Awareness of Aphasia and Aphasia Services in South India: Public Health Implications

Abstract: 

Aphasia is an acquired language disorder resulting from brain damage. People who have aphasia need rehabilitation to maximize functional recovery. Assessing public awareness of aphasia is critical for development of aphasia-related services and access to them. The current study addresses levels of public awareness of aphasia and access to aphasia-related services in an urban area of the State of Kerala, India, a region with potentially high incidence and prevalence of aphasia. Results of an aphasia-awareness survey of 114 urban Kerala residents suggest poor public awareness of aphasia in the population. Less than 10 percent of those surveyed met criteria for having basic knowledge of aphasia. Semi-structured interviews of two Kerala-based neurologists support the findings of the survey and further suggest that aphasia-related services in the region may be limited. Findings hold implications for development of aphasia services and improvement of the psychosocial life of people who have aphasia.

Table of Contents: 

    Introduction

    Aphasia is an acquired disorder of language that is caused by damage to the regions of the brain in the cerebral left hemisphere that are responsible for language production and comprehension. The most common cause of aphasia is stroke, and approximately 25 to 40 percent of strokes result in aphasia (National Aphasia Association, 2012). Aphasia can also result from head injury, brain tumor, or other neurological disorders. Aphasia is most common among adults, especially older adults who are at greater risk of stroke than are relatively younger adults. For most people who have aphasia, a complete recovery is unlikely, but rehabilitation services are essential and effective in restoring everyday communicative functionality (Chapey, 2008; Salter, Teasell, Bhogal, Zettler & Foley, 2012). One may assume that aphasia rehabilitation services may be more readily accessed when levels of public awareness of aphasia are high and when aphasia rehabilitation services are available; access to services for health disorders may depend on a sufficient level of public awareness of the disorder (Das & Banerjee, 2008).

    The current study addresses: (1) public awareness of aphasia in an urban area of the southern Indian state of Kerala; and (2) the services and support structures available for individuals from Kerala who have aphasia. This research contributes to a recent worldwide effort to assess public awareness of aphasia, motivated by a desire to improve public access to needed aphasia rehabilitation services (Simmons-Mackie, Code, Armstrong, Stiegler & Elman, 2002). The ultimate motivation behind this research is to improve aphasia-related services in Kerala. The first step toward building awareness of aphasia is to assess the current level of understanding. In this study, levels of public awareness of aphasia were assessed using a public survey, as well as interviews of local clinicians.

    Awareness and Knowledge of Aphasia

    Kerala ranks first in India in literacy and health services (Institute of Applied Manpower Research, 2011). One would thus expect Kerala residents to be exposed to news, publications and other printed materials, including those related to health care. For this reason, one might also expect relatively high awareness of aphasia among members of this population, and established health services for people who have aphasia, as compared to other areas of India. At minimum, one would expect aphasia awareness in Kerala to be at least as good as that of other areas of the world with high rates of literacy and quality health services. In Exeter, Great Britain, and Sydney, Australia, for instance, levels of public awareness of aphasia and knowledge of range from 3 percent to 8 percent (Simmons-Mackie et al., 2002).

    Estimated Prevalence of Aphasia in Kerala

    The estimated population of Kerala in 2011 was 33,387,677 (Directorate of Census Operations in Kerala, 2011). Das and Banerjee (2008) report that between 1993 and 1995, there was a prevalence rate of 165 per 100,000 stroke survivors. If one conservatively assumes that as many as 40 percent of stroke survivors will also have aphasia (National Aphasia Association, 2012), then an estimated 22,000 people may be living with aphasia in Kerala. The average life expectancy of Kerala residents is 74 years (Institute of Applied Manpower Research, 2011). This high life expectancy rate is comparable to that of other developed countries around the world (Institute of Applied Manpower Research, 2011). Aphasia is most common among the older population. The relatively advanced age of Kerala residents may be another factor contributing to potentially high numbers of people with aphasia who live in Kerala.

    Lack of Awareness of Aphasia

    Lack of awareness of a disease or disorder may affect general access to services for that disorder. For example, Das and Banerjee (2008) demonstrate that a lack of awareness of warning symptoms of stroke is associated with a delay in receiving medical care from local doctors and a delay in hospitalization, thus negatively impacting patient access to proper treatment. Likewise, lack of awareness of aphasia and its symptoms may hinder access to aphasia services for the people who need them.

