Health literacy in Adolescents Living with HIV: Insights from a modified e-Delphi survey on self-management competencies from health and social care professionals in rural KwaZulu-Natal, South Africa
DDI.ALHIVCompetencySurvey.2023.v1
Thandeka Smith
Sweetness H Dube
Africa Health Research Institute
Nesstar Publisher
Health literacy in Adolescents Living with HIV: Insights from a modified e-Delphi survey on self-management competencies from health and social care professionals in rural KwaZulu-Natal, South Africa
AHRI.ALHIVCompetencySurvey.2023.v1
Nothando Ngwenya
Janet Seeley
Maryam Shahmanesh
Christina Psaros
Nelisiwe Mtshali
Nompilo Shelembe
Siphephelo Dlamini
Lusanda Mazibuko
Thandeka Smith
Sweetness H Dube
Africa Health Research Institute
Nesstar Publisher
University Center for AIDS Research (HU CFAR), an NIH funded program (P30 AI060354), which is supported by the following NIH Co-Funding and Participating Institutes and Centers: NIAID, NCI, NICHD, NIDCR, NHLBI, NIDA, NIMH, NIA, NIDDK, NINR, NIMHD, FIC, and OAR
P30 AI060354
v1.0.0
Health literacy, HIV self-management, adolescent behaviour, KwaZulu-Natal, behaviour change wheel, COM-B model.
Health literacy, HIV self-management, adolescent health, cultural health competencies, behavioural change.
This study investigates the concept of health literacy among adolescents living with HIV (ALHIV) in KwaZulu-Natal, South Africa. It explores the determinants of health literacy and identifies self-management competencies necessary for effective HIV care. Using a modified e-Delphi survey with healthcare professionals and participatory methods with adolescents, the study aims to construct a culturally specific framework of health literacy for adolescents. Data collection includes qualitative interviews, group discussions, and surveys focusing on behavioural outcomes and cultural influences, guided by the COM-B framework and OpHeLiA approach.
South Africa
KwaZulu-Natal Province, focusing on uMkhanyakude (rural) and eThekwini (urban) districts.
Adolescents (ages 13-24) living with HIV, and healthcare professionals in rural and urban KwaZulu-Natal.
Adolescents and young adults living with HIV, aged 13-24, residing in KwaZulu-Natal for at least three months, able to provide informed consent or assent.
Survey data, qualitative interviews, participatory group discussions, and coded textual data
Additional processing involved developing the Delphi survey questionnaire on the RedCap platform and administering it through a mobile phone platform to ensure ease of access for participants. Each competency list, generated from literature and the qualitative study, was subdivided into categories, and the survey included both closed-ended Likert scale questions and open-ended comment sections for participant feedback.
Ngwenya, N., Seeley, J., Shahmanesh, M., Psaros, C., Mtshali, N., Shelembe, N., Dlamini, S., Mazibuko, L., & Smith, T. (2025). Health literacy in Adolescents Living with HIV: Insights from a modified e-Delphi survey on self-management competencies from health and social care professionals in rural KwaZulu-Natal, South Africa [Data set]. Africa Health Research Institute. DOI:https://doi.org/10.23664/AHRI.ALHIVCompetencySurvey.2023
Access to the data requires accurate completion of the online data access application form accessible on the AHRI Data repository(<https://data.ahri.org/>). Data users are required to abide by the data use conditions stipulated on the application for access to the data. Failure to do so may result in their data access privileges being revoked by the Data Custodian. In order to recognise the effort and intellectual contributions of AHRI investigators in producing and curating the data, users of AHRI data must acknowledge the source of the data and abide by the terms and conditions under which the data is accessed and must cite the dataset in publication using the citation provided as part of this documentation. All analytical datasets published on the AHRI Data Repository are assigned digital object identifier (DOIs) and the DOIs can be found on the Data Repository under Study Description tab - Access policy. AHRI data users are required to always cite the dataset using the relevant DOI.
