DATA PRESENTATION AND DISCUSSION OF FINDINGS 4.1 Data Presentation
4.4 Adherence to Treatment
4.1.5 Factors Affecting Adherence to Treatment
Quite a number of factors were examined for their influence on adherence. This section presents results from the analysis.
Self-efficacy
The personal belief of an individual in their ability to act in ways to change or improve a situation, in other words referred to as self-efficacy (measured as described in section 3.8), is an important factor in the explanation of adherence to treatment. The self-efficacy belief of the respondents was tested and results are presented in Table 4.10.
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103 Table 4.10: Percentage Distribution of Respondents’ Perceived Self-Efficacy According Selected Characteristics
Characteristics Perceived self-efficacy Total
(n)
% Low % High
Sex:
Male 50.4 49.6 127
Female 45.6 54.4 206
Educational Attainment:
No formal education 50.0 50.0 30
Primary 71.4 28.6 56
Secondary 45.3 54.7 150
Post Secondary 36.1 63.9 97
Age Group:
≤ 20 29.4 70.6 17
21 – 30 47.9 52.1 117
31 – 40 48.0 52.0 125
41 – 50 45.3 54.7 53
≥ 51 61.9 38.1 21
Marital Status:
Single 49.3 50.7 142
Married 43.9 56.1 114
Separated/Div/Widowed 49.4 50.6 77
Ethnic Group:
Efik 46.8 53.2 77
Ibibio/Oron/Anang 60.0 40.0 120
Other Cross River 27.7 72.3 101
Others/no response 62.9 37.1 35
Monthly Income:
≤ N5,000.00 68.0 32.0 74
N5001 – N10,000 50.0 50.0 24
N10,001 – N15,000 28.6 71.4 21
≥ N15,001 49.0 51.0 51
No response 34.3 65.7 137
Time on HIV Drugs:
Less than 1 year 52.2 47.8 136
1 – 2 years 48.9 51.1 139
More than 2 years 34.6 65.4 52
Time on TB Drugs:
3 – 4 months 55.0 45.0 242
5 – 6 months 33.3 66.7 18
7 – 8 months 16.7 83.3 36
More than 8 months 37.5 62.5 32
Total 47.9 52.1 100.0
Number 157 171 333
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104 On the whole, 52.1% and 47.9% of respondents indicated high and low self-efficacy, respectively in their ability to adhere to medication in spite of all obstacles. Slightly more female (54.4%) than male (49.4%) respondents exhibited high self-efficacy; more of the married (56.1%) than the singles (50.7%), and those separated/divorced and widowed (50.6%) showed high self-efficacy.
Distance to treatment
About nine in ten (92.9%) respondents lived in places where they must use a taxi or motorcycle to get to their places of treatment (details in Table 4.11).
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105 Table 4.11: Distribution of Respondents according to means of transportation to
Treatment Facilities by Selected Characteristics
Selected characteristics Distance to treatment centre Total Walking distance Need to take taxi/bike
Sex:
Male 7.3 92.7 123
Female 7.0 93.0 199
Educational Attainment:
No formal education 3.3 96.7 30
Primary 12.7 87.3 55
Secondary 6.4 93.6 141
Post Secondary 6.3 93.8 96
Age Group:
≤ 20 6.7 93.3 15
21 – 30 13.3 86.7 113
31 – 40 0.8 99.2 121
41 – 50 11.3 88.7 53
≥ 51 0.0 100.0 20
Marital Status:
Single 10.9 89.1 137
Married 6.3 93.7 111
Separated/Div/Widowed 1.4 98.6 74
Monthly Income:
≤ N5,000.00 12.1 87.9 99
N5001 – N10,000 0.0 100.0 24
N10,001 – N15,000 0.0 100.0 21
≥ N15,001 4.2 95.8 48
No response 6.9 93.1 130
Time on HIV Drugs:
Less than 1 year 6.8 93.2 132
1 – 2 years 8.9 91.1 135
More than 2 years 4.1 95.9 49
Time on TB Drugs:
3 – 4 months 6.5 93.5 232
5 – 6 months 16.7 83.3 18
7 – 8 months 5.7 94.3 35
More than 8 months 9.4 90.6 32
Total 7.1 92.9 100.0
Number 23 299 322*
*No responses were excluded
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106 Table 4.12: Mean Amount Paid on Transport Fare to and from Treatment Facilities by Selected Characteristics
Selected characteristics Mean amount (Naira) Total Sex:
Male 561.40 116
