HIV Stigma Experiences and Stigmatization: Intervention Impact (LG Medical Study) (EN)

1. Introduction

h e a l t h s a g e s o n d h e i d 2 1 ( 2 0 1 6 ) 1 9 6 e 2 0 5 HOSTED BY Available online at www.sciencedirect.com ScienceDirect journal homepage: http://ees.elsevier.com/hsag/default.asp HIV stigma experiences and stigmatisation before and after an intervention H. Christa Chidrawi a , Minrie Greeff a , * , Q. Michael Temane a , Colleen M. Doak b a Africa Unit for Transdisciplinary Health Research (AUTHeR), North-West University, Private Bag X6001, Potchefstroom, 2520, South Africa b Section of Infectious Disease, Department of Health Sciences, Vrije University, Amsterdam, Netherlands a r t i c l e i n f o a b s t r a c t Article history:

This study focuses on one aspect of a more extensive SANPAD-funded HIV stigma Received 5 February 2015 Accepted 16 November 2015 reduction research project. The study addresses not only the continuous burden of HIV stigma, but more specifically on the low rate of participation in healthcare opportunities and HIV stigma reduction interventions by people living with HIV (PLWH) This study tested both change-over-time in HIV stigma experiences of PLWH and change-over-time in the Keywords: HIV stigmatisation behaviour of people living close to them (PLC) in an urban and rural Change-over-time Community-based intervention setting in the North-West in South Africa.

These aspects were measured before and after the comprehensive community-based HIV stigma reduction intervention. A quantitative HIV stigma experiences HIV stigmatisation single system research design, with a pre-test and four repetitive post-tests, and purposive voluntary and snowball sampling were used. Findings did not indicate significant differ- ences between urban and rural settings, but demonstrated some significance in change- over-time in the HIV stigma experiences of PLWH as well as the HIV stigmatisation behaviour of PLC after the intervention. Recommendations include the continuation of this intervention, following the same guidelines that were implemented during the study.

Copyright © 2015, The Authors. Production and hosting by Elsevier B.V. on behalf of Johannesburg University. This is an open access article under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). 1. Introduction accurately describe stigma. They suggested that a term similar to racism be found that would strongly portray public disap- proval of discriminatory and stigmatising behaviour. HIV stigma manifests as the assertion of a socially con- structed undesired differentness through acts of ostracism, discrimination, social control, marginalisation and social domination ( Herek, Saha, & Burack, 2013 ).

Earlier authors have described it as a disempowerment of PLWH through labelling, stereotyping, separation, diminishing and discrimi- nation ( Link, Yang, Phelan, & Collins, 2004 ). Moreover, HIV infection remains a globally stigmatised condition ( Greeff et al., 2008 ) and HIV stigma remains a complex concept ( Mbonye et al., 2013 ) associated with blame, shame, disgrace and social unacceptability ( Mandal, 2013 ). Fifty years ago Goffman (1963) described stigma as a deeply discrediting personal phenomenon and forty years later, Deacon and Stephney (2007) argued for an even stronger term to more * Corresponding author. Tel.: ю 27 18 299 2092; fax: ю 27 18 299 2088. E-mail addresses:

Minrie.Greeff@nwu.ac.za (M. Greeff), c.m.doak@vu.nl (C.M. Doak). Peer review under responsibility of Johannesburg University. http://dx.doi.org/10.1016/j.hsag.2015.11.006 1025-9848/Copyright © 2015, The Authors. Production and hosting by Elsevier B.V. on behalf of Johannesburg University. This is an open access article under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ).

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1. Introduction

h e a l t h s a g e s o n d h e i d 2 1 ( 2 0 1 6 ) 1 9 6 e 2 0 5 197 according to Kohi et al. (2006) , stigma manifests in the viola- tion of human rights which may take the form of refusing to care for PLWH within health facilities, verbal and physical abuse, food deprivation, denial of employment or income opportunities, denial of leadership positions and a so-called justified breach of confidentiality regarding the HIV status of PLWH.

Further aspects of psychological distress experienced by stigmatised PLWH include increased physical distance, awkward social interaction, indifference, avoidance, blaming, exaggerated kindness, aggression, exclusion, excessive hy- gienic measures and being told to disclose or not ( Stutterheim et al., 2009 ). These complexities led to Holzemer et al. (2007) proposing a four-dimensional process model to facilitate a better un- derstanding of HIV stigma in Africa.

