Living with Stigmatized Identity: An Interpretative Phenomenological Analysis of the Lived Experiences of patients with Chronic Illness in Ethiopia

doi:10.21203/rs.3.rs-2445735/v1

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Living with Stigmatized Identity: An Interpretative Phenomenological Analysis of the Lived Experiences of patients with Chronic Illness in Ethiopia

https://doi.org/10.21203/rs.3.rs-2445735/v1

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Introduction: - Anticipated stigma or the fear of future prejudice, discrimination, and stereotyping is a bad experience that harms the mental and physical well-being of individuals with chronic illnesses. Exploring the lived experiences of anticipated stigma is crucial for enhancing the standard of care for all patients, especially in countries with few resources. With this context, the goal of this study was to explore the experiences of chronic illness patients who attended follow-up clinics in the Amhara Region Referral Hospitals in Ethiopia.

Methods: Twelve participants with chronic illnesses were interviewed using semi-structured questions after being purposefully chosen from the University of Gondar Specialized Hospital and Felege Hiwot Specialized Hospital. The data were analyzed using an interpretative phenomenological inductive approach.

Results: - The overarching category was "Living with stigmatized identities." The three main themes identified were chronic illness, altered self, and suggested solutions to handle disease-related consequences and the disease outcome. Behavioral changes, discrimination, health service-related factors, stigma, solutions, and signs of the disease outcome were the six superordinate themes.

Conclusion: - Our conclusion that a stigmatized identity incorporates significant experiences related to chronic illnesses and an altered self leads us to recommend solutions that address both the disease's symptoms and its side effects. Reorganizing chronic care systems, using evidence-based protocols, improving patient education about opportunities and challenges, expanding access to senior chronic care experts, such as chronic care nurses, and expanding the availability of clinical management at the closest healthcare facility are among the interventions that are effective in improving outcomes in this group of patients.

interpretative phenomenological analysis

chronic illness

lived experience

Ethiopia.

As people live longer lives than previous generations, the prevalence of chronic diseases, also known as non-communicable diseases (NCDs), is rapidly increasing. Low- and middle-income (LMIC) countries accounted for nearly three-quarters of all NCD deaths and other consequences. NCDs account for 70% of all deaths, with chronic illness accounting for 85% of these (1).

For patients with chronic illnesses, the disease itself is considered a lessened attribute as it conflicts with a living situation such as productivity, consistency, and efficiency (2). Stigma harms everyone by instilling fear in ordinary people rather than focusing on disease prevention (3). The origin of the first term stigma is often drawn to early Greece, where a sharp stick, or "stig," was used to tattoo or brand marks on slaves, and criminals to signify their ownership or their inferior social position. However, there is no evidence that the early Greeks branded people with chronic illnesses in this way (4).

Stigma, prejudice, and discrimination are all stressful experiences that have a psychological impact on their targets. The lived experience of a chronic illness patient related to anticipated stigma is evident and affects the psychosocial stressors faced by individuals with chronic diseases (5–9).

Stigma is a widespread phenomenon in both low- and middle-income countries (LMIC) and high-income countries (HIC) (10). Stigma has been described as a diffuse phenomenon that expresses itself in a variety of ways as described by patients based on their lived experiences (11, 12). Living with chronic illness does not end with the properties of pathological disease management and control; a wide range of treatments and self-care activities are an essential part of the adaptive process (13, 14).

Different types of stigma are indirectly correlated with quality of life (15, 16). As it hinders access to services, increases harmful coping strategies (like cigarette smoking and alcohol consumption), and declines support-seeking behavior and disclosure or treatment adherence, it is socially and economically restricting and negatively affects the participation and decision-making of a patient (17–20).

Anticipated stigma, or the fear of future prejudice, discrimination, and stereotyping, is a negative experience that negatively impacts the mental and physical well-being of people living with chronic illnesses (21). Exploring lived experiences of a patient with chronic illness related to anticipated stigma is therefore critical in improving care for chronically ill patients in resource-limited countries. With this context in mind, the purpose of this study was to describe the lived experiences of patients with chronic illnesses who attended follow-up clinics at Amhara Region Referral Hospitals in Ethiopia.

Study design and period

A design of interpretative phenomenological analysis (IPA) was used. Individual semi-structured, open-ended interviews based on a topic guide were used to collect data. The research was carried out between September 1, 2020, and October 30, 2021. IPA does not adhere to rigid procedures or predetermined formulas but instead prioritizes rich, idiographic accounts through semi-structured interviews (22).

Interview guide

A semi-structured, open-ended interview guide with 11 items was used. The interview guide was organized around topics such as asking the participant about their chronic illness, their daily life situation, health institution challenges, experience and feelings related to stigma and discrimination, perceptions related to anticipated stigma, factors increasing or decreasing the lived experiences of anticipated stigma, any other situation related to stigma (felt stigma), proposed solutions to tackle anticipated stigma, and any additional information. The interview guide was developed based on a review of the literature and previous research on anticipated stigma (Table 1) (23).

