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Caregiver Burden Varies by Sensory Subtypes and Sensory Dimension Scores of Children with Autism

  • S.I. : Parenting Children with ASD
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Abstract

Understanding characteristics associated with burden in caregivers of children with autism spectrum disorder (ASD) is critical due to negative health consequences. We explored the association between child sensory subtype, sensory dimension scores, and caregiver burden. A national survey of caregivers of children with ASD aged 5–13 years was conducted (n = 367). The relationship between variables of interest and indicators of caregiver burden, including health-related quality of life (HRQOL) and caregiver strain, was examined with canonical correlation analyses. Caregiver strain was, but caregiver HRQOL was not, significantly associated with child sensory subtype and sensory dimension scores. Caregiver age, child age, and household income were also associated with caregiver strain. Potential explanatory mechanisms for these findings, derived from published qualitative studies, are discussed.

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References

  • Allik, H., Larsson, J.-O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes, 4(1), 1. doi:10.1186/1477-7525-4-1.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ashburner, J., Rodger, S., Ziviani, J., & Jones, J. (2014). Occupational therapy services for people with autism spectrum disorders: Current state of play, use of evidence and future learning priorities. Australian Occupational Therapy Journal, 61(2), 110–120. doi:10.1111/1440-1630.12083.

    Article  PubMed  Google Scholar 

  • Ausderau, K. K., Furlong, M., Sideris, J., Bulluck, J., Little, L. M., Watson, L. R., … Baranek, G. T. (2014). Sensory subtypes in children with autism spectrum disorder: Latent profile transition analysis using a national survey of sensory features. Journal of Child Psychology and Psychiatry, 55(8), 935–944. doi:10.1111/jcpp.12219.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bagby, M. S., Dickie, V. A., & Baranek, G. T. (2012). How sensory experiences of children with and without autism affect family occupations. American Journal of Occupational Therapy, 66(1), 78–86. doi:10.5014/ajot.2012.000604.

    Article  PubMed  PubMed Central  Google Scholar 

  • Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The caregiver strain questionnaire measuring the impact on the family of living with a child with serious emotional disturbance. Journal of Emotional and Behavioral Disorders, 5(4), 212–222. doi:10.1177/106342669700500404.

    Article  Google Scholar 

  • Brown, T. A. (2015). Confirmatory factor analysis for applied research. New York: Guilford Publications.

    Google Scholar 

  • Butts, C. T., & Butts, M. C. T. (2009). Package “yacca.” Retrieved from http://w.download.idg.pl/CRAN/web/packages/yacca/yacca.pdf.

  • Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., … Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child & Adolescent Psychiatry, 51(9), 879–888. doi:10.1016/j.jaac.2012.06.017.

    Article  Google Scholar 

  • Centers for Disease Control (CDC). (2016). Health-related quality of life (HRQOL). Retrieved from https://www.cdc.gov/hrqol/index.htm.

  • Cohen, J., & Cohen, P. (1983). Applied multiple regression/correlation analysis for the behavioral sciences. Hillsdale, NJ: Erlbaum.

    Google Scholar 

  • Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. doi:10.1111/j.1365-2788.2010.01258.x.

    Article  PubMed  Google Scholar 

  • Daniels, A. M., Rosenberg, R. E., Anderson, C., Law, J. K., Marvin, A. R., & Law, P. A. (2011). Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry. Journal of Autism and Developmental Disorders, 42(2), 257–265. doi:10.1007/s10803-011-1236-7.

    Article  Google Scholar 

  • Dardas, L. A., & Ahmad, M. M. (2014). Psychosocial correlates of parenting a child with autistic disorder. Journal of Nursing Research, 22(3), 183–191. doi:10.1097/jnr.0000000000000023.

    Article  PubMed  Google Scholar 

  • Eapen, V., & Guan, J. (2016). Parental quality of life in autism spectrum disorder: Current status and future directions. Acta Psychopathologica, 2(1), 1–14.

