Dual Burden: The Experience of Depression Among Women Living With HIV in Ethiopia- a Qualitative Study

Depression and HIV are common comorbid and their symptoms are inter-related. Depression remains disproportionately more prevalent among women who live in low-income countries and HIV circumstances, it is vastly ignored or not identied. Therefore, little is understood about the suffering of depression by women living with HIV (WLHIV). The purpose of this study is to explore the experience of depression among women living with HIV. A generic qualitative design was used. This research was part of a wider mixed-method study. The an-in-depth interview was carried out among women who follow-up Antiretroviral Therapy (ART) and who were eligible after depression screening. An interview guide was used for the data collection and the data was analyzed with the application of N-Vivo (version 11.0). Hence, a total of twenty-one women completed in this phase of the study. Seven themes and thirteen categories emerged. These included; stressful life events, the participation of social activities, concern over community acceptance, negative self-perception, feeling hopelessness, and coping with psychological disturbances. However, this nding has revealed, in the course of the multifaceted nature of HIV and depression comorbidity, women’s experience was not constant instead it remained dynamic which determined the different psychosocial and clinical dimensions of the illnesses. This study has elaborated that HIV positive women’s experience with depression was merely related to their psychosocial aspects, internalized personal attributes, disease traits regarding their life with comorbid diseases; HIV, and depression. Therefore, future initiatives should concentrate on incorporating mental health services in to clinical HIV set-up.


Introduction
Depression is a common psychiatric illness manifested by recurrent feelings of unhappiness, lack of motivation, and low self-worth. It is symptomatically expressed as a lack of or disturbed sleeping, loss of appetite, feeling of tiredness, and poor concentration (WHO, 2017).
Substantially, depression is a global public health burden affecting more than 300 million people around the world as indicated in WHO global health estimates. It is the third leading cause of disease and disability and it is estimated to represent 15% of the total global disease burden by the year 2020 (WHO, 2017). This health problem is the principle cause of preventable health issues with more than eighty percent from low and middle-income nations (2). Thus, Depression is the outcome of inter-related and complex associations of biological, psycho-social, and clinical factors. Individuals who have undergone social stress or emotional disorder with respect to their life events may develop depression which inevitably aggravates to distress and malfunctioning of the human body. In this stage the acquiring of comorbid infections is likely.
The risk factors and related correlates of depression were associated with socio-demographic and psychosocial aspects of the individual's life events. These factors are usually classi ed into ve categories biological risk factors, neuro-hormonal risk factors, psychosocial risk factors, lifestyle risk factors, and factors that contribute obstetric complications (3). Depression and anxiety are by far the most prominent cognitive illnesses which are associated with HIV infection. Different studies have investigated that the incidence rate of these two diseases is on the rise across many countries around the world. According to global burdens of mental disorder, by the year of 2030, depression is considered to be one of the leading cause of disease burden in low and middle-income countries (4) and among these people affected by the illnesses, 76% and 85% of them do not receive treatments.
In Ethiopia, a cross-sectional study conducted in Addis-Ababa has presented that the joint prevalence of anxiety and depression among people living with HIV was 24.5% while in their separate scoring, the prevalence of anxiety and depression was 32.4% and 41.2% respectively (5). Being in clinical stage-two, living without a partner, non-adherence to the ART treatment, complaining potential side effects of the drug regimens, were signi cantly associated with depression (6). Low awareness, lack of mental health policy, and lower health service utilization was accounted as the main barriers for mental health service in the country (7). This issue has drawn a tremendous public health attention for the last ve years and there has been wide-ranging interest on the need to generate evidence on the subject matter related to the comorbidity of depression and HIV (8)(9)(10)(11). However, very limited studies do exist and an increasing concern in resourcelimited developing countries of the world where people living with HIV do not get an early mental health screening (12), awareness and linking to mental health service to the same level in developed countries, and the impact on daily life is still growing (13). Even though the subject of depression and HIV has been widely studied in the eld of public health in Ethiopia, there have been no qualitative studies carried on depression among women living with HIV regarding their understanding and experience on depression.
Despite, the number of women affected by both illnesses is higher than the general population, yet much of the work in this area is limited and almost all studies have focused on the wider public, not overseeing to examine the most vulnerable groups like women living in low-income countries (14,15). Therefore, this study will exhaustively explore the experience of depression among Women Living with HIV (WLHIV) and the ndings of this study will be a baseline for the introduction of mental health screening in HIV care services.

Study design
A generic qualitative design was used for its relevance and emphasis on the understanding of social phenomenon from a different perspective (16). This study was part of the larger mixed-method study conducted on WLHIV.