Female 508.70 186
Educational Attainment:
No formal education 362.50 28
Primary 414.90 47
Secondary 458.70 137
Post Secondary 747.20 90
Age Group:
≤ 20 234.70 17
21 – 30 504.20 100
31 – 40 532.20 118
41 – 50 661.50 46
≥ 51 576.20 21
Marital status:
Single 496.40 127
Married 497.40 103
Separated/Div/Widowed 631.50 72
Monthly Income:
≤ N5,000.00 496.70 86
N5001 – N10,000 240.40 24
N10,001 – N15,000 761.00 21
≥ N15,001 531.30 46
No response 566.60 125
Time on HIV Drugs:
Less than 1 year 387.60 123
1 – 2 years 631.40 124
More than 2 years 611.20 49
Time on TB Drugs:
3 – 4 months 549.30 222
5 – 6 months 313.30 12
7 – 8 months 571.80 34
More than 8 months 389.00 29
Total 528.90 302
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107 This has serious financial implications as respondents spend a mean amount of N528.90 on transport fare to and from the treatment centre (see details in Table 4.12). Given that appointments at the treatment centres are on a bi-weekly basis, the cumulative cost that respondents bear on transport fare only in a month will be more than N1000.00. This is more evident especially for those whose monthly income varies from five thousand naira and below but who spent a mean transport fare of 496.7 naira per visit to the treatment centre.
All respondents indicated that both HIV and TB drugs were free, but that they always paid for drugs to treat other symptoms or illnesses like malaria, which they may experience during this time of treatment. However, 47.4% of respondents reported to have spent extra money on feeding (see Figure 4.6 for details). This may have been more cost incurring for those who come from long distances, as 95.4% of respondents who spend money on feeding while in the treatment centres were those who also had to pay transportation to the centres.
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108 Figure 4.6: Proportion of Respondents Who Absented from Work to Attend Clinic and
Who Spent Money to Eat while in the Treatment Facility
47.4%
41.7%
15.4%
52.6%
58.3%
84.6%
Spend Money on Feeding while in Treatment Facility
Ever Absented from Work to get treatment
Ever Absented from Work because of Treatment Effect Yes No
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109 Participants were asked to give reasons why they missed their medication. Reasons given for missing drugs and scheduling problems can be seen in Figure 4.7. Although the study could not accurately calculate the cost of treatment (transport, tests, feeding, loss of man hours due to absence from work, among others), it is quite obvious that being on treatment is nevertheless costly to the patients. A calculation or experience of the costs could influence a patients treatment-taking or health seeking behaviour.
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110 Figure 4.7: Respondents’ Reasons for missing drugs
14.4%
15.5%
17.6%
18.2%
18.2%
19.3%
21.9%
22.5%
25.1%
26.2%
27.8%
28.9%
44.9%
45.5%
64.7%
Don't like drugs Felt better Had too many drugs Was out of drugs Felt sad Change in my schedule affected me Simply forgot Felt sick Don't want others to know Slept through drugs time Fasting and praying Feared effects of drugs Was busy Had not easten Was not home
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111 Respondents who reported not missing medication on account of any of the reasons made up 43.8%. This proportion represents respondents who reported they had never missed their medication at all. Figure 4.7 shows that, of the 56.2% who reported missing their medication, the highest proportion was for respondents who reported ‗was not at home‘ (64.7%) as the reason for missing treatment, followed by ‗had not eaten‘ (45.5%) and ‗was busy with other things‘ (44.9%).
