Abstract
Purpose :
Children with vision impairment and their families may find themselves isolated from their peers as they navigate typical developmental challenges in addition to a physical handicap. To assess the perceived need for a social work component in the multidisciplinary care model for pediatric low vision rehabilitation, children and their guardians evaluated in low vision clinics at Cincinnati Children’s Hospital Medical Center (CCHMC) and West Virginia University Ruby Memorial Hospital (WVU) were surveyed.
Methods :
Survey respondents included 107 guardians and 87 children seen previously for low vision rehabilitation at CCHMC or WVU. Surveys were completed after low vision diagnosis and during or after participation in multidisciplinary vision rehabilitation clinics. Respondents were asked about the desire for additional services or benefits at the time of diagnosis and after including: support and peer groups, summer camps, after school programs, specialized training, and other services. Participants were also asked about emotional response to the diagnosis. Survey data were examined to determine thematic trends in child and guardian responses.
Results :
At the time of diagnosis, 93% (100/107) of guardians and 71% (62/87) of children would have preferred referral to at least one service or benefit. At the present time, 82% (88/107) of guardians and 70% (61/87) of children report a desire for additional services. Guardians report feeling “sad” and “overwhelmed” about their child’s diagnosis [(41% (44/107) and 53% (57/107) respectively]. Comparatively, 34% (30/87) of children reported feeling “sad” and 31% (27/87) feel “overwhelmed”. Only 54% (58/107) of guardians and 39% (34/87) of children report having the knowledge or support to navigate their feelings. Additionally, 54% (58/107) of guardians and 44% (38/87) of children report they would have seen a counselor at the diagnosis visit had one been provided as standard care.
Conclusions :
Children with vision impairment and their guardians have mental health concerns and would likely benefit from having access to additional services and programs. We are recommending inclusion of a social worker or other service provider as a standard care component to multidisciplinary vision rehabilitation services after the diagnosis of a visually impairing condition for families to address the mental health needs identified by this survey.
This is a 2021 ARVO Annual Meeting abstract.