Barriers and strategies in care delivery for type 1 diabetes in Sub-Saharan Africa: a scoping review

doi:10.21203/rs.3.rs-4186601/v1

Background: Type 1 diabetes is one of the most common chronic diseases in children. More than 1.2 million young people under the age of 20 are affected, the majority of whom live in low-income countries. The delivery of care for type 1 diabetes at both clinical and health system levels in Sub-Saharan Africa is an important element of protecting child health, preventing complications of type 1 diabetes, and supporting families among vulnerable populations. The successful implementation of effective care delivery requires considering a variety of obstacles and using effective and contextually appropriate strategies to overcome them. This scoping review describes and categorizes the most important barriers to type 1 diabetes care delivery in Sub-Saharan Africa and provides an overview of the types of strategies that are used to overcome these barriers.

Methods: We identified 524 articles including peer reviewed publications, gray literature, and documents from agency sites in 5 different databases published from 1990 until the end of 2020. A total of 38 articles were included in the data synthesis. The content was analyzed using a qualitative synthesis approach.

Results: Barriers to the care delivery of type 1 diabetes in Sub-Saharan Africa are related to contextual factors at several levels: health system, policy, structure and performance, patient factors, and socio-cultural factors. The core elements of successful strategies for care delivery of type 1 diabetes in Sub-Saharan Africa are education (glycemic management), staff training, and social support (social interaction).

Conclusions:Available evidence indicates that structured care delivery can improve the health of people living with type 1 diabetes in Sub-Saharan Africa. Obstacles in the case and population care delivery of type 1 diabetes and the health of people living with type 1 diabetes need to be analyzed before strategies adapted to the context and specific target groups can be developed.

care delivery

type 1 diabetes

scoping review

obstacle

strategy

Sub-Saharan Africa

Type 1 diabetes (T1D) is a serious chronic condition with a risk of life-threatening complications, and the financial burden associated with managing this disease is high. It is an autoimmune condition where the pancreatic beta cells lose their function such that patients become insulin dependent. T1D is one of the most common chronic diseases in children, with a rising incidence worldwide, however with significant differences between countries, with some regions having much higher rates than others. More than 1.2 million young people under the age of 20 have T1D and more than half of them live in low-middle income countries [1]. T1D exists in Sub-Saharan Africa (SSA), but its incidence is underestimated [2] and estimates vary widely across countries. Recent studies report an annual incidence of 10.1/100,000 in Khartoum among children under 15 [3]. The peak age of onset reported also varies widely: 15–19 years in Tanzania, 22–23 in South Africa, 20–25 in Ethiopia [4]. The reasons for this evolution are unclear, but an interaction between genetic and environmental factors is suspected [1].

T1D in children today poses a particularly challenging problem in Africa [5, 6]. At the patient and family level, managing T1D includes constant surveillance of blood sugar, at a minimum 4–10 times per day; insulin injections at a minimum 3 times per day; nutritional management including carbohydrate counting; treatment of hypo- and hyperglycemia; knowledge on all factors influencing blood sugar levels (e.g., activities, exercise, stress, school) and interpretation of blood glucose trends and adjustment of treatment regimen. Phenotypes of T1D in this region are poorly characterized and information regarding etiology and epidemiology is scarce [7]. In SSA, the lack of financial resources and education, food insecurity, difficulty in accessing health care as well as insulin and care supplies, and stigma make the care delivery of T1D even more difficult [8]. Living with T1D remains a challenge for the child and the whole family in SSA, even in countries where there is access to multiple daily injections or an insulin pump, glucose monitoring, structured education on diabetes and specialized medical care [1]. There is a high risk of precocious mortality and morbidity due to short-term complications such as hypoglycemia and diabetic ketoacidosis, and long-term complications such as those of the eyes, kidneys, nervous and cardiovascular system. The social, personal, and financial burden associated with managing this disease is enormous.

