Deaf Perceptions about Treatment for Alcohol Use and Mental Health

Abstract

Introduction:

Recent research suggests that alcohol use disorder may be more prevalent in the Deaf community, a diverse sociolinguistic minority group. However, rates of treatment-seeking among Deaf individuals are even lower than in the general society. This study used the Theory of Planned Behavior to identify Deaf adults’ beliefs about treatment that may prevent their treatment-seeking behaviors.

Methods:

This study conducted elicitation interviews with 16 Deaf adults. The study team recruited participants from across the U.S. and conducted interviews on Zoom. Participant ages ranged from 27 to 67 years (M = 40, SD =10.8). Seventy-five percent of the sample was male, 75% were White, and 12.5% were Hispanic/Latine. The study conducted interviews in American Sign Language, subsequently interpreted into English by a nationally certified interpreter, and transcribed for data analyses. The study analyzed transcripts using the Framework Method. The study team coded the interviews in groups and assessed for saturation (≤ 5% new themes) of themes throughout the analysis. This study reached saturation in the third group (six total groups).

Results:

Identified themes followed the Theory of Planned Behavior constructs. The study identified nine Behavioral Beliefs with four advantages and five disadvantages of seeking treatment, four Normative Beliefs with one support and three oppositions to seeking treatment, and thirteen Control Beliefs with five facilitators and eight barriers to seeking treatment. Overall, the Deaf participants reported several unique beliefs based on their cultural and linguistic perspectives, including a concern about unqualified providers, experiencing stress in treatment with hearing providers, stigma within the Deaf community, less access to cultural information about alcohol and mental health, less encouragement of traditional treatment in marginalized communities, and additional barriers (e.g., communication, limited Deaf treatment options, discrimination, etc.).

Conclusions:

A thorough understanding of individual beliefs about treatment is necessary to develop interventions that may increase treatment-seeking behaviors. Previous research has demonstrated that individual beliefs may be modified using Cognitive Behavioral Therapy techniques to increase treatment-seeking behaviors among hearing individuals. Similar interventions may be useful with Deaf individuals; however, they must consider the unique cultural and linguistic perspectives of the community.

1. Introduction

Alcohol Use Disorder (AUD) is one of the most prevalent behavioral health disorders worldwide and is associated with great financial costs and negative impacts on physical health, psychological health, and social relationships (Grant et al., 2015; Rehm et al., 2009). Compared to the general population, recent research suggests that AUD may be more prevalent in the U.S. Deaf¹ community (Anderson et al., 2018; McKee et al., 2019), a diverse sociolinguistic minority group consisting of over one million individuals who use American Sign Language (ASL; Leigh et al., 2020; Mitchell & Young, 2023). Secondary analyses of large data sets including the National Health and Nutrition Examination Survey (NHANES) and the National Survey on Drug Use and Health (NSDUH) have demonstrated that Deaf individuals are three times as likely as hearing respondents to be classified as “heavy alcohol users,” (Anderson et al., 2018) and among individuals aged 35 – 49 years old, they are more likely to meet the criteria for AUD (McKee et al., 2019). Deaf individuals’ increased risk for AUD may be due to unique risk factors stemming from their minoritized position in a majority-hearing society (Anderson et al., 2018). These factors include higher rates of trauma, depression, and anxiety (Anderson et al., 2016; Kushalnagar et al., 2019); language and communication barriers (Aldalur et al., 2021; Murray et al., 2007; Stapleton, 2015); isolation (Aldalur et al., 2021; Najarian, 2008); discrimination (Aldalur et al., 2022; Gournaris & Aubrecht, 2013; Punch et al., 2007); and a lack of accessible prevention materials (Titus et al., 2008).

1.1. Access to AUD Treatment

Despite the prevalence and financial burden of AUD, only a small percentage of individuals within the general population obtain treatment (Hasin & Grant, 2015). According to data from the 2019 NSDUH, only 7.3% of adults with an AUD in the U.S. received treatment in the past year (National Institute on Alcohol Abuse and Alcoholism, 2021). Given the significant disease burden of AUD, the unmet treatment needs among the general population is a public health concern (Carvalho et al., 2019).

Deaf individuals may be even less likely to seek treatment than their hearing counterparts. Several unique factors likely influence Deaf individuals’ decision and ability to seek treatment including having limited access to health information and lower rates of health literacy, fear and/or mistrust in healthcare settings due to histories of oppression, fear of stigmatization within the Deaf community, barriers to communication with hearing providers, and a general lack of culturally and linguistically appropriate services for the Deaf community (Fellinger et al., 2012; Guthmann & Blozis, 2001; Kuenburg et al., 2016; McKee et al., 2015).

1.2. Treatment-Seeking

While practical barriers such as time, cost, and transportation certainly play a role in restricting access to professional treatment services, the most commonly reported reasons for not seeking treatment are individual factors such as lack of understanding of AUD and treatment, beliefs about seeking treatment, the emotional complexities that accompany accepting a need for treatment, and the potential stigma associated with AUD and seeking treatment (SAMHSA, 2020; Stecker et al., 2012). For instance, in the 2019 NSDUH, only 4.3% of individuals classified as having a substance use disorder reported that they perceived a need for treatment. Among those with a perceived need for treatment, commonly reported barriers included not being ready to stop using (39.9%) and not knowing where to go for treatment (23.8%; SAMHSA, 2020). Other researchers have found that individuals with AUD are more likely to report doubts about the treatment process, report fear (physical or psychological) of discomfort during treatment or fear of admitting they have a problem, and minimize the severity of their alcohol use (i.e., the problem is not serious enough for treatment, they should be able to handle the problem on their own, their problem will get better on its own; Grant, 1997; Saunders et al, 2006; Stecker et al., 2012; Tucker et al., 2004; Rapp et al., 2006).

1.2.1. The Theory of Planned Behavior

The Theory of Planned Behavior (TPB) provides a framework for understanding factors that influence an individual’s decision to seek treatment (Ajzen, 1991). The TPB purports that the decision to engage in any behavior can be traced to the person’s beliefs about the behavior, including their beliefs about the likely consequences of a behavior (behavioral beliefs), beliefs about the normative expectations of others in one’s community (normative beliefs), and beliefs about the factors that may facilitate or prevent performance of the behavior (control beliefs; Ajzen, 1991). An individual’s behavioral beliefs produce a favorable or unfavorable attitude toward a behavior. Normative beliefs result in perceived social pressure or a subjective norm. Control beliefs give rise to one’s perceived behavioral control or capability of performing a behavior. Considered together, an individual’s attitude, subjective norm, and perceived behavioral control lead to the formation of an intention, with more favorable beliefs leading to stronger intentions to perform the given behavior (Ajzen, 1991).

In a series of studies using TPB to examine treatment-seeking beliefs among veterans and civilians, Stecker and colleagues (2007) identified several beliefs that may influence an individual’s decision to seek treatment (Stecker et al., 2007; Stecker et al., 2010; Stecker et al., 2012). These beliefs included the expectation of improved symptoms, the desire to handle problems on their own, the belief that treatment wouldn’t work for them, and beliefs related to stigma and self-stigma (Stecker et al., 2007; Stecker et al., 2012). Furthermore, beliefs about treatment were shown to have a significant impact on individuals’ intent to engage in treatment, and individuals’ intent predicted their actual treatment engagement at three months follow-up (Stecker et al., 2010).

The results of these studies highlight the fact that simple access to treatment is not enough to motivate individuals to seek care when it is needed (Stecker et al., 2010). Individual beliefs about treatment must be taken into consideration. The TPB provides a valuable framework for understanding treatment-seeking behaviors.

