Quality of life in families of children with autism spectrum disorder in India

Transcription

1 Research Article ISSN: Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), Available online through Quality of life in families of children with autism spectrum disorder in India Vaithi Perumal 1*,Vimala Veeraraghavan 2,Om Prakash Lekhra 3 1 Prof & Head, Rehabilitation, SAIMS Medical College, Indore,M.P.,India 2 Ex. Emiritus Professor, Discipline of Psychology,IGNOU, New Delhi,India 3 Assoc. Professor, Dept of Neurology SAIMS Medical College, Indore,M.P.,India Received on: ; Revised on: ; Accepted on: ABSTRACT Background: Autism Spectrum disorder is a complex developmental disability which is fast growing in nature across the globe. Disabilities in children cause not only financial burden but also leads to incomplete state of wellbeing in physical health, psychological health and social health of the families. Aims of this study were to evaluate the QOL in parents of Children with autism, physically disabled as compared to a control group; to compare the QOL of parents of children with autism as per the severity of condition. Methods: The sample consisted of 140 parents (73 mothers and 67 fathers) of 54 Children with autism, 38 children with physical disabilities and 48 healthy children. Diagnostic assessment scales Indian Scale for Assessment of Autism and Functional Ambulation Classification system were used and Quality of life was assessed by the WHOQOL-BREF questionnaire. Results: One way ANOVA and Post Hoc test were used to identify the significant difference of quality of life scores. Parents with Children with Autism Spectrum disorder showed significantly lower quality of life compared with parents of healthy children and parents of children with physical disabilities (p<0.01) in all the four domains of WHOQOL-BREF. Little differences were observed in between physical disability group and normal group in Physical domain and psychological domain, however significant difference was found in social and environmental domain of WHOQOL-BREF. Conclusion: Compared with parents of children with physical disability and normal children, the parents of children with autism spectrum disorder had shown significant impairment in all the four domains (Physical, Psychological, Social and Environmental) measured by WHOQOL-BREF. These findings would help the health care professionals to develop appropriate supportive groups and psycho social intervention programs for the families of children with autism spectrum disorder. KEYWORDS: Autism Spectrum Disorder, Quality of Life INTRODUCTION Children make the family complete. Whenever a new member arrives at the family they bring more joy. However, when the child has any medical or developmental difficulty the family is influenced in a negative way and often life becomes miserable for them. Autism Spectrum disorder is one such developmental condition whose incidence is increasing rapidly across the globe. This condition was first described by Leo Kanners in and later studied by many researchers. It is one of the most severe developmental disabilities which appear in the first three years of life. It involves impairments in social interaction and verbal and nonverbal communication. Some people with autism have limited interests, strange sleeping or eating behaviors or a tendency to do things to hurt themselves, such as banging their heads or biting their hands 2. In the individual, Autism Spectrum Disorder affects communication skills, social interaction and behavior 3 ; while in the family it affects *Corresponding author. Vaithi Perumal Prof & Head, Rehabilitation, MOT MSc MPhil D Rehab,M.P. India interactions with the child, between parents and between the family and the community 4. Studies have reported that parents of children with various developmental disabilities experience heightened stress 5, overburden and marginalization in society 6 sense of self blame 7, tiredness or exhaustion 8. Parenting children with Autism spectrum disorder is more stressful than parenting typically developing children or children with other developmental disabilities 9. In a study conducted by Fox et al.(2002), parents indicated that they refrained from participating in activities outside the home because their attention was constantly on their child with autism and because they felt that others did not understand their child s behavior problems 10. Thus Quality of Life of the families of children with Autism spectrum disorder is influenced by its varying degrees of behavioural problems. QOL in Autism Quality of life measures are increasingly used to supplement objective clinical or biological measures of disease to assess the quality of

