A flow chart depicting in detail each step involved in the study is shown below (Figure 1). The responses of the 610 participants were analyzed using SPSS 16 (Tables 1 - 4).
1. Participants’ demographics characteristics and preferences: The demographic data and responses to other questions were tabulated and categorical variables were compared using Chi-squared (χ2) tests (Table1). The majority of the participants (62.5%) were male, with ages ranging from 18 to over 65 years old. The mean age of all participants was 32.35 ± 13.13 years. Among the participants, 32.0% were single, 66.4% were married, and the majority (59.0%) had one or more children.
The 610 participants had been in Turkey for an average of 3 years at the time of the study. The primary countries of origin of the participants were Syria (20.7%), Iraq (20.0%), and Afghanistan (19.0%), with lesser numbers from Somalia, Sudan, Yemen, Democratic Republic of Congo, Iran, Kirgizstan, Ivory Coast, Ethiopia, Eritrea, Nigeria, Libya, and Ghana.
A majority of the participants (67.3%) stated that the main reason for their migration was war/security in combination with poverty, a significant minority (28.8%) indicated political oppression/persecution, and only 3.9% cited solely economic reasons. More than half of the participants (55.6%) were unemployed prior to migrating to Turkey, (15.7%) were tradesmen, (11.35%) were students, and small numbers were farmers and faculty members (both 0.7%). When asked where they would like to reside, 96.0% replied that they would like to move to a developed western country as soon as possible. Only (8.1%) responded that they preferred to remain in Turkey, while another (8.1%) expressed a desire to return to their country of origin. The participants’ Turkish speaking skills were significantly correlated with their length of stay in Turkey (p< 0.05). A small minority (13.3%) claimed to speak Turkish well, while the majority (58.5%) possessed moderate proficiency in spoken Turkish, and (28.2%) were unable to speak Turkish.
Decision-making regarding both migration and medical treatment: The question of who decides whether to migrate and who makes decisions concerning medical treatment allowed us to make a preliminary assessment of the relationship between decision-making and autonomy. When the participants were asked whose decision it was to migrate, nearly half (46.1%) of the participants said it was the male head of the household (husband, father, etc.), (39.0%) said other family members, and (14.9%) said the decision was made by women. Regarding medical treatment, (42.6%) of the participants stated that such decisions were made by doctors, nearly one-third (33.1%) said the patients themselves decided (33.1%), (22.0%) said a male authority figure (husband, father, etc.), and (2.3%) of the participants stated that medical decisions were made by joint agreement of the family (Table 1).
While 98.5% of the men who decided that their family should migrate stated that they made healthcare decisions, 67.2% of the women who stated that the male head of household made the decision to migrate also claimed that the same male made treatment decisions. Of all participants who jointly decided to migrate, an overwhelming majority (87.7%) indicated that they also made joint decisions regarding treatment. The χ2 independence test indicates the presence of a statistically significant relationship between the categorical variables in terms of gender (p < .01).
Table 1. Demographic characteristics and country preferences
Characteristics
|
N %
|
Marital Status
|
N %
|
Gender
|
|
Single
|
195 32.0
|
Male
|
381 62.5
|
Married
|
405 66.4
|
Female
|
229 37.5
|
Divorced
|
10 1.6
|
Mean age in years ± SD:
|
32.35 ± 13.1
|
|
|
Country of birth
|
N %
|
Profession
|
N %
|
Syria
|
126 20.7
|
Unemployed
|
339 55.6
|
Iraq
|
122 20.0
|
Tradesman
|
96 15.7
|
Afghanistan
|
116 19.0
|
Student
|
69 11.3
|
Somalia
|
96 15.7
|
Writer/Artist
|
22 3.6
|
Sudan
|
57 9.3
|
Athlete
|
20 3.3
|
Yemen
|
23 3.8
|
Interpreter
|
20 3.3
|
Dem. Rep. of Congo
|
16 2.6
|
Engineer
|
17 2.8
|
Iran
|
12 2.0
|
Office worker
|
11 1.8
|
Kirgizstan
|
8 1.3
|
Businessman
|
8 1.3
|
Ivory Coast
|
8 1.3
|
Farmer
|
4 0.7
|
Ethiopia
|
8 1.3
|
Academic
|
4 0.7
|
Number of children
|
N %
|
Reason for migrating
|
N %
|
Single/divorced 0
|
221 36.3
|
Economy/unemployment
|
24 3.9
|
Married 1 - 2
|
33 5.4
|
War/security and poverty
|
410 67.3
|
Married 3 - 4
|
52 8.5
|
Political persecution
|
176 28.8
|
Married 5 - 6
|
183 30.0
|
Country Preferences
|
N %
|
Married ≥ 7
|
121 19.8
|
Canada, USA, EU, Australia
|
594 97.4
|
(singles excluded) mean ± SD: 3.97 ± 1.809
|
Turkey
|
8 1.3
|
Migration decision-making
|
N %
|
Country of birth
|
8 1.3
|
Men (single/married)
|
281 46.1
|
Turkish proficiency
|
N %
|
Women (married)
|
91 14.9
|
High
|
81 13.3
|
Joint decision (married)
|
238 39.0
|
Medium
|
357 58.5
|
|
|
None
|
172 28.2
|
|
|
Language proficiency was significantly associated with length of stay
|
(p < .05)
|
2. Refugees’ access to information on healthcare
The data for this section are presented in Table 2. When asked to identify their main problems, a majority of participants stated that shelter was a major issue (80.3%), followed by nutrition (66.6%), choosing which country to settle in (56.2%), and health issues (50.7%). An overwhelming majority (92.5%) found it easy to access healthcare services during their stay in Turkey. Approximately half of the participants had received assistance from their Turkish neighbors in the form of transportation to the hospital (50.3%), and a lesser percentage had received help from their compatriots (32.5%). Over half of the participants also indicated that they were satisfied with the free healthcare services (52.0%).
