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1.
J Ment Health ; 32(1): 234-240, 2023 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-35770867

RESUMEN

BACKGROUND: Patient-oriented information disclosure has been advocated by the National Mental Health Law (NMHL) in China since 2012; however, reporting on diagnostic disclosure to patients with mental disorders after the NMHL is limited. AMIS: This study aims to investigate and compare the knowledge of mental health diagnosis among patients and their family members in China. METHODS: An inpatient survey was conducted among 205 patients with mental disorders and their family members. Group differences of the correctness of self-reported mental health diagnosis were compared, and logistic regression was performed to investigate correlates among both patients and their family members. RESULTS: Overall, 76.7% patients and 80.6% of their family members reported a correct diagnosis. Only 46.2% patients with psychotic disorders correctly knew their diagnosis, significantly lower than their family members and patients with non-psychotic disorders. Multivariate regression analysis found that the diagnosis of psychotic disorders was a risk factor of patients' diagnostic knowledge (AOR = 0.137; 95% CI = 0.044-0.429), while family members' diagnostic knowledge was associated with their employment (AOR = 6.125, 95% CI = 1.942-19.323) and parent-child relationship with patients (AOR = 3.719; 95% CI = 1.057-13.086). CONCLUSIONS: The majority of patients with non-psychotic disorders know their diagnosis correctly and informing family members of patients' diagnosis remains a common practice in psychiatric setting after the implementation of China's NMHL.


Asunto(s)
Pacientes Internos , Salud Mental , Humanos , Encuestas y Cuestionarios , Revelación , Familia/psicología , China
2.
BMC Psychiatry ; 22(1): 475, 2022 07 15.
Artículo en Inglés | MEDLINE | ID: mdl-35840911

RESUMEN

BACKGROUND: Dementia is a serious disease that can lead to disability because it impacts the individual's memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers of persons with dementia are often unknown after a dementia diagnosis is disclosed. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers. METHODS: A qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of persons with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method. RESULTS: The core category of this study was "diagnostic disclosure: Start the long road of care challenges", which was defined as describing the experiences of family caregivers of persons with dementia after first being informed of diagnosis. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: 'deciding to seek medical attention,' 'the moment of disclosure,' 'conveying information,' 'maintaining the persons' functioning,' and 'receiving support and living well with dementia.' Subcategories within each major category also emerged. CONCLUSIONS: Clear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from persons with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.


Asunto(s)
Cuidadores , Demencia , Actividades Cotidianas , Cuidadores/psicología , Demencia/diagnóstico , Demencia/psicología , Revelación , Familia/psicología , Humanos , Investigación Cualitativa
3.
Soins Gerontol ; 27(155): 33-37, 2022.
Artículo en Francés | MEDLINE | ID: mdl-35738763

RESUMEN

The disclosure of the diagnosis of Alzheimer's disease or a related disorder, or rather the time of the diagnostic disclosure, is a crucial step in the care of people with these neurocognitive diseases. While the disclosure procedures are well defined for practitioners who work in memory consultations, there is a grey area for hospital professionals who work in acute medical units.


Asunto(s)
Enfermedad de Alzheimer , Anciano , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/psicología , Revelación , Humanos
4.
Eur J Neurol ; 28(7): 2147-2155, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33368924

RESUMEN

BACKGROUND AND PURPOSE: Careful counseling through the diagnostic process and adequate postdiagnostic support in patients with mild cognitive impairment (MCI) is important. Previous studies have indicated heterogeneity in practice and the need for guidance for clinicians. METHODS: A joint European Academy of Neurology/European Alzheimer's Disease Consortium panel of dementia specialists was appointed. Through online meetings and emails, positions were developed regarding disclosing a syndrome diagnosis of MCI, pre- and postbiomarker sampling counseling, and postdiagnostic support. RESULTS: Prior to diagnostic evaluation, motives and wishes of the patient should be sought. Diagnostic disclosure should be carried out by a dementia specialist taking the ethical principles of "the right to know" versus "the wish not to know" into account. Disclosure should be accompanied by written information and a follow-up plan. It should be made clear that MCI is not dementia. Prebiomarker counseling should always be carried out if biomarker sampling is considered and postbiomarker counseling if sampling is carried out. A dementia specialist knowledgeable about biomarkers should inform about pros and cons, including alternatives, to enable an autonomous and informed decision. Postbiomarker counseling will depend in part on the results of biomarkers. Follow-up should be considered for all patients with MCI and include brain-healthy advice and possibly treatment for specific underlying causes. Advice on advance directives may be relevant. CONCLUSIONS: Guidance to clinicians on various aspects of the diagnostic process in patients with MCI is presented here as position statements. Further studies are needed to enable more evidence-based and standardized recommendations in the future.


