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

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

Health-related quality of life among adults with diverse rare disorders

Abstract Background Twenty-five to 30 million Americans live with a rare disease (RD) and share challenges unique to RD. The majority of research on RDs has focused on etiology, treatment and care, while the limited health-related quality of life (HRQL) research has been restricted to single RDs, small samples, or non-validated measures. This study reports HRQL among adults with diverse RDs, and compares their scores to those of the U.S. population and people with common chronic health conditions. Methods We conducted a cross-sectional survey of adults living in the U.S. diagnosed with any RD. Participants were recruited through RD organizations and completed the online survey between December 2016 and May 2017 (n = 1218). HRQL was assessed using the standardized Patient-Reported Outcomes Measurement Information System (PROMIS). RDs were classified into categories defined by Orphanet. Means and 95% confidence intervals were calculated for the main sample and for RD categories and were compared to published U.S. population norms and common chronic disease norms. Intercorrelations were conducted between HRQL, demographics, and RD experiences. Results When compared to the norms for the U.S. population and for those with common chronic diseases, mean HRQL scores were significantly poorer across all six PROMIS domains for the main sample, and were usually poorer when analyzed by sub-sets of specific RD classifications. People with rare systemic and rheumatologic, neurological, and immune diseases had the poorest HRQL. Participants had poorer HRQL if they had multiple RDs, lower income, were female, or older. Having symptoms longer was associated with worse HRQL, however, having a formal diagnosis longer was associated with better HRQL. Conclusions This study is the first to examine HRQL in a large, heterogeneous sample of RDs using validated measures. There is a significant disparity in HRQL among people with RD compared to the general population and people with common chronic diseases. Poor HRQL could be attributed to challenges accessing diagnoses, medical information, treatment, psychosocial support, and coping with stigma and uncertainty. As most individuals with RDs will not be cured in their lifetimes, identifying ways to improve HRQL is crucial to patient-centered care and should be a funding priority

Benefits of support conferences for parents of and people with Moebius syndrome

Hundreds of millions of people worldwide with rare diseases face unique challenges to quality of life (QoL), including stigma and limited support. To address these concerns, many rare disease organizations offer support conferences for people to meet others with their condition. This is the first research to examine the effects of a support conference for a rare disease, Moebius syndrome (MoS), a condition characterized by impaired facial and eye movement. Parents of and adults with MoS were predicted to receive different QoL benefits from support conferences. Individuals with MoS were predicted to receive psychosocial benefits including increased social comfort, emotional and companionship support, and reduced stigma, anxiety, and depression. Parents of people with MoS were predicted to gain rare disease self-efficacy, including increased informational and instrumental support, disability self-efficacy, or perceived competence in managing a disability, and knowledge about managing their child’s MoS. Forty-seven adults with MoS and 48 parents completed an Internet-based survey 4 weeks before attending or not attending a support conference for MoS and 6 weeks after the conference. Correlational and pre–post analyses supported that adults with MoS received social comfort benefits, reduced stigma and increased perceived knowledge from support conferences, but no pre–post changes in anxiety, depression, or social support were detected. After applying a more conservative Bonferroni correction, only perceived knowledge remained significant. For parents, correlations suggested that repeated conference attendance was associated with rare disease self-efficacy and perceived knowledge, but no pre–post changes were detected. Rare disease support conferences are promising QoL interventions