All the studies were published after 2009 and in English. Seven studies reported using mixed methods.22 33–37 Four used qualitative methods, including photovoice.38–41 More than half of the studies were cross-sectional. One study reported using rapid evaluation techniques.42 Four used pretraining and post-training knowledge tests.22 34 35 37 Jane Bates et al conducted a prospective observational study.21 All but three had a sample size below 70 participants, despite the reported use of mixed-methods designs (table 2).

For the majority of the articles, the first author’s academic affiliation was not based in the local country where the study was conducted. Six articles had a first author based in the UK and three had a first author based in the USA. Three articles had a first author with an academic affiliation in the country where the study was conducted. Two articles did not include any authors from the country where the study was conducted. See online supplemental file 2 for more specific information on authorship.

The studies were conducted in a narrow range of settings. Of the 22 low-income countries in Africa, we found studies from only three countries: Malawi, Rwanda and Uganda (see figure 2). Of the six studies conducted in Malawi, three examined the same programme, that is, the St. Gabriel’s Hospital Community PC, based in a rural referral hospital in the city of Namitete.22 33 34 Of the seven studies conducted in Uganda, three emerged from Hospice Africa Uganda in the Kampala region39 40 43 and one from Mulago Hospital, also in Kampala.35 The multicountry study partly conducted in Rwanda included 3 of that country’s 47 hospitals.37 This was the only study that included a francophone setting. None of the studies were conducted in West Africa.

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Which populations and illnesses were targeted in the studies?

The majority of the included studies assessed interventions targeting all types of life-threatening illnesses. Two interventions targeted people living with HIV who also had cancer.39 40 One intervention targeted people with HIV only41 while another was implemented in one of the areas hardest hit by the AIDS pandemic.42 43 Two interventions targeted adults who had received a diagnosis of advanced cancer21 38 and one was about the development of children-specific PC.43

The majority of the articles did not clarify whether and how the programmes under study addressed sex and gender issues. Mburu et al41 highlighted the limited involvement of men in PC; initially, community-based PC was provided only by women, but men were increasingly involved in physically demanding tasks.

What are the links between the interventions studied and the concepts of the Ottawa Charter for Health Promotion?

The studies touched on between one and five of the health promotion concepts identified in the Ottawa Charter for Health Promotion (online supplemental file 3). Across the studies, we found that volunteers and caregivers played a key role in HPPC. Interventions seeking to strengthen community action by reinforcing the skills and knowledge of CHWs (usually unpaid volunteers) recommended by village leaders were more frequent. In this sense, the interventions drew on existing human resources in the community to enhance self-help and social support. However, unlike what is recommended in the Ottawa Charter for Health Promotion, their involvement did not translate into community action in setting priorities, making decisions and planning strategies to achieve better health at the system level.

About half of the interventions were aimed at developing personal skills through patient and family education. Only two studies were related to health promotion policy (eg, legislation, fiscal measures, taxation and organisational change).37 41

Interventions seeking to reorient health services mostly did so by strengthening home-based care. Changes in professional education, training and culture were addressed in two studies.35 37 For instance, in Grant’s study, complex beliefs in the efficacy of traditional medicine, negative views about morphine and ideas that curses are actual causes of disease were addressed and included in training and awareness sessions.37 In Downing et al’s study,35 a significant improvement was seen in nurses’ confidence after receiving training that addressed bereavement support, spiritual care, caring for children and supporting families.

Few studies explicitly addressed the concept of empowerment, even though it is one of the main objectives of health promotion. For example, in Mburu’s study, the goal of the project was to ‘empower people living with HIV to be able to provide care to their peers’.41 In Grant’s multicountry study, senior staff believed that the integration of PC empowered patients, allowing them to plan for the future. They spoke of no longer feeling helpless because they could do something for patients and engage with families better.37

The prerequisites for health mentioned in the Ottawa Charter were sometimes addressed (eg, food, income, peace and shelter). Amery’s study concluded that PC for children should provide medication for symptom control, support for food and basic needs, play and learning facilities, child protection and systems for patient education, communication and follow-up.43 In Bates’ study, PC improved well-being by providing pain and symptom management, thereby enabling patients or family caregivers to resume some of their household and income-generating tasks.38

What are the consequences of the HPPC interventions studied?

