A mixed method comparison of stigma toward autism and schizophrenia and effects of person-first versus identity-first language
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PROVIDER: S-EPMC10641499 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:Numerous style guides, including those issued by the American Psychological and the American Psychiatric Associations, prescribe that writers use only person-first language so that nouns referring to persons (e.g. children) always precede phrases referring to characteristics (e.g. children with typical development). Person-first language is based on the premise that everyone, regardless of whether they have a disability, is a person-first, and therefore everyone should be referred to with person-first language. However, my analysis of scholarly writing suggests that person-first language is used more frequently to refer to children with disabilities than to refer to children without disabilities; person-first language is more frequently used to refer to children with disabilities than adults with disabilities; and person-first language is most frequently used to refer to children with the most stigmatized disabilities. Therefore, the use of person-first language in scholarly writing may actually accentuate stigma rather than attenuate it. Recommendations are forwarded for language use that may reduce stigma.
| S-EPMC5545113 | biostudies-other
Project description:Lay abstractThe perspective of autistic individuals is often left uncaptured, and as a result they are often excluded from making decisions that impact them. Conventional communication can be challenging for many autistic individuals, especially those who are minimally verbal or who have an associated intellectual disability. Currently, a lack of appropriate methods to capture voices across the spectrum is a barrier. In the present study, we developed the Autism Voices protocol using universal design principles to capture the perspectives and experiences of autistic youth with a range of language or intellectual abilities. This protocol was then used with 33 autistic youth aged 11 to 18 years. A scoring rubric was developed to capture the unconventional communication used by the participants and the mitigation strategies used by interviewers to facilitate the interview. Many components of the protocol were found to effectively facilitate communication between the participant and interviewer, including the use of picture cards to support verbal questions/prompts, the fact that participants could respond with their preferred communication methods (writing, texting, pointing), and the fact that interviews were applied flexibly to adapt to each participant. Unconventional communication and mitigation strategies were mostly observed in interviews with minimally verbal individuals, but a fine-grained analysis showed participants were still communicating something through this unconventional communication. Our protocol could help promote the inclusion of more autistic individuals in research and showed that unconventional modes of communication like echolalia provide an understanding that participants' are invested in conversations and certain topics are more meaningful than others.
| S-EPMC9340132 | biostudies-literature
Project description:BackgroundAutism Spectrum disorder (ASD) has uniquely stigmatizing aspects because children with ASD have no physical markers of their condition. Parents are usually blamed and judgment from others is often internalized (felt stigma).AimThis study was conducted to determine knowledge about ASD, negative experiences (enacted stigma), internalization of stigma (felt or self stigma) and its correlates among parents of children with ASD in Lagos, Nigeria.MethodsThis was a cross-sectional study of 230 parents in Lagos, Nigeria employing mixed-method data collection methods. Quantitative data were collected using a structured interviewer-administered questionnaire and analyzed with Epi- Info™ version 7.0 statistical package. Data were summarized with proportions, mean and standard deviation. Chi square and Spearman's correlation tests were done, and the level of significance was pre-determined at 5% (p < 0.05). In-depth interviews were also conducted among six parents to further explore the topic. The interviews were analyzed narratively.ResultsThe proportion of mothers and fathers were 175 (76.1%) and 55 (23.9%) respectively. The mean age of respondents was 42 ± 8.5 years. Overall knowledge of ASD was very poor as only 3(1.3%) had good knowledge. Overall, 122(53%) usually had negative experience of parenting a child with ASD (enacted stigma), mothers (17.1%) more than fathers (9.1%). Majority 192(83.5%) internalized stigma. There was a low-moderate correlation between 'enacted' stigma and 'internalized' stigma (ρ- 0.400, p < 0.001). From in-depth interviews, many parents revealed that their child's condition had negative effects on the family. Many also recounted negative experience of stigma.ConclusionOverall, parents of children with ASD had poor knowledge of the condition. Majority internalized stigma and this increases with negative treatment from others. Parents should be properly educated about ASD. Community-based education to increase awareness about ASD in addition to encouraging people to show empathy and reduce stigmatizing behaviour towards parents of children with ASD are recommended.
