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

  • Brittany N. Hand
  • Alison E. Lane
  • Paul De Boeck
  • D. Michele Basso
  • Deborah S. Nichols-Larsen
  • Amy R. Darragh
S.I. : Parenting Children with ASD

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.

Keywords

Pediatrics Autism Caregiver burden Caregiver strain Sensory processing Sensory subtypes 

Notes

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.

Author 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.

Compliance with Ethical Standards

Ethical Approval

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.

Conflict of interest

The authors declared that they have no conflict of interest.

Informed Consent

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

Supplementary material

10803_2017_3348_MOESM1_ESM.docx (79 kb)
Supplementary material 1 (DOCX 78 KB)
10803_2017_3348_MOESM2_ESM.docx (63 kb)
Supplementary material 2 (DOCX 62 KB)

References

  1. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 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.CrossRefPubMedGoogle Scholar
  3. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  4. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 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.CrossRefGoogle Scholar
  6. Brown, T. A. (2015). Confirmatory factor analysis for applied research. New York: Guilford Publications.Google Scholar
  7. Butts, C. T., & Butts, M. C. T. (2009). Package “yacca.” Retrieved from http://w.download.idg.pl/CRAN/web/packages/yacca/yacca.pdf.
  8. 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.CrossRefGoogle Scholar
  9. Centers for Disease Control (CDC). (2016). Health-related quality of life (HRQOL). Retrieved from https://www.cdc.gov/hrqol/index.htm.
  10. Cohen, J., & Cohen, P. (1983). Applied multiple regression/correlation analysis for the behavioral sciences. Hillsdale, NJ: Erlbaum.Google Scholar
  11. 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.CrossRefPubMedGoogle Scholar
  12. 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.CrossRefGoogle Scholar
  13. 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.CrossRefPubMedGoogle Scholar
  14. Eapen, V., & Guan, J. (2016). Parental quality of life in autism spectrum disorder: Current status and future directions. Acta Psychopathologica, 2(1), 1–14.CrossRefGoogle Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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.CrossRefPubMedGoogle Scholar
  17. Fish, L. J. (1988). Why multivariate methods are usually vital. Measurement and Evaluation in Counseling and Development, 21(3), 130–137.Google Scholar
  18. 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.
  19. 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.CrossRefGoogle Scholar
  20. 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.PubMedGoogle Scholar
  21. Hair, J. (2006). Multivariate Data Analysis (6th edn.). Upper Saddle River, NJ: Pearson Prentice Hall.Google Scholar
  22. 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.Google Scholar
  23. 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.CrossRefGoogle Scholar
  24. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  25. 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.CrossRefPubMedGoogle Scholar
  26. 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.CrossRefGoogle Scholar
  27. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  28. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  29. 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.CrossRefGoogle Scholar
  30. 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.CrossRefPubMedGoogle Scholar
  31. 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.CrossRefPubMedGoogle Scholar
  32. 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.CrossRefPubMedGoogle Scholar
  33. 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.CrossRefGoogle Scholar
  34. 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.CrossRefPubMedGoogle Scholar
  35. MacNeil, L. K., & Mostofsky, S. H. (2012). Specificity of dyspraxia in children with autism. Neuropsychology, 26(2), 165–171. doi: 10.1037/a0026955.CrossRefPubMedPubMedCentralGoogle Scholar
  36. 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.CrossRefPubMedGoogle Scholar
  37. Maruish, M. E. (Ed.). (2012). User’s manual for the SF-12v2 Health Survey (3rd edn.). Lincoln, RI: QualityMetric Incorporated.Google Scholar
  38. 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.CrossRefPubMedGoogle Scholar
  39. 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
  40. Meredith, W. (1964). Canonical correlations with fallible data. Psychometrika, 29(1), 55–65. doi: 10.1007/BF02289567.CrossRefGoogle Scholar
  41. 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.CrossRefPubMedGoogle Scholar
  42. 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.CrossRefPubMedGoogle Scholar
  43. 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.
  44. 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.CrossRefPubMedGoogle Scholar
  45. 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
  46. 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.CrossRefPubMedGoogle Scholar
  47. 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.CrossRefPubMedGoogle Scholar
  48. 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.CrossRefGoogle Scholar
  49. Tabachnick, B., & Fidell, L. (2001). Using multivariate statistics (4th edn.). Boston, MA: Allyn and Bacon.Google Scholar
  50. 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.CrossRefPubMedGoogle Scholar
  51. 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.
  52. 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.
  53. 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.CrossRefPubMedGoogle Scholar
  54. 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.CrossRefPubMedGoogle Scholar
  55. 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.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.College of Health ProfessionsMedical University of South CarolinaCharlestonUSA
  2. 2.Priority Research Centre Grow Up Well®The University of NewcastleNewcastleAustralia
  3. 3.Department of PsychologyThe Ohio State UniversityColumbusUSA
  4. 4.School of Health and Rehabilitation SciencesThe Ohio State UniversityColumbusUSA

Personalised recommendations