Reports from Parents about Medical and Low Vision Services for Their Children with Albinism: An Analysis

Abstract

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

Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review

“…On the African continent, people with albinism (PWA) are the target of violent discrimination associated with multiple beliefs and superstitions [19][20][21][22]. Nevertheless, several studies have also looked at young PWA's life experiences in terms of education [23][24][25][26][27], social functioning [28,29], and self-concept [30]. Moreover, the last decade has seen a significant amount of research emerge in health psychology regarding adults with albinism.…”

An Analysis of Parents' Reports on Educational Services for Their Children with Albinism

“…The first part of the study was developed to gather demographics of the families and of the children for whom parents provided information. Other sections of the questionnaire had to do with medical information and services, including clinical low vision evaluations (Corn & Lusk, 2018), education information and services, and parent perspectives on their children's educational services.…”

“…This number seems lower than expected, given the need for addressing the use of distance vision and the effects of photophobia with these children. As noted in the companion article by Corn and Lusk (2018), only 48% of the children using optical devices had received input from a clinical low vision evaluation. It is clear, then, that not all children have had low vision evaluations, which has potential implications.…”

“…In the first article that described findings related to this study (Corn & Lusk, 2018), parents were asked to indicate if their children had disabilities in addition to those resulting from albinism; 9.1% indicated that their children had behavioral or emotional disabilities. As noted in these results, parents reported that 33.2% of their children were functioning socially below same-age peers.…”

“…This article is the second of a nationwide study of the medical, low vision, and educational services that are provided to children with albinism. The authors' first article in this issue (Corn & Lusk, 2018) addressed the children's medical and low vision services; this article focuses on the information related to the education services the children were receiving at the time of the survey and their parents' understanding of them. The Individuals with Disabilities Education Act (IDEA, 2004) has provisions for payments for medical evaluations that are sought to improve functioning within special education, assistive technology assessments, the provision of devices, and instruction in the use of those devices.…”