‘I am struggling to survive’ – limited living conditions increase the burden of HIV: A qualitative study

ABSTRACT

The human immunodeficiency virus (HIV) continues to have life-limiting health consequences for many individuals and remains a significant threat to global public health. This qualitative study explores the experiences of people living with HIV in Sidama, Ethiopia. Interviews with 19 adults recruited from an HIV outpatient clinic were conducted using a semi-structured interview guide. The analysis method used was systematic text condensation. The results reveal that an HIV diagnosis triggered strong emotions. Economic concerns, stigma, and discrimination also increased the burden of a diagnosis, which could lead to a loss of income or housing. Consequently, informants’ ability to maintain a regular life and receive social and psychological support was reduced. Religious faith provided strength to informants, though they stated that some religious leaders do not support antiretroviral therapy. Understanding the everyday challenges of people living with HIV is crucial for health professionals and health programme developers working to promote health and enable people to follow their recommended course of treatment. Person-centred care is recommended. In particular, the poorest should receive attention. It is also crucial to reduce stigma and discriminatory attitudes towards people living with HIV and to motivate faith leaders to prevent HIV stigma and support antiretroviral therapy.

KEYWORDS:

• HIV and living conditions
• HIV and social and psychological health
• religious followers
• person-centred care

Introduction

The human immunodeficiency virus (HIV) continues to have life-limiting health consequences for numerous individuals. Furthermore, HIV remains a significant threat to global public health (Abuto et al., 2021; Workie et al., 2021). An estimated 40 million people or more are living with HIV (PLHIV) worldwide (WHO, 2022a). In Ethiopia, the estimated number of PLHIV is 609,349, of whom 228,854 are male and 380,495 females (The Ethiopian Public Health Institute 2022).

Advances in antiretroviral therapy (ART) have increased the survival rate of PLHIV, and the number of individuals living with HIV-related complications is growing. These include opportunistic infections, side effects of ART, neurological complications, mental health challenges, and decreased well-being. Such complications may often be due to difficulties in following medical and non-medical treatments as well as shortcomings in care provision (Eshun-Wilson et al., 2019; Mojola et al., 2022; WHO, 2021). A healthy lifestyle, combined with long-term, uninterrupted ART, is key to effective treatment; comprehensive HIV care should include measures that promote health and prevent comorbidity (WHO, 2021).

Today, an HIV infection is a manageable chronic health condition, and treatment should enable PLHIV to lead long and healthy lives (FHAPCO, 2021). The HIV/AIDS National Strategic Plan for Ethiopia 2021–2025 (FHAPCO, 2021) aims to achieve maximum public health benefits, attain HIV epidemic control, and reduce mortality from acquired immunodeficiency syndrome (AIDS). Among other things, the plan demonstrates a shift from an intervention-based focus to a person-centred response. In a person-centred approach, aspects of an individual’s economic, social, emotional, and physiological circumstances can improve health and reduce morbidity and mortality.

According to WHO (2021), however, PLHIV may find recommendations for a healthy life hard to achieve in uncertain circumstances. PLHIV are often vulnerable to poverty, stigma, discrimination, and mental health problems, making it difficult for them to adhere to a course of treatment. It is therefore essential to organise services around people’s needs rather than their disease by promoting integrated, person-centred approaches to care (Chinyandura et al., 2022).

Understanding the influence of HIV on individuals and their families, including daily life challenges, is crucial to this person-centred approach (Fauk et al., 2022a; WHO, 2022a). To do so, it is vital to examine the experiences of PLHIV. Identifying the main burdens of HIV can inform HIV policy and enable healthcare professionals to advocate for evidence-based interventions within a healthcare system that is adapted to meet individual needs (FHAPCO, 2021; Gebremichael et al., 2021; Moges et al., 2020). To help meet this research gap, this study investigates the experiences of adults living with an HIV diagnosis in Sidama, Ethiopia.