1.3. Deaf Beliefs about AUD Treatment

The Deaf community remains one of the most understudied communities in the field of behavioral health. Thus, little is known about Deaf individuals with AUD, their access to treatment, or their beliefs about treatment. Given the unique cultural and linguistic experiences of Deaf individuals and their experiences within the healthcare system, it is likely that they hold different beliefs about treatment compared to hearing individuals, necessitating an understanding of these beliefs. A better understanding of the underlying determinants of treatment-seeking may provide critical information for the development of interventions designed to encourage treatment-seeking among Deaf individuals.

2. The Current Study

The current study aimed to explore the individual beliefs that may influence Deaf individuals’ decision to seek treatment for AUD. The study was designed using the TPB as a framework. For the purposes of the current study, we identified the target behavior as seeking treatment from a physician, counselor, or specialty treatment center for the treatment of AUD. To obtain information about the participant’s behavioral, normative, and control beliefs, we conducted elicitation interviews following the TPB. In contrast to traditional qualitative interviews intended for open coding, elicitation interviews are designed to collect specific information about predetermined constructs. The beliefs identified in this manner can be used for the future development of intervention programs.

3. Materials and Methods

3.1. Description of Research Team

The primary researcher is a female, Deaf, Latina licensed clinical psychologist fluent in ASL and English. She obtained her Ph.D. from Gallaudet University with a specialization in working with the Deaf population. She has worked with Deaf adults in various clinical settings, including working with individuals presenting with co-occurring AUD and mental health problems. She now focuses on clinical treatment research with the Deaf community, including the adaptation and development of evidence-based interventions. The overall research team consisted of the primary researcher’s mentorship team and a research assistant. The mentorship team included mentors with expertise in AUD, treatment-seeking, clinical treatment, and research with Deaf individuals. To limit the impact of personal bias during data collection, analysis, and interpretation, the primary researcher worked closely with a research assistant. This collaboration limited the influence of any one researcher’s personal beliefs in the collection and interpretation of the participant’s data. The research assistant was a male, hearing, White medical student fluent in ASL and English who received his bachelor’s degree in ASL and has experience working with Deaf individuals in AUD treatment centers.

3.2. Participants

The study enrolled Deaf adults, who identified ASL or Pidgin Signed English (PSE) as their primary communication method, screened positive for AUD, and were not connected to alcohol-specific treatment or mental health counseling at the time of screening in the winter and spring of 2021. The study team recruited participants using digital flyers and signed video announcements posted on social media platforms and shared with Deaf community organizations. Additional recruitment efforts included snowball sampling and utilization of the University of Rochester study Deaf participant databases. There was no prior relationship with the participants before the commencement of the study. Interested participants contacted the primary researcher by email or video phone (VP) to schedule a screening assessment on Zoom.

A total of 69 participants completed screening. Twenty-eight individuals screened positive for AUD and five were excluded because they were in counseling. Thus, 23 individuals met the inclusion criteria. Four of the eligible individuals could not be reached prior to completing the consent process (scheduled on a different day than their screening assessment), and one individual declined participation. Eligible individuals who were not able to complete the written consent process after the screening assessment granted verbal permission to send an email with the link to the electronic consent form on Research Electronic Data Capture (REDCap; Harris et al., 2009) and an ASL video of the content of the consent form. These individuals contacted the primary researcher when they were ready to proceed with the informed consent process. Eighteen individuals consented and enrolled in the study. Two consented individuals did not attend their scheduled interview session. The primary researcher contacted these participants via email to reschedule their interviews and followed up with them weekly until no response was received for two weeks in a row. A total of 16 individuals completed the interview process. Participant ages ranged from 27 to 67 years (M = 40, SD =10.8). Demographic information for the participants is provided in Tables 1 and 2.

Table 1.

General Demographics (n = 16)

Category	Variable	Frequency	Percent
Gender	Male	12	75.0%
	Female	4	25.0%
Race	White	12	75.0%
	Black or African American	2	12.5%
	Multiracial	2	12.5%
Ethnicity	Hispanic/Latine	2	12.5%
	Non-Hispanic/Non-Latine	14	87.5%
Marital Status	Single, never married	6	37.5%
	Unmarried, living with a partner	2	12.5%
	Married, living with a spouse	4	25.0%
	Divorced	4	25.0%
Geographical Location	Northeast	8	50.0%
	Midwest	1	6.3%
	South	6	37.5%
	West	1	6.3%
Highest Level of Education	Some college, no degree	4	25.0%
	Associate degree (e.g. AA, AS)	2	12.5%
	Bachelor’s degree (e.g. BA, BS)	4	25.0%
	Master’s degree (e.g. MA, MS, MEd)	6	37.5%
Health Insurance	Insurance through a current or former employer or union	94	56.3%
	Medicare	4	25.0%
	Medicaid	2	12.5%
	None	1	6.3%
Total Personal Income	$10,000 - $20,000	1	63.0%
	$20,000 - $30,000	3	18.8%
	$30,000 - $50,000	6	37.5%
	$50,000 - $100,000	6	37.5%
Employment Status	Full-time employment	9	56.3%
	Part-time employment	1	6.3%
	On disability	1	6.3%
	Unemployed	3	18.8%
	Self-employed	2	12.5%

Table 2.

Deaf Demographics (n = 16)

Category	Variables	Value	Percent
Hearing Status	Moderate (40 -69 db)	3	18.8%
	Profound (90 - 120 db)	13	81.3%
Assistive Hearing Devices	Hearing aid(s)	7	43.8%
	Cochlear implant(s)	2	12.5%
	No hearing technology	7	43.8%
Deaf identity (self-described)	Deaf	9	56.3%
	deaf	5	31.3%
	bicultural	1	6.3%
	Deaf-blind	1	6.3%
Family Status	Hearing Family	11	68.8%
	Deaf Family	1	6.3%
	One or more Deaf family members	4	25.0%
Primary Language	English	4	25.0%
	ASL	12	75.0%
Primary Communication Method	ASL	15	93.8%
	Pidgin Signed English (PSE)	1	6.3%
Additional Disabilities	Visual Impairment	2	12.5%
	Mental Health	4	25.0%
	Chronic Illness	0	0.0%
	Physical Disability	0	0.0%
	None	10	62.5%

3.3. Procedures

The study procedures were approved by the University of Rochester Research Subjects Review Board.

3.3.1. Consent

Prior to completing the screening assessments, participants learned the research study’s purpose and the procedures for the screening assessments. The primary researcher also shared her background as a Deaf individual, her professional background, and her interests in conducting the study. Participants gave verbal consent to proceed with the screening assessment. Eligible participants then engaged in the written informed consent process. Participants met with the primary researcher on Zoom and reviewed the informed consent form on REDCap. The primary researcher reviewed each section of the form with the participants in ASL, clarifying points as needed, and checking for comprehension at the end of each section.

3.3.2. Screening Assessments

The screening assessments consisted of a demographics survey, alcohol use and mental health screening measures, and a treatment engagement survey. The primary researcher administered the measures in a private 1:1 session on Zoom. The primary researcher is Deaf and experienced in working with Deaf individuals with a variety of signing styles and language abilities. All participants self-reported ASL or PSE as their primary method of communication on the demographics survey. Prior to administering the screening measures, the primary researcher ensured mutual comprehension of signing styles and informed the participants that they could ask for clarification or adjustment of communication at any point if needed. The primary researcher presented the instructions and items of the screening assessments in written English via screen share and signed the instructions and items in ASL or PSE as requested or needed by the participants. This method is commonly used in clinical practice with Deaf clients. Participants provided their responses in ASL or PSE and the primary researcher recorded their responses in REDCap.