Qualitative data examined what respondents meant by not being at home. Findings revealed that whenever patients are in the company of people (parents, siblings), they would not want to reveal their status by taking drugs, as depicted by these narrative from a case study:
Let me tell you the truth, the only times that I miss my drugs would be when I travel home to visit my parents and siblings. I do not want them to see me taking drugs, because I do not want to answer questions about my condition. So I usually do not carry my drugs when I go home. I have no problem telling you of my status, but my people will die if they knew.
Not that they will not support me, they will, I know. But they will worry too much . . . and start to pity me, which is what I do not want. One time I tried to take my drugs at home in secret and was nearly caught.
Similarly, another patient had this to say during an FGD session:
Sometimes when I travel to Aba (that was I think two times) I do not carry my drugs along. After those times, I have not missed my drugs again (FGD, female, University of Calabar Teaching Hospital, UCTH).
A further enquiry on why respondents could not take their drugs when they were not at home revealed an underlying problem bordering on fear of rejection from relatives and friends on knowing that they were infected by HIV and/or Tb.
Patients also complained of not being able to take the drugs because they had not eaten as at the time they were supposed to take them, and that they were usually advised to eat much food by the nurses. Getting support from loved ones in terms of providing what to eat is really important; and for some, this is being provided. A friend of one of the patients insisted during an IDI session that:
I sell food, and sometimes I make food for my friend to eat before taking her drugs. I do not want my friend to stay without drugs because there is no food. It is in those days that I used to feel that anybody infected deserved it because of their wayward living. Now I know better (IDI, female friend, food-seller).
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112 Similarly, a patient in a case study did not consider food availability as a problem when noting that:
I take my drugs even when I have not had food. The nurses said we should drink plenty of water and take our medicine if there is no food. At times, if my medicine finishes, and I have no money to go to the hospital, I go and borrow or walk. I take my medicine very serious and I carry it everywhere I go (Case Study, Male patient, 43).
In the same vein another patient had this to say:
I live with my parents. They provide me with all I need including food. I do not need to worry about getting help from people.
One unavoidable problem that can cause patients to go without their medication is in a time of industrial strike. A nurse in one of the hospitals reported how patients faced this challenge:
During strike, we were not available to give them drugs. The venue was changed and many people were not aware. This caused a lot of the patients to go without drugs during that period
It is a well known fact in Nigeria that labour struggle with the government frequently lead to a disruption of critical services, including those in the health sector.
Although it was not the highest, fasting and prayer accounted for 27.8% of why respondents missed their medicines, and appeared to be a strong factor responsible for level of treatment adherence. Some patients, and even nurses in the qualitative data, revealed that missing drugs because they were fasting and praying was mostly among patients who also sought faith healing. With these types of respondents, religious leaders usually advise them that drugs cannot heal them, but that only God can, if they went through fasting and praying.
Anxiety
Another important variable that was also considered as having influence on patients‘ degree of adherence to treatment of HIV and Tb was level of anxiety that the patients feel as a result of their illness state. Table 4.13 shows the distribution of respondents according to level of anxiety by selected characteristics.
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113 Table 4.13: Distribution of Respondents According to Level of Anxiety by Selected Characteristics
Characteristics Level of Anxiety Total
Not at all anxious
Somewhat anxious
Very anxious Sex:
Male 16.5 26.0 57.5 127
Female 16.0 25.7 58.3 206
Educational Attainment:
No formal education 16.7 26.7 56.7 30
Primary 3.6 23.2 73.2 56
Secondary 20.7 24.0 55.3 150
Post Secondary 16.5 29.9 53.6 97
Age Group:
≤ 20 47.1 29.4 23.5 17
21 – 30 10.3 24.8 65.0 117
31 – 40 16.0 20.8 63.2 125
41 – 50 20.8 37.7 41.5 53
≥ 51 14.3 28.6 57.1 21
Marital Status:
Single 14.1 23.2 62.7 142
Married 21.1 28.1 50.9 114
Separated/Div/Widowed 13.0 27.3 59.7 77
Ethnic Group:
Efik 9.1 26.0 64.9 77
Ibibio/Oron/Anang 6.7 26.7 66.7 120
Other Cross River 37.6 21.8 40.6 101
Others/no response 2.9 34.3 62.9 35
Monthly Income:
≤ N5,000.00 3.0 23.0 74.0 100
N5001 – N10,000 29.2 25.0 45.8 24
N10,001 – N15,000 9.5 33.3 57.1 21
≥ N15,001 19.6 13.7 66.7 51
No response 23.4 31.4 45.3 137
Total 16.2 25.8 58.0 100.0
Number 54 86 193 333
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114 A broad picture of the level of anxiety indicates that more than half of the respondents (58.0%) were very anxious, with 25.8% somewhat anxious, and only 16.2% reporting not being anxious at all about their health situation and life generally. However, there were significant variations between various categories. For example, level of anxiety tended to be higher among respondents with lower monthly income as the category ≤ N5000.00 had the highest proportion (74.0%) of respondents who were very anxious compared with 45.8% of those who earn 5001.00 to 10,000.00 naira. There were similar proportions of male and female respondents with regard to level of anxiety while single (62.7%) respondents exhibited higher level of anxiety than those who were married (50.9%). Single respondents still grapple with the possibility of being able to attract a suitable partner and to marry.
