The main objective of this study was to identify what people with T2D in Cochabamba, Bolivia needed to maintain or improve their health, and what resources they relied on, in order to develop contextualised people-centred diabetes care.
A broad range of needs was identified, but many needs remained unmet. Expertise of healthcare providers at the primary health care level seemed inadequate, leaving patients with unfulfilled educational needs. However, support by healthcare professionals is pivotal in diabetes self-management education [26], leading to improved HbA1c-levels [46,47], self-efficacy and empowerment [48], healthy coping [49] and reduced diabetes-related distress [47]. Moreover, self-management education was impeded due to poor communication skills of healthcare providers through both linguistic problems, with failure to communicate in the indigenous language [50], and the lack of a trustful continuous relationship. The latter has been shown in literature to be a condition for effective communication and interpersonal care [51] that facilitates health promotion [52-54] and metabolic control [55,56]. A patient factor making health education challenging was low literacy levels. Less than one out of three participants finished secondary education urging for a contextualised strategy to improve health literacy which is essential for access to health care, glycemic control, prevention of retinopathy, and self-perceived health [57,58].
In March 2019, the ‘Sistema Unico de Salud’ was introduced, a universal health system intended to provide free basic health care including periodic controls of glucose-levels, education on diet and exercise in PHC, pharmacological treatment with glibenclamide and metformin and yearly check-ups with an ophthalmologist [59]. Before this health care reform, free basic health care was limited to people over 60 [60]. Despite the prior and current universal health system, perceived access to basic health services [54] including physicians, medical supplies and essential medications was lacking. This presumably generates care seeking in the private healthcare system, putting a strain on household budgets due to higher out-of-pocket expenditures [61]. Reasons for this flee to private health care in previous studies, as well as reflected in this study were better access, shorter waiting times, better confidentiality, distrust in government institutions and better accordance to people’s needs in general [62]
Another identified need was the lack of support by fellow-community members despite the positive effect of community-support on diabetes management [63,64]. Although a Bolivian law obliges community participation in local healthcare design [59], community members and local authorities were perceived as insufficiently engaged in health care. As such, opportunities for the community and healthcare team to co-create relevant actions on health and its determinants were missed [65]. Beside these participative needs, several needs were mentioned regarding the physical living environment, and confirmed by existing literature such as the impact of green and recreational space [66,67], traffic noise [68,69] and neighbourhood safety. Certain aspects such as the lack of healthy foods and the presence of stray dogs, impairing the possibility to exercise, were prominently mentioned. People-centred, as well as community oriented PHC can, with their focus on social and physical health determinants, serve as a model to consider the environment and include community members in healthcare design [65,70].
Beside needs, resources were identified by the participants. Support was perceived both by family and religion. The latter has also proven effects on glucose-levels, coping and self-management [71,72]. Most participants had knowledge on the use of plants and herbs with potential of improving diabetes management such as ginseng [73], ginger [74] and aloe vera. Aloe vera has shown to reduce blood glucose levels, decrease blood lipids and promote healing of wounds such as venous ulcers [75]. Furthermore, lesser known plants were used by the study population, such as yacon, a root originated from the Andes known for its’ hypoglycemic properties, confirmed in several clinical trials [76,77]. Reliance on these plants and herbs is interwoven with indigenous culture and must be better articulated with the Bolivian healthcare system that enacted a law on inclusion of traditional medicine [78,79]. This articulation can promote collaborative care, wherein expertise of patients and expertise of healthcare providers is combined [23], a type of care that was not reflected in this study. Additionally, understanding people’s resources is needed for the design of an effective self-management plan in line with existing practices, knowledge and literacy levels [60,80-82].
This research adds to an increasing body of evidence on needs and experiences of people with T2D [83-87], of which most studies were performed in HICs. Results of this research coincided partially with previous research such as the need for support from healthcare professionals [83,85-94] and the role of family and social support in diabetes management [83,85-87,89]. Other results varied from previous research. First, contextualised information and education on T2D was almost absent and urgently needed [95,96]. Causative factors for this lack of education could be the substandard training of health providers on T2D at the primary health care level and the heavy burden to educate people with low (health) literacy from different socio-cultural backgrounds in a low-resource setting. Second, many experienced distrust in healthcare institutions, resulting in non-adherence to therapies or lifestyle advice and poor self-management [97,98]. Western medicine is frequently felt as imposed, and poorly culturally embedded [99]. Inclusion of traditionally widely used plants and herbs in health care, and communication in the local indigenous languages could promote trust. Third, the lack of supplies and medications such as insulin was experienced, while in HICs these are readily available [100].
This study led to a comprehensive exploration of needs of people living with T2D in a LMIC, which is unseen in previous studies. Because of the very broad and positively formulated seeding question: ‘Thinking as broadly as possible, what is needed to maintain or improve your health or the health of other people with type 2 diabetes in your community?’, many health needs were identified such as ‘having faith in God or religion’, going further than individual needs mentioned in the doctor’s office. As such, wider community needs have been identified, which is pivotal for planning and evaluation of health services. Health care planning based on these results goes further than traditional planning based on ratios of non communicable diseases by understanding the roots of health problems [101]. The WHO (2001) affirmed the necessity of this community health needs assessment in the planning and delivery of effective care, ensuring fair allocation of scarce resources [102].
It is important to note that this research had shortcomings. Because of the time constraints, the sample size of this study was relatively small and convenience sampling was used. This hindered in making analyses based on, for example, socio-economic status, gender, language, cultural characteristics, insurance scheme and time of diagnose; for example, women (75%) were overrepresented in this research although experiences of men and women with T2D are shown to be different [101]. While the indigenous population was overrepresented due to the recruitment in the public health system, the recruitment during an outreach project that assists deprived populations, and possibly due to a higher diabetes prevalence in indigenous populations in the areas under study, the perspective of people who only speak local indigenous languages was not explored. Although the modulation of the original concept methodology enhanced the generation of statements, it impeded group discussions that could have changed the structuring and interpretation of the concept map. In future studies, support of an experienced sociologist or anthropologist and translator is desirable to facilitate the group process and the inclusion of people that only speak indigenous languages. Additionally, the inclusion of all relevant stakeholders is recommended in order to get a comprehensive understanding of what is needed for optimal diabetes management in Bolivia, and LMICs in general.
Figure 3: People-centred diabetes care model for recently urbanized regions in Cochabamba.
Interdependent interventions at the level of the community, the health system and human resources based on the identified needs and resources in this study are presented. T2D= Type 2 diabetes; PHC= Primary health care.
Findings from this research, illustrated in Figure 3, show that the central element for a people-centred diabetes care model is reaching common ground and partnership between health care providers and the community, supported by sound health policies and health supplies, as a foundation to enhance individual and community health literacy [103]. While in Bolivia adequate health policy [37,78] is in place, a diabetes guideline and medical supplies at the PHC level are lacking. Their presence could motivate primary health care providers to advance their knowledge and skills to manage T2D and build community partnership. As illustrated in previous research, nurses can play a crucial role in this partnership [101] and the role of community health workers must be explored [13]. Other disciplines like nutritionists, physiotherapists and social workers, as indicated by the participants, are also needed for a comprehensive needs-based health care. Although, to bridge the historical divide between biomedical medicine and traditional (indigenous) medicine as well as the traditional paternalistic health care provider patient relationship [104], professionals of other disciplines like sociologists, anthropologists and communicators are also desirable. The shift towards a primary health care led diabetes care model supported by an inter professional team and a better understanding of commonly used plants and herbs is instrumental in the design of people-centered health care and health education for people living with T2D in recently urbanized regions of Cochabamba and probably beyond.