School Placement and Perceived Quality of Life in Youth Who Are Deaf or Hard of Hearing

Abstract

In the education of students who are deaf and hard of hearing (DHH), there is much debate about how placement affects educational outcomes and quality of life. This study examined the relationship between quality of life and educational placement that include and do not include other DHH youth. Participants included 221 DHH youth, ages 11–18 with bilateral hearing loss. Results showed that there were few differences in quality of life related to school placement (with age, gender, depression symptoms, and hearing level as covariates). For both participation and perceived stigma, there was an interaction between school placement and parent hearing status, with no single school placement showing the best results. DHH youth with hearing parents in schools specifically for DHH students scored lower than DHH with deaf parents in some domains (Participation and Perceived Stigma). When the DHH youth were compared with the general population, those in schools that included DHH students scored lower in some aspects of quality of life, particularly Self and Relationships. This study demonstrates that DHH students may not differ much in terms of quality of life across schools placements, but that there may be differences in subsets of DHH youth.

Childhood hearing loss can put children and youth at risk for delays in speech, language, cognitive, and social development (see Spencer & Marschark, 2010). Because the majority of deaf and hard-of-hearing (DHH) children are born into predominately hearing families, estimated at about 96%, these children and youth may have challenges communicating with family members and friends. Communication challenges may affect a child or youth’s perceived quality of life and/or their physical, emotional, and psychological functioning (Leigh, 1999, 2009; Stinson & Liu, 1999). Issues related to quality of life may be moderated or mediated by educational placements that include (or don’t include) other DHH youth. In this study, we explore quality of life for DHH youth when placed in various educational settings.

Quite often, research on outcomes in DHH children and youth focuses on physical or behavioral measures of hearing and do not tap into the subjective aspects of the impact of speech, hearing, language, and academic skills on quality of life. Previous studies also often do not include measures of communication, social interaction, and participation that may be important for well-being and good, perceived health-related quality of life (HRQL; see Lin & Niparko, 2006). In a meta-analysis of HRQL research following pediatric cochlear implantation, Lin and Niparko (2006) noted that “instruments that measure progress from the child and family perspective are needed” (p.1703) and that the lack of well-validated HRQL instruments results in interpretations and conclusions that involve personal judgment on the part of the researcher about what aspects are relevant to HRQL in DHH children and youth.

In healthy populations, it is more common to evaluate overall and not HRQL. At an individual level, overall quality of life is a multidimensional construct that is not specific to a clinical population. There is generic quality of life that focuses on the subjective experiences of any and all individuals. The World Health Organization states “quality of life is defined as individuals’ perceptions of 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 Assessment Instrument Group, 1994, p. 1403). Quality of life questions often focus on the self, social relationships and a person’s relationship with his or her environment, for example, “I feel good about myself” (self), “People my age treat me with respect” (social), or “I feel safe when I am at school” (environment). There is also condition-specific quality of life that attempts to capture concepts and domains of quality of life that are specific to a group. In the case of DHH children, not just their ability to hear but also broader quality of life issues, such as the ability to successfully interact with peers and family (regardless of hearing ability) and to maintain psychosocial, emotional, and academic development (Gilman, Easterbrooks, & Frey, 2004; Lin & Niparko, 2006; Hintermair, 2011; Kushalnagar, et al., 2011). An example of DHH-specific quality of life items are “As a person who is Deaf or hard-of-hearing, I feel accepted by students at my school,” or “As a person who is Deaf or hard-of-hearing, I am satisfied with the ways I have to communicate.”

When past research has investigated quality of life for DHH children and youth, often only generic instruments were used, which may not capture issues that are unique to a DHH child or youth. Or when instruments developed specifically for DHH children and youth were used, they often lacked establishment of validity or reliability or equated functional outcomes such as better hearing ability with better quality of life (see Kushalnagar, et al., 2011; Lin & Niparko, 2006). Additionally, proxy reports by other persons, such as parents or teachers, have been used frequently with DHH children and youth due to language challenges inherent with self-report. The current study reports data on DHH youth using both a DHH-specific quality of life instrument developed for DHH youth and a generic quality of life instrument developed for youth with and without disabilities and chronic conditions.

In the education of students who are DHH, there is much debate about how placement affects both educational outcomes and quality of life (Antia, Sabers, & Stinson, 2007; Antia & Stinson, 1999; Gilman, Easterbrooks, & Frey, 2004; Leigh, 2009; Hintermair, 2011; Stinson & Antia, 1999). Placement options generally can be categorized into three broad types of school placement: (a) the DHH student is in a regular public school, typically with limited DHH peers (often referred to as mainstreamed); (b) the DHH student is in a center-based program where there are other DHH students from the surrounding area, allowing DDH peer interaction (also referred to as partial mainstream); (c) the DHH student is in a school exclusively for DHH students, which includes day/residential schools and those promoting only spoken English or the use of sign language in some way (see Spencer & Marschark, 2010). Historically, DHH students were mostly placed in schools exclusively for DHH students, but during the past decades placement has shifted considerably. According to the 28th Annual Report to Congress on the Implementation of Individuals with Disabilities Education Act, or IDEA (U.S. Department of Education, Office of Special Education and Rehabilitative Services, Office of Special Education Programs, 2009, v.2, p. 187), DHH children ages 6 through 21 in the United States attended schools with a variety of environments, with 85% in public school settings where the children were either fully or partially mainstreamed.