When people are infected, their first source of worry is whether their spouses or sexual partners are going to discontinue with the relationship. By virtue of their status, they stop a lot of things, which will normally give them pleasure and are almost solely dependent on their partners for the happiness they can get. If this is not forth coming, pressure comes, which can be an inhibitor to adherence. This story below clearly illustrates this point:
I have really stopped many things. I reduce how I go out. I regulate what I eat; I do not drink alcohol, I eat more of fruits and vegetables.
My boyfriend and parents are all caring. My friends who know of my status are helping me. I have not stigmatised. I pray more, and go to church frequently. Since I started taking drugs, I have been serious. I do not miss my clinic days and my health has improved. As you can see, if I do not tell you that I am positive you will never know.
However, she complained that:
The only problem I have for now is my boyfriend who is asking me to stop taking the drugs, because, according to him, I am not positive.
There was a time he seized my drugs for several days, and I could not take them during those days. He has been insisting that I go and see his pastor for prayers instead of taking drugs. . . What worries me is that my boyfriend is not positive. He has gone for test several times and the results have been negative. To be sincere, he has gone for test more than four times. He does not believe that I am positive. He still sleeps with me without using condom. All my appeals to him to use condom have not yielded any result (Case Study, Female patient, 26, trader).
Further details on anxiety relating to location of treatment centre, time on drugs and number of children are presented in Table 4.14.
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115 Table 4.14: Level of Anxiety by Location, Time on Drugs and Transport Cost
Characteristics Level of Anxiety Total
Not at all anxious
Somewhat anxious
Very anxious Location:
Rural 45.9 31.1 23.0 61
Urban 9.6 24.6 65.8 272
Time on HIV Drugs:
Less than 1 year 14.7 19.9 65.4 136
1 – 2 years 18.0 30.9 51.1 139
More than 2 years 11.5 28.8 59.6 52
Time on TB Drugs:
3 – 4 months 8.7 25.6 65.7 242
5 – 6 months 11.1 22.2 66.7 18
7 – 8 months 44.4 30.6 25.0 36
More than 8 months 40.6 25.0 34.4 32
Transport Cost:
Walking Distance 7.1 17.9 75.0 28
≤ N5,000.00 18.1 26.3 55.6 232
≥ N5,000.00 14.3 28.6 57.1 70
Total 16.2 25.8 58.0 100.0
Number 54 86 193 333
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116 The pattern is generally similar when level of anxiety is examined by location, number of children, transport cost to treatment centre and time spent on HIV and TB drugs. However, majority of the respondents who did not have to pay for transportation to treatment centre (75.0%), because the centre was not far from where they stay, were in the category of very anxious. This may be because they live within the neighbourhood and may be known by people around who see them going to the treatment health facility.
Social Isolation
Persons infected with HIV are often reluctant to disclose their positive status owing to fear of stigma and discrimination. This secrecy leads to social withdrawal from other people, and as such infected persons become socially isolated. This study examined social isolation as one of the factors that may have influence on adherence behaviour. Information on social isolation is presented in Table 4.15.
