Study area and setting

The current study was conducted in Addis Ababa, the capital city of Ethiopia. It is also the largest city in the country by population, with a total population of 3,384,569 according to the 2007 census. There are currently nine regional states and two chartered cities, Addis Ababa, and Dire Dawa. Among the nine regions, HIV prevalence is highest in Gambella (4.8%) followed by Addis Ababa city administration, the second-highest city from the overall country with HIV prevalence (3.4%), Dire Dawa (2.5%), and Harari (2.4%).

Research design

We used an Interpretative Phenomenological Analysis (IPA) design. This method primarily works with transcripts of semi-structured interviews. The analyzed themes were converted into a narrative account and also supported with verbatim extracts from participants.

Inclusion criteria

Patients who volunteered to participate in this study, were at least 18 years old or above at the time of diagnosis (we hoped to minimize recall bias). Participants for the current study permanently resided in Addis Ababa. They were aware of their HIV status and willing to consent and speak about their experience. Participants had at least prior exposure to severe weight loss secondary to malnutrition and recovered with supplemental foods provided at the health centre. They had lived at least one year with HIV with a full year of ten years.

Exclusion criteria

Exclusion criteria included patients with severe illness.

Data collection procedure

Open-ended semi-structured interview guides were provided before the data collection; the data collector (the researcher) piloted the instruments with five patients using ART. Adjustments were made for flow, content, terms used, prompts, and instructions. We translated the tools into the local language, Amharic.

An interview meeting was scheduled at a time and place suitable for the participant. Probes helped to follow a route of an investigation initiated by the participant. The primary author conducted the interview. We selected participants purposively until saturation of the data was reached.

Audio recordings and notes were made. There were two audio tape recorders in case of equipment failure. After all the questions were addressed, the researcher asked the participants if there was anything additional they wanted to discuss. The body language, verbal, and nonverbal cues were recorded using notes immediately after the interview. The researcher and other transcribers performed transcription. After the interview, transcription, and initial data analysis, the participant was contacted for transcription verification. The participant needed to verify that the transcription was exactly what she/he had said and verify the participant’s description of her lived experience. A total of 28 in-depth interviews were conducted using the most appropriate technique for data collection.

Ethical considerations

Ethical approval and clearance were obtained from the Institutional Review Board(IRB). Formal permission was obtained from the Addis Ababa Health Office for the respective health centres where the study was conducted.

The participants were reassured that none of the real identities would be revealed. All questions and concerns were addressed before signing informed consent. Participants were informed that there was no direct benefit from this study except an opportunity to talk freely about their condition, which could be either a distressing or helpful experience. Also, they were informed about the expected duration of the interview.

The location ensured the participant’s privacy and was mutually agreed. The participants were asked if they had any questions after completing the interview question guides. Written informed consent was received from the participants. The interview participants had the right to withdraw from the study at any time. If they did withdraw, there was no penalty, and the service they were receiving was not affected. They may refuse to answer any question or have the recording device stopped. If they did, the information would still be used unless they withdrew completely.

Data analysis

The recorded interviews were transcribed in Amharic and translated into English. The data were imported to NVIVO version 12 pro software following coding and synthesis. The current study summarized a large amount of data with the essential features of the interviews. As per Cress well’s description of six significant steps in analyzing data in phenomenology [11], the current study has followed six significant analysis steps. First, the data were managed by creating and organizing files so that they could be accessed easily for analysis. Second, we read and re-read the transcriptions, making notes in the margins identifying any sub-themes and emerging ideas to form baseline codes. Third, we described personal experiences throughout the period, attempting to identify the core meaning or essence of the phenomena, the concepts, or themes derived from the data. Fourth the data were classified by developing relevant statements. The statements were grouped according to significance and meaning in the coding process. Step five was the interpreting phase, which is a written description to answer what happened and how the phenomenon was experienced. Thus, the essence of the experience of the ‘participants’ was revealed. The final step was summarizing the study’s findings, and this has been also been supported with additional paragraphs that intend to interpret the meaning of the experience.

