Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

West, P., Van Riper, M., Wyatt, G., Lehto, R., Douglas, S. N., & Robbins, L. (2020). Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application. Journal of Family Nursing, 26(2), 153-178. https://doi.org/10.1177/1074840720915536

Publication date: 1 May 2020 Added to AutiHub: 27 Oct 2026 Type: Article Article language: English

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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)

Abstract

Families with children who have developmental disabilities and complex communication needs (CCNs) face challenging demands affecting family adaptation. Many children with CCNs use augmentative and alternative communication (AAC) devices to support communication, yet little is known about family adaptation to such technology. To fill this gap, an integrative review, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation was conducted to assess conceptual foundations and the state of the science of family adaptation among children utilizing AAC. Web-based searches were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis and the Mixed Methods Appraisal Tool. Thirty-three studies met eligibility. Findings demonstrated that to enhance the science underpinning family adaptation to AAC use, future research should be grounded conceptually and address important components of the Resiliency Model. Work in this emerging area will identify and facilitate nursing efforts to assist families as they adapt to communication technology.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 27 Oct 2026 10:37.

Cited references
68
With a DOI
57
Without a DOI, from raw bibliography text
11
0 / 68 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
10 / 68 (14.7%)
References with detected author names
59 / 68 (86.8%)
Without detected author names
9
Without a structured title
8
Without a stable identifier
11
References with raw author names still to review
7
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
204
From DOI or external metadata
204
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
24
19 / 204 (9.3%) names are linked to an author already present in AutiHub. 185 / 204 (90.7%) names are not yet linked.
Names linked to a person identified as autistic
0 / 204 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 19 (0.0%). Distinct people identified as autistic: 0 / 169 (0.0%).
  1. David McNaughton , Susan Balandin , Pamela Kennedy , Thor Sandmel (2010). Health transitions for youth with complex communication needs: The importance of health literacy and communication strategies . Journal of Pediatric Rehabilitation Medicine, 3(4), 311-318. SAGE Publications.
    Crossref OpenAlex OpenCitations
  2. Accardo P. J. (2003). Dictionary of developmental disabilities terminology . Dictionary of developmental disabilities terminology.
    Type: Other
    Crossref
  3. Nancy Brady , Debra Skinner , Joanne Roberts , Elizabeth Hennon (2006). Communication in Young Children With Fragile X Syndrome: A Qualitative Study of Mothers' Perspectives . American Journal of Speech-Language Pathology, 15(4), 353-364. American Speech Language Hearing Association.
    Crossref OpenAlex OpenCitations
  4. Renee L. Cachia , Angelika Anderson , Dennis W. Moore (2016). Mindfulness, Stress and Well-Being in Parents of Children with Autism Spectrum Disorder: A Systematic Review . Journal of Child and Family Studies, 25(1), 1-14. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  5. Janet Allaire , Risa Gressard , James Blackman , Sharon Hostler (1991). Children with severe speech impairments: caregiver survey of AAC use . Augmentative and Alternative Communication, 7(4), 248-255. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  6. MaryAnn Romski , Rose A. Sevcik , Lauren B. Adamson , Ashlyn Smith , Melissa Cheslock , Roger Bakeman (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. American Speech Language Hearing Association.
    Crossref OpenAlex OpenCitations
  7. (1990). Ordinary families, special children: a systems approach to childhood disability . Choice Reviews Online, 27(05), 27-2778-27-2778. American Library Association.
    OpenAlex
  8. Anna A. Allen , Howard C. Shane (2014). Autism spectrum disorders in the era of mobile technologies: Impact on caregivers . Developmental Neurorehabilitation, 17(2), 110-114. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  9. Endia J. Lindo , Karin R. Kliemann , Bertina H. Combes , Jessica Frank (2016). Managing Stress Levels of Parents of Children with Developmental Disabilities: A Meta‐Analytic Review of Interventions . Family Relations, 65(1), 207-224. Wiley.
    Crossref OpenAlex OpenCitations
  10. Cheryl Crisp , Claire Burke Draucker , Marsha L. Cirgin Ellett (2014). Barriers and facilitators to children's use of speech‐generating devices: a descriptive qualitative study of mothers' perspectives . Journal for Specialists in Pediatric Nursing, 19(3), 229-237. Wiley.
    Crossref OpenAlex OpenCitations
  11. Lisa Farinelli Allen , Elizabeth A. Babin (2013). Associations Between Caregiving, Social Support, and Well-Being Among Parents of Children With Childhood Apraxia of Speech . Health Communication, 28(6), 568-576. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  12. Ashley C. Woodman (2014). Trajectories of Stress among Parents of Children with Disabilities: A Dyadic Analysis . Family Relations, 63(1), 39-54. Wiley.