School placement can be a contentious issue among many DHH adults and professionals who emphasize social development. One of the key discussion points related to educational placement is related to quality of life outcomes. Individuals who argue for placements with other DHH students often highlight issues of accessibility to peer interactions and opportunities for friendship and social interaction (Cerney, 2007; Foster, 1988; Leigh, 1999, 2009; Oliva, 2004; Ramsey, 1997). Alternatively, research has shown that a DHH student in an inclusive setting who has limited interaction with hearing peers is more likely to experience social isolation (Leigh, 1999, 2009; Stinson, Liu, Saur, & Long, 1996). Leigh (1999) argues that interaction with DHH peers and adults is essential for the formation of an identity that includes a healthy perspective about oneself as a DHH person.

Research on quality of life outcomes and school placement is limited, despite the concerns that many have raised about DHH students’ opportunities for social interaction and personal growth. In addition, there have been dramatic differences in speech, language, and hearing outcomes in more recent generations of DHH students, with the current generation of DHH students having benefited from earlier identification, earlier language development, and advanced audiological devices and services, as well as significant shifts in educational policy (Spencer & Marschark, 2010) limiting the relevance of studies conducted decades ago on current DHH students.

There are several studies that look at quality of life issues within a single type of school placement (Fellinger, Holzinger, Sattel, Laucht, & Goldberg, 2009; Foster, 1988; Hintermair, 2011; Leigh, 1999; Stinson, Whitmire, & Kluwin, 1996). For example, Hintermair (2011) examined quality of life in a large group of mostly elementary-age German students who were in regular classrooms (n = 212), using the Inventory of Life Quality of Children and Youth (ILC), a screening instrument developed for hearing students that consists of seven items on seven domains (school, family, social contact with peers, interests and leisure activities, physical and mental health, as well as an overall quality of life question). Results show that the DHH children had a significantly higher quality of life than the hearing students (moderate effect size = .42), and they were more satisfied with school (moderate effect size = .59). When asked about satisfaction with family relationships or social contact with peers, there were no differences between DHH and hearing groups. Hintermair also assessed the student’s perception of the quality of participation with teachers and peers and found significantly high correlations between satisfaction with school, social contact with peers, mental health, and overall quality of life. Hintermair concludes that HRQL is highly related to good communication and social experiences at the regular school.

One study (Gilman, Easterbrooks, & Frey, 2004), conducted in the United States from three schools, examined multidimensional life satisfaction in DHH youth (ages 8–18, mean = 13.04) in center-based schools (n = 23) versus those in residential schools for the deaf (n = 65), with a control group of hearing youth (n = 71). It used the Multidimensional Students’ Life Satisfaction Scale (MSLS), which is a generic instrument developed for hearing students. The MSLS is a self-report with 47 items across five life domains (Family, Friend, School, Living environment, Self) and a global domain. The results show that hearing youth generally show higher (or better) life satisfaction than the DHH group, collapsed across school placement. Both the day and the residential students who are DHH scored lower on satisfaction with friends than the hearing group, and there were no differences between day and residential students. In fact, the Friend domain accounted for 25% of the variance in life satisfaction in the DHH groups. The difference in scores on Friend satisfaction was the largest between the DHH and the hearing groups, indicating “fundamental differences existed in the quality of peer relations and social support” (p. 156). The pattern of association among the MSLS domains was more similar between the DHH day and the hearing students, with DHH residential students demonstrating different patterns. It is interesting to note that both DHH groups were in settings that allow considerable access to DHH peers.

The current study investigated HRQL for DHH students using a generic instrument that has been validated for typically developing students (Patrick, Edwards, & Topolski, 2002). In addition, results were also obtained for a DHH-specific Quality of Life instrument developed specifically for students who are DHH (Patrick, et al., 2011). It compares DHH students across school placement and includes students with a range of hearing loss. We were interested in testing the hypotheses that (a) school placement affects the DHH-specific quality of life of youth; (b) DHH children with hearing parents may differ from those with DHH parents; and (c) quality of life for DHH youth will be different than the general population of youth. The specific goal of the study was to explore the association among school placement and the three YQOL-DHH domains (Participation, Self-Acceptance & Advocacy, Perceived Stigma), as well as to examine the factors associated with school placement.

Methods

Participants

Human subject certification for the study was provided from the University of Washington and the University of Colorado. Youth were recruited via flyers, email listserv, postings, mailings and word of mouth at sites such as center-based programs and DHH schools in Washington, Arizona, Colorado, and New Mexico, Otolaryngology and Audiology clinics, DHH-specific summer camps, and local and national DHH organizations and Audiological professional organizations. Interested participants contacted study personnel using web, email, instant messaging or toll-free telephone, or videophone. Eligibility screening for interested youth was conducted with parents. Youth ages 11–18 with bilateral hearing loss, no serious physical or mental conditions, and ability to read at or above a fourth-grade reading level (assessed with the American Guidance Service 8-item reading-level indicator; Williams, 2000) were eligible for the study. At the time of recruitment, hearing level was determined by parent report on screening interview but later verified by obtaining the youth’s most recent audiogram from the youth’s audiologist, which was interpreted by a certified audiologist who was a member of the team. A stratified recruitment approach was conducted based on school type (school with no DHH program, school with DHH program, and schools for DHH) and hearing level (mild, moderate/moderate–severe, severe/profound, cochlear implant). Youth who scored 3/8 or lower on the reading indicator and who also lived within proximity to the WA or TX research sites were given the option of an interviewer–administered DVD. Additional information regarding the procedures can be found in the paper that describes the validation of the DHH-specific quality of life instrument (Patrick, et al., 2011).

