Preliminary Validation of Stigma Measures Among Parents of Children Who Are d/Deaf or Hard of Hearing in the United States and Ghana.

OBJECTIVES: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child's special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child's life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. DESIGN: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. RESULTS: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. CONCLUSIONS: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.

Development of Measures for d/Deaf and Hard of Hearing Stigma: Introduction to the Special Supplement on Stigma Measurement Tools.

People who are d/Deaf or hard of hearing (d/DHH) often experience stigma and discrimination in their daily lives. Qualitative research describing their lived experiences has provided useful, in-depth insights into the pervasiveness of stigma. Quantitative measures could facilitate further investigation of the scope of this phenomenon. Thus, under the auspices of the Lancet Commission on Hearing Loss, we developed and preliminarily validated survey measures of different types of stigma related to d/Deafness and hearing loss in the United States (a high-income country) and Ghana (a lower-middle income country). In this introductory article, we first present working definitions of the different types of stigma; an overview of what is known about stigma in the context of hearing loss; and the motivation underlying the development of measures that capture different types of stigma from the perspectives of different key groups. We then describe the mixed-methods exploratory sequential approach used to develop the stigma measures for several key groups: people who are d/DHH, parents of children who are d/DHH, care partners of people who are d/DHH, healthcare providers, and the general population. The subsequent manuscripts in this special supplement of Ear and Hearing describe the psychometric validation of the various stigma scales developed using these methods.

Preliminary Validation of Measures of Experienced, Perceived, and Internalized Stigma Among Adults Who Are d/Deaf or Hard of Hearing in the United States and Ghana.

OBJECTIVES: In this article, we examine the psychometric performance of 3 scales measuring experienced, perceived, and internalized d/Deaf or hard of hearing (d/DHH) stigma among adult (18 and older) populations of individuals who are d/DHH, including those who have been d/DHH since before they developed language (lifelong) and those who became d/DHH after they developed language (acquired) in the United States and Ghana. DESIGN: The preliminary validation study took place in the Greater Accra and Eastern regions of Ghana and across the United States. In the United States, all data were collected online via self-administered surveys in English. In Ghana, trained interviewers who are d/DHH and fluent in Ghanaian Sign Language conducted interviews with participants who are lifelong d/DHH using a video survey. Ghanaian participants with acquired d/DHH status were surveyed by trained hearing interviewers. We calculated polychoric correlation matrices between the measures to remove redundant and unrelated items and used exploratory factor analysis to create the final scales. We also tested the association between the factor scores and a simple summing method for calculating the scale. RESULTS: The study sample included people who have been d/DHH since before they developed language (Ghana: n = 171, United States n = 100) and people who became d/DHH after they developed language (Ghana: n = 174, United States: n = 219). The final experienced, perceived, and internalized scales included six, seven, and five items, respectively. All three scales performed well as unidimensional measures across all four samples. Across the four samples, the experienced, perceived, and internalized stigma scales yielded ordinal αs ranging from 0.725 to 0.947, 0.856 to 0.935, and 0.856 to 0.935, respectively. It would be acceptable to operationalize all stigma scales as sum-of-item scores. CONCLUSIONS: The scales performed well and appear to provide a valid means of measuring different types of stigma among diverse groups of people who are d/DHH. Future work should refine and validate these scales in additional contexts.

Development and Preliminary Validation of Stigma Measures for Care Partners of Persons Who Are d/Deaf or Hard of Hearing.

