Quality of live among parents of children with autism spectrum disorders in tunisia

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Published Sep 4, 2018
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Vol. 96 No. 3 (2018): Issue Mar 2018

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Imen Chaabène
Soumeyya Halayem
Ali Mrabet
Melek Hajri
Asma Bouden

Abstract

Background: Studies on parents of children with autistic spectrum disorders’ (ASD) quality of life (QOL) agree on its alteration and seek to identify risk factors in order to target interventions.
Aims: To study the QOL of a Tunisian population of parents of children with ASD and to look for risk factors specific to the Tunisian population.
Methods: We conducted a cross-sectional descriptive study of 50 parents of 50 children who met the DSM V criteria for autism spectrum disorder. A pre-established record was used to collect the biographical and clinical data. The severity of autism was determined using CARS. The SF-36, validated in Tunisia, made it possible to assess the QOL of the parents.
Results: The proportion of parents with impaired QOL was 64%. The average mental score was lower than the average physical summary score. Aggressiveness was the predominant factor that significantly altered parents' QOL at the total SF-36 score (p=0,03) and 5-dimensional levels (0.006 <p <0.05), followed by the severity of autism that significantly altered QOL at the total SF-36 score (p=0.047) and  the 2-dimensional level (0.001 < p < 0.005), the position of the child with autism as a cadet (p = 0.03), the high number of siblings (p = 0.01), and conjugal conflicts (p = 0.02).
The factors significantly associated with better QOL were the acquisition of a sphincter autonomy (0.02 <p <0.025) and a communicative language (0.023 <p <0.038), the older age of the child at the moment of the diagnosis (P =0 .004), school integration (p = 0.04), mothers' occupational activity (p = 0.003) and housing in urban areas (p = 0.036).

Conclusion: This study illustrates the importance of clinical factors in influencing parents' quality of life in order to advocate for measures to support them and to promote their quality of life, which in turn has positive impacts on the family climate.

Keywords:

