A cross-cultural adaptation and validation of a scale to assess illness identity in adults living with a chronic illness in South Africa: a case of HIV.

The chronic illness trajectory and its outcomes are well explained by the concept of illness identity; the extent to which ill individuals have integrated their diagnosed chronic illness into their identity or sense of self. The capacity to measure illness identity in people living with HIV (PLHIV) is still relatively unexplored. However, this is potentially useful to help us understand how outcomes for PLHIV could be improved and sustained. This paper aims to explore the cross-cultural adaptation of a Belgian developed Illness Identity Questionnaire (IIQ) and validate the instrument using a sample of South African adults living with HIV. We followed a phased scale adaptation and validation process which included an investigation of conceptual, item, semantic and operational equivalence and also examined the psychometric properties of the IIQ. The concept of illness identity with its four factors; engulfment, rejection, acceptance and enrichment in PLHIV, was found to be relevant within this context. Five items from the original IIQ were excluded from the adapted IIQ due to either semantic insufficiency and/or inadequate measurement equivalence. The mode of administration of the IIQ was changed to accommodate current study participants. The original four factor 25-item model did not fit current data, however, a better contextualized, four-factor, 20-item model was identified and found valid in the current setting. The results showed adequate statistical fit; χ2/d.f. = 1.516, RMSEA = 0.076, SRMR = 0.0893, and CFI = 0.909. Convergent and discriminant validity were also tenable. The cross-cultural adaptation and validation of the IIQ was successful, resulting in the availability of an instrument capable of measuring illness identity in PLHIV in a high HIV prevalence and resource-constrained setting. This therefore addresses the paucity of information and expands on knowledge about illness identity.

Adapting to, integrating and self-managing HIV as a chronic illness: a scoping review protocol.

INTRODUCTION: The process of adapting to a life with a chronic illness, is a well-researched phenomenon for a number of common chronic illnesses. The construct, adaptation, embeds the notions of integration of the chronic illness into identity and self-management. Integration precedes self-management and is key to living positively with a chronic illness. Adaptation is an important concept in understanding trajectory and outcomes of living with a chronic illness. Applicability of these concepts to HIV as a chronic illness; when suppressive adherence has been achieved, however, is unknown. Specifically, the adaptation process to living with HIV as a chronic illness, the integration of HIV into identity and the resulting self-management behaviours by adults living with HIV are relatively unexplored. We describe a protocol for a scoping review of adaptation to living with HIV, we structure the enquiry around integration of HIV into identity and self-management and interrogate theories, models and frameworks that have been proposed and studied and we evaluate them for relevance and usefulness in the care and management of HIV. METHODS AND ANALYSIS: Methods proposed by the Johanna Briggs Institute will be followed. The protocol was drafted using the Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews and was registered with the Open Science Framework. MEDLINE, SCOPUS, Cochrane Library, CINHAL and SocINDEX databases will be searched. A search in Social Science Research Network eLibrary and Open Access Theses and Dissertations will gather grey literature and reference lists of included sources will be screened. Study selection process will involve a title and abstract review and full text review, guided by clearly defined inclusion and exclusion criteria. ETHICS AND DISSEMINATION: Ethical approval is not required because this is a proposed review and collection of data on publicly available materials. The results will be published in a topic relevant journal and presented at related scientific events.