Parental report of quality of life in autistic children and youths: the role of parents’ (informal) social support, and children’s active leisure time

References

• Abidin, R. R. 1992. The determinants of parenting behavior. Journal of Clinical Child Psychology, 21, 407–412.
   Web of Science ®Google Scholar
• Armstrong, M. I., Birnie-Lefcovitch, S. and Ungar, M. T. 2005. Pathways between social support, family well being, quality of parenting, and child resilience: what we know. Journal of Child and Family Studies, 14, 269–281.
   Google Scholar
• Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L. and Flynn, D. 2018. A systematic review of quality of life of adults on the autism spectrum. Autism, 22, 774–783.
   PubMed Web of Science ®Google Scholar
• Bennett, D. A. 2001. How can I deal with missing data in my study? Australian and New Zealand Journal of Public Health, 25, 464–469.
   PubMed Web of Science ®Google Scholar
• Chan, T. W. and Koo, A. 2011. Parenting style and youth outcomes in the UK. European Sociological Review, 27, 385–399.
   Web of Science ®Google Scholar
• Chiang, H.-M. and Wineman, I. 2014. Factors associated with quality of life in individuals with autism spectrum disorders: a review of literature. Research in Autism Spectrum Disorders, 8, 974–986.
   Web of Science ®Google Scholar
• Cholewicki, J., Drasgow, E. and Chezan, L. C. 2019. Parental perception of quality of life for children with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 31, 575–592.
   Web of Science ®Google Scholar
• Coales, C., Heaney, N., Ricketts, J., Dockrell, J. E., Lindsay, G., Palikara, O. and Charman, T. 2019. Health-related quality of life in children with autism spectrum disorders and children with developmental language disorders. Autism & Developmental Language Impairments, 4, 239694151985122.
   Google Scholar
• Corvey, K., Menear, K. S., Preskitt, J., Goldfarb, S. and Menachemi, N. 2016. Obesity, physical activity and sedentary behaviors in children with an autism spectrum disorder. Maternal and Child Health Journal, 20, 466–476.
   PubMed Web of Science ®Google Scholar
• Deater-Deckard, K. 2008. Parenting stress. New Haven: Yale University Press.
   Google Scholar
• Engelhardt, C. R. and Mazurek, M. O. 2014. Video game access, parental rules, and problem behavior: a study of boys with autism spectrum disorder. Autism, 18, 529–537.
   PubMed Web of Science ®Google Scholar
• Erel, O. and Burman, B. 1995. Interrelatedness of marital relations and parent-child relations: a meta-analytic review. Psychological Bulletin, 118, 108–132.
   PubMed Web of Science ®Google Scholar
• Greenglass, E. R. 1993. The contribution of social support to coping strategies. Applied Psychology, 42, 323–340.
   Web of Science ®Google Scholar
• Greenglass, E.R. 2002. Proactive coping. In: E. Frydenberg, ed. Beyond coping: Meeting goals, vision, and challenges. London, UK: Oxford University Press, pp.37–62.
   Google Scholar
• Hamm, J. and Yun, J. 2019. Influence of physical activity on the health-related quality of life of young adults with and without autism spectrum disorder. Disability and Rehabilitation, 41, 763–767.
   PubMed Web of Science ®Google Scholar
• Harter, S. 2015. The construction of the self: Developmental and sociocultural foundations. New York: Guilford Publications.
   Google Scholar
• Healy, S., Aigner, C. J., Haegele, J. A. and Patterson, F. 2019. Meeting the 24-hr movement guidelines: an update on US youth with autism spectrum disorder from the 2016 National Survey of Children’s Health. Autism Research, 12, 941–951.
   PubMed Web of Science ®Google Scholar
• Heaven, P. and Ciarrochi, J. 2008. Parental styles, gender and the development of hope and self-esteem. European Journal of Personality, 22, 707–724.
