This is an Annotation for Transparent Inquiry (ATI) data project.
The annotated article can be viewed on the publisher's website.
Project Summary
A medical condition was diagnosed by doctors and other medical experts as the Human Immunodeficiency Virus (HIV) that causes Acquired Immune Deficiency Syndrome (AIDS) in the early 1980s. HIV is transmitted in the following ways: heterosexual, same sex, mother to child at child birth or breastfeeding, blood transfusion and needle stick injuries. An individual can be infected with HIV but this may not always lead to AIDS if proper antiretroviral therapy (ART) and medical care are given before the disease is far advanced. This condition or disorder has remained on most national and international agendas in search of the origin, treatment, prevention and cure. A positive HIV/AIDS diagnosis is a life-changing event and the patient has to deal with living with an incurable and chronic disease.
Globally, an estimated 36.7 million people are living with HIV, of which 25.5 million are living in sub-Saharan Africa (SSA) . Women are more likely than men to contract HIV. HIV prevalence is exceptionally high among SSA persons. This pattern is mirrored among SSA migrant women living in Western Europe. An estimated 29864 people have been diagnosed with HIV in Belgium since 1981 with an estimated adult prevalence of 0.2%. About 915 new HIV diagnoses were registered in 2016 and the number of patients in care was about 15266. Interestingly, about 68% of women receiving medical treatment and care are women from SSA.
Data
The paper’s main component is an investigation of the perceptions of stigma and discrimination among SSA migrant women in healthcare settings in Belgium. The data presented in this article is part of a larger qualitative study on the experiences of sub-Saharan African migrant women living and aging with HIV/AIDS in Belgium. Data was collected between April 2013 and December 2014 in Belgium. This paper describes life with HIV generally and stigma experiences in health care settings (hospitals, pharmacies and dental clinics) visited by study participants. Using data from semi-structured in-depth interviews and observations, the authors describe the causes, forms and consequences of stigma and discrimination in healthcare settings in the Belgium. A literature study was also done. The recruitment of participants was done in two phases. Firstly, recruitment was done through healthcare professionals treating the women at an AIDS Reference Centre (ARC) at a university teaching hospital. Healthcare professionals identified patients that met the inclusion criteria from the consultation list, informed them about the study and invited them to participate. The treating physicians briefly explained the aim of the study to patients. Where women refused to be interviewed, the healthcare providers systematically asked the patients their reasons for refusal. These reasons and some background information were communicated to the researcher who took note of the patients' reasons. The second phase of recruitment involved snowball sampling of SSA migrant women self-identified as living with HIV/AIDS during workshops on HIV/AIDS in Belgium. Participants recruited from HIV workshops were approached and invited by the researcher to participate in the study. In both cases, if they agreed to participate, they signed the informed consent forms. All the women invited were adults, aged 18 years and above, speaking French or English and receiving treatment in Belgium. Patients only recently diagnosed, within a period of less than three months, were excluded because of the great emotional impact of finding out about HIV positive status. Participants received no financial incentive. In addition, their treating professionals were interviewed.
Data analysis for this article was done as part of a larger study that used thematic analysis and some basic grounded theory techniques (coding, constant comparison) involving three stages: open coding, axial coding and selective coding. A rationale for using some basic grounded theory techniques in this study is that grounded theory method can be used for any form of data collection. Additionally, it can combine, integrate and transcend many data collection methods. In the first stage, words and sentences grounded in the text that were meaningful were identified for explanatory concepts. Transcripts were analysed, themes were noted and compared with other transcripts in order to ensure consistency. Then, each transcript was re-read and important words and phrases were highlighted by using colour-coding schemes for important categories of information grounded in the data. In this research, there were no criteria prepared in advance, supporting the inductive approach of grounded theory. The emerging categories were constantly compared and as the data was collected from the field, key issues were identified and modified in order to generate themes. During the second phase (axial) of coding, the relationship, context, and strategies used to manage the phenomenon (HIV/AIDS) were reviewed. Excerpts that could better explain the basic themes related to stigma and discrimination in healthcare settings were selected and included in the text. This final stage (selective coding) pulled together all the concepts grounded in the data in order to offer an understanding of the study aims. The outcome of this process was the development of a central theme that was pivotal to understanding SSA migrant women with HIV/AIDS perceptions of stigma and discrimination in healthcare settings in Belgium and the strategies they use to cope with the disease.
This article demonstrates that stigma and discrimination among sub-Saharan African migrant women in healthcare settings in Belgium is ubiquitous and affects the health-seeking behaviour of these women living with HIV. The feelings and experiences of not properly treated or received sub-optimal care at healthcare settings because of their being HIV positive is unequivocal. The paper further highlights various reactions to perceived negative attitudes or behaviours of non-HIV healthcare providers. Conversely, we found that most women self-stigmatized. They are aware of the existing HIV-related stigma; they accept or internalize this stigma and then apply this stigma to themselves by social distancing, blame, guilt, non-disclosure, shame, isolation and hopelessness. The compelling evidence depicts the damaging and adverse impact of stigma and discrimination on treatment adherence, physical and mental wellbeing of these women.