Ausencia o defecto de autoridades oficiales

This theme describes the extrinsic or social relationship factors in the community environment which could act as facilitators or barriers to activity performance and to

participation in society. Participants in both FGDs, particularly women, spoke of facilitators, including support from other people and socialization with others, as being good strategies for maintaining psychological well-being. The barriers they spoke of included the negative behaviour and attitudes of other people around them once they discovered they were HIV positive, and conflict in their relationships with others.

4.5.5.1 Family relationship environment

This section includes factors that act as facilitators or barriers to function.

Family relationship factors that act as facilitators

A few participants said that their families had accepted them as PLWH and showed a positive attitude towards them, which included giving care and support. Sometimes, however, this amounted to overprotection, and led to some confusion between wanting and not wanting the support.

For example at the urban hospital, one 45 year old woman, a widow, had lost her child who was born HIV positive. She shared her experience with her siblings. She indicated that they protected her and cared for her. However, sometimes they were too caring, and the family prevented her from doing household activities and treated her like a disabled person even when she thought she was able to carry out the tasks.

3A: In my family, they really pay much attention, very much! They always make sure they know what is happening to me. I live with three of my sisters in the same

compound; they give me what I need and even do all household activities for me … I think I am able to do some work, but they consider me unable and always want me to

175 rest! They refuse to let me do some work, but I insist and do some [work] and tell them

I am not a disabled. (Urban, female, 45 years old, 9 years on antiretroviral treatment) 4A: Yeah, they try not to hurt her! (Urban, female, 66 years old, 7 years on

antiretroviral treatment)

2A: Yeah that is the way it is. Hum!³² They pity her and do not want to hurt her!

(Urban, male, 49 years old, 5 years on antiretroviral treatment)

3A: Yes! They have mercy. (Urban, female, 45 years old, 9 years on antiretroviral treatment)

Family relationship factors that act as barriers

At Hospital A, a 46-year-old woman shared her experience of what happened to her immediately after being diagnosed as HIV positive. Her own family, including her father, mother and siblings, did not accept her as a PLWH. They ostracised her and abandoned her completely. They did not even care how she was coping: she was left alone when she was most in need of support. This made her very sad and caused her to become ill.

7A: (With great sorrow) Just after getting informed that I am infected, my family was unhappy. I was always lonely, sick and even hospitalized. Because of much painful emotions and loneliness I had chronic headache and then, paralysis. They really showed negative attitude towards my status, they were even unable to come near me.

(Urban, female, 46 years old, 5 years on antiretroviral treatment)

The woman explained how her family, particularly her father, but also other family members, were particularly harsh; she felt emotionally abused.

7A: Can you imagine, even my father used to tell me that I am a dead person … Some [family members] managed to come and hurt me even more saying: “It is that bad illness! She will not survive…” (Urban, female, 46 years old, 5 years on antiretroviral treatment)

32 Expression of sympathy

176 Speaking very emotionally, with a great deal of sorrow, this woman explained how she was

infected by her husband. Later, after mistreating her, and demonstrating disrespect and dishonesty, he abandoned her and their three children to go to other women.

7A: I separated from my husband because of bringing other women, saying they were his sisters. He was telling me I was old and he was going to look for young ones. So, I felt crazy. I told him: “Now I have a problem with my parents because of the disease you brought to me. Instead of facing the consequences of the problem together, you are the one causing me troubles.” (Urban, female, 46 years old, 5 years on antiretroviral treatment)

She indicated that the accumulation of all these deceptions was so difficult to bear that she considered committing suicide. Her story was conveyed with so much emotion that she cried afterwards. Other participants showed empathy and kept silent for some minutes.

7A: There was a time; I had an idea of committing suicide because of unhappiness.

(Urban, female, 46 years old, 5 years on antiretroviral treatment)

At the rural hospital another woman said she and her husband had different opinions about whether to have a child. Her husband wished to have a child; however, she was worried and believed that giving birth could result in health problems. This had caused problems in their relationship.

6B: (Looking sad) I have another problem that overcomes my capacity until God only helps me. My husband always wishes he had a child, but it may cause me problems, I know! Hence misunderstanding! (Rural, female, 42 years old, 8 years on antiretroviral treatment)

A 46-year-old woman spoke of being mistreated, disrespected and of experiencing a lack of care from her partner. This interfered with her sexual arousal and had an effect on their sexual relationship.

7A: (Looking very sad) When you are in the misery, you cannot feel the desire to do it [sexual intercourse]! I have never been cherished by my partner; it is now deleted from my mind. (Urban, female, 46 years old, 5 years on antiretroviral treatment)

177 One participant at urban Hospital explained how her mother stigmatised and judged her

according to her appearance. This made her disappointed in her mother‘s judgement of her appearance and this stopped her disclosing her HIV status.