Background

Ethiopia has a population of more than 120 million (World Bank, 2022), with approximately 80 ethnic groups and languages. About 79% of the population reside in rural areas, most making a living from agriculture (FHAPCO, 2021). Between 1990 and 2018, life expectancy at birth increased by 19 years to 65. Ethiopia has long historical and cultural connections to both Christianity and Islam; at the time of the 2007 census, 43.5% of the population identified as Ethiopian Orthodox Christian, 33.9% as Muslim, 18.5% as Protestant Christian, and 4% as some other religions.

The HIV epidemic in Ethiopia is characterised as mixed, with wide regional variations and concentrations in urban areas. Many PLHIV in Ethiopia do not experience well-being; a poor health-related quality of life is thought to be prevalent in tertiary settings (Zeleke Negera & Ayele Mega, 2019). Furthermore, PLHIV struggle with problems that can affect their physical, mental, and social health, including diagnosis rejection, stigma, depression, substance abuse, and challenges related to poverty and low socioeconomic status (Dugasa, 2022; Koster et al., 2022; Mengistu et al., 2022). Strengthening psychological support through social networking is recommended for managing mental and social health problems.

About 40–87% of PLHIV in Ethiopia struggle to access safe, sufficient, and nutritious food for themselves and their households (Tadesse & Toma, 2023). Malnutrition rates among PLHIV is as high as 42.5% (Kalil et al., 2020). There are considerable variations between regions; for example, in the Benishangul Gumuz Regional State, the incidence of food insecurity and malnutrition among PLHIV is up to 76% (Nigusso & Mavhandu-Mudzusi, 2021).

Not all PLHIV follow recommended ART consistently. Due to their compromised immunological status, they are vulnerable to repeated opportunistic infections that may affect their ability to work regularly, leading to financial problems and reducing their overall quality of life (Diress et al., 2020; Mohammed et al., 2021). According to Moges et al. (2020), retention in care among PLHIV is low in Ethiopia. Fear of stigma, care dissatisfaction, economic constraint and use of holy water or fasting discourage retention in care, whereas social support and restored health motivate retention in care.

The pervasiveness of discriminatory attitudes towards PLHIV varies from region to region (FHAPCO, 2021). Ethiopia has enacted laws and regulations to prevent HIV-related stigma in various spheres of society, including employment, education, healthcare, and housing. Law and policy prohibit mandatory employment-related HIV testing and HIV-related employment discrimination. However, stigma and discrimination have been reported across communities: 48% of women and 35% of men polled in Ethiopia believe that children living with HIV should not be able to attend school with children who are HIV-negative, and 55% of women and 47% of men say they would not buy fresh vegetables from a shopkeeper living with HIV (FHAPCO, 2021).

Method

Aim

This study aims to investigate adults’ experiences of living with an HIV diagnosis in Sidama, Ethiopia.

Study design

The study has a qualitative, descriptive approach. Based on their knowledge and experience, and after reflecting on their preconceptions, the authors together developed a semi-structured interview guide, written in English and Amharic. The participants’ experiences were explored through open-ended queries and follow-up questions. The semi-structured nature of the interview guide ensured that the themes agreed on were explored. Individual, semi-structured interviews were chosen to understand personal experiences of living with HIV (Malterud, 2001, 2017, 2022). Qualitative interviews can help researchers to determine the essence of participants’ desires and wishes and to raise questions through broad and open-ended enquiry.

The interview guide included the following themes: (a) demographics including how the participants confirmed their diagnosis; (b) how the participants explained their diagnosis and health problems to their families and friends; (c) experiences related to receiving the diagnosis; (d) challenges that the diagnosis brought about in their everyday lives; and (e) hopes, concerns, and fears related to the future.

Study area

Data were collected from the Sidama Region in southern Ethiopia, officially formed as a regional state in 2020 from the Southern Nations, Nationalities, and Peoples’ Region. Hawassa University Comprehensive Specialised Hospital is a regional hospital in Hawassa, Sidama. The hospital’s HIV outpatient clinic receives patients from the region, offering HIV testing, counselling, and treatment for PLHIV. At the time of the study, 2771 patients had been followed up at the hospital. At the HIV outpatient clinic, ART is free, but the patient is primarily responsible for paying for laboratory services and additional treatments, including treatment for opportunistic infections, except for tuberculosis which is free. Understanding the burden of HIV for people seeking treatment at the outpatient clinic is essential for providing adapted information and HIV care to PLHIV.

