Indian Journal of Medical Sciences Medknow Publications on behalf of Indian Journal of Medical Sciences Trust ISSN: 0019-5359 EISSN: 1998-3654 Vol. 61, Num. 7, 2007, pp. 398-406

Indian Journal of Medical Sciences, Vol. 61, No. 7, July, 2007, pp. 398-406

Original Contributions

Impact of an education program on parental knowledge of specific learning disability

Karande Sunil, Mehta Vishal, Kulkarni Madhuri

Learning Disability Clinic, Division of Pediatric Neurology, Department of Pediatrics, Lokmanya Tilak Municipal Medical College and General Hospital, Sion, Mumbai
Correspondence Address:Department of Pediatrics, Lokmanya Tilak Municipal Medical College and General Hospital, Sion, Mumbai - 400 022 karandesunil@yahoo.com

Code Number: ms07066

Abstract

Keywords: Dyslexia, educational intervention, parental perceptions, students

′Specific learning disability′ (SpLD) is a generic term that refers to a heterogeneous group of neurobehavioral disorders manifested by significant unexpected, specific and persistent difficulties in the acquisition and use of efficient reading (′dyslexia′), writing (′dysgraphia′) or mathematical (′dyscalculia′) abilities despite conventional instruction, intact senses, normal intelligence, proper motivation and adequate sociocultural opportunity. ^[1],[2] SpLDs are intrinsic to the individual and are due to central nervous system dysfunction. ^[3] Recent genetic linkage studies have implicated loci on chromosomes 6 and 15 in dyslexia. ^[4],[5] The prevalence of dyslexia in school children in USA ranges between 5.3 and 11.8%. ^[6] Information about SpLD occurring in Indian children is scanty because of a general lack of awareness about this invisible handicap.

Children with SpLD fail to achieve school grades at a level that is commensurate with their intelligence. ^[1],[2] Repeated spelling mistakes, untidy or illegible handwriting with poor sequencing, inability to perform simple mathematical calculations correctly are the hallmarks of this lifelong condition. ^[1],[2] It is important to identify SpLD early, rather than when chronic poor school performance and its attendant emotional sequelae such as low self-esteem and behavioral problems ensue. ^[1],[2] Children with SpLD are often rejected by their peers and may fall into substance abuse addiction and become delinquents. ^[1],[2]

Currently, SpLD cannot be conclusively diagnosed until the child is about 8 years old. ^[1],[2] The cornerstone of treatment of SpLD is remedial education. Because of the central nervous system′s higher plasticity in early years, remedial education should be started as early as possible - when the child is in primary school, viz., before the age of 10 years - to achieve maximal benefit. ^{[1],[2],[7],[8]} The child needs to undergo remedial education sessions twice or thrice weekly for a few years to achieve academic competence. ^[7]

The management of SpLD in the more time-demanding setting of secondary school is based more on providing provisions (accommodations) rather than remediation. ^[1],[2],[7] Also, it is generally believed that since brain plasticity is limited after the age of 12 years, remedial education may not benefit the ′secondary school′-going child. ^{[1],[2],[7],[8]} These provisions are adjustments offered in the school curriculum - for example, exemption from spelling mistakes, availing extra time or a writer for all written tests, dropping a language or having lower grade of mathematics - and are meant to enable the child achieve academic performance commensurate with his/ her intellectual ability and continue education in a regular mainstream school. ^[1],[2]

In our city, awareness about SpLD has developed amongst school authorities only in the last few years. Children with academic underachievement or failure are referred to our clinic for diagnosing SpLD by the school principal with a referral letter describing the child′s academic difficulties. Generally, either the school principal or the classroom teacher or the school counselor has already discussed with the parent(s) the reason for the referral and given them some preliminary information about SpLD. Most schools do not employ special educators as staff members, and children with SpLD have to necessarily take remedial education from private special educators, outside their regular school hours.

Over the years during our interactions with parents, who accompany their children to our clinic for diagnosis and during follow up, we have formed a general opinion that they were not adequately knowledgeable about SpLD and its management. We have come across parents who (1) did not accept the diagnosis of SpLD, (2) had not begun remedial education but instead employed a regular teacher (having no training in remediation) to give private tuitions, (3) discontinued remedial education within a few weeks or months for lack of perceived benefit and (4) refused to avail provisions for their child as availing this option would have restricted future career options (e.g., at present in our educational system, a child who has opted for lower grade of mathematics cannot later opt for a career in engineering).

It is well known that a supportive home environment is one of the factors that can favorably determine the outcome of specific learning disability (SpLD) in a school-going child. ^[1],[2] The aims of the present study were (1) to determine the parents′ knowledge of their child′s SpLD and (2) to evaluate the impact of a single-session educational intervention on it.

Materials and Methods

Parent enrolment

This study was conducted from April 2002 to mid-November 2002. The parent sample was by necessity a convenience sample, and the first 50 parents (either mother or father) who were conversant in English and willing to follow up were included in the study. All parents were aware that their child had been referred to our clinic with a ′suspected′diagnosis of SpLD.

Consent and ethical approval

Our study was approved by the scientific and ethics committees of our institution. All parents had signed an informed consent form to participate in the study.

