Journal of Postgraduate Medicine Medknow Publications and Staff Society of Seth GS Medical College and KEM Hospital, Mumbai, India ISSN: 0022-3859 EISSN: 0972-2823 Vol. 55, Num. 2, 2009, pp. 97-103

Journal of Postgraduate Medicine, Vol. 55, No. 2, April-June, 2009, pp. 97-103

Original Article

Quality of life of parents of children with newly diagnosed specific learning disability

Karande S, Kulkarni S

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

Date of Submission: 16-Jan-2009
Date of Decision: 13-Mar-2009
Date of Acceptance: 12-Apr-2009

Code Number: jp09028

PMID: 19550053
DOI: 10.4103/0022-3859.52839

Abstract

Keywords: Dyslexia, educational status, health status, mothers, quality of life

Specific learning disability (SpLD) is a group of neurodevelopmental disorders which manifest in childhood as persistent difficulties in learning to efficiently read (dyslexia), write (dysgraphia), or do simple mathematical calculations (dyscalculia) despite normal intelligence, conventional schooling, intact hearing and vision, and adequate motivation and socio-cultural opportunity. ^[1],[2] Up to 5-15% of "seemingly normal" school children have this invisible handicap. ^[1],[2] These children fail to achieve school grades commensurate with their intellectual potential. ^[1],[2] Up to 20-25% of children with SpLD have associated attention-deficit/hyperactivity disorder (ADHD) which is characterized by persistent hyperactivity, impulsivity, and inattention; and this co-morbidity further impairs their learning. ^[1],[2] In our country, due to a generalized lack of awareness, SpLD often remains undetected resulting in the afflicted child experiencing chronic poor school performance and class detainment. ^[2],[3] Poor school performance not only results in the child having a low self-esteem, but also causes significant stress to the parents. ^[3]

Quality of life (QOL) is defined by the World Health Organization (WHO) as an individual′s perception of his/her position in life in the context of the culture and value systems in which he/she lives, and in relation to his/her goals, expectations, standards, and concerns. ^[4] It is a broad-ranging concept, incorporating in a complex way, the person′s physical health, psychological state, level of independence, social relationships, personal beliefs, and relationship to salient features of the environment. ^[4]

A detailed Medline search using the key words "quality of life" and "parents" and "dyslexia" failed to retrieve any study which has analyzed the QOL of parents having a child with SpLD. Keeping this in mind we conducted the present study whose objectives were to measure and analyze the QOL of parents having a child with newly diagnosed SpLD and to evaluate the impact of clinical and socio-demographic characteristics on their QOL.

Materials and Methods

Diagnosis of SpLD
All children had been referred to our clinic for assessment of poor school performance. Each child was assessed over a period of two to three weeks by a multidisciplinary team comprising of pediatrician, counselor, clinical psychologist, and special educator. ^[1],[2] Only children above seven years of age were included in the study as a conclusive diagnosis of SpLD cannot be made till then. ^[1],[2] Unlike children having SpLD, some children are "normal late developers" who by the age of seven years on their own outgrow their learning problems. ^[1],[2] Audiometric and ophthalmic examinations were done to rule out non-correctable hearing and visual deficits (of ≥40% disability) as children with these deficits do not qualify for a diagnosis of SpLD. ^[1],[2] The pediatrician took a detailed clinical history and did a detailed clinical examination. The socio-demographic characteristics of each child and parent were noted. The modified Kuppuswami′s classification was used to determine the family′s socioeconomic status. ^[5],[6] The counselor ruled out that emotional problem due to stress at home/school was not primarily responsible for the child′s poor school performance. The clinical psychologist conducted the Wechsler Intelligence Scale for Children-Revised [Indian adaptation by MC Bhatt] to determine that the child′s global intelligence quotient score was average or above average (≥85). ^[7]

Curriculum-based assessment is a recommended method of diagnosing SpLD. ^[1],[2],[8] Employing a locally developed curriculum-based test, the special educator conducted the educational assessment in specific areas of learning, namely, basic learning skills, reading comprehension, oral expression, listening comprehension, written expression, mathematical calculation, and mathematical reasoning. ^[1],[2] An academic achievement of two years below the child′s actual school grade placement or chronological age was considered diagnostic of SpLD. ^[1],[2] This test is a criterion-referenced test based on the Maharashtra education board curriculum followed in Mumbai schools. ^[2]

The diagnosis of co-occurring ADHD was made by the pediatrician and also confirmed by the psychiatrist. For diagnosing ADHD the standard recommended method was followed, namely, by ascertaining that the child′s specific behaviors met the diagnostic and statistical manual of mental disorders-IV-revised (DSM-IV-R) criteria. ^[9]

Sample size and parent enrolment
It was assumed that 10% of Indian children have SpLD. With a 95% confidence level and 5% confidence interval the sample size (namely, the number of parents that need to be interviewed) was calculated using the standard formula:

[ Z = 1.96 ( Z value for 95% confidence level); P = 0.1 (10% prevalence, expressed as decimal); C = 0.05 (confidence interval, expressed as decimal)]. The sample size calculated for the present study was 138 parents.