Autism spectrum disorder, quality of life, parents, child

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References

  1. Baghdadli A, Pry R, Michelon C, Rattaz C. Impact of autism in adolescents on parental quality of life. Qual Life Res 2014;23(6):1859-68.
  2. Tekinarslan IC. A comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and autism spectrum disorder. Psychol Rep 2013;112(1):266-87.
  3. Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, et al. Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. J Autism Dev Disord 2014;44(8):1933-45.
  4. Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of life Research 2004;13(2):299-310.
  5. Obeid R, Daou N. The effects of coping style, social support, and behavioral problems on the well-being of mothers of children with autism spectrum disorders in Lebanon. Research in Autism Spectrum Disorders 2015;10:59-70.
  6. Kheir NM, Ghoneim OM, Sandridge AL, Hayder SA, Al-Ismail MS, Al-Rawi F. Concerns and considerations among caregivers of a child with autism in Qatar. BMC research notes 2012;5(1):290.
  7. Dardas LA, Ahmad MM. Quality of life among parents of children with autistic disorder: A sample from the Arab world. Research in Developmental Disabilities 2014;35(2):278-87.
  8. Mugno D, Ruta L, D'Arrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007;5:22.
  9. Dardas LA, Ahmad MM. Predictors of quality of life for fathers and mothers of children with autistic disorder. Res Dev Disabil 2014;35(6):1326-33.
  10. Guermazi M, Allouch C, Yahia M, Huissa T, Ghorbel S, Damak J, et al. Translation in Arabic, adaptation and validation of the SF-36 Health Survey for use in Tunisia. Annals of physical and rehabilitation medicine 2012;55(6):388-403.
  11. Schopler E, Reichler RJ, DeVellis RF, Daly K. Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). Journal of autism and developmental disorders 1980;10(1):91-103.
  12. Sabbah I, Drouby N, Sabbah S, Retel-Rude N, Mercier M. Quality of life in rural and urban populations in Lebanon using SF-36 health survey. Health and quality of life outcomes 2003;1(1):30.
  13. Leplège A, Ecosse E, Coste J, Pouchot J, Perneger T. Le questionnaire MOS SF-36: Manuel de l'utilisateur et guide d'interprétation des scores: De Boeck Secundair; 2001.
  14. Lam CL, Eileen Y, Gandek B, Fong DY. The SF-36 summary scales were valid, reliable, and equivalent in a Chinese population. Journal of clinical epidemiology 2005;58(8):815-22.
  15. Ware JE, Keller SD, Kosinski M. SF-36: Physical and mental health summary scales: A user's manual: Health Assessment Lab; 1994.
  16. Beaud L, Quentel J-C, editors. Information et vécu parental du diagnostic de l'autisme II. Effets des troubles et qualité de vie. Annales Médico-psychologiques, revue psychiatrique; 2011: Elsevier.
  17. Cappe É, Wolff M, Bobet R, Adrien J-L. Étude de la qualité de vie et des processus d'ajustement des parents d'un enfant ayant un trouble autistique ou un syndrome d'Asperger: effet de plusieurs variables socio-biographiques parentales et caractéristiques liées à l'enfant. L'Évolution psychiatrique 2012;77(2):181-99.
  18. Ji B, Zhao I, Turner C, Sun M, Yi R, Tang S. Predictors of health-related quality of life in Chinese caregivers of children with autism spectrum disorders: a cross-sectional study. Archives of psychiatric nursing 2014;28(5):327-32.
  19. McStay R, Trembath D, Dissanayake C. Raising a child with autism: A developmental perspective on family adaptation. Current Developmental Disorders Reports 2015;2(1):65-83.
  20. Lee L-C, Harrington RA, Louie BB, Newschaffer CJ. Children with autism: Quality of life and parental concerns. Journal of autism and developmental disorders 2008;38(6):1147-60.
  21. Braunstein VL, Peniston N, Perelman A, Cassano MC. The inclusion of fathers in investigations of autistic spectrum disorders. Research in Autism Spectrum Disorders 2013;7(7):858-65.
  22. Seymour M, Wood C, Giallo R, Jellett R. Fatigue, stress and coping in mothers of children with an autism spectrum disorder. Journal of Autism and Developmental Disorders 2013;43(7):1547-54.
  23. Montes G, Halterman JS. Child care problems and employment among families with preschool-aged children with autism in the United States. Pediatrics 2008;122(1):e202-e8.
  24. Zuckerman KE, Lindly OJ, Bethell CD, Kuhlthau K. Family impacts among children with autism spectrum disorder: the role of health care quality. Academic pediatrics 2014;14(4):398-407.
  25. Howlin P. Living with impairment: The effects on children of having an autistic sibling. Child: care, health and development 1988;14(6):395-408.
  26. Dailly F, Goussé V. Adolescence et parentalité dans les troubles du spectre autistique: comment font face les parents? Pratiques psychologiques 2011;17(4):329-40.
  27. Veyssière A, Bernadoy C, Dagot L, Goussé V. Étude qualitative de l'évolution des stratégies de faire face chez les parents d'adolescents atteints de troubles autistiques. Pratiques psychologiques 2010;16(3):239-48.
  28. Myers BJ, Mackintosh VH, Goin-Kochel RP. “My greatest joy and my greatest heart ache:” Parents' own words on how having a child in the autism spectrum has affected their lives and their families' lives. Research in Autism Spectrum Disorders 2009;3(3):670-84.
  29. McStay RL, Dissanayake C, Scheeren A, Koot HM, Begeer S. Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism 2014;18(5):502-10.
  30. Tung L-C, Huang C-Y, Tseng M-H, Yen H-C, Tsai Y-P, Lin Y-C, et al. Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism. Research in Autism Spectrum Disorders 2014;8(9):1235-42.
  31. Delahaye J, Kovacs E, Sikora D, Hall TA, Orlich F, Clemons TE, et al. The relationship between Health-Related Quality of Life and sleep problems in children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders 2014;8(3):292-303.
  32. Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, et al. Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders 2014;8(10):1339-50.
  33. Walsh CE, Mulder E, Tudor ME. Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Research in Autism Spectrum Disorders 2013;7(2):256-64.
  34. Lecavalier L, Leone S, Wiltz J. The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research 2006;50(3):172-83.
  35. Cappe É, editor Effet de l'inclusion sociale et scolaire sur le processus d'ajustement et la qualité de vie des parents d'un enfant présentant un trouble du spectre autistique. Annales Médico-psychologiques, revue psychiatrique; 2012: Elsevier.
  36. Hoogsteen L. The lived experience of parenting a child with autism in a rural area: making the invisible, visible: University of Manitoba (Canada); 2011.
  37. Ben AA, Halayem S, Touati M, Belhadj A, Gouider R, Mrad R, et al. Parental satisfaction of an assessment unit for autistic spectrum disorders. La Tunisie medicale 2016;94(6):167-72.