TY - JOUR
T1 - “It’s like a guessing game all the time”
T2 - parent insights on barriers, supports, and priorities for children with cortical visual impairment and complex communication needs
AU - McCarty, Tara V.
AU - Light, Janice C.
N1 - Publisher Copyright:
© 2023 International Society for Augmentative and Alternative Communication.
PY - 2023
Y1 - 2023
N2 - Parents of children with both cortical visual impairment (CVI) and complex communication needs offer unique perspectives on their children’s journeys to receiving proper diagnoses, supports, and interventions, such as augmentative and alternative communication (AAC). This study explored the lived experiences, supports, and barriers identified by parents through a qualitative phenomenological approach. Nine parents of children with both CVI and complex communication needs were interviewed virtually. Results indicated five themes descriptive of the parents’ experiences: Challenges Piecing Together a CVI Diagnosis; Dealing with Low Expectations of Others; Parents Empowered to Take Action; Guessing Game to Determine Appropriate AAC to Accommodate CVI; and Aligning Professional Practice with Parent Priorities. Whereas some of these themes echoed the experiences of parents of children with complex communication needs (such as those with cerebral palsy) who were not specifically diagnosed with CVI, other themes were unique to this set of parents including the uncertainty of AAC design and intervention given the challenges of CVI and the necessity of more than one way for children to communicate given their visual challenges. This study highlighted the dire need for continued investigation to determine effective AAC interventions for individuals with CVI.
AB - Parents of children with both cortical visual impairment (CVI) and complex communication needs offer unique perspectives on their children’s journeys to receiving proper diagnoses, supports, and interventions, such as augmentative and alternative communication (AAC). This study explored the lived experiences, supports, and barriers identified by parents through a qualitative phenomenological approach. Nine parents of children with both CVI and complex communication needs were interviewed virtually. Results indicated five themes descriptive of the parents’ experiences: Challenges Piecing Together a CVI Diagnosis; Dealing with Low Expectations of Others; Parents Empowered to Take Action; Guessing Game to Determine Appropriate AAC to Accommodate CVI; and Aligning Professional Practice with Parent Priorities. Whereas some of these themes echoed the experiences of parents of children with complex communication needs (such as those with cerebral palsy) who were not specifically diagnosed with CVI, other themes were unique to this set of parents including the uncertainty of AAC design and intervention given the challenges of CVI and the necessity of more than one way for children to communicate given their visual challenges. This study highlighted the dire need for continued investigation to determine effective AAC interventions for individuals with CVI.
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U2 - 10.1080/07434618.2023.2206904
DO - 10.1080/07434618.2023.2206904
M3 - Article
C2 - 37158794
AN - SCOPUS:85158979822
SN - 0743-4618
VL - 39
SP - 256
EP - 269
JO - AAC: Augmentative and Alternative Communication
JF - AAC: Augmentative and Alternative Communication
IS - 4
ER -