Mental Health Treatment Engagement among Deaf Individuals

Abstract

Objective:

Members of the U.S. Deaf community experience higher rates of mental health problems, but there is currently no empirical data on their treatment engagement. This cross-sectional study analyzed novel mixed-methods data on Deaf adults’ current mental health symptoms, treatment engagement, and treatment experiences.

Methods:

Seventy-one Deaf adults recruited from across the U.S. completed screening assessments on Zoom.

Results:

Sixty-three percent screened positive for one or more current mental health problems, yet only 31% of those individuals were engaged in treatment. Participants reported multiple barriers to treatment engagement, including communication incompatibilities, limited culturally appropriate options, confidentiality concerns, and perceived ineffectiveness of treatment.

Conclusions:

Results suggest significant treatment disparities. Strategies are needed to overcome the barriers encountered by Deaf adults, including increasing the number of Deaf providers, training providers to work with Deaf patients, and developing interventions to assist Deaf individuals in modifying beliefs about treatment and problem-solving barriers to treatment-seeking.

The U.S. Deaf community, a sociocultural group of more than one million individuals who use American Sign Language (ASL),¹ is one of the most understudied populations in mental health.² Epidemiological literature is extremely limited due to a lack of linguistically and culturally appropriate mental health assessments and studies that do not effectively distinguish between culturally Deaf individuals and individuals with hearing loss who do not identify with the Deaf community.³ However, available data suggests that mental health disparities impact Deaf individuals, including a higher prevalence of anxiety, depression, trauma, and suicidal thoughts and behaviors.^2,4,5 These disparities may result from barriers to accessing treatment. Common barriers reported in the literature include fear and mistrust of the healthcare system, communication barriers, limited access to health information, a lack of culturally appropriate services, stigma, and confidentiality concerns within the Deaf community.^2,3 However, there is no currently available empirical data on rates of mental health treatment engagement among Deaf individuals.

This cross-sectional study examined current mental health symptoms and treatment engagement among Deaf adults who completed screening assessments. Qualitative data about past treatment experiences is presented to contextualize quantitative findings.

Methods

This study was approved by the University of Rochester’s Research Subjects Review Board. Participants were informed of the study’s aims, methods, data storage, risks, benefits, affiliations, and funding before consenting to the screening assessment.

Participants were 71 Deaf adults screened between February and April 2022 for participation in a larger project. Online announcements (in English and ASL) invited Deaf adults who drink alcohol or were experiencing stress to provide their perspectives on mental health treatment. Eligibility criteria included self-identification as Deaf or hard-of-hearing (any degree of hearing loss if they considered themselves part of the Deaf community), 18 years of age or older, and ASL as their primary communication method. The sample included Deaf adults across the lifespan (range = 20 – 70 years; M = 38.04, SD = 11.38), and is similar to published estimates of the U.S. Deaf community in terms of gender and race distribution (published estimates provided in brackets).⁶ Fifty-six percent of the sample was male [57%], 42% female [43%], and 2% transgender. Seventy-six percent of the sample was White [84.2%], 7% Black/African American [7.9%], 5.6% Asian [2.4%], 1.4% Native Indian or Alaskan Native [1%], 1.4%, Middle Eastern [2.4% other race], and 8.5% multiracial [1.8%]. Eleven percent were Hispanic/Latino.

Participants completed screening assessments on Zoom with a Deaf clinical psychologist (first author). English measures used in previous studies with Deaf adults⁷ were presented via screen share because ASL translations for mental health screeners with published validation data were not publicly available when data collection began. The psychologist signed all of the instructions and remained available to translate the items into ASL if requested. There were several requests to translate a few items on each measure and a couple of requests to sign all the items across the measures.

