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28-06-2022 | Original Paper

Characterizing Accommodations by Parents of Young Children with Autism: A Mixed Methods Analysis

Auteurs: Yael G. Dai, Alice S. Carter

Gepubliceerd in: Journal of Autism and Developmental Disorders

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Abstract

Symptoms of autism influence families’ participation in daily activities, but few studies have broadly explored the types of accommodations caregivers make to their family’s routines after their child is diagnosed with autism. The current study used a mixed-methods approach to characterize the rate and types of accommodations made by 171 families and the child and family characteristics that predicted accommodations. Most families (91%) endorsed making accommodations in the past year. Lower income, older child age, marginalized racial/ethnic identity, and higher levels of child problem behavior predicted accommodations in a greater number of domains. Thematic analysis illuminated the types of accommodations caregivers made and their motivation for making these lifestyle adjustments. Findings have important implications for parent-mediated interventions and policy.
Literatuur
go back to reference Almalki, S. (2016). Integrating quantitative and qualitative data in mixed methods research–challenges and benefits. Journal of Education and Learning, 5(3), 288–296 Almalki, S. (2016). Integrating quantitative and qualitative data in mixed methods research–challenges and benefits. Journal of Education and Learning, 5(3), 288–296
go back to reference Baldridge, D. C., Beatty, J. E., Konrad, A. M., & Moore, M. E. (2016). People with disabilities. In The Oxford Handbook of Diversity in Organizations Baldridge, D. C., Beatty, J. E., Konrad, A. M., & Moore, M. E. (2016). People with disabilities. In The Oxford Handbook of Diversity in Organizations
go back to reference Bauman, M. L. (2010). Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics 7(3), 320–327 Bauman, M. L. (2010). Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics 7(3), 320–327
go back to reference Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M. … Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. JAMA, 313(15), 1524–1533 Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M. … Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. JAMA, 313(15), 1524–1533
go back to reference Bernheimer, L. P., Gallimore, R., & Weisner, T. S. (1990).Ecocultural theory as a context for the individual family service plan.Journal of Early Intervention, 14(3),219–233 Bernheimer, L. P., Gallimore, R., & Weisner, T. S. (1990).Ecocultural theory as a context for the individual family service plan.Journal of Early Intervention, 14(3),219–233
go back to reference Buescher, A. V. S., Cidav, Z., Knapp, M., et al. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. Journal of the American Medical Association Pediatrics 168:721–728 Buescher, A. V. S., Cidav, Z., Knapp, M., et al. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. Journal of the American Medical Association Pediatrics 168:721–728
go back to reference Carter, A. S., Briggs-Gowan, M. J., Jones, S. M., & Little, T. D. (2003).The Infant-Toddler Social and Emotional Assessment, I. T. S. E. A. : Factor Structure, Reliability, and Validity. Journal of Abnormal Child Psychology, 31,495–514 Carter, A. S., Briggs-Gowan, M. J., Jones, S. M., & Little, T. D. (2003).The Infant-Toddler Social and Emotional Assessment, I. T. S. E. A. : Factor Structure, Reliability, and Validity. Journal of Abnormal Child Psychology, 31,495–514
go back to reference Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012).Implications of childhood autism for parental employment and earnings. Pediatrics 129:617–623 Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012).Implications of childhood autism for parental employment and earnings. Pediatrics 129:617–623
go back to reference Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics.Journal of Autism and Developmental Disorders, 38(7): 1278–1291 Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics.Journal of Autism and Developmental Disorders, 38(7): 1278–1291
go back to reference DeGrace, B. W. (2004). The everyday occupation of families with children with autism. The American Journal of Occupational Therapy 58(5): 543–550 DeGrace, B. W. (2004). The everyday occupation of families with children with autism. The American Journal of Occupational Therapy 58(5): 543–550
go back to reference Feldman, I., Koller, J., Lebowitz, E. R., Shulman, C., & Itzchak, E. B. (2019). & Zachor, D. A. Family accommodation in autism spectrum disorder.Journal of Autism and Developmental Disorders, 49(9): 3602–3610 Feldman, I., Koller, J., Lebowitz, E. R., Shulman, C., & Itzchak, E. B. (2019). & Zachor, D. A. Family accommodation in autism spectrum disorder.Journal of Autism and Developmental Disorders, 49(9): 3602–3610
go back to reference Fletcher, P. C., Markoulakis, R., & Bryden, P. J. (2012).The costs of caring for a child with an autism spectrum disorder. Issues in Comprehensive Pediatric Nursing, 35(1),45–69 Fletcher, P. C., Markoulakis, R., & Bryden, P. J. (2012).The costs of caring for a child with an autism spectrum disorder. Issues in Comprehensive Pediatric Nursing, 35(1),45–69
go back to reference Fronczek, P. (2009). Income, earnings, and poverty from the 2004 American Community Survey. DIANE Publishing. Fronczek, P. (2009). Income, earnings, and poverty from the 2004 American Community Survey. DIANE Publishing.