3.3.3. Interviews

The primary researcher interviewed participants in a private 1:1 session on Zoom. Each participant completed one interview lasting 1 – 2 hours. The interviews consisted of open-ended, semi-structured questions designed to elicit beliefs about the decision to seek alcohol-specific and/or mental health treatment using the framework of the TPB. The structured questions included asking about the advantages and disadvantages of seeking treatment to assess participants’ behavioral beliefs, asking who in their life would support or express opposition to participants seeking treatment to assess their normative beliefs, and what barriers or facilitators they have identified to seeking treatment to assess participants’ control beliefs. The complete list of questions used during the interviews is in the Appendix.

The primary researcher conducted interviews entirely in ASL or PSE and video recorded using Zoom. A nationally certified interpreter (NIC) viewed the video recordings, interpreted them into spoken English, and made audio recordings. The same interpreter was used throughout the entire study to ensure consistency. During the interpretation process, the interpreter would check in with the primary researcher if they needed clarification or had any questions. The research assistant then transcribed the audio recordings into written English and compared the transcripts to the original video recordings to ensure accuracy and completeness. The primary researcher also reviewed all of the written transcripts and compared them to the original video recordings for accuracy. Finally, the data analysis process (described below) used written transcripts alongside the videos allowing for an additional natural check of the accuracy of the interpretation. The study team made only minor edits to the transcripts (e.g., grammatical errors, correcting names of organizations or cities, etc.).

3.4. Measures

3.4.1. Alcohol Use Disorders Identification Test (AUDIT)

The 10-item AUDIT screened for alcohol consumption and alcohol-related symptoms and problems over the prior 12 months (Saunders et al., 1993). The study team calculated total scores by summing the scores across the items. The range of possible scores was 0 – 40, with higher scores indicating greater severity of alcohol use. For the current study, we considered scores of ≥16 as positive for possible AUD in need of professional treatment (Babor & Robaina, 2016). The Cronbach alpha for the current sample was .878.

3.4.2. National Survey on Drug Use and Health (NSDUH).

Three items from NSDUH (Center for Behavioral Health Statistics and Quality, 2015) assessed alcohol use in the past 30 days: (1) the number of days that alcohol was used (days drinking), (2) the usual number of drinks per drinking day (number of drinks per occasion), and (3) the number of days with 4/5 (for female/male, respectively) or more drinks on the same occasion (heavy episodes of drinking [HED]).

3.4.3. The Patient Health Questionnaire-9 (PHQ-9)

The PHQ-9, a self-report measure of depressive symptoms based on the DSM-IV criteria, assessed symptoms of depression (Kroenke et al., 2001). The study team calculated total scores by summing the scores across the items. The range of possible scores was 0 to 27, with higher scores indicating greater severity of depressive symptoms. Following the clinical guidelines, we considered scores of ≥10, reflecting moderate to severe levels of depressive symptoms as a positive screen for depression (Kroenke et al., 2001). The Cronbach alpha for the current sample was .833.

3.4.4. The General Anxiety Disorder 7-Item Scale (GAD-7)

The GAD-7, a self-rated, screening, diagnostic, and severity assessed symptoms of anxiety (Spitzer et al., 2006). The study team calculated total scores by summing the scores across the items. The range of possible scores was 0 to 21, with higher scores indicating more severe anxiety. Following the clinical guidelines, we considered scores of ≥ 10, reflecting moderate to severe levels of anxiety symptoms, as a positive screen for anxiety (Spitzer et al., 2006). The Cronbach alpha for the current sample was .874.

3.4.5. The PTSD Checklist for DSM-5 (PCL-5)

The PCL-5, a 20-item self-report measure that assesses the presence and severity of PTSD symptoms in the past month, assessed symptoms of PTSD (Weathers et al., 2013). The study team calculated total scores by summing the scores across the items. The range of possible scores was 0 – 80, with higher scores indicating more severe symptoms of PTSD. Following the clinical guidelines, we considered a score of ≥ 31 as a positive screen for PTSD as this score has been used to suggest a need for PTSD treatment (Blevins et al., 2015). The Cronbach alpha for the current sample was .935.

3.4.6. The Insomnia Severity Index (ISI)

The ISI, a 7-item self-report questionnaire that assesses the nature, severity, and impact of insomnia, assessed symptoms of sleep disturbance (Morin et al., 2011). The study team calculated total scores were calculated by summing the scores across the items. The range of possible scores was 0 – 28, with higher scores indicating more severe problems. Following the clinical guidelines, we considered scores of ≥15, reflecting moderate to severe levels of insomnia symptoms, as a positive screen for sleep disturbance in need of treatment (Morin et al., 2011). The Cronbach alpha for the current sample was .898.

3.4.7. Treatment Engagement

Screening items from the Alcohol Use Disorders and Associated Disabilities Interview (AUDADIS; Grant et al., 2011) assessed if participants had any history of professional alcohol-specific or mental health treatment. The study asked participants “Have you ever gone anywhere or seen anyone for a reason that was related in any way to your drinking/mental health?” (separate questions for alcohol and mental health treatment). The study also asked participants if they were currently engaged in any form of alcohol-specific or mental health treatment. The study did not code Alcoholics Anonymous (AA), self-help or support groups, emergency department visits (without follow-up care), or detoxification services (without follow-up treatment) as formal treatment experiences.

3.5. Data Analysis

The study analyzed the elicitation interviews using the Framework Method for the analysis of qualitative data (Gale et al., 2013). The original video recordings and the transcribed interview texts served as the basis for data analysis. The study coded interviews in groups and assessed for saturation of themes throughout the analysis process using the method developed by Guest et al., (2020). The first group served as the “base” and consisted of 4 interviews. Each subsequent group consisted of 3 interviews in which the first interview of the new group was the last interview of the previous group. There was a total of 6 groups (16 interviews). The study calculated saturation by comparing the number of new thematic categories in each group to the number of original thematic categories identified in the base. Saturation was determined to be reached when there were ≤5% of new thematic categories identified in a group. This study reached saturation after the third group, with only two new thematic categories added.

The primary researcher and the research assistant independently reviewed and coded the interviews in groups following five steps: familiarization, identifying a thematic framework, indexing, charting, mapping, and interpretation (Gale et al., 2013). Throughout each step, the study team considered criteria of frequency, extensiveness, specificity, emotions, and big picture (Krueger & Casey, 2000). First, the researcher and the assistant independently watched the videos of the interviews and read the transcripts and field notes to obtain an overall impression of the data. Next, they independently developed thematic categories (i.e., themes) for organizing the data under the overarching constructs of the TPB including behavioral (advantages vs. disadvantages), normative (support vs. opposition), and control beliefs (facilitators vs barriers). After the thematic categories were set, the researcher and the assistant separately sifted through the data, highlighted and sorted text to identify meaningful units (i.e., participant quotes), and made comparisons within and between cases. They lifted meaning units from the original context and re-arranged them under the thematic categories to produce a structured outline to serve as a descriptive overview of the participants’ experiences. After the completion of the independent data analysis for each group, the researcher and the assistant met to compare codes and mutually agree upon shared themes. The study team repeated this process for each of the groups. After all of the groups were analyzed, the researcher and the assistant interpreted the structured outline as a whole by identifying the relationships between the meaning units within each thematic category, summarizing the contents of each thematic category, and describing the relationships between thematic categories and the whole. The researcher and assistant edited and finalized meaning units and thematic categories based on these discussions.

4. Results

4.1. Descriptive Statistics

Descriptive statistics for the alcohol use and mental health screening assessments are in Table 3. As per the eligibility criteria, all of the participants scored in the clinical range for possible AUD with levels of alcohol consumption in the “harmful” and “possible dependence” categories. In addition, comorbid mental health problems were common among the participants. The mean scores for depression and anxiety symptoms were above the clinical ranges for moderate levels of symptoms, and the mean scores for symptoms of PTSD and insomnia were close to the clinical cut-offs.

Table 3.