The care delivery of T1D can be defined as the development and implementation of a set of measures, decisions, initiatives, and action plans aimed at solving the problem posed by T1D, from the population and health system level to the patient and family level. Care delivery entails a commitment to identify, care for, assist, and provide education, management recommendations, and psychosocial support to those affected. The care delivery of T1D therefore involves identifying their needs and adopting an appropriate approach, both at the individual patient level and at the broader family, community, health system and societal levels.

The care delivery of T1D in SSA is subject to structural constraints that may be internal contextual factors, social and external realities and foreign policies that do not always favour adequate care delivery of the disease. Factors at the levels of clinical case care delivery, patient and family can negatively affect the results of the care delivery of T1D in SSA, leading to failure of diagnosis, inadequate and inappropriate care, frequent episodes of acute diabetes-related emergencies (e.g. hypoglycemia, diabetic ketoacidosis), frequent episodes of infections including malaria, lack of family support, stigma, difficulties in accessing clinical services, insufficient knowledge of the disease among patients and healthcare professionals, and negative interactions with cultural aspects of medical care [9] (These include acceptance of the disease and mental burden: the patient must constantly think about blood sugar levels, nutrition, injecting insulin, the risk of complications and beliefs about the etiology of the disease (a spell or punishment).

Care delivery interventions at both population and clinical care levels should include multisectoral approaches to enable country infrastructures to support workflow-focused- or provider-focused T1D care. This implies strengthening health systems to meet T1D care delivery needs; providing diagnostic tools; collecting reliable data; moving towards more patient-centred care; removing barriers to accessibility and affordability of drugs - especially insulin, blood glucose meters and strips - and care; training of professionals and health workers; addressing adherence issues and family and community support; developing relevant educational materials; and ensuring patient empowerment [10].

The success of any implementation depends on considering a variety of obstacles and using the right strategies to overcome them. This study aims to describe and categorize the most important obstacles and report effective strategies implemented in the care delivery of T1D in SSA. The specific research question for this review is: what are the obstacles and strategies put in place in care delivery of T1D in SSA from 1990 to 2020? Since few systematic reviews and synthesis have been published covering the growth in research since the 1990s, an update is needed which takes the current situation into account. To our knowledge, this is the first study to provide an overview of different kinds of suitable strategies that are directly related to the underlying barriers. This study should provide information on barriers and the strategies that are needed to promote the effective implementation and integration of actions in care delivery of T1D in SSA.

This scoping review follows the methodology proposed by Arksey and O'Malley [11] to help map, review and synthesize a wide range of existing evidence. This type of review was chosen because the area of interest is complex. In conducting a scoping review, we sought to identify and comprehensively describe barriers and developments in T1D care delivery in SSA. We searched 5 databases (Embase, Global Health, PubMed, Science direct, Web of Science) according to the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [12]. We also looked for grey literature, guidelines, reports from important agencies including the International Diabetes Federation, the World Health Organization and International Society for Pediatric and Adolescent Diabetes.

This review included a wide range of published and unpublished studies encompassing meta-analyses, randomized controlled trials (RCTs), case-control studies, case series and case studies that assessed care delivery strategies of T1D and the factors associated with T1D in SSA in a young diabetic population. Theoretical conceptual documents obtained from Google Scholar were also included to identify the concepts relating to the theme to broaden our field of research. A filter restricted the search to studies and reviews limited to children aged 0-18, in French and English languages. All articles indexed in the 5 databases and published from 1990 until the end of 2020 were considered. (1990 - date on which most of the care delivery strategies related to T1D in SSA seem to have emerged following the Bamako initiative (primary health care rehabilitation program launched in 1987 by James GRANT, director of the United Nations Children's Fund -UNICEF) and the constraints encountered in the implementation of primary health care and the ambition of health for all). The search algorithm focused on multiple search terms mentioned in the title and abstract. Each title and abstract of the literature search results was reviewed to determine if the article should be reviewed further. We included articles even when there was insufficient information to determine relevance.

