Process of adaptation, development and assessment of acceptability of a health educational intervention to improve referral uptake by people with diabetes in Sri Lanka

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) [1]. One major complication of DM is diabetic retinopathy (DR) and this leads to visual impairment and blindness if not detected and treated on time. The “St Vincent Declaration” stated that all nations should plan efforts to control the complications of DM in their populations [2]. Despite current efforts, DR screening (DRS) coverage is low in many settings. As an example, in USA only 33–68% of PwDM underwent an annual fundus examination [3] and in UK approximately 80% attended for DRS, following an invitation [4]. Therefore, screening uptake is not even optimal even in high income countries (HICs), despite availability of free services. Inequity had been observed in DRS services delivery, even in HICs [5].

A review conducted on interventions to promote DRS, highlighted the need for strategies to improve PwDM’s awareness on DR [6]. Studies show that low functional health literacy [7], language barriers such as the lack of provision of health education (HE) in local languages and dialects and suitability of the content of provider-patient communication should be considered in effective management of chronic diseases like DM [8, 9]. Uptake of DRS depends on the knowledge, attitude and practice of PwDM [10, 11]. 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 [12, 13]. Further, the asymptomatic early stage of DR is a hindrance to access [14]. Therefore, HE about DR must be a key element of any screening strategy for DR [15].

In Sri Lanka, despite free eye care being provided through the public sector, the uptake of DR services is low. The current method of detecting DR is opportunistic screening by ophthalmologists following referral from general physicians or when PwDM present for other eye problems. The highest recorded prevalence of DM of 18.6% (95% CI 15.8–21.5%) in Sri Lanka is in the Western province [16], where a situational analysis showed a significant level of unmet need [17]. A qualitative research study on barriers to accessing services in the Western region also found that knowledge and awareness of DR and DRS among the PwDM was low (under review; service user perspectives - BMC Tropical Medicine and Health and service provider perspectives - BMC Health Services Research).

Health education forms an essential component of the health promotional activities for chronic diseases such as DM [18]. A review on eye health promotion in low income settings stated that behaviour change HE, improvement of access to services and effective advocacy are the major components to address control of blindness [19]. In this approach, reviewers described HE as the “back bone” of the health promotion efforts [19]. One major challenge is the translation of behaviour change principles into practical environments attaining the expected outcome [20]. There are many influences at community level such as culture, economy, traditions and social norms that would affect the behaviour of a person [19]. A systematic review of studies which have assessed effectiveness of interventions to improve DRS stated that increasing PwDM awareness on DR can improve the uptake of DRS [21]. Therefore, provision of information through HE material would be an important component in any health promotional strategy to improve uptake of DRS services.

It is a descriptive qualitative study which details the process of the development and field testing of a relevant and acceptable HEI. The different phases are described in Fig. 1. For the stages of consultation and revision of the HEI, we adopted a participatory approach, to promote greater acceptance and relevance of the material, in line with general guidance on community based participatory research [23].

In the developmental phase, a total of 96 HE resources were initially identified for improving DRS uptake (74 printable and 22 non-printable). Sixty-three sources were reviewed for adaptation after exclusion of material based on the relevance (Additional file 1, Table 2), and a final selection of 33 resources were then reviewed for adaptation to the local context. A total of 16 key themes were identified, which needed to be addressed in the adaptation and development of HEI (see Table 4).

Thirty-three PwDM (20 Sinhala speaking, 13 Tamil speaking) attended participatory workshops. 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. Commonly, for example, cataract surgery or the provisions of spectacles were understood to be the solution for all eye health problems. The use of medical terms, often in English, was also identified as a barrier to their understanding, including terms such as ‘retina’ and ‘pupil dilation’, although these terms could not be easily translated into the local languages. Knowledge about treatment options in government hospitals was also limited, combined with poor understanding of the referral pathways, and of the need for regular screening. The confusion about referrals and forgetfulness about appointments was often exacerbated by the lack of a printed referral form, and/or lack of information available in the local languages. Another barrier to uptake of services was negative attitudes about very long waiting times at clinics which deterred patients from regular screening. Fear about the procedures, such as pupil dilation, was another barrier.

In terms of environmental factors, social norms emerged as a key theme, which influence management of DM. Some PwDM practiced indigenous medication, whilst a common belief was also that blindness was an inevitable part of ageing, karma or faith which was not avoidable and therefore difficult to treat. The decision making on accessing services and requirements of an escort, especially for women, mostly happened at the family level, in what is a patriarchal society system. Therefore, development of HEI needed to be family-centred and any materials to be developed in a way that it would be easy to share.

In terms of readability of the HEI a common request was for clear and colourful images and to use large page size and font size for printable material. Stakeholders identified that an animated video could enrich understanding of biological changes to the eye. In terms of the mode of delivery there was an overall preference from the Tamil speaking groups for the video, whilst in contrast the Sinhala groups in general expressed a preference for printed reading material. All groups agreed that the medical clinic provided a useful space to deliver this HEI, whilst waiting for appointments.