Table 1

The semi-structured questionnaire was used for the interpretative phenomenological analysis of the lived experience of patients with chronic illness.
S.no	Main question	Follow-up question
01	Please tell me how it is to live with chronic illness.	Tell me more related to your experiences.
02	Could you please describe how it is to live with your illness in daily life? Please tell me an example.	What goes well in your relations with other family members and friends, health care professionals, and working place? What does not go well? How do you feel about it? What could be done differently in the future?
03	When you went for a check-up at the follow-up clinic lately, how did it go? Please tell me an example.	What went well? What did not go well? What could be done differently in the future? How did you feel when you were about to go to the clinic? How did you feel when you left the clinic? Why did you feel like that?
04	Could you please tell me a situation when you experienced shame or disgrace?	What happened? How did you feel? Tell me more about it.
05	What do shame, and disgrace feel like?	Provide examples from visiting the follow-up clinic, from family life or experiences, and working place in society.
06	Do you have any perception/belief related to prejudice, discrimination & stereotyping that will likely occur in the future?	If yes, please tell me more.
07	What do shame, and disgrace mean to your experience of living with your illness? Could you please think before you answer and provide me with a philosophical answer?	What behavior in others encourages your life experience and what makes you feel down?
08	Could you please list to me any factors which increase your feeling related to shame and disgrace feeling?	Which one comes first and last? The reason
09	Could you please tell me a situation when you felt humiliated or dishonored?	What did you feel? Tell me more about it. What did you feel and think of that person who made you feel humiliated or dishonored? Think before you answer and provide me with a philosophical answer, please. What behavior in others encourages your life experience and what makes you feel down?
10	What could be different in the future for people living with your type of illness?	What can be better at the follow-up clinic, in your family and among friends, and in working place? What can be better in terms of behavior and respect? What makes you feel happy? Encouraged? What makes you feel strong?
11	Is there anything you want to add related to feelings in your situation of living with chronic illness?	When do you feel frightened/secure? Sad/? Unsure/sure? Angry/content?

Setting and participants

The research was conducted in the Amhara Region of northwest Ethiopia at two comprehensive and specialized hospitals (the University of Gondar and Felege-Hiwot Comprehensive and Specialized Hospitals). We purposefully selected 12 adult participants (18 years of age and older) from the two chronic illness clinics at the hospitals for the study, in addition to two participants for pre-testing of the interview guide. Before beginning the interview, purposeful sampling, as is customary in qualitative research, was considered, taking into account sex and type of chronic disease. Inclusion criteria included patients with a chronic illness and a mental condition which allowed them to participate and talk about the phenomenon being studied (24). Open-ended, semi-structured interviews are dialogues that focus on the participant's lived experience of chronic illness and are employed to collect data for interpretative phenomenological analysis. A sample size of twelve participants on average has been recommended (25, 26).

The study included a total of 12 participants (six from the University of Gondar and six from Felege Hiwot Comprehensive Hospitals), with a mean and standard deviation (SD) age of 43 and 16.7 years, respectively. Four out of the twelve participants were males who were from rural areas. There had been four people diagnosed with HIV/AIDS, three with mental illnesses, two with cardiac illnesses, two with diabetes, and one with hypertension. The mean and standard deviation of years from diagnosis were 10 and 6, respectively.

Data Collection

A permission letter was sent to both the hospital directors and each clinical unit after getting ethical approval from the University of Gondar with reference number V/P/RCS/05/89/2020 on September 17th, 2020. After receiving consent from, the principal investigator approached the healthcare providers at each clinical unit who suggested potential participants. The purpose of the study was explained, and the participant's name and personal identifier have never been revealed. It was requested that the conversation be tape-recorded. The tape recordings were presumed to be transcribed and then permanently deleted. The participants were also informed that they were free to withdraw participation at any time and Informed consent (written consent) to educated participant or thumb signature to illiterate participant was obtained from all prior to interview, simply saying that they were fully aware of the purpose of the interview, that it was voluntary and confidential, that they could withdraw from the interview at any time without elaboration, and that they agreed to the tape recording. Having followed that, a consent form was signed.

A separate room was set up in the chronic illness clinic for the participants, and semi-structured interviews were conducted following the semi-structured interview steps.

Participants were encouraged to speak freely about their experiences with chronic illness and to explore, reflect on, and express their thoughts and feelings. This indicates that the participants led the discussion (26). According to the interview guide, the interviewer asked clarifications and posed follow-up questions to further explore experiences. The interviews were conducted in Amharic, the region's official and common language.

Analysis

For data analysis, an inductive IPA method was used, following the guidelines provided by different scholars (27, 28). The transcripts were 53 pages long, beginning with an analysis of specific examples and gradually progressing to a more general categorization of claims in the analysis.

First, all of the Amharic-language transcripts were read aloud several times. It was sent to a professional English language editor for translation after receiving approval from the participants. The final translated English version was reviewed by four senior research experts: two senior professors from the Karolinska Institute in a qualitative study, one from Addis Abeba University, and one from the University of Gondar.

Second, the research team looked for meaning units that were related to the objective. To facilitate the ordering of themes and sub-themes, text relating to these units was extracted from the transcribed document and inserted into the NVivo 14 computer software. The NVivo software enables text sections to be coded and ordered based on thematic experiences, but no computer software's automatic searching or ordering functions were used.

The six steps of analysis were used in the analysis process based on Smith and his colleague's research in IPA (29). Immersion in the original interview's reading and re-reading, as well as checking the transcripts for accuracy against the audio tape recordings, assure that the participant remains at the center of the analytical process at first. The second and most time-consuming step involved taking preliminary notes that explored semantic content and language while taking into account text associated with visual representations.

