Parental perceptions of social life before and after attending a parent training program for children with complex communication needs: the ComAlong example

References

• Abidin, R. R. (2012). Parenting stress index (PSI-4; 4th ed.). Psychological Assessment Resources.
   Google Scholar
• Aggarwal, R., & Ranganathan, P. (2019). Study designs: Part 2 – Descriptive studies. Perspectives in Clinical Research, 10(1), 34–36. doi:10.4103/picr.PICR_154_18
   PubMedGoogle Scholar
• Akamoglu, Y., & Meadan, H. (2018). Parent-implemented language and communication interventions for children with developmental delays and disabilities: A scoping review. Review Journal of Autism and Developmental Disorders, 5(3), 294–309. doi:10.1007/s40489-018-0140-x
   Web of Science ®Google Scholar
• Anaby, D., Hand, C., Bradley, L., DiRezze, B., Forhan, M., DiGiacomo, A., & Law, M. (2013). The effect of the environment on participation of children and youth with disabilities: A scoping review. Disability and Rehabilitation, 35(19), 1589–1598. doi:10.3109/09638288.2012.748840
   PubMed Web of Science ®Google Scholar
• Axelsson, A. K., Granlund, M., & Wilder, J. (2013). Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Child: Care, Health and Development, 39(4), 523–534. doi:10.1111/cch.12044
   PubMed Web of Science ®Google Scholar
• Baixauli, I., Mira, A., Berenguer, C., Roselló, B., & Miranda, A. (2019). Family factors and communicative skills in children with autism without intellectual disability. Journal of Autism and Developmental Disorders, 49(12), 5023–5035. doi:10.1007/s10803-019-04216-5
   PubMed Web of Science ®Google Scholar
• Bearss, K., Burrell, T. L., Stewart, L., & Lawrence, S. (2015). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18(2), 170–182. doi:10.1007/s10567-015-0179-5
   PubMed Web of Science ®Google Scholar
• Beukelman, R., & Mirenda, P. (2013). Augmentative and alternative communication: Supporting children and adults with complex needs. Paul H. Brookes Pub.
   Google Scholar
• Bronfenbrenner, U. (1995). Developmental ecology through space and time: A future perspective. In P. Moen, G. H. Elder Jr, & K. Lüscher (Eds.), Examining lives in context: Perspectives on the ecology of human development (6th ed., pp. 619–647). American Psychological Association.
   Google Scholar
• Caicedo, C. (2014). Families with special needs children: Family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398–407. doi:10.1177/1078390314561326
   PubMed Web of Science ®Google Scholar
• Coburn, K. L., Jung, S., Ousley, C. L., Sowers, D. J., Wendelken, M., & Wilkinson, K. M. (2021). Centering the family in their system: A framework to promote family-centered AAC services. Augmentative and Alternative Communication (Baltimore, Md. : 1985)), 37(4), 229–240. doi:10.1080/07434618.2021.1991471
   PubMed Web of Science ®Google Scholar
• Dada, S., Flores, C., Bastable, K., & Schlosser, R. W. (2021). The effects of augmentative and alternative communication interventions on the receptive language skills of children with developmental disabilities: A scoping review. International Journal of Speech-Language Pathology, 23(3), 247–257. doi:10.1080/17549507.2020.1797165
   PubMed Web of Science ®Google Scholar
• Di Marino, E., Tremblay, S., Khetani, M., & Anaby, D. (2018). The effect of child, family and environmental factors on the participation of young children with disabilities. Disability and Health Journal, 11(1), 36–42. doi:10.1016/j.dhjo.2017.05.005
   PubMed Web of Science ®Google Scholar
• Donenberg, G., & Baker, B. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21(2), 179–198. doi:10.1007/BF00911315
   PubMed Web of Science ®Google Scholar
• Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered help giving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 370–378. doi:10.1002/mrdd.20176
   PubMedGoogle Scholar
• Ello, L., & Donovan, S. (2005). Assessment of the relationship between parenting stress and a child’s ability to functionally communicate. Research on Social Work Practice, 15(6), 531–544. doi:10.1177/1049731505278928
   Web of Science ®Google Scholar
• Enea, V., & Rusu, D. M. (2020). Raising a child with autism spectrum disorder: A systematic review of the literature investigating parenting stress. Journal of Mental Health Research in Intellectual Disabilities, 13(4), 283–321. doi:10.1080/19315864.2020.1822962
   Web of Science ®Google Scholar
• Ferm, U., Andersson, M., Broberg, M., Liljegren, T., & Thunberg, G. (2011). Parents’ and course leaders’ experiences of the ComAlong augmentative and alternative communication early intervention course. Disability Studies Quarterly, 31(4), 1–21. doi:10.18061/dsq.v31i4.1718
   Google Scholar
• Freiberg, K., Homel, R., & Branch, S. (2014). The parent empowerment and efficacy measure (PEEM): A tool for strengthening the accountability and effectiveness of family support services. Australian Social Work, 67(3), 405–418. doi:10.1080/0312407X.2014.902980
   Web of Science ®Google Scholar
