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Table 4 Main themes and source of information for development of the HE material development

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

Theme/ Subtheme and Source of Information Illustrative Quotations Implication for Development of HE Material
1. Main domain- Individual level-personal factors
 Knowledge, expectations and attitude
  1.1 Lack of knowledge on DR &DRS
SIs a
-Lack of biological knowledge of the eye, DR affects the back of the inside of the eye and changes are not visible from outside.
-Lack of understanding of early asymptomatic stage.
PWs b
-Necessity of providing distinct information to make PwDM aware of DR.
“We don’t know about eye issues that can occur with diabetes, hospital staff need to make us aware about that” [PwDM_PW]
“We don’t know about DR blindness or that effects of diabetes on the eye leading to blindness” [PwDM_PW]
-Inclusion of information on DM caused by high sugar levels in blood, this will lead to changes of blood vessels at the back of the inside of the eye which are not visible from outside.
-Incorporation of graphics and animations to explain the changes in the eye.
  1.2 Lack of knowledge on referral system
FGDs and SSIs- c, d
-Lack of clear information on referral processes (where to go, when to go, how to access, etc.).
-Inadequate information in the referral letter.
-Need of clear stepwise guide on directions of reaching to eye clinic from the medical clinic, with a suggestion to include a map and how to get an appointment.
-Information on procedures that will take place at the eye clinic, days and time of eye clinics.
-Forgetfulness of the information relevant to the eye screening appointment.
-Suggest including a flow chart about the process of referral pathways – step wise actions to go from the medical clinic to eye clinic.
“We forget what doctor said when come out form the doctor’s room. Sometime people don’t like to ask again from doctor, thinking that doctor will blame”
“At the very first time we do not aware, don’t we? One will say this way, other will say that way only wasting of time” [PwDM_PW]
“List out the availability of eye clinics that diabetic patients can attend” [Ophthalmologist_SI]
-Inclusion of information on availability of free services at the nearest eye clinic.
-Map with directions (in the leaflet), how to get an appointment of out-patient eye clinic, the details of eye examination/consultation processes happen at each stage.
-Provide a space in the leaflet to mention details of next appointment (to be documented by the eye doctor).
-Inclusion of a flowchart guidance on processes at eye clinic/eye hospital.
  1.3 Attitude on uptake of DR services
-Need to emphasise the necessity of DRS even without having visual symptoms.
Reluctant to uptake services due to long waiting time at the eye clinic.
“Emphasise that diabetic retinopathy changes are not visible to outside therefore you won’t be aware about this problem until you become blind” [Media personnel_SI]
“some time whole day we wait in the queue, but no treatment given”
-Emphasise on early asymptomatic phase and need of regular screening even without any symptoms.
  1.4 Attitude of lack of perceived threat on DR blindness
-Benefits of action (screening) and threats of inaction (sight loss).
-Benefits of annual screening, DR assessment and treatment at the eye clinic.
“People don’t know about DR, we think it as a just eye check-up, we don’t know that it is important to check eyes” [PwDM_PW] -Highlight the danger of losing sight due to DM / DR and it is irreversible.
-Information on early screening, detection and treatment can prevent sight loss.
  1.5 Attitude of fear of uptake of services
FGDs -
-Fear of dilated fundoscopy,
-Need of accompaniment following dilatation,
-Lack of knowledge on process and requirement of pupil dilatation in retinal examination.
-PwDM reluctant to undergo pupil dilatation
-Ensure details of eye examination do not promote fear.
-Recognise the discomfort side effects but place emphasis in the benefits of the eye examination
-Fear to uptake laser and surgery.
“There is a drop before eye examination, and putting it to the eye is very painful” [PwDM_PW]
“It was like burning, and covered the vision like fog” [PwDM_PW]
“My eyes became blue, it was such an electric shock.” [PwDM_PW]
“bringing a guardian is compulsory for putting eye drop, otherwise you can’t move due to blurred vision” [PwDM_PW]
“Mention that they have to undergo dilated fundal examination to examine the inside of eye” [Optometrist_SI]
-Inclusion of information on why there is a need for pupil dilatation (to have a better view of the back of the inside of the eye).
Provisions of reassurance by an expert patient
-Include information on blurring as a temporary side effect but include reassurance that this is normal.
-To include guidance that accompaniment needed.
-Guidance that no driving recommended following examination for up to 4–6 h time period.
  1.6 Current level of expectation
-Need to describe DR as a separate entity, and it is different from cataract, glaucoma and vision problems that would require spectacles
-Confusions on DR screening over other forms of eye examination (refraction and cataract assessment)
“We don’t know about the diabetic retinopathy and how it could be treated, we though cataract surgery and spectacles is the solution” [PwDM_PW] -Inclusion of information DR as a separate eye problem and undergoing cataract surgery and using spectacles will not correct all visual problems.
- Need of salient information on DR and DRS.
  1.7 Expectation of Information on outcome of eye examination
-Describe the outcomes of screening
“Patients tend not to come once they have undergone a few treatment sessions, therefore need to tell the importance of attending for treatment regularly” [Consultant Ophthalmologist_PW] -Include information on outcome of the DRS and necessity of undergoing treatment as required.