This study showed that the process of adapting HE material is not simply translation into the appropriate language. Instead adopting a participatory process, and working with PwDM and with providers, we identified important content and process issues, necessary to make the material relevant and acceptable, with some lessons learnt for scaling up. The key findings were, PwDM had low levels of knowledge and awareness on DRS, referral pathways and follow ups. Stakeholders prioritised the importance of using of simple language and need of highlighting the importance of DRS in asymptomatic phase. In the field testing we found that most of the PwDM could comprehend the content with overall good understanding of the key steps, except on a few occasions among Tamil and Moor ethnic groups. Additionally, we observed that there were technical and human resources constraints to deliver the HEI at a medical clinic setting. Our HE video and leaflet had satisfactory level of acceptability to the PwDM based on their verbal responses. This HEI would have a greater potential of using as an HEI to improve the referral uptake following further refinement according to the contextual requirements.

The World Health Organization (WHO) Shanghai Declaration stated that health promotion should be an essential component in all health systems to have an equitable access [26] and eye health promotion consists of a mix of HE, services improvement and advocacy [19]. In terms of DRS services uptake of screening and treatment is low, therefore an effective HE strategy is one essential component to ensure equitable access [19]. This is one of the first studies to describe the process of adaptation, development and assessment of an acceptable HEI on DR in Sri Lanka.

The use of participatory methods targeted at the intended community has been shown in a study to be an effective way to develop material which has a high level of acceptability [27]. This method enabled us to tailor the material to be more culturally sensitive, for example in terms of understanding any particular needs of different ethnic groups. The importance of culture sensitive adaptation of the material compared to the conventional translated material has been described in a controlled study conducted in a high income country migrant populations and showed that adapted material were significantly more useful than translated versions [28]. A study on development of HE material in hypertension for an Indo-Asian community stated that active participation of the targeted community was helpful in developing acceptable material [27]. We identified that the existing resources on DR were developed according to the various contextual requirements in different contexts.

Our study showed that overall knowledge on DM and DRS was low, and this needed to be addressed with the HEI. A study conducted in South India, in a population similar to Sri Lanka showed that only about 40.7% of PwDM had good knowledge on DM and DR and 9.6% has undergone DRS [29]. In addition, we identified various attitudinal and behaviour patterns such as fear, lack of understanding between DRS and routine eye check-up affects uptake. Similar findings were reported in other studies on barriers to uptake DRS [30, 31]. In addition, we observed that PwDM were reluctant follow up with screening and treatment when there was no threat to sight or during asymptomatic stage. A similar challenge was described in a systematic review of HE interventions to improve the adherence to glaucoma medication [32].

The field-testing phase showed that despite high level of literacy in Sri Lanka [33], the functional health literacy was low among some participants, and in particular there was difficulty in interpreting and understanding medical jargon and biological pictures. The WHO highlights that HE is necessary to improve functional health literacy, which in turn would reduce inequalities to access [18]. A systematic review on assessment of readability of ophthalmology HE material showed that most of the eye care HE material required high level of literacy for understanding [34]. Therefore, any HEI needs to be further developed in a way that is understandable to wide range of PwDM with various levels of functional health literacy. Another key element identified in our study was necessity of using locally derived, simple, and understandable terms (i.e., retina, diabetic retinopathy, pupil dilatation, vitrectomy etc.) in different dialects, as described in a study on glaucoma HE in Nigeria [35]. This shows that working on multiple languages requires a lot of competency in translation and back-translation, to maintain the integrity of the HEI.

Our study showed that socio-cultural adaptation of the material is a crucial factor to improve uptake, in a patriarchal society like in Sri Lanka. A study from Sri Lanka showed that PwDM behave with regard to DM based on various socio-cultural beliefs [36]. Therefore, gender and culture sensitive HE strategies should be developed, where females are mostly not involved in decision making [37]. A similar finding of the importance of family in making decisions and gender role of women on service uptake has been described in a cataract surgery uptake study done in Tanzania [38]. We therefore developed the HEI in a way that it could be shared with family members, although in practise there was little evidence of sharing.

Our study showed an overall satisfactory level of acceptability for the leaflet and video material. We showed and expressed preference among the participants about the use of a video during the participatory development phase. A systematic review of assessing the efficacy of video-based HE to modify behaviour in handling health related issues showed that videos showing actual people can be more effective than graphical presentation [39]. However, the field-testing phase indicated that video used in the clinic was problematic for several reasons. It might be that finding an alternative way to present the video, for example using a smart phone / social media might be a more pragmatic approach which also offers wider coverage, as piloted in a study conducted in a similar community in South India for stroke survivor education [40]. We identified that either of the material may be insufficient as a stand-alone HEI and the video and the leaflet should both be more complementary to each other.

One of the key findings in our study was that HE benefits from a more interactive approach where there is an opportunity to discuss the material with a provider and seek clarification. The clinic work load [41], lack of prioritising the HE at clinic setting [42] and lack of training of human resources [43] have been described as barriers to HE in other studies. In our study the lack of physician time was identified as major barrier and highlighting the need to consider task sharing or shifting and finding other staff or expert patients who might play an important educator role. The need of a health educator for a busy clinic has been suggested in health promotion study done in USA on Glaucoma [44].

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.