• Fäldt, A., Fabian, H., Thunberg, G., & Lucas, S. (2020). All of a sudden we noticed a difference at home too”: Parents’ perception of a parent-focused early communication and AAC intervention for toddlers. Augmentative and Alternative Communication (Baltimore, Md. : 1985)), 36(3), 143–154. doi:10.1080/07434618.2020.1811757
   PubMed Web of Science ®Google Scholar
• Gupta, S. K. (2011). Intention-to-treat concept: A review. Perspectives in Clinical Research, 2(3), 109–112. doi:10.4103/2229-3485.83221
   PubMedGoogle Scholar
• Hemmeter, M. L., & Kaiser, A. (1994). Enhanced milieu teaching: Effects of parent-implemented language intervention. Journal of Early Intervention, 18(3), 269–289. doi:10.1177/105381519401800303
   Web of Science ®Google Scholar
• Heritier, S. R., Gebski, V. J., & Keech, A. C. (2003). Inclusion of patients in clinical trial analysis: The intention-to-treat principle. The Medical Journal of Australia, 179(8), 438–440. doi:10.5694/j.1326-5377.2003.tb05627
   PubMed Web of Science ®Google Scholar
• Hong, E. R., Ganz, J. B., Neely, L., Boles, M., Gerow, S., & Davis, J. L. (2016). A meta-analytic review of family-implemented social and communication interventions for individuals with developmental disabilities. Review Journal of Autism and Developmental Disorders, 3(2), 125–136. doi:10.1007/s40489-016-0071-3
   Web of Science ®Google Scholar
• Hughes, R. A., Heron, J., Sterne, J. A. C., & Tilling, K. (2019). Accounting for missing data in statistical analyses: Multiple imputation is not always the answer. International Journal of Epidemiology, 48(4), 1294–1304. doi:10.1093/ije/dyz032
   PubMed Web of Science ®Google Scholar
• Jonsson, A., Kristoffersson, L., Ferm, U., & Thunberg, G. (2011). The ComAlong communication boards: Parents’ use and experiences of aided language stimulation. Augmentative and Alternative Communication (Baltimore, Md. : 1985)), 27(2), 103–116. doi:10.3109/07434618.2011.580780
   PubMed Web of Science ®Google Scholar
• Kandel, I., & Merrick, J. (2007). The child with a disability: parental acceptance, management and coping. TheScientificWorldJournal, 7, 1799–1809. doi:10.1100/tsw.2007.265
   PubMedGoogle Scholar
• Kent-Walsh, J., Binger, C., & Malani, M. (2010). Teaching partners to support the communication skills of young children who use AAC: Lessons from the ImPAACT program. Early Childhood Services, 4(3), 155–170.
   Google Scholar
• Khetani, M., Graham, J. E., & Alvord, C. (2013). Community participation patterns among preschool‐aged children who have received P art C early intervention services. Child: Care, Health and Development, 39(4), 490–499. doi:10.1111/cch.12045
   PubMed Web of Science ®Google Scholar
• Kolb, D. A. (2015). Experiential learning: Experience as the source of learning and development., 2nd ed. Pearson.
   Google Scholar
• Law, M., Anaby, D., Teplicky, R., Khetani, M. A., Coster, W., & Bedell, G. (2013). Participation in the home environment among children and youth with and without disabilities. British Journal of Occupational Therapy, 76(2), 58–66. doi:10.4276/030802213X13603244419112
   Web of Science ®Google Scholar
• 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 (Baltimore, Md. : 1985)), 33(1), 32–41. doi:10.1080/07434618.2016.1271453
   PubMed Web of Science ®Google Scholar
• McCubbin, H. I., & Patterson, J. M. (1983). The family stress process: The double ABCX model of adjustment and adaptation. Marriage & Family Review, 6(1-2), 7–37. doi:10.1300/J002v06n01_02
   Google Scholar
• McDaniel, J., Brady, N. C., & Warren, S. F. (2022). Effectiveness of responsivity intervention strategies on prelinguistic and language outcomes for children with autism spectrum disorder: A systematic review and meta-analysis of group and single case studies. Journal of Autism and Developmental Disorders, 52(11), 4783–4816. doi:10.1007/s10803-021-05331-y
   PubMed Web of Science ®Google Scholar
• Minuchin, P. (1985). Families and individual development: Provocations from the field of family therapy. Child Development, 56(2), 289–302. doi:10.2307/1129720
   PubMed Web of Science ®Google Scholar
• Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187. doi:10.1111/j.1365-2214.2006.00644.x
   PubMed Web of Science ®Google Scholar
• Nowland, R., Thomson, G., McNally, L., Smith, T., & Whittaker, K. (2021). Experiencing loneliness in parenthood: A scoping review. Perspectives in Public Health, 141(4), 214–225. doi:10.1177/17579139211018243
   PubMed Web of Science ®Google Scholar
• Olivos, E. M., Gallagher, R. J., & Aguilar, J. (2010). Fostering collaboration with culturally and linguistically diverse families of children with moderate to severe disabilities. Journal of Educational and Psychological Consultation, 20(1), 28–40. doi:10.1080/10474410903535372
   Web of Science ®Google Scholar
• Paul, R., Norbury, C., & Gosse, C. (2018). Principles of intervention. In R. Paul, C. Norbury, & C. Gosse., &, (Eds.), Language disorders from infancy through adolescence: Listening, speaking, reading, writing, and communicating (5th ed, pp. 63–101). Elsevier. doi:10.1016/B978-0-323-44234-3.00012-9
   Google Scholar
• Pepper, J., & Weitzman, E. (2004). It takes two to talk: A practical guide for parents of children with language delays. The Hanen Centre.
