Intellectual disability is not a single, isolated disorder. The American Association of Intellectual and Developmental Disability (AAIDD) provide a tri-dimensional definition of intellectual disability which is currently the most widely accepted. Intellectual disability, which originates before the age of 18, is a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior (AAIDD, 2007).
As defined by the American Academy of Child & Adolescent Psychiatry (AACAP), adaptive behavior covers a range of everyday social and practical skills in communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work. This categorization sub-classifies intellectual disability according to the intensity and nature of needed supports. In addition, it emphasizes the need for detailed assessment in all relevant domains, including psychological and emotional functioning (AACAP, 1999).
In recent years, American Association on Mental Retardation (AAIDD, 2007) have adopted the new terminology and replaced the term “mental retardation” with intellectual disability. “Mental retardation” is still used, however, in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) (American Psychiatric Association, 2000). The concept of Quality of Life has been developed over many decades and applied to a wide range of target groups and whole populations. “Quality of life is a matter of subjective experience.
The concept has no meaning apart from what a person feels and experiences”. 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. It is a broad-ranging concept, incorporating in a complex way, the person’s physical health, and psychological state, level of independence, social relationships, personal beliefs, and relationship to salient features of the environment.
Quality of Life is increasingly being used to plan, deliver and evaluate services for children with intellectual disabilities. It has its roots in the ‘normalisation’ and ‘inclusion’ movements and its influences can be seen in legislation, policies and programmes that aim to improve the lives, personal satisfaction, success, community membership and participation of individuals with disabilities (Silvana et al. , 2002).
It is considered a potentially unifying concept for service providers allowing them to assess the value of their programmes by the impact that they have on the quality of the services users’ lives (Felce, 1997). To successfully secure equal citizenship and promote positive quality of life for children with intellectual disability we need to explore what supports are required for such outcomes and what barriers parents of children with intellectual disabilities perceive may exist in their environment in the attainment of that quality of life of children with intellectual disabilities.
Review of literature: Parents of children with newly diagnosed SpLD regard four domains (psychological, environment, social relationships spiritual) as significant contributors to their overall QOL. Mother of children with Sp L. D 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. (Karande and Kulkarni,2009). Parents of children with SpLD experience a lot of stress and impaired mental health ( Karande and Kulkarni ,2005).
Parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson 2003). Sloper (1999) stated that parents often have to negotiate complex barriers to access support services such as respite, health or social care and Chadwick et al.
Suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. Aim: The present study will find out the quality of life of parents of children/adults who have an intellectual disability and who are availing of services from different rehabilitation centre in New Delhi. Objective of the study: •To study the quality of life of parent of children with intellectual disabilities. •To study socio-economic status of parents of children with intellectual disabilities.
To study the relationship between specific domain of quality of life of parents and level of severity of children with intellectual disabilities. •To study the relationship between quality of life of parents of children with intellectual disabilities and socio economic status of family. •To study the effect of gender of child and quality of life of parents. Hypothesis: •There will be significant relation between specific domain of quality of life of parents and level of severity of children with intellectual disabilities.
There will be significant relation between quality of life of parents of children with intellectual disabilities and socio economic status of family. •To study the effect of gender of child and quality of life of parents. •There will be significant effect of parental education, occupation on quality of life of parents having children with intellectual disabilities. •There will be significant effect of quality of life of parent in respect to age of children with intellectual disabilities. Methodology: Research Design: •The present study is exploratory in nature. Sampling method:
A purposive incidental sample of 60 parents having children with Mental Retardation. Sample size: •Total sample are 60. •15-Parents having child with mild mental retardation. •15-parents having child with moderate mental retardation. •15-Parents having child with severe mental retardation. •15-Parents having child with Profound mental retardation. Inclusion: •The Parents having children with mental retardation with below IQ 70. •The Parents belong to rural and urban family. •The children with mental retardation with associated condition Epilespy, Down syndrome, and Speech and language Impairment.
The children with mental retardation with Behaviour Problem. Exclusion criteria: •The parents having children with Autism, Learning Disabilities, cerebral Palsy, Physically Handicapped, Hearing handicapped, and Visual Impairment. •Children with having borderline and above level of intellectual functioning. PROCEDURE: After obtaining their informed consent the following tools will be administered on Parents of children with intellectual disabilities. TOOLS: 1. Data sheet: A specially designed Performa to obtain the demographic and clinical details will be used. 2.
WHO Quality of life- BREF: For assessing quality of life of parents having children with intellectual disabilities. The WHOQOL-BREF 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. It is designed for cross-cultural subjective assessment and it can be used in any country where people can read and understand English. The universality of the WHOQOL-BREF has been found to be remarkably adept at identifying facets of QOL which are cross-culturally important.
It measures 26 items and it is possible to derive four domain (area) scores. The WHOQOL-BREF produces a quality of life profile. It is possible to derive four domain scores. There are also two items that are examined separately: question 1 asks about an individual Vs overall perception of quality of life and question 2 asks about an individual vs. overall perception of their health. The four domain scores denote an individual Vs perception of quality of life in each particular domain. Domain scores are scaled in a positive direction (i.e. higher scores denote higher quality of life).
The mean score of items within each domain is used to calculate the domain score. Mean scores are then multiplied by 4 in order to make domain scores comparable with the scores used in the WHOQOL-100. The method for converting raw scores to transformed scores when using the instructional method given in manual, the first transformation method converts scores to range between 4-20, comparable with the WHOQOL-100. The second transformation method converts domain scores to a 0-100 scale