Six studies examined the effects of a training programme22 33–35 37 42 and found it increased the knowledge and abilities of the learners (ie, CHWs and nurses). According to the four studies that evaluated the effects of receiving PC from the viewpoints of patients and carers, PC decreased physical and emotional symptoms by offering pain and symptom management.38 39 42 43 The two studies interested in CHWs’ motivation for performing this role indicated that assisting others and receiving recognition were factors that encouraged them to maintain their commitment to the job.40 42 One study assessed the community systems supporting people living with HIV; its results revealed the extensive role of community systems, which included nutritional and bereavement support41 (see online supplemental appendix 1 for a summary of the results).

What are the sources of funding for the HPPC interventions studied?

To better understand the potential sustainability of HPPC interventions, we examined the sources of funding for these interventions. Most of the interventions included in this review were supported through British or American temporary funding. The Rupley-Church International Relations Grant, USA, contributed to funding a training programme in Malawi that resulted in three of the articles included in this study.22 33 34 The link nurse programme in Uganda was funded for 2 years by the Diana Princess of Wales Memorial Fund, based in the UK.35 The same fund sponsored the Malawi Home Based Care Charitable Trust,42 which was terminated in 2018 (www.malawihbc.org). Some authors expressed worries regarding the dependency of PC on external donors. According to Bates et al,38 the fact that centres of excellence for PC in Malawi remained heavily reliant on external donor funding challenged their sustainability while Jack et al39 highlighted that the community-based programme offered by Hospice Africa Uganda was at risk of financial instability that could impact the programme’s sustainability.

Dominance of community-based approaches within HPPC: navigating the challenges

The WHO has recognised the potential merits of deploying CHWs in the provision of PC in African countries.44 45 This helps to explain why most of the included articles relate to the effects of CHW training programmes,22 33 34 CHWs’ motivations for performing this role40 42 and the effect of their work on patients and families.39 All studies concluded that the effects of the CHW programmes were positive. However, only two studies adopted a quasi-experimental design (pre–post knowledge test).22 33 Some of the included studies pointed to challenges around CHW recruitment and retention. Jack et al39 observed that only nine of the original 40 volunteers in the first cohort of CHWs for the Hospice Africa Uganda programme were still active after 3 years. Long distances and the difficulty of coping with multiple dialects were stated as barriers. In line with this review, other investigations have identified fatigue and lack of adequate psychological support as further obstacles to CHW retention.46

Almost no representation of Northern, Western and Central countries, nor French-speaking countries within HPPC research

Out of 22 low-income African countries, only 3 countries—Malawi, Uganda and Rwanda— were represented in the 12 studies included, with Uganda accounting for almost half of them. One city (Kampala, Uganda) was the setting for three studies, while another (Namitete, Malawi) was the setting for three. Except for one multicountry study that included Rwanda, the other investigations were undertaken in English-speaking countries and, in most cases, with the participation of English and American scholars. Similarly, a review of publications in Africa between 2002 and 2018 revealed that South Africa, Uganda, Kenya and Malawi, all English-speaking countries, accounted for two-thirds of the interventions seeking to incorporate PC into health systems, with South Africa hosting about one-third of them.17 Over the past decade, there have also been indications of intra-sub-Saharan African collaboration. For example, in 2013, four physicians from Niger were trained in PC at Hospice Africa Uganda.47

We were not able to identify relevant studies conducted in Northern, Western or Central African countries. Moreover, French-speaking low-income African countries were not represented in the literature. This result is consistent with the conclusion of Rhee et al.48 These authors claim that the Palliative Care World Map developed by Wright et al has a positive correlation with publications on PC development.49 This map presents four categories of countries: (1) countries with no identified hospice-PC activity; (2) countries with capacity-building activity but no service; (3) countries with localised PC provision and (4) countries where PC activities are getting closer to being integrated with mainstream service providers.49 Chad, Guinea-Bissau, Mali and Togo belong to the first category (no identified hospice-PC activity) while the Democratic Republic of the Congo and Madagascar belong to the second (capacity-building activity).49

In the future, it would be interesting to examine whether countries with higher PC development have more HPPC initiatives. Moreover, future studies could examine whether there is a difference in types of HPPC interventions between countries with low income and high income.

