Barriers to – and enablers of – diabetes retinopathy behaviors manifest in a multifaceted manner for women diagnosed with diabetes in Bangladesh, in terms of the uptake of DR screening and following referrals to treatment with injection, laser, and surgery. In comparing responses, we determined that the largest barriers to seeking DR screening and treatment were perceived access, perceived self-efficacy, perceived social norms and cues for action among the study population. Other barriers were related to perceived negative consequences of receiving DR treatments, and beliefs about potential side effects (Fig. 1).
Specifically, access to DR services were impacted by behavioral and socio-cultural constraints such as restrictions on women traveling alone, the need for managing the household duties in their absence, and the lack of resources for paying transport costs (14). Residing a great distance from the DR health facility to health imposed further challenges. This finding is supported by the average distance (Table 1) between respondents’ home to health facilities. This finding is aligned with a qualitative study in USA (24).
Perceived social norms were found to be a powerful determinant of DR related health seeking behaviors in this study. Women reported that their decision to seek treatment was greatly influenced by the male members of their family such as their husbands, sons, and sons-in-law. Similar results were found in a Cambodia study, where women were found to have less agency over their own health (14). This agency was reflected in our study not only through their access to healthcare, but lack of access to information such as the location of the center and requiring approval of household members in a few cases. This Cambodia study reported that, these issues were considered as enablers for those people who attended in the hospital for seeking eye health services. Studies from China and other South Asian countries also found family support to be an enabler for eye health services (16, 25).
Financial constraints depended not on the household income, but rather on the woman’s control over the household income (14). These constraints further diminished the confidence of these women in seeking service on their own. A gender analysis on eye healthcare services in Southern Bangladesh found that the barriers women face are often deep-rooted in women’s low social and economic position both within the family and the overall society (19). This barrier further impacts on their out-of-pocket payment costs for pre-treatment tests which should be done in outside of the study healthcare facilities in this study.
A major cluster of barriers was identified around the management standards and quality of service provisions, which impacted on perceived self-efficacy to receive the treatments. Long waiting times for diabetic patients are considered harmful as patients are forced to go long hours without food (26). Cancellations of treatment appointments were hard for those who had to travel a long distance, doing jobs or had a partner with a job, household workload. It became difficult for them to manage multiple days off for the rescheduled appointment, implying a further loss of income for the days not worked. These findings complement those found in the Global DR Barometer study (12). Poor management of the hospital premises (due to overcrowding, limited seating, long queues for booking appointments – see Supplementary file 2), and frequent changes of appointment dates, made it difficult for women to access care. A few of these issues were addressed in another study conducted in Bangladesh (6). In addition to these barriers, as described in other international literature (16, 27, 28), in this study difficulty in remembering the date when services should be accessed was another major constraint reported by the study population.
This study also reported that some perceived negative consequences of DR treatments (such as pain or a burning sensation) were associated with not seeking care. These expected consequences along with poor health literacy related to DR, are similar to what has been found in lower middle income countries (29–31). Other studies have mentioned patients’ lack of understanding of vision loss due to DR, its consequences and the necessity of preventive care, and how those have proved to be major deterrents to screening uptake (14, 19, 32). In rural Bangladesh, patients who believed they were at risk of DR, were nine times more likely to uptake DR screening than patients who believed they would not have DR, and that any vision loss is due to ageing (11). In this study, Doers were 5.5 times more likely to say that there was no risk of losing their eye sight in the future. Several other studies have also identified low patient health literacy as a major barrier to non-participation in DR screening programs (8, 33).
Aligned with international literature (34, 35), the Doers in this study significantly reported that service providers’ (doctors and nurses) supportive behavior made it easier for them to attend the hospital for DR screening. This indicates, the absence of such supportive attitudes from the healthcare providers might restrict patients to perform DR behaviors. A Dutch on general practices concluded that a main barrier to DR services (such as screening) was the failure of a particular doctor, intern or nurse had not recommended it to the patients (36).
Limitations
This study has several limitations. Firstly, given that this study was only done in a limited urban area in Bangladesh, the results should not be generalized countrywide. However, as the study included both Doers and Non-doers of each behavior, it was possible to identify barriers and enablers associated with each of the four DR behaviors. Secondly, while the questionnaire was developed based on twelve behavioral determinants, and many of the questions have been used in many other published studies (including in Bangladesh), it did not undergo formal reliability checks. Finally, due to the nature of this research, the study did not consider service providers’ perspectives on the results which might add value to the study.