Participants’ socio-demographic Characteristics
A total of 25 patients (14 males and 11 females) were interviewed. The minimum age of the patients was 28 years and the maximum was 78 years. The minimum and maximum duration since diagnoses with EC were 1.3 to7 .7 months, respectively. Twenty four (96%) participants were from rural areas. In terms of education, close to 3/4th of participants were unable to read and write. The religious and occupational distribution showed that 22(88%) were Muslims and 23(92%) were farmers respectively (Table 1).
Table 1
Socio-demographic characteristics of participants, Arsi Zone, Oromia, Ethiopia, 2020
Characteristics
|
Sex of the participants
|
Males
|
Females
|
n(%)
|
n(%)
|
Age(years)
|
25–34
|
2(14.3)
|
1(9.1)
|
35–44
|
1(7.1)
|
1(9.1)
|
45–54
|
1(7.1)
|
2(18.2)
|
55–64
|
5(35.7)
|
5(45.4)
|
>=65
|
5(35.7 )
|
2(18.2)
|
Residence
|
Urban
|
1(7.1)
|
0(0.0)
|
Rural
|
13(92.9)
|
11(100)
|
Marital status
|
Married
|
12(85.7)
|
9(81.8)
|
Single
|
1(7.1)
|
0(0.0)
|
Divorced
|
1(7.1)
|
0(0.)
|
Widowed
|
0(0.0)
|
2(18.2)
|
Level of education
|
Unable to read
|
8(57.1)
|
10(90.9)
|
Able to read and write
|
3(21.4)
|
1(9.1)
|
Primary(1 to 8)
|
1(7.1)
|
0(0.0)
|
Secondary(9to 12)
|
2(14.3)
|
0.0%
|
Religion
|
Muslim
|
12(85.7)
|
10(90.9)
|
Orthodox
|
2(14.3)
|
1(9.1)
|
Family size
|
< 5
|
5(35.7)
|
3(27.3)
|
≥ 5
|
9(64.3)
|
8(72.7)
|
Participants’ clinical characteristics
Nine (36%) participants had tumors located at the lower thorax while 8(32%) of the cases had a tumor at the gastroesophageal junction (JEC). The majority of participants were diagnosed at stages three and four of cancer (Table 2).
Table 2
Participants’ clinical characteristics, Arsi Zone, Oromia, Ethiopia, 2020
Participants’ clinical characteristics
|
Sex of the participants
|
Males
|
Female
|
|
n(%)
|
n(%)
|
Tissue types
|
Squamous cell carcinoma
|
13(92.9)
|
11(100)
|
Adenocarcinoma
|
1(7.1%)
|
0(0.0)
|
Tumor locations
|
Cervical
|
1(7.1)
|
0(0.0)
|
Upper thorax
|
1(7.1)
|
0(0.0)
|
Mid thorax
|
4(28.6)
|
2(18.2)
|
Lower thorax
|
4(28.6)
|
5(45.4)
|
GE Junction
|
4(28.6)
|
4(36.4)
|
Tumor differentiation
|
Well-differentiated
|
1(7.1)
|
4(36.4)
|
Moderately differentiated
|
5(35.7)
|
4(36.4)
|
Poorly differentiated
|
8(57.1)
|
1(9.1)
|
Undepreciated
|
0(0)
|
2(18.2)
|
Cancer stage
|
Stage 1
|
1(7.1)
|
0(0.0)
|
Stage 2
|
1(7.1)
|
1(9.1)
|
Stage 3
|
6(43.0)
|
4(36.3)
|
Stage 4
|
5(35.7)
|
3(27.3)
|
Not staged
|
1(7.1)
|
3(27.3)
|
Severity of dysphagia
|
Requires liquid with meals
|
3(21.4)
|
3(27.3)
|
Able to take semi-solid foods but unable to take any solid foods
|
6(42.9)
|
5(45.5)
|
Able to take liquids only
|
5(35.7)
|
3(27.3)
|
The theme of the study
From the analysis of the interview, 53 codes, 8 subthemes, and four main themes were extracted. The themes were experiences of symptoms of esophageal cancer, pathways to seeking treatment and diagnosis, barriers to treatment follow-up, and challenges of survival with esophageal cancer.
Experiences of symptoms of esophageal cancer
Patients reflected on their knowledge of symptoms of EC by describing its meaning. Esophageal cancer was defined as KaansariiKokkee (meaning cancer of throat) and KaansariiLiqimsaa (meaning cancer of the esophagus) in the local language. Experiences of symptoms of EC were described as minor and advanced gastrointestinal symptoms. The minor symptoms experienced were vomiting, poor appetite, gastric fullness, regurgitation, and heartburn. Over prolonged durations, they experienced advanced symptoms defined as difficulty in swallowing foods and weight loss. The general experiences of the patients were, “… we experienced dyspepsia, gastric fullness, vomiting, poor appetite, and nausea at early stages of illnesses. Experience of difficulty of swallowing foods and finally water appeared later after several months. Until then, we did not think that it was such a serious problem.”
Experience of pathways to seeking treatment and diagnose
Pathways to treatment-seeking and diagnosis were described with the concepts of self-care, visiting traditional healers, and hierarchical health care service providers (Fig. 2).