Measures

The questionnaire administered to the youth combined several instruments, developed and validated on hearing youth with and without chronic conditions and disabilities, as well as a newly developed HQOL instrument designed for DHH youth:

• Youth Quality of Life Instrument–Research Version (YQOL-R; Edwards, Huebner, Connell, & Patrick, 2002; Patrick, Edwards, & Topolski, 2002), which assesses four domains: Sense of Self, Social Relationships, Culture and Community, and General Quality of Life. A readability analysis confirmed that it is readable at the fourth-grade level and is designed for ages 11–18. The YQOL-R contains 41 subjective items that can be reported only by the youth themselves. Psychometric analyses on the YQOL-R perceptual scales have yielded scores with acceptable internal consistency (Cronbach’s alpha = 0.77–0.96), test–retest reliability (ICCs = 0.74–0.85), expected associations with other measured concepts, and ability to distinguish among known groups.

• Youth Quality of Life–Deaf and Hard of Hearing (YQOL-DHH; Patrick, et al., 2011), which is a newly developed quality of life instrument developed specifically for youth who are deaf and hard of hearing, validated in DHH youth 11–19 years of age. The development of the YQOL-DHH began with semistructured concept elicitation interviews with DHH youth and adults and parents of DHH children and youth. These interviews were used to develop items for the YQOL-DHH. The instrument assesses youth quality of life as a DHH person in three domains: Participation, Self Acceptance and Advocacy, and Perceived Stigma. Psychometric analyses of the YQOL-DHH scales have yielded scores with acceptable internal consistency (Cronbach’s alpha = .84–.87) and test–retest reliability (ICCs = 0.79–0.88). It consists of 32 items and can be administered in one of four versions: (a) paper and pencil in a professionally produced booklet; (b) web-based administration where youth could click on their responses; (c) DVD in ASL; or (d) DVD in PSE, with fluent teenage deaf signing models.

• The Children’s Depression Inventory (CDI; Kovacs, 1992), which is a 10-item short version designed for self-report with youth, was included as a covariate, given that depressed affect has a strong correlation with quality of life (Patrick, Edwards & Topolski, 2002). The CDI-S correlates 0.89 with the longer 27-item CDI and has been shown to be a valid screening tool for children and adolescents (Timbermont, Braet, & Dreessen, 2004). An updated CDI-2nd edition (CDI-2) has become available since the initiation of the current study (Kovacs, 2010).

• Questions that surveyed the youth about their communication and participation at home and school were included. Sixteen questions were included and adapted for self-administration from the Colorado Individual Performance Profile (CIPP; Colorado Department of Education, 2002). Survey items asked about communication how well the student and parents understood each other, how often the student participated in extracurricular activities, and the type of amplification used.

• Additional demographic variables age, sex, race, and parent’s education were measured using standard items from National Longitudinal Study of Adolescent Health (National Institute of Child Health and Human Development, 2011) and the Youth Risk Behavior Survey (Centers for Disease Control and Prevention, 2011).

Procedure

Oral parent consent was obtained via telephone/videophone screening and youth assent and Health Insurance Portability and Accountability Act of 1996 (HIPAA), and medical release forms for audiological information were mailed to each participant. The majority of the youth had study material mailed to them at baseline survey and were instructed to complete them individually on their own time at home or school without parent or other assistance. Paper-and-pencil, web-based, or digital movies (DVD) of American Sign Language (ASL) or English-like signing (PSE) self-administered surveys were provided to youth passing the reading indicator, according to their preference. The survey questionnaire formats varied in administration length from 15min for the paper-and-pencil survey to 30min for DVD survey. Several group administrations were conducted at schools as well with a study researcher (6% of the sample) and interpreters when needed. Youth were instructed to complete the survey in one sitting or on the same day. They were told that their responses would be kept confidential within the research group. Participants were given a $25 incentive for completing baseline and returning all study materials.

Analytical Methods

The analysis includes 221 DHH youth 11–18 years of age. The associations between degree of hearing loss, quality of life, and other covariates were evaluated by conducting descriptive analyses, consisting of cross-tabulations, comparisons of means and variations, and correlations to examine bivariate associations between the following sets of covariates in the conceptual model: degree of hearing loss, demographic characteristics, school setting, parent characteristics, and quality of life (general and DHH specific). Chi-square or Fisher’s exact test of homogeneity was conducted on prevalence of youth across school types and communication characteristics of the youth by school placement. Because of skewness in the data, Fisher’s exact test results were used for geographical region, self-rated general health, mother’s and father’s hearing status, how parents communicate with youth at home, and language most often used at home.

Quality of life scales and CDI variables were scored and are described as follows. For the YQOL scores, the data were transformed to convert the lowest and highest possible scores to 0 and 100, respectively. Domain scores are formed by taking the mean of the items comprising the scale (as long as at least 80% of the scale items were nonmissing). If less than 80% of the items had responses, a missing value was assigned to the scale. The total score was derived by taking the mean of all the transformed items (at least 35 of the items must have responses for the total score to be computed).

The YQOL-DHH domain scores were also transformed to a 0–100 scale. For the Self-Acceptance/Advocacy and Participation domains, a higher score indicates a better quality of life. For the Perceived Stigma domain, a lower score indicates a better quality of life related to stigma. Domain scores were calculated by computing the mean for the items that comprised each scale. For the Perceived Stigma score, 196 of 212 youths (92.5%) reported some degree of perceived stigma (score > 0).