Descriptive Statistics for Alcohol Use and Mental Health Screening Measures

Variable	Min – Max	Mean	SD
Alcohol Variables
AUDIT	16 – 32	22	5.6
Drinking days per month (NSDUH)	4 – 30	19.3	8.1
Drinks per drinking day (NSDUH)	0 – 10	4.5	2.7
Heavy episodic drinking days (NSDUH)	0 – 30	10.1	10.8
Mental Health Variables
Depression (PHQ-9)	4 - 22	12.4	5.9
Anxiety (GAD-7)	0 -19	10.1	5.1
PTSD (PCL-5)	2 - 64	29.4	19.2
Insomnia (ISI)	0 - 25	13.8	7.4

The identified themes organized by the TPB framework and the proportion of participants endorsing each theme are in Table 4. Behavioral beliefs were divided into perceived advantages and disadvantages of seeking treatment, normative beliefs were divided into perceived contacts that would support or oppose the participant’s treatment-seeking, and control beliefs were divided into facilitators and barriers to treatment-seeking. Subthemes will be described in the narrative below, but are not included in the table. Below we describe each of the main themes with example quotes from the participants. The example quotes all represent direct interpretations from ASL to written English.

Table 4.

Theory of Planned Behavior Themes

Themes	N (%)
Behavioral Beliefs
Advantages
Obtain Resources and Tools for Improvement	12 (75%)
Emotional Support	9 (56%)
Improve Health and Daily Functioning	7 (44%)
Avoidance of Consequences	2 (13%)
Disadvantages
Questionable Benefits of Treatment	14 (88%)
Negative Effects of Treatment	13 (81%)
Stigma	12 (75%)
Fear of Life Without Alcohol	11 (69%)
Waste of Resources	3 (19%)
Normative Beliefs
Support
Treatment Encouraged	15 (94%)
Opposition
Less Cultural Information About Treatment and Recovery in the Deaf Community	8 (50%)
Therapy not Widely Recommended in Marginalized Communities	5 (31%)
Control Beliefs
Facilitators
Acknowledgment of the Need for Treatment	15 (94%)
Access to Preferred Treatment Providers	15 (94%)
Deaf-friendly Environment	9 (56%)
Virtual Treatment	9 (56%)
Information and Resources	6 (38%)
Barriers
Lack of Culturally Competent Treatment Options	14 (88%)
Questionable Competency of Providers	14 (88%)
Small Community Dynamics	14 (88%)
Communication Barriers	13 (81%)
Unfamiliar with Treatment	13 (81%)
Myths about Alcohol Use and Treatment	12 (75%)
Limited Resources	12 (75%)
Problems with the Treatment System	10 (63%)

4.2. Behavioral Beliefs

4.2.1. Advantages of Treatment

The primary advantage endorsed by participants was that treatment would provide them with resources and tools for improvement. Many participants believed that they would learn strategies for engaging in self-reflection and they would gain new perspectives. Participants also believed that they would get information and physical resources that would help their recovery, including books, social support, and accessible AA meeting information. Other tools and resources identified included coping skills, medication, and accountability, believing that if they had somebody who would hold them accountable, they would be more successful.

Participant #006: “With alcohol treatment, I expect that they would probably help me see things a little differently, and see my drinking a little differently. I think there's probably some wisdom in that…And it puts me in a unique position where I can assess myself.”

More than half of the participants viewed treatment as a place where they would receive emotional support. For the participants, emotional support included direct empathy and encouragement from their provider or peers attending treatment, and relating to and learning from the stories of their peers. Participants also believed that going to treatment would improve their health and daily functioning. They reported expecting to see improvements in their physical, mental, and emotional health, as well as in their relationships with themselves and others. Finally, two participants reported that seeking treatment for their alcohol use would allow them to avoid negative consequences including legal trouble or losing their employment.

4.2.2. Disadvantages of Treatment

While participants saw several benefits to attending treatment, they also endorsed disadvantages including treatment having a negative effect on their lives and the lives of those around them, that treatment would not be successful, and concerns related to the stigma surrounding treatment. Many participants reported that treatment would require them to share and explore their emotions, which they perceived as distressing. The most common belief regarding the negative effects of treatment, however, was that attending treatment, especially with a hearing provider or treatment group, would increase their levels of stress and frustration. Participants reported that having to adapt to a hearing space while actively participating in recovery would be so overwhelming that they would return to drinking to deal with the stress.

Participant #005: “If I was going to have to be in a situation where I needed to be the one accommodating someone else, and I would have to be the one code-switching, I think that would put me under more stress, and I would be more distracted by that than actually focusing on my own problem and why I was there.”

They also believed that if they went to treatment, their family and/or friends would find out and it would damage their relationships, change their family/friends’ perception of them, or it would place an unfair emotional burden on their family/friends.

A great majority of participants questioned the benefits of attending treatment. They either believed that they were capable of self-managing their condition and therefore did not need to go to treatment, or that treatment would not be successful. The perceived ineffectiveness of treatment was mainly due to their perception that treatments developed for hearing individuals would not apply to their unique situation as Deaf individuals. In addition, the participants stated that there is a lack of effective relapse prevention resources due to short-term care models, further contributing to the ineffectiveness of treatment. Due to these beliefs, many participants regarded treatment as a waste of resources including time and money.

While not as prevalent as other beliefs, some participants were fearful of a life without alcohol. Several participants reported that they have been using alcohol as their primary coping mechanism to deal with the stressors in their lives. They described that they did not know how they would be able to cope with their struggles without the aid and comfort of alcohol. Additionally, a couple of participants described that if they went to treatment they would lose many of their social connections in the Deaf community. The participants described that the majority of Deaf events are held in bars or other avenues where alcohol is prevalent, and if they were in treatment and working on their sobriety, they would have a difficult time attending Deaf events. Also, the participants noted that because there is not much talk about AUD or recovery in the Deaf community, their friends who continue to drink alcohol would feel uncomfortable around them if they were sober and likely stop inviting them to social gatherings.

Stigma regarding treatment was another major disadvantage endorsed by many participants. They believed that attending treatment would cause them to be labeled as “crazy” or an “addict” by people in their lives including friends, acquaintances, coworkers, etc. Reasons for stigma included negative beliefs about people attending alcohol or mental health treatment such that there is something wrong with them, they are dangerous or should be feared, or that they are not able to function independently, and the idea that it is not “masculine” for men to attend treatment. Several participants stated that the stigma of treatment seems to be more prevalent in the Deaf community than in the hearing community and that the Deaf community appears to be less accepting of individuals attending treatment. This belief was magnified by statements that the Deaf community is a small and close-knit community, and that information travels quickly among community members. Several participants described that, because of this stigma, they feared that if they attended treatment there would be damage to their social or professional reputation in the Deaf community.

4.3. Normative Beliefs

4.3.1. Perceived Support of Treatment-Seeking

While several participants identified stigma as a disadvantage of treatment, almost all of the participants reported that the people in their lives would be supportive if they decided to seek treatment. Similarly, several participants mentioned that society, in general, has become increasingly accepting of treatment, especially among younger generations.

Participant #027: "Pretty much everybody, I guess. I mean, I could share that with a number of my friends, I don’t think that would be a problem."

4.3.2. Perceived Opposition to Treatment-Seeking

The participants’ beliefs about perceived opposition to seeking treatment revolved around beliefs regarding treatment in the Deaf communities and/or the Black community. They discussed that there is overall less talk of treatment in these communities than in the larger society and that members of these communities do not often recommend treatment due to their histories of oppression and negative experiences with the healthcare system. In addition, half of the participants reported that information about treatment and recovery was less prevalent in the Deaf community than in the hearing community, as one participant reported below.

Participant #015: "I think that hearing people know more people who have become sober than Deaf people do. Deaf people don’t necessarily know what to do with somebody who is looking to get sober or has become sober. You know, I don’t think that they have as much exposure to the idea of sobriety."