Third, for theme identification, each transcript was analyzed separately. Fourth, common themes were found. Sub-themes and superordinate themes were identified fifth. At last, an overarching main category emerged. The nature of the double hermeneutic in IPA means that the analysis is constructed both by the participant and the researchers; consequently, the researcher's interpretation is included in parallel in each section of an interview (30–32). Because of the interviewer's interpretative process, findings were not checked with participants after analysis, even though participants reported on the study's findings.

The findings of this study are divided into three major categories: 1. chronic illness and altered self, 2. suggested solutions, and 3. disease outcome; and six subordinate themes: (A) Behavioural changes; (B) Discrimination; (C) Health service-related factors; (D) Stigma; (E) Solutions; and (F) Signs of disease outcome. "Living with Stigmatized Identity" emerged as the overarching category from the analysis (Table 2).

Table 2

The interpretative phenomenological analysis of the lived experience of a patient with chronic illness attending a follow-up clinic at the University of Gondar Comprehensive Hospital and Felege Hiwot Comprehensive Hospital, Amhara Region, 2022 (n = 12).
Main Category I:- Chronic illnesses and an altered self
Superordinate theme	Sub-ordinate theme			Sub-themes
1. Behavioral Changes	Attitude			Denial (n = 17)
				Dependency feeling (n = 4)
				Feeling guilty (n = 3)
				Blaming themselves (n = 3)
				Feeling of hope (n = 12) - family need (n = 2) - personal feeling (n = 15)
				Health-seeking behavior (n = 3) - Good health seeking (n = 5) - Poor seeking (n = 12)
				- Self-confidence (n = 1)
	Knowledge of prevention			Personal awareness (4) - Coping mechanism (4)
	Knowledge of prevention			Poor knowledge (6)
3. Discrimination	Community discrimination (n = 33)
	Family & friend			Family (n = 1)
	Family & friend			Personal discrimination ( n = 17)
	Not disclose (n = 9)
	Reason for discrimination			Drug package (n = 6)
4. Health service related	Good health service			Compassionate care (n = 15)
	Poor health services			Burden on health prescription (n = 2)
				Afraid to mention (n = 3)
				Health service cost (n = 3)
				Poor health care service (n = 20)
5. Stigma	Anticipated stigma			Community stigma (n = 27)
				Family and friend - Family (n = 23) - Friends (n = 11)
				HCW Anticipated stigma (n = 14) - Working place stigma (n = 22)
	Consequences of stigma			Good quality of life (n = 25) - Positive outcome (n = 13) - No stigma (fam. & Fri) (n = 110) - No stigma (HF) (n = 8) Poor quality of life (n = 11)
	Felt stigma (12)			Community stigma (n = 19)
				Family and friend - Family (n = 9) - Friend (n = 13)
				Health institution - HCW stigma (n = 9) - HF Stigma (n = 13)
				Working place stigma (n = 7)
	Perceived stigma (n = 17)
Main Category II:- Suggested Solutions
Super-ordinate theme		SubordinateThemes	Sub-themes
6. Solution	Best solution ( n = 5)
	Family and friend			Family & Financial Support (n = 5) - family support (n = 22) - Financial support (n = 3)
				- Friend support (n = 4)
				Peer support (n = 15) Mental support (n = 6)
				Personal experience (n = 32)
	From community (22)			Community support (n = 16)
	From government (29)			Prevention of stigma in a health facility (n = 18)
Main Category III: - The disease outcome
Super-ordinate theme	Subordinate Themes			Sub-themes
7. Signs of disease outcome	Worsening (n = 13)
	Improvement			Accept the status (n = 9) Coping mechanism (n = 9)
				Mental capable (n = 7)
				Mental Satisfaction (n = 1)
				Good progress (n = 10)
	Risk exposure			Financial difficulty (n = 9)
	Risk exposure			War-related (n = 4)
Key:- HF = Health Facilities, HCW = Health Care Workers,

Study participants socio-demographic and clinical characteristics

The study included 12 participants ranging in age from 43 to 16.7 years (six from the University of Gondar and six from Felege Hiwot Hospitals). Four out of the twelve participants were males who lived in rural areas. There were four people diagnosed with HIV/AIDS, three with mental illnesses, two with cardiac illnesses, two with diabetes, and one with hypertension. The mean and standard deviation of years from diagnosis were 10 and 6, respectively (Table 3).

Table 3

Socio-demographic and clinical characteristics of the study participant (N = 12)
Code	Age (Years)	Sex	Residency	Year of diagnosis	Occupation	Type of Diagnosis	Time for interview
GC01	26	Female	Urban	8	Self	Cardiac (MI)	21 Min & 46 Sec
GC02	45	Male	Urban	16	HCW	HIV/AIDS	45 Min & 27 Sec
GC03	38	Female	Rural	14	Self	HIV/AIDS	18 Min & 27 Sec
GC04	77	Male	Rural	2	Priest	HPN	17 Min & 54 Sec
GC05	35	Female	Urban	4	Self	Mental illness	10 Min & 41 Sec
GC06	18	Female	Urban	3	Student	DM	23 Min & 57 Sec
FC01	55	Female	Urban	15	housewife	Cardiac	18 Min & 16 Sec
FC02	35	Female	Rural	12	HCW	HIV/AIDS	20 Min & 57Sec.
FC03	45	Female	Rural	4	housewife	Mental illness	14 Min & 44 ec.
FC04	35	Female	Urban	20	Self	Mental illness	14 Min & 31Sec.
FC05	72	Male	Urban	12	Military (retired)	DM	12 Min. & 44Sec
FC06	36	Male	Urban	9	Military	HIV/AIDS	39 Min & 56 Sec
Average	43.08			9.92			20 Min & 03 Sec
Standard Deviation	16.66			5.59
Key :- CHF = Congestive Heart Failure, DM = Diabetes Mellitus, HIV/AIDS = Human Immuno-deficiency Virus/Acquired Immuno-Deficiency Syndrome, HCW = Healthcare Worker, HPN = hypertension

