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Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa

The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV from 2007. Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. HIV disclosure stigma has been reduced i...

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Autores principales: Cooper, Diane, Mantell, Joanne E., Nywagi, Ntobeko, Cishe, Nomazizi, Austin-Evelyn, Katherine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4869124/
https://www.ncbi.nlm.nih.gov/pubmed/27242987
http://dx.doi.org/10.3389/fpubh.2016.00095
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author Cooper, Diane
Mantell, Joanne E.
Nywagi, Ntobeko
Cishe, Nomazizi
Austin-Evelyn, Katherine
author_facet Cooper, Diane
Mantell, Joanne E.
Nywagi, Ntobeko
Cishe, Nomazizi
Austin-Evelyn, Katherine
author_sort Cooper, Diane
collection PubMed
description The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV from 2007. Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. HIV disclosure stigma has been reduced in high prevalence, generalized epidemic settings, but some remains, including in research interviews. This paper documents the unexpected reactions of people living with HIV to interviewers. It highlights shifts over time from discussing daily events with researchers to later expressing distress and then relief at having an uninvolved, sympathetic person with whom to discuss HIV disclosure. While there are commonalities, women and men had gendered responses to interviewers. These are apparent in men’s uncharacteristic emotional responses and women’s shyness in revealing gendered aspects of HIV acquisition. Both women and men expressed stress at not being allowed or able to fulfill dominant expected masculine or feminine roles. The findings underline the role of research interviewers in study participants confiding and fully expressing their feelings. This greater confidence occurred in follow-up interviews with researchers in busy health facilities, where time of health-care providers is limited. It underlines the methodological value of narrative inquiries with research cohorts. These allowed richer data than cross-sectional interviews. They shaped the questions asked and the process of interview. They revealed participants’ increasing level of agency in expressing feelings that they find important. This research contributes to highlighting pivotal, relational aspects in research between empathetic, experienced researchers and study participants and how participant–researcher relationships progress over time. It highlights ethical dilemmas in roles of researchers as opposed to counselors, raising questions of possible blurring of lines between research and service roles. This requires further research exploration. It additionally underscores the importance of “care for the carer.” Furthermore, it emphasizes that cultural sensitivity to language involves more than merely speaking the words in a language. Culture, humor, dialects, conceptual issues, wordplay, common sense, and respectful attitudes to other languages, resonates.
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spelling pubmed-48691242016-05-30 Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa Cooper, Diane Mantell, Joanne E. Nywagi, Ntobeko Cishe, Nomazizi Austin-Evelyn, Katherine Front Public Health Public Health The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV from 2007. Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. HIV disclosure stigma has been reduced in high prevalence, generalized epidemic settings, but some remains, including in research interviews. This paper documents the unexpected reactions of people living with HIV to interviewers. It highlights shifts over time from discussing daily events with researchers to later expressing distress and then relief at having an uninvolved, sympathetic person with whom to discuss HIV disclosure. While there are commonalities, women and men had gendered responses to interviewers. These are apparent in men’s uncharacteristic emotional responses and women’s shyness in revealing gendered aspects of HIV acquisition. Both women and men expressed stress at not being allowed or able to fulfill dominant expected masculine or feminine roles. The findings underline the role of research interviewers in study participants confiding and fully expressing their feelings. This greater confidence occurred in follow-up interviews with researchers in busy health facilities, where time of health-care providers is limited. It underlines the methodological value of narrative inquiries with research cohorts. These allowed richer data than cross-sectional interviews. They shaped the questions asked and the process of interview. They revealed participants’ increasing level of agency in expressing feelings that they find important. This research contributes to highlighting pivotal, relational aspects in research between empathetic, experienced researchers and study participants and how participant–researcher relationships progress over time. It highlights ethical dilemmas in roles of researchers as opposed to counselors, raising questions of possible blurring of lines between research and service roles. This requires further research exploration. It additionally underscores the importance of “care for the carer.” Furthermore, it emphasizes that cultural sensitivity to language involves more than merely speaking the words in a language. Culture, humor, dialects, conceptual issues, wordplay, common sense, and respectful attitudes to other languages, resonates. Frontiers Media S.A. 2016-05-17 /pmc/articles/PMC4869124/ /pubmed/27242987 http://dx.doi.org/10.3389/fpubh.2016.00095 Text en Copyright © 2016 Cooper, Mantell, Nywagi, Cishe and Austin-Evelyn. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Public Health
Cooper, Diane
Mantell, Joanne E.
Nywagi, Ntobeko
Cishe, Nomazizi
Austin-Evelyn, Katherine
Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title_full Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title_fullStr Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title_full_unstemmed Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title_short Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa
title_sort narrative methods and sociocultural linguistic approaches in facilitating in-depth understanding of hiv disclosure in a cohort of women and men in cape town, south africa
topic Public Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4869124/
https://www.ncbi.nlm.nih.gov/pubmed/27242987
http://dx.doi.org/10.3389/fpubh.2016.00095
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