| S-EPMC8607563 | biostudies-literature
Project description: Not available
| S-EPMC9066426 | biostudies-literature
Project description:Existing research suggests that individuals who are released from prison face considerable challenges in obtaining access to safe, stable, and affordable places to live and call home. This article draws on repeated qualitative interviews (conducted every 6 months over a period of 3 years) with 44 formerly incarcerated individuals, to understand how these individuals experience the search for a home after their prison release. The interviews show that the quest for a home is central to participants' reintegration projects as they seek to establish themselves as 'decent' and economically self-sufficient citizens, and shed stigmatized identities associated with incarceration, poverty, homelessness, and place. Interviews also suggest that their quest for a home is an arduous one as they encounter numerous barriers to housing arising from both structural and interpersonal forms of incarceration stigma. Somewhat paradoxically, the challenges that they face in accessing housing seem to hinder their ability to shed the stigmatized identities associated with their incarceration. Ultimately, the narratives presented here show how stigma can restrict access to a valuable material and symbolic resource (housing), resulting in ongoing stigmatization, and contributing to the enduring and discrediting mark of incarceration. In this way, the study illustrates how stigma that is enacted by both individuals and the state, that is embodied in place, and that is internalized and managed by stigmatized individuals themselves, can work to reproduce power and serve as justification for inequality.
| S-EPMC7449251 | biostudies-literature
Project description:Sign language (SL) motion contains information about the identity of a signer, as does voice for a speaker or gait for a walker. However, how such information is encoded in the movements of a person remains unclear. In the present study, a machine learning model was trained to extract the motion features allowing for the automatic identification of signers. A motion capture (mocap) system recorded six signers during the spontaneous production of French Sign Language (LSF) discourses. A principal component analysis (PCA) was applied to time-averaged statistics of the mocap data. A linear classifier then managed to identify the signers from a reduced set of principal components (PCs). The performance of the model was not affected when information about the size and shape of the signers were normalized. Posture normalization decreased the performance of the model, which nevertheless remained over five times superior to chance level. These findings demonstrate that the identity of a signer can be characterized by specific statistics of kinematic features, beyond information related to size, shape, and posture. This is a first step toward determining the motion descriptors necessary to account for the human ability to identify signers.
| S-EPMC8342317 | biostudies-literature
Project description:BackgroundWith the number of people with dementia dramatically increasing over time and dementia becoming a major health concern worldwide, scales have been developed to assess the stigma socially attached to this neurodegenerative disorder. There are, however, almost no available methods and assessment constructs for person-centered translation of dementia public stigma scales.ObjectiveTo develop such a method and such an assessment construct by translating the Dementia Public Stigma Scale (DPSS) into standard written Chinese.MethodsWe translated the DPSS following three major steps: (1) literal translation and mistranslation identification; (2) panel discussions of items with problematic translations; and (3) the final checking of the translated scale. Informed by the translation and adaptation process, we then developed a method for person-centered translation of dementia public stigma scales. Based on this method and our panel discussions, we finally proposed a tripartite assessment construct for quality evaluation of the translation of dementia public stigma scales.ResultsForward and backward translation did not work sufficiently in dementia public stigma scale translation. Mistranslations were induced by three major causes, including confusion caused by multiple Chinese meanings of the immediate Chinese direct translation, the lack of immediate Chinese direct translation because of varying positive/negative emotions attached to multiple translations, and the lack of culture-specific idioms in Chinese. Based on these factors, we proposed a tripartite dementia translation assessment construct. Following this assessment tool, we determined the best Chinese version that could further be tested for its psychometric properties among the public.ConclusionA method and an assessment construct for person-centered translation of dementia public stigma scales were developed. Such a method and such an assessment construct could be followed in the translation of dementia public stigma scales and the translation evaluation of such scales.