Diagnosis of SpLD

Each child was assessed by a multidisciplinary team comprising of pediatrician, counselor, clinical psychologist and special educator before the diagnosis of SpLD was confirmed. ^[1],[9],[10] Audiometric and ophthalmic examinations were done to rule out noncorrectable hearing and visual deficits, as children with these deficits do not qualify for a diagnosis of SpLD. The pediatrician took detailed clinical history and did a detailed neurological examination. The counselor ruled out the possibility that emotional problem due to stress at home was primarily responsible for the child′s academic underachievement. The clinical psychologist conducted the standard test, viz., Wechsler Intelligence Scale for Children - Revised (WISC) [Indian adaptation by MC Bhatt], to determine that the child′s level of intellectual functioning was average or above average (Global Intelligence Quotient score ≥85). ^[11] Children with borderline intellectual functioning and mild mental retardation (Global Intelligence Quotient scores < 85) did not qualify for a diagnosis of SpLD. ^[1],[9],[10]

Curriculum-based assessments is a recommended method of diagnosing SpLD. ^{[9],[10],[12]} Employing a locally developed curriculum-based test, the special educator conducted the educational assessment in specific areas of learning, viz., basic learning skills, reading comprehension, oral expression, listening comprehension, written expression, mathematical calculation and mathematical reasoning. This test is a criterion-referenced test based on the state education board curriculum.

Composition of questionnaire and educational program

Both the questionnaire and the educational program were composed by the authors and were critiqued for validity and clarity by two experts in research methods [Table - 1],[Table - 2]. The structured educational program included the appropriate responses to the questionnaire. The program was devised to educate the parents about the ′core basic issues′regarding SpLD [Table - 2]. The program aimed to make parents knowledgeable that their child′s poor school performance was due to a ′real′disability which has a neural and genetic basis. Secondly, it aimed to educate parents about not only the importance and meaning of remedial education but also its optimum frequency and duration and that it should necessarily be given by a special educator. Thirdly, it aimed to educate parents about the meaning of, and need for, provisions. Lastly, it aimed to make parents aware that SpLD is a lifelong disorder.

Parental comprehension of the content of the questionnaire was tested in a pilot study.

Initial interview

The initial interview was conducted using the questionnaire and was carried out by a single investigator (V.M.). It was conducted when the parent was visiting our clinic to receive the child′s SpLD certificate. The parent′s responses were noted down ′ad verbatim.′ The demographic data of the parents and children, viz., age, gender, educational status and socioeconomic status as per modified Kuppuswami′s classification, was noted. ^[13],[14] At the end of the interview, each parent was administered the educational program using ′flash cards′on which the appropriate responses to the questionnaire were displayed. The initial interview (15 to 20 min) and subsequent educational program (25 to 30 min) were generally conducted over a total period of 40 to 50 min.

Re-interview after education program

The parents served as their own controls and were interviewed 3 months apart, once before and once after the intervention, to eliminate the effects of prior knowledge on the study results. To ensure compliance, a telephone call was made by V.M. to each parent a few days before the post-intervention interview was due. The post-intervention interview was conducted by the same investigator (V.M.) over a period of 15 to 20 min.

Data analysis

The differences of parental responses to the questionnaire before and after the intervention were analyzed with the Chi-square (χ² ) test, using the Statistical Package for the Social Sciences program, version 11 for Windows (SPSS Ltd., Chicago, Illinois, USA). A two-tailed P value of < 0.05 was used to define statistical significance; and confidence intervals and odds ratios were calculated.

Results

Parental characteristics

All 50 parents followed up to answer the post-intervention questionnaire [Table - 3]. The ′mean age (years) ± SD′ of mothers was 38.7 ± 4.7, fathers was 43.1 ± 4.7 and all parents was 40.3 ± 5.1. The mothers: fathers ratio was 1.78:1. All parents were literate, and 66% were either graduates or postgraduates, but none were doctors. All parents belonged to either the middle or upper socioeconomic strata of society.

SpLD children characteristics

All 50 children were studying in English-medium schools situated in our city [Table - 4]. In 48 children, a diagnosis of all three types of SpLD (dyslexia, dysgraphia and dyscalculia) was made; while in the remaining 2 children, a diagnosis of dyslexia and dysgraphia was made. The boys: girls ratio was 3.17:1. Only 6 (12%) children were below 10 years of age. Before referral to our clinic, 23 (46%) children had already been detained to repeat a class standard due to failure in their annual school examinations [Table - 5]. Of these, 21 (42%) children had been detained once and 2 (4%) had been detained twice.