Main Category I: - Chronic illnesses and an altered self

The main category that emerged as a result of chronic illness was an altered self as a result of stigma, discrimination, and various experiences in health services. The altered-self resulted from a shift in the attitude of chronic illness patients as well as increased prevention knowledge. The problems with the health-care system pushed the participants toward either negative attitude outcomes such as denial or feelings of dependency, or guilt about their disease status.

Superordinate theme 1: - Behavioral changes

If the participant received proper management and took basic precautions, their attitude toward the progression of their disease may change. The participants' positive attitude resulted in a sense of hope, good health-seeking behavior, and self-confidence.

A female participant with the diagnosis of HIV/AIDS said

“The most important thing for the person is to make sure that the CD4 level doesn’t ..eeee….decrease. (paused) Thus, I say that a patient with HIV can lead a better life if he/she treats him/herself well and takes medication properly. It is certainly possible to lead a normal life. Sometimes...I become, yet I try not to (Hide something and lose focus). I sometimes take my medication 10 or 5 minutes late (Hide something)” (P08).

Several studies have found that people's health behaviors affect their physical and mental health, as well as their ability to recover from chronic illnesses (33, 34). The other most important positive behavioral attitude report revealed in our interview was the development of self-confidence in almost all participants; a participant with a diagnosis of mental illness and living in Bahir Dar said: -

“I socialize with people and do activities with and like them. Thank God! I don’t drink and I have no other harmful addiction. I always stick to doctors’ advice and live a normal life. I am now staying with my brother. I pay no rent. I eat what I get and take my medication (Look calm)” (P09).

The most important component in chronic care management is the development of self-confidence; this evidence was supported by a random control trial study among chronic illness patients in Washington, USA (35).

Understanding the prevention aspects for future complications may help participants avoid the stigma associated with the chronic illness.

One of the participants with the occupation of military retirement and medical diagnosis of Hypertension and Diabetes Mellites said;

“Thank God! I am married. However, I am infertile and had no child. My wife as well is infertile. It was before I joined the military that I found out about my inability to have a child. … (talking without pause). Uhhh…my life…Glory be to God!... Uhhh… I feed myself properly. (Still talking without pause) …” (P11).

The other participant, a military veteran who was diagnosed with HIV/AIDS nine years ago, said;

“It is a very simple disease. They told me that I should care for myself, eat well and take my medication properly, and I would become healthier. That way I got used to living with the disease” (P12).

However, one-third of the participants reported having inadequate knowledge, which resulted in inadequate prevention. The majority of academics agreed that knowledge was one of the predictors of chronic disease management behavior (36). In Asian studies, health risk behavior was also linked to anticipated stigma (37). People who are subjected to stigmatized behavior, whether physically or socially, employ a variety of strategies (e.g., avoiding, denying, accepting, reducing offensiveness, and ignoring) for a variety of reasons (38).

Superordinate theme 2: - Stigma

There was a stigma, according to the participants. The stigma manifests itself in the form of anticipated stigma, felt stigma, perceived stigma, and consequences. The majority of participants said they expected stigma from family, friends, the community, health care workers, and their workplace. Due to stigma expectations from the community and family members, participant with an HIV/AIDS diagnosis stated,

Due to stigma expectations from the community and family members, participant with an HIV/AIDS diagnosis stated, “I have not exposed my status so far for fear of discrimination and stigma. Because of this, I didn’t expose myself as a patient with HIV (Low voice and she looks discomfort in the history)” & “Her mother had got wind of our status, yet I have always tried to keep it a secret from my wife’s family even though they were expecting me to tell them about it” (P12).

Anticipated stigma causes the patient to breach ART service standards, such as not disclosing his status; he stated,

“Disclosing that I am on ART would do nothing for nobody. It is of no use to show it or tell people about it. Then, I carry the medication in a plastic bag wherever I go so that I don’t delay a minute taking the medication”(P12).

The other participant with diabetes diagnosed and interviewed at the University of Gondar said

“I used to compare my condition with my friends’ condition and worry about what would my future be. I used to feel different until I came here” (P06).

Professor Valerie Earnshaw addressed this; she observed anticipated stigma in three dimensions: from family and friends, work colleagues, and health care facilities (21); Quality of life was related to anticipated stigma for patients with chronic illnesses (39). Patients may defer to health services reported in Ethiopian epileptic patients due to various types of stigma (40).