Study population

In two randomly selected weeks in the autumn of 2019, patients at the HIV outpatient clinic at Hawassa University Comprehensive Specialised Hospital who met the inclusion criteria were asked to participate. These criteria included willingness to provide informed consent if older than 18, an ability to communicate orally with investigators, and an HIV diagnosis. The exclusion criteria included adults determined by the investigator to be unable to provide informed consent.

Data collection

The second author informed patients at the HIV outpatient clinic about the study and the data collection method and offered an information letter with a consent form. Participants were asked whether they understood the information provided and if they would voluntarily participate in the study. Because the patients’ reading levels were unknown, participants were provided with both oral and written information about the study (in Ethiopia, up to half og people cannot read or write) (FN-Sambandet, 2021).

The first and last authors conducted the interviews. Before and during the interview process, the authors considered how best to communicate using an interpreter and use follow-up questions. The interviewer repeated information about the study to each participant, explaining that participation was voluntary and that they could withdraw without prejudice at any time.

Sidaamu Afoo is the main language of the Sidama Region. However, the people of Sidama speaks various languages, and some do not speak the official national languages of Amharic or Sidaamu Afoo. Interpreters who spoke the participants’ preferred language were used to reduce language barriers. The second author, who speaks both Amharic and Sidaamu Afoo, ensured that both the information given to the participants and the interpreters’ translations were of a high quality.

A total of 19 people were interviewed. Eighteen interviews were electronically recorded and transcribed verbatim. One of the participants requested that the interviewer took written notes. The audio records were transcribed verbatim. The second author, who speaks Amharic and understands other native languages, verified the translation and transcripts by listening to all the audio records before the authors analysed the transcripts of the audio files.

Analysis

Systematic text condensation is a strategy for qualitative analysis based on Giorgi’s psychological phenomenological analysis (Malterud, 2017, 2022). The procedure consists of the following four steps: (1) moving from an overall impression to themes, (2) identifying and sorting units of meaning (coding), (3) moving from codes to meaning, and (4) synthesising and describing the results.

The transcripts were read several times in the first step, and an overall impression emerged. The second step extracted preliminary themes that illuminated the study aim. The themes identified include: (a) the burden and stress caused by HIV diagnosis, (b) financial challenges, (c) concerns related to housing and following lifestyle advice, (d) social and psychological stress, (e) faith and trust in God, (f) the importance of family to survival and health, (g) lack of support from family and friends, and (h) worries about the future. The coding included identifying and sorting these themes into meaningful units, which involved decontextualisation and temporary removal of parts of the text. During this process, nuances and variations in the data were considered. The third step involved applying a systematic abstraction of meaning. We reduced the data to a decontextualised selection of meaning, sorted across individual informants. In the fourth step, these meaningful units were synthesised and described according to the following three main themes: (1) financial challenges affect daily life; (2) social and psychological support strengthens mental health; and (3) mastery of one’s situation, hope, and faith in God. This last step included a summary of retellings, adhering to the informants’ voices (Malterud, 2012, 2017, 2022).

The authors analysed the data separately before discussing themes and results using a combination of oral discussion and written email correspondence, until they reached an agreement about the results.

Ethical considerations

This study was performed according to the guidelines of the Declaration of Helsinki. Ethical approval was granted by the Hawassa University College of Medicine and Health Sciences Institutional Review Board (protocol number 205/19, Ref.nr. number IRB/244/11) and the Norwegian Centre for Research Data (Ref.nr. 556848). The Regional Committee for Medical and Health Research Ethics in Norway was informed. The informants provided written informed consent to participate in the study. Confidentiality of the data was safeguarded, and the interview transcripts and other data did not contain any names.