go back to reference Gallimore, R., Coots, J., Weisner, T., Garnier, H., & Guthrie, D. (1996). Family responses to children with early developmental delays II: Accommodation intensity and activity in early and middle childhood. American Journal on Mental Retardation, 101, 215–232 Gallimore, R., Coots, J., Weisner, T., Garnier, H., & Guthrie, D. (1996). Family responses to children with early developmental delays II: Accommodation intensity and activity in early and middle childhood. American Journal on Mental Retardation, 101, 215–232
go back to reference Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’:. Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6),734–749 Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’:. Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6),734–749
go back to reference Hartley, S. L., Sikora, D. M., & McCoy, R. Prevalence and risk factors of maladaptive behaviour in Young children with autistic disorder (2008). J Intellect Disabil Res. 52(10):819–829 Hartley, S. L., Sikora, D. M., & McCoy, R. Prevalence and risk factors of maladaptive behaviour in Young children with autistic disorder (2008). J Intellect Disabil Res. 52(10):819–829
go back to reference IBM Corp (2021). IBM SPSS statistics for Macintosh (Version 28.0) IBM Corp (2021). IBM SPSS statistics for Macintosh (Version 28.0)
go back to reference Kagan, E. R., Frank, H. E., & Kendall, P. C. (2017). Accommodation in youth with OCD and anxiety. Clinical Psychology :Science and Practice, 24(1),78 Kagan, E. R., Frank, H. E., & Kendall, P. C. (2017). Accommodation in youth with OCD and anxiety. Clinical Psychology :Science and Practice, 24(1),78
go back to reference Kielinen, M., Rantala, H., Timonen, E., Linna, S. L., & Moilanen, I. (2004). Associated medical disorders and disabilities in children with autistic disorder: a population-based study. Autism, 8(1),49–60 Kielinen, M., Rantala, H., Timonen, E., Linna, S. L., & Moilanen, I. (2004). Associated medical disorders and disabilities in children with autistic disorder: a population-based study. Autism, 8(1),49–60
go back to reference Lebowitz, E. R., & Bloch, M. (2012). Family accommodation in pediatric obsessive-compulsive disorder. Expert Review of Neurotherapeutics, 12(2),229–238 Lebowitz, E. R., & Bloch, M. (2012). Family accommodation in pediatric obsessive-compulsive disorder. Expert Review of Neurotherapeutics, 12(2),229–238
go back to reference Lebowitz, E. R., Scharfstein, L. A., & Jones, J. (2014b). Comparing family accommodation in pediatric obsessive-compulsive disorder, anxiety disorders, and nonanxious children.Depression and Anxiety, 31(12),1018–1025 Lebowitz, E. R., Scharfstein, L. A., & Jones, J. (2014b). Comparing family accommodation in pediatric obsessive-compulsive disorder, anxiety disorders, and nonanxious children.Depression and Anxiety, 31(12),1018–1025
go back to reference Lebowitz, E. R., Woolston, J., Bar-Haim, Y., Calvocoressi, L., Dauser, C., Warnick,E., … Leckman, J. F. (2013) Family accommodation in pediatric anxiety disorders. Depression and Anxiety, 30(1),47–54 Lebowitz, E. R., Woolston, J., Bar-Haim, Y., Calvocoressi, L., Dauser, C., Warnick,E., … Leckman, J. F. (2013) Family accommodation in pediatric anxiety disorders. Depression and Anxiety, 30(1),47–54
go back to reference Levitt, H. M., Bamberg, M., Creswell, J. W., Frost, D. M., & Josselson, R. (2018). & Suárez-Orozco, C. Journal article reporting standards for qualitative primary, qualitative meta-analytic,and mixed methods research in psychology: The APA Publications and Communications Board task force report. American Psychologist, 73(1),26 Levitt, H. M., Bamberg, M., Creswell, J. W., Frost, D. M., & Josselson, R. (2018). & Suárez-Orozco, C. Journal article reporting standards for qualitative primary, qualitative meta-analytic,and mixed methods research in psychology: The APA Publications and Communications Board task force report. American Psychologist, 73(1),26
