Power is knowledge: empowering parents of children with cerebral visual impairment

McDowell, Nicola

doi:10.1080/09687599.2020.1751586

Cited by 19 publications

(16 citation statements)

References 29 publications

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“…The detection of HVFDs is difficult as young children with CVI cannot self-report and, older children are usually agnostic of their HVFDs as they have not lost an ability—they never developed the function ( they know not what they know not ). In addition, the presence of good visual acuity which often precludes further investigations ( Sakki et al, 2018 ), the lack of readily available tools ( Gorrie et al, 2019 ) or the knowledge and understanding of manifestations of CVI amongst clinicians and teachers ( Fielder et al, 1993 ; Youngson-Reilly et al, 1994 ; McDowell, 2020 ) adds to the challenges of identifying HVFDs. However, diagnosing HVFDs is essential since they can cause significant visual disability in everyday activities and education especially, while visual acuity remains largely intact ( Mercuri et al, 1998 ; Dutton and Jacobson, 2001 ; Fazzi et al, 2007 ; Saidkasimova et al, 2007 ; van Genderen et al, 2012 ).…”

Section: Introductionmentioning

confidence: 99%

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: Introductionmentioning

confidence: 99%

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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“…A recent review of quality of life in parents (whose children had a range of visual impairments) concluded that that parents require better and more extensive information and guidance to understand the diagnosis of their child’s condition, more information about resources and services available and support to manage and adjust to the situation’ ( Lupón et al, 2018 ). McDowell (2020) also notes how crucial timely, accurate and informed diagnosis is to enable parents to become advocates for their child ( McDowell, 2020 ).…”

Section: Discussionmentioning

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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“…Interestingly, websites signposted to parents by professionals were identified as the most used source of information. However, in the same study it was reported that the parents who were identified as "least informed", (those parents who did not received any information) used other parents as their most common resource for additional information (McDowell, 2020). By contrast, the parents who were identified as "informed", were found to prefer professionals as a source of information over other parents.…”

Section: Introductionmentioning

confidence: 92%

“…Grief, trauma and significant levels of stress have all been reported as parental issues within the first year of raising a child with disabilities (Young et al, 2020). One way of supporting parents through this difficult time has been to empower them with understandable information, with signposting to organisations and charities that can help and support families with children who have CVI (McDowell, 2020). However, the literature shows that this may not be happening due to a lack of understanding of CVI within the health practitioner community itself (Jackel et al, 2010;Martin et al, 2016;Gorrie et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Cerebral Visual Impairment on the Web: An Exploration of an Educational Web Resource as a Bridge to Public Understanding

Ravenscroft

Tracy²,

Blaikie³

2021

Front. Commun.

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Cerebral Visual Impairment (CVI) is the most common form of childhood visual impairment. Yet it remains the least well understood by parents and professionals alike. There is an urgent need to provide a bridge between academic knowledge concerning CVI, and to give a practical understanding of the condition to those affected, parents, carers, and professionals alike so that a common language can be shared between patients, their carers and professionals. The wide ranging manifestations of CVI, and the lack of accessible well recognised terms to describe it, render it difficult to understand how someone with their own unique form of CVI actually “sees”. However, with graded progressive explanation, knowledge can be gained, leading to an understanding of the visual effects of CVI from the perspective of those affected. The current position of limited understanding of the condition presents a major challenge for health and education professionals: How does one bring about the requisite CVI literacy, to render the subject accessible to families, affected children and adults, and the public?One way of doing this is by means of a plain language, multi-media resource, hosted on a publicly available website, driven by a partnership of adults with CVI, parents of children with the condition and experienced professionals from around the world, including those from the vision sciences and education. Within this context, we have explored the website resource of the not-for-profit organisation CVI Scotland (https://cviscotland.org/). This comprises a growing body of CVI knowledge created for teaching, sharing, learning and developing knowledge and understanding. By analysing anonymised data concerning the activity of 80,000 users from 170 countries, we have examined where the users who are accessing the website come from, what users are seeking in terms of information, how they have accessed the website, and what devices they use. The results are interpreted though frequency analysis and linear regression. Based on this analysis several recommendations are made in terms of disseminating information about CVI to members of the public as well as developments to enhance the website itself. To our knowledge this is the first study to examine the use of a website dedicated to CVI using Google analytics.

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Power is knowledge: empowering parents of children with cerebral visual impairment

Cited by 19 publications

References 29 publications

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

Cerebral Visual Impairment on the Web: An Exploration of an Educational Web Resource as a Bridge to Public Understanding

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