Results

A total of 19 adults living in Sidama were interviewed. Some lived in Hawassa, while others lived in rural areas. The informants were 20–70 years old; 13 were women, and six were men. Nine were married, three were divorced, five were widows/widowers, and the status of two informants is unknown. Seven informants were Orthodox, eight were Protestant, two were Muslims, and two were unknown. One informant was homeless at the time of the interview; others lived with a partner and children or in mixed families with parents, children, and extended family members. All informants had been diagnosed with HIV for more than two years prior to the interview, followed ART, and were monitored at the HIV outpatient clinic.

Financial challenges affect daily life

Stress related to financial concerns was widespread. The HIV diagnosis increased health-related expenses and reduced working capacity, as described by one informant:

Like any Ethiopian, I face economic challenges. I am struggling to survive. It is because of both the challenge of the cost of living, just like other Ethiopians, and because of the diagnosis. The diagnosis doubles the burden because I cannot do any activity at full capacity just as the healthy do, and the diagnosis increases the expenses on top of the daily cost of living.

After their HIV diagnosis, some became financially dependent on their family and said they could not survive without them. Changes in income had different causes. After the diagnosis, some informants were asked to end their employment or lost their marriage, rental home, or customers, as indicated in the following quote:

Yes, HIV/AIDS totally ruined my goal. Because of that, I lost my money, my marriage, and my goal of being a respectable merchant.

Daily financial worries were common, and a central concern was housing. Informants struggled to rent or buy a house and often lived with relatives – siblings, parents, or adult children, some in overcrowded homes, leading to stress, as one informant stated:

I feel very stressed, and I think my stress will be relieved if the government rents or buys a home for me. I need a private home.

Being dependent on family made some feel like a burden and worry about how long their family could support them. Those who were the only ones in their family with an income were worried that they would become too ill to work or would die, and they were concerned about the consequences for their family. Informants with children felt guilty that the diagnosis prevented them from providing their children the same opportunities as other children, such as housing and education.

Due to the financial challenges and ability to make decisions regarding housing and working conditions, health advice from health professionals could create stress, as illustrated in the following quote:

A person with HIV must eat relatively good food and have good hygiene, and this is difficult for me, especially given my living conditions nowadays, and I feel sad.

The participants were informed about healthy nutrition and the importance of regular meals. However, not all had the opportunity to follow this advice, either because it was too expensive or because the food was unavailable on the market. One informant said:

It is difficult for me to use food according to the adviser. I face difficulty from a financial point of view; I will try to practice it, but it is difficult. I need money to get those foods they recommend.

Although ART was free, they had to pay for additional treatment, such as antibiotics, laboratory services, and travel costs. More public support for housing, covering daily expenses, and additional treatments was advocated, and concerns were raised about the health gap and the benefits for those with money.

Not everyone experienced challenges, however. One informant, financially and psychologically supported by a son, as well as an employer who arranged better work conditions for him, stated he accepted all the advice from his children, bosses, and colleagues. On the other hand, even informants who could manage challenges at the time of the interview were worried about the future, as one stated:

Yes, I have fears. The HIV prevalence is increasing, which could go beyond the capacity of the government. One day, I fear they could say: Serve yourself in treatment.

Social and psychological support strengthens mental health

Being diagnosed with HIV had a significant emotional impact. Some informants refused to accept the diagnosis or thought they would die soon and described feeling hopelessness, shock, worry, despair, and fear. Furthermore, several lived with grief or guilt after infecting their children, divorcing due to the diagnosis, losing work, having family or friends who died of HIV, or being excluded from family or social groups after the diagnosis. Several felt isolated and alone and pointed out that psychological support and social inclusion were critical for mental and social health, as indicated in the following quotes:

Only I need love from them [my family]! My father and my mother did not give me love after the diagnosis; they ignored and discarded me, even my children, because my parents believed that their father brought HIV to their daughter.

Even though I can manage any activity, they demoralised me by saying, “you cannot handle it”. Mostly, they do not show up and say that directly; but they do it indirectly.

