“I've had a love-hate, I mean mostly hate relationship with these PODD books”: parent perceptions of how they and their child contributed to AAC rejection and abandonment

References

• Thomas-Stonell N, Robertson B, Oddson B, et al. Communicative participation changes in pre-school children receiving augmentative and alternative communication intervention. Int J Speech Lang Pathol. 2016;18:32.
   PubMed Web of Science ®Google Scholar
• Beukelman DR, Mirenda P. Augmentative & alternative communication: supporting children and adults with complex communication needs. 4th ed. Baltimore: Brookes Pub; 2013.
   Google Scholar
• Granlund M, BjÖrck-ÅKesson E, Wilder J, et al. AAC interventions for children in a family environment: implementing evidence in practice. Augment Altern Commun. 2008;24:207–219.
   PubMed Web of Science ®Google Scholar
• Speech Pathology Australia. Augmentative and alternative communication clinical guideline. Melbourne, Australia: The Speech Pathology Association of Australia Limited; 2012.
   Google Scholar
• Johnson JM, Inglebret E, Jones C, et al. Perspectives of speech language pathologists regarding success versus abandonment of AAC. Augment Altern Commun. 2006;22:85–99.
   PubMed Web of Science ®Google Scholar
• Moorcroft A, Scarinci N, Meyer C. Speech-language pathologist perspectives on the acceptance versus rejection or abandonment of AAC systems for children with complex communication needs. Augment Altern Commun. 2019. (in press).
   PubMed Web of Science ®Google Scholar
• Bailey R, Parette H, Stoner J, et al. Family members' perceptions of augmentative and alternative communication device use. LSHSS. 2006;37:50–60.
   Google Scholar
• Goldbart J, Marshall J. "Pushes and Pulls" on the parents of children who use AAC. Augment Altern Commun. 2004;20:194–208.
   Google Scholar
• Lindsay S. Perceptions of health care workers prescribing augmentative and alternative communication devices to children. Disabil Rehabil Assist Technol. 2010;5:209–222.
   PubMedGoogle Scholar
• Baxter S, Enderby P, Evans P, et al. Barriers and facilitators to the use of high‐technology augmentative and alternative communication devices: a systematic review and qualitative synthesis. Int J Lang Commun Disord. 2012;47:115–129.
   PubMed Web of Science ®Google Scholar
• Moorcroft A, Scarinci N, Meyer C. A systematic review of the barriers and facilitators to the provision and use of low-tech and unaided AAC systems for people with complex communication needs and their families. Disabil Rehabil Assist Technol. 2018;1–22.
   PubMed Web of Science ®Google Scholar
• Parette H, Brotherson M, Huer M. Giving families a voice in augmentative and alternative communication decision-making. Educ Train Ment Retard Dev Disabil. 2000;35:177–190.
   Google Scholar
• World Health Organization. International classification of functioning, disability and health. Geneva: Switzerland: World Health Organization; 2001.
   Google Scholar
• Hines M, Balandin S, Togher L. Communication and AAC in the lives of adults with autism: the stories of their older parents. Augment Altern Commun. 2011;27:256–266.
   PubMed Web of Science ®Google Scholar
• Murphy J. 'I prefer contact this close': perceptions of AAC by people with motor neurone disease and their communication partners. Augment Altern Commun. 2004;20:259–271.
   Google Scholar
• Pati D, Colorafi KJ, Evans B. Qualitative descriptive methods in health science research. HERD. 2016;9:16–25.
   Google Scholar
• Patton MQ. Qualitative research & evaluation methods: integrating theory and practice. 4th ed. Thousand Oaks, CA: SAGE Publications, Inc.; 2015.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Moorcroft A, Scarinci N, Meyer C. “We were just kind of handed it and then it was smoke bombed by everyone”: how do external stakeholders contribute to parent rejection and abandonment of AAC systems? Forthcoming.
   Google Scholar
• Piggot J, Paterson J, Hocking C. Participation in home therapy programs for children with cerebral palsy: a compelling challenge. Qual Health Res. 2002;12:1112–1129.
   PubMed Web of Science ®Google Scholar
• Simon JB, Murphy JJ, Smith SM. Understanding and fostering family resilience. Family J. 2005;13:427–436.
   Google Scholar
• Ferrand A, Gorgos A, Ali N, et al. Resilience rather than medical factors: how parents predict quality of life of their sick newborn (Report). J Pediatr. 2018;200:64.
   PubMed Web of Science ®Google Scholar
• McConnell D, Savage A, Breitkreuz R. Resilience in families raising children with disabilities and behavior problems. Res Dev Disabil. 2014;35:833–848.
   PubMed Web of Science ®Google Scholar
• Whittingham K, Wee D, Sanders M, et al. Responding to the challenges of parenting a child with cerebral palsy: a focus group. Disabil Rehabil. 2011;33:1557–1567.
   PubMed Web of Science ®Google Scholar
• Ward KD, Chiarello LA, Bartlett DJ, et al. Ease of caregiving for children: a measure of parent perceptions of the physical demands of caregiving for young children with cerebral palsy. Res Dev Disabil. 2014;35:3403–3415.
   PubMed Web of Science ®Google Scholar
• Cress C. Augmentative and alternative communication and language: understanding and responding to parents' perspectives. Top Lang Disor. 2004;24:51–61.
   Web of Science ®Google Scholar
• Dewart H, Summers S. The pragmatics profile of everyday communication skills in children. Revised ed. London: GL Assessment; 1995.
   Google Scholar
• Romski M, Sevcik R. Augmentative communication and early intervention: myths and realities. Infants Young Childr. 2005;18:174–185.
   Web of Science ®Google Scholar
• Cress C, Marvin C. Common questions about AAC services in early intervention. Augment Altern Commun. 2003;19:254–272.
   Google Scholar
• Drager K, Light J, McNaughton D. Effects of AAC interventions on communication and language for young children with complex communication needs. J Pediatr Rehabil Med. 2010;3:303.
   PubMedGoogle Scholar
• Light J, Page R, Curran J, et al. Children's ideas for the design of AAC assistive technologies for young children with complex communication needs. Augment Altern Commun. 2007;23:274–287.
   PubMed Web of Science ®Google Scholar
• Beck AR, Bock S, Thompson JR, et al. Is awesome really awesome? How the inclusion of informal terms on an AAC device influences children's attitudes toward peers who use AAC. Res Dev Disabil. 2006;27:56–69.
   PubMed Web of Science ®Google Scholar
• Epley P, Summers JA, Turnbull A. Characteristics and trends in family-centered conceptualizations. J Fam Soc Work. 2010;13:269–285.
   Google Scholar
• Gauntlett-Gilbert J, Clinch J, Connell H, et al. G289 Increasing parent resilience in chronic paediatric conditions: the case of chronic pain. Arch Dis Child. 2015;100:A121.2–A122.
   Google Scholar
• Haji Seyed J, Soltani P. Behavioral modification of parents with the Barkley method to increase resilience of mothers of children with attention deficit/hyperactivity disorder. Biotechnol Health Sci. 2015;2.
   Google Scholar
• Allen RI, Petr CG. Toward developing standards and measurements for family-centered practice in family support programs. In: Singer GHS, Powers LE, Olson AL, editors. Redefining family support. Baltimore: Paul H. Brookes Publishing Co; 1996. p. 57–84.
   Google Scholar