go back to reference Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., & Lainhart (2006). J. E. Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36(7),849–861 Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., & Lainhart (2006). J. E. Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36(7),849–861
go back to reference Lord, C., Risi, S., Lambrecht, L., Cook, E., Leventhal, B., DiLavore, P. … Rutter, M. (2000). The Autism Diagnostic Observation Schedule – Generic:A standard measure of social and communication deficits associated with the spectrum of autism.Journal of Autism and Developmental Disorders, 30, 205-223 Lord, C., Risi, S., Lambrecht, L., Cook, E., Leventhal, B., DiLavore, P. … Rutter, M. (2000). The Autism Diagnostic Observation Schedule – Generic:A standard measure of social and communication deficits associated with the spectrum of autism.Journal of Autism and Developmental Disorders, 30, 205-223
go back to reference Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism Diagnostic Interview – Revised:A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659–685 Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism Diagnostic Interview – Revised:A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659–685
go back to reference Ludlow, A., Skelly, C., & Rohleder, P. (2011). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health & Psychology, 17(5), 702–711. doi:10.1177/1359105311422955 Ludlow, A., Skelly, C., & Rohleder, P. (2011). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health & Psychology, 17(5), 702–711. doi:10.1177/1359105311422955
go back to reference Marquenie, K., Rodger, S., Mangohig, K., & Cronin, A. (2011). Dinnertime and bedtime routines and rituals in families with a young child with an autism spectrum disorder. Australian Occupational Therapy Journal, 58. (3), 145–154. doi:10.1111/j.1440-1630.2010.00896.x Marquenie, K., Rodger, S., Mangohig, K., & Cronin, A. (2011). Dinnertime and bedtime routines and rituals in families with a young child with an autism spectrum disorder. Australian Occupational Therapy Journal, 58. (3), 145–154. doi:10.1111/j.1440-1630.2010.00896.x
go back to reference Mathew, N. E., Burton, K. L., Schierbeek, A., Črnčec, R., Walter, A., & Eapen, V.(2019). Parenting preschoolers with autism: Socioeconomic influences on wellbeing and sense of competence. World Journal of Psychiatry, 9(2), 30 Mathew, N. E., Burton, K. L., Schierbeek, A., Črnčec, R., Walter, A., & Eapen, V.(2019). Parenting preschoolers with autism: Socioeconomic influences on wellbeing and sense of competence. World Journal of Psychiatry, 9(2), 30
go back to reference Maul, C. A., & Singer, G. H. (2009). “Just good different things” specific accommodations families make to positively adapt to their children with developmental disabilities. Topics in Early Childhood Special Education, 29(3), 155–170 Maul, C. A., & Singer, G. H. (2009). “Just good different things” specific accommodations families make to positively adapt to their children with developmental disabilities. Topics in Early Childhood Special Education, 29(3), 155–170
go back to reference Mazumder, R., & Thompson-Hodgetts, S. (2019). Stigmatization of children and adolescents with autism spectrum disorders and their families: A scoping study. Review Journal of Autism and Developmental Disorders, 6(1), 96–107. Mazumder, R., & Thompson-Hodgetts, S. (2019). Stigmatization of children and adolescents with autism spectrum disorders and their families: A scoping study. Review Journal of Autism and Developmental Disorders, 6(1), 96–107.