Exclusion from family or social activities negatively affected the mental health of informants because, according to them, family support and participation in productive and enjoyable activities could promote a feeling of well-being. As one informant stated:

Finding ways of interacting with other people in ways that you are comfortable with is important for good emotional well-being. But I am struggling. I have no-one to talk to regarding my situation.

Informants highly valued support from family members, and some preferred to talk to them if they needed emotional support. By contrast, others chose to speak to health professionals instead of family, while some had no-one else to talk with them. Health professionals at the outpatient clinic were perceived as supportive and available.

Mastery of one’s situation, hope, and faith in God

The diagnosis weakened motivation and hope for the future. After starting treatment, the physical symptoms subsided, and this, along with information about the disease and ART, led to less fear and more hope, as expressed in the following quote:

I realised I could survive, after I received the treatment. I understood that I can do anything and expect to live much longer years. Now I want to continue my education. I want to improve my life and live longer.

The informants used various coping strategies as motivation to live life with an HIV diagnosis. They said they could not give up because being alive was crucial for their children, family, and friends – they could not fail them. Some said they were raised not to give up, as the following quote illustrates:

I said that facing a problem is a lesson. You can take this experience and share it with the rest of your friends, and this whole issue will teach you how to continue your life.

The hopes of informants varied: some hoped to stay healthy enough to work or study, whereas others wanted better living conditions for themselves and their families, or to become better people. Those with children hoped to live long enough to support them, provide them with food and shelter, and ensure they had a proper education until they became self-sufficient and could have a good life. Moreover, they repeatedly mentioned hope for better treatment. Parents hoped for a vaccine or cure to make them and their children HIV-free.

Religious faith was an essential source of comfort and support for many informants, and prayer and services helped them to reduce stress and remain strong. Some informants were part of a religious community that they perceived as supportive. In contrast, others said that the only support they received from the church was sometimes being prayed for, while some said they received no support at all. Some informants asked God for help; they believed in God’s will and regularly attended a place of worship to listen to the priest or to pray.

When I pray, I am relieved of HIV-related tensions. I trust that one day God’s healthy blood will enter my unhealthy blood and set me free from HIV. While using the treatment, I ask God to give me mercy and get rid of HIV from my body.

A few informants mentioned members of their congregation who had followed the advice not to accept modern medical treatment, and who were now dead. They distanced themselves from this advice. One informant said the following:

I want to take religious advice. At the same time, I want to continue with modern medicine. It is good for me. Some religious doctrines recommend dropping their medication because they have been declared cured after being asked. Some of them will come with bouts of infection after stopping the medication. It complicates things, but people do not understand the problem.

Discussion

In line with previous research, the results reveal that an HIV diagnosis triggered strong emotions, caused stress, and increased concerns in people’s daily lives (Eshun-Wilson et al., 2019; Mengistu et al., 2022; Moges et al., 2020; Parcesepe et al., 2018). These results are discussed under the following themes: (1) financial challenges affect daily life and create stress; and (2) social and psychological support and religious faith promote health.

Financial challenges affect daily life and create stress

The results revealed a daily life characterised by worry. Concerns often related to societal conditions and financial resources, over which many individuals found they had little influence. Previous research reveals that the economic burden of HIV is challenging for PLHIV, and that health policy intervention is urgently needed to reduce the cost of HIV, particularly for people on low incomes (Assebe et al., 2020; Gesesew et al., 2020). Our results were in line with this research. More public support is recommended; if not, many PLHIV will continue to struggle to follow up on ART, with expectation of a health-promoting lifestyle or the ability to finance additional treatment costs (e.g. antibiotics, laboratory services, and travel costs).