For the CDI, categories were transformed into T-scores, which were used to create depression categories, with higher scores indicating greater symptoms of childhood depression: slightly above average (56–60), above average (61–65), much above average (66–70), and very much above average (>70).

To examine the association among school placement and the three YQOL-DHH domains (Participation, Self-Acceptance & Advocacy, Perceived Stigma), three separate analysis of covariances (ANCOVAs) with school placement as an independent variable (school without DHH program, school with DHH program, and school for DHH) were run on 212 youth, with age, sex, hearing loss, and depression as covariates. All ANCOVAs were calculated using a Bonferroni adjustment for multiple comparisons. Data were analyzed using SPSS v18 and SAS 9.1 for Windows (SAS Institute, Inc., Cary, North Carolina).

Results

Sample Characteristics

Table 1 shows the descriptive results for the study sample. There were more participants from schools without a DHH program (n = 101, 45.7%) than those in schools with a DHH program (n = 57, 25.8%) or schools for DHH (n = 63, 28.5%). Participants who were homeschooled were excluded from analyses due to small sample size (n = 9). Most participants (40%) were from the western U.S. region and the fewest were from the northeast (4%). There were no significant differences for age category or gender. There were more children who were classified as Caucasian than other ethnicities (60.8%, p < .001). Sampling consisted of participants primarily in the severe/profound hearing status category (42%), followed by those with cochlear implants (26.9%). There were significant differences in maternal and paternal education levels across the three school placements.

Table 1.

Demographic and youth characteristics, by school placement (n = 221)

	Overall		School Placement						p value
			School without DHH program n = 101		School with DHH program n = 57		School for DHH n = 63
	%	(n)	%	(n)	%	(n)	%	(n)
Overall			45.7		25.8		28.5
Geographical region									.002
West	39.8	88	39.6	40	28.1	16	50.8	32
Midwest	25.3	56	32.7	33	26.3	15	12.7	8
Northeast	4.1	9	5.9	6	0.0	0	4.8	3
South	30.8	68	21.8	22	45.6	26	31.7	20
Age (years)									.462
11–14	56.1	124	60.4	61	54.4	31	50.8	32
15–19	43.9	97	39.6	40	45.6	26	49.2	31
Gender									.440
Female	49.8	110	49.5	50	43.9	25	55.6	35
Male	50.2	111	50.5	51	56.1	32	44.4	28
Race/ethnicity									<.001
Caucasian	60.8	132	75.3	73	42.1	24	55.6	35
Hispanic	15.7	34	6.2	6	28.1	16	19.0	12
African American	6.5	14	3.1	3	12.3	7	6.3	4
Other	17.1	37	15.5	15	17.5	10	19.0	12
Hearing level									<.001
Mild	11.9	26	18.2	18	12.3	7	1.6	1
Moderate/moderate–severe	19.2	42	26.3	26	21.1	12	6.3	4
Severe/profound	42.0	92	17.2	17	40.4	23	82.5	52
Cochlear implant	26.9	59	38.4	38	26.3	15	9.5	6
Mother’s education									<.001
College	61.5	123	73.7	70	44.0	22	56.4	31
Some college	18.5	37	10.5	10	28.0	14	23.6	13
High school/GED	13.5	27	14.7	14	12.0	6	12.7	7
Less than high school	6.5	13	1.1	1	16.0	8	7.3	4
Father’s education									.022
College	56.3	107	61.5	56	45.8	22	56.9	29
Some college	14.2	27	14.3	13	12.5	6	15.7	8
High school / GED	21.1	40	23.1	21	25.0	12	13.7	7
Less than high school	8.4	16	1.1	1	16.7	8	13.7	7
Mother’s and father’s hearing status									.001
No parent DHH	84.9	185	85.0	85	94.7	54	75.4	46
Single parent DHH	6.9	15	11.0	11	1.8	1	4.9	3
Both parents DHH	8.3	18	4.0	4	3.5	2	19.7	12
Missing		3		1				2

Percentages may not total to 100% due to missing values.

Table 2 shows the communication characteristics of the youth. A slight majority of youth preferred communicating using speech (54.4%), followed by sign language (30.9%), with a smaller percent having an equal preference for sign and speech (14.7%). As expected, communication mode preferences were not evenly distributed among the three different school placements. Youth in schools without a DHH program far preferred communicating in speech (83.2%). Youth in schools with DHH programs also had a majority who preferred speech (52.6%), but there was also a robust minority who preferred sign (28.1%) or had an equal preference (19.3%). Youth in day or residential schools for DHH students far preferred communicating in sign (74.6%), with smaller numbers of those who preferred speech (6.8%) and those who had an equal preference (18.6%).

Table 2.

Communication characteristics of youth by school placement (n = 221).