go back to reference Mazurek MO, Kanne SM, Wodka EL. Physical aggression in children and adolescents with Autism spectrum disorders. Res Autism Spectrum Disorders. 2013; 7:455–465. Mazurek MO, Kanne SM, Wodka EL. Physical aggression in children and adolescents with Autism spectrum disorders. Res Autism Spectrum Disorders. 2013; 7:455–465.
go back to reference McCourt, C. (2006). Becoming a parent. The New Midwifery: Science and Sensitivity in Practice. Edinburgh: Churchill Livingstone, 49–71 McCourt, C. (2006). Becoming a parent. The New Midwifery: Science and Sensitivity in Practice. Edinburgh: Churchill Livingstone, 49–71
go back to reference Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273–285. doi:10.1177/1362361399003003005 Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273–285. doi:10.1177/1362361399003003005
go back to reference Munroe, K., Hammond, L., & Cole, S. (2016). The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: An interpretive phenomenological analysis. Disability & Society, 31(6), 798–819. Munroe, K., Hammond, L., & Cole, S. (2016). The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: An interpretive phenomenological analysis. Disability & Society, 31(6), 798–819.
go back to reference Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a child with an autism spectrum disorder: Public perceptions and parental conceptualizetions. Journal of Family and Social Work, 14(3), 208. –225. doi:1 0.1080/10522158.2011.571539 Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a child with an autism spectrum disorder: Public perceptions and parental conceptualizetions. Journal of Family and Social Work, 14(3), 208. –225. doi:1 0.1080/10522158.2011.571539
go back to reference Norman, K. R., Silverman, W. K., & Lebowitz, E. R. (2015). Family accommodation of child and adolescent anxiety: Mechanisms, assessment, and treatment. Journal of Child and Adolescent Psychiatric Nursing, 28(3), 131–140. Norman, K. R., Silverman, W. K., & Lebowitz, E. R. (2015). Family accommodation of child and adolescent anxiety: Mechanisms, assessment, and treatment. Journal of Child and Adolescent Psychiatric Nursing, 28(3), 131–140.
go back to reference Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews, 4, CD009774.https://​doi.​org/​10.​1002/​14651858.​CD009774.​pub2.​ Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews, 4, CD009774.https://​doi.​org/​10.​1002/​14651858.​CD009774.​pub2.​
go back to reference Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual Developmental Disabilities, 37(4), 294–302. doi:10.3109/13668250.2012.736614 Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual Developmental Disabilities, 37(4), 294–302. doi:10.3109/13668250.2012.736614
go back to reference Saxbe, D., Rossin-Slater, M., & Goldenberg, D. (2018). The transition to parenthood as a critical window Saxbe, D., Rossin-Slater, M., & Goldenberg, D. (2018). The transition to parenthood as a critical window
go back to reference for adult health. American Psychologist, 73(9), 1190. for adult health. American Psychologist, 73(9), 1190.
go back to reference Seltzer, M. M., Greenberg, J. S., Floyd, F. J., & Hong, J. (2004). Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities. American Journal of Orthopsychiatry, 74(2), 187–195. Seltzer, M. M., Greenberg, J. S., Floyd, F. J., & Hong, J. (2004). Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities. American Journal of Orthopsychiatry, 74(2), 187–195.
