The social life of questionnaires: exploring respondents' understanding and interpretation of disability measures

Disability statistics are an important component of an informational base to monitor the needs and rights of people with disabilities within all spheres of life. The effective use of disability statistics is based on measures that are transparent and valid and where potential sources of sampling, interviewer or respondent error are clearly understood. This study investigates respondent sources of survey data error generated by three sets of existing questions on disability, as applied to adults in South Africa as a case study contributing to the growing work in this field at an international level. The questions are the Short and Extended sets of the Washington Group on Disability Statistics, and the Global Study on Ageing’s (SAGE) health state description questions used by the World Health Organization. Disability is defined as the outcome of the interaction between a person’s health condition or impairment, and the context in which he or she lives. The question evaluation considers: a) the wording, comparing asking about difficulties and disabilities; b) respondents’ understanding and interpretations of whole questions; and c) the association between various life factors and the type and severity of functional profiles. The study uses a mixed methods design comprising focus groups, semi-structured interviews, in-depth interviews that tapped into the thinking behind respondents’ answers to questions, and standard questionnaires. There were 21 focus groups located nationally, and 69 semi-structured interviews and ten detailed cognitive testing interviews at the Agincourt Health and Population Unit, located in a rural area in north eastern South Africa. The results provide insight into the performance of the questions, and, particularly, the need for revisions of the questions, potential respondent sources of error, and factors in people’s lives that are associated with different response profiles. The analysis of wording shows that asking about ‘difficulty’ people have is a more inclusive and transparent measure than asking about disability. Analysis of respondents’ understanding and interpretation of questions shows that questions on vision, hearing, walking and climbing, self-care and communication are well understood as intended, while the questions on remembering are misinterpreted in similar ways by a high number of respondents. Responses to non-traditional disability domains of pain, affect (anxiety and depression) and fatigue (or problems with sleep) reflect predominantly people’s reactions to living in adverse conditions. The measures provide a way to broaden the notion of who is counted as disabled because of functional limitations for statistical purposes, but the identity of being disabled remains a separate concern. The differences between measuring identity and functional status and the implications of these separate concepts is one area identified as an important focus of future research arising from this thesis. This thesis builds on existing knowledge by: providing strong evidence on the effect of asking about disability versus difficulty; illustrating the importance of question evaluation as part of validity testing and provide a further example to add to the growing literature on this approach; providing evidence on how responses to basic activity domains differ to those given to questions on feeling domains and the implications of this for how disability is understood in a low income and resources context of rural South Africa

Problèmes, situations-problèmes en mathématique : un regard pluraliste.

peer reviewe

Measuring Disability Inclusion: Feasibility of Using Existing Multidimensional Poverty Data in South Africa

This paper presents a framework for measuring disability inclusion in order to examine the associations between disability severity and levels of inclusion, provides an example of its operationalization, and assesses the feasibility of using an existing dataset to measure disability inclusion using this framework. Inclusion here refers to the extent to which people with disabilities are accepted and recognized as individuals with authority, enjoy personal relationships, participate in recreation and social activities, have appropriate living conditions, are able to make productive contributions, and have required formal and informal support. Indicators for the operationalization were drawn from the Individual Deprivation Measure South Africa country study and were mapped on to the domains of inclusion (where relevant), and the Washington Group Short Set of questions were used to determine disability status (no, mild, or moderate/severe disability). The analysis indicates that individuals with disabilities experience generally worse outcomes and a comparative lack of inclusion compared to individuals without disabilities, and broadly that those with moderate or severe disabilities experience worse outcomes than those with mild disabilities. This analysis also provides insight into the limitations of using existing datasets for different purposes from their original design

Une forme embryonnaire du concept de dérivée induite par un milieu graphico-cinématique dans une praxéologie ‘modélisation’

Peer reviewe

Social aspects of living with rheumatoid arthritis: a qualitative descriptive study in Soweto, South Africa – a low resource context

<p>Abstract</p> <p>Background</p> <p>Rheumatoid Arthritis (RA) is a chronic illness with important functional, social and employment consequences. We therefore undertook a cross-sectional study, using the International Classification of Functioning, Disability and Health framework, to investigate the personal and social consequences of RA in women, living under largely impoverished conditions.</p> <p>Methods</p> <p>A qualitative case study design was used with a convenience sample of 60 women with RA living in Soweto, South Africa. Semi-structured in-depth interviews were conducted to cover a range of experiences including onset of disease, treatment, environmental barriers and facilitators, employment, and social inclusion in family and community life. The outcomes are described according the International Classification of Functioning, Health and Disability framework at the body, person and societal levels and looking at both personal and environmental factors.</p> <p>Results</p> <p>The main features of living with RA were pain, muscle stiffness at the body level, difficulties in doing various activities such as mobility, washing, dressing, domestic activities, using transport and obtaining and maintaining employment at the person level. At the societal level the participants described difficulties moving around, interacting socially and taking part in community activities, fulfilling social roles and earning a living. Environmental facilitators such as assistive devices and health care services improved functioning. Barriers such as physical environments, lack of transport and basic services, such as electricity, and attitudes of others lead to social exclusion, loss of a sense of self and independence. Low income, lack of sufficient public transport, and sparse basic services were poverty features that exacerbated negative experiences.</p> <p>Conclusion</p> <p>The experiences of living with RA in a low resource context are similar to those in mid- and high resource contexts, but are exacerbated by poverty and the lack of basic services. Pain and social exclusion are some of the key experiences of women with RA living in Soweto. The ICF provides a useful framework for describing and understanding the complexity of these experiences.</p