A Community-Based Participatory Research Project Involving Latino Families of Deaf and Hard-of-hearing Children

The community-based participatory research project described in this paper was designed to help Spanish-speaking families of deaf and hard-of-hearing children gain access to necessary health, education, and local resource information. The project was motivated by the need to improve communication between medical and education resource centers with Spanish-speaking families. This paper reports on the specific methods and implementation of the partnership approach, the development of the project, and lessons learned for future projects of this type. 1 Flores: Latino hard-of-hearing children Published by Nighthawks Open Institutional Repository, 2020 Vol. 12, No. 2—JOURNAL OF COMMUNITY ENGAGEMENT AND SCHOLARSHIP—Page 65 and also families not enrolled in any program. Our goal was to provide accessible information and answer questions about deaf issues in general. By contrast to their hard-of-hearing peers who receive hearing aids before age 1, most Latino DHH children in Utah were fitted with hearing aids after the age of two. The delay in receiving any audio signal (including speech sounds) leads to a delay in the language development of both Spanish and English. This has resulted in Latino DHH children attending the USDB’s Listening and Spoken Language program two to four years longer than their non-Latino peers. Latino DHH children who leave Listening and Spoken Language also tend to move to full-time special education programs in their neighborhood schools rather than transitioning directly into traditional classrooms (Salazar, 2016). Based on research from the fields of linguistics, speech science, and education (Bennet, 1988; Cohen et al., 1990; Cummins, 1992, García-Vázquez, Vázquez, López, & Ward, 1997; Collier & Thomas, 2004; Genesee, 2007; Ertmer, True Kloiber, Jung, Connell, Kirleis, & Bradford, 2012), the earlier the child is enrolled in early intervention, the greater their academic success rate. Similarly, if spoken language is the goal, speech production accuracy is correlated to the amount of time the child can access audio signal using a hearing device. In Utah, there has been a need to improve communication with Latino families to encourage earlier medical action and/or earlier enrollment in any USDB program. This project is a collaborative effort by the author (principal investigator) and the community partner, the USDB’s Listening and Spoken Language program director, to address this need. Initially, we assumed delayed intervention was motivated primarily by financial difficulties; however, through conversations with the USDB staff and parents of the children, it became clear that the greater obstacle, at least locally, was the general lack of accessible information. Challenges include few qualified interpreters/Spanish speakers at every stage of the medical process, limited materials on the medical and non-medical options that are presented in Spanish or accessible English, and a general misunderstanding and/or dismissal of cultural differences surrounding deafness. Improvements are needed in terms of medical and educational information that is available to families in Spanish. Currently, local Latino families receive limited, if any, written information in Spanish at the time of deaf diagnosis; there is one pamphlet regarding cochlear implants and a few handouts about medical services. These materials are provided in local medical (ear/nose/throat, otolaryngology) offices but are produced for national audiences and tend to use specialized medical language. Most of the written materials they receive, including hearing aid catalogs, are produced only in English. Additionally, none of our local ear/nose/ throat offices have Spanish speaking medical staff. NonEnglish speaking families generally bring a bilingual family member, often an older child, to help interpret. While these children or family members may speak more English than the parents, they do not necessarily know any medical terminology or understand the scope of the medical issue. Older children interpreters (as young as 8 in this sample) may also lack the maturity to handle the situation. Once families are connected to the USDB, which is optional, they do receive more help, though not necessarily in Spanish. The USDB does not produce any official Spanish language written materials; however, they do have a few Spanish-speaking employees who help serve the Latino families in their programs from infancy— the Parent Infant Program—through elementary school through the Listening and Spoken Language program. There are three Latino employees in this program who are native speakers of Spanish and several employees who understand and/or speak Spanish, including a pediatric audiologist. Although the ASL program serves DHH children longer (into adulthood) than the Listening and Spoken Language program (usually into second grade), the ASL program operates in ASL and English only. For Spanish-speaking families, the Listening and Spoken Language program is more accessible, but does depend on children having hearing assistive devices. Creating accessible materials is critically important in helping Latino families make informed decisions for their DHH children in a timely fashion. Beyond the language barrier (and even for bilingual families where language is not the major barrier), there are also cultural differences regarding the perceived “permanence” of deafness and treating deafness in infants that are not being addressed. When asked directly, many of the parents in our program did not understand that a newborn deafness diagnosis required intervention.