The perceived discrepancy between the current and ideal situation regarding care and support within the KwaNgcolosi community was attributed to several reasons.
5.4.1 Stigma, Shame and Silence
Respondents noted that the discrimination and silence around HIV/AIDS still functioned as a significant barrier to HIV/AIDS care and support, as not knowing one was ill with the disease prevented one from being able to do anything about it.
“People don‟t want to come out or to divulge their status. They would come with stories like “no, I am like this, and this, and I have TB, or no it is a traditional thing, they would come up with preparing to be a Sangoma, [traditional healer working with ancestral spirits] and tell you this and that. I think [that they think]
it is a shameful disease because it came the wrong way, since this disease came by sex, whereas it can come in different ways.”
Respondent 1 Focus Group 5, Women 46 and older
Many participants demonstrated knowing that HIV/AIDS can come “different ways”, although they described the current social norms and perceptions within the community as still being that HIV/AIDS is shameful. There therefore appears to be a cognitive recognition that HIV/AIDS shouldn‟t be shameful, although it seems that this is still the prevailing normative perception within the community.
In cases where neighbours do not have a good, close relationship, this appears also to lead to the questioning of motives and a lack of trust of community members who wish to assist in care.
“I would say that the neighbours, sometimes it looks like the neighbours are not helping but that could also be about the relationship that they have with the household where there is a sick person. If they don‟t get along very well then they‟re not going to come along when somebody‟s sick because then it‟s gonna look like they‟re just coming here to make fun of the sick person, I mean it could
be something that is about the parents or even the children, but if the relationship is not so good then the neighbour is not going to come.”
Respondent 8 Focus Group 3, Women 26-45 years
5.4.2 Community (Un)Willingness for Involvement
Focus groups spoke about an unwillingness for community members to become involved in care and support for those with HIV/AIDS, and unwilling to participate in any endeavours seeking to promote such.
“The thing is the youth from here is not into things like that, if you are doing that sort of thing you become a laughing stock.”
Respondent 2 Focus Group 1, Men 18-25 years
This attitude appeared to particularly apply to endeavours around HIV/AIDS.
Furthermore, the social norm of alcohol indulgence was also a perceived obstacle for any endeavours.
“It is not easy to get together, because today‟s youth drink too much, you find that you have invited to a sports day or dance and they arrive drunk and they start causing chaos and being rude and he destroys whatever it was that we were trying to form. Now we can‟t do it as we had planned, because now they are stabbing each other and fighting. That is what I usually see.”
Respondent 4 Focus Group 2, Women 18-25 years
In addition to the active resistance mentioned by the youth of the community as mentioned above, the men in both focus groups aged 26-45 and 46 and older described a more passive resistance, where men of these ages simply were uninterested, preferring rather to drink and smoke.
“It is supposed to be difficult [to get them to participate]. They are drunks, they smoke, they are rude, they crush dagga, they cannot listen to another person speaking. Why? Because it‟s the dagga that roars in their heads. That is why you will not get them.”
Respondent 4 Focus Group 6, Men 46 and older
Based on the fact that it was only male that mentioned alcohol and dagga as a barrier, it seems that this is an obstacle for men rather than women in this community. According to Wolff, Busza, Bufumbo, & Whitworth (2006), drinking is a culturally- and socially-embedded activity, with many important local meanings attached, with gender norms pointing towards women traditionally being expected to stay at home and see to household duties, while men are expected to consume alcohol as a display of masculinity (Brown, Sorrell, &
Rafaelli, 2005, Wolff et al, 2006).
5.4.3 Socioeconomic Resources
A lack of physical, monetary resources was also perceived as a barrier to assisting in care by men aged 46 and older. However, this point was interesting in that it was followed by a perceived need to then seek for alternative ways in which people are, in fact, able to help.
“What beats us is because we are some of the people who feel pain when there is a person suffering from any disease. It becomes painful for us. Sometimes we are beaten by the fact that we have nothing in the hand. No money; I say that because right now I am not working, you do not even have the littlest amount of money to get up and face them. How you can help them is to sit down with them and talk about this thing.”
Respondent 2 Focus Group 6, Men 46 and older.
Socioeconomic resources as a perceived barrier may be understood when considering that traditionally, it is the men who are expected to be the primary breadwinners and provide for their household (Seeley, Grellier & Barnett, 2004).