Asunto(s)
Enfermedad de Alzheimer , Disfunción Cognitiva , Neurología , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/terapia , Biomarcadores , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/terapia , Consejo , Revelación , Progresión de la Enfermedad , Humanos , Sensibilidad y Especificidad
5.
AIDS Behav ; 25(2): 562-570, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32876906

RESUMEN

The process of human immunodeficiency virus (HIV) diagnosis disclosure for vertically infected young people living with HIV has proven decisive for acceptance/adherence to treatment. Herein, we present a cross-sectional study aiming at evaluating how individual and network related variables are associated with reactions to HIV disclosure among them. We used the egocentric approach with a structured questionnaire applied to individuals aged 15-25 years in an HIV referral center in Rio de Janeiro, Brazil. Outcome variable referred to adoption or not of risk behavior after diagnostic disclosure, was classified as "good"/"bad" reactions. Results showed that, of the 80 study participants, 25% reported a "bad reaction" to diagnostic disclosure, an outcome that was more common for patients with at least one friend in their social support network (OR 4.81; 95%CI [1.05-22.07]). In conclusion, a "bad reaction" to HIV serological disclosure may be associated with inadequate structure of the individual's social support network.


RESUMEN: El proceso de divulgación del diagnóstico del virus de inmunodeficiencia humana (VIH) es decisivo para la aceptación/adhesión a tratamiento de los jóvenes infectados verticalmente que viven con VIH. Presentamos un estudio transversal con el objetivo de evaluar cómo variables individuales y de red están asociadas con reacciones a la divulgación del VIH entre ellos. Utilizamos el enfoque egocéntrico por medio de un cuestionario estructurado aplicado a personas de 15-25 años en un Centro de Referencia para VIH en Río de Janeiro, Brasil. La variable de resultado se refiere a la adopción o no de comportamiento de riesgo después de la divulgación del diagnóstico, clasificadas como reacciones "buena"/"mala". Los resultados mostraron que, de los 80 participantes del estudio, el 25% reportó una "mala reacción" a la divulgación diagnóstica. Este resultado fue más común en pacientes con al menos un amigo en su red de apoyo social (OR:4.81; IC95% [1.05-22.07]). Como conclusión, una "mala reacción" a la divulgación serológica del VIH puede estar asociada con una estructura inadecuada de la red de apoyo social del individuo.


Asunto(s)
Revelación , Infecciones por VIH , Adolescente , Adulto , Brasil , Niño , Estudios Transversales , Infecciones por VIH/diagnóstico , Humanos , Autorrevelación , Revelación de la Verdad , Adulto Joven
6.
Int J Geriatr Psychiatry ; 36(2): 324-333, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-32896040

RESUMEN

OBJECTIVES: Mild cognitive impairment (MCI) is associated with an increased risk of further cognitive decline, partly depending on demographics and biomarker status. The aim of the present study was to survey the clinical practices of physicians in terms of biomarker counseling, management, and follow-up in European expert centers diagnosing patients with MCI. METHODS: An online email survey was distributed to physicians affiliated with European Alzheimer's disease Consortium centers (Northern Europe: 10 centers; Eastern and Central Europe: 9 centers; and Southern Europe: 15 centers) with questions on attitudes toward biomarkers and biomarker counseling in MCI and dementia. This included postbiomarker counseling and the process of diagnostic disclosure of MCI, as well as treatment and follow-up in MCI. RESULTS: The response rate for the survey was 80.9% (34 of 42 centers) across 20 countries. A large majority of physicians had access to biomarkers and found them useful. Pre- and postbiomarker counseling varied across centers, as did practices for referral to support groups and advice on preventive strategies. Less than half reported discussing driving and advance care planning with patients with MCI. CONCLUSIONS: The variability in clinical practices across centers calls for better biomarker counseling and better training to improve communication skills. Future initiatives should address the importance of communicating preventive strategies and advance planning.


