Lancet Commission on Hearing Loss: d/Deaf and Hard of Hearing Stigma Measurement Tools

TL;DR

This paper introduces new tools to measure stigma faced by deaf and hard of hearing people and their support networks, aiming to improve understanding and reduce stigma in healthcare and society.

Contribution

The paper presents novel, validated stigma measurement tools tailored for d/DHH individuals, care partners, parents, and healthcare providers.

Findings

New tools were developed and validated for measuring various types of stigma in d/DHH populations and their support systems.

Tools were tested in both high-income (U.S.) and low-middle income (Ghana) countries to ensure broad applicability.

The tools include scales for experienced, perceived, internalized, and anticipated stigma across multiple stakeholder groups.

Abstract

The Lancet Commission on Hearing Loss Measures, Models, and Reduction of Stigma Subgroup aims to advance understanding of d/Deaf or hard of hearing (d/DHH) stigma and actions to address it. We identified a lack of tools to measure the different types of stigma faced by d/DHH people and their close associates. Here, we describe the development and preliminary validation of novel d/DHH stigma measurement tools. We used a multistep exploratory sequential design: survey development, modified Delphi process, cognitive interviewing, and pretesting. Psychometric validation occurred in the U.S. (high-income country) and Ghana (low-middle income country). Stigma measurement tools were developed for 1) d/DHH individuals (experienced, perceived, internalized, anticipated hearing device-related stigma [HDRS]); 2) care partners of d/DHH adults (observed and perceived stigma toward d/DHH people; care partners’ internalized, experienced, perceived stigma; perceived HDRS); 3) parents of d/DHH children (parental observations and perceptions of stigma; parental secondary experienced, perceived, internalized stigma; perceived HDRS); and 4) health care providers (HCPs) (perceived and enacted stigma; secondhand patient-experienced stigma; secondhand patient-perceived stigma; perceived HDRS). Additional ageism scales measure d/DHH peoples’ experienced ageism and observed ageism among care partners, HCPs, and the general population. These tools, available in Ear and Hearing, fill a critical gap in d/DHH stigma measurement. Ongoing research using these tools will enable monitoring of d/DHH stigma, refinement of interventions, and assessment of societal attitudes toward d/DHH people. Leveraging these tools in clinical and public health settings can help reduce stigma, improve patient experiences, and lead to better overall outcomes in hearing healthcare.