    Article  Google Scholar 

  • Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375–387. doi:10.1177/1362361309105658.

    Article  Google Scholar 

  • Faul, F., Erdfelder, E., Buchner, A., & Lang, A.-G. (2009). Statistical power analyses using G*Power 3.1: Tests for correlation and regression analyses. Behavior Research Methods, 41(4), 1149–1160. doi:10.3758/BRM.41.4.1149.

    Article  PubMed  Google Scholar 

  • Fish, L. J. (1988). Why multivariate methods are usually vital. Measurement and Evaluation in Counseling and Development, 21(3), 130–137.

    Google Scholar 

  • Fox, J., Nie, Z., Byrnes, J., Culbertson, M., DebRoy, S., Friendly, M., … others. (2016). Package “sem.” Retrieved from http://mirror.mdx.ac.uk/R/web/packages/sem/sem.pdf.

  • Gallant, M. P., & Connell, C. M. (1998). The stress process among dementia spouse caregivers are caregivers at risk for negative health behavior change? Research on Aging, 20(3), 267–297. doi:10.1177/0164027598203001.

    Article  Google Scholar 

  • Goldstein, N. E., Concato, J., Fried, T. R., Kasl, S. V., Johnson-Hurzeler, R., & Bradley, E. H. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20(1), 38–43.

    PubMed  Google Scholar 

  • Hair, J. (2006). Multivariate Data Analysis (6th edn.). Upper Saddle River, NJ: Pearson Prentice Hall.

    Google Scholar 

  • Hand, B. N., Dennis, S., & Lane, A. E. (2017). Latent constructs underlying sensory subtypes in children with autism: A preliminary study. Autism Research, 10(8), 1364–1371.

  • Hastings, R. P. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual & Developmental Disability, 27(3), 149–160. doi:10.1080/1366825021000008657.

    Article  Google Scholar 

  • Izawa, J., Pekny, S. E., Marko, M. K., Haswell, C. C., Shadmehr, R., & Mostofsky, S. H. (2012). Motor learning relies on integrated sensory inputs in ADHD, but over-selectively on proprioception in autism spectrum conditions. Autism Research, 5(2), 124–136. doi:10.1002/aur.1222.

    Article  PubMed  PubMed Central  Google Scholar 

  • Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1227. doi:10.1007/s10803-010-1140-6.

    Article  PubMed  Google Scholar 

  • Khanna, R., Madhavan, S. S., Smith, M. J., Tworek, C., Patrick, J. H., & Becker-Cottrill, B. (2012). Psychometric properties of the caregiver strain questionnaire (CGSQ) among caregivers of children with autism. Autism: The International Journal of Research and Practice, 16(2), 179–199. doi:10.1177/1362361311406143.

    Article  Google Scholar 

  • Kirby, A. V., White, T. J., & Baranek, G. T. (2015). Caregiver strain and sensory features in children with autism spectrum disorder and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120(1), 32–45. doi:10.1352/1944-7558-120.1.32.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kring, S. R., Greenberg, J. S., & Seltzer, M. M. (2008). Adolescents and adults with autism with and without co-morbid psychiatric disorders: Differences in maternal Well-Being. Journal of Mental Health Research in Intellectual Disabilities, 1(2), 53–74. doi:10.1080/19315860801988228.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kring, S. R., Greenberg, J. S., & Seltzer, M. M. (2009). The impact of health problems on behavior problems in adolescents and adults with autism spectrum disorders: Implications for maternal burden. Social Work in Mental Health, 8(1), 54–71. doi:10.1080/15332980902932441.

    Article  Google Scholar 

  • Lane, A. E., Dennis, S. J., & Geraghty, M. E. (2011). Brief report: Further evidence of sensory subtypes in autism. Journal of Autism and Developmental Disorders, 41(6), 826–831. doi:10.1007/s10803-010-1103-y.

    Article  PubMed  Google Scholar 

  • Lane, A. E., Molloy, C. A., & Bishop, S. L. (2014). Classification of children with autism spectrum disorder by sensory subtype: A case for sensory-based phenotypes: Sensory phenotypes in autism. Autism Research, 7(3), 322–333. doi:10.1002/aur.1368.