   Web of Science ®Google Scholar
• Hooper, D., Coughlan, J. and Mullen, M. R. 2008. Structural equation modelling: guidelines for determining model fit. Electronic Journal of Business Research Methods, 6, 53–60.
   Web of Science ®Google Scholar
• Hu, L.‐t. and Bentler, P. M. 1999. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.
   Web of Science ®Google Scholar
• Ikeda, E., Hinckson, E. and Krägeloh, C. 2014. Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Quality of Life Research, 23, 1069–1085.
   PubMed Web of Science ®Google Scholar
• Kamp-Becker, I., Schröder, J., Muehlan, H., Remschmidt, H., Becker, K. and Bachmann, C. J. 2011. Health-related quality of life in children and adolescents with autism spectrum disorder. Zeitschrift Fur Kinder- Und Jugendpsychiatrie Und Psychotherapie, 39, 123–131.
   PubMed Web of Science ®Google Scholar
• Karst, J. S. and van Hecke, A. V. 2012. Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15, 247–277.
   PubMed Web of Science ®Google Scholar
• Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C. and Pellicano, E. 2016. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20, 442–462.
   PubMed Web of Science ®Google Scholar
• Kermode, S. and MacLean, D. 2001. A study of the relationship between quality of life, self-esteem and health. Australian Journal of Advanced Nursing, 19, 33.
   PubMedGoogle Scholar
• Khanna, R., Jariwala-Parikh, K., West-Strum, D. and Mahabaleshwarkar, R. 2014. Health-related quality of life and its determinants among adults with autism. Research in Autism Spectrum Disorders, 8, 157–167.
   Web of Science ®Google Scholar
• Kliem, S., Lohmann, A., Mößle, T., Foran, H. M., Hahlweg, K., Zenger, M. and Brähler, E. 2019. Development and validation of a parenting scale short form (PS-8) in a representative population sample. Journal of Child and Family Studies, 28, 30–41.
   Web of Science ®Google Scholar
• Kliem, S., Mößle, T., Rehbein, F., Hellmann, D. F., Zenger, M. and Brähler, E. 2015. A brief form of the Perceived Social Support Questionnaire (F-SozU) was developed, validated, and standardized. Journal of Clinical Epidemiology, 68, 551–562.
   PubMed Web of Science ®Google Scholar
• Kline, R. B. 2015. Principles and practice of structural equation modeling. New York: Guilford Publications.
   Google Scholar
• Lasgaard, M., Nielsen, A., Eriksen, M. E. and Goossens, L. 2010. Loneliness and social support in adolescent boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 40, 218–226.
   PubMed Web of Science ®Google Scholar
• LaVesser, P. and Berg, C. 2011. Participation patterns in preschool children with an autism spectrum disorder. OTJR: Occupation, Participation, Health, 31, 33–39.
   Web of Science ®Google Scholar
• Lazarus, R. S. and Folkman, S. 1984. Stress, coping and appraisal. New York: Springer Publishing Company.
   Google Scholar
• Leiner, D. J. 2019. Too fast, too straight, too weird: non-reactive indicators for meaningless data in internet surveys. Survey Research Methods, 13, 229–248.
   Web of Science ®Google Scholar
• Little, R. J. A. 1988. Missing-Data Adjustments in Large Surveys. Journal of Business & Economic Statistics, 6, 287–296.
   Web of Science ®Google Scholar
• Manz, K., Schlack, R., Poethko-Müller, C., Mensink, G., Finger, J., Lampert, T. and Group, K. S. 2014. Körperlich-sportliche Aktivität und Nutzung elektronischer Medien im Kindes-und Jugendalter [Physical activity and electronic media use in children and adolescents: Results of the KiGGS study: First follow-up (KiGGS wave 1)]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz, 57, 840–848.
   PubMedGoogle Scholar
• Mattejat, F. and Remschmidt, H. 2006. ILK-Inventar zur Erfassung der Lebensqualität bei Kindern und Jugendlichen: Ratingbogen für Kinder, Jugendliche und Eltern: Manual [The Inventory of Life Quality in Children and Adolescents (ILC): Rating for children, adolescents and parents: manual]. Göttingen: Hogrefe.
