Socio-demographic data 33 individuals with T2D from three peri-urban municipalities of the city of Cochabamba participated in this study. Participants were primarily women (76%), over 50 years old (84%) and did not complete secondary education (67%). Most of the participants worked either in the informal sector (40%) or were unemployed (51%). These and other socio-demographic data are shown in Table 1.
Table 1
Socio-demographic data participants
| n (%) |
Sex | |
Male | 8 (24%) |
Female | 25 (76%) |
Age | |
41–60 years | 17 (52%) |
61–80 years | 16 (48%) |
Spoken language | |
Spanish | 33 |
Quechua | 29 |
Aymara | 2 |
Max. level of education | |
No education | 9 (27%) |
Primary education | 13 (40%) |
Secondary education | 9 (27%) |
College/ university | 2 (6%) |
Occupation | |
Working in informal sector | 14 (42%) |
Working in formal sector | 2 (6%) |
Domestic work | 11 (34%) |
Retired | 6 (18%) |
Pharmacological therapy | |
Oral glucose lowering drugs | 11 (33%) |
Oral glucose lowering drugs + insulin | 11 (33%) |
Insulin | 9 (28%) |
None | 2 (6%) |
Number of years diagnosed | |
1–10 | 13 (39%) |
> 10 | 20 (61%) |
Living situation Alone With spouse/family | 4 (12%) 29 (88%) |
Footnote: n = absolute number
Identified domains and clustered structuring needs of people with T2D
In total, participants generated 156 original statements that were summarized in 72 conceptually different needs. These needs were rated by the participants and sorted afterwards, resulting in a concept map with 10 different clusters as shown in Fig. 2. Revising the clusters, some statements were moved to more appropriate clusters, improving their coherence, resulting in the complete redistribution of the 10th cluster. The remaining nine clusters were grouped in four overarching domains. The four domains with their underlying clusters and corresponding importance- and presence-scores are shown in Table 2. Rating scores are shown with an accuracy of two decimals, while in the written results, ratings were rounded. A 3,33 on importance for example, was rounded to 3, seen as ‘important’, while a 3,66 was considered ‘very important’. In the results, the different clusters are indicated by a number between brackets, which is also the cluster number on the concept map.
Table 2
Domains and clusters to achieve people-centred care for type 2 diabetes in Cochabamba, Bolivia
| Importance | Presence |
1. SELF-MANAGEMENT (14) | | |
1. Self-Management Practices (6) | 4,55 | 3,76 |
Consuming plants, herbs and other natural remedies | 4,58 | 4,03 |
Maintaining a register for daily follow up of foods, symptoms, blood sugar… | 4,32 | 2,84 |
2. Knowledge on Diabetes Management & Health literacy (8) | 4,74 | 3,23 |
Having the possibility to measure the sugar level periodically | 4,91 | 3,22 |
Knowing the different types of medication and its’ side-effects | 4,61 | 2,96 |
2. HEALTHCARE PROVIDERS (18) | | |
3. Social and Professional Competences (12) | 4,72 | 2,71 |
Healthcare personnel reduces fear of the condition through explaining the condition (psychological assistance) | 4,78 | 2,27 |
A physician who knows the medical and social history of the patient | 4,68 | 3,20 |
4. Patient Education (6) | 4,80 | 3,00 |
Healthcare personnel teaching the patient about what is diabetes | 4,76 | 2,81 |
Having information and orientation on healthy foods during medical attention | 4,86 | 2,83 |
3. HEALTH SYSTEM (25) | | |
5. Healthcare Resources and Health Insurance (11) | 4,70 | 2,82 |
Having hospitals close by that accept you when you need urgent medical care | 4,94 | 3,29 |
Having enough physicians and medical material in the region | 4,87 | 2,87 |
6. Access to healthcare services (8) | 4,77 | 2,45 |
Waiting little time in line for medical assistance in healthcare facilities | 4,87 | 1,97 |
Having access to consults with a nutritionist | 4,68 | 1,47 |
7. Home and community care (6) | 4,20 | 1,83 |
Community and/ or home-visits of healthcare personnel | 4,66 | 2,13 |
Having first aid or a physician on duty in the community | 4,88 | 1,69 |
4. COMMUNITY (15) | | |
8. Family and community participation (6) | 4,70 | 2,07 |
A community council engaged in enhancing health of its’ inhabitants | 4,69 | 2,03 |
People with knowledge on good nutrition and foods in the community who teach how to eat in a healthy way | 4,69 | 1,53 |
9. Social and Environmental determinants of Health (9) | 4,90 | 2,85 |
Having good provision of healthy foods in the neighbourhood | 4,94 | 2,88 |
Having streets without dogs so you can walk and exercise in a safe way | 4,75 | 1,88 |
Four domains containing nine clusters that group 72 needs for people centred diabetes care. For each cluster two needs are presented.
The number between brackets refers to the number of statements in each domain or cluster. The Bold numbers are the means of all the statements in each cluster.