Recruitment of participants
At enrolment, participants were selected by the principal investigator with the assistance of the ART nurse. Thus, in this study, a total of twenty-one participants were purposively selected from two public hospitals that provide ART services located in the town. As the larger study employed a mixed-method design, the recruitment process started with the rst phase which was the screening of depressive symptoms followed by the second phase of the in-depth interview. These women were contacted during their attendance in the ART service based on their eligibility from the depression screening results and participation in the previous phase.

Data collection
The interview was fully conducted by the principal investigator and to minimize the cultural barrier, a female nurse assigned in the ART clinic assisted the interviewer. These participants were reminded by the nurse through their handphones one day before the scheduled interview.
The investigator used an interview-guide which largely contained open-ended questions allowing participants to broadly discuss and present their experience of living with comorbid illnesses. This interview guide was developed from the existing relevant literature and the consultation of a psychiatrist with clinical experience (17) based on the research objectives. The interview session was carried in a private room next to the ART and lasted an average of 45 minutes.

Data analysis
All the interview was solely transcribed verbatim by the principal investigator in a quiet and prearranged room. All the transcripts were analyzed in their original language and a three-master of public health graduates were assigned to verify the translation to improve the constancy for the reporting purpose. However, the participant's common language and terms were considered as they carry their interpretation of emotional thoughts when accompanied by facial expressions and gestures. The interview questions were recorded into thematic distinctions to support the investigator's capture of the important points or opinions for the analysis in the NVivo software.

Ethical approval
Ethical approval was obtained from Jijiga University, Ethical, and Review Committee.

Results
Among the twenty-one interviewed women, there were twelve nulliparous and nine women with children, and the majority of the respondents were married. All women were currently receiving Antiretroviral treatment and their CD4 level was measured for the last six months. The following (Table 1) summarizes the women's demographic characteristics, their current CD4 test results, and clinical staging. The themes that emerged from the common events experienced by the studied women included; (1) stressful life events, (2) participation of social activities, (3) concern over community acceptance, (4) feeling of hopelessness, and (5) dealing with emotional suffering.

Theme 1: Stressful life events
Stressful life events refer to the emotional, economical, and physical expressions which were recognized by women who felt that their life was not going on well. Their shared expression of traumatic life events is then established as a theme from the frequent quoting of the local term "Mejenneq". This term is broadly stated in detail from women's expression of challenging circumstances linked with their low income and work strain.

Financial burden
Several women described their condition of living with less-income owing to either termination of work or unemployment as shown in (Table 1). This nancial insecurity was one of their main worries re ecting on the challenges to run family matters with fewer earnings. One of them has described her nancial problems stating; "I had no enough money to spend on my family needs at that time and I could not nd someone who may ease my situation. I am the only person providing all expenses in my family". (Zenith, L12-13) There was a feeling amongst a large number of women that being widowed or divorced and running the family task alone was a burden to bear lonely. Moreover, some of the interviewed women in this study described traumatic parenthood experience of handling all issues of family life.

Family work overload
Notwithstanding with expectations of social-based roles in the local community particularly women's position in family matters, one-third of the women described a lack of help from partners as a responsible contribution and worried about that they feel overburdened on domestic activities and working for earnings. This level of strain that the participant has repeatedly expressed might suggest as contributing factor for their susceptibility to developing psychological distress or even depression. Describing concerns on their casual of increased family load, some of the women repeatedly quoted "Yesira Ch'ana" representing the bulkiness and di culties of the task combined with adjusting her life with illness, and the role of handling domestic activities.
One of the participant's description gave the impression that she was in despair of emotional distress and mentioned; "I am obliged to be considerate for taking care of my sick husband, take care of myself by following-up on my treatment, and look after all tasks at home. At the same time responsibly be the breadwinner of the family". (Filagote, L21-L24)

Theme 2: Decreased participation in social activities
The concept of the women's reduced participation of activities including social engagements and their stand of interacting with others was explained by some of the interviewed women. This also included their experience of being isolated and feeling lonely adjacent to their psychological disturbance for not being active in their day-to-day activities.
Decreased social engagement Numerous women who were interviewed have explained their worries about not involving any social engagement. This was related to, their perceptions of not tting in, and feeling ignored. Possibly, the interesting narrative that signi es the thoughts of some women on being socially detached, was selfimposed isolation. It was also related to their perceptions of being unique from other people due to the illness or not getting other people's attention. Yet, they mentioned that they never shared their feelings with anyone. Thus, these feelings of absolute disconnectedness from the external world which shows these women's inability to interact with the surrounding people in a meaningful way.
This form of feeling loneliness was also determined by these women's moods of being unable to establish any social network which occasionally may be due to simply upholding con dentiality or maintaining the secrecy of her illness. Yet again, this practice may avoid them to seek support from others as some of the women appeared to use this loneliness as a coping mechanism to manage their distress and suffering.

