Disability identity predicts lower anxiety and depression in multiple sclerosis

PURPOSE/OBJECTIVE: Disability identity involves affirming one’s status as a person with a disability and incorporating this group membership into one’s identity. It is associated with well-being in populations of people with disabilities, but its relationship with depression and anxiety in multiple sclerosis (MS) has yet to be examined. It was hypothesized that disability identity would predict lower depression and anxiety above and beyond the effects of demographic and disability variables. RESEARCH METHOD/DESIGN: 106 participants with MS completed a cross-sectional internet survey measuring disability identity, depression and anxiety, activities of daily living performance (ADL), MS duration, and demographic variables. Inclusion criteria were as follows: self-reported diagnosis of MS, self-reported impairment in walking, age 18 or older, living in the U.S., and English fluency. RESULTS: Hierarchical regressions revealed that disability identity was a unique predictor of lower depression and anxiety. Older age and higher ADL performance also predicted lower depression and anxiety. CONCLUSIONS/IMPLICATIONS: Stronger disability identity predicts lower psychological distress in MS. Clinical implications include supporting patient disability identity by encouraging involvement in disability support and advocacy groups. Future research should examine psychosocial interventions to affirm identity.Keywords: Multiple Sclerosis, Anxiety, Disability identity, Depression, Social identity theor

A shock to the (health) system: Experiences of adults with rare disorders during the first COVID-19 wave

BackgroundBefore COVID-19, people with rare diseases (RD) experienced numerous disparities in quality of life and healthcare access and quality, yet little is known about the experiences of this underserved group during the pandemic.ResultsDuring the first wave of the COVID-19 pandemic in the United States, spring and summer of 2020, 759 participants representing 231 unique RDs responded to open-ended questions about the impact of the pandemic on life with a RD, healthcare access, and coping. Qualitative conventional content analysis was used to analyze responses. Identified themes represented positive and negative dimensions of change, including a shock to the (health) system, coping with uncertainty, and the value of social support while isolated.ConclusionsLimitations in healthcare access and quality were the most frequently described as impacts of COVID-19. Other major negative impacts included exacerbation of symptoms, psychological distress, and a lack of usual social support and reliable information. However, participants also noted silver linings, especially in healthcare. For some, expanded telehealth enhanced their ability to access medical and mental health providers and RD specialists. Finally, many participants hoped that, by highlighting social and health inequities faced by people with RDs and other minorities, the pandemic would prompt greater understanding and policies that could improve the quality of life of the RD community

Thin Slice Judgments in the Clinical Context

Clinicians make a variety of judgments about their clients, from judging personality traits to making diagnoses, and a variety of methods are available to do so, ranging from observations to structured interviews. A large body of work demonstrates that from a brief glimpse of another’s nonverbal behavior, a variety of traits and inner states can be accurately perceived. Additionally, from these thin slices of behavior, even future outcomes can be predicted with some accuracy. Certain clinical disorders such as Parkinson’s disease and facial paralysis disrupt nonverbal behavior and may impair clinicians’ ability to make accurate judgments. In certain contexts, personality disorders, anxiety, depression, suicide attempts and outcomes can be detected from others’ nonverbal behavior. Additionally, thin slices can predict psychological adjustment to divorce, bereavement, sexual abuse, and well-being throughout life. Thus, for certain traits and disorders, judgments from a thin slice could provide a complementary tool for the clinician’s toolbox.Keywords: person perception, psychological disorders, nonverbal behavior, accurac

Communicating Without the Face: Holistic Perception of Emotions of People With Facial Paralysis

People with facial paralysis (FP) report social difficulties, but some attempt to compensate by increasing expressivity in their bodies and voices. We examined perceivers’ emotion judgments of videos of people with FP to understand how they interpret the combination of an inexpressive face with an expressive body and voice. Results suggest perceivers form less favorable impressions of people with severe FP, but compensatory expression is effective in improving impressions. Perceivers seemed to form holistic impressions when rating happiness and possibly sadness. Findings have implications for basic emotion research and social functioning interventions for people with FP