However, we included the first consecutive 150 parents (either mother or father) who could read and understand English and were willing to participate in the study. Thus, the power of analysis for the present study was> 95%. No parent who could read and understand English refused to participate in the study. Parents having another child who had been earlier diagnosed as having SpLD were excluded from the study. Each parent was given the ′international World Health Organization Quality of Life-100 instrument (WHOQOL-100)′ to complete in a quiet secluded room during his/her last visit to our clinic but before the child′s diagnosis was informed. ^[10] Parents completed this self-administered questionnaire in 25 to 30 min. ^[10] As recommended, each parent used a two-week recall period for scoring all 100 items (questions). ^[10] This study was conducted from June 2006 to February 2007. 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.

Measuring QOL of parents with WHOQOL-100
The WHOQOL-100 is a generic multidimensional QOL instrument which has been developed simultaneously across 15 international field centers, including two centers in New Delhi and Chennai (formerly, Madras) in India. ^[10],[11] It is designed for cross-cultural subjective assessment and it can be used in any country where people can read and understand English. ^{[10],[11],[12]} The universality of the WHOQOL-100 has been found to be remarkably adept at identifying facets of QOL which are cross-culturally important. ^[11],[12] It measures 100 items and it is possible to derive six domain (area) scores, 24 specific facet (feature) scores, and one facet score that measures "overall QOL and general health" [Table - 1]. Each facet is represented by four items with a 5-point Likert-type response scale. Scores for each of the domains and facets range from 0 to 100, with higher scores indicating better QOL. The WHOQOL-100 demonstrates good reliability and validity. ^[10] Internal reliabilities (as measured by Cronbach alpha) of the 6 domains ranges from 0.71 to 0.86; and of the 25 facets ranges from 0.67 to 0.93; demonstrating good internal consistency. The discriminant validity (as determined via t -tests by distinguishing differences between mean scores of ill and well subjects) of the six domains ranges from 5 to 18.5% ( P = 0.001); and of the 25 facets ranges from 2 to 19.3% ( P = 0.001). All six WHOQOL-100 domain scores make a significant contribution to explaining variance observed in the general facet relating to ′overall QOL and general health′. ^[10]

Data analyses
The data were analyzed using the Statistical Package for Social Sciences, Version 15 for Windows (SPSS; Chicago, IL, USA). First; the WHOQOL-100 mean scores (±SD) for the study parents were computed using the SPSS syntax file provided in the WHOQOL user manual. ^[10] Second; multiple regression analysis was used to identify the domains and facets (predictor variables) which made a significant contribution to explaining the observed variance in the "overall" facet (dependent variable). Third; the independent samples t -test or the one-way analysis of variance test was used, as applicable, to evaluate the impact of the clinical and socio-demographic variables on the scores of the significant WHOQOL-100 domains and facets. Fourth; multivariate regression analysis was performed for determining the "independent" impact that each of the clinical and socio-demographic (categorical) variables had on a poor QOL score of ≤60. The WHOQOL-100 pilot study had obtained a mean "overall" facet score of 60.3, which was used by us as a cut-off value for defining a poor QOL score. ^[10] Accordingly, each "significant" WHOQOL-100 domain and facet score were dichotomized into good QOL (score of> 60) or poor QOL (score of ≤60) and used as "dependent variables" in the models.
Wherever appropriate the odds ratio (OR) was calculated and 95% confidence intervals (CI) were estimated around the OR. P values < 0.05 (two-tailed) were taken as statistically significant.

Results

The mean scores (±SD) of WHOQOL-100 domain and facet scores of study parents are given in [Table - 1]. There was little missing data for the WHOQOL-100 items [Table - 1].

Analysis of WHOQOL-100 domain scores of study parents
As shown in [Table - 2], the model had an adjusted R ² score = 0.635; meaning that 63.5% of variance in the overall facet was explained by the six domains. Only four domain scores made a "significant" contribution to explaining variance observed in the "overall" facet score. Of these, three domain scores (psychological, social relationships, environment) made a "positive" contribution to the overall facet; namely, higher the psychological domain score, higher will be the "overall" facet score. The psychological domain contributed most highly (β = 0.492, P < 0.001), followed by the environment (β = 0.288, P < 0.001) and social relationships (β = 0.271, P < 0.001) domains. The spirituality domain score made a "negative" contribution to the overall facet (β = -0.165, P = 0.006); namely, higher the spiritual domain score lower will be the "overall" facet score.