    Aphasia Services in India

    There are several institutions outside of Kerala that provide medical services for people affected with aphasia. The National Institute of Mental Health and Neuro Sciences (NIMHANS) is a multidisciplinary institute in Bangalore that offers rehabilitative services for patients with aphasia (National Institute of Mental Health and Neuro Sciences, 2012). The Sanjay Speech, Hearing and Rehabilitation Center is a private clinic that offers aphasia rehabilitative services in Bangalore, India (Kumar, 2012). Aphasia services are also available in other major urban areas. The current study was designed to explore whether aphasia services are available in urban areas of the state of Kerala.

    Questions

    Motivated by the desire to develop aphasia rehabilitative services in Kerala, the current study addressed the following questions:

    1. What are the levels of public awareness of aphasia in the urban areas of the state of Kerala, India?
    2. What are perspectives of physicians in urban Kerala on the following topics:
    • public awareness of aphasia in Kerala;
    • the role of clinicians in treating people from Kerala who have aphasia; and
    • services available to people from Kerala who have aphasia.

    Methods

    Awareness of Aphasia Survey

    Public awareness of aphasia was assessed using a survey tool, by permission of the designer of the survey, Dr. Christopher Code. The survey used was one designed specifically to assess public awareness of aphasia, and has been used at multiple locations worldwide (Simmons-Mackie et al., 2002). To date, this survey has been conducted in multiple locations in North America, Europe, and Australia, although the survey has not yet been conducted in India. Of 978 individuals surveyed to date worldwide, 133 (13.6 percent) said that they had heard of aphasia, but only 53 (5.4 percent) met the criteria for having “basic knowledge of aphasia” (Simmons-Mackie et al., 2002).  For the current Kerala-based administration of this survey, the survey questions were translated into Malayalam, which is the native language of Kerala. Institutional Review Board approval was obtained prior to conducting the study and the approved method was followed in data collection. Surveyors were fluent speakers of Malayalam pursuing degrees in speech and hearing sciences, one of whom is the author of this study (Chazhikat).

    Survey Procedure

    A convenience sample of participants was gathered in a local busy shopping complex in the town of Kottayam, a highly populated urban area in Kerala that has many offices, shopping centers, and tourist attractions. Following the survey procedure of Simmons-Mackie et al. (2002), surveyors asked potential respondents if they would answer a few questions, then asked basic demographic information including age, gender, and occupation. Participants were then asked if they had ever heard of aphasia. From those participants who answered positively, knowledge of aphasia was tested by asking them to define aphasia. Diverging slightly from the procedure used by Simmons-Mackie et al. (2002), all participants (as opposed to only those who had heard of aphasia) were asked to identify characteristics associated with aphasia by choosing “yes” or “no” or “not sure” from a list of characteristics such as “problem with speech,” “intelligence problem,” or “communication problem.” They were also asked what causes aphasia and where they had heard of aphasia (See Appendix A).

    Semi-structured Ethnographic Interviews of Clinicians

    A semi-structured interview of two Kerala-based neurologists was used to assess the level of public awareness of aphasia in South India, medical practice with patients in Kerala who have aphasia, and diagnosis and treatment of aphasia (See Appendix B). Interviews were conducted face-to-face within a semi-structured interview format that allows new questions to be addressed while targeting all the topics on which concentration was needed.

    The two physicians who were interviewed were selected because they provide care to patients affected with neurological disorders and have experience serving patients who have aphasia. The clinicians were identified through a Member of the Legislative Assembly (MLA) for the state of Kerala. This person was chosen as the referral source for this study because he possessed the most complete knowledge of the variety of health care services and health care providers in the state of Kerala. The research team phoned and e-mailed the MLA to provide him with an information sheet about the study to give to potential participants.

    The MLA anonymously contacted potential participants and provided them with an information sheet that contained basic information about the study. Potential participants who were interested to learn more about the study then directly contacted the author to indicate their interest in study participation. Once this contact was made, the potential participant was provided with written Informed Consent and the opportunity to ask questions about the study.

    Interviews were carried out at the physicians’ respective offices in person, and interview data were collected using handwritten notes that were typed and expanded from memory immediately after the interview.

    Data Analysis

    Analyses related to Question 1 on public awareness of aphasia

    Distributions of age, gender, and occupation of the survey participants were tallied. The number of people who had heard or not heard of aphasia was also tallied. Of those who had heard of aphasia, the number of those who had “basic knowledge” of aphasia was tallied; participants were classified as having basic knowledge of aphasia if their responses met the criteria of having chosen “speech,” “language,” and/or “communication problem” and if they also identified the cause of aphasia to be brain damage and/or stroke. Data were compared between the responses of those who were aware of aphasia and those who were not. Survey responses of participants from different occupational categories (those requiring an advanced degree versus those not requiring an advanced degree) were compared.