The model served as a basic framework for this study as it acknowledges that HIV stigma occurs within an interactive context where environ- ment, the healthcare system as well as people all play a role in the everyday stigma reality. In this model there are four interactive processes of HIV stigma, namely triggers, behav- iours, types and outcomes of HIV stigma. This suggests that an HIV test can trigger certain behaviour , lead to a specific type of stigma and result in a definable outcome of stigma for the PLWH. The types and outcomes of HIV stigma are broadly covered in the literature and are summarised in Fig. 1 to enhance un- derstanding.

Internal stigma seems to refer to self- stigmatising ( Holzemer et al., 2007 ) by PLWH or their insider view ( Rensen, Bandyopadhyay, Gopal, & Van Brakel, 2011 ). Received stigma ( Holzemer et al., 2007 ) relates to concepts like perceived/anticipated, outsider-view/external or felt stigma as mentioned by Mak et al. (2007), Weiss et al. (1992) and Herek et al., (2013) respectively, and as such experienced by PLWH as directed towards them. Lastly, associated stigma ( Holzemer et al., 2007 ) or secondary stigma ( Ogden & Nyblade, 2005 ) re- lates to stigma that stems from someone ' s association with PLWH and often includes PLC (people living close to PLWH).

It is important to understand that stigma may in some instances also arise from PLC participating in stigmatising behaviour towards PLWH. The experiences of PLWH with the above types of HIV stigma directed at them can be devastating with life-inhibiting emotional, psychological, relational or material outcomes. Repeated experiences of abuse and discouragement to participate in treatment programmes and attend care facil- ities could lead to diminished physical and mental health ( Greeff et al., 2008 ).

Isolation or decreased social participation of PLWH stems from living while fearing stigma and thus minimising their exposure to others ( Gilbert & Walker, 2010 ) which in turn leads to poor participation in healthcare as well as in personal and employment relationships ( Greeff et al., 2010 ). A further outcome of HIV stigma for PLWH relates to self-isolating behaviour to prevent HIV-transmission to others and to mini- mise secondary (associated) stigma directed at those living close to them ( Salter et al., 2010 ). PLWH often experience personal and emotional frailty coupled with internalised self- stigmatisation, shame and a compromised self-efficacy ( Naidoo et al., 2007 ).

This leads to social avoidance, real or perceived loss of friends, perceived discomfort of those they are in contact with, symptoms of depression and feelings of anxiety, hopelessness and unattractiveness ( Cahill & Valadez, 2013 ). All these aspects contribute to a decreased quality of life as an outcome of HIV stigma for PLWH and poor disclosure practices, poor sexual choices or quality-of-life decisions driven by a debilitating, internalised fear of losing significant relationships and losing their source of income/livelihood.

Other fears include the fear of losing out on marriage, child- bearing, family care, hope, self-worth and reputation ( Kasapoglu, Saillard, Kaya, & Turan, 2011; Rensen et al., 2011 ). However, HIV stigma could be turned around and lead to positive outcomes if PLWH become involved in actively reducing stigma, accept their HIV status, demonstrate a pleasant disposition, choose positive interpretations of social interactions, refuse the victim role and focus on health, Fig. 1 e Types of HIV stigma.

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3.1. Sample

h e a l t h s a g e s o n d h e i d 2 1 ( 2 0 1 6 ) 1 9 6 e 2 0 5 198 resilience, strengths and capacity and thereby flourish in so- ciety ( Shih, 2004 ). However, the reality is that the South African Medical Research Council ( Visser, 2007 ) some seven years ago found no evidence of HIV stigma reduction in sub-Saharan Africa. Mbonye et al. (2013) recently conducted a longitudinal study in which it was found that there was a decrease in HIV- associated stigma with commencement of anti-retro viral treatment. But the stigma increased again after 18 e 30 months on treatment and seemed to then persist in the long term.

Even HIV status disclosure behaviour decreased as the visible HIV signs and symptoms of the illness decreased. Furthermore, it is interesting to observe differences of HIV stigma and stigmatisation between urban PLWH and PLC and their rural counterparts. The literature points to complexity and even disagreement among researchers in this regard. This study did not find significant differences between the HIV stigma experiences of PLWH or stigmatisation behaviour within urban and rural communities. The complexities of continuous migration of community members between urban employment and rural homesteads were, however, noted.