   Google Scholar
• Mattejat, F. and Remschmidt, H. 1998. Das Inventar zur Erfassung der Lebensqualität bei Kindern und Jugendlichen (ILK) [The inventory of life quality in children and adolescents (ILC)]. Available at: <http://www.mentalhealthpromotion.net/resources/lq-art-2.pdf>
   Google Scholar
• McCoy, S. M. and Morgan, K. 2020. Obesity, physical activity, and sedentary behaviors in adolescents with autism spectrum disorder compared with typically developing peers. Autism, 24, 387–399.
   PubMed Web of Science ®Google Scholar
• McMahon, E. M., Corcoran, P., O’Regan, G., Keeley, H., Cannon, M., Carli, V., Wasserman, C., Hadlaczky, G., Sarchiapone, M., Apter, A., Balazs, J., Balint, M., Bobes, J., Brunner, R., Cozman, D., Haring, C., Iosue, M., Kaess, M., Kahn, J.-P. and Wasserman, D. 2016. Physical activity in European adolescents and associations with anxiety, depression and well-being. European Child & Adolescent Psychiatry.
   PubMed Web of Science ®Google Scholar
• Miranda, A., Mira, A., Berenguer, C., Rosello, B. and Baixauli, I. 2019. Parenting stress in mothers of children with autism without intellectual disability. mediation of behavioral problems and coping strategies. Frontiers in Psychology, 10, 464.
   PubMed Web of Science ®Google Scholar
• Mößle, T. 2012. “Dick, dumm, abhängig, gewalttätig?": Problematische Mediennutzungsmuster und ihre Folgen im Kindesalter; Ergebnisse des Berliner Längsschnitt Medien. (Fat, stupid, addicted, violent?” Problematic media usage behavior and its consequences in childhood. Results of the Berlin Longitudinal Study Media) (1. Aufl.). Interdisziplinäre Beiträge Zur Kriminologischen Forschung: Bd. 42, Nomos.
   Google Scholar
• Must, A., Phillips, S. M., Curtin, C., Anderson, S. E., Maslin, M., Lividini, K. and Bandini, L. G. 2014. Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism, 18, 376–384.
   PubMed Web of Science ®Google Scholar
• Nabi, R. L. and Krcmar, M. 2016. It takes two: the effect of child characteristics on U.S. parents’ motivations for allowing electronic media use. Journal of Children and Media, 10, 285–303.
   Web of Science ®Google Scholar
• Nunez-Smith, M., Wolf, E. and Huang, H. 2009. Media + child and adolescent health: a systematic review. San Francisco: Common Sense Media.
   Google Scholar
• Obrusnikova, I. and Miccinello, D. L. 2012. Parent perceptions of factors influencing after-school physical activity of children with autism spectrum disorders. Adapted Physical Activity Quarterly : APAQ, 29, 63–80.
   PubMed Web of Science ®Google Scholar
• Omorou, A. Y., Langlois, J., Lecomte, E., Briancon, S. and Vuillemin, A. 2016. Cumulative and bidirectional association of physical activity and sedentary behaviour with health-related quality of life in adolescents. Quality of Life Research, 25, 1169–1178.
   PubMed Web of Science ®Google Scholar
• Osborne, L. A. and Reed, P. 2010. Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Research in Autism Spectrum Disorders, 4, 405–414.
   Web of Science ®Google Scholar
• Pan, C.-Y. and Frey, G. C. 2006. Physical activity patterns in youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 36, 597–606.
   PubMed Web of Science ®Google Scholar
• Ponterotto, J. G. and Ruckdeschel, D. E. 2007. An overview of coefficient alpha and a reliability matrix for estimating adequacy of internal consistency coefficients with psychological research measures. Perceptual and Motor Skills, 105, 997–1014.