Few patients managed early symptoms at home by avoiding foods that caused dyspepsia, changing foods from solid to semisolid, and by antacid syrups. The participants reported visiting traditional healers. They were treated with herbal medicines, holy water, and tonsil gland removal. They reported protracted vomiting, heartburn, and diarrhea after taking herbal medications. The experiences were substantiated as, “…after I experienced the difficulty of swallowing foods, I went to a local healer that removed my tonsils.”[P-19]
Three patients had tonsillectomy before diagnosed with EC while five patients had their tonsil cut by traditional healers after received the final diagnose (Table 3).
Table 3
Experience of self-care and traditional medications, Arsi Zone, Oromia, Ethiopia, 2020
Sex of the participants
|
Characteristics
|
Male
|
Female
|
n(%)
|
n(%)
|
Self-care practices
|
Diet modifications
|
5(35.7)
|
3(27.3)
|
Self medications
|
8(57.1)
|
5(45.4)
|
Self-medication and diet modification
|
1(7.1)
|
3(27.3)
|
Care from traditional healers before diagnose
|
Yes
|
12(85.7)
|
9(81.8)
|
No
|
2(14.3)
|
2(18.2)
|
Treatment received from traditional healers
before diagnosed or begun treatments
|
Herbs and holy water
|
11(78.6)
|
7(63.6)
|
Herbs and tonsil gland removal
|
1(7.1)
|
2(18.2)
|
Not visited traditional healers
|
2(14.3)
|
2(18.2)
|
Care from traditional healers after diagnosed and/or begun treatments
|
|
|
Yes
|
6(42.9)
|
5(45.5)
|
No
|
8(57.1)
|
6(54.5)
|
Treatment received from traditional healers after diagnosed and/or begun treatments
|
|
|
Herbs and holy water
|
4(28.6)
|
2(18.2)
|
Herbs and tonsil gland removal
|
2(14.3)
|
3(27.3)
|
Not visited traditional healers
|
8(57.1)
|
6(54.5)
|
Removing tonsil glands was reported as a common practice because of the strong perception that pus from swollen tonsils can initiate the growth of cancer in the esophagus. The experience was reported as “…The traditional healer whom we call a local surgeon told me that removing tonsils cures cancer. He removed my tonsil glands with a knife. I suffered heavy bleeding and throat pain. I did not eat food for days.”[P-14]
As the symptoms failed to abate, they went to local health care providers such as clinics, health centers, drug stores, and pharmacy and district hospitals. At local modern health care providers, patients were treated for gastritis for months “…I visited local health care providers repeatedly. We have been told that the symptoms are because of gastritis. They provided us antacid syrups and capsules.” [P-2]
After repeated appointments at local health care providers, patients sought treatment from private specialized clinics, higher private and public hospitals. Patients experienced multiple investigations and treatment for non-cancer symptoms before the final diagnose was confirmed. For instance one of the interviewees said the following, “… I visited many health facilities where I was repeatedly treated for heartburn. They referred me for investigations to specialized centers after several appointments”[P-12]
The median and Interquartile range (IQR) time elapsed from self-care to visiting the next health care provider was 25.6(11.8) days. The median (± IQR) time from the first symptoms of dysphagia to diagnosis was 3.6(2.7) months. All patients were diagnosed after they had developed dysphagia. One participant alleged the following to corroborate this,“…finally, they referred me to Tikur Anbassa Hospital in Addis Ababa six months after food began to stick to my chest; they told me that, it was cancer inside the tube that passes food.”[P-5]
Participants reported exhaustion, vomiting, dry mouth, and salivation while taking drugs. Interruption of treatment services and shortage of drugs were common phenomena. They were not interested in radiotherapy and reported the use of herbal medications after being diagnosed with esophageal cancer.
Experience of barriers to treatment follow up
Unanimously, participants agreed that very few patients go to higher referral centers for treatment follow up. Experiences of barriers to treatment follow-up were linked to health care services, economic constraints, and attitudes towards cancer treatment. The services were inaccessible and the costs for investigations were reported as unaffordable. Participants were discouraged about the effectiveness of treatment during medical consultations. Very few patients were counseled on medication side effects and the prognosis of the disease. The majority of patients were hopeless about their survival. A 58 years old patient on follow up said, “…You know! I am living 250 kilometers away from Addis Ababa where I had to go for treatment. Everyone living here including some health professionals advised me not to waste my resources. I have seen many individuals who died of the same cause. I believe it is Allah`s verdict. What can I do……….? I will go to my home and wait until death comes. That is what communities believe in our area. The disease is very worrying so do the processes for treatment.”[P-23]
The circumstances of the patients were very worrying because,” go home and wait for death” became a commonest experience. One of the interviewees stated the following to show this,”...immediately after diagnoses, many patients went back to their home and waited until they died. The commonest piece of advice for patients with such illnesses in our area is going home and waiting for death.” [P-10]
Experience of challenges to survive with esophageal cancer
Experiences of survival with EC were designated as problems associated with food intakes, treatment side effects, reduced quality of life, psychological and physical impairments. Patients experienced persistent vomiting, loss of appetite or taste for foods, and trouble swallowing that resulted in weight loss and weakness. They were extremely malnourished, entirely dependent on their families, and desperate about their future. They were very anxious, depressed, and did not think they would survive more than 2 to 12 months. They experienced unexplained pain, lack of sleep, and fatigue. One of the participants said, “…I take only water and milk. It doesn't stay in my stomach. I lost a lot of weight within a few months. I am very worried. I did not sleep for a week. I am losing control over everything.” [P-14]