Pradeep kumar1, Sushma Rathee2, Amrita Rani Singh3

1Consultant, Psychiatric Social Work, State Institute of Mental Health, PT., B. D. Sharma University of Health Sciences, Rohtak, Haryana. 2Assistant Clinical Psychologist, PGIMER Chandigarh. 3Director, HOPE special school, a unit of Sachin Divyang Jan Sewa Sansthan, at Juran Chapra Road, Muzaffarpur, Bihar.

Correspondence: Sushma Rathee, e-mail:


Parents who have children with intellectual disabilities are often reported to have physical and psychological distress related to caring for their children, thus affecting their quality of life. Parents or care-givers are definitely the heart of the family; who not only have to deal with the issues associated with child’s impairment but also have to maintain the household. Today, a number of studies have demonstrated that caregivers are more vulnerable to develop mental and physical problems as compared to non-caregivers.

The aim of the present study was to assess the relationship between quality of life and family burden among the parents of children with Intellectual.

Quality of life scale and family burden schedule was administered on 120 parents of children diagnosed with Intellectual Impairment.

This study was cross-sectional study and conducted at a day care center of a non-governmental registered organization, Muzaffarpur, Bihar.

Results and conclusion:
It has been found that quality of life negatively related with economic family burden, family functioning, family relations, interpersonal relations of parents, other family burden and the quality of life positively related with intellectual functioning. It indicates that the level of intellectual functioning will increase then quality of life become also better.

Kew Words: Quality of Life, family burden, parents, intellectual impairment.

The field of intellectual impairment (ID) is strongly influenced by the Quality of Life paradigm (QOL), from a research, a practicebased, and a policy-oriented perspective (Claes, van Hove & van Loon et al., 2010). Parenting style of intellectual disable (ID) children is more challenging in comparison to normal children, because, ID is characterized by significant impairment in cognitive and adaptive behavior. The term used to describe this condition has gone under constant change over the years due to social and political compulsions. The main reason to search for a new term was to find a least stigmatizing terminology. Thus, mental retardation, which was in use world over till late 20th century, has now been replaced with ID in most English speaking countries (Chavan, Rozatkar, & Abhijit, 2014). Worldwide prevalence of intellectual impairment is reported to be as high as 2.3% (Franklin & Mansuy, 2011) and in India it is reported to be around 2% for mild intellectual impairment and 0.5% for severe intellectual impairment (Srinath & Girimaji, 1999). According to National Sample Survey of 2004, 94 people per 100,000 were found to be mentally retarded1. Intellectual impairment has enormous social effects; it not only affects the people who suffer from it but also the family and society as a group. Parents show a series of reactions after knowing that their child is disabled. These include shock, denial, guilt, sorrow, rejection and acceptance. Question like ‘why me?’ How can it be?’ keep arising without answers. Some of them undergo tremendous guilt feeling, experience deep sorrow, have strong under expectations of achievement, may have unrealistic goals, may want to escape from reaction and ultimately turn to accept the child (Berdine & Blackhurst, 1985).
A study examined the social problems related to the presence of intellectually disabled child. Results indicated that parental feelings were marked by anxiety about future. Also, negative effects towards other siblings, psychological stress, decreased interaction with neighbors and relatives, misunderstandings within family and economic loss were significant facts associated with presence of a child with intellectual impairment in the family. The definition of individual quality of life has been debated more over the last three decades and has been defined differently depending on the researcher (Brown 1997). Quality of life is a multidimensional construct encompassing several core domains, generally identified as material conditions, physical status and functional abilities, social interactions, and emotional well-being (Schipper et al.,1996). Regardless of the specific way individual quality of life is defined as general feelings of well-being, feelings of positive social involvement, and opportunities to achieve personal potential (Schalock, Brown & Brown et al., 2002).
They have also agreed that quality of life should include various domains of life and taken together as a whole should encompass the entirety of life (Schalock, Brown & Brown et al., 2002). The predominant view is that mental retardation creates stress and burden for the care givers (Sethi , Bhargava & Dhiman, 2007). Parents may experience the impact of financial burden, restricted social interactions, and mental worries and so on and the high level of stress or mental health problems experienced by parents of children with ID could be related to subjective factors such as feeling social isolation and life dissatisfaction (Ma jumda r, Pe rei ra & Fernandes 2005). According to a 2012 report from the National Council on Impairment, in custody cases, “removal rates where parents have a psychiatric impairment have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual impairment, 40 percent to 80 percent. Parents of these children may struggle with a multitude of emotions interchangeably over years, and often have feelings of guilt that somehow they caused the child to be disabled, for logical or illogical reasons (Upadhyaya & Havalappanavar 2008). Panday and Fatima (2016) have found that direct relationship between the degree of perceived burden, social emotional burden, disruption of family routine and disturbance in family interactions for women with intellectually disabled children rather than men (Panday & Fatima 2016). Another finding indicated that parents of male children have good Quality of Life in comparison to the parents of female children. There was a significant gender difference in perceived stress among parents having children with I D. Mothers perceive more stress than father (Verma, Srivastava & Kumar 2017). Mothers of children with ID displayed lower physical health, impairment in social relationships, in their psychological state and poo re r perception of their envi ronment (Singh, Kumar, Kumar & Chakarborti, 2016).