2 Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), service, the need for health care, the effectiveness of interventions, and in cost utility analyses 11. QOL can be measured by a variety of generic and disease-specific instruments. The World Health Organization Quality of Life scale (WHOQOL and its shorter version WHOQOL-BREF) was developed as cross-cultural tool for intervention studies in health care settings and a Hindi version is also available 12. by Physiotherapists. Participant parents of the normal healthy children were selected if they had no children with any diagnosis of physical or behavioural disorder in their family. Parents with any known medical or psychiatric illness, with any major family problems, single parents or with children having known degenerative conditions and active infections were excluded from the study. Need of the study Because there is no complete cure for Autism Spectrum Disorder, any recognized amount of a successful outcome for children shall improve their family s quality of life 13. Hence, the quality of life of family evaluation shall also assist in identifying the effectiveness of the services provided for the management of such children. Though Autism spectrum disorder is not uncommon in India 14, unfortunately, very few studies are only done on measuring the quality of life of families of children with autism spectrum disorder in India. So this study was initiated to find the quality of life of families of children with autism spectrum disorder in India. This shall assist in identifying the effectiveness of services available in India and also it would give us guidelines for managing the stress related issues in the family. Aims and Objectives To evaluate the QOL in parents of children with Autism, children with physical disabilities and normal healthy control group MATERIALS & METHODS Sample The sample consisted of 180 participants who are parents of children with autism (n=60), children with physical disabilities (n=60) and healthy children (n=60). Children with autism and children with physical disability were those receiving therapy programs at different rehabilitation centers, therapy clinics and special schools in Indore. Parents of normal children were recruited from a recreational activity club for normal children. For this study we considered parents with children aged 3-15 years. Participant parents of children with autism were included if their child was diagnosed with Autism Spectrum Disorder by either pediatrician of neurologist and confirmed by clinical psychologist. Children with autism underwent comprehensive diagnostic assessment based on DSM IV -TR and Indian Scale for Assessment of Autism (ISAA). Participant parents children with physical disability were diagnosed medically by pediatrician, neurologist or orthopedist and confirmed Tools 1. Sociodemographic Performa: A socio demographic performa was filled prior to the study after taking initial consent from the parents. This performa consisted various details about the parents and children such as age, gender, education, occupation, social economic status, family type, age of diagnosis of illness, duration of illness, number of working parents, number of normal siblings and about reported medical conditions. 2. Indian Scale for the assessment of Autism (ISAA) Indian Scale for Assessment of Autism (ISAA) was developed by the National Institute for Mentally Handicapped (NIMH) for diagnosing and measuring the severity of autism in It is a reliable and valid tool for making diagnosis of person with autism. High concordance between ISAA and gold standard of CARS were observed 16. This scale was based on CARS and was developed considering the Indian socio-cultural context. This scale has 40 items divided under six domains social relationship and reciprocity; emotional responsiveness; speech, language and communication; behavior patterns; sensory aspects and cognitive component. The items are rated from 1 to 5, increasing score indicating increasing severity of the problem. A score of <70 indicates no autism, (mild autism), (moderate autism), and >153 (severe autism). It takes about 15 to 20 minutes for administration of ISAA. This scale was devised with the aim of quantifying the severity of autistic symptoms so as to enable measurement of associated disability. 3. Functional Ambulation Classification system The Functional Ambulation Classification System 17 categorizes patients according to basic motor skills necessary for functional ambulation, without assessing the factor of endurance. Score ranged from 1 (Non-functional ambulator) to 6 (Ambulator Independent). 4. WHO Quality of Life BREF (WHO QoL-BREF): In order to assess QoL, the Hindi version of the WHOQoL-BREF 18 was used. The WHOQoL-BREF, an shortened version of the WHOQoL-100, is a self-administered questionnaire. It comprises of 26 items categorized into four broad domains: physical health, psychological health, social relationships and environment health. The items are rated on a 5-point scale 19.