“The elephant in the room”: Disclosing facial differences

Due to high visibility and low public awareness, people with facial differences (FD) frequently face decisions about whether to explain or disclose their FD. Although disclosure of concealable stigma has been frequently researched, little work has examined disclosure from the perspectives of people with FD, whose stigma is often not concealable. Thematic analysis was used to explore semistructured interviews of adults (n = 16) with diverse FDs. Disclosure approaches varied dependent on the discloser, the disclosee, and the context. Two themes illustrated participants’ approaches to (non)disclosure: agentic and autonomous. Agentic described when participants felt they had no choice in explaining or not explaining their condition, which fell into subthemes of forced disclosure, forced nondisclosure, and unauthorized disclosure. Those who used autonomous approaches made the deliberate decision to disclose or not disclose their FD to others. Autonomous subthemes included social avoidance, concealment, false disclosure, selective disclosure, indiscriminate disclosure, and broadcasting. Three experiential themes—misunderstanding, connection, and empowerment—characterized antecedents, experiences with, and consequences of (non)disclosure. Agentic (non)disclosure and autonomous (non)disclosure were frequently associated with the misunderstanding theme, while autonomous disclosure involved themes of connection and empowerment and was thus experienced as more beneficial. Participants’ advice was to allow people with FD disclosure autonomy. Improved social representation of people with FDs, public awareness, and stigma reduction will help remove the onus of disclosure from individuals with F

Teaching About Disability in Psychology: An Analysis of Disability Curricula in U.S. Undergraduate Psychology Programs

Historically, Psychology education about disability focused narrowly on psychiatric and cognitive disabilities. Furthermore, disability tends to be viewed from the medical model, rather than the social model endorsed by disability scholars, which describes disability as primarily socially constructed. Course offerings for the Psychology departments of 98 top-ranked undergraduate programs in the U.S. were content-analyzed to identify the types of disabilities discussed and the extent to which they utilized a medical or social model. Courses examining psychiatric disabilities were offered at all departments. However, categories such as physical, sensory, and intellectual disabilities were covered in fewer than 20% of departments. Course descriptions contained significantly more medical than social model content. Results suggest many types of disabilities are underrepresented in Psychology programs and the medical model continues to prevail.Keywords: medical model of disability, social model of disability, disability, undergraduate psychology curricul

Attitudes Toward Disability: The Relationship Between Attitudes Toward Disability and Frequency of Interaction with People with Disabilities (PWD)

The social and medical models of disability are sets of underlying assumptions explaining people's beliefs about the causes and implications of disability. The medical model is the predominant model in the United States that is associated with the belief that disability is an undesirable status that needs to be cured (Darling & Heckert, 2010). This model focuses on the diagnosis, treatment and curative efforts related to disability. The social model is preferred by disability activists and researchers which focuses on society’s involvement in disability, such as stigmatization, discrimination and the interpersonal barriers that are features of one’s disability. The social model suggests that society disables individuals and is the cause of impairment (Olkin, 2003). Allport’s contact hypothesis states that increased contact with people with disabilities (PWD) will reduce prejudice through relationship building and social connection (Allport, 1954). Pettigrew’s Intergroup Contact Theory, similar to Allport’s contact hypothesis, argues that essential conditions must be met in order to reduce feelings of prejudice. These conditions are: learning about the outgroup, changing behavior, generating affective ties, and ingroup reappraisal (Pettigrew, 1998). Based on these theories, increased interaction with PWD should result in more favorable attitudes about PWD. We further propose that contact may serve to alter disability model orientation, which in turn may affect attitudes. This is the first large-scale study that examines how disability models influence the relationship between contact and attitudes toward PWD. It was hypothesized that participants with more frequent interactions with PWD would have more favorable attitudes towards disability. This would be mediated by models of disability. Participants of the study were undergraduate students enrolled in a required university course, with a majority of them being in their first year. The survey consisted of the Attitudes Toward Disabled Persons scale, a single item assessing frequency of contact with PWD, and the Darling (2013) social and medical model scales, and was distributed to a total of 1,506 students. Supporting our hypothesis, the medical and social models partially mediated the relationship between contact and attitudes towards disability. Medical model compared to social model was more strongly associated with contact and attitudes. This suggests that contact with PWD can help decrease medical model beliefs in general, but is less effective at promoting social model beliefs. Implications of this study might suggest that more frequent contact with PWD on college campuses could be possible by hiring more educators who disclose their disability or accommodate to more people with disabilities as students. As for future directions of this study, an expansion beyond college students could provide insight into different demographics and their attitudes toward disability, and could also reveal the potential influence of cohort effects. Future studies may also want to further assess to what degree attitudes and perceptions about PWD change when certain conditions are met, such as those mentioned in Pettigrew’s Intergroup Contact Theory

