Indicators of quality of life
Quality of life was discussed in terms of wellbeing and happiness influenced by good health, having money, good living environment, good social relations and emotional wellbeing. All of the study participants (taking ART and not taking ART) interviewed defined QoL in a way similar to World Health Organization (WHO) definition of health as “a state of complete physical, mental and social wellbeing and not merely absence of disease or infirmity” [
11].
One 51 year-old man, taking both VL and ARV drugs said “QoL is about being healthy, having good energy and enough money.” A 42 year-old man, taking both VL and ARV drugs remarked “QoL is when one has health, access to VL treatment centers and money. If I have money and access to VL treatment center, I am able to treat my VL relapse immediately; my QoL is good”. A 39 year-old man, taking only VL drug and not in ART said “QoL is about not working in hot areas (low lands) and having work in cold areas (high lands), having shelter”. A 33 year-old man, taking both VL and ARV drugs said “QoL is about having money, not doing laborious work, free from any substance use or abuse such as chewing khat, smoking cigarette and drinking alcohol and not being coinfected by VL”. Another 29 year-old man, taking only VL drug and not in ART said “It’s about being cured from VL, able to create my own business and earn money and marrying a woman and have children”.
The majority (16/20; 80%) of the study participants in both groups mentioned availability of money is very much vital for their wellbeing and hence a good QoL, and for example “for me after I finished VL treatment, I don’t have money for transport to go back to my residence. To cover my daily expenses I need to have money” (34 year-old man, taking only VL drug and not in ART) and “I need money to pay my house rent, for food and to buy clothes that are vital for sustaining my life” (42 year-old, taking both VL and ARV drugs). One 32 year-old man, taking both VL and ARV drugs said that “I am very much worried about my future life after I am discharged from this VL treatment center. Unlike previous times I don’t have enough energy to work as a daily laborer in hot areas (low lands) because VL infection severely weakened my body. On the other hand, in order to do my own job, I don’t have enough money. I am very much worried about how to get money for my daily subsistence. It is very much difficult to be happy and lead good QoL when you have no money”.
All of the respondents in both groups stated that good health and money were crucial to their wellbeing and QoL. Most of the participants were migrant daily laborers. They were more frank when discussing money as a source of wellbeing. For instance, one 34 year-old migrant daily laborer resided in May-kadra district who are taking only VL drug and not in ART said that “my choice of living in May-kadra is because there is job opportunity and I am able to earn money” and also one 33 year-old migrant daily laborer residing in Humera district who are taking both VL and ARV drugs stated “In order to sustain my income, I am working laborious work in very hot area of Humera districts”.
Almost all (19/20; 95%) interviewees in both groups highlighted living environment as a cornerstone of their not wellbeing and QoL, for example “I have resided and spent many years in very hot area because I can be easily employed as a daily laborer in large farms and I can generate money easily. It is not suitable for health because there are diseases like malaria and VL” (42 year-old man, taking both VL and ARV drugs) and “I am living in a hot and VL disease prevalent area. For this reason I am not happy in my living environment and withstanding all those problems I will continue working as a daily laborer to sustain my income” (33 year-old man, taking both VL and ARV drugs). One 29 year-old man taking only VL drugs and not in ART said “I am working as a daily laborer moving from one hot area to the other hot area in order to generate money for my daily expenses. Those areas I have visited were very hot and were not suitable for health because there are different diseases like malaria, VL and diarrheal diseases”.
Lack of happiness due to living environment was reported by majority (18/20; 90%) of the respondents in both groups. For instance, one 39 year-old man, taking only VL drugs and not in ART said that he is fade up of working as daily laborer in “berha”, translated as “very hot areas or low lands”. When asked what exactly he meant by this, he explained that these areas are extremely hot and there are different diseases like VL. Therefore, working in those areas were made me coinfected with VL and it makes me very much weak.
Social relationships including support from immediate family reported by few (2 patients or 10%) of the respondents in both groups as a key to their wellbeing, for example, “I have supportive family, my mother’s wellbeing and successful friends around me makes me happy” (52 year-old man, taking both VL and ARV drugs) and “a good relationship with my wife and the care I get from my brother makes me happy” (45 year-old man, taking only VL drugs and not in ART).
Emotional stability was a concern among a few (1 patient or 5%) of those interviewed. A 45 year-old man, taking only VL drugs and not in ART described QoL as “Living the life without worries is having good QoL”. As happiness was stated by all of the participants, we asked them further what was meant by happiness for VL-HIV coinfected patient. Happiness was seen as indicator of QoL. The main factors remarked as a source of happiness were to get cured from VL disease and the free treatment they got from the treatment facilities. The other factors mentioned as a source of happiness included financial wellbeing. These findings were consistent across all ages and for both groups (with and without ART) of the participant.
Almost all (19/20; 95%) of the study participants in both groups clearly mentioned that recovering from VL disease and the treatment centers where they have received care were the source of their happiness. One 25 year-old man taking only VL drugs and not in ART said “my source of happiness depends on being cured from VL disease”. Another 34 year-old man, taking only VL drugs and not in ART stated that “the only way to get back my happiness depends on being cured from VL disease”. A 33 year-old man, taking both VL and ARV drugs remarked “my happiness entirely depends on recovering from VL disease. I am also very much happy by free treatment that I got from this treatment center”. One 41 year-old man, taking both VL and ARV drugs said that “My source of happiness entirely depends on the fact that I am cured from VL disease and the support I got from the treatment center. In the last 5 years I had experienced eleven times VL relapse and in all those relapses this treatment center was giving me free treatment”.
All (20 patients or 100%) of the participants in both groups were mentioned lack of economical wellbeing as a major contributor to their unhappiness. According to one 34 year-old man, taking only VL drugs and not in ART said “In order to lead my life properly I need money and money is everything. I don’t have money to cover my daily expenses. If I don’t get money to cover the cost of a transport from the treatment center to my home town then I will be a beggar”. A 42 year-old man, taking both VL and ARV drugs said “money is a source of my happiness. For instance, if I didn’t have money I wouldn’t reach here to follow my treatment. Hence, when I have money in my pocket I do have a better happiness. Currently I don’t have money and I feel very much angry”. A 51 year-old man, taking both VL and ARV drugs said “I feel very much angry when I have no money; I am not a happy person because I don’t have money to pay for house rent and to buy my daily food consumption”.