Opportunities to develop HPPC and build healthy public policy in low-income African countries

PC delivery at home is the main approach in Africa.50 This model is heavily reliant on non-governmental, external and sometimes faith-based organisations.51 Despite the fact that CHWs, most often volunteers,52 may appear to be a solution worldwide, such a model lays a tremendous burden of duty on them. It should be noted that CHW training requirements and scope of practice vary between countries and interventions. Depending on the nature of their roles and responsibilities, it is important to equip CHWs with the appropriate ongoing support to assist them in dealing with the multifaceted aspects of palliative and end-of-life care.53 For example, open training resources about various aspects of palliative and end-of-life care are available for free online.54

One of the main axes of the Ottawa Charter for Health Promotion aims to build healthy public policy.7 This approach is coherent with the WHO’s four public health pillars to integrate and establish PC (government policy, PC education for health staff and the public, drug availability and a national strategy to implement PC).55 56 However, only one study was based on the WHO’s strategy, using the quadripartite approach of policy, education, drug availability and implementation to integrate PC as part of government-funded services in Kenya, Rwanda, Uganda and Zambia. The study involved English trainers and funding.37 In Uganda, for example, strides have been made to integrate PC into the public healthcare system. In March 2021, the health ministry directed all public hospitals to establish PC units.57 It is not possible to say with certainty that the WHO strategy for integrating PC led to the inclusion of PC initiatives in government policies, but the quadripartite approach might be one way to help PC become less dependent on outside funding. As such, developing strategies to implement PC in national public policy seems to be a promising orientation.

One of the main axes of both the Ottawa Charter for Health Promotion and Kellehear’s approach is the strengthening of community action.5 7 This scoping review highlights the need to explore how technology can be used to empower CHWs and strengthen their role in HPPC. In Wilson et al’s study, CHWs were trained to send text messages in real time to the nurse coordinator.22 All participants reported that the training programme helped them review skills and understand how to use technology. Technology could be useful to strengthen community action within PC in other settings.

Both the Ottawa Charter for Health Promotion and Kellehear’s approach focus on achieving equity in health.5 7 A few studies in this review showed how HPPC can improve health status and promote equal opportunities. Jane Bates et al showed that vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer, and that PC was associated with substantially reduced dissavings.21 In another study, Bates et al showed that PC can improve patients’ function, thereby facilitating income generation activities that were not previously possible due to illness.38 Moreover, some studies showed that strategies can be designed to provide PC, including free drugs, food and learning activities, to vulnerable populations (eg, children, rural populations and people with HIV/AIDS).43 More empirical evidence on how HPPC can influence health equity would be useful to raise awareness among leaders and policy-makers about how to improve service delivery.

Addressing the research gaps on HPPC in low-income African countries

Overall, literature about HPPC interventions in low-income African countries is scarce. Because most of the included studies used cross-sectional designs or short pre–post designs, we were unable to shed light on the long-term impacts of the interventions. The majority of studies used mixed methods, but the different components did not always adhere to the quality criteria of each type of method involved, as recommended by the Mixed Methods Appraisal Tool.58 Moreover, the sampling sizes were quite limited, and no studies conducted a formal process evaluation or cost analysis. Researchers could, therefore, consider carrying out longitudinal studies with larger sample sizes and cost analysis. Such research could help strengthen the evidence on implementation challenges in real-life settings, as well as on the effectiveness and cost-effectiveness of HPPC in low-income African countries, to help convince governments to integrate it into their service offerings.

The majority of the studies included in this review were led by researchers from the UK and the USA. In fact, some articles did not include any coauthors from the countries where the studies took place. Promoting African-led research could contribute to the development of local research capacity on HPPC, as African researchers possess local knowledge and insights that can be valuable when evaluating interventions. They are well positioned to understand and incorporate the cultural nuances and diversity in their communities. Such an insider’s perspective can enhance the relevance of research outcomes.

The fact that the studies and interventions evaluated were mostly supported through external projects with temporary funding also raises questions regarding the development of sustainable HPPC and research in low-income African countries. A sudden withdrawal of funds could disrupt ongoing research and health programmes. According to Kasprowicz et al, long-term investment from international donors and increased funding commitments from African governments are needed to create a critical mass of local capacity and to sustain research hubs that can address the challenges of complex health systems, such as HPPC.23

Limitations

There are some limitations to our review. First, we only included publications in English, French and Spanish. It is possible, yet unlikely, that we missed studies in other languages. Moreover, we limited the time period to 18 years. Second, it is possible, though somewhat improbable, that some articles published before that time period could have contributed some insight on this issue. Third, there may have been a publication bias. We could not include information on interventions that were not studied and thus were not documented in scientific articles. Lastly, many studies did not include very detailed descriptions of the intervention models under study, which limited our ability to analyse their content.22 35 38 42 43