Designing an implementation science clinical trial to integrate hypertension and cardiovascular diseases care into existing HIV services package in Botswana (InterCARE)

Background: Despite success in HIV treatment, diagnosis and management of hypertension (HTN) and cardiovascular disease (CVD) remains suboptimal among people living with HIV (PLWH) in Botswana, with an overall HTN control of only 19% compared to 98% HIV viral suppressed. These gaps persist despite CVD primary care national guidelines and availability of free healthcare including antihypertensive medications. Our study aims to develop and test strategies to close the HTN care gap in PLWH, through integration into HIV care, leveraging the successful national HIV care and treatment program and strategies. Methods: The InterCARE trial is a cluster randomized controlled hybrid type 2 effectiveness-implementation trial at 14 sites designed to enroll 4652 adults living with HIV and HTN plus up to 2326 treatment partners. Primary outcomes included effectiveness (HTN control) and implementation outcomes using the Reach Effectiveness Adoption Implementation and Maintenance framework, with explanatory mixed methods used to understand variability in outcomes. InterCARE trial’s main strategies include healthcare worker HTN and CVD care training plus long-term practice facilitation, electronic health record (EHR) documentation of key indicators and use of reminders, and use of treatment partners to provide social support to people living with HIV and HTN. InterCARE started with formative research to identify contextual factors influencing care gaps using the Consolidated Framework for Implementation Research. Results were used to adapt initial and develop additional implementation strategies to address barriers and leverage facilitators. The package was pilot tested in two clinics, with findings used to further adapt or add strategies for the clinical trial. Discussion: If successful, the InterCARE model can be scaled up to HIV clinics nationwide to improve diagnosis, management, and support in Botswana. The trial will provide insights for scale-up of HTN integration into HIV care in the region. Trial registration: ClinicalTrials.gov reference NCT05414526. Registered 18 May 2022, https://clinicaltrials.gov/study/NCT05414526?term=NCT05414526.&rank=1

Proceedings of the 13th annual conference of INEBRIA

CITATION: Watson, R., et al. 2016. Proceedings of the 13th annual conference of INEBRIA. Addiction Science & Clinical Practice, 11:13, doi:10.1186/s13722-016-0062-9.The original publication is available at https://ascpjournal.biomedcentral.comENGLISH SUMMARY : Meeting abstracts.https://ascpjournal.biomedcentral.com/articles/10.1186/s13722-016-0062-9Publisher's versio

“People are all about appearances”: A focus group of teenagers with Moebius Syndrome

This focus group study examined the social experiences of 10 adolescents ages 12-17 with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with Moebius Syndrome, adolescents were more likely to experience bullying and social strain. Like adults, teenagers displayed resilience and communication skills. Greater public awareness is key to reducing the stigma associated with this condition, and social skills programs should be developed to support those who struggle with social functioning.Keywords: Stigma, Adolescence, Rare diseases, Moebius Syndrome, Facial paralysi