Asunto(s)
Enfermedad de Alzheimer , Disfunción Cognitiva , Enfermedad de Alzheimer/diagnóstico , Biomarcadores , Disfunción Cognitiva/diagnóstico , Consejo , Revelación , Progresión de la Enfermedad , Europa (Continente) , Estudios de Seguimiento , Humanos , Sensibilidad y Especificidad
8.
Int J Geriatr Psychiatry ; 34(1): 114-121, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30246266

RESUMEN

OBJECTIVES: Timely diagnosis of dementia is recommended in national strategies. To what extent is it occurring across Europe, what factors are associated with it, and what is the impact on carers emotions of quality of diagnostic disclosure? METHODS/DESIGN: Survey of family carers recruited through 5 Alzheimer's associations (Czech Republic, Finland, Italy, the Netherlands, and Scotland). One thousand four hundred and nine carers participated, 84% completing online. Fifty-two percent were adult children, and 37% were spouses, with median age 57. Most (83%) were female. RESULTS: Nearly half (47%) of carers reported that an earlier diagnosis would have been preferable. Delaying factors included reluctance of the person with dementia, lack of awareness of dementia, the response of professionals, and delays within health systems. Recent diagnoses were no more likely to be considered timely, although professional responses appeared to be improving. Delayed diagnoses were more often reported by adult child carers and where the diagnosis was made in the later stages of dementia, or another condition had been previously diagnosed. In all countries except Italy, the diagnosis was shared with the person with dementia in the majority of cases. Timely diagnoses and higher quality diagnostic disclosure are associated with better adjustment and less negative emotional impact on carers in the short and medium term. CONCLUSIONS: Although the study sample were well educated and likely to be in touch with an Alzheimer organisation, many continued to experience the diagnosis of dementia as coming too late, and further work on public awareness, as well as on professional responses, is needed.


Asunto(s)
Cuidadores/psicología , Atención a la Salud/normas , Demencia/diagnóstico , Adulto , Anciano , Concienciación , Diagnóstico Precoz , Europa (Continente) , Femenino , Investigación sobre Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Competencia Profesional/normas , Esposos/psicología
9.
Med Anthropol Q ; 33(4): 501-516, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31206771

RESUMEN

While the debate on diagnostic disclosure is often based on the premise that knowing about one's condition (the diagnosis and its prognosis) is essential in securing the patient's autonomy, many people with dementia in Korea are not told directly about their diagnosis. This article concerns the laborious and ethically contentious post-diagnostic living undertaken by the families of people with dementia, which I call "living with/out dementia." This is a paradoxical form of living that has emerged through the increasing biomedicalization of dementia, the socialization of elder care, and an enduring fear of dependency in old age. Attending to how living with/out dementia comes to be initiated and maintained through efforts of care, I argue that nondisclosure entails a kind of ethical process through which dementia is un/done in the caregivers' struggle to truthfully engage with the person with dementia while actively hiding the diagnostic truth from him or her.


Asunto(s)
Cuidadores , Demencia , Anciano de 80 o más Años , Antropología Médica , Cuidadores/ética , Cuidadores/psicología , Demencia/etnología , Demencia/psicología , Demencia/terapia , Revelación/ética , Femenino , Humanos , Masculino , República de Corea/etnología , Esposos/psicología
10.
Psychooncology ; 27(5): 1457-1463, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-28833916

RESUMEN

OBJECTIVE: In the United States and most European countries, cancer diagnoses are disclosed to patients. In China, however, the trend toward full disclosure has progressed slowly. The present study aimed to explore attitudes toward truth-telling practice among physicians, patients, patients' family members, and the general population, and reasons for nondisclosure. METHODS: We administered a short survey to 212 physicians, 143 patients with cancer, 413 family members of patients with cancer, and 1415 members of the general population. A MANOVA was performed to examine group differences in attitudes toward cancer disclosure. In addition, we interviewed 20 oncologists. Interview data were analyzed using NVivo10. After the interview, we administered another short survey to 143 patients with cancer. RESULTS: Quantitative data indicated that physicians were the least, and patients the most, in favor of disclosure. Qualitative data among physicians and follow-up surveys among cancer patients revealed 5 reasons for the concealment of cancer diagnoses by physicians, including lack of awareness of patients' right to knowledge, cultural influences, insufficient medical resources and training, families' financial concerns, and the need to protect doctors from violence. CONCLUSION: There is a discrepancy between the needs of patients and those in medical practice. These results deepen our understanding regarding the reasons for oncologists' attitudes toward nondisclosure.