3 Procedure This study was conducted at Ergocare Health Rehabilitation Centre and Occupational Therapy Research Academy, India. This study was conducted during a period of one year (December 2012 to Nov 2013). Participants were included based on the criteria and a written informed consent was taken from them after providing all the necessary information about the study. The sample were divided in to three groups, Group 1 consisted Parents of Children with autism, Group 2 consisted parents of children with physical disabilities and group 3 comprised of parents of normal healthy children (Control Group). Either of the parents (mothers or fathers) of all these 180 children was assessed for their quality of life using the WHOQOL-BREF questionnaire. The WHOQOL-BREF questionnaire with more than 20% of missing data, missing items of Q1 or Q2 or missing more than two items from the domain (more than 1 for the social health domain) were discarded. If an item was missing, the mean of other items in the domain was substituted (WHO, 1998). Data analysis Data collected was interpreted using central tendencies and compared through ANOVA and post hoc analysis for multiple comparison. The IBM Service Product for Statistical Solution 20 (IBM SPSS Statistic, version 20 was used. Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), RESULTS In group 1 only 54 questionnaires were considered for the study as 6 were not returned to the author resulting a drop-out rate of 10%. The group of participants of parents of children with physical disability had 38 complete questionnaires with a drop-out rate of 37%. Of these 22 questionnaires 10 were not returned and 12 had missing data beyond acceptable limits. Only 48 questionnaires were returned in the group 3 with a drop-out rate of 20%. 14 questionnaires were not returned and 6 questionnaires had missing data beyond acceptable limits. The final sample (table 1) for the study consisted 140 parents (67 fathers and 73 mothers) of children with autism spectrum disorder (n=54), physical disability (n=38) and normal health controls (n=48). Group 1 (ASD group) consisted 54 children with autism spectrum disorder and they were further classified in to Mild (n=15), Moderate (n=24) and severe (n=15) based on the scores of ISAA. Their mean age is 7.25±3.25 and there were 43 boys and 11 girls. In this group 22 respondents were fathers and 32 were mothers. Group 2 (PD Group) consisted of 38 children with various diagnosis Table-1: Demographical data of parents of children with Autism Spectrum Disorder, Physical disability and normal Controls ASD (n=54) (39%) PD (n=38) (27%) Control(n=48)(34%) Total (n=140) Fathers/Mothers 22/32 (41%/59%) 20/18 (53% / 47%) 25/23 (52% / 48%) 67/73 (48% / 52%) Age (Yrs) 36.2± ± ± ±12.6 Family Type Nuclear 27 (50%) 16 (42%) 30 (62%) 73 (52%) Joint 27 (50%) 22 (58%) 18 (38%) 67 (48%) Working Parents Single 48 (89%) 28 (74%) 34 (71%) 110 (78%) Both 6 (11%) 10 (26%) 14 (29%) 30 (12%) Socio Economic Status Upper class 9 (67%) 5 (13%) 6 (13%) 20 (14%) Upper middle class 26 (48%) 12 (31%) 14 (29%) 52 (37%) Lower middle class 16 (30%) 11 (30%) 16 (33%) 43 (31%) Upper Lower class 2 (4%) 6 (16%) 7 (15%) 15 (11%) Lower class 1 (2%) 4 (10%) 5 (10%) 10 (7%) Education of Fathers/Mothers Above post-graduation 15/5 (28% / 9%) 11/6 (29% / 16%) 13/8 (27% / 17%) 39/19 (28% / 13%) Graduation 29/21 (53% / 39%) 10/9 (26% / 24%) 14/15 (29% / 31%) 53/45 (38% / 32%) Up to higher secondary 8/23 (15% / 43%) 12/18 (32% / 47%) 19/23 (40% / 48%) 39/64 (28% / 46%) No formal Education 2/5 (4% / 9%) 5/5 (13% / 13%) 2/2 (4% / 4%) 9/12 ( 6% / 9%) Children details Boys/ Girls 43/11 (80% / 20%) 24/14 (63% / 37%) 23/25 (48% / 52%) 90/50 (64% 36%) Age (Yrs) 7.25± ±4.11 8± ±3.95

4 Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), including spastic diplegic cerebral palsy (n=17), spastic quadriplegic cerebral palsy (n=8), athetoid cerebral palsy (n=7), infantile hemiplegic cerebral palsy (n=6). Among these 38 respondents 20 were fathers and 18 were mothers. The control group (C Group) had 48 normal healthy children with the mean age of 8±4.5 years with 23 boys and 25 boys in it. 25 fathers and 23 mothers were the respondents in this group. Comparison between parents of children with Autism Spectrum Disorder, Physical disability and controls When the total scores of QOL were analyzed there were significant change (p<0.001) were observed in all the three groups with the post hoc analysis showing that control group scored more than the physically disabled group which scored more than the autism spectrum disorder group. When each domains of the WHOQOL_BREF were individually analyzed (table 2), the Social and environmental health domain had significant differences among all the three groups (p<0.001). In the physical health and psychological health domain significant differences were observed between control group and autism spectrum disorder group and also between physical disability group and autism spectrum disorder