OBJECTIVES: A great deal of literature documents the significant demands, both physical and psychosocial, that care partners experience when providing care to persons with a range of health conditions. There is, however, far less research available on care partners of adult persons who are d/Deaf or hard of hearing (d/DHH). In response to this gap, the authors developed measures of d/DHH stigma among care partners as part of the work of the Lancet Commission on Hearing Loss' Measures, Models, and Stigma Reduction Subgroup. The measures examined in this article are part of a larger set of parallel measures to enable comparison of stigma measurement across groups. DESIGN: The present study describes the preliminary validation of five stigma scales specifically tailored for use to assess the prevalence and effect of stigma on the care partners of adult people who are d/DHH in the United States. Care partners in this context are defined broadly and can include spouses, partners, adult children, siblings, and friends of persons who are d/DHH. The scales describe the care partner's own assessment of how the person who is d/DHH experiences and perceives stigma as well as the care partner's own internalized, experienced, and perceived stigma as a result of their association with a person who is d/DHH. This latter set of three scales describes secondary stigma, or the stigma a person experiences related to their association with a member of a stigmatized group. Measures were developed through a process that included a literature review, Delphi groups with people who became d/DHH after they developed spoken language, cognitive interviews, and a pretest. An online, self-administered preliminary validation survey was conducted with 151 care partners. RESULTS: Results support the internal reliability of each of the five stigma scales (ordinal α's all greater than 0.9) and that each scale is assessing a single factor. CONCLUSIONS: Additional testing is needed to confirm the validity of these measures. After further validation, they can be used to assess the prevalence and effect of stigma on care partners of persons who are d/DHH and to evaluate the success of interventions developed to address stigma and its effects both on the care partner and the person who is d/DHH and receiving the care.

Preliminary Validation of Hearing Device-Related Stigma Measures in Four United States Populations.

OBJECTIVES: Although hearing devices such as cochlear implants and hearing aids often improve communication, many people who are d/Deaf or hard of hearing (d/DHH) choose not to use them. Hearing device-related stigma, or negative societal beliefs about people who use hearing devices, often drives this decision. Although much research has documented the negative effects of hearing device-related stigma, no widely accepted, validated measure to quantify such stigma across populations currently exists. In this article, we describe the preliminary validation of four distinct but related scales measuring hearing device-related stigma in different populations, including people who use hearing devices and those close to them. DESIGN: We preliminarily validated four measures for quantifying hearing device-related stigma in different populations that were previously developed and refined through a literature review, Delphi interviews, cognitive interviews, and a pretest. We preliminarily validated these measures through self-administered online surveys in a convenience sample in the United States. Among participants who use a hearing device and who either (a) self-identified as being d/DHH before they developed language (lifelong; n = 78) or (b) those who self-identified as having acquired a d/DHH identity after they developed language (acquired n = 71), we validated an anticipated hearing device-related stigma scale (d/DHHS-LE-HDA). We validated three scales that measure perceived hearing device-related stigma observed by parents of children who are d/DHH and who use a hearing device (n = 79) (d/DHHS-P-HDPO), care partners of adults who are d/DHH and use a hearing device (n = 108) (d/DHHS-CP-HDPO), and health care providers (n = 203) (d/DHHS-HCP-HDSH). Exploratory factor analysis assessed the reliability of each measure. RESULTS: Each of the four scales loaded onto one factor. Factor loadings for the eight-item scale measuring anticipated hearing device-related stigma among the two populations with lived experience ranged from 0.635 to 0.910, with an ordinal α of 0.93 in the lifelong d/DHH participants and 0.94 among the acquired d/DHH participants. The six-item scale of perceived stigma observed by parents had item loadings from 0.630 to 0.920 (α = 0.91). The nine-item scale of hearing device-related stigma observed by care partners had item loadings from 0.554 to 0.922 (α = 0.95). The eight-item scale of hearing device-related stigma reported by health care providers had item loadings from 0.647 to 0.941 (α = 0.89). CONCLUSIONS: Preliminary validation results show that the four stigma measures perform well in their respective populations. The anticipated stigma scale performed similarly well for both lifelong d/DHH and acquired d/DHH, which suggests that it could perform well in different contexts. Future research should further validate the scales described here as well as measure hearing device-related stigma in different populations-including people who live in different geographic regions and people using different kinds of hearing devices-and evaluate the success of interventions developed to reduce hearing device-related stigma.

Research Agenda and Applications for Preliminarily Validated Measures of d/Deaf and Hard of Hearing Stigma.

In this special supplement of Ear and Hearing, we have presented preliminarily validated measures for stigma related to being d/Deaf or hard of hearing (d/DHH) in the United States and Ghana. In this concluding article, we suggest avenues for the future refinement and use of these measures. First, the measures should be further validated. Second, they should be used to assess the current state of d/DHH stigma and the importance of different kinds of stigma in different populations, which should in turn drive the development of interventions to reduce d/DHH stigma. Third, these measures can assist in evaluating the effectiveness and cost-effectiveness of those interventions. The evidence from this work can then inform investment cases and cost-of-condition studies, which will support advocacy efforts and policy development for reducing stigma and improving the lives of people who are d/DHH.