    Crossref OpenAlex OpenCitations
  13. American Speech-Language-Hearing Association. (2017). Augmentative and alternative communication. https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589942773§ion=References
    Type: Other
    Crossref
  14. Liezl Schlebusch , Shakila Dada , Alecia E. Samuels (2017). Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(7), 1966-1977. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  15. Dana K. Donohue , Juan Bornman , Mats Granlund (2015). Household size is associated with unintelligible speech in children who have intellectual disabilities: A South African study . Developmental Neurorehabilitation, 18(6), 402-406. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  16. Kate Anderson , Susan Balandin , Roger Stancliffe (2014). Australian parents’ experiences of speech generating device (SGD) service delivery . Developmental Neurorehabilitation, 17(2), 75-83. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  17. Elisabeth M. Dykens , Marisa H. Fisher , Julie Lounds Taylor , Warren Lambert , Nancy Miodrag (2014). Reducing Distress in Mothers of Children With Autism and Other Disabilities: A Randomized Trial . Pediatrics, 134(2), e454-e463. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  18. Kate Louise Anderson , Susan Balandin , Roger James Stancliffe (2015). Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists . International Journal of Speech-Language Pathology, 17(2), 185-195. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  19. Holly G. Minor , Linda E. Carlson , Michael J. Mackenzie , Kristin Zernicke , Lanice Jones (2006). Evaluation of a Mindfulness-Based Stress Reduction (MBSR) Program for Caregivers of Children with Chronic Conditions . Social Work in Health Care, 43(1), 91-109. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  20. Dianne Angelo (2000). Impact of augmentative and alternative communication devices on families . Augmentative and Alternative Communication, 16(1), 37-47. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  21. David Moher , Alessandro Liberati , Jennifer Tetzlaff , Doug Altman , The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement . PLoS Medicine, 6(7), e1000097. Public Library of Science (PLoS).
    Crossref OpenAlex OpenCitations
  22. Allison M. Meder , Jane R. Wegner (2015). iPads, Mobile Technologies, and Communication Applications: A Survey of Family Wants, Needs, and Preferences . Augmentative and Alternative Communication, 31(1), 27-36. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  23. Dianne Angelo , Sheila Jones , Stephen Kokoska (1995). Family perspective on augmentative and alternative communication: Families of young children . Augmentative and Alternative Communication, 11(3), 193-202. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  24. Janice Light , David McNaughton , David Beukelman , Susan Koch Fager , Melanie Fried-Oken , Thomas Jakobs et al. (2019). Challenges and opportunities in augmentative and alternative communication: Research and technology development to enhance communication and participation for individuals with complex communication needs . Augmentative and Alternative Communication, 35(1), 1-12. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  25. Orit Hetzroni (2002). Augmentative and Alternative Communication in Israel: results from a family survey . Augmentative and Alternative Communication, 18(4), 255-266. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  26. Dianne Angelo , Stephen Kokoska , Sheila Jones (1996). Family perspective on augmentative and alternative communication: families of adolescents and young adults . Augmentative and Alternative Communication, 12(1), 13-22. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  27. Christine Holyfield , Kathryn D. R. Drager , Jennifer M. D. Kremkow , Janice Light (2017). Systematic review of AAC intervention research for adolescents and adults with autism spectrum disorder . Augmentative and Alternative Communication, 33(4), 201-212. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  28. Rita L. Bailey , Howard P. Parette , Julia B. Stoner , Maureen E. Angell , Kathleen Carroll (2006). Family Members' Perceptions of Augmentative and Alternative Communication Device Use . Language, Speech, and Hearing Services in Schools, 37(1), 50-60. American Speech Language Hearing Association.
    Crossref OpenAlex OpenCitations
  29. Susheel Joginder Singh , Nur Hazirah Hussein , Rahayu Mustaffa Kamal , Fatimah Hani Hassan (2017). Reflections of Malaysian parents of children with developmental disabilities on their experiences with AAC . Augmentative and Alternative Communication, 33(2), 110-120. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  30. Beata Batorowicz , Fiona Campbell , Stephen von Tetzchner , Gillian King , Cheryl Missiuna (2014). Social Participation of School-aged Children Who Use Communication Aids: The Views of Children and Parents . Augmentative and Alternative Communication, 30(3), 237-251. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  31. Kelsey Mandak , Tara O’Neill , Janice Light , Gregory M. Fosco (2017). Bridging the gap from values to actions: a family systems framework for family-centered AAC services . Augmentative and Alternative Communication, 33(1), 32-41. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  32. Sheila Dove Jones , Dianne H. Angelo , Stephen M. Kokoska (1998). Stressors and Family Supports: Families with Children Using Augmentative & Alternative Communication Technology . Journal of Children's Communication Development, 20(2), 37-44. SAGE Publications.