group (p<0.001), however, nonsignificant differences were observed between control group and physical disability group. between these two groups on WHOQOL-BREF scale. Comparison of Quality of Life (WHOQOL-BREF) of parents based on the family type of children with Autism Spectrum Disorder There were 27 children living in nuclear family type and 27 children were living in joint family structure. Mean QOL total score of nuclear family type was ±33.73 and for joint family the score was ± Statistically no significance was found between the family type of children and the quality of life of their family. DISCUSSION Autism spectrum disorder is a unique developmental disorder because it has no specific biological marker and this leads to uncertain views about the prognosis of this condition 21. In this cross sectional study the level of quality of life of parents of children with autism spectrum disorder was measured and analyzed. In the group of children with autism spectrum disorder it was observed that the boys girls ratio was 4:1, this could be due to the fact that autism spectrum disorder is more seen in boys than girls. When the total scores of WHOQOL-BREF were analyzed across these three groups, results suggests of highly significant impairment Table-2: Comparison of Quality of Life (WHOQOL-BREF) between Parents of children with Autism Spectrum Disorder, Physical disability and controls QOL Domain ASD (n=54) PD (n=38) Control(n=48) F Significance Post Hoc Physical Health 52.41± ± ± P<0.001 C>ASD CP>ASD Psychological 66.57± ± ± P<0.001 C>ASD PD>ASD Social relationship 68.78± ± ± P<0.001 C>PD>ASD Environment 66.74± ± ± P<0.001 C>PD>ASD Total ± ± ± P<0.001 C>PD>ASD Comparison of Quality of Life of parents of children on different domains based on severity of ASD The autism spectrum disorder group was further analyzed based on their severity. There were no significant differences (p>0.05) observed based on the severity of autism spectrum disorder (Mild ASD n=16, mean total QOL score =256.25±32.07; Moderate ASD n=24, mean total QOL score =254.29±37.24; Severe ASD n=14, mean total QOL score = ±25.21). (p<0.001) in the quality of life of parent s of children with autism spectrum disorder than of physical disability or of normal healthy children. The quality of life impairment could be because parents of autism spectrum disorder children experience greater anxiety and tension than parents of non-disabled children 22. Previous study done by Kuhlthau (2010) on the health related quality of life mentions about worse on total score of HRQol compared to normative data from children with chronic conditions 23. Comparison of Quality of Life (WHOQOL-BREF) of parents based on gender of children with Autism Spectrum Disorder There were 13 boys and 11 girls in the ASD children. QOL life score was analyzed to find if gender had any impact on the quality of life. The mean total QOL score for boys were ±31.13 and ± Statistical analysis showed no significant difference The physical heath domain measures the participants energy level, sleep and satisfaction about their work capacity. It was found that parents with autism spectrum disorder indicated more impairment (p<0.001) in the physical health domain compared to physical disability group and control group. This could be due to the extra physical activities these parents had to do to for the regular and continues

5 management of their children often to many places. These physical activities include driving to the various training place, longer duration of waiting while the child undergoes therapy and imbalance in their own schedule. Significant impairment was also found in the psychological health domain of quality of life in the autism spectrum disorder group in comparison with other two groups. Researches show that parents of disabled children are more vulnerable to stress 21. One of the reasons found for the psychological impairment was confusion among the parents. They expressed confusion over the diagnosis due to inconsistence explanations given by various professionals. This could be due to the influence of cultural factor on the definition and recognition of symptom of autism 23 by professionals. The social relationship domain measured the personal relationship, social support and sexual activity of the parents. Group with parents of autism spectrum disorder had shown significant impairment (p<0.001) than the other two groups. Children with autism spectrum disorder have problem in social interaction including expressing affection towards parents and often these parents are denied of the fundamental rewards of parenthood 21. Many parents of children with autism spectrum disorder tried to avoid social situations like meeting friends and relatives to avoid embarrassments, and some felt stigmatized in public situations 24 due to the challenging behaviour shown by their children, in addition to this some parents also found lack of or absence of spouse support. The family support system of these children is also disturbed as relatives and friends often are not aware of the child s condition and avoid contact with the family In Indian context, many times elderly people consider autism as taboo and to be ashamed of, rather than providing support 25. These factors could have caused the low score in the social relationship domain of WHOQOL-BREF. Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), The environment domain of quality of life measured the financial resources, feeling of safety and security and home environment. Parent of children with autism spectrum disorder showed significant impairment in this domain (p<0.001) compared to control group and physically disabled group. The very long term care these children need and financial strain 26 these families experience could have caused the reduction in the environment domain of quality of life. In addition to this the problems associated with school services, stressful experience with professionals, worries about future including living arrangements and sexuality, ineffective services, unmet needs, poor coordination and communication among service providers 27 also could be influencing the environment domain of quality of life. In this study we further analyzed the quality of life scores with the severity of the autism spectrum disorder (table 3) to find if it had any effect on the life of families. Though there were no significant differences (p>0.05) in the quality of life score among parents based on the severity of the condition, still we found that the mild group had better WHOQOL BREF score (256.25±32.07) than the total mean score of moderate group (254.29±37.24) and the severe group (252.86±25.21). This might be due to the fact that irrespective of the nature of the condition, autism spectrum disorder influences the quality of life of family negatively. The differences in quality of life of parents of autism spectrum children based on their child s gender were also analyzed (table 4). Statistics shows no significant (p>0.05) change in the quality of life. This shows that every parent irrespective of gender of the child with autism spectrum disorder had impaired quality of life. We also tried to find if the family living nature (table 5) had any effect on the quality of life of families of children with autism spectrum disorder. There were no significant differences (p>0.05) among the Table-3: Comparison of Quality of Life (WHOQOL-BREF) of parents of children on different domains based on severity of Autism Spectrum Disorder QOL Domain Mild (n=16) Moderate(n=24) Severe (n=14) F Significance Post Hoc Physical Health 54.13± ± ± p>0.05 N.S Psychological 65.00± ± ± p>0.05 N.S Social Relationship68.81± ± ± p>0.05 N.S Environment 68.31± ± ± p>0.05 N.S Total ± ± ± p>0.05 N.S Table-4: Comparison of Quality of Life (WHOQOL-BREF) of parents based on gender of children with Autism Spectrum Disorder QOL Domain Boys (n=43) Girls(n=11) F Significance Physical Health 52.05± ± p>0.05 Psychological 65.72± ± p>0.05 Social Relationship 68.49± ± p>0.05 Environment 67.21± ± p>0.05 Total ± ± p>0.05 Table-5: Comparison of Quality of Life (WHOQOL-BREF) of parents based on the family type of children with Autism Spectrum Disorder QOL Domain Nuclear (n=27) Joint (n=27) F Significance Physical 51.11± ± p>0.05 Psychological 64.96± ± p>0.05 Social 68.07± ± p>0.05 Environmental 66.52± ± p>0.05 Total ± ± p>0.05

6 Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), scores of QOL between these two groups. But from the mean score we can conclude that families who lived in joint family had slightly better quality of life than those who lived in nuclear family style. The possible reason could be that in joint family other members share the work and also the child gets to interact with many members which in turn help them to improve their social behavior. The results of this study suggest that though the professionals work on the symptomatic management, it is also necessary to educate and support the parents throughout the process of diagnosis and management. Listening to the parents every concern and explaining the reason for the concern in the best possible scientific manner and involving parents in the treatment protocols also could be a best way to reduce their anxiety towards the outcome of intervention programs. Support in the form of reassurance and encouragement at every stage of process from diagnosis and treatment 21 shall also help to reduce the anxiety and stress in the family thus shall improve the quality of life. Professionals must also work to create government policies to support the parents. CONCLUSION In a country like India where people largely emphasize conformity to the social norms and value social relatedness, condition like autism spectrum disorder causes heavy impact on the quality of life of family. This study was conducted with the purpose of finding the quality of life of families of children with autism spectrum disorder and to compare it with the families