Asunto(s)
Actitud del Personal de Salud , Cultura , Familia/psicología , Neoplasias/diagnóstico , Pacientes/psicología , Médicos/psicología , Revelación de la Verdad , Adulto , Anciano , Concienciación , China , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Oncólogos , Relaciones Médico-Paciente , Encuestas y Cuestionarios
11.
Tijdschr Gerontol Geriatr ; 48(4): 169-176, 2017 Sep.
Artículo en Neerlandesa | MEDLINE | ID: mdl-28656536

RESUMEN

Giving adequate diagnostic information is considered to be fundamental in dementia care. An important question is how the diagnostic disclosure in dementia actually takes place. The aim of this explorative ethnographic study was therefore to provide insight into the disclosure practice of medical specialists. For this study, 22 interviews performed by seven medical specialists were analyzed.The results of this study show that the observed doctors are direct and explicit in disclosing the diagnosis. Actual (medical) information about the diagnosis and the performed investigations is provided. The main areas for improvement are involving the patient in the conversation, align your language to the lifeworld of the patient and his/her significant other(s), avoiding the use of medical jargon, discussing the consequences of the diagnosis for daily life, and explicitly recognizing the emotional and existential challenges associated with the disclosure. In providing further information, doctors could discuss emotional and existential support more specifically.


Asunto(s)
Cuidadores/educación , Cuidadores/psicología , Demencia/diagnóstico , Revelación de la Verdad , Manejo de Caso , Humanos , Educación del Paciente como Asunto , Relaciones Profesional-Familia
12.
J Intellect Disabil Res ; 59(5): 474-86, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25059276

RESUMEN

BACKGROUND: Research suggests children with genetic disorders exhibit greater coping skills when they are aware of their condition and its heritability. While the experiences parents have at diagnosis may influence their decision to disclose the diagnosis to their children, there is little research into this communication. The aim of the current study was to examine the relationship between the diagnosis experience and the disclosure experience for parents of children with developmental disorders of a known genetic aetiology: parents of children with 22q11.2 deletion syndrome (22q11DS) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile X syndrome) and a group where diagnosis generally occurs early (i.e. Down syndrome). METHOD: The sample comprised 559 parents and caregivers of children with genetic developmental disorders, and an online survey was utilised. Items from the questionnaire were combined to create variables for diagnosis experience, parental disclosure experience, child's disclosure experience, and parental coping and self-efficacy. RESULTS: Across all groups parents reported that the diagnosis experience was negative and often accompanied by a lack of support and appropriate information. Sixty-eight per cent of those in the 22q11DS and 58.3% in the Similar Conditions groups had disclosed the diagnosis to their child, whereas only 32.7% of the Down syndrome group had. Eighty-six per cent of the Down syndrome group felt they had sufficient information to talk to their child compared with 44.1% of the Similar Conditions group and 32.6% of the 22q11DS group. Parents reported disclosing the diagnosis to their child because they did not want to create secrets; and that they considered the child's age when disclosing. In the 22q11DS and Similar Conditions groups, a poor diagnosis experience was significantly associated with negative parental disclosure experiences. In the Similar Conditions group, a poor diagnosis experience was also significantly associated with a more negative child disclosure experience. CONCLUSIONS: As expected this study highlights how difficult most parents find the diagnosis experience. Importantly, the data indicate that the personal experiences the parents have can have a long-term impact on how well they cope with telling their child about the diagnosis. It is important for clinicians to consider the long-term ramifications of the diagnosis experience and give the parents opportunities; through, for instance, psychoeducation to prepare for telling their child about the diagnosis. Further research is warranted to explore what type of information would be useful for parents to receive.