go back to reference Schaaf RC, Toth-Cohen S, Johnson SL, et al. (2011) The every- day routines of families of children with autism: examining the impact of sensory processing difficulties on the family. Autism 15: 373–389. Schaaf RC, Toth-Cohen S, Johnson SL, et al. (2011) The every- day routines of families of children with autism: examining the impact of sensory processing difficulties on the family. Autism 15: 373–389.
go back to reference Schnabel, L., & Bock, S. (2017). The persistent and exceptional intensity of American religion: A response to recent research. Sociological Science, 4, 686–700. Schnabel, L., & Bock, S. (2017). The persistent and exceptional intensity of American religion: A response to recent research. Sociological Science, 4, 686–700.
go back to reference Schuck, R. K., Tagavi, D. M., Baiden, K. M., Dwyer, P., Williams, Z. J., Osuna, A.,… Vernon, T. W. (2021). Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. Journal of Autism and Developmental Disorders, 1–21. Schuck, R. K., Tagavi, D. M., Baiden, K. M., Dwyer, P., Williams, Z. J., Osuna, A.,… Vernon, T. W. (2021). Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. Journal of Autism and Developmental Disorders, 1–21.
go back to reference Shalev, R. A., Lavine, C., & Di Martino, A. (2020). A systematic review of the role of parent characteristics in parent-mediated interventions for children with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 32(1), 1–21. Shalev, R. A., Lavine, C., & Di Martino, A. (2020). A systematic review of the role of parent characteristics in parent-mediated interventions for children with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 32(1), 1–21.
go back to reference Shorey, S., Ng, E. D., Haugan, G., & Law, E. (2020). The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis. Autism, 24(3), 591–604. Shorey, S., Ng, E. D., Haugan, G., & Law, E. (2020). The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis. Autism, 24(3), 591–604.
go back to reference Song, J., Mailick, M. R., & Greenberg, J. S. (2018). Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma. Social Science & Medicine, 217, 152–158. Song, J., Mailick, M. R., & Greenberg, J. S. (2018). Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma. Social Science & Medicine, 217, 152–158.
go back to reference Storch, E. A., Zavrou, S., Collier, A. B., Ung, D., Arnold, E. B., Mutch, P. J., …Murphy, T. K. 2015. Preliminary study of family accommodation in youth with autism spectrum disorders and anxiety: Incidence, clinical correlates, and behavioral treatment response. Journal of Anxiety Disorders, 34, 94–99. Storch, E. A., Zavrou, S., Collier, A. B., Ung, D., Arnold, E. B., Mutch, P. J., …Murphy, T. K. 2015. Preliminary study of family accommodation in youth with autism spectrum disorders and anxiety: Incidence, clinical correlates, and behavioral treatment response. Journal of Anxiety Disorders, 34, 94–99.
go back to reference Thompson-Hollands, J., Kerns, C. E., Pincus, D. B., & Comer, J. S. (2014). Parental accommodation of child anxiety and related symptoms: Range, impact, and correlates. Journal of Anxiety Disorders, 28(8), 765–773. Thompson-Hollands, J., Kerns, C. E., Pincus, D. B., & Comer, J. S. (2014). Parental accommodation of child anxiety and related symptoms: Range, impact, and correlates. Journal of Anxiety Disorders, 28(8), 765–773.
go back to reference Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262–275. Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262–275.
go back to reference Vernhet, C., Michelon, C., Dellapiazza, F., Rattaz, C., Geoffray, M. M., Roeyers,H., … Baghdadli, A. (2021). Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers. Quality of Life Research, 1–10. Vernhet, C., Michelon, C., Dellapiazza, F., Rattaz, C., Geoffray, M. M., Roeyers,H., … Baghdadli, A. (2021). Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers. Quality of Life Research, 1–10.
Metagegevens
Titel
Characterizing Accommodations by Parents of Young Children with Autism: A Mixed Methods Analysis
Auteurs
Yael G. Dai
Alice S. Carter
Publicatiedatum
28-06-2022
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-022-05652-6