Focus group discussions.

Four (4) FGDs were conducted with EPLHIV to explore their perceptions on QoL. The FGDs consisted of two male and two female’ groups with each group comprising 7–8 individuals (N = 29). The sex disaggregation became necessary following feedback from the pretest on the need to separate males from females to enable interactive discussions The participants were arranged in a horseshoe position, with the moderator and note-taker sitting in the centre. All the FGDs were conducted in the local language, with each meeting lasting between 45 and 60 minutes. During the discussions, participants were allowed to express their views on any posed question before moving to the next one. Probing techniques were employed to clarify any ambiguous points or explore emerging areas of interest. The FGDs were conducted at the two ART sites (health facilities). Each discussion had at most eight (8) participants, a moderator and note taker.

All participants were allowed or given the opportunity to answer a question asked before proceeding to the next question. At the end of the FDGs the moderator summarised all key issues which merged for participants to validate as a form of member checking.

Key informant interviews.

Key informant interviews were carried out with personnel from the NACP, leadership of PLHIV, implementers of HIV programmes and service providers at the national and sub national level.This was to explore their perceptions on the quality of life of EPLHIV. These participants were selected due to their perceived knowledge of HIV programming and interventions in Ghana. In all, eight (8) KIIs were conducted.

The interviews were conducted one-on-one with the key stakeholders:

Both the KII and FGD interview guide covered the four (4) domains (Physical, Psychological, Social and Environmental health) of the WHO’s quality of life (WHOQoL) Bref assessment tool. All interview sessions were moderated by trained graduate research assistants with expertise in qualitative research.

Physical health.

Most EPLHIV expressed that they have challenges with their physical health, while few had no challenges. Key Informants indicated that EPLHIV are faced with several physical challenges, such as pains and lack of physical strength.

Both the EPLHIV and Key informants mentioned that EPLHIV feel pains within their body, waist, leg, and knee, which sometimes makes it difficult for them to move and sleep. Due to this, some EPLHIV have resulted in herbal and orthodox medicine to relieve them from their distress.

“Some of them have issues; these are bone, joint, and bone aches. They will come and complain about it. A percentage of them need aid in that area, but a greater majority of them have one complaint or the other, yes” (R1, KII, Male).

Some EPLHIV indicated that they lack the strength to perform their daily activities. A Key Informant mentioned that most of the EPLHIV do not have the strength to perform their daily activities compared with those who do not have HIV.

“…For the majority of them…their physical health is not good as compared to their age mates who do not have HIV because the others are also facing the non-communicable diseases that we’ve talked about, that is, hypertension, diabetes and all that, PLHIV are also facing the NCDs, and on top of that, the medicines they are taking for HIV also has some challenges for them” (R2, KII, Male).

On the other hand, a few participants expressed that they do not have physical challenges. A participant indicated that he used to have physical challenges, but after receiving treatment, he is relieved from the pain and can now sleep.

“When I was first diagnosed with HIV, because of how I was thinking and other staff, it made me reduce weight, I could not eat well, and when it was late too, I would not sleep until daybreak before I could have a little sleep but as to when I started the treatment, all the thinking and sleepless night have stopped, and I can now eat” (R2, FGD, Male, Facility 1).

Psychological health.

The study further revealed that almost all EPLHIV experience issues relating to their psychological health, while a few had no challenges. Among the psychological challenges include thinking a lot about the HIV condition, getting worried and scared as PLHIV. These psychological issues, in some cases, contribute to an increase in their blood pressure levels.

Some EPLHIV indicated that they started thinking about their HIV condition when they began taking antiretroviral drugs. This continued until they realized that the thinking would not help, so they had to stop. For instance, one EPLHIV indicated that she stopped thinking when she started taking the antiretroviral drugs. In addition, the fear of being seen at the hospital for antiretroviral drugs makes some people think a lot.

“Firstly, when I contracted the virus, it became a burden to me. I used to think if I was about to die or not, but as the medicine came, I do not think about the sickness anymore as I used to” (R2, FGD, Female, Facility 1).

There were instances where some participants expressed that they get worried about their conditions a lot to the extent that they ask themselves questions about how they contracted the disease. As a way of overcoming this, an EPLHIV mentioned that it was the health workers who advised her to stop worrying about her condition since people were not aware of her illness.

“When you are told you have something inside you that cannot be removed from you... People get anxious, they are worried, and some of them are very depressed, especially if they don’t have the right support. So, their psychological status is not the same as that of somebody who does not have the disease. So, a lot of them are worried” (R2, KII, Male).”

Some participants were scared of their condition due to the consequences.

“At first when I realized I had this sickness, what I knew previously is that when you contract this sickness, it means you are about to die. After two years you will die and a whole lot. This scared me when I saw it on TV” (R6, FGD, Female, Facility 1).

On the other hand, a participant indicated that she does not experience psychological problems because of his secretiveness and adopting a strategy of not thinking about it.

“It is a problem, because when you have this problem it distances you from your friends, family members too, so you must be very secretive, and you should not be thinking about it because it might lead to other health issues and always feel free to interact with people” (R1, FGD, Female, Facility 1).

Social health.

The findings revealed that many EPLHIVs are unable to disclose their status. Few indicated that they had fully disclosed their status, while others had partially disclosed their status primarily to their immediate family, thus, their partners and children. Most participants have not disclosed their status to others due to the fear of stigma and loneliness.