Voeten, Egesah, and Habbema (2004) suggest that this is one of the reasons why a full understanding of HIV and HIV stigma has been delayed in rural areas. Naidoo et al. (2007) found that urban PLWH faced more received stigma than their rural counterparts and that urban infrastructure facilitates higher reporting on HIV stigma. Heckman et al. (1998) found that urban and rural PLWH in the USA did not differ in age, edu- cation, employment, income or HIV symptomatology but that rural PLWH rated the severity of barriers to competent and compassionate care and care facilities higher than urban PLWH.

These barriers included a shortage of competent health professionals, long distances to medical facilities, inadequate public transport and painful experiences of stig- matisation. Ankrah (1993) added a lack of privacy, anonymity and confidentiality as common aspects of HIV stigma in rural areas. According to Mswela (2009) , unsympathetic and harsh treatment of sick relatives appears to be more common in rural areas. This study tested an intervention for the reduction of stigma and stigmatising. According to a literature review, studies have been conducted and the outcomes have been reported of historic and recent community-based HIV stigma reduction interventions.

During the first 25 years of the AIDS pandemic, the interventions have reported limited success in alleviating the effects of HIV stigma on community, national, and global levels. However by the end of the nineties, Corrigan (2000) implemented the attribution model which focused on replacing incorrect attributions/beliefs with correct ones. The operative elements of this model were protest against inac- curate information and myths, insurance of responsible HIV education, and facilitation of contact between stigmatised and stigmatising people ( Corrigan, 2000 ).

Generally, interventions were based on intrapersonal, interpersonal, community, institutional and governmental strategic levels ( Mahajan et al., 2008 ). The critical elements of such interventions were identified. Brown, Macintyre, and Trujillo (2003) mentioned a set of four elements. These were information to the public, personal contact with PLWH, coping skills for dealing with stigma and applied counselling. Similarly, Uys et al. (2009) used three basic elements in their intervention, namely accurate information, personal contact with the stigmatised and skills to cope with stigma.

Ongoing research started promoting multi-pronged approaches such as a combination of sharing information and building skills, or education and empowerment combined with personal con- tact ( Brown et al., 2003; Holm-Hansen, 2009 ). An example of this approach is the Cross, Heijnders, Dalal, Sermrittirong, and Mak (2011) matrix which was used as a framework for situa- tional stigma interventions and strategic stigma reduction guidelines. This model was based on the intrapersonal, interpersonal, and organisational and community or govern- mental levels of stigma and cross-referencing components like labelling, stereotyping, separation, status loss and discrimination. 2.

Problem statement and research objective HIV stigma, HIV stigmatisation and the need for the reduction (and eradication) of both have become a growing international concern. Community-based change needs to reflect specific outcomes like a measurable decrease in the HIV stigma ex- periences of PLWH as well as in stigmatisation. Such change will ideally also reflect the empowerment of PLWH and the relational enhancement between PLWH and PLC. This study focused on a specific intervention that responded to three research questions .

Firstly, is there a difference in the stigma reduction experiences between urban and rural PLWH and PLC following the comprehensive community-based HIV stigma reduction intervention? Secondly, will the compre- hensive community-based HIV stigma reduction intervention reduce the stigma experiences of PLWH? Thirdly, will the comprehensive community-based HIV stigma reduction intervention reduce HIV stigmatisation by PLC? The research objective for this article was thus to observe change-over-time in the HIV stigma experiences of PLWH and the stigmatisation by PLC in both urban and rural settings, following the comprehensive community-based HIV stigma reduction intervention. 3.

Research design and methodology A quantitative single system design ( De Vos, Strydom, Fouche, & Delport, 2005 ) with a pre-test and four repetitive post-test measures (01 02 03 04 05) was implemented. Both an urban and a rural setting were included. 3.1. Sample The sample for this study comprised two groups representing their respective communities. These groups were represen- tative of an urban and a rural community each, with each having PLWH and PLC groups. This study formed part of a SANPAD-funded study aimed at promoting a deeper under- standing of HIV stigma and how people cope with the stigma related to HIV.