Asunto(s)
Síndrome de Deleción 22q11 , Síndrome de Down , Síndrome del Cromosoma X Frágil , Padres/psicología , Síndrome de Prader-Willi , Revelación de la Verdad , Esclerosis Tuberosa , Síndrome de Deleción 22q11/genética , Síndrome de Deleción 22q11/psicología , Adolescente , Adulto , Factores de Edad , Niño , Preescolar , Síndrome de Down/genética , Síndrome de Down/psicología , Femenino , Síndrome del Cromosoma X Frágil/genética , Síndrome del Cromosoma X Frágil/psicología , Pruebas Genéticas , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Síndrome de Prader-Willi/genética , Síndrome de Prader-Willi/psicología , Esclerosis Tuberosa/genética , Esclerosis Tuberosa/psicología
13.
Disabil Rehabil ; 44(16): 4519-4530, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-33771093

RESUMEN

PURPOSE: Little research has evaluated how disclosure of an autism diagnosis influences peer engagement and understanding of children with autism in community recreation programs. This study describes outcomes of disclosing an autism diagnosis for a child with autism participating in mainstream, community summer camps. METHODS: This case study includes a 9-year-old boy diagnosed with autism who participated in two camps, one in which he disclosed and one in which he did not disclose. Quantitative data on peer engagement states and reciprocal interactions were coded through structured behavioral observation of video recorded on the first, second, and last day of each program. Qualitative interviews about perceived outcomes of disclosure were completed with the child with autism, camp leaders, and peers in the disclosure camp. RESULTS: Peer engagement and reciprocal interactions improved following the disclosure protocol and continued to improve on the final day of the camp, which was not observed in the non-disclosure camp. A key qualitative theme revealed that changed behavioral attribution was the main contributor to improved inclusion following disclosure. CONCLUSIONS: This study provides preliminary data to support that disclosure may be a simple intervention to improve peer engagement and understanding of children with autism in community programs.IMPLICATIONS FOR REHABILITATIONChildren with Autism Spectrum Disorder are at high risk of experiencing social exclusion, especially in community programs.A disclosure protocol (disclosure + explanation for behaviors) could be a simple intervention to facilitate peer acceptance and inclusion of children with autism, however this intervention has not been evaluated in a real life context.This study provides preliminary evidence to support the use of a simple disclosure protocol for families who want to disclose, within short-term community programs.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Trastorno Autístico/diagnóstico , Niño , Revelación , Familia , Humanos , Masculino , Grupo Paritario
14.
Autism Dev Lang Impair ; 6: 23969415211022955, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-36381532

RESUMEN

Autistic individuals often struggle to find and maintain employment. This may be because many workplaces are not suited to autistic individuals' needs. Among other difficulties, many autistic employees experience distracting or disruptive sensory environments, lack of flexibility in work hours, and unclear communication from colleagues. One possible way of mitigating these difficulties is for employees to disclose their diagnosis at work. While disclosure may increase understanding and acceptance from colleagues, it can also lead to discrimination and stigma in the workplace. Research has shown that disclosure outcomes are often mixed, but it is unclear what factors are associated with either positive or negative outcomes of disclosure for autistic people. This study aimed to identify these factors and explore the reasons why autistic employees choose to disclose or to keep their diagnosis private. Semi-structured interviews were conducted with 24 clinically-diagnosed autistic adults (12 male and 12 female) who were currently, or had been, employed in the UK (mean age = 45.7 years). Through thematic analysis, we identified three main themes under experiences of disclosure: 1) A preference for keeping my diagnosis private; 2) The importance of disclosure in the workplace; and 3) Disclosure has mixed outcomes. We also identified three factors associated with disclosure outcomes: understanding of autism, adaptations, and organisational culture. These results have implications for improving inclusive practices on both the individual and organisational level to ensure more positive disclosure experiences for autistic employees.

15.
Clin Neuropsychol ; 35(8): 1398-1414, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-32301377

RESUMEN

OBJECTIVE: The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC). METHOD: Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis. RESULTS: Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information. CONCLUSION: Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives.