    Crossref OpenAlex OpenCitations
  33. Cathy Binger , Janice Light (2006). Demographics of Preschoolers Who Require AAC . Language, Speech, and Hearing Services in Schools, 37(3), 200-208. American Speech Language Hearing Association.
    Crossref OpenAlex OpenCitations
  34. Blosser J. L. (1994). bibr14-1074840720915536 Clinics in Communication Disorders, 4(4), 246.
    Type: Other
    Crossref
  35. Borg S., Agius M., Agius L. (2015). A user and their family’s perspective of the use of a low-tech vs a high-tech AAC system. Studies in Health Technology and Informatics, 217, 811–818. https://doi.org/10 . 3233/978-1-61499-566-1-811
    Type: Other
    Crossref
  36. David McNaughton , Janice Light (2013). The iPad and Mobile Technology Revolution: Benefits and Challenges for Individuals who require Augmentative and Alternative Communication . Augmentative and Alternative Communication, 29(2), 107-116. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  37. Juliet Goldbart , Julie Marshall (2004). "Pushes and Pulls" on the Parents of Children who use AAC . Augmentative and Alternative Communication, 20(4), 194-208. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  38. H. Bourke‐Taylor , C. Cotter , R. Stephan (2014). Young children with cerebral palsy: families self‐reported equipment needs and out‐of‐pocket expenditure . Child: Care, Health and Development, 40(5), 654-662. Wiley.
    Crossref OpenAlex OpenCitations
  39. David McNaughton , Tracy Rackensperger , Elizabeth Benedek-Wood , Carole Krezman , Michael B. Williams , Janice Light (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(1), 43-55. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  40. Bronwyn Hemsley , Melissa Kuek , Kaely Bastock , Nerina Scarinci , Bronwyn Davidson (2013). Parents and children with cerebral palsy discuss communication needs in hospital . Developmental Neurorehabilitation, 16(6), 363-374. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  41. M.T. Clarke , C. Newton , T. Griffiths , K. Price , A. Lysley , K.V. Petrides (2011). Factors associated with the participation of children with complex communication needs . Research in Developmental Disabilities, 32(2), 774-780. Elsevier BV.
    Crossref OpenAlex OpenCitations
  42. Centers for Disease Control and Prevention. (2015). Developmental disabilities. https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html
    Type: Other
    Crossref
  43. M Shannon McCord , Gloria Soto (2004). Perceptions of AAC: An Ethnographic Investigation of Mexican-American Families . Augmentative and Alternative Communication, 20(4), 209-227. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  44. Gillian King , Mary Ann Tucker , Patricia Baldwin , Karen Lowry , John Laporta , Louisa Martens (2002). A Life Needs Model of Pediatric Service Delivery . Physical & Occupational Therapy In Pediatrics, 22(2), 53-77. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  45. Covidence. (2018). Systematic review software. Veritas Health Innovation, Melbourne, Australia. https://www.covidence.org
    Type: Other
    Crossref
  46. Romina Pace , Pierre Pluye , Gillian Bartlett , Ann C. Macaulay , Jon Salsberg , Justin Jagosh et al. (2012). Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review . International Journal of Nursing Studies, 49(1), 47-53. Elsevier BV.
    Crossref OpenAlex OpenCitations
  47. David Moher , Alessandro Liberati , Jennifer Tetzlaff , Doug Altman (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement . Journal of Clinical Epidemiology, 62(10), 1006-1012. Elsevier BV.
    Crossref OpenAlex OpenCitations
  48. Alessandro Liberati , Doug Altman , Jennifer Tetzlaff , Cynthia Mulrow , Peter C. Gøtzsche , John P.A. Ioannidis et al. (2009). The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration . Journal of Clinical Epidemiology, 62(10), e1-e34. Elsevier BV.
    OpenCitations
  49. Elizabeth C. Serpentine , Balazs Tarnai , Kathryn D. R. Drager , Erinn H. Finke (2011). Decision Making of Parents of Children With Autism Spectrum Disorder Concerning Augmentative and Alternative Communication in Hungary . Communication Disorders Quarterly, 32(4), 221-231. SAGE Publications.
    Crossref OpenAlex OpenCitations
  50. Hebbeler K., Spiker E., Bailey D., Scarborough A., Malik S., Simensson R., Singer M., Nelson L. (2007). Early intervention for infants and toddlers with disabilities and their families: Participants, services, and outcomes [Final report of the National Early Intervention Longitudinal study]. https://archive.sri.com/sites/default/files/publications/neils_finalreport_200702.pdf
    Type: Other
    Crossref
  51. Robin Whittemore , Kathleen Knafl (2005). The integrative review: updated methodology . Journal of Advanced Nursing, 52(5), 546-553. Wiley.