To narrow the search results, synonyms for "care" were combined with the search terms "type 1 diabetes", "diabetes mellitus", "Sub-Saharan Africa" and other search terms that indicate aspects of "care delivery, obstacles or strategies". The following search algorithm was used:

[“management” or “care and support” or “taking care of” or “support”] and [“Diabet* ” or “ T1DM ” or “T1D” or “ diabetes mellitus ”] and [“africa” or “west* africa*” or “east* africa*” or “centr* africa*” or “south* africa*” or “Angola” or “Burundi” or “Democratic Republic of Congo” or “DRC” or “Cameroon” or” Central African Republic” or “CAR” or “Chad” or “Republic of Congo” or “Equatorial Guinea” or “Gabon” or “Kenya” or “Nigeria” or “Rwanda” or “Sao Tome and Principe” or “Tanzania” or “Uganda” or “Sudan” or “South Sudan” or “Djibouti” or “Eritrea” or “Somalia” or “Botswana” or “Comoros” or “Lesotho” or “Madagascar” or “Malawi” or “Mauritius” or “ Mozambique” or “Namibia” or “Seychelles” or “South Africa” or “Swaziland” or “Zambia” or “Zimbabwe” or “Benin” or “Mali” or “Burkina Faso” or “Cape Verde” or “Ivory Coast” or “Gambia” or “Ghana” or“Guinea” or “Guinea Bissau” or “Liberia” or “Mauritania” or “Niger” or “Senegal” or “Sierra Leone” or “Togo”.tw,kw].

After reviewing the title and abstract and identifying duplicate articles, 452 of 524 articles were excluded. 72 articles were considered in the selection of full texts. An additional 39 were excluded for the following reasons:

• Type 2 diabetes (T2D) or average age over 18 (n=6),

• Topic on atypical adult diabetes (n= 18),

• No direct reference to results in relation to obstacles and evolution of T1D care delivery in SSA (n=15)

The number of articles excluded for each criterion is indicated in parentheses. A manual search was performed of the reference lists of all full texts, which led to the inclusion of five additional articles. Finally, 38 articles were included in the qualitative analysis of the scoping review. Reference lists of all identified articles were searched for additional studies to include.

The content of the articles was analyzed using a qualitative synthesis approach [13] which made it possible to bring together various perspectives in terms of theoretical bases, techniques for collecting and analyzing data and contextual information, in order to identify important obstacles and strategies in the care delivery of T1D in SSA. During the analysis process, particular attention was paid to the link between obstacles and adequate strategies in time and space.

Studies and reviews were included in the synthesis. If obstacles and/or strategies were mentioned, they were included in the reference framework that we developed for our study.

Our adapted PRISMA flow diagram is shown in Fig. 1. The search algorithm developed above identified 524 articles including gray literature and organizations' websites. Overall, the 38 articles included in the review consisted of 16 empirical studies and 22 theoretical reviews or concept papers (Table 1). All the studies focused on disease care delivery strategies in relation to obstacles in SSA. The geographic scope included several unspecified countries (n = 16), grouped countries (n = 2), Cameroon (n = 4), South Africa, Tanzania, Sudan, and Ethiopia respectively (n = 2) and Uganda, Ghana, Mali, Benin, Rwanda, Gabon, Kenya, and Nigeria.

Together, the results of these articles provided definitions of T1D and prevalence rates. The internal (social realities) and external (foreign policies) contextual obstacles related to care delivery in SSA as well as the related strategies were also mentioned. In 26 articles, barriers related to T1D care delivery strategies in SSA were discussed; 9 articles did not focus on a specific disease but described barriers and strategies on chronic disease care delivery in general. Overall, 28 articles included information on T1D care delivery in SSA and 7 describe strategies for implementation. Some articles described both aspects of care delivery and strategies for implementing them (n = 3), although these varied according to socio-cultural and political contexts. Further information on the articles included in the qualitative synthesis is given in Table 1.