	Overall		School placement
			School without DHH program		School with DHH program		School for DHH
	%	(n)	%	(n)	%	(n)	%	(n)
Communication mode preference, N = 217
Speech	54.4	118	83.2	84	52.6	30	6.8	4
Sign	30.9	67	6.9	7	28.1	16	74.6	44
Equal Preference	14.7	32	9.9	10	19.3	11	18.6	11
Missing	1.8	4
How parents communicate with youth at home
Speech	49.1	(108)	68.3	(69)	59.6	(34)	7.9	(5)
Sign	18.6	(41)	4.0	(4)	12.3	(7)	47.6	(30)
Speech and sign	21.8	(48)	19.8	(20)	21.1	(12)	25.4	(16)
Gestures	0.5	(1)	0.0	(0)	0.0	(0)	1.6	(1)
Speech and gestures	6.8	(15)	6.9	(7)	5.3	(3)	7.9	(5)
Sign and gestures	2.7	(6)	1.0	(1)	1.8	(1)	6.3	(4)
Speech, sign, and gestures	0.5	(1)	0.0	(0)	0.0	(0)	1.6	(1)
Missing		1						1
Language most often used at home
English	68.6	(151)	89.0	(89)	73.7	(42)	31.7	(20)
ASL	19.1	(42)	5.0	(5)	12.3	(7)	47.6	(30)
PSE/MCE	1.8	(4)	1.0	(1)	1.8	(1)	3.2	(2)
Spanish	4.5	(10)	0.0	(0)	12.3	(7)	4.8	(3)
Other or multiple languages	5.9	(13)	5.0	(5)	0.0	(0)	12.7	(8)
Missing		1		1

Similarly, reports of how parents communicated with the youth at home were not evenly distributed. Parents of youth in schools without a DHH program and schools with a DHH program were more likely to report communicating in speech (68.3% and 59.6%) or speech and sign (19.8% and 21.1%) at home. Parents of youth in schools for DHH were more likely to report communicating in sign (47.6%), as well as sign and speech (25.4%) at home. Overall, the most common language used at home was English (68.6%), followed by ASL (19.1%), with a small percent reporting English-like signing (PSE/MCE, 1.8%) or Spanish (4.5%). The distribution of language preferences across school type was similar to the distribution of sign, speech, and equal preferences for modes of communication.

Analysis by School Placement

Aim 1: Examine the association among school placement and the three YQOL-DHH domains (Participation, Self-Acceptance & Advocacy, Perceived Stigma), with age, gender, hearing loss, and depression as covariates.

Table 3 shows the scores for each YQOL-DHH factor or domain, Participation, Self-Acceptance & Advocacy, and Perceived Stigma across the three different school placement types with age, gender, depression symptoms, and hearing level as covariates. Full results for the ANCOVA are shown in Table 4, including the effect sizes (partial eta squared). For school placement, there were no significant differences for any of the three YQOL-DHH factors. For age groups, there were significant differences for Participation between the younger age group (11–14 years) and the older age group (15–19 years), in that the younger group demonstrated higher Participation scores (higher is good/positive) than the older group (p < .001). However, the effect size for age was very small indicating that the magnitude of the differences was minimal (partial eta squared = .086). There were also significant differences for Self Acceptance & Advocacy by age (p = .041) but again with a very small effect size (p = .020). There were no significant differences by age for Perceived Stigma. For reported depressive symptoms (CDI-S T scores), there were significant differences in all three YQOL-DHH domains in that youth who had higher CDI-S scores (greater number of depression symptoms) had a lower quality of life scores for all three YQOL-DHH domains (Participation: p = .004; Self: p = .008; Perceived Stigma: p = .030). For gender, males score significantly better in the Self domain (p = .014; effect size = .029).

Table 3.

Descriptive means for YQOL-DHH scores (Participation, Self Acceptance & Advocacy, and Perceived Stigma) by school placement, age, gender, depression symptoms, and hearing loss for all youth

	Participation (n = 210)	Self Acceptance & Advocacy (n = 211)	Perceived Stigma (n = 196)*
Overall	59.9 (21.5)	75.7 (14.7)	20.8 (4.7)
School placement
School no DHH program	59.0 (21.9)	77.0 (15.4)	19.2 (3.5)
School with DHH program	59.5 (19.7)	74.0 (15.5)	20.1 (4.1)
School for DHH	61.5 (22.5)	75.3 (12.7)	24.3 (5.3)
Age (years)
11–14	66.0 (21.4)	77.9 (14.2)	19 (3.2)
15–19	52.2 (19.1)	72.9 (14.8)	23.5 (3.4)
Gender
Female	60.0 (21.5)	74.1 (14.9)	22.1 (3.5)
Male	59.8 (21.5)	77.2 (14.3)	19.5 (3.1)
Depression (CDI-S T-scores)
Below average (35–39)	76.3 (21.5)	84.5 (9.1)	13.1 (4.55)
Slightly below average (40–44)	69.3 (20.2)	80.7 (12.6)	14.5 (2.6)
Average (45–55)	51.0 (17.2)	72.6 (13.6)	35.7 (4.8)
Slightly above average plus (56–73)	42.5 (17.4)	62.2 (15.3)	43.7 (13.1)
Hearing level
Mild/unilateral	62.3 (23.2)	73.5 (16.7)	24.9 (9.0)
Moderate/moderate-severe	59.7 (22.9)	77.3 (16.3)	18.0 (4.5)
Severe/profound	59.4 (20.8)	72.9 (14.6)	23.9 (4.4)
Cochlear implant	59.7 (21.1)	79.9 (11.5)	17.4 (4.0)

*Perceived Stigma: Higher scores are associated with greater perceived stigma. N = 196 out of 212 youths (92.5%) reported some degree of perceived stigma (score > 0).

Table 4.

