Journal of Visual Impairment & Blindness

The purpose of this study was to gain information from parents in the United States about their children with albinism. The article focuses on information and services related to medical care and low vision care.

An online questionnaire was used to collect data, and parents had opportunities to submit additional information. One hundred ninety-two families, representing 223 children with albinism from 40 U.S. states, completed surveys.

A snapshot of the data indicates that for 8.6 out of 10 families, there were no known relatives with the condition; 55.8% of the children had visual acuities that met the criteria for legal blindness in the United States; and 48% of the children using optical devices had received clinical low vision evaluations by optometrists or ophthalmologists who specialized in low vision.

The data gathered suggest recommendations for medical service providers, including clinical low vision specialists who perform evaluations for improving the functional use of vision.

The purpose of this study was to gain information from parents in the United States about their children with albinism. The first article (in this issue) focused on the data from this study that addressed medical and low vision care. This article focuses on information and services related to the education of children with albinism.

An online questionnaire was used to collect data for this study from parents of children with albinism. Representing 223 children with albinism from 40 states in the U.S., 192 parents completed surveys and had opportunities to submit additional information.

A snapshot of the data indicates that, as a whole, parents perceive their children to do well academically, but they experience social and emotional challenges; 98 children were receiving direct instruction from a teacher of students with visual impairments and 84 were receiving consultation services. Although parents were generally satisfied with their level of involvement in the development of their children's education plans, many could not provide key information about the assessments their children had received, their children's reading rates, or the services with which their children were being provided.

These data illuminate the fact that, despite the premise of the Individuals with Disabilities Education Act (IDEA, 2004) that parents be equal partners in the education of their children with special needs, these parents of children with albinism were not as informed about the assessments and services that their children were receiving as might be expected. Findings also suggest the possibility that students with albinism may not be receiving appropriate educational services to address the limitations imposed by their low vision. In particular, it appears that these students, most of whom will be non-drivers, are not receiving orientation and mobility services. In addition, there was evidence that over half of these children may not be receiving instruction in the use of low vision devices.

The data gathered in this study provide directions for educators who work with children who have albinism and their families, as well as for those who design and administer services for children with visual impairments. Based on these reports from parents, it appears that children with albinism are not being assessed in the areas key to understanding their functioning and, although as a group they are doing well academically, other needs related to the Expanded Core Curriculum (ECC) are not being addressed as frequently. Teachers of students with visual impairments may want to be more explicit when describing to parents the assessments on which their educational recommendations are being made. Further research is needed to determine if children with low vision are being provided with educational services based on educational assessments and needs or if other administrative factors are driving these services.

It is important to understand albinism, since it is a disorder associated with visual impairment, predisposition to malignant melanomas, and social stigma. The main objective of this article is to review the genetics and biologic mechanisms of the non-syndromic albinism subtypes and to describe associated clinical manifestations. We also discuss research on its treatments.

A review of the published literature on albinism subtypes was performed, spanning basic laboratory research, published case reports, and experiences of people with albinism.

Clear progress has been made in comprehending the causes of albinism; research has shed light on the complexity of the disorder and has led to the molecular classification of subtypes.

Despite the increase in knowledge with regards to albinism, gaps still exist. It is important to continue the pursuit of unraveling the mechanism of the disorder and to monitor the frequency of the subtypes worldwide in order to aid in the development of treatments. Furthermore, disseminating knowledge of albinism is crucial for future progress.

Albinism is a disorder characterized by hypopigmentation of the hair, skin, and eyes, with accompanying ocular abnormalities that remain relatively stable throughout life. The disorder is defined by a spectrum of pigmentation where albinism is more evident among individuals of dark complexion than their lighter-pigmented peers. Patients with albinism require protection against sun exposure and special resources to address visual impairments. When albinism patients are diagnosed and properly accommodated, they generally report a positive quality of life.

This article explored the experiences of eight persons with albinism in Puerto Rico in their quest for educational, social, and employment opportunities.

Volunteers participated in structured interviews that yielded the information presented in this article.

Four main areas were identified that best described the stories of these participants: knowledge of and attitudes toward albinism, resilience and other supports, the challenges of albinism, and current needs.

It is clear from the participants' stories that physical attributes are still a prime factor in determining a variety of interactions for persons with albinism, many with potential effects on quality of life.