Table 2. Refugees’ problems and healthcare access
1. Main problems
|
N %
|
5. Satisfaction with healthcare services
|
N %
|
Shelter
|
490 80.3
|
Yes: free of charge (care, transportation, medicine)
|
317 52.0
|
Nutrition
|
406 66.6
|
Sometimes: easy access but long waiting times
|
166 27.2
|
Which country to settle in
|
343 56.2
|
No: long waiting times, cultural and communication issues
|
127 20.8
|
Health
|
309 50.7
|
6. Patient rights
|
N %
|
Education
|
160 26.2
|
Aware
|
107 17.5
|
Employment
|
160 26.2
|
Unsure
|
199 32.5
|
|
|
Not aware
|
304 49.8
|
2. Access to health care
|
N %
|
7. Informed consent
|
N %
|
Easy
|
565 92.5
|
Aware
|
78 12.8
|
Sometimes easy
|
39 6.4
|
Unsure
|
146 23.9
|
Difficult
|
6 1.0
|
Not aware
|
386 63.3
|
4. Information to access healthcare services
|
N %
|
8. Time in Turkey (years)
mean ± SD: 3.02±1.534
|
N %
|
Turkish neighbors/people
|
307 50.3
|
0 - 2
|
85 13.9
|
Community friends
|
198 32.5
|
3 - 5
|
175 28.7
|
Immigration offices
|
105 17.2
|
≥ 6
|
350 57.4
|
To better understand their problems accessing the healthcare system, interviews were conducted with the relevant participants, with written records made of the discussions. In the interviews, the following themes emerged as the main reasons why they avoided going to the hospital or clinic:
1. Language barriers: Their lack of knowledge of Turkish presents serious communication problems and also explains why they were not aware of their right to free health care as refugees. One of the 45 refugees who complained about access to healthcare stated: “If we do not speak Turkish or English we have to communicate through an interpreter. But it always seems as though something is missing from the translation. We feel that we cannot express ourselves very well, nor make ourselves understood.”
2. Concerns related to refugee status: As one refugee noted: “We do not feel safe due to our refugee status, which is only granted temporarily. We would like the UNHCR to help us get to the EU, USA, or Canada, where we want to live as citizens.”
3. Fear of police investigation: One of the refugee families stated that they hid crimes involving weapons/knife injuries, underage pregnancy, rape, suicide attempts, domestic violence, and/or drug use. “We fled from war, oppression, and poverty, but still could not achieve the conditions we desired. After escaping, new troubles appeared, and we are still worried about our future. This situation has also triggered some domestic problems in the family. For this reason, we have had health problems, but we do not want to lose our refugee status, so we feel as though we should hide our health problems, even various injuries, sexual assaults, or suicide attempts.”
4. Anxiety concerning future immigration to western countries: Almost all of the refugees inquired as to when they would be able to move to the EU, USA, or Canada. They discussed their own efforts to do so and the obstacles they faced and requested that the researchers help them in this regard, in particular, to contact UNHCR authorities. “Turkey is good for a short time, but we want to go to the EU or Canada. In fact, we have relatives in these countries, we want to live together with them. Please convey this to the authorities.”