4.4. Control Beliefs

4.4.1. Facilitators of Treatment-Seeking

Two of the most common facilitators to treatment-seeking, which were reported by nearly all of the participants, were an acknowledgment of the need for treatment and access to preferred treatment providers. Several participants mentioned that they would not seek treatment until they recognized that they needed help and they saw the impact of alcohol on their lives. The participants described that they expected to “hit rock bottom”, experience serious health consequences, or lose their job as a sign that treatment is needed. Participants also reported that if important people in their lives actively encouraged them to attend treatment, they would be more likely to engage in treatment. This theme is exemplified by the quote below:

Participant #095: "I think there would need to be something that would knock me upside the head and wake me up. The fact that there isn’t anything like that happening is not really a motivator. I’m alone, I’m isolated, and there’s no real major event that has happened to wake me up. Maybe if I started having pain and I found out that my liver was in really bad shape that would be the wake-up call that I need."

The second theme that nearly every participant endorsed was access to preferred treatment providers. While a vast majority of participants stated they would seek treatment if the provider or treatment team were Deaf, several participants also stated that they would be more likely to seek treatment if the provider was hearing but had an awareness of Deaf issues and Deaf culture. Participants also described that they preferred to have some compatibility and similarity with their treatment provider or group members. Participants stated they wanted to know about their provider’s background and would feel more comfortable if the provider was open to sharing some information about themselves prior to beginning treatment. Many of the participants wanted to share a personal connection with their provider, with the most commonly reported similarity being that the provider has a history of AUD. Other similarities included having a provider of the same race/cultural background, of the same gender, and with a similar Deaf educational background, communication style, and perspective on Deaf issues including assistive hearing devices. Despite the desire for connection, the participants stressed the importance of not having a social connection with their providers. Many participants reported that they would be more likely to attend treatment if their provider had minimal connections with their community, such as a provider located outside of their city or state, or a hearing provider who would have fewer chances of being involved in the participant’s social circle.

Participant #041: "I don’t want to run into this person out in the world, you know what I mean? I don’t want them to be in the same circles that I am. I think I’d be really uncomfortable if it was somebody local, just because of my job."

Relatedly, many participants regarded virtual treatment as a facilitator. Several participants mentioned that virtual treatment would afford them more privacy as they would not have to see other members of the Deaf community on the way to, or in the waiting room of the provider’s office, and they would be able to see a provider in a more remote area outside of their social circles. Overall, they described that virtual treatment would offer them more options, would allow them flexibility in scheduling and attending treatment, would save them time, and would allow them to attend treatment in a private and comfortable space.

In addition to preferred providers, participants also reported being more likely to attend treatment if it was located within a Deaf-friendly environment. The participants’ descriptions of Deaf-friendly treatment environments included attending treatment within a city with a large Deaf cultural community where treatment providers may be more accustomed to working with Deaf individuals (e.g., Rochester, D.C., Austin, etc.), a treatment provider or treatment center that is familiar with and willing to provide appropriate accommodations (e.g., ASL interpreter, captions, etc.), a treatment provider who is fluent in ASL, or a specialized treatment program for Deaf individuals with staff fluent in ASL and Deaf peers also in recovery (e.g., Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals, Deaf Bridges to Recovery).

Finally, the participants reported that they would be more likely to seek treatment if they had more access to information and resources. They described that if they knew where to seek treatment and what treatment would entail from the intake process to the achievable outcomes, they would be more comfortable with the idea of going to treatment.

4.4.2. Barriers to Treatment-Seeking

The most commonly reported beliefs about treatment-seeking within the TPB were barriers to treatment, with a majority of participants endorsing each of the themes we identified in this category. One of the most common themes reported was the lack of culturally competent treatment options for Deaf individuals. In general, the participants discussed the lack of Deaf or signing treatment options, and participants who identified with multiple cultural groups reported that there is a lack of intersectionality within the treatment system. They also described that even if they found a treatment program where providers or group members used ASL, the program was located so far away that it was not an option for them. Moreover, because of the scarcity of culturally competent options, participants noted they would need to rely on an interpreter to communicate and reported that they felt uncomfortable expressing themselves in such a vulnerable environment through an interpreter.

Similarly, another common barrier reported was the questionable competency of providers. Participants believed that providers would not be knowledgeable about Deaf issues and Deaf culture and this lack of understanding would prevent quality care, especially as it could lead to misdiagnoses or impact the applicability of standard treatments. The participants believed that they would have to spend a significant amount of time educating their providers about Deaf issues and culture instead of getting the care they deserve. The participants described that because of this lack of understanding, they would not be able to connect with their hearing providers or peers in treatment, preventing them from fully engaging in their treatment.

Participant #001: "You know, and so here I am as a black Deaf woman, having to convince this hearing therapist who probably knows nothing about me, and about the cultures that I’m coming with, that they can provide help for me, and then I have to educate them on top of that in order to even to get to that starting point."

Interestingly, a few participants mentioned that they believed they would get lower-quality care from Deaf providers. Some believed that since there are so few Deaf providers, the available providers in their area may not specialize in their particular problem, while others felt that Deaf providers do not have the same quality of training and experience as hearing providers and would therefore provide them worse care. Additionally, some participants reported concerns that Deaf providers would not be able to remain neutral about sensitive topics or political issues within the Deaf community, and would therefore impose their bias on the participant during treatment.

Participant #005: "I mean and honestly, I'm not sure Deaf folk can be neutral. We all have our own trigger buttons, our own hot topics, and our own opinions about stuff…I’m concerned that would give them an opportunity to strong-arm their beliefs into my therapy."

Another of the most common barriers to treatment-seeking reported by participants was issues related to being a member of a small community. Many participants expressed that although they understand the provider, interpreter, and treatment team are bound by confidentiality, they still had fears that information about them attending treatment may not remain confidential. The participants described that because of the small size and interconnectedness of the Deaf community, any small slip could be easily identifiable. This uncertainty led many participants to the conclusion that attending treatment was too high of a risk for them.

Participant #044: "The Deaf world is incredibly small, everybody knows everybody. You have to be really careful when you’re picking and choosing the people that you want to trust, and I don’t have a whole lot of people that I trust fully."

In addition to confidentiality concerns, half of the participants mentioned concerns about multiple relationships with Deaf providers or interpreters. They explained that because of the size of the Deaf community, it is likely that they will already know the Deaf provider in their area as a friend, relative, co-worker, etc. In addition, several of the participants mentioned that they know most of the interpreters who work in their community as they use those same interpreters for their work, school, or community events. The discomfort of these potential multiple relationships presented a significant barrier to attending treatment.

Another common barrier to treatment-seeking was the expectation of communication barriers with hearing providers. The participants explained that they would have limited communication with their hearing providers or treatment teams, especially in an inpatient setting. Many believed, based on their past experiences as Deaf individuals, that they would not be provided with the appropriate accommodations that would allow for their engagement in treatment.

Participant #006: "If I request an interpreter and they say no, or if the interpreters aren’t available, or they won’t let the interpreters in. That kind of stuff, I see as barriers."

The participants also reported beliefs that even if they were provided with accommodations, they would not be of good quality to allow for their full participation in their treatment. Several participants expressed prior troubles with unqualified interpreters and problematic behaviors they have seen among interpreters. These experiences further contributed to their belief that communication is one of the largest barriers they will face when attending treatment.

Another common barrier was unique to the participants’ experiences as members of an oppressed group within the larger society. Half of the participants stated that they are hesitant to seek treatment for fear of the stereotyping, bias, and discrimination they will face as Deaf individuals. Due to their previous negative experiences, about one-third of participants expressed a general mistrust and fear of being involved in a treatment system designed for hearing individuals.

Participant #106: "And you can tell that they’re lying just in the way they say things, or how they behave, or the things that they’re dismissive about. It’s as if they're going through the motions but there’s nothing behind it. Like a checkbox on their list.”