ANCOVA models on YQOL-DHH Scores (Participation, Self Acceptance & Advocacy, and Perceived Stigma) by school placement, adjusting for covariates (Age, Gender, Depression Symptoms, and Hearing Level) of youths for all youth

	df	F	p value	Partial eta squared
Participation
School	2, 207	1.16	.314	.011
Gender	1, 207	1.09	.299	.005
Hearing level	3, 207	.003	.959	.000
Age	1, 207	19.58	<.001	.086
Depression	3, 207	8.288	<.001	.038
Self
School	2, 208	.370	.691	.003
Gender	1, 208	6.15	.014	.029
Hearing level	3, 208	1.85	.176	.009
Age	1, 208	4.21	.041	.020
Depression	3, 208	7.17	.008	.033
Perceived Stigma
School	2, 192	1.12	.393	.010
Gender	1, 192	2.27	.133	.012
Hearing level	3, 192	1.28	.260	.007
Age	1, 192	1.69	.195	.009
Depression	3, 192	4.80	.030	.024

Aim 2: Examine the differences between YQOL-DHH domain scores between youth with hearing families versus those with families with at least one parent with hearing loss by school placement.

The data were also analyzed to explore any differences in YQOL-DHH scores between the youth with hearing parents (DOH) and those with deaf parents (DOD) by school placement. There were very few DOD youth in schools with DHH programs, so only schools with no DHH program and schools for DHH were analyzed. Descriptive data are in Table 5. An ANCOVA was calculated each of the three domains of the YQOL-DHH as dependent variables, using a Bonferroni adjustment for multiple comparisons.

Table 5.

Descriptive means for YQOL-DHH scores (Participation, Self Acceptance & Advocacy, and Perceived Stigma) by school placement and parent hearing status for all youth

	Participation (n = 123)	Self Acceptance & Advocacy (n = 123)	Perceived Stigma (n = 116)*
School for DHH
DOH	53.33 (19.6)	73.6 (12.9)	34.0 (18.7)
DOD	80.91 (14.4)	80.22 (11.9)	12.3 (13.5)
School without DHH
DOH	59.4 (21.8)	73.6 (12.9)	24.9 (21.1)
DOD	55.8 (23.0)	79.9 (12.1)	35.5 (21.9)

*Perceived Stigma: Higher scores are associated with greater perceived stigma. N = 196 out of 212 youths (92.5%) reported some degree of perceived stigma (score > 0).

There was a significant main effect for school placement only in the Participation domain (F(1, 123) = 9.28, p = .003, partial eta squared = .061). There were two significant interactions for School Placement × Parent Hearing Status: in the Participation domain (F(1, 123) = 10.84, p = .002, partial eta squared =.066) and in the Perceived Stigma domain (F(1, 123) = 9.20, p < .003, partial eta squared = .065). For the Participation domain in schools for DHH, DOD scored much higher than DOH youth (80.91 vs. 53.33), whereas their scores were more similar in schools with no DHH (55.8 vs. 59.4). In the Perceived Stigma domain, DOH youth reported higher stigma in School for DHH placements than their DOD peers; however, this relationship was reversed in placements with no DHH.

Aim 3: Compare generic quality of life across DHH and general population youth sample using a generic quality of life instrument, YQOL-R.

The YQOL-R is a generic instrument, and scores from the DHH youth were compared with data from a previous study on typically developing youth (general population, n = 116; Patrick, Edwards, & Topolski, 2002). Table 6 shows the demographic characteristics of the two samples. Table 7 shows the means, standard errors, and the 95% confidence interval, as well as how the groups differed from each other, using t-tests. In comparison with the general population, the DHH group differed significantly on the domains of Sense of Self (p = .036) and Relationships (p = .003), with lower scores than the general population, but DHH youth did not differ on the Environment domain or Total Score. When comparisons were made between the general population and the DHH grouped by type of school, however, differences found were mostly lower YQOL-R scores for DHH youth in the schools with DHH programs. These youth differed significantly from the general population in all four domains of the YQOL-R (range of p values < .001–.008). There were no significant differences between the general population and the DHH youth from schools without DHH program. DHH youth from schools for DHH differed from the general population in one domain, Relationships (p = .007).

Table 6.

Sample demographic characteristics by study group

	General population % (n = 116)	DHH % (n = 221)
Age in years
11–14	36	56
15–18	64	44
Gender
Female	41	50
Male	59	50
Ethnicity
White	75	61
Hispanic	0	16
African American	5	6
Other/mixed	20	17

Table 7.

Difference in mean YQOL-R domain scores by study group

	YQOL-R adjusted mean ± SEa	95% confidence interval for adjusted meana	Difference from general population
			Mean ± SE	p -value
General populationb
Total	82.20±1.14	(79.95, 84.45)
Self	78.77±1.28	(76.26, 81.29)
Relationship	80.79±1.43	(77.97, 83.62)
Environment	87.56±1.14	(85.31, 89.81)
DHH—all school types
Total	80.25±0.80	(78.69, 81.81)	−1.95±1.39	.162
Self	75.48±0.90	(73.72, 77.24)	−3.29±1.56	.036
Relationship	75.83±0.88	(74.11, 77.55)	−4.96±1.68	.003
Environment	85.03±0.77	(83.52, 86.55)	−2.53±1.38	.066
School without DHH program
Total	82.20±1.20	(79.83, 84.57)	0.00±1.66	1.000
Self	77.53±1.36	(74.85, 80.21)	−1.24±1.87	.507
Relationship	78.17±1.33	(75.55, 80.79)	−2.62±1.95	.180
Environment	86.17±1.17	(83.85, 88.48)	−1.39±1.63	.395
School with DHH program
Total	76.92±1.57	(73.82, 80.02)	−5.28±1.94	.007
Self	72.95±1.77	(69.45, 76.44)	−5.82±2.18	.008
Relationship	72.87±1.71	(69.49, 76.25)	−7.92±2.23	<.001
Environment	82.28±1.51	(79.30, 85.27)	−5.28±1.89	.005
School for DHH
Total	80.28±1.50	(77.33, 83.24)	−1.92±1.88	.308
Self	74.64±1.69	(71.31, 77.97)	−4.13±2.12	.051
Relationship	74.93±1.65	(71.68, 78.18)	−5.86±2.18	.007
Environment	85.81±1.46	(82.93, 88.68)	−1.75±1.85	.345

^aAdjusted for covariates: age and CDI depression symptom scores.