Self-management
The needs related to self-management were grouped in two clusters: ‘Self-management Practices’ and ‘Knowledge on Diabetes Management & Health literacy’.
The self-management practices (1) used in the community were perceived as essential (Importance-average = 4,55) to live with T2D on cluster-level. The statements with the highest importance and presence scores were ‘having faith in God or religion in general’ (Importance = 5,00; presence = 4,85) and ‘taking indigenous plants, herbs and other natural remedies’ (Importance = 4,58; presence = 4,03).
The second cluster on Knowledge on Diabetes Management & Health literacy (2), was considered as essential (Importance-average = 4,74) but only sometimes present (Presence-average = 3,23). Knowledge on glucose-levels (Presence = 3,19) and different types of medication and their side-effects (Presence = 2.96) was particularly low. Remarkable was the generalized lack of knowledge on how to access the healthcare system and obtain free services and medication (Presence = 1,91).
Healthcare Providers
The clusters related to the Healthcare providers were ‘Social and Professional Competences’ and ‘Patient Education’.
Social and professional competences (3) of healthcare providers were rated on cluster-level as essential (Importance-average = 4,74), yet only sometimes present (Presence-average = 2,84), like the need to trust the health provider (Importance = 4,40; Presence = 3,36). Healthcare providers failed in reducing fear and distress (Presence = 2,27) and were barely considered to be aware of family-problems (Presence = 1,63). Furthermore, health providers’ capacity to communicate in the local indigenous language was highly appreciated, yet often absent (Presence = 2,67). Great importance was attached to monthly check-ups, yet, these only occasionally took place (Presence = 3,15). Furthermore, participants expressed an urgent need for uniformity of diagnoses and treatment plans by different physicians for the same health problem (Importance = 5; Presence = 2,11).
Receiving education (4) from healthcare providers was rated as essential (Importance-average = 4,76), however only sometimes available (presence-average = 2,75). Healthcare providers seldom educated patients on T2D (Presence = 2,81), nor on medication use and alimentation (Presence = 2,50 − 2,83). Although highly valued, the need to educate family-members was rarely fulfilled (Presence = 2,50). It was remarkable that, although it was rated as essential, education on commonly used plants and herbs was nearly inexistent (Presence = 1,78).
Health System
The clusters ‘Healthcare Resources and Health insurance’, ‘Access to healthcare services’ and ‘Home and community care’ were grouped under the domain health system.
Aspects related to healthcare resources and health insurance (5) were rated as essential (Importance-average = 4,70), but only occasionally present (Presence-average = 2,82). Participants experienced a shortage of physicians (Presence = 2,87), medical supplies (Presence = 2,87) and medications such as insulin (Presence = 2,67). Affordable transportation to healthcare facilities was highly valued and generally available (presence = 3,88), but transportation for urgent medical assistance, such as an ambulances was practically unavailable (presence = 1,84). Health insurance was rated as very important (Importance = 4,32), however rarely perceived as available (Presence = 1,66).
The cluster, access to healthcare services (6), was rated as essential (Importance-average = 4,77), however needs were mostly unfulfilled (Presence-average = 2,45). Participants experienced long waiting times (Presence = 1,97) and a lack of guidance by their general practitioner in finding access to specialist care (Presence = 2,30). Moreover, even though perceived as essential, availability (Presence = 2,96) and affordability (Presence = 2,38) of specialist care in-hospital was perceived as deficient. Access to urgent medical care was particularly lacking (Presence = 2,23).
Home and community care (7) was rated as very important (Importance-average = 4,20) though inadequate (Presence-average = 1,83). A first aid post or a physician on duty (Importance = 4,69; Presence = 2,30) and community or home-visits by healthcare professionals were highly appreciated but practically unavailable (Importance = 4,66; Presence = 2,13). Paramedical care such as physiotherapy (Presence = 1,28) and social services (Presence = 1,26) were desired, but non-existent in the community.
Community
The importance of community was described in two clusters: ‘Family and community participation’ and ‘Social and Environmental Determinants of Health’.
Family and community participation (8) was rated as essential (Importance-average = 4,70) but barely present (Presence-average = 2,07). Experienced support by fellow community members (presence = 2,06) and engagement of the community council in enhancing people’s health was very weak (Presence = 2,03). Furthermore, activities and gatherings for the elderly in the community (Presence = 1,63) and periodical meetings with people with diabetes and their families (Presence = 1,59) were requested but unavailable.
Needs within the cluster social and environmental determinants of health (9) were rated as essential (Importance-average = 4,90), yet only sometimes fulfilled (Presence-average = 2,85). At the one hand, most participants indicated having an adequate supply of basic utilities such as water and electricity (Presence = 4,41). On the other hand,
availability of asphalted well-lit streets (presence = 2,91) and healthy foods in the neighbourhood was poor (Presence = 2,88). There was an urgent need for security in the community (presence = 2,28), which was impeded partially due to the presence of stray dogs.