The other component of anticipated stigma related to health institutions and health care professional disciplines was also reported. A cardiac participant who was diagnosed five years ago stated,

“I felt desperate when the doctor told me that I might die. I cried. He has told me a lot of bad news” (P01)

An HIV/AIDS participant also said,

“Thus, I abstained from being examined at the organization for fear that the news of my HIV status might spread (laughing)”, she said “no problem (curiosity seen on his face), She conducted the test and handed over the result to her colleague before I learned it (High pitched). That was my fear! [laughing]” (P02).

During the same participant interview, we discovered that, despite his desire to avoid the expected stigma perception, he clearly shows the challenges faced by health professionals in the health institution on his face. The systematic review conducted by Dr. Nyblade L. and her colleagues backed up this point (41). Patients with chronic illnesses may be less open about their disease progression in the presence of health care workers who fear stigma. This expectation may impede healthcare providers' ability to provide satisfactory care. Patient satisfaction is related to good health-related progress. Patients who are dissatisfied with their healthcare have poorer health outcomes (42, 43).

In addition, many participants reported feeling stigmatized by family, friends, the community, and health care facilities. Eleventh participant from Felege Hiwot Specialized Hospital stated,

“Uhhh… when I am invited by people who are not close to me, I would rather send my wife on my behalf. Because people will criticize you if you complain about the food they offer you. They may assume that you are complaining in order either not to eat the food they prepared or not to eat with them” (P11).

Working place felt stigma by a rural female mental illness diagnosed patient, said,

“They used to ask why I was fainting and I forced myself to give up work. It was my brother-in-law who got me to start taking medication. Since then, I have always followed doctors’ advice and have never been ill” (P09).

A female patient who came from a rural area with an HIV/AIDS diagnosis said,

“ Ehuuu,,, Yes. There was such an instance (high-pitched and laughing). For example, eee… I used to feel embarrassed when people from church or other places spoke between themselves and whispered, thinking that they were speaking about me. I didn’t even put on the best of my clothes for fear that I might become the center of attention” (P03).

Twelveth participant, who lived in Bahir Dar and was diagnosed with HIV/AIDS for nine years, stated,

“I have felt embarrassed and have failed to take medication. This is because the society’s awareness hasn’t improved” (P12).

Another participant from the University of Gondar Specialized Hospital said,

“Uhhh.. in different directions started from my neighbors go out of my house used to tell me about her and ask me “how well I knew her?” “I became suspicious and asked my landlord about her and found out the truth. I did nothing as I discovered the truth. It has already happened and there was nothing I could do about it. If I disclose it might cause a quarrel between us” (P02).

Nine to eleven interviewees reported feeling stigmatized as a result of their chronic illness experience. According to the findings of a path analysis conducted by professor Valerie Earnshaw and her colleagues, participants who internalized stigma and experienced stigma from healthcare workers expected greater stigma from healthcare workers. Furthermore, participants who expected a high level of stigma from healthcare workers used healthcare less and had a lower quality of life (44).

Good and poor quality of life were the consequences related to the stigma experienced among the participants. Participant said,

“There was no instance of humiliation/ shame” (P01), “I have never been ill ever since I started taking medication. I am very serious about not missing my medication. I don’t drink Tela, Araqi (a local liquor), or any other alcoholic drink” and “Therefore, I am not embarrassed by my health status, for my fate is in the hands of God. Uhhh! I don’t feel bad at all” (P09).

Those were opportunities deemed beneficial to the overall well-being of the participant. However, in response to the poor quality of life associated with their experience with chronic illness, one of the participants with a mental illness stated,

“I do nothing else. I often feel drowsy, yet I don’t sleep well. I feel dull and depressed. There is no improvement at all. It all depressed me” (P05).

The other diabetes patient from Gondar Urban town said,

” Patients with diabetes would not contribute much to the family, for they become weak. I make a living renting out a plot of land. I live with my family. I am a student (Low pitched sound) ...” (P06),

and another participant had also said,

“I have isolated myself for a long including my family” (P03).

Various scholars have noted that the patient's quality of life has been related to their perception of stigma, such as in an Asian study conducted by Karl Peltizer and Supa Pengpid (2016), which found that the lower the stigma, the higher the patient's quality of life, and vice versa among Asian country studies (37). Another study from the United States supports the connection between quality of life and stigma (39). Different sources of anticipated stigma were found for being directly related to lower QOL, patient satisfaction, and social support (43).

Superordinate theme 3: - Discrimination

The majority of participants reported discrimination from family, friends, and the community. A female health care worker with HIV/AIDS who actively participated in Bahir Dar said,

“… people treated patients with HIV, ‘even if the patients were their children, like dogs’. They put them in isolation like dogs (with high-pitched voices and a look of wonder). …and ‘threw them leftover food”, “Besides, families discriminated against their members with HIV for fear that the disease would be transmitted through breath and physical contact” (P08).

Diagnosed with hypertension and diabetes participant said,

“It is embarrassing to not have membership in those local institutions and churches (high-pitched voice)” (P11),

Another participant mentioned family and community discrimination lead her to hide the status

“I used to feel ashamed and embarrassed. I also hide my status from people” (P09).

A diabetic participant from Enfranz Urban town said,

“I sometimes wonder what would happen to me if I expose myself. Some people would sympathize with you when they are knowledgeable. What worries me is that some people won’t understand” (P06).