^b Patrick, Edwards, & Topolski (2002).

Discussion

In the current study, there were no differences in the YQOL-DHH, the DHH-specific instrument, related to school placement on any of the three factors (Participation, Self Acceptance & Advocacy, and Perceived Stigma) after adjusting for age, gender, depression symptoms, and hearing level as covariates. Youth in all three placements generally reported positive quality of life scores. This cannot be interpreted that school placement is not a quality of life issue, however, because hearing status and communication preference are confounded with type of school placement. Our results are similar to those found by Hintermair (2011) in that DHH students placed in regular classrooms do not display lower quality of life, even when quality of life measures are evaluating aspects that may be directly impacted by hearing loss, as with the current study. DHH students in schools with no DHH program had more hearing and were more likely to prefer to communicate by speech. DHH students in schools for DHH had more significant hearing losses and were more likely to communicate using sign and speech or sign alone. This situation is common and consistent with recent distributions of DHH students with hearing loss (Gallaudet Research Institute Annual Survey, 2007–2008; Schildroth & Hotto, 1996; Stinson & Antia, 1999). However, an investigation of how communication mode was related to quality of life in the current sample (Kushalnagar, et al., 2011), using the instruments in the current study, found that the majority of youth reported high quality of life, regardless of preferred communication modality, degree of hearing loss, or cochlear implant usage. Higher youth perception of their ability to understand parents’ communication was significantly correlated with perceived quality of life related to Self Acceptance & Advocacy, Participation, as well as lower reported Perceived Stigma and depressive symptomatology. A more cautious interpretation of the lack of differences based on school placement would be that many of these students are appropriately placed for their needs, and their perception of their quality of life reflects needs being met.

There were differences for the two age groups on a single domain from the YQOL-DHH; younger students (11–14 years) had more positive Participation scores than the older group (15–19 years). The effect size was quite small as to be essentially negligible from an educational perspective. This is similar to results found in a study of mainstreamed DHH youth, grades 10–12, who also represented a wide range of hearing levels and school types (Stinson, Whitmire, & Kluwin, 1996). The students who were in grade 12, and mainstreamed with hearing students a greater number of hours of the day, presented significantly lower scores in participation in school and social activities. These differences may reflect differences in the educational environment for younger ages and in middle school versus the environment in high school. They may also reflect that social interaction issues become more important in the high school years. The transition into adolescence is a period of rapid change in the context of social interaction, and peer relationships are an essential component to personality and cognitive growth (Harter, 1990; Whitmire, 2000). Friendships become more intense and essential for problem solving, and cliques are common (Brown, 1990; Harter, 2003; Newcomb & Bagwell, 1995). It may be that the older youth were less able to transition into this period of adolescence as easily, or they were more aware of the challenges in communication with peers and adults. This is a particular concern because research has consistently shown that for DHH students, participation and communication with teachers and peers is a predictor of academic success (Antia, Jones, Reed, & Kreimeyer, 2009; Antia, Sabers, & Stinson, 2007; Kluwin, Stinson, & Colarossi, 2002; Long, Stinson, & Braeges, 1991; Luckner & Muir, 2001; Stinson & Liu, 1999; Stinson & Antia, 1999). For example, in a study of students in inclusive settings, the students self-rating of their classroom participation predicted 43% of the variance associated with academic achievement, even though degree of hearing loss was not predictive (Antia, Sabers, & Stinson, 2007). There is also evidence that participation is related to academic success in hearing students as well (Voelkl, 1995; Wang & Holcombe, 2010). The lower scores in the Participation domain for the older students in the current study may have educational significance.

Data analysis was conducted to compare the differences between youth who have at least one DHH parent versus those with hearing parents. Because there were so few DHH youth with a DHH parent in a school with a DHH program, the data were analyzed for only youth in schools with no DHH program or schools for DHH. There were significant differences between DOD and DOH youth in YQOL-DHH scores according to school placement. Interestingly, there was a significant interaction effect for school placement by parent hearing status both in Participation and in Perceived Stigma. DOD youth reported much higher Participation scores in schools for DHH than in schools with no DHH, although the effect size was small (.070). DOH youth reported more perceived stigma in schools for DHH than their DOD peers, but this relationship was reversed in the school with no DHH placement, where the DOD youth reported higher perceived stigma. Although the differences are small, the trends might indicate that placement may affect DOD and DOH somewhat differently. Without additional information regarding the circumstances and parent/youth decisions related to the DOH youth being placed in a school for DHH, one could only speculate about the nature of these differences. It is more common for a DHH student to be placed in a school for DHH students as they get older, and that younger children are more likely to be placed in a school without a DHH program or a school with a special program (Mitchell & Karchmer, 2011). It is entirely possible that the differences between the DOD and DOH students in the schools for DHH reflect earlier placements, as well as their current placement in a school for the DHH.