   Google Scholar
• Rensfeldt Flink, A., Broberg, M., Strid, K., Thunberg, G., & Åsberg Johnels, J. (2022). Following children with severe or profound intellectual and multiple disabilities and their mothers through a communication intervention: Single-case mixed-methods findings. International Journal of Developmental Disabilities, 1–19. Advanced online publication. doi:10.1080/20473869.2022.2031778
   PubMedGoogle Scholar
• Roberts, M. Y., & Kaiser, A. P. (2011). The effectiveness of parent-implemented language interventions: A meta-analysis. American Journal of Speech-Language Pathology, 20(3), 180–199. doi:10.1044/1058-0360(2011/10-0055)
   PubMed Web of Science ®Google Scholar
• Romski, M. A., Sevcik, R. A., Adamson, L. B., Smith, A., Cheslock, M., & Bakeman, R. (2011). Parent perceptions of the language development of toddlers with developmental delays before and after participation in parent-coached language interventions. American Journal of Speech-Language Pathology, 20(2), 111–118. doi:10.1044/1058-0360(2011/09-0087)
   PubMed Web of Science ®Google Scholar
• Romski, M. A., Sevcik, R., King, M., DeLeo, G., Branum-Martin, L., & Bornman, J. (2023). Using a self-guided app to provide communication strategies for caregivers of young children with developmental disorders: A pilot investigation. Journal of Policy and Practice in Intellectual Disabilities, 20(1), 73–88. doi:10.1111/jppi.12436
   Web of Science ®Google Scholar
• Rose, T., Scarinci, N., Meyer, C., Harris, S., Forsingdal, S., Anger, N., & Webb, K. (2020). The It Takes Two to Talk® – The Hanen Program® for parents: Impacts on child behaviour and social-emotional functioning. Speech, Language and Hearing, 23(3), 180–188. doi:10.1080/2050571X.2019.1622832
   Web of Science ®Google Scholar
• Smith, A., Romski, M. A., Sevcik, R. A., Adamson, L., & Bakeman, R. (2011). Parent stress and its relation to parent perceptions of communication following parent-coached language intervention. Journal of Early Intervention, 33(2), 135–150. doi:10.1177/1053815111405526
   Web of Science ®Google Scholar
• van Keer, I., Van Leeuwen, K., & Maes, B. (2019). Exploring family activities and child engagement: A study on children with a significant cognitive and motor developmental delay. Journal of Applied Research in Intellectual Disabilities : Jarid, 32(4), 779–791. doi:10.1111/jar.12568
   PubMed Web of Science ®Google Scholar
• Wang, Y., Xiao, L., Chen, R.-S., Chen, C., Xun, G.-L., Lu, X.-Z., Shen, Y.-D., Wu, R.-R., Xia, K., Zhao, J.-P., & Ou, J.-J. (2018). Social impairment of children with autism spectrum disorder affects parental quality of life in different ways. Psychiatry Research, 266, 168–174. doi:10.1016/j.psychres.2018.05.057
   PubMed Web of Science ®Google Scholar
• Wieder, S., & Greenspan, S. I. (2006). Infant and early childhood mental health: The DIR model. In G. M. Foley & J. D. Hochman, (Eds.), Mental health in early intervention: Achieving unity in principles and practice (pp. 175–189). Paul H Brookes Publishing.
   Google Scholar
• Woods, J. J., Wilcox, M. J., Friedman, M., & Murch, T. (2011). Collaborative consultation in natural environments: Strategies to enhance family-centered supports and services. Language, Speech, and Hearing Services in Schools, 42(3), 379–392. doi:10.1044/0161-1461(2011/10-0016)
   PubMed Web of Science ®Google Scholar
• Yan, N., & Ansari, A. (2016). Child adjustment and parent functioning: Considering the role of child-driven effects. Journal of Family Psychology : Jfp : Journal of the Division of Family Psychology of the American Psychological Association (Division 43)), 30(3), 297–308. doi:10.1037/fam0000180
   PubMed Web of Science ®Google Scholar
• Ysasi, N., Becton, A., & Chen, R. (2018). Stigmatizing effects of visible versus invisible disabilities. Journal of Disability Studies, 4(1), 22–29. doi:10.1093/arclin/act118
   Google Scholar