A Culturally & Linguistically Specific Web-based Deaf Depression Screener: Validity & Reliability Elizabeth Eckhardt, LCSW, PhD , Marjorie F. Goldstein, PhD , Patrice Creamer, MSW , Roberta S. Berry, MFA  APHA Annual Meeting, Chicago- Nov 3, 2015 Deaf Research Projects, Social Sciences Innovations Corp, 71 West 23rd St, 4h floor, New York, NY 10010. Funded by NIMH Grant Phase I - 1R43MH085370 Funded by NCATS Grant Phase II - 1R44TR000345

BACKGROUND Deaf populations who use American Sign Language (ASL) as their main mode of communication are an underserved, low literacy group. This slide should be title BACKGROUND

Prior Deaf Research Computer delivered questionnaires and curricula on health topics by our research team: Drug and alcohol use General mental health HIV knowledge and risk in deaf adults HIV knowledge and risk in deaf adolescents Curricula for high school students

Why a deaf-specific depression screener? Depression is among the most common mental health problems seen in the US. Depression is at least as common in deaf as hearing persons. Depression is commonly diagnosed and treated in Primary Care settings. Diagnoses are typically done using written screeners. Deaf persons are not routinely screened for depression in Primary Care.

Deaf persons cannot be easily screened using written screeners: Low literacy among deaf populations. Average reading level is 4-5th grade in deaf HS grads. ASL is a separate language with a syntax and grammar unlike English. ASL has no written form. Many MH idioms are unfamiliar to deaf signers. Confidentiality may be an issue with an interpreter. No good way to standardize questions in ASL.

Deafness as a Culture For many prelingually deaf persons, deafness is not seen as a disability. Deaf persons who use ASL often see themselves as part of Deaf Culture with different cultural norms – akin to an ethnic minority group. History of poor treatment and misunderstanding by the mental health care system.

Deaf Depression Screener Development Phases SBIR funding received in two phases. Phase I: Feasibility of developing, and testing of prototype Deaf Depression Screener. Phase II: Full development and testing of the Deaf Depression Screener.

Phase I Prototype Development Aims: Qualitative research to explore how deaf persons experience and express depression. Does deaf experience align with DSM criteria for depression? Prototype of a self-administered, web-delivered depression screener in American Sign Language that is culturally specific.

DSM-IV Depression Symptoms Depressed mood Lack of concentration/indecisiveness Thoughts of death/suicidal ideation Fatigue/loss of energy Loss of interest/pleasure Psychomotor agitation/retardation Insomnia/Hypersomnia Weight gain/loss Low self worth/guilt

DSM-IV Depression Criteria Is symptom present for prior 2 weeks? Does it interfere with usual life activities and functioning? Are 5 out of 9 symptoms endorsed and meet the above 2 conditions?

Phase I Qualitative Methods Focus Groups (FGs) Deaf persons receiving MH services Deaf persons not receiving MH services How do they experience and express symptoms of depression? 3. Signing MH providers How do their patients describe DSM and/or additional symptoms?

In-depth Interviews Signing Psychiatrist How is depression diagnosed, how do patients describe DSM and/or additional symptoms. 2. MH Interpreter How are DSM criteria for depression interpreted between ASL and English?

Qualitative Data Analysis Transcription of Focus Groups and Interviews. Analyzed for themes and Signs for symptoms. Marge check report for more findings?

Findings Anger as a commonly reported symptom of depression. Several variations of Signs found to represent specific depressive symptoms. Difficult to translate time periods into ASL. ’Guilt’ is associated with the law, should use a different sign (e.g. self blame) and add examples.

Translation of Items Translation team of deaf and hearing signing MH professionals Development of English script for translation Complex criteria were divided into two items Translation and video recording of several versions of each item in ASL. Video recorded items shown to FGs of deaf MH patients

Creation of Prototype Screener Each depression symptom was signed with response options : ‘always’, ‘sometimes’ or ‘never’ within the previous 2 weeks. For those answering ‘always’ or ‘sometimes’, a follow up severity item asked if this interfered with their usual functioning ‘a lot’, ‘somewhat’ or ‘not at all’. English captions were available for all items. Did we have the calendar for the prototype, any other graphics

Prototype Testing and Results 35 deaf mental health patients were recruited from 2 mental health programs. A chart diagnosis was available for all patients. 72 deaf persons recruited from general population. Time period of ‘the past 2 weeks’ was not understood. Some participants answered ‘sometimes’ to a symptom, but then indicated that it bothered them ‘not at all’.

Additional Focus Groups Separate FGs were held with the general and mental health samples to try to understand the findings. Some participants were unable to understand the difference between transient and truly bothersome symptoms. The period ‘past 2 weeks’ did not translate well into ASL. Participants requested a visual (calendar) representation.

Phase II Study Obtained Phase II funding to refine the Deaf Depression Screener and bring it to acceptable levels of validity and reliability.

Features of Deaf Depression Screener Deaf Depression Screener nearing completion for web-based delivery and scoring. Calendar Graphic included. Introduction with explanation of transient vs. bothersome symptoms. Validity and reliability testing conducted. Show Demo here

Demo of Deaf Depression Screener

Validity Testing Recruitment of 247 participants. Screener results compared to clinical exam (‘gold standard’). Clinical exam by deaf mental health clinician via tele-mental health. Line up numbers (1,2,3)

Reliability Testing Additional 115 subjects recruited for test re-test. Correlation coefficient calculated between Time 1 and Time 2 tests. Maybe remove since you detail findings later?

Participant Demographics Total 362 Deaf Participants Age: Mean: 46.7 years (range 19-82) Male: 43% Female: 57% Black: 25% White: 34% Hispanic: 30% Asian: 4% Mixed Races: 4% Others: 2% High School Grad: 44% College +: 18%

Results: Validity Sensitivity: True Positive Rate = 85% Compared to the Signing Clinician, how accurate is the Deaf Depression Screener in detecting true cases of depression? Specificity: True Negative Rate = 70% Compared to the Signing Clinician, how accurate is the Deaf Depression Screener in detecting people who are not depressed?

Results: Reliability Test Retest Reliability = .87 How accurate is the Deaf Depression Screener in obtaining the same result twice? Internal Consistency Reliability = .86 How well do the items asked inter-correlate (i.e. measure the same construct)?

Conclusion When finalized, the Web-based Deaf Depression Screener will be available to health care providers who serve deaf patients for single use or unlimited subscription. Through accurate depression screening, deaf individuals will gain access to mental health treatment and/or referral from primary care, emergency rooms, and deaf services agencies.

Phase II Online Deaf Depression Screener

Lack of Interest Question Severity Follow up Question

Contact Information Social Science Innovations Corp. Elizabeth Eckhardt, LCSW, PhD, Principal Investigator Marjorie Goldstein, MPH, PhD, CHES, Co-Investigator eckhardt@ssicproducts.com goldstein@ssicproducts.com www.ssicproducts.com 212.845.4451 voice telephone 646.350.2726 videophone 212.845.4610 fax