The participants also reported barriers related to their understanding of treatment and the treatment process. Three-quarters of participants believed several myths about alcohol use and treatment that precluded their seeking treatment. The most common myth was that treatment for alcohol use was only intended for people with severe AUD who have experienced health, legal, or professional consequences. Other myths included the belief that they are “high-functioning” heavy drinkers and therefore do not need treatment, or that their drinking is entirely recreational and therefore does not necessitate treatment. Many participants also expressed unfamiliarity with treatment. This included limited knowledge of treatment options and the process of treatment itself. In addition, several participants reported difficulty finding information about treatment. Finally, the participants reported limited resources as a barrier to treatment-seeking. The majority of participants believed that they did not have the time or the money to attend treatment.

5. Discussion

Although 41% of the individuals screened for this study met the criteria for a possible AUD, only 18% of them were receiving counseling. Despite the severity of alcohol use, none of the individuals were receiving alcohol-specific treatment. In discussing their beliefs about treatment, the Deaf participants identified many similar beliefs from previous research with hearing individuals including the advantages of attending treatment, believing that they do not need treatment, stigma, and barriers to seeking treatment including concerns about time and money (SAMHSA, 2020; Grant, 1997; Saunders et al, 2006; Stecker et al., 2007; Stecker et al., 2012; Tucker et al., 2004; Rapp et al., 2006). However, the Deaf participants also reported several unique beliefs about treatment that reflected their cultural and linguistic contexts including specific disadvantages of treatment (e.g., treatment increasing their stress and making them worse, treatment not designed for Deaf individuals), additional stigma in the Deaf community, less access to treatment information in the Deaf community, and a multitude of additional barriers to seeking treatment. These unique beliefs are discussed below and are important to consider when attempting to address the low levels of treatment engagement among this population.

First, as expected, the Deaf participants reported more barriers to seeking treatment than hearing individuals including having limited information about treatment options, fears of stereotyping, discrimination, and other oppressive experiences within a hearing treatment system, barriers to communication with providers, and a lack of culturally competent treatment options. These barriers have previously been noted in the literature (Anderson et al., 2017; Fellinger et al., 2012; Guthmann & Blozis, 2001; Kuenburg et al., 2016; Sheppard, 2014). Relatedly, the Deaf participants reported concerns that if they were to attend treatment and interact with hearing providers the experience may further trigger the same communication stress and feelings of being misunderstood that led them to drink in the first place. They also reported doubts about the efficacy of treatment to meet their unique needs given that our current models of treatment were designed by and for hearing people. In fact, due to historical stigma and inaccessible recruitment, sampling, and data collection procedures, Deaf individuals have been systematically excluded from clinical research (Anderson et al., 2017). Accordingly, there are no evidence-based treatments for any behavioral health disorder among Deaf individuals.

There is a significant need to increase the number of Deaf and ASL fluent providers and train hearing providers in culturally appropriate methods of service delivery for Deaf individuals. The large majority of the Deaf participants reported that they would be more likely to attend treatment if they had access to their preferred providers. In addition, the participants reported that they would be more likely to attend treatment if they would receive the accommodations they need to allow their full participation. Unfortunately, Deaf individuals are often denied the accommodations they need to effectively participate in their own healthcare (Kuenburg et al., 2016; Sheppard, 2014). Thus, it is critical that treatment providers are trained in Deaf culture, mental health, relevant laws (e.g., the Americans with Disabilities Act), and the protocol for appropriate accommodation provisions (e.g., certified ASL interpreters, Deaf interpreters, Communication Access Real-Time Translation).

In addition, the Deaf participants who identified as racial or ethnic minorities stated that in their personal experiences, they have noted that members of culturally minoritized groups are less likely to discuss or suggest treatment due to their histories of oppression and negative experiences with the healthcare system. The participants described that members of culturally minoritized groups were hesitant to suggest treatment to members of their community because they believed it could be harmful. In general, Deaf individuals have significant histories of oppression within the healthcare system. For example, early literature in psychology labeled Deaf individuals as emotionally and cognitively deficient compared to their hearing peers, largely as a result of research employing improper assessments conducted by providers with little to no training in Deaf culture or ASL (Anderson et al., 2017; Glickman, 2013; Levine, 1977; Pollard, 1992). In the 19^th century, Deaf children were subjected to surgical and medical experiments in an attempt to find a cure for deafness (Lane, 2005). Even more recently, many Deaf adults recall experiencing frequent examinations and painful procedures as children in an attempt to identify the etiology or restore their hearing loss (Sheppard, 2014). Deaf individuals were also included as one of the “undesirable groups” in the eugenics movement of the 19^th century to be eliminated through selective breeding and at times, forced sterilization (Lane, 2005). The lasting impacts of the eugenics movement combined with advancing medical technologies to correct hearing loss have contributed to society’s negative perception of deafness as a disability rather than a cultural identity (McKee et al., 2013). Thus, many Deaf individuals continue to view medical interventions designed for hearing loss (e.g., audiometric testing, genetic counseling, surgery, etc.) as a means to eradicate the Deaf community (Lane, 2005), and Deaf adults continue to report frustration over medical professionals focusing on curing their hearing loss rather than addressing their reported concerns (Sheppard, 2014). Finally, Deaf adults have reported being subjected to medical procedures without their consent when providers neglect their communication needs (Sheppard, 2014). The history of oppression against Deaf individuals along with their continued negative experiences and barriers to accessing healthcare have fueled a general mistrust of the healthcare system (Anderson et al., 2017; Kuenberg et al., 2016). This mistrust may be especially prevalent among racially and ethnically minoritized Deaf individuals who also experience discrimination and oppression based on their racial or ethnic backgrounds. Thus, in addition to general training on Deaf culture, mental health, and accommodation provision, providers should receive training in intersectionality to improve service provision to this unique population. Trust may only be rebuilt through more positive healthcare interactions and experiences that may override the current negative framework. In addition, informational resources and support services should especially be targeted towards ethnically and racially diverse Deaf individuals. Accessible healthcare information and services, peer support, and open dialogue may begin to create the environment necessary to change the current narrative.

Related to building trust with providers, several of the Deaf participants mentioned that they would like the opportunity to have a meet and greet with providers prior to committing to professional services. They reported wanting to know about their provider’s personal and professional backgrounds and have some form of personal connection with their providers. Research has shown that therapists’ self-disclosure of personal information may aid the therapeutic process by facilitating the development of trust among culturally diverse clients (Chang & Berk, 2009; Constantine & Kwan, 2003; Sue & Sue, 2015). Past research with Deaf individuals has also noted a general preference for peer support as opposed to professional treatment as it allows for more open information sharing, connection, and empathy (Anderson et al., 2017). This model also aligns with the information-sharing cultural values of Deaf culture including directness, openness, transparency, and horizontal transmission of information among Deaf individuals (Edwards, 2005; Hauser et al., 2010). Increasing the visibility of providers serving the Deaf community and creating opportunities for Deaf individuals to connect with providers or peer support specialists could allow for the kinds of conversations that foster trust and would improve treatment-seeking among Deaf individuals.

In addition to training for providers, more resources and support could be provided for Deaf individuals seeking treatment. The Deaf participants reported having a difficult time finding accessible information about treatment options. There are a few outpatient and residential specialized substance use treatment centers (e.g., Deaf Addiction Services at Maryland, innesota Substance Use Disorder Treatment Program for Deaf and Hard of Hearing, Caring Works-Hope House), and several individual Deaf or ASL-fluent providers that are capable of providing culturally appropriate care to Deaf individuals. However, these resources are not listed in a centralized location (e.g., website or directory of treatment options for Deaf individuals) and are not always well-known to Deaf individuals seeking treatment, making it difficult to locate accessible treatment options. In addition, the availability of these resources depends on the Deaf individual’s residential location and insurance coverage. Ultimately, the need for treatment among Deaf individuals far outweighs the availability of specialized treatment resources. Thus, attempting to locate treatment options can require extensive research and problem-solving, which may be especially difficult for Deaf individuals who are already struggling with substance use or mental health problems.