Despite our questions concerning democracy, women’s rights, and human rights, most of the participants did not discuss these issues; only two of the refugee families broached these topics. One Afghan woman said, “We escaped from the Taliban because the Taliban prevent women from working. I am a TV programmer, but the Taliban did not allow this and also forced us to wear burqas; covering our hair is not enough for them.” One Iranian family also stated that they fled for political reasons. However, the participants’ major concerns all involved the four items above (language barriers, refugee status, fear of police, and future immigration prospects). This may be due to the urgency of these problems or because they have not yet thought about democracy, women’s rights, patient rights, and/or human rights, even within the context of their own lives. A separate study to explore this in more detail could prove fruitful for understanding the apparent lack of interest in democracy and human rights on the part of MENA refugees.
Decision-making in terms of autonomy and informed consent: The study data concerning autonomous decision-making on the part of patients are presented in Table 2. In reviewing these responses, some common attitudes among the participants emerged. For example, large numbers stated that they were either not aware of or unsure of patient rights (49.8% and 32.5%, respectively), and a majority reported no knowledge of autonomy-based informed consent (63.3%). A plurality (42.6%) stated that their doctor should decide their treatment, with (33.1%) preferring to make such decisions themselves, and (22.0%) deferring to the male head of the family (Table 2).
3. Informed consent questionnaire:
The responses to the informed consent questionnaires provided further information regarding the views of both the male and female participants (Table 3). Overall, males were accepted as leaders and therefore as primary decision-makers. However, the feedback given in response to the below eight statements indicated that women also desired to be involved in the decision-making process as individuals.
The participants’ statements contained in the informed consent questionnaire were as follows:
Table 3. Knowledge of and views on informed consent according to gender
1. “I appreciate the doctors’ positive and friendly demeanor.” While the male participants stated that positive behavior on the part of healthcare professionals was definitely important (35.6%), this rate was higher for women (42.4%); the difference was significant (p < .05).
|
2. “I would like my doctor to tell me all about my illness”. Less than half (43.4%) of the male participants indicated that this was definitely important, while the rate for women was over half (54.2%) (p < .01).
|
3. “I would like to learn about all available treatments related to my condition.” Less than half (46.6%) of the male participants declared this to be definitely important, while nearly three-quarters of the women did (74.2%) (p < .05).
|
4. “I would like to decide on my treatment myself.” There was a significant difference between female (36.1%) and male (40.0%) participants with respect to this statement (p < .05). The majority of participants of both genders preferred to decide on treatment together with their doctors.
|
5. “I would like to know all the risks and benefits associated with the proposed treatment.” Women (41.5%) stressed the importance of being aware of all the potential risks and benefits of treatment more than men (34.8%) (p < .01).
|
6. “I would like to know all about the treatment.” There was a significant difference between men (36.1%) and women (40.0%) with respect to agreement with this statement, the latter being more curious than the former (p < .05).
|
7. “I would like the doctor to first inform me about my disease, before informing my family.” There was no significant difference between the responses of male (44.9%) and female (44.7%) participants.
|
8. “The doctor should not inform my family about my condition without my permission.” A lower percentage of men (28.2%) than women (34.8%) agreed with this statement. The χ2 independence test determined that the difference between the genders was statistically significant (p < .01).
|
Table 4. Cronbach’s alpha test results to determine the internal consistency of informed consent questions
Medical Ethics Questions
|
Definitely important
N %
|
Very important
N %
|
Moderately important
N %
|
Somewhat important
N %
|
Not at all important
N %
|
Cronbach's Alpha
|
Q1
|
480 78.7
|
60 9.8
|
46 7.5
|
23 3.8
|
1 0.2
|
.698
|
Q2
|
518 84.9
|
39 6.4
|
30 4.9
|
17 2.8
|
5 0.8
|
.706
|
Q3
|
467 76.6
|
57 9.3
|
45 7.4
|
38 6.2
|
3 0.5
|
.658
|
Q4
|
382 62.6
|
48 7.9
|
65 10.7
|
114 18.7
|
1 0.2
|
.699
|
Q5
|
466 76.4
|
36 5.9
|
33 5.4
|
73 12.0
|
2 0.3
|
.684
|
Q6
|
479 78.5
|
35 5.7
|
28 4.6
|
67 11.0
|
1 0.2
|
.677
|
Q7
|
418 68.5
|
57 9.3
|
92 25.2
|
38 6.2
|
5 0.8
|
.679
|
Q8
|
383 62.8
|
53 8.7
|
143 23.4
|
25 4.1
|
6 1.0
|
.702
|
Cronbach’s Alpha Based on Standardized Items: .72 N=610