Table 1

Studies included in the qualitative synthesis.
References	Country	Type of article / methodological approach	Specific to T1D/Generic
[14]	12 SSA countries	Systematic review / Mixed methods	Generic
[10]	Uganda	Cross-sectional study / Quantitative	T1D
[15]	Mozambique, Zambia, and Mali	Systematic review / Qualitative	T1D
[16]	Cameroon	Systematic review and meta-analysis / Quantitative	T1D and generic
[17]	Not indicated	Synthesis review	T1D
[18]	Not indicated	Cohort study / Quantitative	T1D
[19]	Not indicated	Systematic review / Qualitative	T1D
[20]	Not indicated	Cross-sectional study / Quantitative	T1D
[21]	Benin	Retrospective study / Quantitative	T1D
[22]	Ethiopia	Case-control study / Quantitative	Generic
[23]	South Africa	Cohort study / Quantitative	T1D
[6]	Not indicated	Systematic Review / Quantitative	Generic
[9]	Not indicated	Systematic review / Qualitative	Generic
[24]	Ghana	Scoping review / Qualitative study	T1D
[25]	Not indicated	Retrospective study / Quantitative	T1D
[26]	Cameroon	Longitudinal study / Quantitative	T1D
[27]	Rwanda	Retrospective study / Quantitative	T1D
[28]	Cameroon	Cross-sectional and descriptive study / Quantitative	Generic
[29]	Not indicated	Systematic review / Quantitative	T1D and generic
[30]	Not indicated	Descriptive study / Mixed methods	T1D
[7]	South Africa	Scoping review / Mixed methods	T1D
[31]	Not indicated	Scoping review / Quantitative	T1D
[32]	Not indicated	Critical review / Quantitative	Generic
[33]	Cameroon	Case-control study, non-randomized controlled clinical trial / Quantitative	T1D
[34]	Mali	Observational prospective study / Quantitative	Generic
[35]	Not indicated	Systematic review / Quantitative	T1D
[36]	Tanzania	Prospective registration study / Quantitative	T1D
[4]	Sudan	Prospective registration study / Quantitative	T1D
[37]	Ethiopia	Cross-sectional study / Mixed methods	T1D
[38]	Gabon	Longitudinal study / Mixed methods	T1D
[39]	Kenya	Quantitative study	T1D
[40]	Not indicated	Scoping review / Mixed methods	T1D
[41]	Nigeria	Retrospective study / Quantitative	T1D
[42]	Sudan	Descriptive cross-sectional study / Mixed methods	T1D
[43]	Not indicated	Systematic review / Quantitative	T1D
[44]	Not indicated	Study report / Quantitative	T1D and generic
[45]	Not indicated	Systematic review / Qualitative	Generic
[46]	Tanzania	Cross-sectional study/ Quantitative	T1D

Obstacles and strategies in care delivery of T1D in SSA

Table 2 summarizes the obstacles, strategies, and developments in care delivery of T1D in SSA between 1990 and 2020 mentioned in the included articles. We distinguished three types of contextual obstacles: those related to the health structures of many SSA countries, to the patients themselves and to the socio-cultural context, to highlight the different levels at which the strategies are and can be focused. Strategies in the care delivery of T1D in SSA can be broadly classified as workflow-focused [15] (minimizing contextual barriers and create conditions to promote sustainable behavioral changes) or provider focused [14, 19] (minimizing provider-level barriers and creating facilitators for adherence to disease-related recommendations). While some articles highlighted the need to address upstream, structural barriers (health structure, broader funding policies, sociocultural context) and patient and community engagement that can be supported independent of interactions with the health system, this review focused on care delivery and thus highlighted strategies addressing the delivery of care - including its intersections with patient- and family-side barriers and priorities.