    As an additional index of public awareness of aphasia in Kerala, the physician interviewees were asked their general opinion about levels of aphasia awareness in that geographic region. Their responses to these questions were summarized qualitatively.

    Analyses Related to Questions 2 and 3

    The content of interview participants’ responses was organized by themes related to clinicians’ roles in treating aphasia and the availability of aphasia-related services in Kerala.

    Results

    Survey Results

    Survey respondents consisted of a convenience sample of 114 adults. Fifty-eight (50.8 percent) males and fifty-six (49.1 percent) females were surveyed. The age of respondents ranged from 27 to 62 years, with an average age of 47 years and a standard deviation of 7.5 years. Of the 114 respondents, 69 (60.5 percent) were in professions which do not require higher education and 45 (39.4 percent) were in professions which typically require higher education. Thirteen participants (11.4 percent) said they had heard of aphasia. Of those, only 10 (8.7 percent) had “basic knowledge of aphasia,” following the conventions of Code and colleagues (Simmons-Mackie et al., 2002). Participants had basic knowledge of aphasia if all four conditions below were met: (1) Response of ‘yes’ to each of four questions (“Is aphasia associated with speech problems? Language problems? Communication problems?” (2) Response of  ‘yes’ to the question, “Is aphasia caused by brain damage?”; (3) Response of  ‘no’ to the question “Are psychological problems and problems with intelligence symptoms of aphasia?”; (4) Response of ‘no’ to “Are emotional problems, impaired intelligence, and mental problems causes of aphasia?”

    Table 1 shows high awareness of stroke in this sample, as compared to the lack of awareness of aphasia in this sample. This was an important finding during this study. Almost all the participants had heard of stroke and 105 participants answered correctly what stroke was. This shows that there is an awareness and well-informed understanding of stroke among this population. Despite high levels of awareness of stroke, however, levels of awareness of aphasia were relatively low.

    Table 2 shows the responses of the participants to the various questions concerning aphasia. A majority of the participants responded that aphasia is not caused by emotional problems or mental problems. Quite a few of the participants responded with “Don’t know” for many of the questions as well, which is predictable, given the fact that most had stated that they had not previously heard of aphasia.

    Table 3 shows comparisons of basic knowledge of aphasia across the occupational categories of the participants. Results show that a small proportion of the participants who held occupations that required advance degrees (nurses, engineers, and teachers) had basic knowledge of aphasia. However, none of the respondents in careers associated with lower educational level had basic knowledge of aphasia.

    Interview Results

    Clinician A received his medical training in Kottayam, India; Jabalpur, India; and Lucknow, India; and completed his residency in Kottayam. He has worked in Kottayam and has been practicing for seven and one-half years, specializing in the field of neurology. Clinician B received his medical training in Pondicherry, India, and completed his residency in Thiruvananthapuram, India. He has worked in Kottayam in the Medical College.

    Clinician A sees patients who come from a middle class socio-economic group, mainly consisting of Hindu and Christian patients. He reports that he sees about 2-3 patients with aphasia a week, and that the aphasia severity level of these patients ranges from mild to severe.  The general patients and their families are often not aware of aphasia. Clinician B works with patients who come from a lower socio-economic group. His patients come from varying religious backgrounds including Hindu, Christian and Muslim. Their education levels range from those with no formal education to those who have attained a college education. He sees on average two to three patients with aphasia per month and sees cases of aphasia that are mild to severe.

    The clinicians reported that there was an evident lack of awareness of aphasia, even among the patients who have had a stroke and have acquired aphasia. Both interviewees reported that there were no assessments or interventions for aphasia in the facilities where they work. Both clinicians believe there are no cultural barriers, such as religious customs or beliefs that prevent patients from seeking care. Although both clinicians expressed that it may be difficult to change this lack of awareness, they stated that it can be done with proper planning. This might be accomplished by encouraging medical professionals to engage in public education about aphasia through printed materials and the media.

    Discussion

    Both the public survey results and the results of the semi-structured interviews are consistent in their suggestion that there is limited awareness and understanding of the nature of aphasia among the population of Kerala. However, one would expect that a socio-political region like Kerala that boasts a high literacy rate and relatively high levels of general education would be a prime location for development of public knowledge of aphasia and improved access to services. This would suggest that perhaps the general public is not being informed by medical professionals and other resources about aphasia.

    The overall proportions of survey participants who have heard of aphasia, and proportions of those who possess basic knowledge of aphasia, are comparable to those found in other regions of the world. Thus, Kerala may not be unique with respect to other world regions in its generally poor levels of public awareness of aphasia.