Stigma and discrimination increase economic concerns in resource-constrained contexts because they can lead to loss of work, close relationships, and work capacity, and even eviction from family homes or rental housing (Stonbraker et al., 2022; Teye-Kau et al., 2018; WHO, 2021, 2022a). Housing is a non-medical factor that can affect health outcomes (WHO, 2022b). According to this study, finding or keeping adequate housing is a common challenge for PLHIV in Sidama. There is an association between PLHIV in inadequate housing and inconsistent use of HIV care, reduced treatment effectiveness, and HIV transmission risk behaviour (Davison et al., 2020; Galárraga et al., 2018). Moreover, housing without satisfactory sanitary conditions or crowding inhibits prevention of infections and co-morbidities, while exacerbating co-infections and mental health problems. Previous research indicates that those with poor living conditions are at risk of reduced physical, social, and emotional well-being (Gómez et al., 2019; Teye-Kau et al., 2018). Our results support an increased development of governmental interventions that prevent homelessness and unsafe housing, with a view to preventing stress and health risks to PLHIV and providing redress for health inequalities (Onapa et al., 2022; Swope & Hernández, 2019).

Successful HIV care requires well-timed counselling to improve food habits and nutritional health (Weldesenbet et al., 2020). However, maintaining a regular, balanced diet in practice is challenging, despite good information being available. In Ethiopia, health professionals are recommended to provide person-centred HIV care, meeting people where they are and addressing their needs (FHAPCO, 2021). Giving nutritional advice without knowing whether the person can pay for or obtain the food recommended creates further worry and a feeling of failure. Meal and diet interventions should therefore be based on a person’s predispositions instead of general guidelines, enabling them to gain mastery of a balanced diet. HIV healthcare personnel should receive training in providing individually adapted information based on each person’s circumstances and offer people in food-insecure circumstances nutritional support as part of their treatment (Tesfay et al., 2022; Weldesenbet et al., 2020).

Our result reveals that nurses in the HIV outpatient clinic have established trusting relationships and are well-positioned to provide context-adapted, meaningful, person-centred care. To further promote person-centred approaches, however, it is recommended that there is an increased emphasis on understanding and respecting patients’ cultural beliefs related to their experiences of illness and the conditions they live under. This understanding should be incorporated into counselling. It is also essential that these perspectives are included in the education of health professionals, in the bachelor programmes and in further educations.

Social and psychological support and religious faith promote health

Previous research concludes that the health-related quality of life for PLHIV is lower than in the general population (Koster et al., 2022; Mengistu et al., 2022; Mohammed et al., 2021). PLHIV are also more likely to have poor mental health compared with people with other chronic conditions (Engelhard et al., 2018). Up to 48% of PLHIV are depressed (Weldesenbet et al., 2020) and recommendations for psychological treatment is suggested. Few studies have examined more complex explanations.

It may be helpful for health professionals to understand that information alone about HIV and the importance of ART is not always sufficient for PLHIV to follow their recommended treatment and stay healthy. The results reveal that an HIV diagnosis can cause significant personal concerns that make compliance with treatment more difficult. Aron Antonovsky (Eriksson, 2007) assessed why some people stay healthy despite a stressful situation, whereas others do not. He developed the salutogenic model of health, based on a sense of coherence. The model is used in a broad array of settings to analyse coping and consists of three components: (1) comprehensibility, (2) manageability, and (3) meaningfulness. Successful coping depends on a sense of coherence incorporating all three.

Comprehensibility refers to the belief that events happen in an understandable and explainable way. By contrast, manageability refers to the belief that one has the abilities, support, and resources to deal with what happens. These components are, according to the results under stress. The informants struggled to accept their diagnosis and felt they could not influence their financial situation or living conditions.

The third component, meaningfulness, refers to the extent to which life makes emotional sense and that any problems that arise can be solved. It is the most significant component and constitutes the driving force for increasing one’s understanding of the world and access to resources (Eriksson, 2007). This component includes social and cultural conditions and connections to family, friends, and religion. The results align with previous research, highlighting family and friends as a source of care, love, and support. Furthermore, the informants found it necessary to remind themselves that they were critical to others financially and as caregivers (Fauk et al., 2022b).

This result indicates that a sense of coherence is a supporting factor for commitment to HIV treatment, while support from friends and family strengthens the ability to cope with situations related to HIV status (Fauk et al., 2022b; Shrestha et al., 2019). However, the lack of wider social support due to the diagnosis often led to disappointment and reduced mental well-being. Stigma and discrimination are significant concerns for PLHIV and can further affect their mental health, due to social isolation and loneliness (Chekole & Tarekegn, 2021; Weldesenbet et al., 2020). These results support recommendations in previous research and suggest an increased focus on preventing stigma and discrimination to improve mental health (Diress et al., 2020; Kassaw et al., 2022).