Cochlear Implantation in Single-Sided Deafness and Asymmetric Hearing Loss: 12 Months Follow-up Results of a European Multicenter Evaluation.

People with single-sided deafness (SSD) or asymmetric hearing loss (AHL) have particular difficulty understanding speech in noisy listening situations and in sound localization. The objective of this multicenter study is to evaluate the effect of a cochlear implant (CI) in adults with single-sided deafness (SSD) or asymmetric hearing loss (AHL), particularly regarding sound localization and speech intelligibility with additional interest in electric-acoustic pitch matching. A prospective longitudinal study at 7 European tertiary referral centers was conducted including 19 SSD and 16 AHL subjects undergoing cochlear implantation. Sound localization accuracy was investigated in terms of root mean square error and signed bias before and after implantation. Speech recognition in quiet and speech reception thresholds in noise for several spatial configurations were assessed preoperatively and at several post-activation time points. Pitch perception with CI was tracked using pitch matching. Data up to 12 months post activation were collected. In both SSD and AHL subjects, CI significantly improved sound localization for sound sources on the implant side, and thus overall sound localization. Speech recognition in quiet with the implant ear improved significantly. In noise, a significant head shadow effect was found for SSD subjects only. However, the evaluation of AHL subjects was limited by the small sample size. No uniform development of pitch perception with the implant ear was observed. The benefits shown in this study confirm and expand the existing body of evidence for the effectiveness of CI in SSD and AHL. Particularly, improved localization was shown to result from increased localization accuracy on the implant side.

Duration of cochlear implant use in children with prelingual single-sided deafness is a predictor of word perception in the CI ear.

As part of a longitudinal study regarding the benefit of early cochlear implantation for children with single-sided deafness, the current work explored the children's daily device use, potential barriers to full-time device use, and the children's ability to understand speech with the cochlear implant (CI). Data were collected from 20 children with prelingual SSD who received a CI before the age of 2.5 years, from the initial activation of the sound processor until the children were 4.8 to 11.0 years old. Daily device use was extracted from the CI's data logging, while word perception in quiet was assessed using direct audio input to the children's sound processor. The children's caregivers completed a questionnaire about habits, motivations, and barriers to device use. The children with SSD and a CI used their device on average 8.3 h per day, corresponding to 63 % of their time spent awake. All children except one could understand speech through the CI, with an average score of 59 % on a closed-set test and 73 % on an open-set test. More device use was associated with higher speech perception scores. Parents were happy with their decision to pursue a CI for their child. Certain habits, like taking off the sound processor during illness, were associated with lower device use. Providing timely counselling to the children's parents, focused on SSD-specific challenges, may be helpful to improve daily device use in these children.

How to Improve Grit Among Deaf or Hard of Hearing Students: The Effect of Thinking Style.

The researchers examined the associations between thinking styles and grit. A cross-sectional design was adopted, with two weeks of data collection. The Thinking Styles Inventory-Revised II and the Grit Scale were administered to 365 signing deaf or hard-of-hearing (DHH) Arts and Design students and 443 hearing university students in mainland China. CFA, MANOVA, hierarchical multiple regression analyses, and a multi-group analysis were executed for data analysis. DHH and hearing students with Type I styles (i.e., more creativity-generating, less structured, and cognitively more complex) had higher grit levels, with large effect sizes for the identified relationships. There were no differences in the relations for either group. The associations between thinking styles and grit may protect against psychological pressure and rehabilitation problems and enable university/school administrators, counselors, social workers, teachers, parents, and students to enhance the grit of students who are deaf or hard of hearing.

"Where I Didn't Have to Hear Anything, and I Could Just Run": The Lived Sport Experiences of Deaf or Hard of Hearing Collegiate Athletes.

