Misconceptions about brain injury in Turkey

Brain Injury, May 2013; 27(5): 587–595

Misconceptions about brain injury in Turkey

_ _ ILKNUR MAVIS¸ & DIDEM AKYILD IZ _ Anadolu University, Center for Speech and Language Disorders (DILKOM), Eskis¸ehir, Turkey

Abstract Primary objective: The aim of the study is to provide information about the knowledge and beliefs that people have regarding brain injury and to examine if the misbeliefs of adults in Turkey are similar to the misconceptions previously reported in the US and UK. Methods and procedure: Two hundred and fifty-three respondents answered questions about general brain injury knowledge, coma and unconsciousness, memory deficits and brain injury recovery in a questionnaire. Chi-square analyses revealed significant differences based on age, education and gender. Significant differences were determined between Turkish and US participants and Turkish and UK participants by Student t-test analysis. Findings were compared with those reported by previous researchers from the UK and US who administered the same questionnaire. Main outcomes and results: A close examination of the survey makes it clear that the percentages for the ‘general knowledge on BI’ were found to be higher. Participants’ levels of accurate information on coma and unconsciousness and memory deficits ranked secondly and thirdly, respectively. The recovery process paled in significance, as it did not feature very highly. Conclusions: The general public should be informed about the seriousness and pervasiveness of the problems related to consequences of BI before taking decisions concerning language or cognitive therapies for their victims. Healthcare professionals should take roles in advocating reliable publicity primarily by dispelling misconceptions about BI. Keywords: Brain injury, misconceptions, questionnaire, Turkey

Introduction The prevalence of brain injury (BI) in Turkey has gone up since the number of motor vehicles and the frequency of physical assaults have been increasing and the possibility of falling and head injuries have augmented due to longer lifespan of old people [1]. According to the epidemiological data published in 2000, the classification of BI in Turkey reads as follows: traffic accidents including motor vehicle crashes (48.8%), falls (36.5%), penetrating stab wounds (3.3%), gun shots (1.9%) and diving (1.2%) [2]. BI is the world’s leading cause of deaths for people between 1–45 years of age, while the yearly number of new BI cases in the US is 1.7 million and over

140 000 in UK. The situation in Turkey is not much different. Annually, 300/100 000 of the population is admitted to hospitals due to brain injury and almost 9/100 000 are not able to survive; that is, roughly 5500–6000 people die of BI in Turkey each year. The statistics also indicate that the age group of 18–25 years is the highest risk group, but BI is the most often cause of death for the paediatric group as well. The frequency of BI among children is 185/ 100 000 annually and they are clinically diagnosed with amnesia, focal neurological findings, unconsciousness and score lower than 15 in the Glasgow Coma Scale [3]. Accidents are the third frequent reason of deaths and disabilities for children between ages 1–4 years in Turkey and one third of child deaths is a result of home accidents. Penetrant brain

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(Received 29 January 2012; revised 4 July 2012; accepted 22 January 2013)

_ _ Correspondence: Ilknur Mavis¸, Associate Dr, Anadolu University, Center for Speech and Language Disorders (DILKOM), Eskis¸ehir, Turkey. Tel: 0 90 0532 4809807. Fax: 0 222 3352337. E-mail: [email protected] ISSN 0269–9052 print/ISSN 1362–301X online 2013 Informa UK Ltd. DOI: 10.3109/02699052.2013.772236


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injuries do not feature very highly in this figure. The literature review yields rare cases of piercing or drilling object, which lead to penetrant brain injury [4]. Public information about brain injury is mostly based on hearsay evidence. One of the earliest studies documenting misconceptions about the disorder held by public at large was conducted by Gouvier et al. [5] and the results revealed that little was known about amnesia, recovery and pathological cognitive conditions of sustaining brain damage. It is noteworthy that a high percentage of misconceptions mainly regard the sequelae of brain injury [5–9]. The pioneering study on misconceptions about brain injury was recognized by a survey [9]. In this study, 318 participants were asked to fill out a questionnaire containing 17 items with options of ‘true or false’ for statements concerning general knowledge, coma and unconsciousness, memory deficits and recovery process. In another study conducted in Britain, the same 17-item survey was administered to 322 participants [10]. Results of both questionnaires showed that the majority of the US participants had strong misbeliefs, especially tied to the statements of memory and recovery, and UK participants were identified to have misconceptions, especially concerning statements of coma and consciousness and recovery. Unfortunately, misbeliefs are not only limited to the general public; even some members of healthcare staff form misconceptions. Swift and Wilson [7] conducted 19 semi-structured interviews with patients who went through BI, their caregivers and non-expert health professionals, the results of which confirmed that all groups had misbeliefs about recovery from BI, the extent and duration of recovery, capabilities of patients with BI and the consequences following BI. In addition, Farmer and Johnson [11] found that one third of rehabilitation professionals and almost half of the educators had misconceptions concerning BI. Other health professionals such as school psychologists and speech-language therapists (SLTs), whose job description include assessing and conducting therapies for BI patients, may sometimes procure wrong information about brain injury [12, 13]. Similarly, Hux et al. [14] administered a questionnaire to school SLTs to determine how much they knew about BI and if they were ready to provide rehabilitation services for young BI patients. SLTs stated that they were hesitant to work with BI children and their responses revealed that they had misconceptions about diagnostic and therapeutic needs of BI individuals. In a research study in which public awareness about neurogenic diseases leading to speech and