Participants completed a demographic survey; a survey assessing past and current engagement in mental health treatment (excluding self-help, peer support, and emergency department visits),⁸ which included a description of past treatment experiences (e.g., Deaf or hearing provider, access barriers, overall impression of the treatment experience); and four mental health screeners: the Patient Health Questionnaire – 9 (PHQ-9),⁹ General Anxiety Disorder Scale (GAD-7),¹⁰ PTSD Checklist for DSM-5 (PCL-5),¹¹ and Insomnia Severity Index (ISI).¹² We used the following clinical cut-offs reported in the literature with hearing individuals (there are no evidence-based cut-off scores for Deaf individuals) as positive screens indicating a need for treatment: ≥ 10 on the PHQ-9 and the GAD-7,^9,10 ≥ 31 on the PCL-5,¹¹ and ≥ 15 on the ISI.¹² All measures demonstrated good internal reliability with alphas of .84 for the PHQ-9, .88 for the GAD-7, .94 for the PCL-5, and .89 for the ISI.

Descriptive statistics and t-tests were conducted using IBM SPSS Statistics, version 28.¹³ Inferential tests were two-tailed with an a priori alpha of .05. Qualitative descriptions of treatment experiences were analyzed using the Framework Method.¹⁴ The analytical process consisted of five stages: familiarization, coding, developing a thematic framework, applying the framework, charting, and interpretation.¹⁴

First, the primary researcher read through the written responses to get an overall impression of the data (familiarization). Then they sifted through the data, highlighted, and sorted out text to identify meaningful units (coding). The identified codes were grouped and used to develop a thematic framework (developing a thematic framework). The researcher then applied this framework by sorting through the participant data, lifting meaning units (i.e., participant quotes) from their original context, and re-arranging them under the thematic categories (applying the framework). The researcher then outlined the relationships between the meaning units within each thematic category and summarized their contents (charting). Finally, the resulting thematic framework and the descriptions were used to interpret the relationships between each thematic category and the whole (interpretation).

Results

Sixty-three percent of participants screened positive for one or more mental health problems, yet only 31% of these individuals were currently engaged in treatment. Anxiety was the most common problem (54.9%), followed by depression (52.1%), PTSD (43.7%), and insomnia (36.6%). The means, standard deviations, % positive screens, and % engaged in treatment for each screener are listed in Table 1 in the Supplemental Materials. T-tests comparing mean symptom severity scores among individuals with positive screens who were engaged in treatment and those not engaged revealed no differences (depression t(37) = −1.65, p = .11; anxiety t(35) = −.853, p = .40; PTSD t(29) = −.911, p = .37; insomnia t(24) = .190, p = .85), suggesting an equal need for treatment, as well as the possibility that the treatment received may not be fully meeting Deaf individuals’ needs (Supplemental Materials Table 2).

Fifty individuals (70.4%) reported prior treatment experiences. About half (46%) reported multiple previous treatment experiences, for which they saw a mix of hearing and Deaf providers with varying levels of fluency in ASL and experience working with Deaf individuals. Table 1 presents the themes of past treatment experiences and percentages of participants endorsing each theme. Additional descriptions of the thematic content are available in Table 3 of the Supplemental Materials. Participants reported several barriers to receiving appropriate treatment (Access Barriers). The most common barrier was having limited options for culturally relevant care in their area such as specialty Deaf treatment centers (e.g., the Deaf Wellness Center), Deaf mental health professionals, or providers who are fluent in ASL and trained to work with Deaf individuals. Participants reported several concerns about seeking treatment from hearing providers, including communication barriers as accommodation requests (e.g., ASL interpreters, captioning, etc.) are often not fulfilled, and concerns about the quality of treatment as a hearing provider would not be familiar with Deaf culture and therefore would not be able to engage in discussions about how cultural factors impact their mental health. The participants also reported concerns about seeing providers embedded within the Deaf community due to issues of confidentiality and multiple relationships, or the assumption that Deaf providers would have less specialized training in working with specific mental health conditions (e.g., bipolar disorder, PTSD, OCD, etc.) than hearing providers due to the barriers that Deaf people face in education and employment (e.g., discrimination, communication access, etc.).

Table 1.