Theme 3: Community acceptance
Most of the women described their unfavorable belief or perception regarded towards the community which included their expected fear of social acceptance and possibly worried about not receiving the deserved public attention due to their illness or impairment. Concerns of embarrassment, disgrace, and rejection surrounding the living experience of the interviewed women were merely the core feelings they shared.

Belongingness and support
As mentioned in the previous section, despite some of the women felt that the people have not appreciated any part of their actions, yet the impression from social stressors have exempli ed that women's focus on the signi cance of social support and being tted in with people who are close to them. One of the women described their feelings when positive attention was provided by surrounded people.
"For sure, any person who receives help from others will be grateful and pleased. I feel like any other human being blessed when someone supports me. Especially those who help me in emotionally in my days when I am not in a good mood" (Mare, L16-L18) However, a number of these women held in reserve indicating that some of the people's support may overtake their privacy and con dentiality if their status is known to others as explained in the following category.

Disclosing their illness
Disclosure-related concerns with the decision of whether, when, and how to tell their HIV status to others remained as a source of fear and anxiety for some of the studied women. Among the studied women who argued deferent reasons for why they kept their health status secret. One of the interviewed women revealed; 'Until now, I have not the courage to inform my illness to my family and friends, I need to remain unrevealed. Relatives and friends are the rst people who give emotional comfort and support when it is necessary but there is a limit for every offer. Living with a long-lasting disease is not easy to be accepted by my close people and feel anxious'. (Zenith, L35-L37) The potential risks that some women fear revealing their HIV status would place them for experiencing denial and rejection that affect their emotional stability. "I see! when you live with any lasting disease, it is for sure you get worried and fear as I do" (Serkalem, L4-L6) The possibility of developing stress because of the disease's unknown prognosis and its complex nature was acknowledged by many study participants. Women that personally assumed the cause of their emotional disturbance were due to the disease's unique manifestations and the unpredictable consequences, and most importantly the chronicity of the illness.
"This treatment is helpful but sometimes I feel endless fear. This is a dangerous illness. It may happen to be fatal suddenly, I stay careful because I am scared and I don't feel safe. (Fikir, L15) Hence, these accounted for the frequent and persistent fear of dealing the long term seeking medical interventions, and uncertainty of their fate of life and unpredictability of the illnesses progress.

Maintaining of self-management
Among the interviewed women's explanation on their effort of maintaining self-management practice included regular medical check-up, communicating with the hospital's consoler, and most remarkably some of these women's intentions to seek treatment from traditional healers. They explained how they got relieved from their emotional disturbance after seeking treatment from traditional Therapy.
Women mentioned: "Finally, I visited a local traditional healer and afterward I feel better" (Mahbuba, L19-L21) Re ections of a positive attitude Some women have described that realizing and accepting to live with the disease forever, provided them the strength and assurance of positive attitude and healthier thinking. Some of these women tried to justify their understandings of positive attitude, building hope, and adjusting with their emotions may help them cope with the stress. One of the interviewed women mentioned the importance of adjusting her emotions through the practice of positive thoughts and hope.

She stated:
"This illness is the same with other diseases, as far as I accept and take the drugs, I can live longer. I am different from other people. This is how I believe, and when I convince myself, I get relieved". (Meba, L75-L76) Therefore, thoughtfulness of positive attitude mattered for the women's coping style and their endurance toward the disease by interoperating negative sides of their life experience including social challenges to a remarkable optimistic situation.

