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Measuring Adolescent HIV Self-management: An Instrument Development Study

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Abstract

Adolescent HIV self-management is a complex phenomenon that has been poorly researched. A mixed-method explorative sequential research design was used to develop an instrument to measure adolescent HIV self-management in the context of the Western Cape, South Africa. The development and validation was undertaken in four phases: (i) individual interviews and focus groups with adolescents aged 13 to 18, their caregivers and healthcare workers (n = 56); (ii) item identification; (iii) item refinement through cognitive interviewing (n = 11), expert review (n = 11) and pilot testing (n = 33); and (iv) psychometric evaluation (n = 385). The final scale consists of five components with 35 items encompassing the construct of adolescent HIV self-management. The developed scale had acceptable reliability (0.84) and stability (0.76). Factor analysis indicated a good model-fit that support the structural validity (RMSEA = 0.052, p = 0.24; RMR = 0.065; CFI = 0.9). Higher self-management was associated with better HIV-related and general health outcomes, which supports the criterion- and convergent validity of the instrument.

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Acknowledgements

We would like to acknowledge the following organizations that provided funding for this study: National Research Foundation (NRF) of South Africa (Grant number 97022); South-2-South through the President’s Emergency Plan for AIDS Relief (PEPFAR); Harry Crossley Foundation funding through Stellenbosch University. Opinions expressed and conclusions arrived at, are those of the authors and are not attributed to the funders.

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Authors and Affiliations

  1. Department of Nursing and Midwifery, Stellenbosch University, Cape Town, South Africa

    Talitha Crowley & Anita Van der Merwe

  2. Centre for Statistical Consultation, Stellenbosch University, Cape Town, South Africa

    Martin Kidd

  3. Human Sciences Research Council, Cape Town, South Africa

    Donald Skinner

  4. Department of Public Health, Stellenbosch University, Cape Town, South Africa

    Donald Skinner

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  1. Talitha Crowley
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Correspondence to Talitha Crowley.

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Ethical Approval

Stellenbosch University Health Research Ethics Committee approval (Ref:S15/03/054) and Department of Health permission (Ref:WC_2015RP53_21) were obtained to conduct the study. Informed consent was obtained for all adult participants before data collection. Adolescent assent and parental consent (either in person or telephonically) was obtained for adolescents younger than 18. Adolescents and caregivers were reimbursed for their time and inconvenience (SA R80/USD 5.60 for interviews/focus groups and SA R30/USD 2.10 for completion of questionnaires). Participants could relate their experiences or complete questionnaires in their language of choice (English, Afrikaans or isiXhosa). All applicable international, national, and/or institutional guidelines for research on human beings were followed.

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Crowley, T., Van der Merwe, A., Kidd, M. et al. Measuring Adolescent HIV Self-management: An Instrument Development Study. AIDS Behav 24, 592–606 (2020). https://doi.org/10.1007/s10461-019-02490-z

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