Author: Mapa Mudiyanselage Prabhath Piyasena (United Kingdom)
Co-authors: M Zuurmond, JLY Yip, GVS Murthy
Purpose
Diabetes mellitus (DM) is a global epidemic. Evidence suggests that there will be an increase in the number of people with DM (PwDM) globally with a higher increase in low and middle-income countries (LMIC). One major complication of DM is diabetic retinopathy (DR), and this leads to visual impairment and blindness if not detected and treated on time. One major barrier to uptake of DR services is lack of knowledge and awareness of DR among the PwDM. Most studies have shown that lack of knowledge and awareness about DR and poor understanding of the need for regular follow-up are major barriers to access. Further, asymptomatic early stage of DR is a hindrance to access. Therefore, health education (HE) about DR must be a key element of any screening strategy for DR and such interventions are lacking in Sri Lanka.
Setting/Venue
The overall purpose of this study was to develop a relevant, acceptable and comprehensible HE intervention (HEI) for the Sri Lanka context to improve referral uptake at the ophthalmologist’s clinic when PwDM referred from the diabetic or medical clinics. This was part of a larger feasibility study to develop an integrated DRS program in the Western province of Sri Lanka in a doctoral research degree project and this study was conducted in a public sector tertiary level institution.
Methods
A local context specific HE intervention (HEI) was developed by adopting available resources and incorporating views from PwDM and key stakeholders. Four sessions of participatory workshops with PwDM (20 Sinhala and 13 Tamil speaking) and two stage 12 stakeholder interviews were conducted to both develop and pre-test the material. We originally developed videos and leaflets in three local languages as HEI, and delivered at a medical clinic to a sample of 45 PwDM identified as having DR. Semi-structured interviews were conducted after 4 weeks, to evaluate the acceptability and comprehension of the HEI. Additionally, nine interviews were conducted with clinical providers to explore process issues related to delivery of the HEI. Data analysis was conducted using thematic analysis. The participatory workshops and semi-structured interviews (SSIs) were audio recorded and for stakeholders’ meetings detailed notes were taken. A simple thematic analysis was undertaken which included covering themes of comprehension, readability and cultural acceptability. The analysis was conducted in local languages by experienced sociologists. Recordings were transcribed, and together with field notes, were coded in Sinhala and Tamil by local sociologists and then cross checked by the lead sociologist and by the lead investigator. Final themes were translated into English.
Results
In the developmental phase, a total of 96 HE resources were initially identified for improving DRS uptake (74 printable and 22 non-printable) and a final selection of 33 resources were then reviewed for adaptation to the local context. Overall, there were low levels of knowledge of DR and DRS, a lack of perceived threat of DR blindness, combined with DR not being seen as a life-threatening condition, in particular during the asymptomatic phase. The poor information on referral pathways were key elements identified from the workshops with PwDM. The stakeholders prioritised the importance of using simple language, and the need for emphasis on improving understanding about the asymptomatic phase of DR. The overall acceptability of the HEI material was satisfactory, although there was some difficulty with interpretation of medical images. Although PwDM liked the ideas of the video, the leaflet was seen as a more practical option, given the busy clinic environment. The key issue was both formats required interaction with the provider, in order to support understanding of the messages. The physicians who delivered the HEI stated that major practical issue was lack of time and technical facilities in the clinic.
Conlusions
The development of HE material in DR is a complex process, requires adaptation and development suitable to the local context. The process of adapting the health educational material is not simply translation into the appropriate language but rather an individualised tailored approach in different health services to meet the needs of variuos patient communities. Socio-cultural norms should be considered when defining the actionable steps. We can conclude that there is a satisfactory level of acceptability for this HEI and to deliver at a medical clinic setting would require further development of human resources and infrastructure appropriate to the intervention. Recommendations are improve functional health literacy by further simplification of the resource, including minimal use of medical jargon and strengthen the interactive use of HEI, with a skilled educator to discuss, clarify and counsel.
Financial Disclosure
None to disclose
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