A qualitative study of the views of patients with human immunodeficiency virus and childhood trauma on the consent process for a neurocognitive and neuroimaging study

Research output: Contribution to journalArticle

Standard

Harvard

APA

Vancouver

Author

Bibtex

@article{b1325b3d14e043b5b5fbc0ea36dc5e3f,
title = "A qualitative study of the views of patients with human immunodeficiency virus and childhood trauma on the consent process for a neurocognitive and neuroimaging study",
abstract = "Aim To investigate the informed consent experiences of women with human immunodeficiency virus (HIV) and childhood trauma involved in a neurocognitive and neuroimaging study.Background There is no previous research on the consent process for people with both HIV and childhood trauma, conditions that are syndemic in South Africa. Research on the consent process for each individual condition has shown that individuals with either of these conditions may be vulnerable research participants. This study aimed to investigate the opinions of the women involved in order to refine future consent processes and ensure that they are appropriate for this population.Methods A qualitative semi-structured interview was conducted with women from Khayelitsha township in South Africa involved in a cohort study on neurocognitive and neuroimaging outcomes in HIV and childhood trauma, who agreed to participate in an interview immediately following their final study appointment.Findings Aspects most frequently commented upon by participants during the interview were community recruitment, incentives for participation, quality of information provided, and misunderstandings and unexpected events. The overarching finding was that of therapeutic misconception; participants expected, and highlighted as incentives for participation, health benefits that were not part of the study. A minority of participants reported discomfort from questions concerning their traumatic experiences. Despite this, the consent process was well received and there was good understanding of confidentiality issues and the voluntariness of participation.Conclusion Full disclosure of true benefits from participation must be emphasised throughout the recruitment process. This is particularly important for participants with HIV who appear to participate because of perceived health incentives. Providing prior notification that questions about traumatic experiences will be asked may improve the experiences of participants. A generic but thoroughly conducted consent process is suitable in this population.",
keywords = "childhood trauma, human immunodeficiency virus, informed consent, qualitative",
author = "Helen Bates and Soraya Seedat and Helen Lester",
year = "2014",
month = oct,
day = "1",
doi = "10.1017/S1463423613000443",
language = "English",
volume = "15",
pages = "362--374",
journal = "Primary Health Care Research & Development",
issn = "1463-4236",
publisher = "Cambridge University Press",
number = "04",

}

RIS

TY - JOUR

T1 - A qualitative study of the views of patients with human immunodeficiency virus and childhood trauma on the consent process for a neurocognitive and neuroimaging study

AU - Bates, Helen

AU - Seedat, Soraya

AU - Lester, Helen

PY - 2014/10/1

Y1 - 2014/10/1

N2 - Aim To investigate the informed consent experiences of women with human immunodeficiency virus (HIV) and childhood trauma involved in a neurocognitive and neuroimaging study.Background There is no previous research on the consent process for people with both HIV and childhood trauma, conditions that are syndemic in South Africa. Research on the consent process for each individual condition has shown that individuals with either of these conditions may be vulnerable research participants. This study aimed to investigate the opinions of the women involved in order to refine future consent processes and ensure that they are appropriate for this population.Methods A qualitative semi-structured interview was conducted with women from Khayelitsha township in South Africa involved in a cohort study on neurocognitive and neuroimaging outcomes in HIV and childhood trauma, who agreed to participate in an interview immediately following their final study appointment.Findings Aspects most frequently commented upon by participants during the interview were community recruitment, incentives for participation, quality of information provided, and misunderstandings and unexpected events. The overarching finding was that of therapeutic misconception; participants expected, and highlighted as incentives for participation, health benefits that were not part of the study. A minority of participants reported discomfort from questions concerning their traumatic experiences. Despite this, the consent process was well received and there was good understanding of confidentiality issues and the voluntariness of participation.Conclusion Full disclosure of true benefits from participation must be emphasised throughout the recruitment process. This is particularly important for participants with HIV who appear to participate because of perceived health incentives. Providing prior notification that questions about traumatic experiences will be asked may improve the experiences of participants. A generic but thoroughly conducted consent process is suitable in this population.

AB - Aim To investigate the informed consent experiences of women with human immunodeficiency virus (HIV) and childhood trauma involved in a neurocognitive and neuroimaging study.Background There is no previous research on the consent process for people with both HIV and childhood trauma, conditions that are syndemic in South Africa. Research on the consent process for each individual condition has shown that individuals with either of these conditions may be vulnerable research participants. This study aimed to investigate the opinions of the women involved in order to refine future consent processes and ensure that they are appropriate for this population.Methods A qualitative semi-structured interview was conducted with women from Khayelitsha township in South Africa involved in a cohort study on neurocognitive and neuroimaging outcomes in HIV and childhood trauma, who agreed to participate in an interview immediately following their final study appointment.Findings Aspects most frequently commented upon by participants during the interview were community recruitment, incentives for participation, quality of information provided, and misunderstandings and unexpected events. The overarching finding was that of therapeutic misconception; participants expected, and highlighted as incentives for participation, health benefits that were not part of the study. A minority of participants reported discomfort from questions concerning their traumatic experiences. Despite this, the consent process was well received and there was good understanding of confidentiality issues and the voluntariness of participation.Conclusion Full disclosure of true benefits from participation must be emphasised throughout the recruitment process. This is particularly important for participants with HIV who appear to participate because of perceived health incentives. Providing prior notification that questions about traumatic experiences will be asked may improve the experiences of participants. A generic but thoroughly conducted consent process is suitable in this population.

KW - childhood trauma

KW - human immunodeficiency virus

KW - informed consent

KW - qualitative

U2 - 10.1017/S1463423613000443

DO - 10.1017/S1463423613000443

M3 - Article

VL - 15

SP - 362

EP - 374

JO - Primary Health Care Research & Development

JF - Primary Health Care Research & Development

SN - 1463-4236

IS - 04

ER -