A study on the prevalence of perceived stress and coping strategies in parents of intellectually disabled children

 

 

Abstract               Background: Children with intellectual disabilities are common and are increasing in number as more children survive globally. Raising a child with intellectual disability (ID) can add to parenting stress significantly. High perceived stress levels and lack of effective coping skills could be a barrier to achieve the challenges of parenting process. Objective: To study the perceived stress, mediators of stress or coping strategies in parents of intellectually disabled children and correlation between perceived stress in parents having children with intellectual disability and behavioral problems in comparison with intellectual disability alone. Design: This was a Descriptive Cross Sectional study. Duration: Setting: Participants: 50 parents of children with intellectual disability, attending the Psychiatry Out Patient Department of for disability certification Methods: The children were initially assessed. IQ test was conducted for each child; subsequent to it children were assessed for behavioral problems. A semi structured proforma was used to collect the socio demographic data of the subjects, after which they were assessed with Modified Kuppuswamy Scale to measure the socioeconomic status followed by the family interview for stress and coping in mental retardation (FISC-MR). Analysis of data was conducted using the SPSS 19.0 software. Correlations were carried out with Pearson's rank correlation coefficient. Two tailed P values ≤0.05 was considered as statistically significant. Results: Most of the attending parents were females. Majority of the parents had more than high school education and were from upper lower class and middle class. Living with and caring for persons with Mental Retardation(MR) is very stressful and burdensome. In this study, it was maximum in caregivers of persons with severe to profound intellectual disability. The perceived stress score 33 was maximum which indicates high score, but the mean score was around 12 which indicates mild level of perceived stress over all. The mean total BPI score was 15. Behavioral problems in the child led to high levels of stress and poor adaptation strategies in parents. Perceived stress was not affected by parents' education and economic status but directly proportional to mechanisms involved in coping. However higher education of parents and high income groups have significantly better coping strategies. Conclusion: Increased level of disability is associated with high level of stress and burden, it being the maximum in the care givers of persons with severe to profound MR. The study highlights the need for psychological assessment in caregivers and to create the awareness and dispense adequate information to parents.

Key Words: Intellectually Disabled Children, Psychological Distress, Parent, Prevalence, Coping.

 

INTRODUCTION

Intellectual disability in a child provokes a period of disequilibrium in the parents, followed eventually by an adjustment to life with or without undue stress. There are various stress which emerge and re-emerge over time. A discrepancy between expectations and the performance of the developmentally disabled child continues bringing feelings of grief¹. Poor performance by the person with disability, be it physical, psychological or social, needs to be compensated by the caregivers. This leads to unavoidable stress and psychological trauma among the families. In India care provided for MR is mainly home based and alternate support systems such as day care centers, weekend care and special schools are meager hence the burden of care can be enormous. Socio-economic level of the parents, seem to contribute to the creation of stress², have an impact on the diagnosis of the child’s disability. The presence of a member with mental retardation irrevocably changes the family unit and affects all individual members³. Many areas may be affected, including family relationships, finances and recreational life, house hold functioning, care giving demands and siblings. The physical, social and emotional functioning of the family members is profoundly interdependent, with changes in one part of the system reverberating in other parts of the system. Families which are capable of coping with having a mentally retarded child are able to mobilize their internal and external means of support to deal effectively with special needs of their child. The ability of the family to cope with any situation will often depend on their strengths and resources. In this study the coping strategies and mediating factors studied were awareness about the child's problem, expectations and attitudes, child rearing practices, social support and global family adaptation. Parents of disabled children in public serve to compound their own sense of embarrassment and adopt stances of defiance, curtness or sometimes are apologetic⁴. The burden of care taking is often increased and more prolonged in a child with a mental handicap. There may be secondary problems associated with the mental handicap which increases the workload of the parents. Anyone who provides care for another person will find their life is altered due to responsibilities they have assumed. Physical exhaustion can be a real problem for caregivers, especially if they are not in good health. In comparison with parents of normal children, parents with mentally retarded children experience more stress^5,6,7,8. Social isolation can also be a problem for primary carers when the conflicting demands of their families and the cared for person mean that their time is carefully allocated between the two groups, leaving little spare time for making contact with people outside the family boundaries⁹. Caregivers need a comprehensive system of care, complete information that can facilitate the process of family adaptation, social support which includes the nuclear family, the extended family, friends and acquaintances, neighbors, co-workers, families who have children with similar disabilities and skills for coping with the mental disorder.

 

MATERIALS AND METHODS

Place Of Study :

Type Of Study : This was a Descriptive Cross Sectional study.

Sample Collection : Sample size: 50 subjects

Sampling Methods : Non probability convenient purposive sampling

Inclusion Criteria :

1. Age of Parent : 18-65 years.
2. Age of Child : 2- 18 years.
3. Parents having children with IQ<70.
4. Language compatibility with Hindi-Marathi-English and Gujrati.

Exclusion Criteria :

1. Any major medical/surgical illness.
2. Unwilling parents.

Statistical Methods : Analysis of data was conducted using the SPSS 19.0 software. Correlations were carried out with Pearson's rank correlation coefficient. Two tailed P values ≤0.05 was considered as statistically significant.

Ethical Approval : Approval was taken from the Institutional Ethics Committee prior to commencement of the study.

 

OBSERVATIONS AND RESULTS

There were 50 children having mental retardation ranging from 5-18 years of age. The mean age was 11.58 years and standard deviation was 3.5. More males than females were affected, 24% were lowest in birth order, and 25% had IQ between 70-50. All most half the children were last born (48 %) followed by 36 % of first born and 16 % born in between. Maximum children (50 %) had mild level of mental retardation, closely followed by 44% having moderate level and 4% and 2 % having severe and profound mental retardation respectively. Majority of children were 36 (72%) Hindu by religion and 13 (26%) were Muslims. 10 (20 %) were born of a consanguineous marriage and 40 (80%) were born from a non consanguineous union. All most 2/3^rd (74%) children were attending a special school for mentally handicapped whereas only 4 (8%) were attending a general school, and 9 (18%) children were found to have no schooling at all.

Table 1: Socio-Demographic Profile of Intellectually Disabled Children

 

Table 2: Socio-Demographic Profile of Parents

 

The mean age of parents was 40.4 years with standard deviation of 7.62 and ranged from 26 to 61 years. The average time spent with child was 12 +/- 8 hours/day and ranged from a minimum of 2 hours/day to a whole day taking care of the child. The samples were predominantly females i.e.; 62 %( 32) mothers and only 36 %( 18) fathers. Almost all 98% (49) were living together with both parents and only one child had a single mother. 58% (29) were living in nuclear families and 42%(21) were from joint/extended families. This is because of the prevalent Indian culture of living with parents even after marriage. 60% (30) were educated up to high school and more, whereas 30%(15) were having only primary education and 10 % were illiterate. 58% (29) parents were unemployed, 18%(9) had self-skilled jobs and 34%(12) of them were in skilled jobs. According to Modified Kuppuswamy socio-economic class 36% belonged to lower class, 30% parents belonging to lower middle class and 28% in upper middle class. Only 3 parents belonged to upper class. This finding is indicative of the population group visiting a Government Hospital Unit.IQ scores of mentally retarded children range from 17-69 with mean IQ as 50 and standard deviation as 12.2.

 

Table 3: Scoring of the scales