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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.