In the present s tudy we assessed the relationship between intellecual fuctioning, family burden and quality of life of parents with intellectual impairment.

The study was conducted at a day care center HOPE special school, a unit of Sachin Divyang Jan Sewa Sansthan, a non-governmental registered organization at Juran Chapra Road, Muzaffarpur, Bihar nearby 55 k. m. from Sitamarhi the great Indian mythological Ramayan character Mata Sita birth place The study was conducted between the periods of March 2019- June 2019. This study was crosssectional and correlational research.

A group 240 sample was recruited in the present study. The one hundred twenty children with intellectual impairment Mean ± SD (54.90±11.33) and 120 parents (60 male and 60 female) were selected with the Mean ± SD of (37.96±6.97) on the basis of their availability and purposive sampling techniques. The education of the caregivers was ranged with Mean ± SD of (12.45±3.62). The Mean ± SD of the children’s age were 10.40±4.27.

Inclusion Criteria:
1. The parents who were living with the child with Intellectual functioning (I.Q. between 70-40)
2. Participants have at least primary education.
3. Exclusion Criteria
4. Participants having primary diagnoses of psychiatric illness.
5. Presence of any major medical or neurologicalillnes s o r other developmental disabilities in children.
6. Refuse to give informed consent.

Inform Consent Form and Socio-demographic and Clinical data Sheet:
A consent form and socio-demographic record sheet was prepared for taking the written inform consent and collecting the information about various areas of social, demographic and clinical variables. Information relating to age, sex, residence, marital status, education, types of family, occupation, age of child, level of intellectual impairment of child, duration of illness, other psychiatric illness, family history of psychiatric illness, were recorded in as structured interview setting and Seguin Form Board Test (SFBT), Family burden interview schedule (FBIS) and WHO Quality of Life BREF Scale were applies on the participants.

A total 120 children with intellectual impairment and 120 parents of intellectual impaired children were selected for the study, those who fulfilling the inclusion criteria. After explaining the purpose of study to caregivers their written informed consent was taken and then the actual administration of the study was started. In the study first, the intellectual functioning of the children were assessed after that their parents were assessed on family burden and quality of life scales respectively. The parents of the selected intellectual impaired children’s were equally involved as father and mother. The scoring of the scales was done with the help of their respective manual.

The data was analyzed with using SPSS 16.5 as per suitable analysis techniques including descriptive and inferential analysis. In the demographi c variables only caregivers information was analysized (N=120), because the caregivers were actul participants of the present study that is why only the i r demographic details were recoreded. The children’s intellectual functioning and their age were taken as covariate variables in the present study. In the rest part of analysis including descriptive and correlation the complete data (N=240) was included.

