London School of Hygiene & Tropical Medicine

You are HIV-positive. Do you accept or refuse?’ the relationship between acceptance, HIV and stigma in Zambia

Virginia Bond, Department of Global Health and Development

Both health care workers and people living with HIV in Zambia repeatedly use the concept of acceptance in relation to self-management of HIV.  This concept has been pivotal in work on death, dying and chronic illness (Kubler-Ross 1969, 1987, Telford et al 2006).  Yet the concept remains both relatively unexplored and prevalent in the more recent management of HIV in the era of antiretroviral treatment. 

The seminar analyses narratives of acceptance in a longitudinal qualitative research study (2012 to 2015) of 35 people living with HIV and on treatment in Lusaka, Zambia.  Although health care workers often pit acceptance against denial, the meaning of acceptance for PLHIV is more complex than the binary of acceptance versus non acceptance. Experiences are bound up the phase of the illness and with community, household, family and individual acceptance.  Household and family acceptance are often critical to PLHIV’s access to basic needs.

Two diverse processes involved with acceptance emerge from multiple narratives.  One is linked to the journey of living longer with HIV and oscillates around acceptance being a critical empowerment step for moving forward with HIV.  Acceptance here is a panacea – an active step that allows PLHIV to normalise their condition and dictates their adherence to medication, helps push away the affect and stigma of HIV, facilitates disclosure and repudiates rejection.  The power of being accepted in spite of – or indeed because of – your HIV was a source of strength and inspiration. The other process is more passive with PLWH accepting because they are faced with limited options and control.  This notion of acceptance is linked with religious and gendered teachings as well as to the period when treatment was not available.  

Stigma is linked to the experience of acceptance.  Although acceptance is partly indicative of reduced stigma, fear or experience of not being accepted is also driving stigma. Acceptance thus counters and underlies stigma – and being on ART strengthens the ability of PLHIV to be accepted partly because they are more ‘acceptable’ due to better health and productivity.  We would argue that this analysis suggests that acceptance is a wider frame than stigma, touching on a whole identity and context, and one that in the Zambian context requires more attention and care.