5A: Hum!³³ You cannot believe! Even my mother judges me! I visited her and she said: “My child, have you been infected with HIV?” I replied: “I am really healthy.”

(Urban, female, 30 years old, 3 years on antiretroviral treatment) 4.5.5.2 Community relationship environment

Community relationship factors that act as facilitators

In both FGDs, a few participants recognised that there were people around them who understood their problems, who showed a positive attitude and gave support, and who respected and accepted them the way there were as PLWH.

8A: There are people who are ignorant and have negative attitudes towards us;

however, there are others who understand, take it easy, and even sometimes give us advice. Yet it depends on one’s mindset (Urban, female, 23 years old, 4 years on antiretroviral treatment)

One participant at Hospital A explained that after being diagnosed HIV-positive, she was abandoned by her family; however some people in her community showed empathy and support and tried to convince her parents and siblings and advised them to show some care.

7A: People approached them [my family] saying: “you should treat her like others”…

(Urban, female, 46 years old, 5 years on antiretroviral treatment)

Some participants at the rural hospital appreciated socializing and entertaining with others in the community. They encouraged other people in the group to entertain and recognised that entertaining and socializing with other people in the community was a good strategy to improve psychological wellbeing and contribute to a good state of mind. They also stated that they felt happy when they were with other people, to the extent of wanting to stay with them.

33 Expression of revolt

178 2A: Hum!³⁴ I think we should sometimes forget about our problems and entertain,

interact with others, and relax! (Urban, male, 49 years old, 5 years on antiretroviral treatment)

3A: Yes! We relax the mind! (Urban, female, 45 years old, 9 years on antiretroviral treatment)

8A: About entertainment, we do not feel upset when we are with others. We would rather stay with others. (Urban, female, 23 years old, 4 years on antiretroviral treatment)

Community relationship factors that act as barriers

One participant indicated that PLWH experience extreme forms of stigmatisation in their respective communities. It is as if they are considered non-existent in their communities, despite the fact that they are struggling to survive.

5A: (very sad) Yeah! People do not consider us like human beings. They comment that we are about to die. (Urban, female, 30 years old, 3 years on antiretroviral treatment) Certain participants at the urban hospital explained how the community stigmatised them according to their appearance. They explained how people in their community, even those whom they trusted and respected (for example, close friends) judged them or judged other people in their presence according to their appearance and concluded that they were HIV-positive. They indicated that this disappointed and confused them, and decreased their trust in people, including those who were close to them. For example, one participant explained how disappointed she had been by the attitude of her best friend, who was also her godmother.

The friend had assisted her and encouraged her to go for testing, but when she learnt of her status she still judged other people by their appearance, even when they were together. This has led to her to lose her trust in other people.

4A: My godmother helped me to know that I am HIV-positive. We used to live as

friends. She really assisted me; she buys me medicines if I get sick, milk, and whatever I

34 expression of resilience

179 want. However when we are on the way to church if she sees someone, she says; “Look

at him/her in face, is not that man/woman infected with HIV?” However, she knows she is with an HIV-positive person. Hum!³⁵ When she tells me so, I feel sad, unhappy and disappointed. Anyway, Hum!³⁶ I don’t know whom to tell anymore and when! (Urban, female, 66 years old, 7 years on antiretroviral treatment)

Participants revealed that they had experienced situations in their communities where people had disclosed their HIV serostatus and experienced stigma; this made disclosure even more difficult.

7A: I know someone who said it and got stigmatized (Urban, female, 46 years old, 5 years on antiretroviral treatment)

In addition to stigmatization, participants explained that they experienced situations where people in their community gossiped about a person‘s serostatus, thereby indicating a lack of consideration and respect.

8A: (Speaking scornfully) Hum!³⁷ How can you not help saying that someone has a problem. You do not respect him/her and you do not give him/her much consideration.

(Urban, female, 23 years old, 4 years on antiretroviral treatment)

Another participant indicated that some people not only showed a lack respect towards them but also did not care about them, and this contributed to a reluctance to disclose their HIV serostatus.

5A: Also I refused to tell it to anyone because nobody cares for me! (Urban, female, 30 years old, 3 years on antiretroviral treatment)

Participants shared how judgement and stigmatization in their communities had an impact on their friendships and on the deep feelings they had towards other people. The hurt and

emotional abuse caused by other people contributed to the isolation of both men and women.

35 Expression of perplexity

36 Expression of doubt and mistrust

37 Expression of revolt