학술논문
Translating the consent form is the tip of the iceberg: using cognitive interviews to assess the barriers to informed consent in South African health facilities.
Document Type
Academic Journal
Author
Pillay N; Senior Lecturer, Department of Sociology, University of the Witwatersrand, Johannesburg, South Africa; Director, Sarraounia Public Health Trust, 20 4th Avenue, Parktown North, Johannesburg, 2193, South Africa. Correspondence: Nirvana.Pillay@wits.ac.za.; Ncube N; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Moopelo K; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Mothoagae G; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Welte O; Social Scientist, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.; Shogole M; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Gwiji N; Social Scientist, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.; Scott L; School of Public Health, University of Cape Town, Cape Town, South Africa.; Moshani N; Social Scientist, School of Public Health, University of Cape Town, Cape Town, South Africa.; Tiffin N; Professor, Life Sciences Building, South African Bioinformatics Institute, University of the Western Cape, Bellville, South Africa.; Boulle A; Professor, School of Public Health, University of Cape Town, Cape Town, South Africa.; Griffiths F; Professor, Warwick Medical School, UK; Professor, Centre for Health Policy, School of Public Health, University of the Witwatersrand, Johannesburg, South Africa.; Fairlie L; Director of Maternal and Child Health, Wits RHI, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.; Mehta U; Associate Professor, School of Public Health, University of Cape Town, Cape Town, South Africa.; LeFevre A; Associate Professor, School of Public Health, University of Cape Town, Cape Town, South Africa.; Scott K; Independent research consultant, Toronto, Canada; Associate Faculty, Johns Hopkins School of Public Health, Baltimore, MD, USA.
Source
Publisher: Taylor & Francis Country of Publication: England NLM ID: 101743493 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2641-0397 (Electronic) Linking ISSN: 26410397 NLM ISO Abbreviation: Sex Reprod Health Matters Subsets: MEDLINE
Subject
Language
English
Abstract
The increasing digitisation of personal health data has led to an increase in the demand for onward health data. This study sought to develop local language scripts for use in public sector maternity clinics to capture informed consent for onward health data use. The script considered five possible health data uses: 1. Sending of general health information content via mobile phones; 2. Delivery of personalised health information via mobile phones; 3. Use of women's anonymised health data; 4. Use of child's anonymised health data; and 5. Use of data for recontact. Qualitative interviews ( n = 54) were conducted among women attending maternity services in three public health facilities in Gauteng and Western Cape, South Africa. Using cognitive interviewing techniques, interviews sought to:(1) explore understanding of the consent script in five South African languages, (2) assess women's understanding of what they were consenting to, and (3) improve the consent script. Multiple rounds of interviews were conducted, each followed by revisions to the consent script, until saturation was reached, and no additional cognitive failures identified. Cognitive failures were a result of: (1) words and phrases that did not translate easily in some languages, (2) cognitive mismatches that arose as a result of different world views and contexts, (3) linguistic gaps, and (4) asymmetrical power relations that influence how consent is understood and interpreted. Study activities resulted in the development of an informed consent script for onward health data use in five South African languages for use in maternity clinics.