Background
Methods
Ethical considerations
Results
Quantitative results
Variable | Women (N = 218) | |
---|---|---|
N | % | |
Age
| ||
19–29 years | 67 | 31.0 |
30–39 years | 103 | 47.7 |
40+ years | 46 | 21.3 |
Education
| ||
Primary and below | 166 | 77.9 |
Secondary and higher | 47 | 22.1 |
Marital status
| ||
Single | 66 | 30.3 |
Married | 57 | 26.2 |
Divorced/separated/widowed | 95 | 43.6 |
Household socioeconomic status
| ||
Poor | 62 | 28.7 |
Non-poor | 154 | 71.3 |
Relationship of primary caregiver
| ||
Parent | 109 | 50.0 |
Spouse | 27 | 12.4 |
Brother/sister | 54 | 24.8 |
Children | 12 | 5.5 |
Other relative | 11 | 5.1 |
Not related | 5 | 2.3 |
Place where care was sought
a
| ||
Home | 66 | 30.4 |
Traditional healer | 37 | 17.1 |
Over-the-counter | 97 | 45.8 |
Government health facility | 96 | 45.3 |
Private health facility | 80 | 36.7 |
Faith-based facility | 16 | 7.3 |
Number of contacts with formal health services a month prior to death
| ||
None | 22 | 10.8 |
1–2 times | 132 | 65.0 |
3 and above times | 49 | 24.1 |
Place of death
| ||
Home | 130 | 60.5 |
Health facility | 80 | 37.2 |
Other place | 5 | 2.3 |
Year of death
| ||
1996-2000 | 4 | 1.9 |
2001-2005 | 64 | 30.5 |
2006-2010 | 142 | 67.6 |
Variables | Contact with formal health services (N = 196) | |||
---|---|---|---|---|
Crude ORs | 95% CI | Adjusted ORs | 95% CI | |
Poverty status
(Ref = non-poor)
| ||||
Poor | 0.2** | [0.1 – 0.6] | 0.2*** | [0.1 – 0.5] |
Age of deceased women
(Ref = 19–29 years)
| ||||
30–39 years | 1.1 | [0.4 – 2.8] | 1.0 | [0.3 – 2.8] |
40+ years | 3.1 | [0.6 – 15.4] | 3.9 | [0.7 – 21.8] |
Marital status
(Ref = Never married)
| ||||
Married | 0.7 | [0.2 – 2.5] | 0.7 | [0.2 – 2.4] |
Divorced/separated/widowed | 0.6 | [0.2 – 1.7] | 0.5 | [0.2 – 1.8] |
Education
(Ref = Primary and below)
| ||||
Secondary and higher | 2.9 | [0.6 – 12.8] | 2.6 | [0.6 – 12.4] |
Variables | Sought care from more than one place (N = 210) | |||
---|---|---|---|---|
Crude ORs | 95% CI | Adjusted ORs | 95% CI | |
Poverty status
(Ref = non-poor)
| ||||
Poor | 1.4 | [0.7 – 2.8] | 1.5 | [0.7 – 3.0] |
Age of deceased women
(Ref = 19–29 years)
| ||||
30–39 years | 0.6 | [0.3 – 1.3] | 0.5 | [0.3 – 1.2] |
40+ years | 0.4* | [0.2 – 0.9] | 0.3* | [0.1 – 0.8] |
Marital status
(Ref = Never married)
| ||||
Married | 3.3** | [1.4 – 7.5] | 3.6** | [1.5 – 8.8] |
Divorced/separated/widowed | 1.7 | [0.9 – 3.4] | 1.8 | [0.9 – 3.7] |
Education
(Ref = Primary and below)
| ||||
Secondary and higher | 0.8 | [0.4 – 1.5] | 0.9 | [0.4 – 2.0] |
Qualitative findings
Poor understanding of HIV-related opportunistic infections
“The time when she was sick she stayed here at home and we brought for her the drugs. She also could buy drugs from the chemists. We thought it was normal chest complications, but it was the critical chest complications that killed her.” (Mother to deceased)“I went to see her but on asking her what the problem was she told me she had stomach ache and headache. But on telling her that I take her to hospital she refused.” (Son to deceased)“Before she died, I messed up, as I got late in intervening as she had severe diarrhoea and within that week she died, I could have taken her on Monday but I did not think it was serious. I got late and took her to the hospital on a Friday.” (Sister to deceased)
Medical pluralism
“My wife began to have body pain, then I bought for her medicine from the shop, but she never got better. I took her to xxxx Health Centre where she was treated and we came back home, but for one month, she never got well. She was rushed to xxxx district hospital and given medicine. She came back home and stayed for about 3 months, and she did not get well; the stomach started swelling again. When it was swollen, instead of taking her back to the hospital, we took her to witch doctors. But one of the ladies told me to take her back to the hospital, and I took her back to xxxx district hospital, and she was tested. She came and told me she had been found with a virus.” (Husband to deceased)“You know in this area, when a person becomes sick, our first thought is to see a witchdoctor. So for this illness, we used to mix medical doctor, witch doctor for the first 5 years, but when she went to xxxx Hospital, it was found out she has typhoid.” (Daughter to deceased)“There are the witchdoctors here who cheat people. That is where she was taken. Also she could be brought a witchdoctor at home, who could tell her it is this place that is the cause. Then it was realized that is not the cause.” (Neighbour to deceased)
Non-disclosure of HIV status and caregiver role of women
“Sometimes I feel that if she was open and had said early enough, she could be alive. This is because we have another cousin who is also HIV positive and goes to hospital at xxx and has given my phone number there, so that if she is in any sort of need and I am contacted, she can be assisted immediately. But xxxx was quiet and did not disclose her problem.” (Friend to deceased)“She went to the hospital and was given drugs to help her. She was also tested for HIV and told she has but she said she does not want to be admitted as she has children who will suffer and the mother is old to take care of the children.” (Friend to deceased)“She was seriously sick but could go to work while sick and after coming home she could tell me that the work was bad until I told her to leave the job and stay with us here at home. She was refusing to go to the hospital because of fear of being tested and to be told her status. But I talked to her until she agreed to go to the hospital four months later.” (Mother to deceased)
