Agreement in quality of life assessment between adolescents with intellectual disability and their parents

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Highlights

Abstract

Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without intellectual disability and their parents.

Participants included 67 adolescents with intellectual disability and the same number of their parents. Control group consisted of 122 typically developed adolescents and an equal number of their parents. In order to assess the quality of life we used The PedsQL 4.0 Generic Core Scale questionnaire, for adolescents aged between 13 and 18 and their parents. Agreement in assessing quality of life between adolescents and parents was analyzed using t-test, Kappa Statistics and Pearson correlation.

The agreement between adolescents with intellectual disability and their parents was found to be acceptable (k = 0.43), while the agreement between adolescent from control group and their parents was judged to be good (k = 0.84). Correlations between adolescents with intellectual disability and their parents varied across subscales from weak (r = 0.31) on the physical health subscale to moderate (r = 0.56) on the social subscale. Adolescents with intellectual disability were less satisfied with their social functioning. The highest agreement, as well as the lowest means value was found on the social agreement scale.

Assessment of the quality of life by both adolescents and their parents provides a comprehensive insight into functioning and different aspects of quality of life in these adolescents.

Introduction

Quality of life is a multidimensional construct that depends on our physical and social environment, as well as on our emotional and existential reactions to the environment (Cummins, 2005, Fairclough, 2010). Renwick and Brown (1996) considered that quality of life should be viewed as a dynamic process that can change over time and can be assessed at any point in time (Renwick & Brown, 1996). The quality of life of persons with disabilities has been studied through the prism of rehabilitation, health and medical care, health promotion and to a lesser extent education (Brown & Brown, 2003). To date, researches have shown that the quality of life for children with developmental disabilities is lower than the quality of life for children without developmental disabilities, as well as that different disabilities have different effects on the quality of life in general and in specific aspects of functioning (Watson & Keith, 2002). In recent years, attention has been given to the quality of life of children with different types of disability and thus the subject of researches were children with multiple disabilities (cerebral palsy, attention deficit hyperactivity disorder, children with developmental disabilities due to cognitive and sensory impairments (Arkkila et al., 2009, Boulton et al., 2006, Limbers et al., 2009, Rajendran and Roy, 2010, Shipman et al., 2011, Tadić et al., 2010, Thurston et al., 2010a, Varni and Burwinkle, 2006). Results of these researches showed that the quality of life of children with developmental disabilities is lower than the quality of life for children without developmental disabilities (Arkkila et al., 2009, Boulton et al., 2006, Limbers et al., 2009, Rajendran and Roy, 2010, Shipman et al., 2011, Tadić et al., 2010, Thurston et al., 2010a, Thurston et al., 2010b, Varni and Burwinkle, 2006). The quality of life of children has declined in proportion to the severity of impairment, as well as the presence of related disorders or other chronic diseases. Also, the quality of life decreased with the age of children and the older children had lower quality of life than younger children (Thurston, Paul, Ye, et al., 2010). A number of studies have shown that the psycho-social aspects of life were more in danger than physical aspects. Due to the inability to obtain an adequate response of children with developmental disabilities, assessment was most often made by their parents, teachers, educators and therapists (Limbers et al., 2009, Thurston et al., 2010a). A certain number of researches have taken into account the self-assessment of a child with developmental disabilities and the assessment of his/her parents, thus gaining a holistic picture of the child's quality of life (Eiser and Morse, 2001, Shipman et al., 2011, Varni and Burwinkle, 2006, Varni et al., 2007a, Varni et al., 2007b). In some studies where assessments were made by the children and their parents, there was a low to moderate agreement between the responses, especially when it comes to children with intellectual disability (Janssen et al., 2005, McVilly et al., 2000). Parents tend to assess the quality of life of their children lower than do children (Shipman et al., 2011, Varni and Burwinkle, 2006). Although self-assessment is seen as the standard for measuring quality of life, in some cases, when a child is too young, with developmental and cognitive disability, too sick or exhausted, it is necessary to take into account the assessment of the quality of life of the child performed by a parent, guardian, educator, teacher and so on. In order for a child to be eligible to perform the assessment of his/her quality of life, he/she needs to reach a certain developmental level, which includes competency in verbal comprehension, understanding and use of the concepts of time, differences in developmental milestones and identification of the quality of life domains and important milestones (Wallander, Schmitt, & Koot, 2001). Taking into account the specificities of certain types of disabilities, as well as the individual needs of children and their parents should serve the process of making a plan to provide developmental disability services, programs, individual interventions and treatments, monitoring the effects of new strategies (guidelines) in practical work with these children, with the aim to establish an optimal quality of life for children with developmental disabilities. The main objective of this study was to determine whether there is an agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without intellectual disability and their parents.

Section snippets

Participants

The study included 189 adolescents aged 13–18 years and the same number of parents. The sample was divided into two groups. Group I comprised 67 adolescents, of which 35 (52.24%) boys and 32 (47.76%) girls with intellectual disability, with the mean age of 15 years and 10 months (SD = 14.74) and 67 parents of adolescents with intellectual disability. Based on data from school records on intellectual functioning level, in this group of adolescents 62 (92.54%) were students with the mild

Results

Reliability of PedsQL 4.0 was computed on the whole sample, separately for adolescents and parents. Cronbach alpha coefficient (α) ranged from 0.61 to 0.78 for questionnaire subscales completed by adolescents and between 0.68 and 0.85 completed by their parents .The coefficient of the summary scale of the questionnaire completed by adolescents was α = 0.86, and a little higher for parents α = 0.89. The lowest level on the basis of responses obtained from adolescents referred to the subscale related

Discussion

By analyzing questionnaires on the given sample based on Cronbach coefficient and average inter item correlation, we can say that the applied the PedsQL 4.0 Generic Core Scale has satisfactory reliability, and can be applied on the group data analysis. If we compare the reliability values, we obtained in the analysis of data, depending on who is completing the questionnaire, we can conclude that questionnaires completed by parents showed better reliability compared with those completed by

Conclusion

Obtained research results suggest that to improve the quality of life for children with intellectual disability, ongoing commitment is needed in providing expert support, assistance, and services, particularly in the domain of psychosocial health. By analyzing some aspects of quality of life, it was found that the psychosocial health was assessed lower than physical functioning both by adolescents with intellectual disability and their parents. There is a moderate agreement between adolescent

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