Discrimination affected the patient's working conditions even in developed countries such as the United States. According to the Centers for Disease Control (CDC), roughly two-thirds of Americans suffer from a chronic illness. However, far too many people face discrimination and mistreatment while working and maintaining their health (45).

Superordinate theme 4: - Health service-related experiences

A significant experience mentioned by the participant was related to health care. The majority of the participants have had positive experiences with good health care delivered with compassion. To express good service quality, a different expression was used, such as,

“Thanks, God! I always come here, to this hospital, every time I feel sick or need any kind of service. The hospital is like home to me (laughing)” (P11).

” I am telling you only the truth. It is true (high-pitched voice). I know nothing of what other people have to say about the service. I am satisfied with the service here. They still treat me well even if I came late to my appointment. I approach the doctors and nurses as my family and they do so as if I am their own. It is they who treated me and got me to the good condition I am in now today. I, therefore, say that the service here is flawless”, & “Besides, the doctor has advised me to not get stressed, and I live by his words. I am nowhere taking medication for two months” (P09).

The WHO adopted the chronic care model (CCM) in 2004 as one of the benchmarks for improving care quality (46). However, only 48% of the health professionals studied in Ethiopia provided compassionate care (47).

Another difficult situation reported by a participant was related to health-care costs and the drug package for HIV/AIDS patients, and some participants were afraid to mention the difficulties, despite the fact that they existed. The current pandemic COVID-19 situation has had an impact on health-care issues. A participant with HIV/AIDS and a health professional in her field stated,

“However, it is not that the spread has decreased but the effort we exert is not much (Low voice). We all are not doing a good job. The current state of the country also counts as a challenge (also COVID-19). We provide patients only with pills. We don’t tell them what to do and how to take it. There is no quality counseling service as before” (P08).

The first participant from the University of Gondar chronic illness follow-up clinic said

“I suggest that there is no other gap other than the gap in this institution. Patients are referred to hospitals in Addis Ababa and overseas. They need to perform the procedure here. They are also warned that they won’t make it unless they have a transplant in one of the hospitals abroad” (P01).

According to, a lack of proper information on health-related counseling may cause them to be dissatisfied with the health service.

“I told him that I wanted to get pregnant if the medication would not affect my baby. If it had an effect, I was about to quit taking the medication. The doctor told me that he would discuss it with me the following month and gave me an appointment. When I came to see him the next month, I discovered that he had left(laughing)” (P10).

Also, another participant from Gondar said,

“There is a problem with the porters. As I came here late, a woman came to my rescue as I was worried to find my medical chart” (P03).

The interviewer noticed that participants three, nine, and ten were afraid to mention the health-care challenges during an interview. A study conducted among health professionals at Addis Abeba Health Professionals found that less than half of the participants received compassionate care (47).

Thus, health-related behavior encompasses various types of behavior, actions, and habits related to the maintenance, restoration, or improvement of their health (48). People's health behaviors were related to their prior knowledge of a specific health issue. People's health-related behavior is related to the individual and external cues to action, according to the HBM (Health Belief Model) (49).

Main Category II: - Suggested Solutions

Superordinate theme 5: - Solutions

All participants suggested family, friends, community, and government support as solutions. One of the major preventions of stigma associated with chronic illness was community support; one participant stated,

“...I also advise patients with HIV to consult the right persons when they face other challenges (laughing). Besides, they need to share their HIV status with their families so that the families would protect themselves from getting infected and support them” (P08),

Participant five said

“e…., I only said be strong. I advise fellow patients that they become strong and have faith that they will recover” (P05).

The South African random control trial study of HIV/AIDS patients supported this finding (50). Almost all interviewed participants said strong family and friend support was one of the solutions to handle anticipated stigma.

“My family treats me right (Good facial expression). They support me. They provide me with everything that I need. They said ‘she is seeking and needs our help” (P05),

Also, on the interviewer's exploratory comment for this participant shows family and friend support is the best solution. Participant six from Enfranz Urban town diagnosed with DM said

“Yet, my friend supported me and made me continue my studies. Besides, it was only when I saw people with the same disease that I started to have hope” (P06).

The first participant from the University of Gondar chronic illness diagnosed with a cardiac illness said,

“I have very good friends. Some were very supportive and considerate. They understood my situation and advised me about what I should and shouldn’t do” (P01),

On the same institution a patient diagnosed with diabetes mellitus said,

“I ask permission from my teachers to go home when my illness gets worse”, and “Yet, my friend supported me and made me continue my studies. Besides, it was only when I saw people with the same disease that I started to have hope”. “There is a friend of mine who is HIV positive and works for kebele administration. She advises me to go out and do anything available” (P06).

Friend support helped to avoid stigma experience participant five said

“….…I feel good and relieved when I engage in activities with my friends and spend time with them” (P05).

In an Australian study, positive support from family and friends led to a reduction in the various types of stigma reported by mental illness patients (51).

Governmental support for availing health services at the nearest station and receiving professional counseling was stated by most participants. The University of Gondar Hospital interview participant said,

“if patients are examined and treated timely and received the right medication….. they will cope with their disease” (P01), and

“In the future…. usually, the doctors give us appointments for us to collect medication. It is only once or twice that they do a general health check-up on us” (P10).

