Parent Perspectives on Augmentative and Alternative Communication Integration for Children With Fragile X Syndrome: It Starts in the Home

Schladant, Michelle; Dowling, Monica

doi:10.1352/1934-9556-58.5.409

Cited by 10 publications

(6 citation statements)

References 33 publications

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“…The investigation exposed 3 main systemic gaps that may limit the successful integration of AAC in the home including (1) failure to consider unique aspects of the family context, (2) limitations of AAC technologies, and (3) inadequate knowledge of FXS and AAC among practitioners. 105 …”

Section: Resultsmentioning

confidence: 99%

Research Gaps in Fragile X Syndrome: An Updated Literature Review to Inform Clinical and Public Health Practice

Raspa

Wheeler

Okoniewski

et al. 2022

J Dev Behav Pediatr

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Objective: The phenotypic impact of fragile X syndrome (FXS) has been well-documented since the discovery of the fragile X messenger ribonucleoprotein 1 gene 30 years ago. However, gaps remain in clinical and public health research. The purpose of this literature review was to determine the extent to which these gaps have been addressed and identify targeted areas of future research. Methods: We conducted an electronic search of several scientific databases using a variety of key words. The search focused on 5 areas identified as research gaps by an earlier review: (1) diagnosis, (2) phenotypic presentation, (3) familial impact, (4) interventions and treatments, and (5) life span perspectives. Inclusion criteria included publication between 2014 and 2020, focus on human subjects, and publication in English. A total of 480 articles were identified, 365 were reviewed, and 112 are summarized in this review. Results: Results are organized into the following categories: (1) FXS phenotype and subtypes (FXS subtypes, medical profile, cognitive/developmental profile, social and behavioral profile); (2) needs of adults; (3) public health needs (clinical diagnosis and newborn screening, health care needs, and access); ( 4) treatment (treatment priorities, pharmacological treatments, and behavioral and educational interventions); and (5) families (economic burden and mother-child relationship). Conclusion: Despite the progress in many areas of FXS research, work remains to address gaps in clinical and public health knowledge. We pose 3 main areas of focused research, including early detection and diagnosis, determinants of health, and development and implementation of targeted interventions.

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Section: Resultsmentioning

confidence: 99%

Research Gaps in Fragile X Syndrome: An Updated Literature Review to Inform Clinical and Public Health Practice

Raspa

Wheeler

Okoniewski

et al. 2022

J Dev Behav Pediatr

View full text Add to dashboard Cite

show abstract

“…Parents conveyed their perceptions about the usability and acceptance of the use of AAC by their children. Overall, the results were mixed [23,24,28,32,33,38,41]. Some families perceived AAC systems positively across parents from dissimilar socio-economic backgrounds.…”

Section: Theme 2 Aac Systems Subtheme 5: Usability and Acceptabilitymentioning

confidence: 93%

“…[23] (p. 78) Moreover, they mentioned some regulations that limited the use of AAC devices, as when insurance is not valid in another country. Subtheme 3: Service Providers' Support Parents expressed their perceptions of service providers: SLPs, therapists, and other professionals [23,34,35,[37][38][39]. In general parents advocated for better training and preparation of therapists before working with complex AAC systems.…”

Section: Thematic Synthesismentioning

confidence: 99%

“…he will just go up to them and he'll tap them and he'll show you what he wants." [38] (p. 413) Parents reported that these AAC tools were particularly useful in helping their children make simple requests: "child does not have to work hard to get point across' and knows what she is reaching for." [28] (p. 561)…”

Section: Theme 2 Aac Systems Subtheme 5: Usability and Acceptabilitymentioning

confidence: 99%

“…For example, they expressed their "difficulties sourcing pictures" for low-technology systems such as communication books and PECS. Therefore, parents felt frustrated because their responsibilities increased after the introduction of AAC [24,26,27,[29][30][31][32]35,[38][39][40]: "I work full-time as a nurse, and my husband works full-time, and three kids and two older kids who are running in six directions. And unfortunately, we probably fall short of making time [to support AAC use]."…”

Section: Theme 3 Integration Of Aac In Daily Life Subtheme 8: Familymentioning

confidence: 99%

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Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis

Berenguer

Martínez

Stasio

et al. 2022

IJERPH

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Augmentative and alternative communication (AAC) consists of any method of communicating that supplements or completely substitutes oral and/or written language when it is impaired. Therefore, it enables children with complex communication needs to develop their full communicative potential. However, despite the many benefits of AAC and its widespread use, several review studies have underscored the problems faced by parents and children who use AAC in their daily lives. The general objective of this systematic review and qualitative meta-synthesis is to provide a complete overview of parents’ experiences and perceptions with their children’s use of AAC. Specifically, it aimed to identify common themes and subthemes of interest and to analyze the research quality of the selected studies. An exhaustive literature search was carried out using different electronic databases. Nineteen studies were included, involving 297 parents. A thematic synthesis was undertaken. Three main themes and nine subthemes were identified: service support (accessibility, providers and coordination); characteristics of AAC systems (usability and acceptability, features, cost and funding); and integration of AAC in daily life (family, school, social and community). Findings raise a need for more services that support children with complex communication deficits in different contexts, more functional use of AAC systems at school and in real-world situations, as well as service assistance over an extended time period.

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Physical education system and training framework based on human–computer interaction for augmentative and alternative communication

wenjuan

Premalatha²,

Aiswarya

2022

Int J Speech Technol

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Parent Perspectives on Augmentative and Alternative Communication Integration for Children With Fragile X Syndrome: It Starts in the Home

Cited by 10 publications

References 33 publications

Research Gaps in Fragile X Syndrome: An Updated Literature Review to Inform Clinical and Public Health Practice

Research Gaps in Fragile X Syndrome: An Updated Literature Review to Inform Clinical and Public Health Practice

Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis

Physical education system and training framework based on human–computer interaction for augmentative and alternative communication

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