Impact of education program [Table - 5]

1. Definition of SpLD: After the intervention, all the parents could correctly explain the term ′SpLD,′ compared to 64% before the intervention; and this difference was statistically significant (P < 0.0001).
2. Cause of SpLD: Few (16%) parents were aware of the cause of SpLD before the intervention. Even the intervention failed to significantly improve the parents′ knowledge about the cause of SpLD (P = 0.147).
3. Recommended treatment for SpLD: Even before the intervention, the majority (66%) of parents answered that ′some type of special education′ was the treatment recommended for SpLD and that it was given by a ′specially trained teacher.′ Although they did not state the terms ′remedial education′ and ′special educator,′ we have acknowledged that they were aware that treatment of SpLD requires something more than the regular education and that a teacher with specialized training gives it; therefore, we marked their responses as being appropriate. After the intervention, there was a significantly increased awareness amongst the parents that remedial education was the recommended treatment for SpLD and that it needs to be given by a special educator (P = 0.004). Also before the intervention, nine (18%) parents answered that private tuitions taken from the regular classroom teacher is the treatment for SpLD; but after the intervention, only two (4%) parents persisted in giving this wrong answer.
4. Definition of remedial education: After the intervention, 92% parents could correctly explain the term ′remedial education,′ compared to 48% before the intervention; and this difference was statistically significant (P < 0.0001).
5. Frequency and duration of remedial education: Before the intervention, few (14%) parents were aware that a child with SpLD needs to undergo remedial education sessions twice or thrice weekly for a period of 1-3 years to achieve academic competence. Although 38% of the parents still remained unaware of the optimum frequency and duration of remedial education after the intervention, this was still a significant improvement as compared to the awareness level before the intervention (P < 0.0001).
6. Meaning and purpose of provisions: After the intervention, 98% parents could correctly explain the meaning and purpose of provisions, compared to 56% before the intervention; and this difference was statistically significant (P < 0.0001).
7. Awareness of SpLD as a lifelong disorder: Before the intervention, few (11%) parents were aware that SpLD is a lifelong disorder. After the intervention although 56% of the parents still remained unaware that even after adequate remedial education subtle deficiencies in reading, writing and mathematical abilities persist, this was still a significant improvement as compared to the awareness level before the intervention (P = 0.019).

Discussion

Although all the parents were literate (66% were highly educated) and economically well off, they lacked sufficient knowledge regarding the core basic issues of SpLD. It is important to note that before SpLD was suspected, 46% children had already repeated a class standard and 88% of children had already crossed the optimum age for effective remedial education. This indicates that not only parents but even school authorities in our city may be lacking sufficient knowledge regarding this invisible handicap. Our results indicate that the educational intervention significantly helped improve the parents′ knowledge of (1) the meaning of the term ′SpLD,′ (2) the fact that remedial education given by a special educator is the recommended treatment of SpLD, (3) the meaning of the term ′remedial education,′ (4) the fact that remedial sessions are necessary twice or thrice weekly for a period of 1-3 years to achieve academic competence, (5) the meaning and purpose of provisions and (6) the fact that SpLD is a lifelong disorder.

We believe that once parents are empowered with this core knowledge about SpLD right from the time of its diagnosis in their child, they would not only accept the diagnosis but also begin remedial education from a special educator without further delay and continue it for an adequate time period. Remedial education sessions are quite expensive in our city. (One session costs about Rs. 250). Parents once convinced that remedial education is the only recommended treatment for SpLD would also possibly not mind spending money on it. Parents would also not dissuade their child from availing provisions if their child′s academic deficiencies continue (as they often do) in spite of remedial education. ^[1],[2] Parental awareness of SpLD being a lifelong disorder would also empower them to guide their child select an appropriate career for adult life.

The educational intervention failed to improve parental knowledge with regard to the fact that dysfunction in their child′s brain causes SpLD and it has a strong genetic basis. We cannot explain the reasons for this, but it is possible that the concept of ′brain dysfunction′was too medical for parents to grasp and retain.

We cannot compare the present study with previous work because there isn′t any. A detailed Medline search did not find any study which has evaluated parents′knowledge about SpLD at the time of diagnosis and evaluated the impact of an educational intervention on it.

Our study has four limitations. First, some children with severe SpLD even with appropriate remedial education and provisions are still unable to cope up and need to continue their education in special schools. ^[1],[2] We intentionally did not address the issue of severity of SpLD as there are no well-established objective methods to measure severity and we did not want to include negative information in the educational program as we believed that such information could dishearten the parents. Second, we did not attempt to educate the parents about attention deficit hyperactivity disorder, which is a comorbid condition found in 12-24% of children with SpLD. ^[1],[2] We felt that including information about attention deficit hyperactivity disorder would make the educational program complicated. Third, because of lack of facilities and funds, the interviews could not be recorded with a tape recorder for later analysis by an unbiased investigator. Lastly, although we took care to eliminate the effects of prior knowledge on the study results, it is possible that after the educational intervention some parents might have on their own made efforts to get better informed about SpLD by reading articles or browsing the internet. Both ethically and practically, it would have been improper to disallow parents from getting better informed about SpLD. However, we would like to believe that our educational intervention could have inspired these parents to learn more about SpLD. We have no reason to believe that these limitations adversely affect the utility of our results. Both due to the limitations as outlined above and the general paucity of data, there is a need for further study of this topic in SpLD clinics situated all over the world.

To conclude, implementation of educational intervention will enable parents to help their children overcome this hidden disability and become well-adjusted individuals as they mature into adulthood.

Acknowledgments

References

Copyright 2007 - Indian Journal of Medical Sciences

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