with physically disabled children and normal children. It was found that families with autism spectrum disorder children had impaired quality of life than the other two groups. These results stress the need for broader intervention goals which also involves the families and to develop supportive programs for the families of children with autism spectrum disorder. LIMITATIONS This study had a broad aim of finding the quality of life of families and only one of parents was consider for the study. Further recommendation Detailed study to assess the influence of various factors including the age of the child, siblings status, duration since the diagnosis was made and number of interventions programs done for the child on the quality of life of families could be done in future. We also recommend finding the effectiveness of various social support programs for the families and their influence on their perception about quality of life. ACKNOWLEDGEMENT The authors would like to thank all the children who have participated in the study and their parents for their timely response. Authors also would like to express their gratitude to Dr. Gouri Passi, Dr. Rachana Gupta for their continuous support through this study. Authors also express thankfulness to Dr.Ganapathy Shankar and Mr.Christopher Amalraj for their support in statistical analysis. REFERENCES 1. Kanner L. Autistic disturbances of affective contact. Nervous Child. 1943; 2: p Kazdin AE. Encyclopedia of Psychology Washington, D.C.: American Psychological Association; APA APA. Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th edition, text revision) Washington DC, USA: American Psychiatric Association; 1994/Rev Phetrasuwan S. Psychological Adjustment in Mothers of Children with Autism Spectrum Disorder Chapel Hill: University of North Carolina; Fizman S, Wolf L. The handicapped Child Psychological Effects of Parental, marital and sibling relationships. Psych Clin North Am. 1991; 14: p Berill M, Brown I. Quality of Life for people with intellectual disabilities. Curr Opin Psych. 2006; 19: p Raina P, O Donnell M, Schwellinus H, Rosenbaum P, King G, Brehaut J, et al. Caregiving Process and CaregiverBurden: Conceptual Models to guide researchand practice. BMC Pediatrics. 2004; 4: p Vitaliano P, Zhang J, Scanlan J. Is caregiving hazardous to one s physical health :a meta-analysis. Psych Bull. 2003; 123: p Hastings RP, Johnson E. Stress in UK Families Conducting Intensive Home-BasedBehavioral Intervention for Their Young Child with Autism. Journal of Autism and Developmental Disorders. 2001; 31(3): p Fox L, Vaughn BJ, Wyatte ML, Dunlap G. We can t expect other people to understand :Family perspectives on problem behavior. Exceptional Children. 2002; 68: p Carr AJ, Higginson IJ. Measuring quality of life: Are quality of life measures patient centred? BMJ. 2001; 322: p Saxena S, Chandiramani K, Bhargava R. WHOQOL-Hindi: A questionnaire for assessing quality of life in health care settings in India. Natl Med J India. 1998; 11: p Lantos J. The Edge of the known world. Narrative Matters. 2007; 26(2): p Malhotra S, Vikas A. Pervasive Developmental Disorders: Indian Scene. JIACAM. 2005; 1(3). 15. NIMH I. [Online].; 2009 [cited 2014 Jan 14. Available from: HYPERLINK content&task=view&id=30&itemid=130" thenationaltrust.co.in/nt/index.php?option= com_content& task=view&id=30&itemid= NIMH. Indian Scale for Assessment of Autism: Test Manual. Secunderabad:; 2009.

7 17. Holden K, Gill M, Magliozzi MR. Gait Assessment for Neurologically ImpairedPatients: Standards for Outcome Assessment. PHYS THER. 1986; 66: p W.H.O. WHOQOL-BREF Introduction, Administration, Scoring and Generic Version of the Assessment. Geneva: WORLD HEALTH ORGANIZATION, Programme on Mental Health; WHO. The WHOQOL Group: WHOQOL user manual, and annexes IBM Corp. IBM SPSS Statistics for Windows, Version 20.0.; Gupta A, Singhal N. Psychosocial support for families of chidlren with autism. Asia Pacific Disability Rehabilitation Journal. 2005; 16(2): p Sander J, Morgan S. Family stress and adjustment as perceived by parents of children with autism or down syndrome: implication for intervention. Chil and family behaviour therapy. 1997; 19: p Vaithi Perumal et al. / Journal of Pharmacy Research 2014,8(6), Source of support: Nil, Conflict of interest: None Declared 23. Daley TC, Sigman MD. Diagnostic conceptualization of Autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders February; 32(1): p Gray D. Percpetions of stigma: The parents of autistic children. Sociology og health and illness. 1993; 15: p Malhotra S, Khan W, Bhatia MS. Quality of Life of Parents having Children with Developmental Disabilities. DELHI PSYCHIATRY JOURNAL April; 15(1): p Hall H. Families of children with autism:behaviours of children, community support and coping. Issues Compr Pediatr Nurs. 2012; 35(2): p Mugno D, Ruta L, D Arrigo GV, Mazzone L. Imapirment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and quality of life outcomes. 2007; 5(22).