    Article  PubMed  Google Scholar 

  • Lane, A. E., Young, R. L., Baker, A. E. Z., & Angley, M. T. (2010). Sensory processing subtypes in autism: Association with adaptive behavior. Journal of Autism and Developmental Disorders, 40(1), 112–122. doi:10.1007/s10803-009-0840-2.

    Article  PubMed  Google Scholar 

  • Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., … Smerbeck, A. M. (2009). Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24(4), 227–239. doi:10.1177/1088357609347371.

    Article  Google Scholar 

  • Liu, M., Lambert, C. E., & Lambert, V. A. (2007). Caregiver burden and coping patterns of Chinese parents of a child with a mental illness. International Journal of Mental Health Nursing, 16(2), 86–95. doi:10.1111/j.1447-0349.2007.00451.x.

    Article  PubMed  Google Scholar 

  • MacNeil, L. K., & Mostofsky, S. H. (2012). Specificity of dyspraxia in children with autism. Neuropsychology, 26(2), 165–171. doi:10.1037/a0026955.

    Article  PubMed  PubMed Central  Google Scholar 

  • Mangeot, S. D., Miller, L. J., McIntosh, D. N., McGrath-Clarke, J., Simon, J., Hagerman, R. J., & Goldson, E. (2001). Sensory modulation dysfunction in children with attention-deficit–hyperactivity disorder. Developmental Medicine and Child Neurology, 43(6), 399–406. doi:10.1017/S0012162201000743.

    Article  PubMed  Google Scholar 

  • Maruish, M. E. (Ed.). (2012). User’s manual for the SF-12v2 Health Survey (3rd edn.). Lincoln, RI: QualityMetric Incorporated.

    Google Scholar 

  • Matson, J. L., Neal, D., Fodstad, J. C., & Hess, J. A. (2010). The relation of social behaviours and challenging behaviours in infants and toddlers with Autism Spectrum Disorders. Developmental Neurorehabilitation, 13(3), 164–169. doi:10.3109/17518420903270683.

    Article  PubMed  Google Scholar 

  • McIntosh, D. N., Miller, L. J., Shyu, V., & Dunn, W. (1999). Overview of the Short Sensory Profile (SSP). In The sensory profile: Examiner’s manual (pp. 59–73). San Antonio, TX: Psychological Corporation.

    Google Scholar 

  • Meredith, W. (1964). Canonical correlations with fallible data. Psychometrika, 29(1), 55–65. doi:10.1007/BF02289567.

    Article  Google Scholar 

  • Nabors, N., Seacat, J., & Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16(12), 1039–1050. doi:10.1080/02699050210155285.

    Article  PubMed  Google Scholar 

  • Nimon, K., Henson, R. K., & Gates, M. S. (2010). Revisiting interpretation of canonical correlation analysis: A tutorial and demonstration of canonical commonality analysis. Multivariate Behavioral Research, 45(4), 702–724. doi:10.1080/00273171.2010.498293.

    Article  PubMed  Google Scholar 

  • R Development Core Team. (2011). R: A language and environment for statistical computing. Vienna: R Foundation for Statistical Computing. Retrieved from http://www.R-project.org.

  • Schaaf, R. C., & Lane, A. E. (2015a). Toward a best-practice protocol for assessment of sensory features in ASD. Journal of Autism and Developmental Disorders, 45(5), 1380–1395. doi:10.1007/s10803-014-2299-z.

    Article  PubMed  Google Scholar 

  • Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., & Benevides, T. W. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism: The International Journal of Research and Practice, 15(2), 1–7. doi:10.1177/1362361310386505.

    Google Scholar 

  • Schoen, S. A., Miller, L. J., & Green, K. E. (2008). Pilot study of the sensory over-responsivity scales: Assessment and inventory. American Journal of Occupational Therapy, 62(4), 393–406. doi:10.5014/ajot.62.4.393.