-Inclusion of information on availability of free DR treatment facilities at the eye clinic/public sector hospital.
2.Main domain - Environment
 Social norms and access to information
  2.1 Social norms in the local context (lay referral systems)
-Practice of indigenous medicine, engage in religious activities and use of home remedies,
-Belief of blindness occur due to ageing, karma or faith.
-Decision making for women happen at the home environment decided by a male member of family.
“Doing ‘Bodhi puja’ activities and some other ‘bali-thowil’ (rituals and religious activities)” [PwDM_FGD]
“Keep tea powder on the eye, washing eye using pomegranate leaves and jasmine” [PwDM_DM]
“With aging diabetic is a normal disease. Also, most of these diseases occur due to our own sins” [PwDM_DM]
-Provision of information to refrain from those activities.
  2.2 Access to information and influences from the environment
SSI and SIs
-Lack of availability of health educational interventions on DR in local languages.
-Difficulties in communication with the providers (language barriers and usage of technical terms).
“We don’t know about eye issues that can occur with diabetes, hospital staff need to make us aware about that” [PwDM_DM]
“We do not have proper methods on health education especially for diabetic retinopathy” [Medical officer_SSI]
The need of HEI in local languages.
3. Main domain -Mode of Delivery
 Medium, personnel and place of delivery
  3.1 Views on medium of delivery
-Video, leaflet and poster as the suitable media for this context.
-Majority preferred a leaflet,
-Majority of the participants who speak Tamil preferred a video-based health educational intervention (assessed using a ranking system at PW).
“Video, leaflet and booklet are the preferable medium. We can have a video for about 15 min. Or quick advert < 1 min.” [Optometrist_SI] -Investigators consensus - Development of a leaflet and a video intervention in local languages (original version in English)
  3.2 Views on place of delivery
-Medical clinic as the best place to deliver.
-Majority wanted HE to be conducted at the medical clinics.
“Medical clinic is the best place to deliver this education intervention” [Expert PwDM_SI] -Field testing of the HEI at medical clinic.
  3.3 Views on personnel of delivery
-Delivery by doctor or a nurse.
-Health education should be done by a doctor or a nurse, best delivered by a doctor.
“Health education can be delivered verbally to a small group by a doctor, or need an educator to deliver information in especially in Tamil” [Medical officer_SI] -Field testing delivery of the HEI by the physicians at the medical clinic
4. Main domain – Comprehensibility and Readability
 Comprehension, readability and terminology
  4.1 Difficulties in finding the terminology in local languages
-Difficulties in understanding the terms of; retina, diabetic retinopathy, laser, pupil, pupil dilation, blood glucose.
“For dilating drops, dilatation of pupils, retina, retinopathy, use simple terms. Comprehensive eye examination word is hard to understand, mention that it is an examination of the back of the eye.
To describe the word retina: use - inside of the eyes or wall of the eye at the back or describe retina is like the roll of a film camera”. [Optometrist_SI]
-Use of phrases in local languages when there were no appropriate terms in local language.
  4.2 Views on layout and format (printed material and video).
-Inclusion of information on question and answer format.
-Incorporation of graphics and animations to explain that DR affects back of the inside of the eye.
-Reduce the number of sentences per page.
-Usage of high-resolution images.
-Usage of large fronts and large page sizes.
“Use more images to get the attention” [Consultant Ophthalmologist_SI]
“In the leaflet, each page can be divided using sub-topics, page 1-Title with a theme, 2nd – some background details of diabetes in Sri Lanka, 3rd – changes in the retina due to DM, 4th – screening and treatment options of DR, 5th – How to control DM, 6th – main messages, where to go for eye checking etc” [Community Physician_SI]
-Follow the suggestions given
  4.3 Usage of appropriate language matching the literacy level of the PwDM in the context
-Minimise the usage of technical terms and direct use of words in English.
-Availability of the alternatives for illiterate PwDM.
- Need of locally acceptable terminology to deliver information.
-Minimal usage of technical terms and usage of phrases when it is difficult to find the terms in local languages.
“doctors explain fast and sometime can’t understand, they use English words in between which we cannot understand. We do not ask those back again due to fear that doctor get angry” [PwDM_PW] -Followed the suggestions given in development of HEI.
5. Main domain - Behaviour
 Skills of acquiring information and cues for action
  5.1 Component of potential behaviour change
-Sharing the experiences of PwDM, those who had STDR / acute loss of vision.
- Skills and practice of acquiring knowledge and uptake of services
“We can include a video clip of a patient who lost vision due to diabetic retinopathy telling her/his experience, by this ask diabetic people to go for annual Dr screening”
[Lecturer in Media Communications_SI]
-Inclusion of a video segment of a patient sharing the experiences of acute vision loss (e.g. vitreous haemorrhage)
  1. astakeholder interviews
  2. bparticipatory workshops with PwDM
  3. cfocus group discussions with PwDM
  4. dsemi-structured interviews with providers