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A Mixed Method Approach To Quality Of Life Research Paper

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  • Aims

    Were to: (1) translate the FAHI questionnaire from English to Swahili; (2) elicit the perception of PLWHIV on how the disease has impacted on their day-to-day life for the purpose of evaluating the FAHI’s content validity; and (3) evaluate the questionnaire for relevancy, word clarity and content coverage. The evaluation sought to establish the content validity of the instrument, clarity of the items and relevancy of the items in capturing information related to the physical, emotional, functional, social and cognitive functioning domains of well-being. The questionnaire was forward translated by two independent translators after which a six-member panel was engaged in the harmonization and adjudication process. Structured open-ended questions aimed at capturing the perceptions of PLWHIV on the impact of HIV infection and its treatment on their life in the various domains of well-being were developed. Four questions evaluating the adapted FAHI questionnaire for relevancy, word clarity and content coverage were included at the end. In evaluating for content coverage of the adapted FAHI, participants were asked whether, in their opinion, they thought the questions asked covered the challenges they encounter in the domains of physical, functional, emotional, social and cognitive functioning.

    Sample

    A sample of 38 study participants receiving services at the CCRC was randomly selected to participate in the qualitative study. Male and female participants were recruited who were aged over 18 years; provided consent for their participation; were aware of their HIV status; and on antiretroviral medication. The same participants were involved in piloting of the translated FAHI questionnaire. Table 2 shows the demographics of participants. Majority of the respondents were females (n = 27, 71%), married (n = 22, 58%); only 29% of the respondents had any form of secondary level education.

    Methods

    An interview was conducted in a private, quiet room using structured open ended guidelines. The responses were recorded using either a voice recorder (with the participant’s permission) or through note-taking (when the participant refused to be recorded). Both the translated 5-point and 3-point Likert versions of the FAHI questionnaire were piloted after each interview session. The administration of the 3- or 5-point scale was carried out on different participants selected randomly from the recruited sample. If in one interview the 3-point version was piloted, the 5-point version would be administered in the subsequent interview.

    Procedure

    The interviewer first presented a description aimed at explaining the purpose of the interview to participants. The interviewer then asked open-ended questions aimed at understanding the participant’s perception of the impact of HIV infection on the life of PLWHIV in general. The full version of the FAHI was then administered after which participants were requested to evaluate each item. Participants were also requested to make suggestions on any other information that might have not been captured by the items but considered to be of great importance among PLWHIV. They were also requested to single out items they thought were not relevant.

    Results

    We summarized the participants’ responses to questions targeting evaluation for relevancy, word clarity and content coverage of the adapted FAHI. When evaluating item relevance, most respondents (34 out of the 38, 90%) said they were satisfied with the questions asked and that the questions were relevant:

    “They are good and will give you what you want to know about challenges people living with HIV undergo”

    (Married, female participant, 32 years old)

    A few of the participants (4 out of the 38) expressed concerns with some items in the questionnaire. The items “I am enjoying the things I usually do for fun”, “I am content with the quality of my life right now”, “I feel sexually attractive” in the Functional Wellbeing (FWB) domain and “I am satisfied with my sex life” in the Social Wellbeing (SWB) were in their opinion not appropriate to ask patients already bearing the burden of living with HIV infection.

    Participants were asked whether they understood the questions after they completed each sub-scale. This was done so as to evaluate word clarity of the questionnaire. Most respondents (37 out of 38) reported understanding the questions. Only one of the respondents said:

    “…a few are difficult to understand”

    (Separated, male respondent, 42 years old)

    A number of participants had difficulties distinguishing the options of “A little bit,” “Somewhat” and “Quite a bit” on the 5-point Likert scale. All participants reported that the questions covered the issues faced in these domains. Most of them were able to remember some of the questions asked and quoted such in explaining their level of agreement. None of the participants had any suggestions of what had been left out of the questionnaire which would have been important to ask.

    The results of the piloting informed our decision to use a 3-point, rather than the 5-point Likert scale during phase three as this would ease comprehension of the rating options. The choice of the 3-point Likert may make our data more valid given the difficulties of administering high point Likert scales to low-literate population reported elsewhere [42]. Given that only a small percentage of our participants expressed concerns with some of the questions a decision was made to retain all the items in the original questionnaire.

    Perception of PLWHIV on how the disease has impacted on their day to day living.

    FAHI items try to establish the quality of life in five domains of well-being by scoring a response using a Likert scale. In establishing the perception of our study participants on how HIV infection has impacted their day-to-day living, we wanted to find out if they would report issues elicited by items in the questionnaire as a way of evaluating the content validity of the adapted FAHI.

    In the process of data analysis, we grouped participants’ responses into four main themes: impact on physical, functional, emotional and social wellbeing. There were also other emerging issues brought up by participants as a result of living with HIV-infection which were not covered under FAHI items. We grouped these under a separate theme of emerging issues.

    Impact on physical wellbeing.