The Deaf participants also reported that there is less cultural information sharing about AUD, treatment, and recovery in the Deaf community. The large majority of prevention and education materials surrounding AUD, mental health, and treatment are provided in written English (written above an 8^th-grade reading level) and therefore, are not broadly accessible to Deaf individuals (Davis et al., 1990; Guthmann & Blozis, 2001; Stossel et al., 2012). This, in combination with the lack of incidental learning (or contextual learning) that often comes from growing up as a Deaf individual in a hearing world, leads to less exposure to common information and knowledge of alcohol use, AUD, and recovery. This lack of information in turn leads to more misconceptions about AUD, fewer suggestions or encouragement to seek treatment, and less support for the recovery journey. While hearing individuals may easily find narratives of recovery and sober living, this information is not widely visible within the Deaf community, especially considering the fear of stigma. Therefore, it is critical that we develop informational resources to increase awareness and conversations about alcohol use and mental health within the Deaf community and provide support to Deaf individuals who may be interested in seeking treatment.

Increasing the number of resources and information about alcohol use, mental health, and treatment within the Deaf community may also aid in combating the effects of stigma. The Deaf participants reported that the effects of stigma were more prevalent within the Deaf community. They described that due to the small size of the community and the cultural norms of information sharing, often referred to as the “Deaf grapevine,” they had legitimate concerns about their reputation being damaged if they were to attend AUD treatment, especially if they were in high-level positions within the community. This is in line with previous literature which has discussed stigma as a major barrier to treatment in the Deaf community (Anderson et al., 2017; Guthmann & Blozis, 2001). The Deaf participants also reported concerns about treatment isolating them from their community. A well-known maxim in alcohol recovery is to substitute the “people, places, and things” that are associated with drinking habits with new people, places, and things that will assist with maintaining a sober lifestyle. However, the Deaf participants reported that doing so would isolate them from their community. While hearing people would have many accessible options to substitute, Deaf individuals would have a much more difficult time finding new accessible people, places, and things given the size of the Deaf community and their already highly limited options. Cultural information sharing, peer support, and resources could highlight the possibility of healthy recovery within the Deaf community. Deaf individuals who are considering seeking treatment would benefit from supportive services in which they could review their concerns and identify solutions to participate in treatment while maintaining connections within the Deaf community.

Also related to the small community dynamics, the participants reported concerns about multiple relationships in treatment due to knowing the Deaf providers or ASL interpreters in their area. The issue of multiple relationships between service providers and Deaf clients has been written about in the literature given the frequency of this occurrence in small communities (Guthmann, 2019; Smith, 2019). In addition to concerns about multiple relationships, the participants reported general concerns about having to use an ASL interpreter for treatment. They stated that they would feel uncomfortable in treatment and that it would be more difficult for them to develop a connection with the hearing provider when they had to rely on a third person to mediate the conversation. They described that they would have difficulty fully expressing themselves, especially when they are worried about the accuracy and quality of the interpretation. Increasing the number and availability of Deaf providers would combat many of these barriers. With more options available for direct services, Deaf individuals would have fewer concerns about interpreters and would be able to reduce the chances of encountering multiple relationships in treatment.

In addition to the more commonly reported barriers above, the Deaf participants also discussed a unique barrier that has not been explored in past literature. Some participants stated that they questioned the competency of Deaf providers. Although this barrier was less frequently reported, it is still important to consider. Deaf individuals encounter discrimination throughout their lives. The discrimination of Deaf individuals often is based on audism, or “the notion that one is superior based on one’s ability to hear or behave in a manner of someone who hears” (as cited in Bauman, 2004). Through repeated exposure to audism, Deaf individuals may internalize audist attitudes and project them onto other Deaf individuals, seeing them as less than their hearing counterparts, this is termed dysconcious audism (Gertz, 2003). It is possible that the Deaf participants’ beliefs about the inferiority of Deaf providers stem from dysconcious audism. Deaf providers and hearing providers require the same level of training and licensure to be able to provide mental health or substance use services. The number of Deaf providers has been growing recently, however, there has not been much visibility within the Deaf community. Increasing the exposure and visibility of Deaf providers, and providing psychoeducation about qualifications, licensure, and specializations could aid in combating the dysconcious audism that is likely driving the beliefs about the lower competency of Deaf providers.

Many of the Deaf participants discussed the benefits of virtual treatment. They described that virtual treatment would provide them with more options to see Deaf providers or hearing providers fluent in ASL as it would allow them to see providers in cities farther from their homes. Thus, virtual treatment appears to be another feasible option to combat some of the barriers faced by Deaf individuals seeking treatment. Virtual treatment would increase the availability of culturally appropriate outpatient treatment and reduce the chance of encountering multiple relationships with providers. The availability of virtual treatment services has risen dramatically since the COVID-19 pandemic as insurance companies approved the use of telehealth services. This has raised the number of available Deaf and ASL-fluent providers as Deaf individuals are able to see providers that would normally be inaccessible due to time, transportation, or geographical constraints (e.g., in a different city). In addition, there are several Deaf or ASL-interpreted self-help groups (e.g., Alcoholics Anonymous, Narcotics Anonymous), available through Zoom, providing convenient access to 12-step programs, sponsors, and peer support for Deaf individuals in recovery. Finally, several virtual Deaf mental health counseling services are available to provide individual counseling and support group meetings to Deaf individuals via Zoom (e.g., National Deaf Therapy, Deaf Counseling Center, My Deaf Therapy). However, these resources are not always well-known among individuals in the Deaf community. It is critical that we increase awareness of available services, uplift and spotlight Deaf and ASL-fluent providers, and provide support to Deaf individuals seeking treatment. While virtual treatment resources are great options for Deaf individuals seeking outpatient substance use or mental health treatment, they are not sufficient for individuals who may need a higher level of care, including inpatient or residential treatment services. Therefore, it is still critical to increase the number of Deaf providers, invest in the development of Deaf specialty treatment programs, and train hearing providers and substance use treatment programs in Deaf culture, mental health, relevant laws (e.g., the Americans with Disabilities Act), and appropriate accommodation provisions to ensure that Deaf individuals have more accessible treatment options.

5.1. Limitations

This study is the first, to the authors’ knowledge, to specifically explore Deaf individuals’ beliefs about seeking treatment for AUD. While the information gathered from this study provides valuable insights regarding treatment-seeking which may inform future interventions, the results must be interpreted in light of the limitations. First, the sample size was small. Even though our analysis reached saturation, it cannot be said that the results are generalizable to the larger Deaf community. This study focused specifically on Deaf adults who used ASL or PSE as their primary communication method and therefore does not include the wide variety of Deaf individuals who use other communication methods (e.g., spoken language, cued speech, Signing Exact English, etc.) who may have differing perspectives. Additionally, the majority of participants included in this study self-identified as White, non-Hispanic/Latine, male, and heterosexual. The limited diversity and small sample size may have limited the number of themes identified.

Second, this study was limited to Deaf adults who were not connected to treatment. Therefore, it is unknown how the beliefs identified in this study align with the actual treatment experiences of Deaf individuals. Also, this study did not identify the strategies that Deaf individuals may use to overcome the barriers they encounter to treatment-seeking. Future research could explore the experiences of Deaf individuals who successfully seek treatment to identify their perceptions of treatment and successful advocacy strategies for obtaining and engaging in treatment.