    Article  PubMed  Google Scholar 

  • Sherry, A., & Henson, R. K. (2005). Conducting and interpreting canonical correlation analysis in personality research: A user-friendly primer. Journal of Personality Assessment, 84(1), 37–48.

    Article  PubMed  Google Scholar 

  • Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86–97. doi:10.1016/j.rasd.2008.04.006.

    Article  Google Scholar 

  • Tabachnick, B., & Fidell, L. (2001). Using multivariate statistics (4th edn.). Boston, MA: Allyn and Bacon.

    Google Scholar 

  • Tavassoli, T., Bellesheim, K., Siper, P. M., Wang, A. T., Halpern, D., Gorenstein, M., … Buxbaum, J. D. (2016). Measuring sensory reactivity in autism spectrum disorder: Application and simplification of a clinician-administered sensory observation scale. Journal of Autism and Developmental Disorders, 46(1), 287–293. doi:10.1007/s10803-015-2578-3.

    Article  PubMed  Google Scholar 

  • Templ, M., Alfons, A., Kowarik, A., Prantner, B., & Templ, M. M. (2015). Package “VIM”. Retrieved from http://alvarestech.com/pub/plan/R/web/packages/VIM/VIM.pdf.

  • The Interagency Autism (IACC) Coordinating Committee. (2014). Strategic plan for autism spectrum disorder (ASD) research: 2013 update. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website http://iacc.hhs.gov/strategic-plan/2013/index.shtml.

  • Uljarević, M., Lane, A., Kelly, A., & Leekam, S. (2016). Sensory subtypes and anxiety in older children and adolescents with autism spectrum disorder. Autism Research, 9, 1073–1078. doi:10.1002/aur.1602.

    Article  PubMed  Google Scholar 

  • Ware, J., Kosinski, M. M., & Keller, S. (1996). A 12-Item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.

    Article  PubMed  Google Scholar 

  • Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36): I. conceptual framework and item selection. Medical Care, 30(6), 473–483.

    Article  PubMed  Google Scholar 

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Funding

This work was funded by the M. Rosita Schiller Research Award and Alumni Grant for Graduate Research and Scholarship from The Ohio State University. Additionally, support was received from the Center for Clinical and Translational Science at The Ohio State University and the Interactive Autism Network.

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  1. Brittany N. Hand

    Present address: College of Health Professions, Medical University of South Carolina, 151B Rutledge Ave., Charleston, SC, 29403, USA

Authors and Affiliations

  1. Priority Research Centre Grow Up Well®, The University of Newcastle, Newcastle, NSW, Australia

    Alison E. Lane

  2. Department of Psychology, The Ohio State University, Columbus, OH, USA

    Paul De Boeck

  3. School of Health and Rehabilitation Sciences, The Ohio State University, Columbus, OH, USA

    Brittany N. Hand, D. Michele Basso, Deborah S. Nichols-Larsen & Amy R. Darragh

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  1. Brittany N. Hand
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  2. Alison E. Lane
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Contributions

BH participated in study design, conducted statistical analyses, and drafted the manuscript; AL participated in study design, results interpretation, and manuscript revisions; PDB oversaw statistical analyses and participated in manuscript revisions; DMB participated in study design and manuscript revisions; DNL participated in study design and manuscript revisions; AD oversaw study design and participated in manuscript revisions. All authors read and approved the final manuscript.

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Correspondence to Brittany N. Hand.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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The authors declared that they have no conflict of interest.

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Informed consent was obtained from all individual participants included in the study.

Additional information

The work contained within this manuscript was completed in partial fulfilment of Dr. Hand’s doctoral dissertation.

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Hand, B.N., Lane, A.E., De Boeck, P. et al. Caregiver Burden Varies by Sensory Subtypes and Sensory Dimension Scores of Children with Autism. J Autism Dev Disord 48, 1133–1146 (2018). https://doi.org/10.1007/s10803-017-3348-1

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