    Crossref OpenAlex OpenCitations
  52. Marcia Van Riper (2000). Family Variables Associated With Well-Being in Siblings of Children With Down Syndrome . Journal of Family Nursing, 6(3), 267-286. SAGE Publications.
    Crossref OpenAlex OpenCitations
  53. Mary Blake Huer , Howard P. Parette , Terry Irvine Saenz (2001). Conversations with Mexican Americans Regarding Children with Disabilities and Augmentative and Alternative Communication . Communication Disorders Quarterly, 22(4), 197-206. SAGE Publications.
    Crossref OpenAlex OpenCitations
  54. International Family Nursing Association (IFNA). (2018). IFNA Position Statement on Graduate Education. https://internationalfamilynursing.org/2018/06/28/graduate-family-nursing-education/
    Type: Other
    Crossref
  55. Cristina Mei , Sheena Reilly , Dinah Reddihough , Fiona Mensah , Julie Green , Lindsay Pennington et al. (2015). Activities and participation of children with cerebral palsy: parent perspectives . Disability and Rehabilitation, 37(23), 2164-2173. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  56. Janice Light , David McNaughton (2012). Supporting the Communication, Language, and Literacy Development of Children with Complex Communication Needs: State of the Science and Future Research Priorities . Assistive Technology, 24(1), 34-44. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  57. Gunilla Thunberg , Margret Buchholz , Stefan Nilsson (2016). Strategies that assist children with communicative disability during hospital stay . Journal of Child Health Care, 20(2), 224-233. SAGE Publications.
    Crossref OpenAlex OpenCitations
  58. Julie Marshall , Juliet Goldbart (2008). ‘Communication is everything I think.’ Parenting a child who needs Augmentative and Alternative Communication (AAC) . International Journal of Language & Communication Disorders, 43(1), 77-98. Wiley.
    Crossref OpenAlex OpenCitations
  59. L. Schlebusch , A. E. Samuels , S. Dada (2016). South African families raising children with autism spectrum disorders: relationship between family routines, cognitive appraisal and family quality of life . Journal of Intellectual Disability Research, 60(5), 412-423. Wiley.
    Crossref OpenAlex OpenCitations
  60. Borg S. , Agius M. , Agius L. (2015). A User and Their Family's Perspective of The Use of a Low-Tech Vs A High-Tech AAC System . In Studies in Health Technology and Informatics (pp. 811-8). IOS Press.
    OpenAlex
  61. McCubbin M. A. (1996). Family assessment: Resiliency, coping and adaptation . Family assessment: Resiliency, coping and adaptation.
    Type: Other
    Crossref
  62. Gillian King , Mary Ann Tucker , Patricia Baldwin , Karen Lowry , John Laporta , Louisa Martens (2002). A Life Needs Model of Pediatric Service Delivery . Physical & Occupational Therapy In Pediatrics, 22(2), 53-77. Informa UK Limited.
    Type: Article DOI: 10.1300/j006v22n02_04
    OpenCitations
  63. Vicki A. McGinley , Melina Alexander (2018). Parents and Families of Students With Special Needs: Collaborating Across the Age Span . SAGE Publications, Inc..
    Crossref OpenAlex OpenCitations
  64. Sheela Stuart , Howard Parette, Jr. (2002). Native Americans and Augmentative and Alternative Communication Issues . Multiple Voices for Ethnically Diverse Exceptional Learners, 5(1), 38-53. Great Lakes Equity Center.
    Crossref OpenAlex OpenCitations
  65. Howard P. Parette , Mary Jane Brotherson , Mary Blake Huer (2000). Giving Families a Voice in Augmentative and Alternative Communication Decision-Making . Education and Training in Mental Retardation and Developmental Disabilities, 35(2), 177-190. SAGE Publications.
    Type: Article DOI: 10.1177/215416470003500206
    Crossref
  66. Pluye P., Robert E., Cargo M., Bartlett G., O’Cathain A., Griffiths F., Boardman F., Gagnon M. P., Rousseau M. C. (2011). Proposal: A mixed methods appraisal tool for systematic mixed studies reviews. http://mixedmethodsappraisaltoolpublic.pbworks.com
    Type: Other
    Crossref
  67. (2003). Dictionary of developmental disabilities terminology . Choice Reviews Online, 40(05), 40-2551-40-2551. American Library Association.
    OpenAlex
  68. Seligman M. (2007). Ordinary families, special children: A systems approach to childhood disability . Ordinary families, special children: A systems approach to childhood disability.
    Type: Other
    Crossref