   PubMed Web of Science ®Google Scholar
• Przybylski, A. K. and Weinstein, N. 2017a. Digital screen time limits and young children’s psychological well-being: evidence from a population-based study. Child Development, 90, e56–e65.
   PubMed Web of Science ®Google Scholar
• Przybylski, A. K. and Weinstein, N. 2017b. A large-scale test of the goldilocks hypothesis: quantifying the relations between digital-screen use and the mental well-being of adolescents. Psychological Science, 28, 204–215.
   PubMed Web of Science ®Google Scholar
• R Core Team. 2019. R: A language and environment for statistical computing. Available at: <https://www.eea.europa.eu/data-and-maps/indicators/oxygen-consuming-substances-in-rivers/r-development-core-team-2006>
   Google Scholar
• Ravens-Sieberer, U. 2003. Der Kindl-R-Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen – Revidierte Form [KINDL-R questionnaire for measuring health-related quality of life in children and adolescents—Revised version] [KINDL-R questionnaire for measuring health-related quality of life in children and adolescents—Revised version]. Available at: <https://www.kindl.org/deutsch/manual/>
   Google Scholar
• Rhemtulla, M., Brosseau-Liard, P. É. and Savalei, V. 2012. When can categorical variables be treated as continuous? A comparison of robust continuous and categorical SEM estimation methods under suboptimal conditions. Psychological Methods, 17, 354–373.
   PubMed Web of Science ®Google Scholar
• Robert-Koch-Institut. 2011. KiGGS–Kinder-und Jugendgesundheitsstudie Welle 1. Projektbeschreibung [[KiGGS-study on health of children and adolescents wave 1. Project description]]. Beiträge zur Gesundheitsberichterstattung des Bundes. RKI. Available at: <https://www.rki.de/DE/Content/Gesundheitsmonitoring/Gesundheitsberichterstattung/GBEDownloadsB/KiGGS_welle1.pdf?__blob=publicationFile>
   Google Scholar
• Rosseel, Y. 2012. Lavaan: An R package for structural equation modeling and more. Version 0.5–12 (BETA). Journal of Statistical Software, 48, 1–36.
   Web of Science ®Google Scholar
• Rotheram-Fuller, E., Kasari, C., Chamberlain, B. and Locke, J. 2010. Social involvement of children with autism spectrum disorders in elementary school classrooms. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 51, 1227–1234.
   PubMed Web of Science ®Google Scholar
• Saha, R., Huebner, E. S., Hills, K. J., Malone, P. S. and Valois, R. F. 2014. Social coping and life satisfaction in adolescents. Social Indicators Research, 115, 241–252.
   Web of Science ®Google Scholar
• Shane, H. C. and Albert, P. D. 2008. Electronic screen media for persons with autism spectrum disorders: results of a survey. Journal of Autism and Developmental Disorders, 38, 1499–1508.
   PubMed Web of Science ®Google Scholar
• Shi, D. and Maydeu-Olivares, A. 2020. The effect of estimation methods on SEM fit indices. Educational and Psychological Measurement, 80, 421–445.
   PubMed Web of Science ®Google Scholar
• Shields, N., Synnot, A. J. and Barr, M. 2012. Perceived barriers and facilitators to physical activity for children with disability: a systematic review. British Journal of Sports Medicine, 46, 989–997.
   PubMed Web of Science ®Google Scholar
• Smith, B. J., Grunseit, A., Hardy, L. L., King, L., Wolfenden, L. and Milat, A. 2010. Parental influences on child physical activity and screen viewing time: a population based study. BMC Public Health, 10, 593.
   PubMed Web of Science ®Google Scholar
• Stiller, A. and Mößle, T. 2018. Media use among children and adolescents with autism spectrum disorder: a systematic review. Review Journal of Autism and Developmental Disorders, 5, 227–246.