Belonging to a religious congregation was vital to several informants. They gained strength through prayer, counselling, and participation in religious services. Engaging in public and private religiosity has been reported to promote health and the experience of belonging (Zimmer et al., 2016, 2019). Suggested protective factors gained from religion are psychosocial resources, such as coping, social support, less psychological distress, and an overall better quality of life (Arrey et al., 2016; Mishra et al., 2017). However, this is not well supported in research, and several other aspects of religiosity must be investigated (Endeshaw et al., 2017). Worth noting is that the importance of faith in God is most likely associated with better health in low-income countries (Zimmer et al., 2019).

PLHIV may receive conflicting information and views from religious leaders who, for example, state that they can heal HIV. Against their faith leaders’ advice, the informants in this study continued with ART without changing their affiliation with the congregation. For others, however, competition between ideologies and HIV treatment options can create uncertainty about medical treatment. Faith-based ideologies that offer a cure are particularly appealing to PLHIV. Furthermore, religion can mediate the shame and stigma related to HIV and play a prominent role in shaping people’s perspectives about PLHIV. Faith leaders should therefore be motivated to prevent such stigma in their congregations (Zou et al., 2009), and advise PLHIV to adhere to ART. In addition, health authorities and health professionals should value faith leaders as relevant partners who can spread knowledge about HIV transmission and HIV prevention. In the 15–49 age group in Ethiopia, only 20% of women and 38% of men have comprehensive knowledge of HIV transmission and prevention. We therefore recommend increased focus on improving this knowledge in the population as an immediate measure (FHAPCO, 2021).

Limitations

A qualitative methodology was employed to explore and understand the challenges PLHIV face following an HIV diagnosis. One disadvantage of qualitative interviewing is the possibility of the interviewer influencing the informant. Before data collection, the need to communicate preconceptions were emphasised, both between researchers and between the researchers and the translators. The translators were instructed to translate word for word, not to summarise the informants’ answers.

The use of interpreters is itself a limitation of concern. The interviewer and interpreter communicated in English, a second language for them both. However, one strength was that the interview guide was written in English and Amharic. Furthermore, one of the researchers is a Sidaamu Afoo and Amharic speaker and was available to discuss linguistic challenges. Another linguistic strength of the study was that the second author ensured the high quality of the translation and transcription by listening to the interview’s audio recordings. The interview sessions employed follow-up questions to deepen answers and avoid misconceptions. Using an interpreter could lead to linguistic misunderstandings; however, all translators lived in the same setting, and the informant could speak their native language.

The informants shared the same diagnosis, lived in the same area, and were patients at the same outpatient clinic. According to Malterud, this creates homogeneous data and reduces the required number of informants (Malterud, 2017). The transfer of value to other contexts must be discussed. The informants were not asked about their sexual orientation or whether they were sex workers, and we cannot state whether anyone belonged to a high-risk group, but all stated how they financed their daily living costs without mentioning sex work.

Conclusion

The overarching concerns of informants were linked to monetary factors and exclusion from family, friends, and the community. Health professionals should be trained to provide person-centred care and help PLHIV to develop the knowledge, skills, and confidence to manage their health more effectively and make informed decisions based on their living conditions. Providing governmental support primarily to the poorest people for housing and daily costs, including nutrition and additional treatment, could significantly influence the health and quality of life of individuals and their families.

A lack of knowledge about how HIV is transmitted and the fear of contracting the virus through physical or social contact with PLHIV are two reasons for stigma and discrimination. Health policy and authorities should focus on improving HIV-related knowledge in the population to deal with misconceptions and myths. Reducing discriminatory attitudes towards HIV-infected people is critical, and information and education programmes must be intensified. Faith leaders may be considered as possible partners, and research should be conducted on methods for motivating religious leaders to support PLHIV and encourage them to follow the recommended treatment.