This article contributes to the literature documenting psychosocial aspects of the albinism condition. It provides evidence that environmental barriers and attitudes generally affect interactions with persons with albinism, knowledge that can be used by professionals who work with individuals with albinism.

Rehabilitation can improve visual outcomes for adults with acquired homonymous visual field loss. It is unclear, however, whether rehabilitation improves visual outcomes for children because previous training schedules have been tiresome, uninteresting, and have failed to keep them engaged. In this study, we assessed whether children and young people with homonymous visual field loss would adhere to six weeks of unsupervised compensatory training using a specialized video game.

Participants aged between 7 and 25 years with homonymous visual field loss completed tabletop assessments of visual search across four site visits. Two baseline assessments separated by four weeks evaluated spontaneous improvements before training began. Participants were then given a copy of the video game to use unsupervised at home for six weeks. Two follow-up assessments separated by four weeks were then conducted to evaluate immediate and acutely maintained effects of training.

Fifteen candidates met the inclusion-exclusion criteria, nine participated, and eight completed the study. Participants completed an average of 5.6 hours of unsupervised training over the six weeks. Improvements on in-game metrics plateaued during week three of training. The time taken to find objects during tabletop activities improved by an average of 24%–95% CI (2%, 46%)—after training.

The findings demonstrate that children and young people with homonymous visual field loss will engage with gamified compensatory training, and it can improve visual outcomes with less of a time commitment than has been required of adults participating in non-gamified training in previous studies. Appropriately powered, randomized controlled trials are required to evaluate the validity and generalizability of observed training effects.

Rehabilitation specialists can use specialist video games and gamification technique to engage children and young people with homonymous visual field loss in long-term unsupervised training schedules.

This study presents and evaluates the use of a method using local cues to indicate perspective in tactile diagrams as compared to the current use of visual perspective methods.

Perspective for an object using local cues is represented with standard visual perspective lines but with the thickness of the lines varying as a function of depth away from the viewer. Performance of visually impaired study participants (that is, those who are blind or have low vision), using the new method and the standard visual perspective method, were compared as functions of: onset of vision loss of a participant, perspective method used, repetition, and object and perspective of an object presented.

For the main task, the method used—Wald χ²(1, 585) = 7.147, p = 0.008—and the method-repetition interaction—Wald χ²(1, 585) = 4.272, p = 0.039—had significant effects. Participants performed better with our new method and there was a significant improvement for (only) this method between repetitions.

The findings demonstrate that our new method improved the performance of users for tasks involving perspective on diagrams over the standard visual perspective method. The data also indicates that with more repetition, improvement could become even greater than observed during this study.

Perspective frequently plays a critical role in aiding the understanding of questions in mathematics and science. Adding local cues to a standard perspective diagram shows promise in improving users' ability to interpret objects.

Technological advances have introduced three-dimensional (3-D) printing as an option for creating tactile maps for people with visual impairments (that is, those who are blind or have low vision), diversifying the types of map products that are available. At the same time, it presents a challenge to map makers to implement designs across multiple production methods. We evaluated map symbols to determine their discriminability across three different materials: microcapsule paper, 3-D printer plastic, and embossed paper.

In a single session lasting less than 90 minutes, participants completed a matching task and provided informal feedback regarding their preferences. We measured speed and accuracy to establish discriminability of map symbols on each of the materials. Eighteen participants were recruited from a referred sample among attendees at the American Council of the Blind annual convention in 2013.

Response times were significantly different across the three materials (p < 0.001). Without sacrificing accuracy, response times were faster for the 3-D printed graphics than for either the microcapsule paper (p < 0.001) or the embossed paper (p < 0.001). User preference was divided across the three materials. Some people disliked the “sharp” corners of the 3-D printed symbols, while others preferred their “crisp” edges.

Our results demonstrate faster discriminability of a set of tactile symbols produced on a 3-D printer compared to those same symbols printed on microcapsule paper, the material for which the symbols were originally designed. Participant feedback reflected preferences both in favor of and against reading symbols produced on the 3-D printer.

This article discusses the functional equivalence of tactile symbols produced across multiple production technologies. It addresses two considerations when using 3-D printing to make tactile maps: preparing digital files for printing and the printing work flow. Digital files ready for printing on each of the three materials are available for download (Brittell, Lobben, & Lawrence 2016).