language disorders was examined with 196 Turkish participants, Mavis [15] investigated which neurogenic disorder was known by its name and characteristics. Results pointed that disorders known by their names actually were unknown in terms of their characteristics. Epilepsy and dementia were often recognized by both their names (96% and 81%) and characteristics (89% and 76%, respectively), while MS (Multiple Sclerosis) and BI were among the least known. To be precise, MS scored 33% and 20% when it comes to its name and characteristics, whereas BI scored 67% and 42%, respectively. This awareness study will hopefully underline the importance of improving community knowledge among all other awareness studies conducted to unveil the unknown or misbeliefs about the disorder. Consequently, the focal point of this study is (a) to compare the findings of the research with other studies conducted earlier [9, 10], utilizing the same questionnaire in the US and UK, and to see if similar or different misconceptions that have been reported in the mentioned studies are also endorsed by adults in Turkey, (b) to unfold what is known and unknown about BI through a questionnaire administered to various Turkish individuals from different age, gender and educational backgrounds and (c) to demonstrate if the aforementioned variables affect misconceptions about BI in this study.

Method Setting and participants This study was carried out in Eskisehir, a city in Central Turkey, with 755 000 inhabitants. The city has two state universities with an 42 000 student population. Besides, 74 000 more students are studying in schools, ranging from kindergarten to high school ages. Besides the young population, the individuals over 75 years old are numbered as 18 355 [16]. The only Centre for Speech and Language _ Disorders (DILKOM) founded in Eskisehir is affiliated to Anadolu University, in which MA and PhD Programmes are available for speech and language therapy. Language and cognitive assessments and therapies are given in the aforementioned Centre. The BI questionnaire was administered to a convenience sample of 253 participants living in Eskisehir, Turkey. Eighty-four of them are caregivers of the BI patients admitted to the Neurology and Neurosurgery Clinics of the Faculty of Medicine (33 individuals) and to the Centre for Speech and Language Disorders of an affiliated university (51 individuals), 88 are parents of children attending private or state schools and 81 are professional vehicle drivers (47 individuals) and applicants

Misconceptions about brain injury in Turkey

589

Table I. Study participants. Age 20


n %

19 7.5

21–30 48 19.0

31–40 116 45.8

Gender 41–50 54 21.3

51–60

Education

Female

Male

8

126 49.8

127 50.2

86 34.0

16 6.3

11 75 29.6

11þ 92 36.4

attending intense training courses to get a driver’s license (34 individuals). The number of males and females are almost equal in number (127 males, 126 females). Participants were categorized into five age groups (below 20, x ¼ 18.4, SD ¼ 1.38; 21–30, x ¼ 26.3, SD ¼ 2.83; 31–40, x ¼ 35.2, SD ¼ 2.74; 41–50, x ¼ 44.7, SD ¼ 2.86; and 51–60, x ¼ 55.5, SD ¼ 3.30) and three education levels (primary school, high school and university). The mean age of the participants is x ¼ 36.5, SD ¼ 0.58. Table I displays demographic information of the participants.

between ‘true and probably true’ and ‘false and probably false’ options. SPSS 19.0 and MINITAB 16.2 were employed for statistical analyses. Chisquare analysis (2 test) was utilized to see if there were any knowledge differences between respondent groupings of age, gender, education and the participating groups. ‘Student t-test for two proportions’ was performed for the questionnaire items to determine significant differences between (a) Turkish and US participants and (b) Turkish and UK participants.

