Development of an assessment instrument to measure disability related distress in primary school learners with vision impairment due to uncorrected refractive error in rural areas of KwaZulu-Natal Province, South Africa.

Abstract

With the increasing global emphasis on improving eye health in children, numerous efforts are being implemented to meet the eye care needs of the children. There is no instrument which can be used to measure the impact of the Disability Related Distress (DRD) on children with vision impairment (VI) due to uncorrected refractive error (URE). Aim The aim of the study was to develop an assessment instrument to measure DRD in Grade 1 to Grade 5 learners with VI due to URE in a rural and semi-rural setting. Methods This mixed-method study was conducted in 4 primary schools in Pinetown, KwaZulu Natal, Durban in 3 phases. Phase 1 involved twelve focus group discussions using semi-structured interviews to identify themes that formed the DRD items in the Instrument. A topic was qualified as an item if at least two participants made substantive comments on the topic in a single focus group and the topic was discussed by at least one child in two different groups. In Phase 2, we consulted ten experts to construct an instrument for pre-testing by considering relevance, relative importance, upsetting issues and wording of the items. Issues that had a mean score < 2 for relevance or importance were excluded. In Phase 3, we pre-tested the instrument to identify missing or redundant issues. An item was included in the final instrument if the mean score of relevance was > 1.5; prevalence ratio >30% or prevalence of scores 3 or 4 >50%; range of rate of occurrence was > 2 points; no significant concerns expressed by Primary Subjects, Secondary Subjects and Tertiary Subjects, and compliance of less than 5% of the responses to the item in the debriefing session suggested that the issues were not related to VI due to URE. Results In Phase 1, thirteen children with normal vision and 63 children with VI due to URE consented to participate in the focus group discussions. Eleven themes were generated from the focus group discussions and included as items in the draft provisional list. In Phase 2, one item was excluded and the experts pointed out the need to give explanations to the children. The items included were from the domains of Loss of Self Confidence (n=3), Loss of self-worth (n=3), Loss of interconnection/ interaction with community (n=2), Suspicion, humiliation and fight (n=1) and Discrimination (n=2). In Phase 3, pre-testing was conducted on 120 children (Normal vision, NV: Mild vision impairment, MVI: Severe vision impairment, SVI: 60:30:30). The rate of occurrence of the items showed an increasing trend, from NV to MVI and SVI. The average time needed for completing the questionnaire showed an increasing trend, from NV to MVI and SVI. All eleven items in the provisional list fulfilled the retention parameters. Conclusion The developed instrument is valid, appropriate and culturally sensitive to the rural population. Its administration is resource-friendly and efficient with straightforward analysis and interpretation of data. This makes it easy to communicate the finding to a wide range of stakeholders and decision makers.