Scientific rigor and quality assurance

Operational definitions

The challenge of nutrition management is not being able to access and eat foods that help maintain the optimum level of nutritional status of HIV patients on ART, which can help them perform regular activities.

Nutrition management is a phenomenon of accessing and eating foods that help maintain the optimum level of nutritional status of HIV patients on ART, which can help them perform regular activities.

Weight loss: is referred to in this study as a reduction of weight among patients with HIV on ART secondary to malnutrition when other weight loss factors are ruled out.

PLHIV: Refers to the people living with HIV on ART 18 and above years of age and diagnosed as a case of HIV as per the records and who are attending selected ART Centers for treatment in primary health centres.

Participant characteristics

The study included 28 HIV patients on ART who lived in Addis Ababa. Twenty-eight participants were recruited from three governmental health centers. The ‘participants’ age varied from 29 to 61, with a mean age of 42 years. The participants reported that they were living with this disease from two to ten years. However, all the participants were living in a different Sub-city of Addis Ababa. Twenty-one of the women stated that they were Orthodox Christian by religion; six participants were Protestant Christian and only one was Muslim. Their marital status was reflected in four states: 11 were married, five were divorced, four were single, and eight were widowed. Regarding their employment status, eight of the 28 participants were unemployed, two were governmentally employed; and 17 were employed in the private sector as drivers, security staff, waitress, and daily labourer. One was a commercial sex worker (Table 1).

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Socio-demographic characteristics of research participants.

https://doi.org/10.1371/journal.pone.0250919.t001

Themes

Six major themes were identified from ‘participants’ testaments: acceptance of disease and health status; facilitators and barriers of drug adherence; behavioral change in eating pattern; the experience of food insecurity issues; nutrition knowledge; and support were assembled as a major challenge in their life course ever since their diagnosis. Also, it shows what their challenges to control their healthy lifestyle were. These themes were not restricted to a specific participant because the experiences of a single participant could belong to more than one theme (Fig 1)

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 1. Thematic map of identified themes: Interaction between themes and burden to manage nutrition among HIV patients on ART.

https://doi.org/10.1371/journal.pone.0250919.g001

Acceptance of disease condition and health status

The present result on acceptance of disease condition and health status is consistent with another study. A study also indicates that most HIV positive individuals have a challenge on accepting their condition at the very beginning. It also shows that sometimes that will take a long to accept the situation when patients have engaged in risky sexual behaviour, such as inconsistent condom use, that promotes the spread of HIV [12, 13]. Specifically, participants who perceived themselves at low risk were less likely to seek testing, regardless of risky reported sexual behaviour [14].

The present study shows that people were tested with reasons that made them get tested, which led them to experience challenges in accepting their Health Status. The forceful reasons that they commonly stated were known HIV illness and death of spouse, pregnancy and leaving the country. The current study is consistent with other studies [15]. The three significant factors that have been stated as inhibiting for Voluntary Counselling & Testing (VCT) service were fear of stigma and discrimination, fear of coping with positive HIV test result, and high HIV risk perception [16]. This finding is consistent with other studies that revealed that not having a plan to disclose the status of test results negatively affected the acceptance of provider-initiated HIV testing in pregnant women [17]. Moreover, dilemmas about going to the health centers were reported by educated participants as it leads them to poor linkage to the care. It is coherent with the findings of the study conducted by access to HIV counselling and testing in Ethiopia [18].

In the current study, religion is a factor for accepting a patient’s health and disease condition. The factor can be seen in two sections. According to other studies [19], religion and spirituality are the basic element for Ethiopians. They stated that spirituality has helped them cope with their problem because they will accept situations easily. This finding is consistent with another study [18] which showed that spirituality/religion helps people to cope with stressors, especially stigma/discrimination. On the contrary, the current study also shows that religion is a reason for not being able to start the medication early; rather, people with HIV prefer to go to the holy water and spend their time without starting any medication and eating well. Thus, they are prone to complicated situations and back to the health centre with serious illness. This contradiction might be due to the setting of the study area and participants’ social culture [20].