| S-EPMC10846308 | biostudies-literature
Project description:Neutral information enjoys beneficial processing when it is associated with self and significant others, but less is known about how the identity referential advantage is constructed in the initial stages of a relationship. We offer a novel solution by asking if a newly met stranger could provide a processing advantage in a shape-identity matching task where shapes were associated with the names of different identities. Each participant was paired with a newly met partner in a joint shape-identity matching task in which three shapes were associated with the names of the participant or his/her best friend, the partner, and a stranger, respectively. The participants judged whether or not the shape and name correctly matched.Intriguingly, the trials related to a newly met partner exhibited instant referential saliency, which was more accurate and faster than that related to the stranger's name (baseline) when the partner was physically present (experiments 1, 2, 4, 5), but not when the partner was absent (experiment 3). Self-advantage, however, was robust and lasting. The precursor of physical presence when forming referential saliency toward a stranger and its distinct temporal dynamics imply a novel referential benefit unendowed with familiarity, which is qualitatively different from the well-documented self/friend-advantage effect.
| S-EPMC6828888 | biostudies-literature
Project description:Automated language analysis of speech has been shown to distinguish healthy control (HC) vs chronic schizophrenia (SZ) groups, yet the predictive power on first-episode psychosis patients (FEP) and the generalization to non-English speakers remain unclear. We performed a cross-sectional and longitudinal (18 months) automated language analysis in 133 Spanish-speaking subjects from three groups: healthy control or HC (n = 49), FEP (n = 40), and chronic SZ (n = 44). Interviews were manually transcribed, and the analysis included 30 language features (4 verbal fluency; 20 verbal productivity; 6 semantic coherence). Our cross-sectional analysis showed that using the top ten ranked and decorrelated language features, an automated HC vs SZ classification achieved 85.9% accuracy. In our longitudinal analysis, 28 FEP patients were diagnosed with SZ at the end of the study. Here, combining demographics, PANSS, and language information, the prediction accuracy reached 77.5% mainly driven by semantic coherence information. Overall, we showed that language features from Spanish-speaking clinical interviews can distinguish HC vs chronic SZ, and predict SZ diagnosis in FEP patients.
| S-EPMC9261086 | biostudies-literature
Project description:BackgroundRecent studies suggest that the funding breakdown of autism research in the United States may not align with stakeholder priorities. Furthermore, the majority of stakeholder-engaged research involves parents of autistic individuals rather than autistic adults themselves, who may have differing perspectives on research and funding priorities. Women and non-binary adults have been historically underrepresented in autism research.ObjectivesThe goal of the current study was to examine the autism research priorities of a group of autistic adults, with a particular focus on how these priorities are influenced by one's gender identity.DesignA concurrent mixed-methods design was used for this study.MethodsSeventy-one autistic adults (n = 18 men, n = 29 women, n = 24 non-binary adults) completed an online survey regarding the current funding landscape for autism research. Participants ranked the main research topics of the Interagency Autism Coordinating Committee (IACC) and identified top-priority research areas through free-text responses. Response themes were analyzed using content analysis and compared with the existing topic rankings.ResultsOverall rankings of IACC research areas had a near inverse relationship with the amount of funding per research area. Main themes of stakeholder-generated research topics included "Characterization," "Societal Change," "Well-Being & Trauma," "Diagnosis & Healthcare," and "Accessibility & Services." There was a relatively high overlap between topics identified by the IACC and by the stakeholder-generated topics. Subtle but important differences in topics arose based on gender, with women and non-binary adults identifying topics that were not identified by autistic men.ConclusionUnique priorities generated by those typically excluded from autism research development underscore the importance of co-creating research with underrepresented stakeholders impacted by this work. The current study echoes the growing movement in the field of autism research to center autistic perspectives at every stage of research, including the establishment of funding priorities.
| S-EPMC10071159 | biostudies-literature