    Under this theme, participants reported a number of issues as a result of living with HIV-infection. Poor state of health, lack of body energy, fatigue, loss of appetite, weight loss and comorbidity were the emerging sub-themes. A state of poor health was the most reported negative outcome with 18 (47%) of the 38 participants mentioning issues related to poor health.

    “You get colds, at times you experience coldness, joint weakness…there is diarrhoea, cough. Your health becomes poor”

    (Married, female participant, 35 years old)

    With HIV-infection, the body becomes weak, with difficulty in engaging in strenuous activities. This can explain why five (5) out of the 38 participants (13%) reported that they were easily fatigued especially when engaged in work or in an activity:

    “I see work as a challenge, there is no work I feel I can comfortably do because I get tired easily”

    (Single, female participant, 39 years old)

    The participants perceived that HIV-infection has led to poor appetite, lack of energy and weight loss. Of the 38 respondents, 5 reported lack of body energy, 5 mentioned poor appetite while 4 talked of weight loss, resulting from living with HIV infection. A lack of physical energy, poor appetite and weight loss seem intertwined and to be occurring concomitantly:

    “When you lose weight, you also lack body energy, you might also end up not eating”

    (Separated, female participant, 37 years old)

    Despite the aforementioned impact of HIV-infection on physical wellbeing, some of the participants pointed out that antiretroviral medication has led to great improvements in overcoming or reducing the negative impact of HIV infection:

    “Medication is very important. So long as one follows instructions they will see the change because the initial state of frequent colds will be no more”

    (Married, male participant, 52 years old)

    Impact on functional wellbeing.

    In the functional well-being, living with HIV infection seems to have a notable negative impact on mainly the work or Activities of Daily Living (ADLs) of the infected individuals. Twenty-seven (27) out of the 38 participants (71%) reported that living with the infection interfered with their normal performance at work or other ADLs in one way or another. Reduced work-rate was reported as an outcome of being infected with HIV:

    “You cannot do a lot of farm related work because of pain in various body parts. You fail to be as productive as before and more often you cannot strain in work”

    (Married, female participant, 38 years old)

    “Living with HIV affects the lives of infected individuals because having the infection means one’s activities would not go as planned, for instance one cannot be as productive at work as they were initially…sometimes, one is so sick and unable to continue with work”

    (Married, female participant, 27 years old)

    “Work overwhelms me; I am unable to do it as I initially used to”

    (Single, female participant, 34 years old)

    All individuals, whether they were formally employed, did casual labor or engaged in ADLs at home or the farm, seemed to be affected. For those who were formally employed, they had to seek permission from their bosses so as to attend their clinic appointment or go to the clinic to pick medication which may involve disclosure, and if granted, the time to go for medical appointment was often limited. Others were forced to be absent from work so as to honor their scheduled medical appointments or quit their jobs in cases where the condition deteriorated.

    “If one is employed, like I am, when I need to go for my scheduled appointment, it becomes a challenge. It forces one to disclose to the boss…sometimes one’s condition can deteriorate to a point they can no longer continue working”

    (Married, female participant, 27 years old)

    “You may not have time to go to work when the time to go for medication is due. You cannot fail to go collect the medication, you would rather absent yourself from work”

    (Separated, male participant, 50 years old)

    Impact on emotional wellbeing.

    Participants reported experiencing emotional distress as a result of living with HIV infection. ‘Thinking a lot’ (a metaphor closely associated with depression in the cultural context of the study), fear of spreading the infection, stress and stigma were the sub-themes that emerged. Of the 38 participants, 10 (26%) reported to be ‘thinking a lot’ ever since they received a diagnosis of HIV infection. The thoughts of living with a disease with no cure, taking lifelong medication and the uncertainty of the future state of health were some of the reasons for the reported emotional disturbance:

    “…when one becomes infected with HIV, the problem is that one will think a lot most of the time because you are taking lifelong medication”

    (Separated, male participant, 42 years old)

    “Thoughts are inevitable because the outcomes of this disease condition in the future are unknown”

    (Single, female participant, 34 years old)

    Participants also reported feeling stressed.

    “If compounded with poverty, HIV can be very stressing; there is fear of unknown upon diagnosis…stress of being known to be suffering from HIV”

    (Married, male participant, 32 years old)

    HIV related stigma was also described by some participants.

    “Being afraid, stigma it is…’”

    (Married, male participant, 66 years old)

    Impact on social wellbeing.

    From the participants’ responses, six sub-themes clearly emerged in social interactions. Participants talked about isolation, discrimination, challenges of disclosure, poor social relationships, separation and divorce and problems in sexual relations.

