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Family-centered Services for Children with ASD and Limited Speech: The Experiences of Parents and Speech-language Pathologists

  • S.I. : Parenting Children with ASD
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

Although family-centered services have long been discussed as essential in providing successful services to families of children with autism spectrum disorder (ASD), ideal implementation is often lacking. This study aimed to increase understanding of how families with children with ASD and limited speech receive services from speech-language pathologists (SLPs). 99 parents of children with ASD and limited speech and 211 SLPs who served children with ASD and limited speech completed questionnaires measuring their experiences with the provision of family-centered services. Findings revealed that parents and SLPs differed in their views on the degree to which family-centered services were being implemented. Clinical implications and future research directions are discussed in order to promote continued growth in the acquisition of family-centered skills.

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References

  • American Speech-Language- Hearing Association. (2002). Augmentative and alternative communication: Knowledge and skills for service delivery. http://www.asha.org.

  • American Speech-Language- Hearing Association. (n.d.a). Family-Centered Practice (Practice Portal). Retrieved November 12, 2016, from http://www.asha.org.

  • American Speech-Language- Hearing Association. (2013). SLP Health Care Survey report: Caseload characteristics trends, 2005–2013. http://www.asha.org.

  • American Speech-Language- Hearing Association. (2014). 2014 Schools Survey report: SLP caseload characteristics. http://www.asha.org.

  • Arango, P. (2011). Family-centered care. Academic Paediatrics, 11, 97–99. doi:10.1016/j.acap.2010.12.004.

    Article  Google Scholar 

  • Bailey, R. L., Parette, H. P., Stoner, J. B., Angell, M. E., & Carroll, K. (2006). Family members’ perceptions of augmentative and alternative communication device use. Language, Speech, And Hearing Services in Schools, 37, 50–60. doi:10.1044/0161-1461(2006/006).

    Article  PubMed  Google Scholar 

  • Beatson, J. E. (2006). Preparing speech-language pathologists as family-centered practitioners in assessment and program planning for children with autism spectrum disorder. Seminars in Speech and Language, 27, 1–9. doi:10.1055/s-2006-932434.

    Article  PubMed  Google Scholar 

  • Bellin, M. H., Osteen, P., Heffernan, C., Levy, J. M., & Snyder-Vogel, M. E. (2011). Parent and health care professional perspectives on family-centered care for children with special health care needs: are we on the same page? Health & Social Work, 36, 281–290. doi:10.1093/hsw/36.4.281.

    Article  Google Scholar 

  • Bruce, B., Letourneau, N., Ritchie, J., Larocque, S., Dennis, C., & Elliott, M. R. (2002). A multisite study of health professionals’ perceptions and practices of family-centered care. Journal of Family Nursing, 8, 408–429. doi:10.1177/107484002237515.

    Article  Google Scholar 

  • Crais, E. R., Roy, V. P., & Free, K. (2006). Parents’ and professionals’ perceptions of the implementation of family-centered practices in child assessments. American Journal of Speech-Language Pathology, 15, 365–377. doi:10.1044/1058-0360(2006/034).

    Article  PubMed  Google Scholar 

  • Cridland, E., Jones, S., Magee, C., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18, 213–222. doi:10.1177/1362361312472261.

    Article  PubMed  Google Scholar 

  • Dickens, K., Matthews, L. R., & Thompson, J. (2010). Parent and service providers’ perceptions regarding the delivery of family-centered paedriatric rehabilitation services in a children’s hospital. Child: Care, Health and Development, 37, 64–73. doi:10.1111/j.1365-2214.2010.01125.x.

    Google Scholar 

  • Dunst, C. (2002). Family-centered practices: Birth through high school. Journal of Special Education, 36, 139–147. doi:10.1177/00224669020360030401.

    Article  Google Scholar 

  • Dunst, C. J., Boyd, K., Trivette, C. M., & Hamby, D. W. (2002). Family-oriented program models and professional helpgiving practices. Family Relations, 51, 221–229. doi:10.1111/j.1741-3729.2002.00221.x.

    Article  Google Scholar 

  • Dunst, C. J., & Trivette, C. M. (1996). Empowerment, effective helpgiving practices and family-centered care. Pediatric Nursing, 22, 334–337. doi:10.1002/mrdd.20176.

    PubMed  Google Scholar 

  • Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13, 370–378. doi:10.1002/mrdd.20176.

    Article  PubMed  Google Scholar 

  • Dyke, P., Buttigieg, P., Blackmore, A. M., & Ghose, A. (2006). Use of the Measure of Process of Care for families (MPOC-56) and service providers (MPOC- SP) to evaluate family-centred services in a paediatric disability setting. Child: Care, Health and Development, 32, 167–176. doi:10.1111/j.1365-2214.2006.00604.x.