Table 1 showing the characteristics of demographic varaibles
Table 2 showing the discriptive analysis of Quality of life & Family burden
Table 3 Showing the results of correlation between intellectual functioning of childrens and family burden and quality of life of their parents
The socio-demographic findings of the present study indicated that the sample was equally divided (Male=50% & female= 50%). In the residence variable 20% sample belongs to rural background, 76.7% were urban and 3.3% were sub-urban. Occupation-wise distribution indicated that 0.8% sample was students and 18.3% were businessmen, whereas in government job and other work were found as 14.2% and 66.7% respectively. In the total participant 95% were Hindu and 9.2% were Muslim.
The discriptive analysis of varaibles (Socio demoghaphic, intellectual functioning, quality of life and family burden) disclose that that mean age of the sample was 37.96±6.97. In the education mean (SD) has been found 12.45±3.62. Age of the child found as mean value of 10.40(4.27). On the age of the child variable the mean value is 54.90(11.33), while variable of intellectual functioning of child the mean value of the sample is 54.90 (11.33). The main aim of the present study was to find out the relationship between intellecual functioning,family burden and quality of life of parents with intellectual impairment . Earlier studies have shown that parents of children with disabilities feel the sense of failure, helplessness and guilt (Dervishaliaj 2013). The findings of the this study emphasized that quality of life negatively related with economic family burden, family functioning, family relations, interpersonal relations of parents, other faily burden. There are several studies have been done, which shows the relationship between QOL and family burden of parents with ID. Venkatesan and Das (1994) report that the type of burden reported by family members may range from difficulties in transportation of the child to the place of service delivery, management of behaviour problems, disruption of their daily routine, economic, physical and social burden. Kermanshahi et al., (2008) in their study on perceptions of lives with children with intellectual impairment found six major theme s : challenging the pr oce s s of acceptance, painful emotional reactions, the interrelatedness of mother’s health and child’s well- being, struggles to deal with oneself or the child, inadequate support from the family and the community, and the anxiety related to child’s uncertain future. Lin et al. (2009) found the reduced quality of life of caregivers of children with intellectual disabilities, which are caused by factors such as health of caregivers, family income and the stress caused by a lack of social supports. In another way we can say that the qaulity of life increase the level of family burden in all dimensions decrease.
The quality of life positively related with intellectual functioning. It indicates that when the level of intellectual functioning increased the of quality of life become healthy and much better. Similary in the results negative relationship found between qaulity of life and age of the child that is not significant but it indicates that as the age of the child incserase the quality of life decrease. In the dimension of family burden i.e. economic family burden, reduction in family functioning due to family burden negatively related with level of intellectual functioning at significant level. It indicates that the level of intellectual functioning are increased the family burden in these dimension be reduced. Another domains of family burden (Family Relations, Interpersonal relations of parents, Effect on Physical Health, Effect on Mental Health and Other family burden) were also negatively related with intellectual functioning. Growing evidence suggests that care giving to these children leads to burden in the caregivers. There is a big challenge to manage the negative consequence of care giving, to develop and implement realistic and appropriate response strategies. In our country where we have limited resources and it is high time that we should realize that we may not develop holistic health of the patients if the care givers are overburdened. So, treatment providers should shift their focus to the mental health of care givers too along with that of individuals with mental retardation and on successful resettlement in society, as it will be associated with increased met needs (Kuldeep et al., 2014). In the variables of age of child and domains of family burden also found positive relationship. It indicates that if the age of child increase the the family burden also increase.
Now it’s clear that the family burden of the parents of intellectually disabled children is important for providing professional support to families who suffer from burden and for identifying coping behaviors. The families of these children will feel that they are not alone and will be able to receive professional support for the issues that burden them. Doing so will make it possible to teach people according to their abilities and ensure that they can lead lives without causing stress and burden for their families and society.

The results of this study can have large practical implications . Parents are undoubtedly the heart of the family; who not only have to concern with the issues associated with child’s impairment but also have to maintain the household. Parents should be provided with individual and group support in coping with the everyday challenges. Individual counseling will help them in development of competences for parental role and empower them to advocate for the rights of their children. As the mothers are more vulnerable in this sense, they should be a priority for support provision. The position of mothers can be facilitated with additional financial resources from the state, which will help in getting a better childcare and better child treatments. Mothers should also have some benefits regarding their employment status in the sense of flexible working hours. Society as a whole should recognize the efforts mothers make in supporting their children with disabilities. It is time to accept the challenges and responsibility, specially the mental health professionals and special educators and provide care to this vulnerable as well as needy population. These finding must be taken into account in policy making to provide better and more specific support and interventions for parents of children with intellectual impairment.

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Conflict of interest: None
Role of funding source: None

It’s a matter of great pride for me that All India Association of Medical Social Work Professionals is launching first issue of “Indian Journal of Health Social Work” on the auspicious occasion of 6th Annual National Conference of AIAMSWP, 2019.

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