Table 2

Obstacles and strategies in the care delivery of T1D in SSA.
Levels	Obstacles	Strategies (workflow-focused and provider-focused)
Health structure of Sub-Saharan African countries	- Education (schools) and prevention - Insufficient medical staff (lack of competence, learning culture and motivation) - Financial costs - Difficulties in accessing quality health structures (primary care) - Health policy oriented towards communicable diseases	Workflow-focused and provider-focused - Organization of the health system - Dissemination and education
		Workflow-focused - Data collection for prevention of complication - Diagnosis assistance and medication - Raising awareness of healthcare costs
		Provider-focused Training and availability of health workers
Patients	- Poverty - Inability to follow a suitable diet - Compliance - Lack of formal and family support - Financial burden - Education (low health literacy)	Workflow-focused and provider-focused - Community engagement and diabetes associations - Use of motivational interviewing and problem-solving techniques
Patients		Provider-focused - Patients buy-in, education and empowerment - Encouragement of family support
Sociocultural	- Low social acceptance of the disease - Social representations and stigma - Difficulties in therapeutic adaptation - Access to information	Workflow-focused and provider-focused Foster a positive political environment.
Sociocultural		Provider-focused Make information about T1D accessible

The contextual obstacles mentioned in several articles can be grouped into three main levels:

1. Health systems, services, and policies [9, 24, 47]. Many SSA countries have very limited resources which are notoriously insufficient to deal with the scale of the problem. In addition, The health policy of several Sub-Saharan African countries is strongly oriented towards the care delivery of communicable diseases, in particular HIV, to which most of the available funds are allocated with insufficient resources for the prevention and care of chronic conditions such as diabetes and hypertension [48]. In the early and mid 2000’s, some governments thought that these chronic non-communicable pathologies would not have time to appear because of the mortality due to HIV affecting young subjects [48]. Because policies and programmes develop and maintain momentum, decisions made in the early 2000s continue to affect the organization and delivery of care today. Despite the creation of specialized T1D care centers in some regions of SSA, the active role of these centers is limited due to the inequitable allocation of government resources and a lack of policies and strategies [42].

The consequences of this resource insufficiency are grave. Doctors and nurses with specialized expertise in pediatric diabetes are rarely available or accessible. Families are forced to pay out of pocket for their child’s diabetes care and supplies since public health budgets as well as the public health system do not regularly provide such care [8]. High mortality and high complication rates occur in those who survive [1, 49]. The most minimal care is beyond the means of many families who face additional costs, notably, consultations, travel, and indirect costs [8, 42, 50–52]. Secondary prevention (to prevent acute and chronic complications) and education are not promoted enough when they should be a priority [9]. The current organization and inadequate funding of T1D care do not support patient empowerment, knowledge, and capacity for self-care delivery [42]. As a result of these multiple access barriers, patients are forced to undertake long and costly travel to reach consultation centers with overworked doctors or nurses who are inadequately trained to manage T1D.

2. Patients and families [47, 53]. Three major obstacles at the level of patients and families often make adequate care delivery of the disease illusory: 1. The financial burden [6, 24]: As noted above, most of the minimal costs of adequate T1D care are not covered by public or charitable funding. In low- and middle-income countries it is impossible for many patients to ensure the cost of drugs, particularly insulin, and blood glucose monitoring supplies [42]. Relative to the very low incomes of most people in SSA, the cost of essential inputs and reagents such as insulin and glucose test strips for 4–10 tests per day is prohibitive. 2. Difficulty with adolescent adherence [17]: There is a lack of formal support [24] from families for people living with T1D to have an adequate coping environment and to have a daily assistant. 3. Lack of patient education [9, 45], specifically, the combination of inadequate basic education (subliteracy) and lack of diabetes-specific education (interpretation of blood sugar levels according to the many factors that can influence this, decision-making on insulin doses, carbohydrate count in relation to local food preferences and availability).