Poor management and control of chronic disease may lead to an increase in the anticipated stigma burden in the future, from the University of Gondar Hospital said

“We can’t speak of the disease forever. We were almost done when we stopped doing what we did best. If we could resume it, I hope we could be 90% or more successful. At this moment, I feel that there is something left unfinished. If we couldn’t do something about it, the spread of the disease will relapse and cause more harm (pandemic)” (P03).

The government must intervene to combat stigma. These, like four approaches and strategies implemented in Australia, England, and Canada, may have an impact on stigma reduction in our country (education, health literacy campaigns, contact, and peer services) (52).

Furthermore, participants 1, 6, and 12 mentioned that access to all services in the nearest location, raising awareness about chronic disease management and control at the health institution, and health professionals being ethical were the major proposed solutions mentioned.

Another lesson identified by the participant was from Felege Hiwot Hospital's mental illness clinic, which stated,

“In the future…. usually, the doctors give us appointments for us to collect medication. It is only once or twice that they do a general health check-up on us” & “Nonetheless, it would have been great if the full check-up was done most often. Sometimes, we get sick and run short of medication. At that time, it would be better for them to thoroughly diagnose us” (P10).

Main Category III: - The disease outcome

Superordinate theme 6: - Sign of disease outcome

The disease outcome with chronic illness was expressed by signs of patient worsening, improvement, and risk exposure in nearly two-thirds of the participants.

On worsening the disease condition, the one diagnosed with a cardiac problem said,

“I got sick. Last year, I was badly ill that I stayed in the Hospital” (P01),

“My health condition is getting worse. My whole body aches. It has been four years since I have been on medication”, and “I spend most of my time sleeping” (P05),

It was discovered during this participant interview that disease signs and symptoms, as well as drug side effects, have an impact on quality of life.

“There are times I get angry out of the blue” (P09).

Our findings were consistent with an Iranian study of 971 psychiatric veterans (53); worsening disease condition may result in poor quality of life.

Another aspect of the disease outcome was the signs of improvement observed among the participants. The mental capacity for the disease status, accepting the disease by coping mentally, and good progress signs were observed during the interview as indicators of participant improvement.

“Prejudice and abuse? ehh.... No. People have now an awareness. Rather, it is cancer, hypertension, diabetes, etc. that worries people most” (P08), and

“The only thing that worries me now is that I have no child. Other than that, I am thankful to God and I am doing well” (P03).

A coping mechanism for mental accepting the status was noticed in some participants.

“What patients are expected to do is to become mentally strong (low voice), e….eee…. Make use of the medical advice they receive and try to be happy” (P06), and

“Through time I came to convince myself that I can live with it. I modeled successful people and convinced myself that I shouldn’t embrace the fact that I am HIV positive (hope)” (P03).

On good progress signs participant, diagnosed with mental illness said,

“there are also times when the humiliation helped me to improve…..more…. myself” (P09),

And another one diagnosed with a cardiac illness said,

“Now, (high pitched sound), Glory be to God! I don’t always stay home. I meet people and even go to funerals. I do travel as I wish. I am very healthy” (P07),

Participants eleven and twelve demonstrated good adherence to their medication and health counseling in their explanatory comments. According to the research, good adherence is directly related to a higher quality of life and a lower risk of stigma (43).

Due to financial difficulty and war-related crises, there was a risk of further exposure. On financial challenges said,

“I am still unable to move out and live on my own financially “(P01),

“I had encountered no problem regarding the medication. Except for one of the medications which are expensive and unavailable, I buy the rest of my medication here. It is a red pill, and I take half of it at a time. Besides, it is very expensive. I buy the blood thinner drug here” (P07),

Another participant diagnosed with HIV/AIDS said

“I had no money to pay for food and didn’t eat either breakfast or lunch. Other than this, I was treated right. We can say that, no, I don’t have” (P03),

And in war-related crises, patients may be exposed to different risks like STI, participant diagnosed with HII/AIDS said,

“For instance, a number of our sisters and mothers who were in the war zone have been raped. E,,,,e,,, The government can at least arrange for them to get tested. Eeee,,, It needs to provide for their needs”, and “The shortage of medical supplies has been the talk of the country, yet the number of raped women who have been infected has not been discussed” and “I know many people with diabetes, and some of them have died because of a shortage of food (high-pitched sound). Similarly, many mothers and nuns have fallen victim to rapists due to war” (P12).

The lived experience of a stigmatized identity, which includes significant experiences related to chronic illnesses and an altered self, suggested solutions, and how to deal with disease-related consequences and the disease outcome, as well as all types of stigma among chronic illness patients. Anticipated stigma is an experience that has both a negative and positive impact on the lived experience of chronic illness patients.

Effective interventions for improving outcomes in this group of patients with chronic illness tend to fall into five categories: reorganization of chronic care systems, use of evidence-based protocols, improved patient education about the opportunities and challenges, increased access to senior expertise in chronic care, such as that of a chronic care nurse, and increased availability of clinical management at the nearest health institution. The challenge is to integrate these components into an integrated chronic illness care system, which will necessitate more financial and human resources.

Limitations and Strengths

As a limitation, this interpretative phenomenological study, like most qualitative studies, is limited by the small sample size and the possibility that self-selection bias reduced the representation of subgroups with higher or lower levels of anticipated stigma, which might have influenced the themes that emerged (54). The guidelines for conducting qualitative studies established by the Standards for Reporting Qualitative Research (SRQR) and the Consolidated Criteria for Reporting Qualitative Research (COREQ) were used to strengthen credibility (24, 25).