Qualitative Treatment Experiences (n = 50)

Theme	Percent
Access Barriers
Limited options for culturally competent treatment	22%
Confidentiality and multiple relationship concerns with Deaf providers or interpreters	16%
Hearing providers’ limited knowledge of Deaf culture	14%
Financial barriers	14%
Communication barriers	12%
Lack of rapport with hearing providers or treatment programs	6%
Concerns about Deaf providers' training and qualifications	4%
Treatment Experiences
Positive	38%
Negative	18%

Note. This table presents data for participants who reported a history of mental health treatment.

There was significant variation in satisfaction with services. More than one-third (38%) of past treatment receivers reported positive experiences such that their symptoms reduced, functioning improved, or they obtained emotional support. Of those individuals, five reported seeing a non-signing hearing provider and the remaining 14 saw a Deaf or ASL-fluent provider. Nine (18%) reported negative experiences such as not benefitting, feeling overwhelmed, or experiencing negative side effects.

Discussion

Our findings reveal a high level of unmet mental health treatment needs among a community sample of Deaf adults. Sixty-three percent screened positive for one or more mental health problems, yet only 31% of these individuals were currently engaged in treatment. This proportion is considerably lower than the 44.8% of the general population with mental health disorders who receive treatment in a given year.¹⁵

Participants reported numerous barriers to seeking treatment—most commonly, the inability to find providers who understood ASL and Deaf culture. When seeking treatment with hearing providers, communication barriers were common, including unlawful denial of interpreters and other necessary accommodations, resulting in poor quality communication and a lack of rapport. When Deaf providers were available, participants reported difficulties having appropriately bounded relationships with them as they were often members of the same small community. Participants worried about confidentiality when seeing Deaf providers or using ASL interpreters for sessions. These barriers exceed the barriers traditionally encountered by hearing individuals, such as time commitment and cost.

When Deaf individuals do access treatment, it can be beneficial. Thirty-eight percent of those who attended treatment reported positive experiences, while only 18% reported negative experiences (the remaining did not qualify their experiences). Improving access to treatment and increasing treatment-seeking behaviors could reduce mental health disparities.

Initiating treatment involves identifying a qualified provider, ensuring sufficient resources (e.g., insurance, childcare), and developing rapport. These tasks are already challenging given internal resources may be limited when experiencing a mental health problem. Given the additional barriers encountered by Deaf individuals and the fact that most information about treatment is provided in English which not all Deaf individuals can easily access, Deaf individuals may benefit from additional support to assist them through the process.

This study has several limitations. The sample was small, with individuals who responded to advertisements on alcohol use or stress, which may have biased the results. Results may not generalize to the full U.S. Deaf community; however, our sample is comparable in terms of age, gender, ethnicity, and race.⁶ Additionally, the interviews were brief, data were based on self-report, in-depth diagnostic information was not obtained, and only one researcher performed the qualitative analyses of past treatment experiences. Finally, for participants currently engaged in treatment, we did not collect information about the type, quality, or length, therefore, we cannot determine whether the mean symptom severity scores were similar to those not in treatment due to an equal need for treatment or other factors related to the treatment received.

Conclusions

Results suggest disparities in mental health treatment receipt for Deaf adults. Large epidemiological surveys with Deaf individuals are needed to confirm the prevalence of mental health problems and treatment engagement. Validated mental health assessments in ASL are needed to support this work. While initial work is being done to develop and validate assessment tools in ASL, most of these measures are not yet publicly available. In addition, strategies are needed to overcome the multiple barriers encountered by Deaf adults seeking treatment including increasing the number of Deaf providers, training providers to work with Deaf patients, and developing interventions to assist Deaf individuals in modifying negative beliefs about treatment and problem-solving barriers to treatment-seeking.

Highlights:

• This cross-sectional study examined current mental health symptoms and treatment engagement among 71 Deaf adults recruited from the community.

• Sixty-three percent screened positive for one or more current mental health disorders; yet, only 31% of those individuals were engaged in mental health treatment, suggesting critical disparities in mental health treatment receipt.

• Strategies are needed to overcome the multiple barriers to treatment encountered by Deaf adults, including increasing the number of Deaf providers, training providers to work with Deaf patients, and developing interventions to assist Deaf individuals in modifying their beliefs about treatment and problem-solving barriers to treatment-seeking.