3. Sociocultural context [9, 29, 54]. Because the notion of a chronic disease requiring lifelong treatment is often poorly accepted [9], when diabetes is well controlled, insulin treatment is sometimes interrupted [9] because of a belief that the diabetes has been cured. This can lead to dangerously high levels of blood sugars with high risk of development of an acute hyperglycemic crisis (diabetic ketoacidosis). Similarly, many patients do not consider it useful [54] to carry out regular clinical and biological checks, which makes therapeutic adaptation uncertain, particularly insulin therapy. This can be explained by the financial burden, stigmatization, or diabetes distress and burnout. In SSA, weight loss (which in T1D occurs because of hyperglycemia), even if it is voluntary, arouses mistrust because it raises the possibility of HIV infection [29]. Ramadan fasting is another source of glycemic imbalance, especially in insulin-dependent diabetic patients [9]. Although the religion authorizes these patients not to fast, many patients with diabetes continue to fast for fear of judgment from neighbors or family. In SSA, the child with T1D not only remains surrounded by "mystery", but is also the site of projected misrepresentations about the means of being affected, notably through a fear of contagion [9]. Traditional medicine retains an essential place in many African countries. Its practices can be dangerous when patients are advised to abandon effective treatments to resort to empirical drugs, but which have the advantage of being inexpensive and of being part of a pharmacopoeia integrated into the cultural past [9]. These challenges highlight the importance of access to education [55] and information [24] for diabetic patients.

Categorization of strategies implemented in the care delivery of T1D in SSA

The description of the obstacles related to care delivery of T1D in SSA highlights that the obstacles to care delivery of T1D exist at different levels. Several articles emphasized that general and context-specific barriers need to be assessed and analyzed to enable the development of effective strategies in care delivery of T1D in SSA [9, 24, 41, 55, 56]. In addition, the specific context of the patient population, their needs, their medical problems, and their social constraints must be recognized [40]. An overview of several barriers is provided in Table 2, but many other context-related barriers in the care delivery of T1D are conceivable and should be considered during a disease care delivery process in a structured way.

Strategies in the care delivery of T1D in SSA can be broadly classified as workflow-focused [15] or provider-focused [14, 19]. Studies identified a need for children and adolescents with T1D to receive more aggressive care and follow-up and also for more resources to be devoted to this non-communicable disease [39]. This requires functioning and patient-oriented health services with systems oriented towards ensuring good patient and population outcomes. Diseases such as T1D may represent a "marker" condition for effective health care systems, so that the care of patients with T1D could serve as a criterion against which the components of a fully functioning and effective health care system could be judged [15]. A system with such components, (including continuous drug supply, diagnostic facilities, training and retention of health workers, and patient education) is essential in the care delivery of other non-communicable diseases and chronic communicable diseases such as tuberculosis and HIV/AIDS [15]. In this way, attention to the requirements for specific conditions - in this case T1D - can also help strengthen health systems. While HIV and TB have been addressed in this way, T1D remains neglected [38].

Provider-focused strategies seek to minimize barriers at the provider level and create facilitators for adherence to disease-related recommendations. Limited healthcare resources should be focused on managing T1D and other risk factors to prevent complications [14]. This can be achieved using communication strategies to raise awareness of disease care delivery processes. The active participation of patients, families, the media, governmental and non-governmental organizations, and health workers can help overcome certain difficulties [40]. Healthcare workers can effectively coordinate treatment, educate patients on self-care, and play an active role in secondary prevention [57]. For example, training programs such as those in Tanzania [58] or Mali [59] could be deployed to improve knowledge, with materials appropriately developed as guidelines and protocols. It is essential, as pointed out by Datye et al. [19] to "give providers the tools to assess and influence their patients' barriers to adherence shows promise as a strategy that can be used universally by providers to improve adherence and, therefore, glycemic control in youth with T1D”.

Elements of successful T1D care delivery strategies in T1D care delivery in SSA

While strategies in the care delivery of T1D in SSA have been effective in modifying the knowledge and practice of health professionals, the existing evidence also indicates that good and structured care delivery of T1D can improve the health status of patients in SSA [9]. The International Insulin Foundation has suggested 11 key areas where guidelines and good practices need to be addressed in the care delivery of diabetes in general (and that of T1D in particular) in SSA (see panel 1) [60].