    Twenty (53%) of the 38 respondents reported fear of isolation by a family member, a friend or other members of the community because of living with HIV-infection. This is one of the factors that contributed to reluctance from infected individuals to disclose their status to most people according to some participants:

    “It is usually disturbing because when one knows you are HIV-infected, he or she will isolate you, they will be uncomfortable with you…even your own family will isolate you. Neighbors too, it is only a few who will not, but majority will”

    (Married, female participant, 32 years old)

    A few of the participants (9 out of the 38) talked of discrimination. Some feared to be discriminated against and as a result they would rather not disclose their status based on past experiences. In their opinion, the participants explained that discrimination can be at home, at work or in business:

    “They are discriminated, varies with the family. Like in my family, they will discriminate me that is why I have not disclosed to my mother or father…because my sister had this condition and was discriminated to an extent that she no longer goes home, she stays in Nairobi”

    (Married, female participant, 32 years old)

    “When you are selling things like buns or vegetables, others will discriminate your goods”

    (Married, female participant, 38 years old)

    Seventeen (45%) of the respondents reported difficulties of disclosing their HIV status to family members, friends, relatives or other people. Some of the highlighted reasons for non-disclosure included fear of stressing or depressing family members, fear of being isolated or discriminated upon, others might publicize one’s condition after they are told or there may be poor social relations afterwards:

    “As for my neighbors, there may be only one who knows my condition, because you know there are others you will tell and then they tell everyone else, and that is not good”

    (Widowed, female participant, 30 years old)

    “It can cause problems, you fear telling them, like my mother [I fear letting her know] she might die of [high blood] pressure…”

    (Single, female participant, 39 years old)

    The relationship and interaction with family, friends, neighbors and others was poor or unstable as a result of living with HIV-infection as explained by 20 (53%) respondents. Some participants explained how certain names are used to describe them, how unfriendly others have become, the hatred shown to them, incidences of abusive comments and being despised. These poor social relations explain why PLWHIV become isolated or discriminated and why they sometimes find it hard to disclose their status:

    “There are a lot of terms they use [to describe one who is HIV- infected], they say ‘you have been bitten by a goat’, ‘you are living a bonus life’…”

    (Married, female participant, 47 years old)

    “In my opinion, it depends on who will know about the condition. Others will hate you, others will not associate with you because they fear you might infect them. So it is better not to disclose in my opinion, maybe you only tell those you trust will not back bite you”

    (Married, female participant 32 years old)

    Living with HIV-infection has also destabilized families. It has resulted into separation or divorce. Blame games (of promiscuity) occur, there is uncertainty and distrust which destabilizes the family and leads to separation or divorce sooner or later:

    “Affects relationships as it brings doubts and uncertainty; there can be blame games or even separation among spouses”

    (Married, male participant, 32 years old)

    There appears to be a problem with the way spouses or couples relate intimately as a result of living with HIV infection. Some of the participants who opened up about their sexual relations in the interview session mentioned challenges of sexual relations with their partners:

    “In the family, there is a challenge between husband and wife because for them to be safe in an intimate relation, one of them is reluctant to use protection, you will get the wife is willing to use protection but the husband is unwilling”

    (Married, female participant, 27 years old)

    Emerging issues.

    Under this theme, participants described the challenges of getting food to meet the nutritional requirement of living with the HIV-infection, lack of job opportunities and the impact that HIV-infection has on societal development. Of the 38 participants, 3 (8%) felt that obtaining food is a problem and yet it is nutritionally recommended that they eat at least five times a day:

    “The main impact for those living with HIV is food. This food, most are not in a position to get that which they are supposed to take. It is recommended that one eats at least five times a day but one can even fail to have a single meal and is forced to wait until evening”

    (Separated, male participant, 50 years old)

    “The general problem is that one takes medication and does not eat. I see that a problem”

    (Widowed, female participant, 45 years old)

    While HIV medication is acknowledged to enable participants be in a position to work, 2 of the 38 participants (5%) describe lack of jobs as a challenge. This has also contributed to the challenge of meeting the nutritional demands of living with HIV-infection:

    “For sure, [HIV] medication gives us energy and we can even be able to work, but you find that there are no jobs”

    (Widowed, female participant, 45 years old)

    “There is a problem when it comes to jobs, sometimes when you don’t have a job, you lack food”

    (Widowed, female participant, 52 years old)

    Two out of the 38 participants described how the developmental progress of a society is affected when many people are infected or fall ill and as a result are unable to work:

    “Everywhere, if in a society there are many ill people [HIV-infected], it shows that development will not be there because they will not be able to work and also the children being born might also be infected if necessary precautions are not taken. Therefore, such a society will derail in terms of development. Development is slowed down”

    (Married, female participant, 27 years old)

    In summary, items in four of the five subscales of the adapted FAHI questionnaire covered most of the issues perceived by the participants to be the impact of living with HIV infection. Participants did not report any issues under the three items of the cognitive functioning subscale of the questionnaire. The fact that issues raised by participants are covered by most of the items in the adapted FAHI questionnaire supports its content validity as a measure of HRQoL in this setting. Based on the experiences of the cognitive interviews, we modified the 5 point Likert scale into a 3 point Likert scale.