The study thus also focused on the strength- ening of relationships between PLWH and PLC as well as the activation of leadership by both the PLWH and PLC towards

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3.3. Data collection

h e a l t h s a g e s o n d h e i d 2 1 ( 2 0 1 6 ) 1 9 6 e 2 0 5 199 the reduction of HIV stigma. The therapeutic nature ( Thorne, 2008 ) of the intervention limited the number of participants because meaningful interaction in small groups was required and non-probability sampling methods were thus used. Mediators in already trusting relationships with PLWH from the identified urban and rural settings were sourced with the help of existing NGOs and healthcare clinics. These me- diators helped the researcher find 18 PLWH by means of purposive sampling. This was followed by snowball sampling to identify PLC for the study. The inclusion criteria for PLWH were as follows:

Partici- pants had to be over 18 years old, conversant in either Afri- kaans, English or Setswana, HIV-positive for a minimum of six months, and willing to give informed consent for participation and recording of discussions. PLWH participants were also required to openly share in HIV-status disclosure workshops with other PLWH. Furthermore, they were expected to be willing and able to nominate PLC for participation in various workshops of designated groups involving both PLC and PLWH. Eventually, 10 PLWH from the Potchefstroom urban district and eight PLWH from the rural Ganyesa district of the North-West volunteered (see Table 1 ). All the PLWH were black South Africans.

Twelve finished school with Grade 10 or higher, seven held a post-school certificate and one a diploma. Ten persons had no post-school education. The PLWH participated in snowball sampling for the next part of the study and could nominate six PLC, one from each of six designated categories e a spouse or partner, a child over 15 years of age, a family member, a close friend, a spiritual leader and a community member. Six designated groups were thus formed. The inclusion criteria for nominated PLC corre- sponded with that of PLWH, except that PLC did not have to be HIV-positive.

Not all PLWH were able to nominate a suitable person for each designated group but a total of sixty ( n ј 60) PLC were identified (see Table 1 ). There were 23 urban and 37 rural Setswana-speaking participants from the same province. The PLC sample included 93.3% black, 4.8% coloured and 0.3% Indian participants. Of the 60 PLC, 83.3% had passed Grade 10 or higher, 55% had no post-school education, 41.7% had ob- tained a post-school certificate and 3.4% a diploma or degree.

namely the a) sharing of information on HIV stigma and coping with HIV stigma, b) the equalising of relationships between PLWH and PLC through increased interaction and contact among them by grouping them together, and c) the empowerment of members of both groups towards leadership in HIV stigma reduction through practical knowledge and experience of project planning regarding HIV stigma reduc- tion and implementation in their communities. The comprehensive community-based HIV stigma reduc- tion intervention primarily involved three processes (see Fig. 2 ) and ran over a five-month period in both the urban and rural settings.

Firstly, there was a two-day presentation and activity-based workshop for PLWH only. It focused on their personal understanding of HIV stigma, identification of their personal strengths and teaching responsible disclosure man- agement to prepare them for the rest of the workshops in the intervention. This workshop for PLWH was followed by a se- ries of six three-day workshops for each group of PLC: first the group of spouses/partners, then the group of children over 15, then family members, friends, spiritual leaders and, lastly, neighbours or community members.

The PLC workshops occurred two weeks apart and were led by two facilitators (one HIV-infected and one non-HIV infected person) for each group. These workshops were attended by all PLWH. The first day of these workshops focused on an understanding of and coping with HIV stigma and the relationship between PLWH and PLC. The second day focused on learning and practising the planning of an HIV stigma reduction project with a group similar to their specific designated group, e.g. partners with a community group of partners. Each of the 12 groups was given a month to implement their projects in their community while receiving support from the facilitators.

In the third one-day workshop, the original designated group invited community members as guests and then presented feedback on their projects. Small prizes were awarded by the research team. 3.3. Data collection The data collection process made use of two structured, valid and reliable measuring instruments, namely the Perceived AIDS Stigma Instrument PLWA (HASI-P) ( Holzemer et al., 2007 ) and the AIDS-Related Stigma Measure for Community HIV Stigma ( Maughan-Brown, 2004 ). A pre-test and four post-tests were conducted on a three-monthly basis over a one-year period for PLWH and PLC in urban and rural settings to test 3.2.

The intervention The intervention was adapted from the validated intervention manual of Uys et al. (2009) and was based on three tenets, Table 1 e Sample distribution. Table 1 Urban Rural Total Female Male Sub-total Female Male Sub-total PLWH 9 1 10 5 3 8 18 PLC Partners 0 2 2 1 0 1 3 Children 3 1 4 5 2 7 11 Family 2 0 2 4 1 5 7 Friend 2 0 2 6 0 6 8 Spiritual Leader 2 4 6 7 3 10 16 Community Member 6 1 7 8 0 8 15 Total 15 8 23 31 6 37 60

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