Panel

Key areas to address in the care delivery of diabetes (T1D in particular) in Sub-Saharan Africa, as identified by the International Insulin Foundation

• Organization of the health system

• Prevention

• Data gathering

• Diagnostic tools and infrastructure

• Supply of drugs

• Accessibility and affordability of drugs and care

• Training and availability of health workers

• Improvement of adhesion

• Patient education and empowerment

• Community engagement and diabetes associations

• Positive political environment

Panel 1 [60]. Instructions or good practices to be addressed in the care delivery of T1D in SSA.

The review revealed the following aspects as core elements of successful strategies in the care delivery of T1D in SSA (see Fig. 2). Raising awareness of the costs of care can foster the review of national and international diabetes care (including T1D) policies and support programs, as well as dialogue and action by other key stakeholders, such as the industry [8]. Therefore, the provision of educational materials to the population (including written materials, didactic presentations, and interactive lectures) is essential to raise awareness and increase familiarity with disease care delivery methods and requirements. Continuous efforts in the education and training of health professionals and the population are necessary for rapid diagnosis and optimal care delivery of T1D [33, 41] (educational meetings and educational visits to raise awareness, audits and feedback, workshops, and interactive training sessions in small groups). Social interaction through family support is mentioned as a very relevant factor in the care delivery of T1D in SSA. Indeed, the significant interactions between T1D and important infectious diseases highlight the need and opportunity for health planners to develop integrated responses to communicable and non-communicable diseases [6]. This interaction may include educational outreach visits and marketing [45].

Effective interventions build on adolescents' internal and external support (family, technology, and internal motivation) to simplify their diabetes care delivery and provide opportunities for adolescents to share the burden of care [17, 40]. Finally, common themes across successful interventions include perseverance, increased adolescent support (professional and family), and ongoing psychoeducational tools to motivate behavioral changes in daily life that promote adherence and reduce the daily burdens placed on adolescents [17]. These successful interventions include behavioral programs for patients and their family members as well as technological innovations, which aim to remind and inspire patients to follow their treatment regimens [17].

In this review, we distinguished between contextual factors related to health care policies and services in SSA, patients themselves and socio-cultural contexts. Our review of perceived barriers and successful strategies in managing T1D in SSA responds to calls from experts to examine organizational resources (knowledge, attitudes, and beliefs), individual characteristics of healthcare providers, and the perception of actions and strategies in the care delivery of the disease [45]. It identifies shared core elements of successful strategies and puts them in the multilevel complex contexts of care delivery for this costly and under addressed condition. Despite the differences in the classification of obstacles, strategies in the care delivery of disease care delivery in SSA must take them all into account [9, 45].

Moreover, as Fassin mentions in Faire de la santé publique. Rennes, Edition ENSP, 2005, page 37, "health problems are not only biological realities that specialists bring to light, but also epidemiological facts that they construct" [61]. Care delivery of T1D in SSA today is also a cultural construction and an instrument of politics. In our review, the analysis of T1D outcomes according to cultural, political, and social contexts revealed new trends or manifestations in the care delivery of T1D in SSA. These include possible advances in care (combination screening), a loss of interest or new priorities in diabetes and considering local priorities (not to leave them out of the decision-making process since their health and that of their family is at stake). These complex interactions between bio-medical, social, psychological, cultural, political, and economic elements highlight that effective care delivery and/or prevention of T1D in SSA children must adopt multidisciplinary approaches [19, 20]. In addition, the review demonstrated that since the 1990s, different disease care delivery strategies in T1D in SSA related to barriers are being carried out. The predominance of retrospective and cross-sectional data supports the point of view of African researchers described by Ridde et al. [62]. These African researchers said that it is not easy to do prospective surveys due to low financial and material capacities for research [62].

