In reviewing the effects of being diagnosed HIV positive on the capacity to fulfil social obligations, three main patterns were observed. First, being HIV positive and the knowledge of one’s HIV status did not have any major impact on one’s ability to fulfil the roles for a
115 substantial number of participants. Second, being diagnosed HIV positive had the effect of helping PLHIV regain the capacity to work and therefore ability to fulfil the socially expected roles. Finally, being HIV positive resulted in diminished capacity to work. This information is contained in Table 4-2.
Table 4-2: Effects of being HIV positive on capacity to fulfil social obligations by gender Effects on capacity to fulfil social obligations Female (N=30) Male (N=19) Total
Retained capacity to work 9 12 21
Regained capacity to work 16 5 21
Diminished capacity to work 9 4 13
Total Responses (multiple responses possible) 34 21 55
The findings from both in-depth interviews, FGDs and KIIs are presented in the following sub-sections beginning with retained capacity to work.
4.3.1 Retained Capacity to fulfil Social Obligations
Despite being diagnosed as being HIV positive, some PLHIV indicated that this did not in any way interfere with their capacity to perform daily activities and to fulfil their social obligations. For some, changes were only initially observed before they knew their status, when they often fell sick-and-off, but that was not very serious. In essence, they did not notice any remarkable changes and after being placed on treatment and care and attaining full recovery, they were able to carry on with their activities normally.
Compared to female, more male participants reported not experiencing notable changes to their ability to carry out their duties as usual. The following statement by one of the female participants was typical:
No...I still perform my tasks...I have never noticed any problem with performance of tasks. I have not noted any problems with task performance, to be honest. I just do them till the point that I feel exhausted, because getting tired is normal. That is when I can take some rest.
Sometimes, I can just work fulltime from morning till evening, without feeling tired. So when it is about 5pm or 6pm so I can decide that "now let me take a bath and rest. Perhaps my mind can now be clear." But any fatigue or that I am weak based on medication, that I have not noticed any setback (R5: widow, aged 26-35 years, 139).
116 The participants seemed to lay emphasis on the fact that they were able to perform the duties expected of them like any other person, just like the people who are not infected with HIV.
This was to underscore the fact that they did not notice any meaningful differences. The following statement by a male participant is illustrative:
Yes there are no major changes, I...I...I wake up every morning and do my duties as normal, as any other person, and there is no any change. There is nothing that distinguishes me from other people just because I am living positively. I am doing my things the normal way, I go to places where people go in the normal way. There is no clear...clear distinction between me and someone who is not living positively (R21: married man, aged 26-35 years, 30).
Discussions with FGD participants and key informants corroborated the above sentiments of in-depth interviewees. A male youth participant in an FGD narrated his experience as a student in both primary and secondary schools in the following terms:
Mine when I was in class eight, I never knew I was going to perform. I performed and went to secondary school. When I was in secondary school I never knew I was going to perform. Now I am in Maseno [a university in western Kenya]. Now that I am in Maseno, I do not know if I am going to perform (FGDMY-001, 234).
A key informant in highlighting the role of ARVs as critical in sustaining capacity to fulfil social obligations averred that: “There I do not think there are any serious changes…When someone is well, provided that one enrolls into care and stays alive, I do not think there can be any change [in capacity to fulfil social obligations]” (KII-003, 59, 61).
The participants under this category did not experience any disruptions to their ability for normal functioning that could be attributed to their being HIV positive. In spite of having been diagnosed as HIV positive, they still perceived themselves as capable of effectively performing their daily activities and fulfilling their social obligations. They also did not notice any differences between themselves and other people who were HIV negative or who had not yet known their HIV status. As such, they considered themselves as normal.