Experiences of food insecurity issues

The current study revealed that HIV patients who are on ART are suffering from different kinds of food insecurity issues. The factors are interrelated with availability, affordability, and use of foods which they consume. The food insecurity issue seemed to be a major issue for all themes such that patients felt comfortable when they are secured to manage the food availability, affordability and use. Therefore, when designing for active life expectations and managing the drugs, it is essential to consider the awareness of individuals as they do not know how to survive and live with their living standards. They felt at risk of not being able to survive. These findings are supported by different studies that revealed malnutrition among ART patients [21–23]. Therefore, there should be nutrition care at the primary health centre, which may be a more appropriate location for all individuals to manage their nutritional status and what it necessitates.

Facilitators and barriers of treatment adherence

The present study revealed that participants have suffered a lot of adverse reactions of medications. This also supported and coherent with a study conducted in Gondar that revealed that patients had a probability of facing three adverse effects from their ART regimen which is in contrast with a study done in Uganda, which reported that an average of five side effects could be possible; either way, the two findings from a related study setting revealed that ART drugs have side effects depending on its regimen [24]. In the current study, patients have reported repeatedly vomiting and gastrointestinal discomfort in contrast to these studies. This could probably be due to differences in ’ ’patient’s reports of adverse effects and the study settings, which is at the tertiary level where patients come in the more severe stages of the disease.

In this study, the critical ideas that summarize the theme were treatment knowledge and treatment know-how, emotions and passive tolerance of side effects, and nutritional advantages. Treatment knows how is low in the current study, which is inconsistent with a study conducted in Arsi [25]. Those who accessed the health institution far away (>20 km) from their home were found to more likely to use non-adherence as a coping strategy than those who were nearby (≤20 km), and this variation is might be due to the participants to the current study are using the nearby health centers because the setting is in Addis Ababa and also the study method [26].

Behavioral changes in the eating pattern

Respondents had a change in their eating pattern ever since they had been told about their health status. The lack of clarity about the composition of foods and what to eat leads them to have a variety of changes to their lives. These findings are consistent with many studies that explore how the changes have been made according to participants; their change influences their cultural eating practice due to the attention for their eating behaviour change. Losing one’s cultural practice might result from adopting a new culture. This has been seen in other studies where they assessed and have stated that to change negative health behaviours; one must first identify and promote positive health behaviours within the cultural logic of its contexts [27]. HIV patients in this study are avoiding foods that they have been told cause infections as they are immune-compromised, such as uncooked and cold foods, as it causes infections and leads to opportunistic disease [28].

On the other hand, supplemental foods are thought to be a new eating behavioural change in the current study that they are taking from health centres due to their under nutrition status. They have benefited and survived using the supplemental. This finding is consistent with the need for and use of supplemental foods for patients taking ART [29, 30].

Knowledge of nutrition

Nutrition knowledge is found to be the basis for all aspects of the current study as nutrition is essential for people with HIV, and relevant to immunity and improving one’s living condition. The more people are spending their time on a proper diet, the more they are a better at fighting their disease. According to the current study, participants do not have the basic nutrition concepts and sought information from health professionals. This is in line with other study findings such as a study conducted in Felege Hiwot referral Hospital [8] which revealed that dietary counselling was a significant factor for nutritional knowledge and sought to have nutrition education and counselling should be given by health care workers for patients using ART to improve their nutritional knowledge. A study conducted in Addis Ababa revealed that factors related to low adherence were a low level of education; poor knowledge is helpful to adhere to food and nutrition programs [31, 32].

Support

Regarding support and experience sharing among ART patients, in this study, patients did not have the chance to discuss issues with other patients. They highly recommend the intervention to help lead to practical changes. Some studies are consistent on how the importance of conducting this kind of program, which revealed that the difficulty of disclosure is not easy, and it is even very challenging for a couple to disclose and discuss their HIV status. However, some studies contradict the experience about sharing issues as it exacerbates social discrimination for people living with HIV [33, 34].