Access to health services
I came home and explained to her about the illness, and told her we should begin the clinic, which we began in February 2006, and she even began going for clinics alone, but we felt it was far, because of the bus fare and the bills.” (Sister to deceased)“There are no vehicles in the area so we had to stay home.” (Mother to deceased)“So she told me to take her to the hospital, but insisted I take her to another hospital at xxxx. So we travelled on a Friday, but we found it difficult to get to the facility. It had rained badly, so the place was swampy, and we could not pass since I was using a bicycle to transport her. It was impassable; we discussed and decided to go to another facility xxxx. But we went to this other facility on a Sunday.” (Brother to deceased)
“When she took the medication, she started having diarrhoea a lot, and we had been told to take her for other tests, but we did not take her. When we went there, we found there was no doctor.” (Daughter to deceased)“She was given Malaria medicines as they did not have equipment to examine her.” (Daughter to deceased)“The patient was referred to xxxx District Hospital because the hospital did not have supply of drugs.” (Son to deceased)“For her the illness bothered her so much because she had no money for her treatment and at the hospital they expected money plus for the drugs. When she went to the hospital she was told to first look for money and then come back. She was ill and could not get the drugs. When she came home she could become sick and got seriously sick.” (Husband to deceased)
HIV stigma, denial, and low HIV risk perception
“My friend had a problem of coughing and back ache and her chest had pains so I used to advise her to know her HIV status, I used to tell her ‘the way I see you coughing, your cough is too deep and let me take you to xxxx health facility so that you can know your status maybe its TB’ [tuberculosis] but she was tough headed, she didn’t go. She said she is not ill, that illness is only malaria so I let her be and she got worse, so for some time she avoided me because she knew I would take her there (xxxx health facility). She wanted to go to xxxx and xxxx health facilities and the one who took her is another lady called Florence (fictitious name).” (Friend to deceased)You know the first time she was told she was HIV positive she denied saying she is not positive; she denied up to the last moment when she died. Later there was one hospital sister who informed my brother’s wife that she was HIV positive.” (Neighbour to deceased)“When I took her to xxxx hospital she was counselled. Then I took her for testing. Her blood was tested when I was with her and I was told she is HIV positive. After she was told she is HIV positive, and by then she was severely ill, she was shocked from the time she got to know her status. After being told by the provider, she did not stay for long. I even had to force her to take the medicines, though she would refuse.” (Daughter to deceased)“I told her she was to take the medicine as the times we are in today are bad times, as she is not the only one who is infected with HIV, but others too have HIV. But she still insisted she will not take the medicines. All the same, we took the medicine with us at home but she could take some medicine and hide others. So I spoke with her again, told her ‘you know I am your mother, so instead of dying and leaving your children to die, take this medicine’ but she said she will not take as she knows it’s her husband who has infected her with the HIV virus. So her condition became worse.” (Mother to deceased)
Lack of family support during illness period
“Another thing was lack of food, she used to take medicine and there was no food. So, we would take turns bringing her food, three of us, as she had nothing. It became hard and the chairman took her to hospital so that she could receive better care.” (Friend to deceased)“She was treated at the nearby dispensary xxx. Due to insufficient supply of food, she was not able to cope as well as meet the family food needs since the children’s father was also not there.” (Child to deceased, whose sex cannot be determined from the transcript)“Our daughter was married at xxx; she stayed there and gave birth to three children. The husband was staying far from her, but whether he comes or not life must continue. As years unfolded, she seemed to be getting older, the husband decided to marry another wife and that’s when he started neglecting her and problems started. She then decided to come back to bring her problems here.” (Mother to deceased)“When she got ill the first time, the husband did not act fast enough to take her to hospital, and so the illness advanced too fast.” (Neighbour to deceased)