Abstract
Purpose: :
To develop a multiple component questionnaire to determine the prevalence of disability, access and rights to services and quality of life for adults and children with disabiltiies from sensory, physical, intellectual, learning and mental impairments.
Methods: :
Using the principles of WHO’s International Classification of Functioning (ICF), the UN Convention on the Rights of People with Disabilities (UNCRPD), some items were derived from existing questionnaires such as the Washington City Group long and short sets and WHO instruments such as the WHO DAS II and the WHO QOL-BREF. As these did not fully meet the criteria of the social model of the ICF and rights-based approach of the UNCRPD and cover all causes of disability, new items were added such as for mental health, quality of life, access to services and rights. The draft questionnaire was trialled with people with disabilities and those without disabilities for preliminary assessment of validity. Interviews were conducted to assess the relevance of items and to determine if any important areas were not included. Socio-demographic items to assess disadvantage such as poverty and gender were included to determine associations with disability.
Results: :
Forty-one adults or proxy respondents for child participants in Bangladesh responded to items and gave feedback on their understanding of language, relevance of and concepts in items. Changes were necessary in language, content and format of items and choices of responses from the pilot testing. The core set of items on socio-demographic variables (25) and items for the prevalence and causes of disabilities (19) is common for infants, children and adults. The final questionnaire for adults (≥18 years) contains17 items on awareness of rights, 19 to determine effects of disability on quality of life and 45 to assess access to services. Questionnaires for children (5-17 years) and infants (0-4 years) include all sections but have fewer items.
Conclusions: :
After the initial validation of this new instrument, population-based field testing will be conducted in Bangladesh and Fiji to further establish validity and reliability for its use in any developing country to assess the prevalence and implications of disability on access to services and quality of life.
Keywords: clinical (human) or epidemiologic studies: biostatistics/epidemiology methodology • clinical (human) or epidemiologic studies: prevalence/incidence