Analysis of WHOQOL-100 facet scores of study parents
As shown in [Table - 3], 71.3% of variance in the overall facet was explained by the other 24 predictor facets; and only five WHOQOL-100 facets scores made a significant "positive" contribution to explaining variance observed in the "overall" facet. Of these, the "leisur facet (facet no. 21)" contributed most highly (β = 0.320, P < 0.001); followed by the "pfeel (no. 4)" (β = 0.262, P < 0.001), "energy (no. 2)" (β = 0.226, P = 0.001), "esteem (no. 6)" (β = 0.209, P = 0.009), and "sex (no. 15)" (β = 0.159, P = 0.016) facets.

Demographic variables
The mean age of parents was 42.6 years (SD 5.5, range 30.12 to 66.03). The mothers to father′s ratio was 1.3:1. Of the 150 parents: 142 were currently married and living with spouse, three had separated, two had divorced, and three were widowed. Nineteen (12.7%) parents stated that they were "currently ill". The causes mentioned were hypertension (by four); severe backache (three); ischemic heart disease, diabetes (two, each); rheumatoid arthritis, bronchial asthma, obesity-related muscular pains, viral fever, severe anxiety, migraine, thyroid-related problems, chronic poor sleep (one, each). The mean age of SpLD children was 12.2 years (SD 2.4, range 7.06 to 17.02). The boy to girl′s ratio was 1.9:1. Other details of clinical and socio-demographic characteristics are given in [Table - 4]. One mother did not disclose information about current health status and one father did not disclose about work status.

Impact of demographic variables on "significant" WHOQOL-100 domain scores
Parental age ≤40 years, being educated up to class standard X, and parent being currently ill were significantly associated with a "lower" psychological domain score (F = 3.274, df = 2, 147, P = 0.041; mean difference: -6.3, df = 148, 95% CI: -10.2 to -2.4, P = 0.002; and mean difference: 7.0, df = 147, 95% CI: 1.5 to 12.5, P = 0.013, respectively) [Table - 4]. Being educated up to class standard X, not belonging to the upper socioeconomic strata of society, and child being ≤12 years were significantly associated with a "lower" environment domain score (mean difference: -7.1, df = 148, 95% CI: -10.8 to -3.4, P < 0.001; F = 3.131, df = 2, 147, P = 0.047; and mean difference: -3.9, df = 148, 95% CI: -7.5 to -0.3, P = 0.035, respectively). Parent being currently ill was significantly associated with a "lower" social relationships domain score (mean difference: 8.2, df = 147, 95% CI: 2.2 to 14.2, P = 0.009). Being educated up to a university diploma or degree level, working and earning an income, and belonging to the upper socioeconomic strata of society were significantly associated with a "higher" spiritual domain score (mean difference: 8.7, df = 148, 95% CI: 4.0 to13.4, P < 0.001; mean difference: 5.7, df = 147, 95% CI: 1.1 to 10.3, P = 0.017; and F = 3.131, df = 2, 147, P = 0.047, respectively).

Multivariate analysis revealed that only parent gender being female "independently" predicted a "poor" psychological domain score of ≤60 ( P = 0.009, OR = 0.3, 95% CI 0.1 to 0.7); and parent gender being female, and parent being currently ill "independently" predicted a "poor" social relationships domain score of ≤60 ( P = 0.010, OR = 0.2, 95% CI 0.1 to 0.7; and P = 0.004, OR = 0.1, 95% CI 0.04 to 0.5, respectively).

Impact of demographic variables on "significant" WHOQOL-100 facet scores
Parent being currently ill was significantly associated with a "lower" energy facet score (mean difference: 9.5, df = 147, 95% CI: 1.3 to 17.7, P = 0.024) [Table - 5]. Parent gender being female was significantly associated with a "lower" pfeel facet score (mean difference: 5.3, df = 148, 95% CI: 0.8 to 9.8, P = 0.022). Parent gender being female, and child having first-born status were significantly associated with a "lower" esteem facet score (mean difference: 6.1, df = 148, 95% CI: 0.7 to 11.5, P = 0.027; and, mean difference: -5.9, df = 148, 95% CI: -11.3 to -0.5, P = 0.032, respectively). Parent working and earning an income was significantly associated with a "lower" leisur facet score (mean difference: 5.2, df = 147, 95% CI: 0.2 to 10.2, P = 0.041).