Asunto(s)
Disfunción Cognitiva , Revelación , Familia , Humanos , Pruebas Neuropsicológicas , Investigación Cualitativa
16.
J Autism Dev Disord ; 51(10): 3533-3546, 2021 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-33387242

RESUMEN

Receiving a diagnosis of autism for their child can be a pivotal moment for parents, yet there is little research about how providers can predict parent reactions and adjust their feedback. We investigated factors related to parent reactions during the disclosure session using interviews with providers (n = 6), a parent focus group (n = 10), and a mixed-methods survey of parents (n = 189) of recently diagnosed children. Parents' prior knowledge of autism and anxiety about diagnosis predicted emotional reactions and readiness for next steps. Families anxious about receiving a diagnosis are most in need of information but may leave the session feeling lost and unprepared. Providers can promote positive emotional reactions for parents and prevent confusion by increasing their own positivity, warmth, respect, clarity, and confidence.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Trastorno Autístico/diagnóstico , Niño , Revelación , Humanos , Padres , Encuestas y Cuestionarios
17.
Soc Sci Med ; 279: 114034, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-34020158

RESUMEN

This paper provides an analytical framework for explaining the practice of diagnostic disclosure by drawing on theoretical developments regarding the question of "culture in action." Based on ethnographic and interview data collected from fieldwork at a major cancer hospital in China from 2015 to 2019, this paper explains how doctors and family members make decisions about diagnostic disclosure. We argue that it is important to understand the practice of diagnostic disclosure as motivated by the actors' values on the one hand, and constrained and enabled by the actors' skills on the other hand. It is also necessary to distinguish between personal and public values, as well as medical and interpersonal skills. Based on these distinctions, we will be better equipped to explain why diagnostic disclosure has encountered difficulties in family-centered societies, such as China.


Asunto(s)
Revelación , Médicos , China , Toma de Decisiones , Familia , Humanos , Consentimiento Informado , Revelación de la Verdad
18.
J Autism Dev Disord ; 50(9): 3367-3379, 2020 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31555942

RESUMEN

Adults with autism spectrum disorder (ASD) often experience social marginalisation. This study uses a vignette-based design to clarify whether diagnostic disclosure affects social marginalisation in workplace contexts. It investigates two potential mediators of this relationship: affective response to and theory of mind for people with ASD. Participants (n = 170) read a description of a hypothetical co-worker with ASD traits, whose diagnosis was either disclosed or concealed. Providing a diagnostic label significantly reduced participants' desire to socially distance themselves from the target. This effect was mediated by positive affective responses. Diagnostic disclosure did not influence theory of mind for people with ASD but did increase tendencies to attribute primary emotions to the target; however, this did not relate to social distance outcomes.


Asunto(s)
Trastorno del Espectro Autista/psicología , Revelación , Marginación Social , Adulto , Emociones , Femenino , Humanos , Masculino
19.
Autism Adulthood ; 1(4): 250-257, 2019 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-36601322

