HIV testing and late diagnosis of HIV in black African and other women: a qualitative study of the social and cultural barriers.

Late diagnosis of HIV, meaning HIV that is diagnosed when the virus has already damaged the immune system, costs the NHS around £500,000 per patient, per year to treat, compared to the £5000 per patient per year to treat HIV diagnosed before significant damage has occurred. Late HIV diagnosis also results in poorer health and quality of life for individuals. Heterosexual women, particularly black African women, are at high risk of late diagnosis. This study will explore social, cultural and interpersonal factors that influence late diagnosis, including uptake of HIV testing, by conducting in-depth interviews with HIV positive and other high risk women.

Despite recent advances in treatment and care for people living with Human Immunodeficiency Virus (HIV), late diagnosis continues to be a significant problem and heterosexual women are more likely to be diagnosed late than homosexual men (HPA, 2011). Late diagnosis, i.e., diagnosis at the stage of immune suppression after which initiation of treatment is recommended, results in reduced life expectancy and quality of life for the individual, and impacts on the National Health Service (NHS) and social care system due to the financial burden of increased hospital bed days, intensive care bed days, high cost treatments and social care packages; as well as being significant in onward transmission of HIV (Duffus et al, 2012).

The primary aim of this research is to explore the social, cultural and interpersonal factors that influence women in making decisions around HIV testing. Additional objectives are to identify potential opportunities to offer HIV tests to women, other than those currently available, that would be acceptable to women; and to identify culturally competent interventions that could improve the uptake of currently available testing facilities. To be able to fully explore factors influencing women’s decision making around HIV testing, a qualitative study using 80 semi-structured in-depth interviews is proposed. There will be two study populations: HIV positive heterosexual women who were diagnosed either (a) ‘late’ or (b) ‘non-late’; and heterosexual women attending a sexual health clinic who are not known to be HIV positive and either (a) accept or (b) decline the offer of an HIV test during a sexual health clinic visit. There will be even numbers of black African women and ‘other’ women in each group. For the purpose of the study black African women will be defined as any woman of black origin who was born in Africa. ‘Other’ women will include any women who do not meet this definition and may include women of all ethnicities. As black African women are the group of women most at risk of HIV and account for a significant proportion of HIV positive women in the boroughs where the study will be conducted (HPA, 2011), and because levels of HIV related stigma in many African communities is high (Fakoya et al, 2008; Ndurangu and Evans, 2009), it is important to consider whether these women have particular needs in relation to HIV testing. ‘Other’ women are being considered as one group as the numbers of HIV positive women from ‘other’ ethnic groups are not high enough to be considered separately in the analysis (HPA, 2011). Women will be recruited from 4 HIV clinics and 4 sexual health clinics in east London.

A Grounded Theory (Glaser and Strauss, 1968) analysis will be conducted.

Potential benefits to patients include improved awareness of and access to culturally relevant HIV-related health information and HIV testing opportunities. Earlier HIV diagnosis benefits patients by providing access to effective treatment which can improve life expectancy and quality of life. Potential benefits to the NHS include a reduction in late diagnosis of HIV in heterosexual women, potentially saving a significant amount of money and resources. A reduction in late diagnosis will also reduce onward transmission of HIV.

Summary

A qualitative study using 80 semi-structured in-depth interviews is proposed to address the research question.  There will be 2 study populations: (1) HIV positive heterosexual women diagnosed either (a) late or (b) non late; and (2) Heterosexual women attending a sexual health clinic, who are not known to be HIV positive and either (a) accept or b) decline the offer of an HIV test during a sexual health clinic visit. A Grounded Theory approach (Glaser and Strauss, 1968) will be used for data analysis. In this study ‘late’ HIV diagnosis will be defined as diagnosis of HIV at a CD4 count of below 350; non-late will be defined as diagnosis of HIV at a CD4 count of 350 or above, in accordance with the British HIV Association (BHIVA) definition (2012). Equal numbers of black African women and women from other ethnicities will be interviewed. As black Africans in the UK bear a disproportionate burden of HIV disease (Fakoya, et al, 2012) and rates of late diagnoses are high in this group (HPA, 2011) it is important to explore the similarities and potential differences between these groups of women.

Aims

  • To explore the social, cultural and interpersonal factors that influence women in making decisions about HIV testing.
  • To explore the similarities in these influencing factors between black African and other women, whilst being alert to differences.
  • To understand the reasons for late HIV diagnosis in women, by comparing HIV positive women who were diagnosed either late or non-late.
  • To explore the social, cultural and interpersonal factors influencing why women either accept or decline the offer of an HIV test during a sexual health clinic visit.
  • To identify potential opportunities to offer HIV tests to women, other than those currently available, for example, in NHS or non-NHS settings, that would be acceptable to black African and other women.
  • To identify culturally competent interventions to facilitate uptake of HIV testing among women.

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