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117 Table 4.15: Respondents’ Feeling of Social Isolation by location, Time on Drugs,
Transport Cost and Number of Children
Characteristics Feeling of Social Isolation Total
Not at all Somewhat Very Location:
Rural 50.8 8.2 41.0 61
Urban 8.8 18.8 72.4*** 272
Time on HIV Drugs:
Less than 1 year 14.7 14.7 70.6 136
1 – 2 years 18.7 15.1 66.2 139
More than 2 years 11.5 28.8 59.6 52
Time on TB Drugs:
3 – 4 months 9.5 19.4 71.1 242
5 – 6 months 5.6 16.7 77.8*** 18
7 – 8 months 44.4 11.1 44.4 36
More than 8 months 40.6 6.3 53.1 32
Transport Cost:
Walking Distance 10.7 14.3 75.0 28
≤ N5,000.00 16.4 17.7 65.9 232
≥ N5,000.00 15.7 15.7 68.6 70
Number of Children
None 20.4 15.7 63.9 108
1-2 children 8.0 17.0 75.0 112
3-4 children 21.1 19.7 59.2 76
5 children+ 21.6 13.5 64.9 37
Total 16.5 16.8 66.7 100.0
Number 55 56 222 333
*** Significant at p<0.001
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118 Significantly, more respondents who were resident in the urban areas experienced more social isolation than those in the rural areas as (72.4%) and (41.0%) respectively, reported feeling very socially isolated. Similarly, more respondents who had spent 5-6 months on Tb treatment (77.8%) than those who were 3-4 months (71.1%), 7-8 months (44.4%) and those who were more than eight month (53.1%) to feel very socially isolated (further details in Table 4.15).
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119 Table 4.16: Distribution of Respondents’ Feeling of Social Isolation by Selected
Characteristics
Characteristics Feeling of Social Isolation Total
Not at all Somewhat Very Sex:
Male 15.0 17.3 67.7 127
Female 17.5 16.5 66.0 206
Educational Attainment:
No formal education 16.7 13.3 70.0 30
Primary 3.6 10.7 85.7* 56
Secondary 21.3 16.0 62.7 150
Post Secondary 16.5 22.7 60.8 97
Age Group:
≤ 20 52.9 23.5 23.5 17
21 – 30 12.0 13.7 74.4** 117
31 – 40 14.4 16.8 68.8 125
41 – 50 20.8 20.8 58.5 53
≥ 51 14.3 19.0 66.7 21
Marital status:
Single 15.5 15.5 69.0 142
Married 19.3 14.9 65.8 114
Separated/Div/Widowed 14.3 22.1 63.6 77
Ethnic Group:
Efik 9.1 16.9 74.0 77
Ibibio/Oron/Anang 5.8 19.2 75.0 120
Other Cross River 38.6 13.9 47.5 101
Others/no response 5.7 17.1 77.1*** 35
Monthly Income:
≤ N5,000.00 2.0 14.0 84.0*** 100
N5001 – N10,000 20.8 33.3 45.8 24
N10,001 – N15,000 14.3 19.0 66.7 21
≥ N15,001 19.6 25.5 54.9 51
No response 25.5 12.4 62.0 137
Total 16.5 16.8 66.7 100.0
Number 55 56 222 333
*Significant at p<0.05; ** Significant at p<0.02; *** Significant at p<0.001
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120 There is no difference in the level of anxiety between as similar proportions male (67.7%) and female respondents (66.0%) experienced very high social isolation. However, significantly, more respondents who earn 5000 naira or less monthly (84.0%) experienced more social exclusion than those in other income categories (details in Table 4.16).
Qualitative data provided a deeper insight into the social isolation that patients feel. A patient recounted a rather frustrating and potentially dangerous situation:
What really gave me headache was that I needed to marry because I was still single. I knew I had to have a rethink about my life. Above all, the counselling I received really helped me not to worry myself too much.
But I told my girlfriend and she got very upset and decided to leave me.