    In Kerala, the survey respondents who had “basic knowledge” of aphasia worked in hospital or school settings, and had more knowledge of aphasia than respondents who worked in private, non-medical, or non-educational settings. This might also be the case in other parts of the world. Populations that are not in health care settings may not have exposure to aphasia and may lack awareness of it.

    Findings from the interviews with the neurologists suggest that aphasia-related services in the region may be limited within the urban area of Kerala where they practice. This may be due to the poor awareness of the public about aphasia. Since the population lacks awareness of this issue, people will lack any tendency to seek care or treatment for aphasia or aphasia related symptoms. Given the relatively high life expectancy in Kerala, public education about aphasia and the development of additional aphasia intervention services would be particularly advantageous, since stroke-induced aphasia is typically associated with older patients. Clearly, intervention approaches for people who have aphasia abound (Chapey, 2008). A two-pronged approach to development of aphasia services would increase public awareness of the nature of aphasia, and also public awareness of the life benefits of aphasia intervention services and access to them. Models of aphasia advocacy efforts in Britain and the United States (Connect, 2012; Speakability, 2012) may be applicable in Kerala. Adapting the ideas and programs that these organizations provide for the public may serve as models of how to improve awareness of aphasia in Kerala and elsewhere.

    Global collaboration among aphasiologists and advocates for people who have aphasia will be essential to building an understanding of the demographic, historical, and socio-cultural factors that will ultimately improve public awareness of aphasia and expand access to services and support at the local level for people who have aphasia. In these efforts, advocates for people who have aphasia may be inspired by Cole (1997) who states, “What models should be used for determining optimum health and life expectancy? Well, in my scientific Utopia, health objectives would be species specific rather than race specific. The only race for which health objectives would be established would be the human race” (p. x).

    References

    • Chapey, R. (2008). Language intervention strategies in aphasia and related neurogenic communication disorders (4th Ed.). Philadelphia: Lippincott Williams & Wilkins.
    • Cole, L. (1997). Keynote address: The need for mad scientists. In National Institute on Deafness and Other Communication Disorders (Ed.), Proceedings of conference on communication disorders and stroke in African-American and other cultural groups: Multidisciplinary perspectives and research needs (NIDCD Monograph, volume 4; conference May, 1997) (pp. vii-x). Bethesda, MD: National Institutes of Health.
    • Connect (2012). About Connect. Retrieved from http://www.ukconnect.org/index.aspx
    • Das, S., & Banerjee, T. (2008). Stroke: Indian scenario, Journal of American Heart Association, Circulation, 118:2719-2724.
    • Directorate of Census Operations in Kerala (2011). Kerala Population Census 2011. [ONLINE] Retrieved from http://www.census2011.co.in/census/state/kerala.html.
    • Institute of Applied Manpower Research (2011). India Human Development Report 2011. Retrieved from http://http://www.pratirodh.com/pdf/human_development_report2011.pdf
    • Kumar, S. (2012). Sanjay Speech Hearing and Rehabilitation Center website. Retrieved from: http://www.speechtherapyindia.in
    • National Aphasia Association website (2012). More aphasia facts. Retrieved from http://www.aphasia.org/Aphasiapercent20Facts/aphasiapercent5Ffacts.html
    • National Institute of Mental Health and Neuro Sciences (2012). The Genesis. Retrieved from: http://www.nimhans.kar.nic.in/aboutnimhans.htm
    • Salter, K., Teasell, R., Bhogal, S., Zettler, L., & Foley, N., (2011). Evidence-based review of stroke rehabilitation. Retrieved from http://www.ebrsr.com/uploads/Executive-summary-SREBR-14.pdf
    • Simmons-Mackie, N., Code, C., Armstrong, E., Stiegler, L., & Elman, R. (2002). What is aphasia? Results of an international survey. Aphasiology, 16, 837-848.
    • SpeakAbility Inc (2012). About SpeakAbility. [ONLINE] Retrieved from http://speakability.biz/about.php

    Appendix A: Awareness of Aphasia Survey

    (Do not use without permission from Chris Code c.f.s.code@exeter.ac.uk)

    Interviewer, try to sample an age range, a socio-economic range and a (50/50) gender mix.

    Name of Interviewer ________________________________

    1. Date of Survey______      Place of Survey__________      Time of Day__________

    English Speaker_____?      Non-English Speaker________?

    Rate how busy the shopping centre/mall is on the occasion of data collection:

    Very busy___      Pretty busy___      Fairly Quiet___      Very Quite___

    2. Age_____      Gender______

    Occupation_____________

            (For occupation provide detail on nonspecific responses like ‘Salesman’,

            ‘Manager’, ‘Foreman’)

            Whereabouts do you work?___________________________________________

            If retired previous occupation_______________________________

            If unemployed previous occupation__________________________

    3. Have you ever heard of aphasia or dysphasia?

            Yes____      No____      (If YES go to box 4)

            If NO, have you ever heard of stroke?