“…But there is one thing about this condition, if you have a friend and you tell him or her, that fellow will not come close to you again, because of that I don’t discuss my health issues with anyone, so I move free with them as we were from the beginning because once they get to know your problem, they start to withdraw themselves from you as if you are no more a human being” (R2, FGD, Male, Facility 1).

Some EPLHIV expressed that they had partially disclosed their status to some of their family members. Some EPLHIV said that they have a good social relationship with some of their immediate family members who are aware of their status, and some of them even support them in visiting the health facility for treatment and taking medications. A Key Informant indicated that HIV patients who can disclose their status to their family members get more support from them than those who fail to disclose.

“For my situation, only my wife knows about it, and I am okay with it, and even sometimes I come here with her anytime I come here” (R1, FGD, Male, Facility 2).

“Okay, so, generally, HIV has its associated stigma. So, most people are unable to disclose their status to their partners. For those who can do that and their partners accept it, their social condition is much better than those who did not disclose it to their partners. The condition now serves as a reason for some partners to divorce or separate from them” (R3, KII, Male).

Few EPLHV had fully disclosed their status to their family members and other people. Consequently, some of them have been neglected, while others are stigmatised. A participant indicated that her family members have distanced themselves from her, and she does things mostly on her own, but their attitude does not bother her. A key informant indicated that EPLHIV should be mentally prepared to face the consequences of disclosing their status because it comes with consequences such as loneliness and stigma.

“So, a lot of them don’t get the support they need from their family members, friends, and so on because of the stigma associated with the disease. People think that even by coming into contact with them, just sitting, drinking with them, you can get the disease. So, most people do not relate to them well, and in that way, some of them are isolating themselves from the public, and those who don’t have the courage tend even to stigmatize them” (R2, KII, Male).

Participants who had no challenges with their social health indicated that through the help of the teachings from the health professionals, they have been able to overcome their social challenges and even assist their new colleagues in helping them overcome their challenges.

“At first, I used to have a problem, but the teaching here and that of what I have also been doing here and the learning and training I have been going through has strengthened me and given me the opportunity to teach the other people that they are now coming here, and motivates them” (R4, FGD, Female, Facility 1)

Physical environment.

Concerning the physical environment of EPLHIV, accessing health facilities, training of health workers on stigma, good health care at the health facility, cost of receiving care, unavailability of focus care for the elderly and long hours spent at health facilities getting treatment and care were also identified as some of the themes.

Regarding accessing health facilities, there were issues related to distance and the cost of transportation to the health facility.

“Some of my colleagues travel long distances to access their ARVs and often face challenges with transportation, leading to difficulties in accessing care. This can have negative consequences on their health. Financial constraints prevent some from renewing their insurance, causing them not to be able to pay for other services” (R8, FGD, Male, Facility 2).

Some EPLHIV also mentioned the need for training on stigma for some healthcare providers due to how they treat EPLHIV. The training is relevant as stigma could prevent people from receiving care at health facilities.

“Even after the stigma training with the staff, some staff are not behaving well. If this is happening, we should reorganize the stigma training because we might have received new staff who have not received such training. So that if anyone is coming here, the person does not panic or fear coming here because of such issues” (R4, FGD, Male, Facility 2).

A key informant indicated that the physical environment of EPLHIV is enabling EPLHIV to receive good care due to their access to information that is usually provided through counselling sessions that are offered to them at health facilities. Others indicated that the health workers talk to them politely and take very good care of them. This is expressed in a participant’s quote below:

“With me, I panicked from the beginning when I came here, but with the staff here, the way they pamper us, especially with the madam that takes the blood samples and checks our status, the way she talked to me before she even told me the result, it made me feel some kind of relieve within me together with the doctors and the other staff that works here, they talk with me very well, so since then I also felt like am a human being too and since then I walk free and whenever I want to come here I feel like am coming to my siblings, so to me am okay” (R1, FGD, Male, Facility 2).

In addition, many participants expressed that the cost involved in receiving HIV care as EPLHIV is one of their major challenges. These are expressed in the statements below:

“As for the counselling in the morning, they give us a talk on everything, so I have no problem there. But my problem is the sertraline we buy. Sometimes, when you come, what to use in buying the medicine is difficult; how will you be able to buy the sertraline” (R4, FGD, Female, Facility 1).

The unavailability of focused care for elderly people or EPLHIV was also realized in the study. Participants mentioned that there are no specific arrangements for elderly people receiving care in health facilities. Hence, they spend long hours visiting these health facilities, which also affects their health, such as EPLHIV. They are subjected to long stares from people as they wait to receive treatment and care, which makes them feel uncomfortable. For instance, some participants mentioned that:

“Waking up early to come to this place and staying long here is my challenge. Because if an elderly person like me comes and sits here with the younger ones, we start bickering. If they can give priority to the elderly persons, it will be good, then someone from 50 years and above when she comes won’t have to join the queue or wake up at dawn, that kind of priority would be good” (R1, FGD, Female, Facility 2).

Some key informants indicated that the facilities that are available for EPLHIV are not adequate; hence, they are usually not provided with holistic care or treatment. Also, facilities that provide advanced treatment are typically located in the cities; hence, EPLHIV, who live in remote areas, are unable to have access to good treatment and care.

“The facilities available to take care of them holistically are not adequate. In the care of somebody living with HIV, you need several dimensions and several domains to provide holistic treatment for them. Most of the hospitals for HIV patients are in the regional, district, and national capitals. So, some infected people living in remote areas don’t have access to those facilities. Okay, so the physical environment is not built to support them” (R2, KII, Female).