Questionnaire and procedure

Results

The questionnaire that was originally developed [5] with 25 items and was later modified to include 17 items [9] has been used in this study. The instrument, which is highly functionally used in the related literature, contains four parts. The first part regarding general knowledge about BI includes four items (1– 4), the second on coma and unconsciousness contains three items (5–7), the third on memory deficits is furnished with four items (8–11) and the fourth part on recovery process includes six items (12–17). Assessment of the questionnaire is carried out on the basis of true and false responses. Eight of the 17 items are true (1, 2, 7, 10, 11, 13, 14, 17) and nine of them are false statements (3–6, 8, 9, 12, 15, 16) (Table II). In accordance with the original survey, ‘true, probably true, false and probably false’ options were presented to the participants and they were asked to mark the best option for them. The second author of this study administered the survey to the volunteering participants in 5–10 minutes. All participants gave informed consent prior to participating in the study. They were assured that all data would remain anonymous. No incentives were provided.

The mean percentages of the responses provided by Turkish participants for 17 items are shown in Table II. A close examination of the mean percentages for the parts of the questionnaire makes it clear that the responses are generally accurate when it comes to general knowledge on BI (68.3%, SD ¼ 16.6) and less accurate for the recovery process (45.5%, SD ¼ 22.6). Participants compiled true information on coma and unconsciousness (54.9%, SD ¼ 24.7) and memory deficits (50.3%, SD ¼ 24.7) at a moderate rate. Item-based analysis revealed that participants scored the highest true response for the first two items in general knowledge and the lowest true response for the 12th item in the recovery process. The percentages of the correct responses scored by American and British participants are also demonstrated in Table II. ‘Student t-test for two proportions’ was performed to determine whether Turkish participants demonstrated differences in response accuracy to questionnaire items when compared to those in Hux et al. [9] and Chapman and Hudson [10]. Accordingly, participants in Turkey were found to be different from the participants in the US in almost all items except items 1, 2 and 14. Meaningful differences also emerged between Turkish and British participants regarding the accuracy of their responses to four of the 17 items (1, 3, 5 and 6). It was noted by Chapman and Hudson [10] that the participants in their study and the ones in Hux et al. [9] held similar misconceptions about brain injury and its sequelae with significant differences in some of the items except for items 1, 4, 7, 8, 9, 12, 15 and 17.

Data analysis During the statistical analysis of the data, the percentages of true and false conceptions that participants held about brain injury were identified. Following the separate assessment of responses, ‘probably true’ replies were considered ‘true’ and ‘probably false’ responses were considered ‘false’, since there appeared to be no significant differences

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I. Mavis¸ & D. Aky|ld|z Table II. Percentage of participants who answered questionnaire items accurately in Turkey, the US and the UK.


General knowledge about BI 1. A head injury can cause brain damage even if the person is not knocked out 2. Whiplash injuries to the neck can cause brain damage even if there is no direct blow to the head. 3. Emotional problems after head injury are usually not related to brain damage. 4. Most people with brain damage look and act disabled. Knowledge about coma and unconsciousness 5. When people are knocked unconscious, most wake up shortly with no lasting effects. 6. Even after several weeks in a coma, when people wake up, most recognize and speak to others right away. 7. People in a coma are usually not aware of what is happening around them. Knowledge about memory deficits 8. After head injury, people can forget who they are and not recognize others, but be normal in every other way. 9. Sometimes a second below to the head can help a person remember things that were forgotten after a first blow to the head. 10. People with amnesia for events before the injury usually have trouble learning new things too. 11. After head injury, it is usually harder to learn new things than it is to remember things from before the injury. Knowledge about recovery 12. How quickly a person recovers depends mainly on how hard they work at recovering. 13. People who have had one head injury are more likely to have a second one. 14. A person who has recovered from a head injury is less able to withstand a second blow to the head. 15. Once a recovering person feels ‘back to normal’, the recovery process is complete. 16. It is good advice to rest and remain inactive during recovery. 17. Complete recovery from a severe head injury is not possible, no matter how badly the person wants to recover.

TR* (%) (n ¼ 253)

USA** (%) (n ¼ 318)

TR* (%) (n ¼ 253)

UK*** (%) (n ¼ 322)

(T)

96.40

98.74

>0.05

96.40

95.00

>0.05

(T)

92.10

90.25

>0.05

92.10

64.80