The establishment of effective strategies in the care delivery of T1D in SSA includes important clinical components and requires changes in attitudes and behaviors of health professionals as well as some adaptation of the structural environment [45]. These clinical and structural changes require action in policy, funding, programme implementation, management, and evaluation. Although behavior can change even in the absence of changes in knowledge and attitudes, behavioral changes based on such changes are more permanent. All the obstacles described in this article, both internal and external to the Sub-Saharan context, can influence the knowledge, attitudes or behaviors of health professionals [63]. Health professionals in SSA must be aware of the guidelines on prevention, communication, legislation and have some knowledge of its content. Then, they must be equipped and supported to intervene by implementing effective strategies such as patient and family education. These strategies addressing the clinical and patient levels of the care delivery of T1D in SSA should focus on improving knowledge and also the opportunities, motivations, and capacities to act on this knowledge, as underlined by the Behaviour Change Wheel approach [64]. This requires multidisciplinary approaches and shared commitment from policy makers, managers, clinicians, families, and patients to improve the treatment of patients in SSA according to local contexts. Panel 1 presents a range of strategies to enhance T1D care delivery in SSA, including adherence to health guidelines. For such strategies to be developed and effectively implemented, barriers common across contexts as well as those specific to a given context need to be assessed and removed.

Effects of context on research and practice in the care delivery of T1D in SSA

Observation of disease management in the countries showed that many aspects of research dealing with T1D were being addressed. However, the research priorities of many of the published articles were generic barriers and strategies in care delivery, with little attention to how these cross-cutting issues play out in the specific case of T1D care delivery. Conversely, a second main observation concerns the independent and siloed actions of the different actors in the disease care delivery strategies in SSA. There is a need to coordinate actions, train, educate and build trust in the contexts where actions are implemented for effective care delivery of T1D in SSA - and this must occur in the context of, and integrated with, both cross-cutting issues and contextual and technical specificities of many conditions and priorities. The treatment of T1D in low-income countries must consider the specific context of the patient population, their needs, their medical problems, and their social constraints [40] - in relation to other levels and dimensions of care delivery, prevention, and promotion.

Barriers to the care delivery of T1D in SSA are related to contextual factors at several levels: health system, policy, structure and performance, patient factors, and socio-cultural factors. The core elements of successful strategies for care delivery of T1D in SSA are patient self-management education, staff training, and social support (social interaction). Available evidence indicates that structured care delivery can improve the health of people living with T1D in SSA. Obstacles in the case and population care delivery of T1D and the health of people living with T1D need to be analyzed before strategies adapted to the context and specific target groups can be developed.

PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses

RCTs: Randomized Controlled Trials

SSA: Sub-Saharan African.

T1D: Type 1 Diabetes

T2D: Type 2 Diabetes

UNICEF: The United Nations Children's Fund

Acknowledgements

We would like to thank Sylvie Fontaine, librarian at the paramedical library of the University of Montreal, Canada, for her valuable contribution to the development of the search strategy.

Funding

No funding has been received for the scoping review.

Availability of data and materials

Not applicable.

Author’s contributions

DKHB, CZ and JVO designed the study. DKHB wrote the first manuscript of the study. CZ and JVO critically reviewed the article. All authors have read and approved the final manuscript.

Author’s Information

DKHB is a PhD candidate in global health. CZ is an MD, MPH and PhD in medical anthropology and is Professor of Global Health at the School of Public Health, University of Montreal. JVO holds an MD PhD MMSc and is a clinical specialist pediatric endocrinologist and Assistant Professor in McGill University.

Competing interests

DKHB, CZ and JVO declare no competing in

Consent for publication

Not applicable.

Ethics approval and consent to participate

Not applicable.

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No competing interests reported.

Barriers and strategies in care delivery for type 1 diabetes in Sub-Saharan Africa: a scoping review

Status:

Version 1

Abstract

Figures

Background

Materials and methods

Results

Obstacles and strategies in care delivery of T1D in SSA

Categorization of strategies implemented in the care delivery of T1D in SSA

Elements of successful T1D care delivery strategies in T1D care delivery in SSA

Discussion: Towards the implementation of effective strategies

Effects of context on research and practice in the care delivery of T1D in SSA

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Status:

Version 1