4.3.2 Regained Capacity to fulfil Social Obligations
The other major pattern was regained capacity to work and to fulfil social obligations. Some of the participants indicated that before they knew the reason for their recurring illnesses and being put on ARVs, they were not able to perform many of the normal daily activities expected of them. Due to constant illness, they had lost strength and stamina to do their daily activities and were often fatigued. One 31-year-old, single female participant indicated that “I
117 did not have strength. I was constantly fatigued” (R26: 31-year-old single woman, 81). The following narrative by a married female participant aged 26-35 years captures the sentiments of most of these participants, both male and female:
Since I got to know about my HIV status, I can see that I am living well. I carry out my duties well, and I do not see any problem...because that you could find, before I got to know my status, I would fall sick on-and-off that I could not go on with my duties. So since knowing my status I have not lain on bed because I am sick [have known my status] since 2006. I have not been confined to bed on account of being sick. I have not been admitted, except when it is a small case of some slight flu, some light case of malaria. But I go on with my daily life (R1:
married woman aged 26-35 years, 69).
As the statement indicates, this female participant’s health status underwent a marked improvement compared to the past after she got to know her status. She was able to resume her normal activities as a result. Her experience is representative of many other participants who after knowing their HIV status and subsequently being enrolled into care, recovered physically, regained their strength and resumed their daily routines. According to a 31-year-old married man: “I find that now is when I am more effective because compared to the past, I did not have a lot of capacity. But nowadays there is a lot of strength because of the medications we are using” (R16: 31-year-old married man, 82-83).
Being on medication was crucial in helping these participants to recover a state of normalcy.
According to 31-year-old married female participant:
Personally, I also have a change because I can carry out my chores. In the morning after waking up, I take my medications, then I just do my duties and eat as usual like any other normal human being can do. I prepare my things, my children are fed, I clean my things, and I do my things because I am well. It is only that now, a child, someone who has a small child must have some bodily changes because now I must see to it that that child of mine has proper nutrition (R12: 31-year-old married woman, 51-53).
As this participant’s account indicates, PLHIV are not any different from those not infected with HIV since both categories are preoccupied with the same social obligations such as
‘doing ones things’, ensuring that children are taken care of and fed and ensuring that the general cleanliness of the home is observed (R12: 31-year-old married woman, 51-53).
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4.3.3 Diminished Capacity to fulfil Social Obligations
The third pattern of effects on capacity to fulfil social obligations involved those who recognized that they were still able to perform some of their activities however with certain limitations. Some participants reported only being able to perform certain of their duties but not others due to diminished strength. For instance, a 35-year-old man indicated that he could not now perform tasks “requiring a lot of energy” (R10: 35-year-old married man, 61).
Others noted that they could not work for long periods of time like in the past. What was clear is that they had lost their full strength and had to live in the present recognizing that they were delicate. They were therefore forced to accept the fact that they could not match their previous capacities. A 35-year-old married man reported that: “But I came to find that the strength I had in the past is now going down. Whatever I would do with a lot of energy, I now could not. I found that my strength is diminished” (R10: 35-year-old married man, 37). A 36-year-old widow had this to say:
Yes you just perform them. So you just perform them because you do not have an alternative because you have been befallen by the misfortune of being both the driver and conductor [the sole-breadwinner]…But really, you cannot really work the way you used to work as in the days when you were still well...You realize that you have somehow lost your strength slightly (R11: 36-year-old widow, 74-83).
In a summary of the accounts of some FGD discussions prepared by one of the research assistants, it was found that “HIV affects the person’s ability to carry out household roles in case of being down” because “at times one gets fatigued to carry out other duties as usual.”
Moreover, “the drugs react differently with the body as they enhance fatigue and pain, thus affecting the activities performance of the individual” (RA, FGD Summaries, 14-15).
According a key informant, in findings that corroborate the above sentiments, there are activities that can be performed and some that are no longer easy to be performed by the PLHIV. The KII participant noted that:
Well, I can say that it depends on what someone is doing. Well there are some activities that are so hard and require a lot of energy. You may find that someone with the strength which he had during the times when he was HIV negative, so you realize when they turn positive you find his strength is slightly reduced (KII-003, 55).
Although they were not able to work with the capacities of the past, yet the realities of daily life require that PLHIV must still be busily engaged with their affairs since no one will fully take over their responsibilities. As the 36-year-old widow (R11) avers, she has to keep
119 working to sustain herself and her family for lack of a viable alternative.