    Google Scholar 

  • Edwards, A., Brebner, C., Mccormack, P. F., & Macdougall, C. (2016). “More than blowing bubbles”: What parents want from therapists working with children with autism spectrum disorder. International Journal of Speech-Language Pathology, 18, 493–505. doi:10.3109/17549507.2015.1112835.

    Article  PubMed  Google Scholar 

  • Graves, C., & Hayes, V. E. (1996). Do nurses and parents of children with chronic conditions agree on parental needs? Journal of Pediatric Nursing, 11, 288–299. doi:10.1016/s0882-5963(05)80062-4.

    Article  PubMed  Google Scholar 

  • Hammer, C. S. (1998). Toward a” thick description” of families: Using ethnography to overcome the obstacles to providing family-centered early intervention services. American Journal of Speech-Language Pathology, 7, 5. doi:10.1044/1058-0360.0701.05.

    Article  Google Scholar 

  • Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics, 42, 377–381. doi:10.1016/j.jbi.2008.08.010.

    Article  PubMed  Google Scholar 

  • Hodgetts, S., Nicholas, D., Zwaigenbaum, L., & McConnell, D. (2013). Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors. Social Science & Medicine, 96, 138–146. doi:10.1177/1362361314543531.

    Article  Google Scholar 

  • Iacono, T., & Cameron, M. (2009). Australian speech language pathologists’ perceptions and experiences of augmentative and alternative communication in early childhood intervention. Augmentative and Alternative Communication, 25, 236–249. doi:10.3109/07434610903322151.

    Article  PubMed  Google Scholar 

  • Johnson, J. M., Inglebret, E., Jones, C., & Ray, J. (2006). Perspectives of speech language pathologists regarding success versus abandonment of AAC. Augmentative and Alternative Communication, 22, 85–99. doi:10.1080/07434610500483588.

    Article  PubMed  Google Scholar 

  • Jones, S. D., Angelo, D. H., & Kokoska, S. M. (1998). Stressors and family supports: Families with children using augmentative & alternative communication technology. Communication Disorders Quarterly, 20, 37–44. doi:10.1177/152574019902000205.

    Google Scholar 

  • Kent-Walsh, J., Stark, C., & Binger, C. (2008). Tales from school trenches: AAC service-delivery and professional expertise. Seminars in Speech and Language, 29, 146–154. doi:10.1055/s-2008-1079128.

    Article  PubMed  Google Scholar 

  • King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined Measure of Process of Care (MPOC—20). Children’s Health Care, 33, 35–57. doi:10.1207/sl5326888chc330l_3.

    Article  Google Scholar 

  • King, S., Rosenbaum, P., & King, G. (1996). Parents’ perceptions of caregiving: Development and validation of a measure of processes. Developmental Medicine and Child Neurology, 38, 757–772. doi:10.1111/j.1469-8749.1996.tb15110.x.

    Article  PubMed  Google Scholar 

  • King, S., Rosenbaum, P. L., & King, G. (1995). The Measure of Processes of Care (MPOC): A means to assess family-centred behaviours of health care providers. Neurodevelopmental Clinical Research Unit, McMaster University.

  • Kogan, M., Strickland, B., Blumberg, S., Singh, G., Perrin, J., & van Dyck, P. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, 1149–1158. doi:10.1542/peds.2008-1057.

    Article  Google Scholar 

  • Mackintosh, V. H., Myers, B. J., & GoinKochel, R. P. (2005). Sources of information and support used by parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 12, 41–52.

    Google Scholar 

  • Mandak, K., & Light, J. (2017). The practices and beliefs of school-based speech-language pathologists on family-centered services for children with complex communication needs. Manuscript submitted for publication.

  • Mandak, K., O’Neill, T., Light, J., & Fosco, G. M. (2017). Bridging the gap from values to actions: a family systems framework for family-centered AAC services. Augmentative and Alternative Communication. doi:10.1080/07434618.2016.1271453.

    PubMed  Google Scholar 

  • Mannion, A., & Leader, G. (2013). Comorbidity in autism spectrum disorder: A literature review. Research in Autism Spectrum Disorders, 7, 1595–1616. doi:10.1016/j.rasd.2013.09.006.

    Article  Google Scholar 

  • Marshall, J., & Goldbart, J. (2008). “Communication is everything I think.” Parenting a child who needs augmentative and alternative communication (AAC). International Journal of Language & Communication Disorders, 43, 77–98. doi:10.1080/13682820701267444.

    Article  Google Scholar 

  • Marvin, L., Montano, J., Fusco, L., & Gould, E. (2003). Speech-language pathologists’ perceptions of their training and experience in using augmentative and alternative communication. Contemporary Issues in Communication Sciences and Disorders, 30, 76–83.

    Google Scholar 

  • Matson, J., Kozlowski, A., & Matson, M. (2012). Speech deficits in persons with autism: Etiology and symptom presentation. Research in Autism Spectrum Disorders, 6, 573–577. doi:10.1016/j.rasd.2011.10.009.

