A needs assessment of people living with diabetes and diabetic retinopathy

BACKGROUND: The Kilimanjaro Diabetic Programme was initiated in response to the needs of people living with diabetes (PWLD) to identify barriers to uptake of screening for diabetic retinopathy, to improve management of diabetes, and establish an affordable, sustainable eye screening and treatment programme for diabetic retinopathy. Intervention Mapping was used as the framework for the needs assessment. METHODS: A mixed methods approach was used. Five psychometric measures, Diabetes Knowledge Questionnaire, Diabetes Health Beliefs, Self-Efficacy scale, Problem Areas in Diabetes scale, and Hopkins Scale Checklist-25 and a structured interview relating to self-efficacy, addressing disclosure of living with diabetes and life-style changes were used to triangulate the quantitative findings. These were administered to 26 PWLD presenting to rural district hospitals. RESULTS: The interviewees demonstrated low levels of perceived stigma regarding disclosure of living with diabetes and high levels of self-efficacy in raising community awareness of diabetes, seeking on going treatment from Western medicine over traditional healers and in seeking care on sick days. Self-efficacy was high for adjusting diet, although comprehensive dietary knowledge was poor. Negative emotions expressed at diagnosis, changes in life style and altered quality of life were reflected in high levels of anxiety and depression. CONCLUSIONS: Low levels of stigma surrounding living with diabetes were linked to a desire to raise community awareness of diabetes, help others live with diabetes and to secure social support to access hospital services. Confusion over what constituted a healthy diet showed the importance of comprehensive, accessible diabetes education, essential to ensuring good glycaemic control, and preventing diabetic complications, including diabetic retinopathy. Low levels of self-efficacy along with high levels of anxiety and depression may have a negative impact on the uptake of screening for Diabetic Retinopathy. The findings of this needs assessment led to the planning and delivery of a comprehensive health intervention programme for PLWD in Kilimanjaro Region. The programme has provided them with support, resources, education, and screening for diabetic retinopathy at the regional hospital and at district level with mobile digital retinal cameras, an electronic diabetic database and computerised follow up to ensure continuity of care.