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

ABSTRACT: 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.

SUBMITTER: Goodenough T

PROVIDER: S-EPMC8295497 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background: The pupillary light reflex is weaker for stimuli presented inside as compared to outside absolute scotomas. Pupillograph perimetry could thus be an objective measure of impaired visual processing. However, the diagnostic accuracy in detecting scotomas has remained unclear. We quantitatively investigated the accuracy of a novel form of pupil perimetry. Methods: The new perimetry method, termed gaze-contingent flicker pupil perimetry, consists of the repetitive on, and off flickering of a bright disk (2 hz; 320 cd/m2; 4° diameter) on a gray background (160 cd/m2) for 4 seconds per stimulus location. The disk evokes continuous pupil oscillations at the same rate as its flicker frequency, and the oscillatory power of the pupil reflects visual sensitivity. We monocularly presented the disk at a total of 80 locations in the central visual field (max. 15°). The location of the flickering disk moved along with gaze to reduce confounds of eye movements (gaze-contingent paradigm). The test lasted ~5 min per eye and was performed on 7 patients with cerebral visual impairment (CVI), 8 patients with primary open angle glaucoma (age >45), and 14 healthy, age/gender-matched controls. Results: For all patients, pupil oscillation power (FFT based response amplitude to flicker) was significantly weaker when the flickering disk was presented in the impaired as compared to the intact visual field (CVI: 12%, AUC = 0.73; glaucoma: 9%, AUC = 0.63). Differences in power values between impaired and intact visual fields of patients were larger than differences in power values at corresponding locations in the visual fields of the healthy control group (CVI: AUC = 0.95; glaucoma: AUC = 0.87). Pupil sensitivity maps highlighted large field scotomas and indicated the type of visual field defect (VFD) as initially diagnosed with standard automated perimetry (SAP) fairly accurately in CVI patients but less accurately in glaucoma patients. Conclusions: We provide the first quantitative and objective evidence of flicker pupil perimetry's potential in detecting CVI-and glaucoma-induced VFDs. Gaze-contingent flicker pupil perimetry is a useful form of objective perimetry and results suggest it can be used to assess large VFDs with young CVI patients whom are unable to perform SAP.

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

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