That was when I felt worried. I felt like just falling down and giving up living. I saw myself as not worthy of life any longer. I was nervous, worried and restless. I thought about a lot of things, whether to kill myself and then I made up my mind to spread the disease. My belief was that somebody gave me the disease and spoilt my life, so I had to give it to another person. But through counselling I changed my mind and did not do so, it was, however, not easy. Whenever I think of that moment, I get depressed for days on end. During such times I may miss my drugs, but it does not happen frequently.
Another patient has faced social exclusion from friends as a result of HIV infection and had this to say:
Some of my friends stopped being close, but my very good friends still treat me well. Just that the level at which we were is not like that again.
Alcohol use
Use of alcohol may be important in understanding risky sexual and other behaviours which hold negative health consequences. As such, information on respondents‘ rate of alcohol consumption was collected. Only 6.0% of all respondents reported that they take any drinks with alcoholic content as shown in Figure 4.7.
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121 Figure 4.7: Proportion of Respondents Who Had any Alcoholic Drink
Some alcoholic drink
6%
No alcoholic drink at all
94%
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122 Of the 6.0% who takes alcoholic drinks, a negligible proportion (less that 1.0%) took more than one bottle of alcoholic drink in the one month preceding the study. This may not constitute much of a problem in terms of being a hindrance to treatment adherence.
Family Support
This study also investigated the part respondents‘ social capital play in maintaining an acceptable level of treatment adherence. Figure 4.8 shows results of respondents who lived with family or friends and who had received any form of support from them since they started treatment.
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123 Figure 4.8: Respondents who Live in the Same Household with Family and Friends and who Have Received any Support
71.7%
3.9%
89.9%
21.3%
96.1%
10.1%
Live in same household with family member Live in same household with friend Ever Received support from famikly or friend
No Yes
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124 Table 4.17: Distribution of Respondents by Type of Support Received from Family and
Friends
Type of support Frequency Per cent
Financial 139 25.1
Advice 182 33.1
Reminded me to take my drugs 64 11.5
Physical care and support 30 5.4
Nutritional/feeding support 69 12.4
Income generating activities 3 0.5
Spiritual/prayers 67 12.1
Multiple responses allowed
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125 Data on the type of support received revealed that 25.1% of respondents received financial support as can be seen in Table 4.17. The most mentioned support received by respondents was advice with 33.1% in a multiple response variable. Equally important were spiritual/prayer (12.1%), nutritional/feeding support (12.4%), and reminders to take drugs (11.5%). Financial support was a generally recognised and discussed issue among participants in this study. For example, a 38-year old, married male participant in a case study recognised the help he received from friends thus:
I tell many of my friends who care to know about my health situation. I have told many of them that I am positive. Many assisted financially and supported me in different ways to get married. They . . . from time to time, send money for me and my wife. They visit me. I thank God that I did not feel ashamed to tell them about my status.
An important point here is that the financial support does not necessarily have to be geared towards treatment, but to the particular needs of the infected person at the time; and by removing the burden, their concentration in other things, including medication, can improve.
A point that must be made here is that inasmuch as supporting someone on HIV and TB treatment financially can be a facilitator of adherence, it can also be a barrier if there is a feeling that they are a burden to their friends and family. A male participant was unhappy that
‗instead of contributing to helping the family, as the first son should, I am the one depleting family resources’. Such feeling of guilt in receiving financial help from friends or family members can have unanticipated consequences of becoming a barrier instead of facilitator.
Nevertheless, participants mainly discussed it in favourable terms with regards to adherence.
When an infected person feels that the support is mechanical without any real feeling of love and affection involved, instead of being motivated they get depressed and let down. A 54 years old widow who lost her husband three years prior to the study insisted that she ‗cannot tell my children or anybody that I am infected and on drug’ because what they will give is hypocritical. She insisted that:
‗No one will be real with you again; people will pretend to love you so that they can sit with their friends later and gossip you. It is better to die instead of telling people about your situation, because no one really cares for you once they know. Maybe my late husband would have helped, but now he is dead and gone. I can take care of myself.
There were contrasting messages coming from giving spiritual support and prayer. Whereas one can feel reassured in the grace of God and his power to heal, the feeling that one