Accessible and inclusive participation in sport can provide significant physical, psychological, and social benefits to Deaf or hard of hearing (D/HH) athletes. To understand how to facilitate these benefits, the researchers explored the lived physical education and sport experiences of D/HH collegiate athletes. Six athletes representing six sports were recruited and interviewed. Utilizing an interpretative phenomenological analysis approach to guide data collection, analysis, and interpretation, the researchers found five major themes: Self-Advocating for Awareness, Finding Meaningful Conversations, Overcoming Challenges, Seeking Community Connection, and Escaping Through Physical Activity. These themes illustrate the influence of accessibility and inclusion on the participants' sport experiences as well as the impact of the disability awareness of their coaches and peers. D/HH athletes and their coaches and teammates should work to overcome barriers to accessibility and inclusion to ensure the maximum benefit of being on a college sports team.

Adaptive Strategies of Single-Sided Deaf Cochlear-Implant Users Revealed Through Resting State Activity: an Auditory PET Brain Imaging Study.

Brain plasticity refers to the brain's ability to reorganize its structure or function in response to experiences, learning, and environmental influences. This phenomenon is particularly significant in individuals with deafness, as the brain adapts to compensate for the lack of auditory stimulation. The aim of this study is to investigate whether cochlear implantation can restore a normal pattern of brain activation following auditory stimulation in cases of asymmetric hearing loss. We used a PET-scan technique to assess brain activity after cochlear implantation, specifically during an auditory voice/non-voice discrimination task. The results indicated a nearly normal pattern of brain activity during the auditory discrimination task, except for increased activation in areas related to attentional processes compared to controls. Additionally, brain activity at rest showed significant changes in implanted participants, including cross modal visuo-auditory processing. Therefore, cochlear implants can restore the brain's activation pattern through long-term adaptive adjustments in intrinsic brain activity.

An approach designed to fail deaf children and their parents and how to change it.

The matter of raising and educating deaf children has been caught up in percepts of development that are persistently inaccurate and at odds with scientific research. These percepts have negatively impacted the health and quality of life of deaf children and deaf people in general. The all too prevalent advice is to raise the child strictly orally and wait to see what happens. Only when the child is seriously behind is a completely accessible language - a sign language - introduced, and that is far too late for protecting cognitive health. The medical profession, along with others, needs to offer parents better advice and better supports so that neither the children nor their parents wait and watch as the oral-only method fails. All must take responsible action to assure an approach that succeeds.

The Contribution of Noun and Verb Lexicon Sizes to Later Grammatical Outcomes in Mandarin-Speaking Children With Cochlear Implants.

PURPOSE: The present study evaluated the applicability of the sentence-focused framework to Mandarin-speaking children with cochlear implants (CIs) by examining the relative contribution of receptive/expressive noun and verb lexicon sizes to later grammatical complexity. METHOD: Participants were 51 Mandarin-speaking children who received cochlear implantation before 30 months of age. At 12 months after CI activation, parents were asked to endorse words that their child could understand only or understand and say using the infant version of the Early Vocabulary Inventory. At 24 months after CI activation, parents were asked to endorse the grammatical structures that their children were able to say using the Grammatical Complexity subtest in the Mandarin Communicative Development Inventory-Taiwan. Children's receptive/expressive noun and verb lexicon sizes and grammatical complexity scores were computed from these parent checklists. RESULTS: Correlational analyses showed that children's receptive/expressive noun and verb lexicon sizes at 12 months after CI activation were all highly correlated with their grammatical complexity scores at 24 months after CI activation (ρs = .52-.63, ps < .001). Regression analyses further revealed that verb lexicon sizes at 12 months after CI activation outweighed noun lexicon sizes in accounting for grammatical complexity at 24 months after CI activation. CONCLUSIONS: Our findings supported the prediction of the sentence-focused framework. Emphasizing the role of verbs in early intervention has the potential to enhance grammatical outcomes in Mandarin-speaking children with CIs. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.26129044.

Significant influence of prelingual deafness but less impact of elderly age at implantation on long-term psychoacoustic CI programming parameters.