Discussion
This study was driven by the limited existing information currently available on depression among women living with HIV in this study settings. It is aimed to expand the results of the previous studies which is de ned by the risk of comorbidity on HIV and depression. Several previous studies in Sub-Saharan Africa highlighted the need for further studies that examine these comorbidities from the perspective of gender (18)(19)(20).
Despite the vast majority of women have discussed their life with depression started from the date they were diagnosed, the duration of their illness, manifestations of the symptoms, the severity of their sufferings, and overall the diseases' impact on their daily lives was different. Regarding women's fear of recurrent illnesses, an all-encompassing theme has emerged as a "dual burden". This term is quoted by one of the interviewed women revealing her experience of depression and living with HIV. Thus, a number of these women described their life with another illness was more complicated and expressed the di culty to deal with a collective disease at the same time. This indicated that acquiring another illness was considered by these women to be risky, in a situation where dealing more symptoms from chronic illnesses consistently over some time. Inconsistent with these ndings, similar studies have narrated that acquiring comorbid illnesses have increased the rate of depression among People Living with HIV (6,(21)(22)(23)(24).
Moreover, among the interviewed women, most of them have described that their persistent worries and fear were related to their general well-being, nancial stability, and their social tting. This is consistent with other ndings similarly reported that women's distress was related to the extensive costs they are troubled when running the family task alone. This includes their concern over the di culties to raise and nancially support their children (25). Similarly, a qualitative study on the prevalence of depression among women living with HIV in Malawi has reported that women's nancial burden and relationship problems with their close families were a source of their depression (26). As mentioned earlier, this limited nancial resources of women could be re ected that economic dependency and subordination due to the possibility of restricted autonomy and less control in expenditures.
In line with these ndings, some of the women complained about their di culties in handling family work which was denoted by one of the participant's quotes from the local language "Yesira Ch'ana" representing their concern about the unusual burden of the tasks in their family. A similar study has found that women who were housewives with children and manage household affairs alone have manifested relatively a higher burden on parenting stress and suffered from psychological trauma (27). This could be ascribed due to women's tendency to be nancially dependent and poor or reduced probability to get access to education, paid work engagement, and political decision-making. Thus, it has been recognized that due to the lack of these protective factors women are disproportionately are at higher risk for depression when compared with the general population. Similar studies have reported that women's depression is in uenced by the increased exhaustion due to work overload that is neither acknowledged nor shared for various reasons. In reality, these circumstances of distinct gender-based division of labor have been observed in most low-income countries.
Consequently, women's reduced participation in social activities and preference to remain lonely was reported in this study. These women have presented various reasons including self-imposed social isolation and experience of stigma. This emotional and social self-imposed isolation and feeling loneliness were perceived by some women to have contributed to the growth of their emotional disturbances. Similar studies have reported that remaining loneliness was signi cantly associated with depression (11,28,29). The reason for these women's choice not to be involved in any social activities might be the experiencing of disease burden, feelings of not tting in the social, and anxious of becoming neglected. Also, some women have identi ed feeling less safe and more likely losing their hope of survivorship due to the beliefs of the disease severity and presumably the reluctance to prevent some of the immediate risk factors related to their way of life. This is similarly reported by a study on the experience of women on living with HIV, where hopelessness was one of the common constructs of traumatic circumstances that women have described in their feelings about the disease outcome (30).
Moreover, referring women's concern on revealing their disease status to others was of the prominent themes identi ed in this study. These women's choice regarding whether, when, and how they would tell their HIV status to others remained as a source of fear and distress. In this situation, their belief of possible risk of about revealing their HIV status would place them a state of denial and rejection which might in turn affect their emotional stability. This nding is consistent with other studies which demonstrated that perceived and internalized stigma was signi cantly related to poor disclosure pattern among HIV infected women (31)(32)(33). A qualitative study on depression suggested the involvement of female lay health workers (34) for depression management to enhance acceptability and minimize fear of stigma (35,36).
This decision of intentionally deciding to conceal their status of illness might have functioned as a protective reason for coping mechanisms and emotional stability. The two common reactions to these women for their psychological disturbances were identi ed as; maintaining self-management and a positive attitude. Few of them have described how they recognized their long term living with the disease which has given them the strength and assurance of healthier thinking. In line with these ndings, some published evidence has raised the issue of an individual's intrinsic drive like positive thinking would determine their coping mechanism (37,38).
Despite, the different coping strategies of dealing with depression by HIV positive women, the vast majority of these women tended to relate their health with their spiritual, describing their emphasis on their health and survivorship in connection with traditional healings. This is common practice in Ethiopia, particularly for patients with chronic illness, who have expressed their desire to use herbal treatment as spiritual healing. This is constantly reported in some of the studies conducted in sub-Saharan African (39).
Thus, the main ndings of this study signify the concept of social identity and individual perceptions which play an important role in in uencing the individual's psychological and behavioral wellbeing.

Conclusion
This study has elaborated that HIV positive women's experience with depression was merely related to their psychosocial aspects, internalized personal attributes, disease traits regarding their life with comorbid diseases; HIV, and depression. Yet, further investigations like long term longitudinal research are needed to examine how these comorbidities might have an impact on one another. permission letter was also gained from the Jijiga University board of review. The women participants in this study were provided a written document approved by IREC and informed consent then con rmed by their signatures for the use and dissemination of the study ndings.

Consent for publication
Not applicable Availability of data and materials The data used for this validation study is available and can be provided upon request by the corresponding author.

Competing interests
The authors declare that they have no competing interests Funding This study has not received any funds or grants from any institution or public and private sectors.
Authors contribution AY and SR: conception and design, data collection, statistical analysis, interpretation of data and drafting the manuscript. RM and ML: critical revision of the manuscript. All authors have contributed and approved this manuscript.