            Yes____      No____

            If YES “can you tell me what a stroke is”?

            ________________________________________________________

            If NO, have you ever known anyone who had communication or speech problems

            following a stroke, brain surgery or head injury?

            Yes____      No____      (If NO go to box 8 & End Interview & give information on aphasia)

    4. If YES, “so you have heard of aphasia/dysphasia  What is aphasia/dysphasia?” Can it be:

    Speech problems?

      Yes

     No

     Don’t Know

    Problems using language?

      Yes

     No

     Don’t Know

    Problems understanding the speech of others?

      Yes

     No

     Don’t Know

    Problems with intelligence?

      Yes

     No

     Don’t Know

    Psychological problems?

      Yes

     No

     Don’t Know

    Reading problems?

      Yes

     No

     Don’t Know

    Writing problems?

      Yes

     No

     Don’t Know

    Communication problems?

      Yes

     No

     Don’t Know


    5. What causes aphasia/dysphasia?

    Brain damage

    Yes

     No

    Don’t Know

    Emotional problems

    Yes

     No

    Don’t Know

    ‘Mental’ problems

    Yes

     No

    Don’t Know


    6. In what context have you heard of aphasia/dysphasia, how have you heard about aphasia, where about aphasia?
            a) Relative/friend has/had aphasia___

            b) On TV/Radio___

            c) Newspapers/Magazine___

            d) Through my work___

                -specify how your work brings you in contact with aphasia

            _____________________________________________

            _____________________________________________

            e) Other___  (specify/give details)

            ______________________________________________

    7. If you have heard about aphasia, can anything be done to help the person with aphasia?

            Yes___      No___

            If YES, what can be done?

          ______________________________________________

    8. Have you ever heard of Action for Dysphasic Adults (ADA)?

            Yes___      No___

            Have you ever heard of the Stroke Association?

            Yes___      No___

    Survey instrument used with permission of Dr. Christopher Code, Chris Code c.f.s.code@exeter.ac.uk

    Appendix B: Semi-Structured Interview Questions (Core Questions)

    Personal Information and Education / Career Background:
    • Tell me about your education and training.
    • Tell me about your work locations.
    Medical Practice with patients with aphasia:
    • Could you describe the socio-economic background of the patients you see?
    • Before your medical training/experience had you been familiar with aphasia?
    • Tell me the nature of your contacts with people who have aphasia.
    • On average how many people with aphasia do you see?
    • What is the severity of the cases of aphasic patients you see?
    • What are the backgrounds of the patients with aphasia that you see (education, age, gender, occupation, etc.)
    Diagnosis and Treatment of Aphasia:
    • To your knowledge, what types of assessments or interventions are typically done for patients with aphasia in South India?
    • Could you explain to me what therapeutic resources, clinics, hospitals are there that provide aphasia treatments in South India?
    • Could you describe the role of doctors and clinicians with patients who have aphasia?
    • What assessment tools and methods for aphasia are you aware of?
    Public awareness of aphasia and aphasia resources in South India
    • Tell me your perception of the public’s awareness of aphasia in South India.
    • Is there a lack of awareness of aphasia?
    • Do you perceive that there are any family/ cultural barriers that prevent people with aphasia from seeking treatment?

    Table 1: Participants’ Responses on Aphasia and Stroke Content in Survey

      Response demonstrates understanding of survey content?
    Survey content item Yes No
    Heard of aphasia? 13 101
    Heard of stroke? 113 1
    Answered correctly what stroke is? 105 9

    Table 2: Survey Responses to Questions Concerning Aphasia

      Response of survey participants
    Survey question Yes No Don't know
    What is aphasia/dysphasia? Can it be:
    Speech problems? 23 58 33
    Problems using language? 23 38 53
    Problems understanding the speech of others? 22 49 43
    Problems with intelligence? 3 60 51
    Psychological problems? 3 64 47
    Reading problems? 5 68 41
    Writing problems? 2 70 42
    Communication problems? 13 55 46
    What causes aphasia?
    Brain damage 37 77 0
    Emotional problems 0 80 34
    ‘Mental’ problems 0 100 14

    Table 3: Basic Knowledge of Aphasia in Relation to Occupation

      Basic knowledge of aphasia Basic knowledge of aphasia
    Yes No
    All occupations 10 104
    Degreed
    Nurse 6 11
    Engineer 1 6
    Teacher 3 18
    Non-degreed (e.g. farmer, housewife) 0

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