RESUMEN

Background: Autistic adults receive unfavorable first impressions from typically developing (TD) adults, but these impressions improve when TD adults are made aware of their diagnosis. It remains unclear, however, how autistic adults form first impressions of other autistic adults, and whether their impressions are similarly affected by diagnostic awareness. Methods: In this study, 32 autistic and 32 TD adults viewed brief videos of 20 TD and 20 autistic adults presented either with or without their diagnostic status and rated them on character traits and their interest in interacting with them in the future. Results: Findings indicated that autistic raters shared the TD tendency to evaluate autistic adults less favorably than TD adults, but these judgments did not reduce their social interest for interacting with autistic adults as they did for TD raters. Furthermore, informing raters of the diagnostic status of autistic adults did not improve first impressions for autistic raters as they did for TD raters, suggesting that autistic raters either already inferred their autism status when no diagnosis was provided or their impression formation is less affected by awareness of a person's diagnosis. Conclusions: Collectively, these results demonstrate that autistic observers make trait inferences about autistic adults comparable with those made by TD observers-suggesting a similar sensitivity to perceiving and interpreting social signifiers that differ between TD and autistic presentation styles-but unlike their TD counterparts, these trait judgments are not perceived as an impediment to subsequent social interaction and are relatively consistent regardless of diagnostic disclosure. Lay summary: Why was this study done?: Typically developing (TD) adults often form negative first impressions of autistic adults and report less of a desire to interact with them. These biases affect the social experiences of autistic adults and can contribute to their social disability. More optimistically, however, first impressions of autistic adults improve when TD adults are more knowledgeable about autism and are made aware of their diagnostic status, suggesting that familiarity and understanding can promote acceptance of autistic differences. One group that has high familiarity with autism is autistic adults themselves, but no study to date has examined how autistic adults form impressions of TD adults and other autistic adults.What was the purpose of this study?: The purpose of this study was to examine whether first impressions of, and social interest in, autistic adults differ between autistic and TD raters, and determine whether disclosure of a person's diagnosis affects these patterns differently for autistic and TD raters.What did the researchers do?: A total of 32 TD and 32 autistic adult raters viewed videos of 40 unfamiliar adults (20 TD and 20 autistic individuals) and rated each person on six traits (awkwardness, attractiveness, assertiveness, likeability, trustworthiness, and intelligence) and four items assessing their social interest in future interaction with the person in the video. Videos were presented either with or without the person's diagnosis to see whether this information affects impressions formed by autistic and TD raters.What were the results of the study?: Consistent with prior work, TD raters formed more negative first impressions of autistic adults than TD adults. Meanwhile, autistic raters formed more positive impressions overall, but shared the TD pattern of rating autistic adults less favorably than TD adults on several traits. However, contrary to theories about reduced social motivation in autism, autistic raters expressed greater interest than TD raters in future interaction with people in the videos and this social interest was largest for other autistic people. Finally, diagnostic disclosure improved impressions of autistic adults made by TD raters but not by autistic raters.What do these findings add to what was already known?: These findings provide empirical evidence that autistic adults detect and interpret autistic social differences similarly to TD adults, but they express greater inclusivity and less discriminatory attitudes about these differences. These results add to a growing literature about how autistic people are perceived, how these perceptions affect their social experiences, and how similarity between social partners can support social connection.What are potential weaknesses in the study?: The included sample was predominantly Caucasian and male, and did not include participants with intellectual disability. Future studies should examine whether the patterns here extend to more diverse samples.How will these findings help autistic adults now or in the future?: This study provides additional evidence that social opportunities for autistic adults are affected by the perceptions and biases of potential social partners. Autistic observers may share the TD bias toward less favorable trait evaluation of autistic adults, but this did not lessen their social interest in interacting with autistic adults the way it did for TD observers. Opportunities for autistic adults to interact with other autistic adults may facilitate relationship development in this population who often struggle to have their social needs met. In addition, findings suggest that acceptance of autistic people increases with familiarity of autism itself. Improving attitudes about autism among TD people may be one effective way to improve the social experiences of autistic people within neurotypical environments.

20.
Autism ; 23(1): 50-59, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-29039208

RESUMEN

A practical consideration for many intellectually able adults with autism spectrum disorder (ASD) is whether to disclose their diagnostic status or try to mask their autistic characteristics to avoid judgment and discrimination. Here, we assessed first impressions of adults with ASD and typically developing controls (N = 40) made by typically developing observers (N = 215) when their diagnostic status was either withheld, accurately provided, or inaccurately provided. First impressions were less favorable for ASD participants compared to typically developing controls across a range of judgments, but were significantly more positive when accurately labeled as ASD compared to when no label was provided, when mislabeled as typically developing, or when mislabeled as having schizophrenia. For typically developing participants, ratings did not change when accurately labeled but improved when mislabeled as ASD. Greater autistic traits for the ASD and typically developing participants were associated with less favorable first impressions, and females were rated more favorably than males. Autism knowledge of the raters, but not age, IQ, or autistic traits, was positively associated with more favorable impressions of ASD participants. Collectively, these findings suggest that first impressions for intellectually able adults with ASD improve with diagnostic disclosure and increased autism understanding on the part of peers.


Asunto(s)
Trastorno Autístico/psicología , Conocimientos, Actitudes y Práctica en Salud , Grupo Paritario , Autorrevelación , Adulto , Estudios de Casos y Controles , Femenino , Humanos , Masculino , Estigma Social , Encuestas y Cuestionarios , Adulto Joven
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