    Article  Google Scholar 

  • McNaughton, D., Rackensperger, T., Benedek-Wood, E., Krezman, C., Williams, M. B., & Light, J. (2008). “A child needs to be given a chance to succeed”: Parents of individuals who use AAC describe the benefits and challenges of learning AAC technologies. Augmentative and Alternative Communication, 24, 43–55. doi:10.1080/07434610701421007.

    Article  PubMed  Google Scholar 

  • McWilliam, R. A., Snyder, P., Harbin, G. L., Porter, P., & Munn, D. (2000). Professionals’ and families’ perceptions of family-centered practices in infant-toddler services. Early Education & Development, 11, 519–538.

    Article  Google Scholar 

  • Minuchin, P. (1985). Families and individual development: Provocations from the field of family therapy. Child Development, 56, 289–302. doi:10.2307/1129720.

    Article  PubMed  Google Scholar 

  • Neely-Barnes, S., Hall, H., Roberts, R., et al. (2011). Parenting a child with an autism spectrum disorder: Public perceptions and parental conceptualizations. Journal of Family Social Work, 14, 208–225. doi:10.1207/s15566935eed1104_9.

    Article  Google Scholar 

  • Norman, G. (2010). Likert scales, levels of measurement and the “laws” of statistics. Advances in Health Sciences Education, 15, 625–632. doi:10.1007/s10459-010-9222-y.

    Article  PubMed  Google Scholar 

  • Pappas, N. W., McLeod, S., McAllister, L., & McKinnon, D. H. (2009). Parental involvement in speech intervention: A national survey. Clinical Linguistics & Phonetics, 22, 335–344.

    Article  Google Scholar 

  • Parette, H. P., Brotherson, M. J., & Huer, M. B. (2000). Giving families a voice in augmentative and alternative communication decision-making. Education & Training in Mental Retardation & Developmental Disabilities, 35, 177–190. Retrieved from http://www.jstor.org/stable/23879942.

  • Perrin, E. C., Lewkowicz, C., & Young, M. H. (2000). Shared vision: Concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics, 105, 277–285.

    PubMed  Google Scholar 

  • Ratcliff, A., Koul, R., & Lloyd, L. L. (2008). Preparation in augmentative and alternative communication: An update for speech-language pathology training. American Journal of Speech-Language Pathology, 17, 48–59. doi:10.1044/1058-0360(2008/005).

    Article  PubMed  Google Scholar 

  • Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12, 679–683. doi:10.1007/s10995-007-0307-z.

    Article  PubMed  Google Scholar 

  • Schwartz, H., & Drager, K. (2008). Training and knowledge in autism among speech-language pathologists: A survey. Language, Speech, and Hearing Services in Schools, 39, 66–77. doi:10.1044/0161-1461(2008/007).

    Article  PubMed  Google Scholar 

  • Volkmar, F., & Pauls, D. (2003). Autism. Lancet, 362, 1133–1141.

    Article  PubMed  Google Scholar 

  • Woodside, J., Rosenbaum, P., King, S., & King, G. (2001). Family-centered services: developing and validating a self-assessment tool for pediatric service providers. Children’s Health Care, 30, 237–252. doi:10.1207/s15326888chc3003_5.

    Article  Google Scholar 

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Acknowledgments

Portions of this article were submitted by the first author in partial fulfillment of PhD requirements at The Pennsylvania State University Department of Communication Sciences and Disorders. This project was supported, in part, by funding from the: (a) Penn State AAC Leadership Project, a doctoral training grant funded by U.S. Department of Education Grant #H325D110008; (b) Hintz Family Endowed Chair in Children’s Communicative Competence; and (c) Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (The RERC on AAC), funded by Grant #90RE5017 from the National Institute on Disability, Independent Living, and Rehabilitation (NIDILRR) within the Administration for Community Living (ACL) of the U.S. Department of Health and Human Services (HHS). The authors would like to thank the Interactive Autism Network (IAN) Research Database at the Kennedy Krieger Institute, Baltimore for their assistance in the recruitment process.

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Authors and Affiliations

  1. Department of Communication Sciences and Disorders, The Pennsylvania State University, Ford Building, University Park, PA, 16802, USA

    Kelsey Mandak & Janice Light

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  1. Kelsey Mandak
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  2. Janice Light
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Contributions

KM conceptualized the study design, obtained funding, recruited participants, completed data analysis and interpretation, and wrote the manuscript. JL contributed to the interpretation of the findings and made significant contributions to the revision of the paper. All authors read and approved the final manuscript.

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Correspondence to Kelsey Mandak.

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Mandak, K., Light, J. Family-centered Services for Children with ASD and Limited Speech: The Experiences of Parents and Speech-language Pathologists. J Autism Dev Disord 48, 1311–1324 (2018). https://doi.org/10.1007/s10803-017-3241-y

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  • DOI: https://doi.org/10.1007/s10803-017-3241-y

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