The current study also included the YQOL-R, a generic instrument that was developed and designed for hearing students. The YQOL-R has been used in previous studies to investigate typically developing hearing students (Patrick, Edwards, & Topolski, 2002). When the DHH youth are compared with the general population, they scored lower in the domains of Self and Relationships but did not differ on the Environment domain or the Total Score. However, when the data were examined according to school placement, the differences were mostly due to the fact that the DHH students in schools with DHH programs scored lower than the general population in all four domains of the YQOL-R.

The finding that aspects of quality of life might be somewhat lower for DOH youth in schools with DHH is an interesting finding because it is often presumed that schools that consolidate DHH students might be a better placement than schools with no program. However, there can be negative consequences of a program where DHH students and hearing students are mixed. As previously reported, Leigh (1999) conducted a study where she surveyed 34 DHH adults who had been educated in hearing schools, some with other DHH students, asking them to reflect on their experiences. Although more were positive, there were negative emotions related to insecurity and self-esteem. In addition, some reported negative interactions with other DHH peers because of different values and different hearing versus deaf identities. Because these schools have fewer DHH students than hearing students, DHH students may have fewer choices about who they are grouped with and can socialize with. It may be that being in a program that combines DHH and hearing students provides more opportunities for interactions that may cause one to reflect on their well-being.

In general, the current study shows that issues related to quality of life across school settings are not simplistic and that one type of placement does not emerge as being clearly better than others. In fact, placements that are often considered better may have somewhat negative consequences for subgroups of DHH, such as those DOH students in schools for DHH, and DHH students in schools with DHH programs. In addition, these issues are highly complicated by the changing nature of the DHH population, with better speech and language outcomes than in the past. Because these changes are ongoing, our current knowledge of today’s cohort of DHH children must be considered incomplete, and research that is 10 years old may not be representative of our current population (see Spencer & Marschark, 2010).

From an educational perspective, the newly developed YQOL-DHH could be used to help examine a DHH student’s perception of their quality of life. Results from the YQOL-DHH might also be used in discussions related to school placement, in addition to the typical academic factors, especially given that factors such as participation and communication are associated with academic success. The results may help school personnel to modify aspects of the school program to improve quality of life. For example, the DHH adults in a study by Leigh (1999) reported that the majority of those adults who reported positive perceptions of their mainstream schooling talked about “supportive teachers who provided needed attention and friendly social environments” (p. 240). They also conveyed that disciplined and structured school programs were related to more positive experiences. In contrast, nonsupportive school environments contributed to negative perceptions. Stinson and Liu (1999) conducted a qualitative study of factors that encouraged participation of DHH students in a mainstream setting and barriers to participation. Many of the factors involved openness, positive attitudes, providing information to the hearing students about hearing loss and communicating with a DHH student. The YQOL-DHH can provide quality-of-life information that could be used in conjunction with other data to assess whether interventions are needed in specific school settings.

IDEA guidelines are clear that youth are to be included in their IEP meetings and decisions made concerning them. In addition, a U.S. Department of Education policy guidance paper (U.S. Department of Education, 1992) made it clear that program placement for DHH students must consider both communicative and social needs. However, until now, there were no valid and reliable means to assess a DHH youth’s quality of life and to obtain information that reflects what other DHH youth and young adults believe contributes to their quality of life. As reported in the introduction, many current quality of life instruments equate ability to hear with better quality of life. The YQOL-DHH instrument is different in that this was designed to assess aspects related to youth perceived quality of life such as communication, participation, respect, and feelings about self, regardless whether they communicate using sign or speech. Research on this sample showed that mode of communication did not relate to quality of life, but the perception of the youth’s ability to communicate with family did (Kushalnagar, et al., 2011). The YQOL-DHH would provide the IEP team with an additional tool to help assess this important aspect of life.

The current study is based on a convenience sample that, although large, is still self-selected. Both the youth and the parent had to agree to participate. The sample is also skewed in the distribution of parent education. It is possible and plausible that the sample included more youth who were positive about their well-being or households where parents and youth are more engaged and resilient. In addition, although we recruited from schools and school districts, we also recruited through a great number of other sources, so students are from a variety of schools. Although this could be seen as a strength, there are considerable differences across different schools for the DHH and integrated settings. It would be important to study school placement with much greater detail on the characteristics of the schools, attitudes of the teachers, numbers of DHH youth, as well as the individual DHH student’s history of school placement. The YQOL-DHH would allow a more fine-grained study of issues related to how home communication, educational practices, and placement are related to a youth’s perception of their well-being.

Funding

University of Washington from the National Institute on Deafness and Other Communication Disorders (1 R01 DC008144-01A1) to D.P.

Conflict of Interest

No conflicts of interest were reported.

Appendix: Examples of Survey Items in Each of the Three YQOL-DHH Domains

Participation

Note d/hh is spelled out in the actual survey.

• Because I am deaf or hard of hearing, I feel left out of family conversations.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• I miss out on activities and things I want to do because I am d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• I feel life is harder for me because I am d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

Self Acceptance and Advocacy

• I know how to stand up or speak up for myself as a person who is d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• As a person who is d/hh, I feel accepted by students at my school.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• I feel included in the things my family does together.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

Perceived Stigma

• I feel people bully me because I am d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• I feel people think I am dumb because I am d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH

• I get upset when people do not understand what I am saying, as a person who is d/hh.

• NOT AT ALL 0 1 2 3 4 5 6 7 8 9 10 VERY MUCH