Adolescence is a life stage with rapid and major developmental changes, yet little is known about how these changes influence the quality of life (QoL) of young people who are deaf or hard-of-hearing. The QoL concept is important to understanding children and youth with hearing loss because of the importance of communication and social participation in everyday life. Measuring how youth who are deaf or hard-of-hearing (DHH) feel about their QoL can provide children, parents, and clinicians with important information that can help guide individual and social choices to optimize subjective well-being.
Quality of Life Domains
The Project Hearing Quality of Life (HQL) study team, a collaborative research effort among researchers at several institutions in Seattle, Wash., and Boulder, Colo., recently developed a QoL questionnaire for children and youth with hearing loss. Our approach began with asking youth who are deaf or hard-of-hearing how they feel about their lives. Our questionnaire development begins with understanding how adolescents evaluate their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns (World Health Organization Quality of Life Group, 1994). With this in mind, we interviewed 49 youth aged 11–18 who had hearing loss about the feelings or experiences that were important to their quality of life. Three domains were identified from analysis of qualitative interview transcripts as important: self-advocacy/acceptance, perceived stigma, and participation.
These three domains represent areas that youth perceive as influencing their QoL specific to hearing loss and were used in the validation step of the Youth Quality of Life-Deaf and Hard-of-Hearing (YQOL-DHH) questionnaire in a group of 230 youth with mild to profound hearing loss. The YQOL-DHH questionnaire captures information known only to the individual (i.e., not observable by anyone else) and assesses how the youth feels about his or her life at the moment answering the questions. Each question captures the general context of being deaf or hard-of-hearing (e.g., "As a person who is deaf or hard-of-hearing" or "Because I am deaf or hard-of-hearing")and the main stem of the sentence provides a specific feeling, expectation, or concern (e.g., "I feel accepted by students at my school"). A number scale offers answer options from 0 ("not at all") to 10 ("very much").
To examine whether the newly developed YQOL-DHH questions are valid and actually measure DHH-specific quality of life in youth, the researchers recruited youth who are deaf and hard-of-hearing for the validation study, asked them to complete the survey, and analyzed the YQOL-DHH questions using statistical methods described in Patrick et al. (2010).
Youth were recruited from mainstream schools and schools for the deaf in Washington, Colorado, New Mexico, and Arizona, as well as from audiology clinics, summer camps, advocacy groups, and national associations for the deaf or hard-of-hearing. Overall, 230 youth with mild to profound hearing loss were recruited and completed the newly developed YQOL-DHH questionnaire in addition to other questions. Of the 230 adolescents completing the questionnaire, 57% were between 11 and 14 years of age and 43% were between 15 and 18 years of age, with equal numbers of males and females. Participants were predominantly white; 84% had parents with normal hearing. More youth from mainstream schools without programs for students who are DHH (44%) participated in the survey than youth from mainstream schools with DHH programs (25%), day and residential schools for the deaf (27%), and home schooling (4%).
The researchers compared how youth who are DHH of different ages, hearing levels, and gender view their quality of life. Using pair-wise t-tests to detect significant differences of mean YQOL-DHH scores, we found that overall the YQOL-DHH participation domain scores were significantly higher (better) for the 11–14 age group than for the 15–18 age group (see Figure 1 [PDF]). Generally, there was no consistent relationship between the level of hearing loss and scores for the three YQOL-DHH domains.
Only one comparison by hearing level was significant—the self-acceptance/advocacy YQOL-DHH score was significantly higher for youth with cochlear implants (CI) than for youth who had severe or profound hearing loss who did not have a CI (see Figure 2 [PDF]). Youth consistently reported lower YQOL-DHH scores in perceived stigma in comparison to scores reported for the other two YQOL-DHH domains. This finding suggests that a higher level of YQOL-DHH stigma is a problem for youth with hearing loss, which may be an important focus for future research.
The study sample included diverse youth who are deaf or hard-of-hearing and the overall similarities in DHH-specific scores suggest that 11- to 18-year-olds generally share similar views and perceptions about their quality of life, regardless of the school they attend, whether their parents are deaf or hearing, or if they are male or female. The only exceptions were 11- to 14-year-olds reporting a higher quality of life for the participation domain and youth with a CI who reported higher quality of life for the self-acceptance/advocacy domain. Understanding quality-of-life issues for youth who are deaf or hard of hearing is important for parents, educators, and clinicians to provide support and assist youth in making informed life decisions.
The study team also looked at the influence of parent-youth communication in an additional analysis of the data. Successful exchange of ideas and information between parents and their children is critical for overall development in youth who are DHH (see Spencer & Marschark, 2010). The researchers hypothesized that adolescents' understanding of what their parents say may be an important indicator of participation in everyday life. The study results showed that adolescents who understood most or all of what their parents said reported higher YQOL-DHH related to self-acceptance and advocacy and also lower perceived stigma related to being DHH. Understanding all of what their parents say was associated with adolescent report of higher self-advocacy/acceptance and participation YQOL-DHH scores. These perceptions were consistent regardless of the severity of hearing loss or use of CIs. In addition, youths' perceptions of their generic and DHH-specific quality of life do not seem to differ by mode of communication, whether they used sign language, spoken language, or speech and sign (Kushalnagar et al., manuscript in preparation).
The researchers also were interested in examining how school type may be associated with DHH-specific QoL. We compared youth in three different kinds of schools or programs: 1) mainstream public schools with DHH programs; 2) mainstream public schools without DHH programs; and 3) DHH-specific schools. Overall, we found that school type has no overall affect on the participants' DHH-specific QoL.
We also looked at the parent hearing status of deaf youth to understand whether those with hearing parents were different from those with deaf parents. Among youth who were deaf and who attended mainstream schools with no DHH program, there seem to be no significant differences in any YQOL-DHH domain scores between those who have parents who are hearing and those whose parents are deaf. However, differences emerged for youth in mainstream schools with DHH programs. In mainstream schools with DHH programs, youth who are deaf and had parents who are deaf had higher participation scores. In contrast, youth who are deaf with parents who are hearing reported lower YQOL-DHH scores for perceived stigma than youth who are deaf with parents who are deaf. For this group, there were no differences on self-acceptance/advocacy scores between youth who are deaf and had parents who are deaf and those who had parents who are hearing.
Directly assessing how youth who are DHH perceive their communication with others is important for understanding their needs and can be a tool to evaluate medical intervention as well as programs in the school or community. We are working on a parent report of behaviors and events for children 5–10 years old who are DHH. For more information about this newly developed measure or the HQL study results visit the University of Washington's website.