OBJECTIVE: This study aimed to elucidate the long-term impact of prelingual deafness and elderly age at cochlear implantation on cochlear implant (CI) programming parameters and CI thresholds METHODS: We retrospectively reviewed patients who underwent cochlear implantation less than 5 years (Prelingual group) and equal and more than 18 years in our institute. The latter group was further divided into Adult and Elderly groups according to whether the patient was younger or older than 65 at implantation. From 152, 69, and 55 patients in the Prelingual, Adult, and Elderly groups, 242, 92, and 58 ears were included. We compared CI thresholds and CI programming parameters, including impedances, T/C levels, and dynamic ranges for 8 years after implantation between the Prelingual, Adult, and Elderly groups. RESULTS: The Prelingual group showed consistently lower CI thresholds than the Adult and Elderly groups during the postoperative 2-8 years, but no difference was detected between the Elderly and Adult groups, except at the postoperative 4 years. The elderly group's CI thresholds did not deteriorate until postoperative 8 years. The Prelingual group showed consistently larger T/C levels (minimum/maximum current strength from CI), especially C levels, than the other two groups. At the same time, there was no significant difference between the Elderly and Adult groups except for smaller dynamic ranges in the Elderly group until postoperative 2 years. These results in the CI programming parameters might explain the lower CI thresholds in the Prelingual group than in the other groups. Focusing on CI maps 1 and 3 years after implantation, the strength of the T/C levels was similar for all channels in the Prelingual group, but the Adult and Elderly groups showed larger electrical stimuli in channels responsible for the middle frequencies than those for the lower or higher frequencies. CONCLUSIONS: Our results suggest a significant influence of prelingual deafness but less impact of elderly age at implantation on long-term CI programming parameters and CI thresholds. The larger C levels and lower CI thresholds in the Prelingual group than in the Adult and Elderly groups implied that CI children with prelingual deafness tolerate and prefer larger CI stimuli, which may reflect the CI-dependent development of their auditory system before the critical period. No age-related reduction in hearing thresholds was observed in the Elderly group, probably because the CI compensates for age-related dysfunction of the peripheral auditory system.

A Consensus to Revise the Minimum Speech Test Battery-Version 3.

PURPOSE: The Minimum Speech Test Battery (MSTB) for adults was introduced in 1996 (Nilsson et al., 1996) and subsequently updated in 2011 (Advanced-Bionics et al., 2011). The MSTB has been widely used by clinicians as a guide for cochlear implant (CI) candidacy evaluations and to document post-operative speech recognition performance. Due to changes in candidacy over the past 10 years, a revision to the MSTB was needed. METHOD: In 2022, the Institute for Cochlear Implant Training (ICIT) recruited a panel of expert CI audiologists to update and revise the MSTB. This panel utilized a modified Delphi consensus process to revise the test battery and to improve its applicability considering recent changes in CI care. RESULTS: This resulted in the MTSB-Version 3 (MSTB-3), which includes test protocols for identifying not only traditional CI candidates but also possible candidates for electric-acoustic stimulation and patients with single-sided deafness and asymmetric hearing loss. The MSTB-3 provides information that supplements the earlier versions of the MSTB, such as recommendations of when to refer patients for a CI, recommended patient-reported outcome measures, considerations regarding the use of cognitive screeners, and sample report templates for clinical documentation of pre- and post-operative care. Electronic versions of test stimuli, along with all the materials described above, will be available to clinicians via the ICIT website (https://www.cochlearimplanttraining.com). CONCLUSION: The goal of the MSTB-3 is to be an evidence-based test battery that will facilitate a streamlined standard of care for adult CI candidates and recipients that will be widely used by CI clinicians.

Association of domain-general speed of information processing with spoken language outcomes in prelingually-deaf children with cochlear implants.

Spoken language development after pediatric cochlear implantation requires rapid and efficient processing of novel, degraded auditory signals and linguistic information. These demands for rapid adaptation tax the information processing speed ability of children who receive cochlear implants. This study investigated the association of speed of information processing ability with spoken language outcomes after cochlear implantation in prelingually deaf children aged 4-6 years. Two domain-general (visual, non-linguistic) speed of information processing measures were administered to 21 preschool-aged children with cochlear implants and 23 normal-hearing peers. Measures of speech recognition, language (vocabulary and comprehension), nonverbal intelligence, and executive functioning skills were also obtained from each participant. Speed of information processing was positively associated with speech recognition and language skills in preschool-aged children with cochlear implants but not in normal-hearing peers. This association remained significant after controlling for hearing group, age, nonverbal intelligence, and executive functioning skills. These findings are consistent with models suggesting that domain-general, fast-efficient information processing speed underlies adaptation to speech perception and language learning following implantation. Assessment and intervention strategies targeting speed of information processing may provide better understanding and development of speech-language skills after cochlear implantation.