Finally, even though the interviews were conducted in ASL or PSE, the interviews were interpreted and analyzed in written English. Although they were checked for accuracy, there remains the possibility, albeit unlikely, that there was some information conveyed in the original interview that was lost in interpretation.

6. Conclusion

This study identified several cognitive factors that may influence a Deaf individual’s decision to seek treatment for their AUD. The Deaf participants reported many of the same beliefs that have been noted among hearing individuals that have been shown to predict treatment-seeking in previous research (Stecker et al., 2010). Some research has shown that these beliefs may be modified using Cognitive Behavioral Therapy (CBT) techniques to increase individual treatment-seeking behaviors (Stecker et al., 2012). Therefore, similar interventions may be beneficial to improve treatment-seeking among Deaf individuals. However, considering the unique cultural and linguistic factors that influence Deaf individuals’ beliefs about treatment and the greater barriers encountered by Deaf individuals, adaptations to interventions may be necessary to address the unique beliefs and barriers Deaf individuals encounter when seeking treatment.

In addition, this study identified a novel facilitator for Deaf individuals’ treatment-seeking, namely virtual treatment options. Virtual treatment options would address many of the Deaf individuals’ concerns and barriers including increasing privacy, the availability of Deaf or ASL-fluent providers, reducing the risk of multiple relationships with providers, and reducing the need for interpreters.

Highlights.

• Deaf adults have higher rates of alcohol use disorder.

• Deaf adults are less likely to seek treatment for alcohol use disorder.

• Deaf adults have unique cultural beliefs about seeking treatment.

• Deaf adults experience more barriers when seeking treatment.

• Interventions that consider these cultural factors can increase rates of treatment engagement.

Appendix

Demographic Survey

Age:___________________________.

What is your hearing status?

• Hearing

• Mild (10 – 39 db)

• Moderate (40 – 69 db)

• Severe (70 – 80 db)

• Profound (90 – 120 db)

• I don’t know

What is your primary language?

• English

• ASL

• Spanish

• Other:____________________________________________.

What do you consider to be your primary communication method?

• Spoken English

• Written English

• American Sign Language (ASL)

• Pidgin Signed English (PSE)

• Total Communication (TC)/Simultaneous Communication (SImCom)

• Signing Exact English (SEE1, SEE2, etc.)

• Tactile sign language

• Cued speech

• Other communication method:___________________________.

Gender:

• Male

• Female

• Nonbinary

• Transgender

• Prefer to self-describe:___________________________.

Race:

• White

• Black or African American

• Asian or Pacific Islander

• Native American or Alaskan Native

• Middle Eastern

• Multiracial:____________________________________________.

Are you Hispanic/Latinx?

• Yes

• No

Which label do you most often use to describe yourself?

• Deaf

• deaf

• hard-of-hearing

• hearing impaired

• hearing

• bicultural

• Deaf-blind

• Self-describe:___________________________.

Family hearing status: (chose all that apply)

• I am the only deaf person

• Everyone in my immediate family (i.e. mother, father, all siblings)

• My mother is deaf

• My father is deaf

• I have one or more deaf siblings

Do you use any assistive hearing technology?

• Hearing aid(s)

• Cochlear implant(s)

• Other

• None

Do you have any additional disabilities?

• None

• Visual impairment

• Physical disability

• Chronic illness

• Mental health

• Other

Marital Status:

• Single, never married

• Unmarried, living with a partner

• Married, living with spouse

• Married, not living with spouse

• Separated

• Divorced

• Widowed

Which geographical region do you currently live in?

• Northeast

• Midwest

• South

• West

What is your highest level of education achieved?

• Less than a high school diploma

• High school diploma or equivalent (e.g. GED0

• Some college, no degree

• Associate degree (e.g. AA, AS)

• Bachelor’s degree (e.g. BA, BS)

• Master’s degree (e.g. MA, MS, MEd)

• Doctoral degree (e.g. PhD, MD, PsyD, EdD, etc.)

Employment status in past 30 days:

• Full time employment

• Part time employment

• Retired

• On disability

• Unemployed

• Homemaker

• Self-employed

Best estimate of your total personal income last year before taxes including wages, disability, pensions, and interest or dividends on savings and investments.

• Less than $5,000

• Between $5,000 and $10,000

• Between $10,000 and $20,000

• Between $20,000 and $30,000

• Between $30,000 and $50,000

• Between $50,000 and $100,000

• Over $100,000

Do you currently have health insurance?

• Insurance through current or former employer or union (yours or that of a family member)

• Insurance purchased directly from an insurance company

• Medicare

• Medicaid

• TRICARE or other military health care

• Veterans Affairs (enrolled for VA healthcare)

• Indian Health Service

• Other:___________________________.

Treatment Use Screening

1. Have you ever gone anywhere or seen anyone for a reason that was related in any way to your drinking – a physician, counselor, Alcoholics Anonymous, or any other community agency or professional?

           □ Yes            □ No

2. What kind of help did you receive for your drinking?

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

3. Are you currently going anywhere or seeing anyone for a reason that is related in any way to your drinking?

           □ Yes            □ No

4. What kind of help are you receiving for your drinking? *

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   *Subject is ineligible unless current care is limited to only the following categories:

   • Alcoholics Anonymous or other non-professional mutual help group
   • Alcohol or drug detoxification ward or clinic if detox only
   • Emergency Department

5. Have you ever gone anywhere or seen anyone for a reason that was related in any way to your mental health – a physician, counselor, self-help group, or any other community agency or professional?

           □ Yes            □ No

6. What kind of help did you receive for your mental health?

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

7. Are you currently going anywhere or seeing anyone for a reason that is related in any way to your mental health?

           □ Yes            □ No

8. What kind of help are you receiving for your mental health?*

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   ___________________________________________________________________________

   *Subject is ineligible unless prior care is limited to only the following categories:

   • Non-professional mutual help group
   • Emergency Department crisis hotline or centers
   • Primary care physician for meds only

Interview Questions

1. We are interested in the beliefs Deaf individuals have about treatment for alcohol use and mental health problems, if you consider seeking treatment for some of the symptoms you noted during the screening assessment what would you consider to be the advantages of seeking treatment?

   1. What do you think you could benefit from treatment?
   2. What are the “pros” to seeking treatment?
   3. How do the cultural stressors you experience as a Deaf individual impact your thoughts about the advantages of treatment?
2. Now what would you consider to be some of the disadvantages to seeking treatment?

   1. What are some of the “cons” to seeking treatment?
   2. Would treatment negatively impact your life in some way?
   3. How do the cultural stressors you experience as a Deaf individual impact your thoughts about the disadvantages of treatment?
3. If you think about the people in your life, who would support you seeking treatment?

   1. How would they be supportive?
   2. Do you have different experiences of support for seeking treatment from the Deaf and Hearing communities?
4. Who would be opposed to you seeking treatment?

   1. What would they do?
   2. Do you have different experiences of opposition for seeking treatment from the Deaf and Hearing communities?
5. If you were to try to get treatment, what barriers would you face?

   1. What would make it difficult to get treatment?
   2. Are there any unique cultural barriers to seeking treatment within the Hearing or Deaf communities?
   3. When you are experiencing the cultural stressors as a Deaf individual, do you feel that you are more or less likely to seek treatment?
6. What facilitators are in place for you to seek treatment?

   1. What might help you seek treatment?
   2. What might make it easier for you to get treatment?
   3. Are there any unique cultural barriers facilitators to seeking treatment within the Hearing or Deaf communities?
7. Suppose you decided to get treatment, what kind of treatment would you look for?

   1. Do you know where you might decide to go?
   2. What would you want to focus on in treatment?
   3. Would the cultural stressors you face as a Deaf individual impact where you chose to seek treatment?

Data statement:

This study was not preregistered. All de-identified data for this study (i.e., screening assessment data and the deidentified transcripts of the interviews) is available upon request by emailing the corresponding author.