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

Aim

The aim of the current scoping review is to explore the adaptation to living with HIV as a chronic illness and the resulting self-management behaviours by adults living with HIV. The exploration is guided by the illness identity framework and the constructs that explain the extent to which HIV is integrated into a sense of self and identity.

Design

A scoping review of the literature was conducted, guided by the JBI Scoping Review Methodology.

Data sources

PubMed, SCOPUS, Cochrane Library, CINHAL, SocINDEX, Science Research Network eLibrary and Open Access Theses and Dissertations databases were searched. Reference lists of included sources were also screened.

Review methods

Eligible articles included peer‐reviewed literature on the adaptation to and the experience of living with HIV as a chronic illness as gathered from adults living with HIV. Endnote was used to screen titles and abstracts of retrieved studies, and Mendeley was used to screen full‐text articles. A data extraction sheet in Microsoft Excel was used to extract and analyse data.

Results

Twenty-seven articles were included in the review. The ways in which HIV impacts a sense of self and identity, and possible identity challenges those diagnosed with HIV may have to confront as a result, are highlighted. The review revealed that literature that explores the adaptation of adults to living with HIV as a chronic illness is fairly aligned with the illness identity framework although with a few differences. We also draw attention to self-management processes and health outcomes that are related to the degree of HIV integration or non-integration into a sense of self and identity. The roles of HIV stigma and the social context in the process of integrating HIV into a sense of self and identity are acknowledged as critical and are underscored.

Conclusion and impact

Identity challenges as a result of an HIV diagnosis are a significant impediment to successful adaptation to living with HIV as a chronic illness. Healthcare providers, families and communities may have to be cognisant of these conflicts when interacting with PLHIV. That illness identity in HIV is linked with important health outcomes and self-management processes, makes for compelling evidence that in order to improve and achieve sustained outcomes for people living with HIV, their illness identity should be considered from diagnosis and throughout the illness trajectory. The idea of illness identity in HIV presents opportunities for and could inform novel interventions targeted at individual, family and community levels and potentially positively transform HIV programmes.