   Web of Science ®Google Scholar
• Stiller, A. and Neumann, M. 2021. Freizeitangebote für autistische Kinder und Jugendliche: Wie zufrieden sind Eltern und was wünschen sie sich für ihre Kinder? Praxis Der Kinderpsychologie Und Kinderpsychiatrie, 70, 217–238.
   PubMedGoogle Scholar
• Stiller, A., Weber, J., Strube, F. and Mößle, T. 2019. Caregiver reports of screen time use of children with autism spectrum disorder: a qualitative study. Behavioral Sciences, 2019. 9, 56.
   Web of Science ®Google Scholar
• Stone, A. A., Schwartz, J. E., Broderick, J. E. and Deaton, A. 2010. A snapshot of the age distribution of psychological well-being in the United States. Proceedings of the National Academy of Sciences of the United States of America, 107, 9985–9990.
   PubMed Web of Science ®Google Scholar
• Taber, K. S. 2018. The use of Cronbach’s alpha when developing and reporting research instruments in science education. Research in Science Education, 48, 1273–1296.
   Web of Science ®Google Scholar
• Thompson, R. A. 2015. Social support and child protection: lessons learned and learning. Child Abuse & Neglect, 41, 19–29.
   PubMed Web of Science ®Google Scholar
• Toscano, C. V. A., Carvalho, H. M. and Ferreira, J. P. 2018. Exercise effects for children with autism spectrum disorder: metabolic health, autistic traits, and quality of life. Perceptual and Motor Skills, 125, 126–146.
   PubMed Web of Science ®Google Scholar
• Tremblay, M. S., Leblanc, A. G., Kho, M. E., Saunders, T. J., Larouche, R., Colley, R. C., Goldfield, G. and Connor Gorber, S. 2011. Systematic review of sedentary behaviour and health indicators in school-aged children and youth. The International Journal of Behavioral Nutrition and Physical Activity, 8, 98.
   PubMed Web of Science ®Google Scholar
• Trost, S. G. and Loprinzi, P. D. 2011. Parental influences on physical activity behavior in children and adolescents: a brief review. American Journal of Lifestyle Medicine, 5, 171–181.
   Google Scholar
• Tröster, H. and Lange, S. 2019. Eltern von Kindern mit Autismus-Spektrum-Störungen: Anforderungen, Belastungen und Ressouren. [Parents of children with ASD: Challenges, burdens and ressources]. Berlin: Springer Fachmedien.
   Google Scholar
• Twenge, J. M. and Campbell, W. K. 2018. Associations between screen time and lower psychological well-being among children and adolescents: Evidence from a population-based study. Preventive Medicine Reports, 12, 271–283.
   PubMedGoogle Scholar
• van Buuren, S. and Groothuis-Oudshoorn, K. 2011. mice: Multivariate imputation by chained equations in R. Journal of Statistical Software, 45, 1–68.
   Web of Science ®Google Scholar
• Vandewater, E. A., Park, S. E., Huang, X. and Wartella, E. A. 2005. No: you can’t watch that – parental rules and young children’s media use. American Behavioral Scientist, 48, 608–623.
   Web of Science ®Google Scholar
• WHO. 2012. WHOQOL user manual. Available at: <https://www.who.int/toolkits/whoqol>
   Google Scholar
• Xu, H., Wen, L. M. and Rissel, C. 2015. Associations of parental influences with physical activity and screen time among young children: a systematic review. Journal of Obesity, 2015, 546925.
   PubMed Web of Science ®Google Scholar
• Yao, C. A. and Rhodes, R. E. 2015. Parental correlates in child and adolescent physical activity: a meta-analysis. The International Journal of Behavioral Nutrition and Physical Activity, 12, 10.
   PubMed Web of Science ®Google Scholar
• Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I. M., Szatmari, P., Bryson, S., Fombonne, E., Volden, J., Waddell, C., Zwaigenbaum, L., Georgiades, S., Bennett, T., Elsabaggh, M. and Thompson, A. 2017. Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism, 21, 155–166.
   PubMed Web of Science ®Google Scholar