A Survey of Parents of Children With Cortical or Cerebral Visual Impairment: 2018 Follow-up

Jackel, Bernadette

doi:10.1016/j.spen.2019.05.002

Cited by 9 publications

(6 citation statements)

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“…We suggest the Top-11 is a potentially discriminative tool for measuring HVFDs in children with CVI, i.e., a measure of CVI-related impairment. The Top-11 discriminating question items from our results ( Figures 1 , 2 ) covers a range of behaviors suggesting HVFDs as generally reported for children with CVI ( Dutton et al, 1996 ; Bax, 2010 ; Jackel et al, 2010 ; Sakki et al, 2018 ; Gorrie et al, 2019 ; Jackel, 2019 ; Lueck et al, 2019 ). The 11 most discriminating questions elicited HVFDs in awareness of lower visual field, distance viewing, finding objects in environmental clutter, multiple task management (central attention) and motion perception despite good visual acuity in these children.…”

Section: Discussionsupporting

confidence: 68%

Higher Visual Function Deficits in Children With Cerebral Visual Impairment and Good Visual Acuity

Chandna

Ghahghaei

Foster

et al. 2021

Front. Hum. Neurosci.

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In clinical practice Cerebral Visual Impairment (CVI) is typically diagnosed by observation of abnormal visually guided behaviors which indicate higher visual function deficits (HVFDs) suggesting abnormal brain development or brain damage in a child with a suitable clinical history. HVFDs can occur even in the presence of good visual acuity and may remain undiagnosed because the good visual acuity does not prompt further investigation. This leads to a lack of understanding of the child’s visual perceptual difficulties. In a prospective study, we determined the spectrum of HVFDs in a group of children with history suggestive of brain damage or disruption of brain development and an independent diagnosis of CVI in comparison with typically developing children with a structured 51 question inventory, the Higher Visual Function Question Inventory (HVFQI-51) adapted from the Cerebral Vision Impairment Inventory, CVI-I. Here, we show that the HVFQI-51 can detect a range of HVFDs in children with CVI with good visual acuity and clearly distinguishes these children from typically developing children. HVFDs in our study group could mostly be attributed to dorsal stream visual processing dysfunction though the spectrum varied between children. We report on the inclusion of the “not applicable” response option in analysis providing a picture of HVFDs more in tune with the overall disability of each child. We also propose a subset of 11 questions (Top-11) which discriminate between children with CVI vs. behaviors seen in typical children: this provides both a potential screening tool for initial assessment of HVFDs and a measure of CVI-related impairment, and needs further validation in a secondary independent sample.

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Section: Discussionsupporting

confidence: 68%

Higher Visual Function Deficits in Children With Cerebral Visual Impairment and Good Visual Acuity

Chandna

Ghahghaei

Foster

et al. 2021

Front. Hum. Neurosci.

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“…The themes reported highlighted many similarities within families' experiences of everyday life despite the wide geographical area and range of additional diagnoses. Our findings resonate with families' experiences reported in earlier work (McKillop et al, 2006;Jackel et al, 2010;Jackel, 2019) indicating the continued nature of challenges families still face.…”

Section: Discussionsupporting

confidence: 89%

“…Recent work with families where children and young people have visual impairments demonstrates the importance of listening to and understanding families’, children’s, and young people’s experiences ( Tadić et al, 2015 ; Liebermann et al, 2017 ; Anderson et al, 2019 ). Two surveys (initial and follow up) of parents of children with CVI, demonstrated persistent difficulties with obtaining a diagnosis and access to appropriate support ( Jackel et al, 2010 ; Jackel, 2019 ). The aim of the current study was to understand the broad impacts of CVI for families using qualitative interviews.…”

Section: Introductionmentioning

confidence: 99%

Bridging the Gap: Parent and Child Perspectives of Living With Cerebral Visual Impairments

Goodenough

Pease

Williams

2021

Front. Hum. Neurosci.