Furthermore, our participants were both patients and vulnerable. This could have an impact on our results. Perhaps they wanted to support our questionnaire but were afraid to raise issues other than the topic-guided question. We admit that performing an interpretative phenomenological analysis requires a lot of creativity. Using a small sample size makes it easier to manage. To control the credibility of the data, researcher triangulation and participant validation were used. Concurrent with data collection and analysis, an external team of four senior researchers audited the interview process and reviewed the quality of the data collection instrument and analysis process. Transferability was ensured by providing details on the participant's sampling strategies, data collection, and analysis procedures, as well as documentation of the researcher's previous experience. Finally, researcher reflexivity was used to test confirmability. Each interview was triangulated line by line using the researcher's interpretation (26). Despite its limitations, the study has important implications for a patient with a chronic illness who attends a follow-up clinic. It implies that it is critical to allow them to freely express themselves, discuss them with expertise, and give equal weight to both the participant and the interviewer. Furthermore, conducting qualitative research on this type of interpretative phenomenological analysis will allow participants to freely express their feelings. It is also important to note that investigating their lived experience may help to reduce future stigma and may create opportunities for policymakers and other parties to address their challenges.

HCW	Health Care Workers
HF’s	Health Facilities
HIC	High-Income Countries
HIV/AIDS	Human immune Deficiency Virus/Acquired Immuno-deficiency Syndrome
IPA	Interpretative Phenomenological Analysis
LMIC	Low and Middle-income countries
NCD	Non- Communicable Disease
SD	Standard Deviation
USA	United States of America
QOL	Quality Of Life

Acknowledgments

We'd like to thank all of the participants, as well as the two hospital clinical directors, for their help during the data collection period. We would also like to thank the University of Gondar School of Nursing for allowing us to conduct this research as part of one of the Ph.D. programs.

Availability of data and material

The datasets generated and/or analyzed during the current study are not publicly available due allowing of the raw data of this research requires obtaining official consent from University of Gondar Ethical Review board. And most of the data were can provide a clue about the patient identification. So, it could be available from the corresponding author on reasonable request.

Funding

The research reported in this publication was carried out as part of a Ph.D. nursing program at the University of Gondar and was not sponsored. The authors are solely accountable for the content which does not necessarily represent the official views of the University of Gondar.

Author information

Authors and Affiliations

Mohammed Hassen Salih, Assistant professor, University of Gondar, College of Medicine and Health Sciences, School of Nursing, Ethiopia.
Dr. Hussen Mekonnen, Addis Ababa University, Associate Professor, College of Nursing and Midwifery, Ethiopia.
Dr. Lemma Derseh Gezie, University of Gondar, College of Medicine and Health Sciences, Institute of Public Health, Associate professor of Biostatistics, Ethiopia.
Professor Helena Lindgren, Department of Women’s and Children’s Health, Karolinska Institute, Solna and Sophia Emmet University, Stockholm Sweden.
Professor Kerstin Erlandsson, Karolinska Institute, Department of Women and Children’s Health, Karolinska Institute, Solna and School of Health and Welfare, Dalarna University, Falun, Sweden.

Contributions

Mohammed Hassen worked to develop the topic, the proposal, the data collection, the data analysis, and the manuscript. Dr. Hussen Mekonnen was engaged in topic development, proposal development, data collection, data analysis, and manuscript writing and review. Dr. Lemma Derseh contributed to the creation the topic, the proposal, and the data analysis. Professor Helena Lindgren was engaged in the proposal development, data analysis, and manuscript review. Professor Kerstin Erlandsson worked to create the proposal, analyze the data, and write the manuscript. The author(s) read and approved the final manuscript.

Corresponding author

Correspondence to [email protected]

Ethics approval and consent to participate

The study was conducted by the Helsinki Declaration and approved by the University of Gondar ethical review board (IRB) with reference number (V/P/RCS/05/89/2020), on September 17th, 2020. Each participating hospital secured written consent from the appropriate authority.

Because our study collected data by interviewing participants prior to data collection, all participants were given full information that stated the patient's right (informed consent). Informed consent was obtained from all study participants. Informed consent was obtained from legally acceptable guardians of all illiterate participants.

Consent for publication

Not applicable

Competing interests

The author(s) declare that they have no competing interests.

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No competing interests reported.

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Living with Stigmatized Identity: An Interpretative Phenomenological Analysis of the Lived Experiences of patients with Chronic Illness in Ethiopia

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Abstract

Introduction

Materials And Methods

Study design and period

Interview guide

Setting and participants

Data Collection

Analysis

Results And Discussion

Study participants socio-demographic and clinical characteristics

Main Category I: - Chronic illnesses and an altered self

Superordinate theme 1: - Behavioral changes

Superordinate theme 2: - Stigma

Superordinate theme 3: - Discrimination

Superordinate theme 4: - Health service-related experiences

Main Category II: - Suggested Solutions

Superordinate theme 5: - Solutions

Main Category III: - The disease outcome

Superordinate theme 6: - Sign of disease outcome

Conclusion

Limitations and Strengths

Abbreviations

Declarations

Availability of data and material

Ethics approval and consent to participate

Consent for publication

References

Additional Declarations

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