ALHIVCompetencySurvey.2023.v2.NSDstat
20
31
Nesstar 200801
Participant ID
20
0
2
23
12.35
6.418
Being able to cope emotionally
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
2
6
6
0
7
7
0
8
8
2
9
9 extremely important
15
Being able to identify the impact of disease on young person life
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
1
6
6
0
7
7
2
8
8
1
9
9 extremely important
16
Being able identify when other care from other professionals such as mental healt
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
0
7
7
2
8
8
2
9
9 extremely important
14
Being able to have autonomy and make decisions for themselves
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
0
7
7
3
8
8
1
9
9 extremely important
14
Being able to read and write English at grade 7
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
2
7
7
1
8
8
0
9
9 extremely important
15
Are there any skills you think are important for self-care for ALHIV that are not
20
Understand developmental issues related to emerging adulthood
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
4
6
6
2
7
7
2
8
8
3
9
9 extremely important
9
Understand issues related to risk-taking and measures to limit this
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
4
6
6
2
7
7
3
8
8
2
9
9 extremely important
9
Understand environmental issues impacting young peoples health
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
3
6
6
2
7
7
2
8
8
4
9
9 extremely important
9
Understand the importance of peer relationships and how these may be promoted
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
4
6
6
1
7
7
1
8
8
4
9
9 extremely important
10
Understand the importance of restoring normality
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
2
7
7
1
8
8
6
9
9 extremely important
9
Know about current therapies
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
1
7
7
3
8
8
4
9
9 extremely important
10
Know about impact of HIV on psychological development
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
5
6
6
0
7
7
1
8
8
3
9
9 extremely important
10
Know about side-effects of treatment and how this might be different to those exp
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
3
6
6
0
7
7
2
8
8
3
9
9 extremely important
11
Know about ways of developing coping strategies
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
5
6
6
2
7
7
3
8
8
2
9
9 extremely important
7
Know about strategies of disclosing their status if they wanted
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
4
6
6
0
7
7
0
8
8
1
9
9 extremely important
14
Are there any areas of knowledge you think are important for self-care for ALHIV
19
Ability to disclose status to friends and family
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
4
6
6
0
7
7
1
8
8
2
9
9 extremely important
12
Ability to talk about difficult issues and health needs with care professionals
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
1
5
5 moderately important
1
6
6
1
7
7
2
8
8
1
9
9 extremely important
14
Ability to come to their own solutions
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
6
6
6
0
7
7
0
8
8
1
9
9 extremely important
13
Ability to talk about sexual issues
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
2
5
5 moderately important
3
6
6
2
7
7
0
8
8
2
9
9 extremely important
11
Ability to discuss the impact of condition on aspirations
20
0
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
0
7
7
4
8
8
2
9
9 extremely important
12
Are there any communication skills you think are important for self-care for ALHI
20
Ability to talk about HIV if bothered/concerned about something.
19
1
1
1 not Important
1
2
2
1
3
3
0
4
4
0
5
5 moderately important
2
6
6
1
7
7
0
8
8
5
9
9 extremely important
9
Sysmiss
1
Ability to attend clinic without a reminder
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
0
6
6
0
7
7
0
8
8
3
9
9 extremely important
16
Sysmiss
1
Ability to take medication without a reminder
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
1
6
6
0
7
7
1
8
8
2
9
9 extremely important
15
Sysmiss
1
Understand the importance of sleep as a healthy life choice
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
1
6
6
2
7
7
0
8
8
5
9
9 extremely important
11
Sysmiss
1
Understand the need to avoid smoking and excessive alcohol consumption
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
2
6
6
0
7
7
1
8
8
3
9
9 extremely important
13
Sysmiss
1
Knows what CD4 cell count and viral load are
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
0
6
6
0
7
7
1
8
8
4
9
9 extremely important
14
Sysmiss
1
Ability to self-monitor and assess own symptoms
19
1
1
1 not Important
0
2
2
0
3
3
0
4
4
0
5
5 moderately important
3
6
6
0
7
7
1
8
8
5
9
9 extremely important
10
Sysmiss
1