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.

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.

Differences in the type of vocabulary understood by deaf and hearing students: Results to guide interventions.

INTRODUCTION: Vocabulary knowledge is an essential element in language development. There is evidence of significant differences in vocabulary knowledge between deaf children and hearing peers of the same age. These differences put deaf students at a disadvantage when compared to their hearing counterparts. The aim of this study was to investigate whether certain types of words characterise the lexical difficulties of deaf students. Our starting point is that this knowledge is needed to design interventions that are adapted to the particular needs of these students for their lexical development. METHODS: We evaluated the lexical comprehension of 90 Spanish students. The sample comprised 45 hearing students and 45 students with severe or profound hearing loss. Both groups were attending the later years of primary school (8 to -12-year-olds). They were tested using the Spanish Peabody Picture Vocabulary Test-III. The performance of both groups was statistically compared using percentiles and standard scores as well as a selected set of words from the test. RESULTS: No significant differences between hearing and deaf groups were found by age, sex, and sociocultural level. Significant differences were found between groups in their percentile and standard scores. There were no significant differences in performance between the two groups on only five of the 25 words with the highest error rate in the deaf group. The qualitative analysis of the remaining 20 words that were especially challenging for deaf students reveals results of interest which could help guide interventions. CONCLUSIONS: The results indicate the need for lexical intervention for deaf students in the final years of primary school. The specialised support service for deaf learners should approach the intervention by targeting a specific type of vocabulary, making the semantic relationships between these words more transparent and promoting a deeper understanding of them.

Narrative reconstruction in deaf and hearing children: A comparative study in the context of Arabic diglossia.

This study explores the narrative skills of deaf and hearing children within the context of Arabic diglossia, a linguistic environment characterised by significant differences between spoken dialects and formal written language. Using Stein and Glenn's (1979) and Bruner's (1991) frameworks, the research analyses the narrative constructions of 13 hearing and 13 deaf children in Kuwait. The findings reveal that hearing children, benefiting from consistent exposure to spoken and formal Arabic, produced more coherent and detailed narratives compared to deaf children. Hearing participants also demonstrated greater vocabulary diversity. Age-related improvements in narrative skills were more pronounced among hearing children, while the impact of sign language exposure on narrative abilities was significant among deaf children. The study underscores the critical role of early language exposure and educational support in fostering narrative development, particularly in a diglossic context. These findings highlight the need for specialised educational strategies to support the unique narrative development needs of deaf children.

Factors associated with the anxiety score of deaf and hearing mothers. / Fatores associados ao escore de ansiedade de mães surdas e ouvintes.

PURPOSE: To associate maternal anxiety with sociodemographic factors, breastfeeding practices, oral habits, and the child's entry into daycare among deaf and hearing (non-deaf) mothers. METHODS: This retrospective comparative cross-sectional study included 116 mothers (29 deaf and 87 hearing) of children aged between two and five years. Deaf mothers belonged to a reference center in the city, while hearing mothers were contacted in public daycares where their children were enrolled. Mothers underwent interviews covering socio-economic factors and child development-related aspects. Additionally, they completed the Brazilian Beck Anxiety Inventory, adapted for both deaf and hearing individuals, serving as instruments to assess anxiety. The Kolmogorov-Smirnov normality test, Kruskal Wallis test, Mann-Whitney test, and Poisson Regression were employed for statistical analyses (p<0.05). RESULTS: Deaf mothers exhibited anxiety scores one and a half times higher than hearing mothers. Moreover, mothers of children with thumb-sucking habits showed higher anxiety scores, while mothers whose children started attending daycare as infants demonstrated lower anxiety scores compared to mothers of children without such habits and who did not attend daycare. CONCLUSION: Deaf mothers displayed higher anxiety levels when compared to hearing mothers. Children's behaviors, such as thumb-sucking habits, and early enrollment in daycare during the first year of life influenced maternal anxiety.

OBJETIVO: Associar a ansiedade materna aos fatores sociodemográficos, pratica de aleitamento, hábitos bucais e ingresso da criança em creche entre mulheres surdas e ouvintes. MÉTODO: Participaram deste estudo transversal retrospectivo comparativo, 116 mães (29 surdas e 87 ouvintes) de crianças na faixa etária entre dois e cinco anos. As mães surdas pertenciam a um centro de referência da cidade e as mães ouvintes foram contatadas em creches públicas, onde seus filhos estavam matriculados. As mães foram submetidas a entrevista sobre fatores socioeconômicos e relacionados ao desenvolvimento dos filhos, além de realizarem o preenchimento do Inventário Brasileiro de Ansiedade de Beck, nas versões para surdos e ouvintes, que foram instrumentos usados para avaliar a ansiedade. O teste de normalidade de Kolmogorov-Smirnov, os testes de Kruskal Wallis, Mann-Whitney e Regressão de Poisson foram utilizados para análises estatísticas (p <0,05). RESULTADOS: Mães surdas apresentaram escore de ansiedade uma vez e meia maior que mães ouvintes. Além disso, mães de crianças com hábito de sucção de dedo apresentaram maior escore de ansiedade e mães cujos filhos começaram a frequentar a creche ainda bebês apresentaram menor escore de ansiedade, quando comparados a crianças sem o hábito e que não frequentavam a creche. CONCLUSÃO: Mães surdas apresentaram maior ansiedade quando comparadas às ouvintes. Comportamento dos filhos com hábitos de sucção de dedo e o ingresso em creches no primeiro ano de vida influenciaram a ansiedade materna.

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.

Communication breakdown repair skills: Comparison between deaf and hard-of-hearing, and normal-hearing adolescents.

OBJECTIVES: Communication breakdowns and their repair by deaf and hard-of-hearing (DHH) and hearing adolescents were examined in conversation with an unfamiliar communication partner. METHOD: This study compared the number and type of clarification requests and responses to those requests of 16 DHH and 16 normal-hearing adolescents aged 11-16 years, in a 10-minute conversation with an unfamiliar adult. It also analyzed the relationship between speech intelligibility, communication breakdowns, and clarification requests by an unfamiliar adult. the Children's Communication Checklist (CCC) was completed by parents. RESULTS: DHH adolescents demonstrated significantly higher usage of nonverbal clarification requests and verbal and nonverbal responses to clarification requests compared to normal-hearing adolescents in conversations with an unfamiliar adult. Furthermore, the subscale scores of the CCC and the speech intelligibility of DHH adolescents were significantly lower than those of normal-hearing adolescents. There were correlations between speech intelligibility and the speech subscale score of the CCC, as well as correlations between the pragmatic composite score of the CCC, the number of communication breakdowns, and the number of clarification requests by an unfamiliar adult. DISCUSSION: The adolescents with DHH experienced more communication breakdowns in conversation with an unfamiliar adult and the number of clarification requests made by adults was higher.

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.