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Cerebral Visual Impairment (CVI) is an umbrella term which includes abnormalities in visual acuity, or contrast sensitivity or colour; ocular motility; visual field and the conscious and unconscious filtering or processing of visual input. Children with CVI have specific needs and problems relating to their development from infancy to adulthood which can impact on their wellbeing. Recent research indicates the complexities of living with CVI but there remains limited information of the full impact of CVI on families’ everyday lives. The qualitative interviews reported here explored families’ experiences to discover the impact of CVI on all aspects of everyday life. Parents and children (aged 6–18) were invited to participate in semi-structured interviews, either face to face, by phone or video call between January 2018 and February 2019. Topics covered everyday practicalities of living with CVI, focusing on challenges and what worked well at school and home. Interviews were audio-recorded and subject to thematic analysis to look for patterns across the data. Twenty families took part in interviews, with eight children/young people within those families contributing interviews of their own. Four themes were developed from the interviews: (1) Assessment and understanding implications of CVI, (2) Education, (3) Family life, (4) Psychological wellbeing and quality of life. The interviews provide valuable insights into the impact of living with CVI and highlight the need for more awareness of the condition among professionals in both health and education settings.

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“…Yet, while a majority of parents reported that their children received services from SLPs, occupational therapists (OTs), and physical therapists (PTs) on a weekly basis, 42% of the parents indicated their children received "consult only" or "no" services from a TVI and 47% indicated their children received "no" O&M services at all. This finding is consistent with reports from Jackel (2019;Jackel et al, 2010), in which parents reported being "on their own" in terms of learning about and accessing services for CVI. However, the finding takes on particular urgency for the children in this study who require AAC, given the critical importance of the effects of CVI for learning and successful use of visual forms of AAC.…”

Section: Gaps Between Needs and Servicessupporting

confidence: 91%

“…Parents reported that they felt they had to fight to get a diagnosis of CVI and that they were "on their own" in learning about visual impairment, finding appropriate services for their children, and educating their children's teachers and other service providers about CVI. In a follow-up survey a decade later, Jackel (2019) reported that parents were now more likely to get a timely diagnosis of CVI from a medical professional (ophthalmologist, optometrist, neurologist), but they continued to raise concerns about the lack of support their children received in their educational programs. Parents rated their child's Teacher of the Visually Impaired (TVI) as "competent" but rated their children's teachers (regular and special education) as "not competent."…”

mentioning

confidence: 99%

Children With Cortical Visual Impairment and Complex Communication Needs: Identifying Gaps Between Needs and Current Practice

Blackstone

Luo

Canchola³

et al. 2021

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Purpose This scoping study sought to establish a baseline for how well the needs of children with cortical visual impairment (CVI) who use augmentative and alternative communication (AAC) are currently aligned with the services available to them. CVI is the most common cause of visual impairment in children today, and AAC methods rely heavily on vision. Yet, the prevalence of CVI in children who use AAC methods is not yet known, and there is virtually no research concerning use of AAC with children with CVI. Our overarching goals were to identify barriers and suggest priorities for improving outcomes for these children. Method Surveys were distributed anonymously online to professionals from multiple disciplines in different school-based settings and to parents of children with CVI who use AAC. Results School-based professionals identified many barriers, including a lack of knowledge and skills about CVI and about AAC, limited access to training and experts, and concerns about services being delivered in isolated silos with limited time allotted for interprofessional collaboration and planning. Parent reported that their children ( M age = 11 years) continued to rely predominantly on body-based forms of communication and lacked access to symbolic language, which, in AAC, is primarily visually based. Conclusions The barriers to services identified by school-based professionals indicate a need to develop and disseminate reliable information about CVI and AAC, both at a preservice and in-service level and, while doing so, to respect the diversity of stakeholders who need this information, including parents. Future research on what types of AAC approaches support the development of language and communication skills for children with CVI is essential.

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A Survey of Parents of Children With Cortical or Cerebral Visual Impairment: 2018 Follow-up

Cited by 9 publications

References 1 publication

Higher Visual Function Deficits in Children With Cerebral Visual Impairment and Good Visual Acuity

Higher Visual Function Deficits in Children With Cerebral Visual Impairment and Good Visual Acuity

Bridging the Gap: Parent and Child Perspectives of Living With Cerebral Visual Impairments

Children With Cortical Visual Impairment and Complex Communication Needs: Identifying Gaps Between Needs and Current Practice

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