Multivariate analysis revealed that parent gender being female, parent being currently ill, and, child gender being female "independently" predicted a "poor" energy facet score of ≤60 ( P = 0.010, OR = 0.3, 95% CI: 0.2 to 0.8; P = 0.028, OR = 0.3, 95% CI: 0.1 to 0.9; and, P = 0.048, OR = 2.2, 95% CI: 1.0 to 4.9, respectively); parent gender being female "independently" predicted a "poor" pfeel facet score of ≤60 ( P = 0.004, OR = 0.3, 95% CI: 0.1 to 0.7); and parent being currently ill, and parent working and earning an income "independently" predicted a "poor" leisur facet score of ≤60 ( P = 0.028, OR = 0.2, 95% CI: 0.1 to 0.9; and, P = 0.020, OR = 0.4, 95% CI: 0.2 to 0.9, respectively).

Discussion

Our study shows that parents of children with newly diagnosed SpLD regard four domains (psychological > environment > social relationships > spiritual) as significant contributors to their overall QOL. The spiritual domain is the least contributory and that too in a negative way. Multivariate analysis revealed that being a mother is an independent predictor of "poor" psychological and social relationships domain scores; and being currently ill is an independent predictor of a "poor" social relationships domain score. Our study also shows that these parents regard five facets (leisur > pfeel > energy > esteem > sex) as important contributors to their overall QOL. Multivariate analysis revealed that being currently ill is an independent predictor of "poor" leisur and energy facet scores; being in paid work is another independent predictor of a "poor" leisur facet score; being a mother is an independent predictor of "poor" pfeel and energy facet scores; and child being male is an independent predictor of "poor" energy facet score.

To the best of our knowledge, ours is probably the first study that has addressed the QOL of parents having a child with SpLD and that too utilizing a detailed instrument, namely, the WHOQOL-100. Hence, we cannot compare our results with any previous work.

What is the utility of the present study? First; it is well known that parents of children with SpLD experience a lot of stress and impaired mental health. ^[3] The present study has identified the significant clinical and socio-demographic variables which impact the quality of life of these parents and which need to be addressed by counselors right at the time SpLD is diagnosed in their child. For example, our results indicate that mothers in particular have significantly poor psychological health and social relationships; and parents who are currently ill, irrespective of their gender, have significantly poor social relationships. Keeping this in mind counselors should spend more time and have follow up visits especially for all mothers in general and for parents who are ill. Our study has also identified that parents who are working or currently ill get significantly less opportunities for recreation and leisure activities. Counselors should therefore advice such parents to make efforts to keep time aside each week for such activities. Our study results indicate that mothers experience significantly less feelings of contentment and have a negative view of the future, and have less energy, enthusiasm, and endurance to perform the necessary tasks of daily living. Also, parents who are currently ill and parents having a male child with SpLD have less energy, enthusiasm, and endurance to perform the necessary tasks of daily living. Apart from counseling sessions, such mothers/parents may benefit by doing regular ′yoga′ exercises or other relaxation techniques. New research should be conducted to measure the effectiveness of these strategies. Improving the QOL of parents would eventually improve the home environment and help rehabilitation of children with SpLD. ^[1],[2] Second; in general, there is also very little information available in world literature on QOL of parents of children having other neurodevelopmental disorders such as pervasive development disorder, cerebral palsy, or mental retardation. ^[13] We believe that our study results are an important contribution to help reduce this deficit.

The present study has its limitations. First; we could not compare our study scores with any normative data as there are no population norms available for QOL of Indian parents. Second; after the parent had completed the WHOQOL-100 instrument we did not personally interview him/her to collect any further detailed information and this could have biased some of our results. ^[14] Third; as vernacular (Marathi or Gujarati) versions of the WHOQOL-100 instrument are not available, non-English-speaking parents were excluded from the study. However, our numbers of these parents were very small (less than five). Fourth; parents from the lower socio-economic strata of society were not represented in our study population. Either their children′s school authorities were not aware about SpLD or their parents were not motivated enough to bring their child to our clinic for assessment. Fifth; we did not attempt to reassess the QOL of these parents after initiation of psycho-educational interventions in their child. Many parents in our city cannot afford remedial education services; also it takes at least a year for remedial education to start showing improvement in child′s school performance; and many schools in our city just do not offer the necessary provisions (accommodations) even after the diagnosis of SpLD is confirmed. ^[2] However, we do not 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 clinics situated all over the world.

Acknowledgments

References

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