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

Understanding Disability Self-Disclosure and the Impacts of Visibility and Discrimination

Self-disclosure is a complex process that impacts social, cultural, and individual contexts of people’s lives. Under ideal circumstances, disclosure strengthens social bonds, enhances intimacy in relationships, and fosters a more unified sense of the self. Disclosing information about a stigmatized identity, however, is associated with a variety of risks and benefits. The World Health Organization (2011) estimates that about 15% of the world’s population live with a disability, but only a fraction choose to disclose their disability-status to others. For university students, disability disclosure is often a request for accommodations. To create an environment in which students with disabilities are able to access accommodations and support, it is essential to have a more complete understanding of the factors that influence disclosure of one's disability. The present study is a secondary analysis of data collected from Bogart, Rottenstein, Lund, and Bouchard’s, (in press) study on disability self-identification. 710 participants living in the U.S. completed an online survey measuring a variety of personal (i.e., age, ethnicity, gender), impairment (i.e., duration, visibility), and environmental (i.e., social support and stigma) factors that predict disability self-identification. Participants were also asked how frequently they disclose or discuss their disorder(s) with family, friends, acquaintances, work supervisors, coworkers, and teachers or professors. The predictors of disability self-disclosure chosen for the present study included perceived discrimination and visibility of one's disability. Data analyses revealed that of the six groups participants reported disclosing to, teachers and professors were disclosed to least frequently. Both visibility and discrimination were significant predictors of overall disclosure and disclosure to teachers and professors. Perceived discrimination was a stronger predictor of disclosure to teachers and professors than it was for overall disclosure. This implies that discrimination may deter students from asking for accommodations out of fear of being stigmatized or treated differently. Future research should examine other factors that predict disclosure such as self-esteem, type and severity of disability, and age of onset. Together, these predictors can help inform disability policies in workplaces and on college campuses

Web-based sensitivity training for interacting with facial paralysis

Previous research has shown that observers tend to form inaccurate and negatively biased first impressions of people with facial paralysis (FP). It has been hypothesised that this may be ameliorated by encouraging people to focus on channels of expression other than the face. This was tested in a web-based study of 466 participants. Participants in the Trained Condition received tips for perceiving expressiveness in individuals with FP, while those in the Untrained Condition received general medical information about FP. We observed no significant differences between groups for accuracy of emotion recognition, but a significant effect of the training upon perception of emotional intensity. These results show that attending to non-facial cues may improve social perception and reduce bias

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

A systematic review of the psychosocial adjustment of children and adolescents with facial palsy: The impact of Moebius syndrome

Introduction: Facial palsy is often associated with impaired facial function and altered appearance. However, the literature with regards to the psychological adjustment of children and adolescents with facial palsy has not been systematically reviewed to date. This paper aimed to review all published research with regards to psychosocial adjustment for children and adolescents with facial palsy. Methods: MEDLINE, CINAHL, Embase, PsychInfo and AMED databases were searched and data was extracted with regards to participant characteristics, study methodology, outcome measures used, psychosocial adjustment and study quality. Results: Five studies were eligible for inclusion, all of which investigated psychosocial adjustment in participants with Moebius syndrome, a form of congenital facial palsy. Many parents reported their children to have greater social difficulties than general population norms, with difficulties potentially increasing with age. Other areas of psychosocial adjustment, including behaviour, anxiety and depression, were found to be more comparable to the general population. Discussion: Children and adolescents with Moebius syndrome may experience social difficulties. However, they also demonstrate areas of resilience. Further research including individuals with facial palsy of other aetiologies is required in order to determine the psychosocial adjustment of children and adolescents with facial palsy

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 social side of Moebius: A focus group of teenagers with Moebius Syndrome

Moebius syndrome is a rare congenital condition that results in facial paralysis. A recent study of adults with Moebius syndrome identified their social challenges and coping strategies. The present study extended previous research by examining these factors among teenagers with Moebius syndrome. The study included 10 teenagers with Moebius Syndrome and their social interaction experiences and coping strategies. The teenage participants ranged from 12-17 years old and most were Caucasian and American. The study was conducted as a focus group and they were interviewed about living with Moebius syndrome and their social interactions with people without the condition, especially in the school setting. Results were analyzed using qualitative content analysis and revealed five themes of social functioning: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness. Compensatory expressivity skills such as vocal inflection and body movements were also used by some teenagers in order to help facilitate social interactions despite their facial paralysis. There were many similarities between the teenagers in the present study and the adults in the previous study. Both reported resiliency and showing confidence, persistence, competence, and choosing to be unaffected by negative judgments of others. Many adults and teenagers dislike discussing their Moebius with close family and friends, despite having their support. This is possibly due to the internalization of the social stigma of Moebius syndrome. Adults and teenagers are very much alike in that they use the same compensatory skills to facilitate their interaction with people, and both agree that stigmatization of Moebius can be reduced by creating more awareness of Moebius in the media and social institutions. A new finding among the teenagers was their reports of having a ‘positive outlook’, believed to be a result of getting support from being involved in groups and clubs at school. Additionally, teenagers experienced social strain from family members, such as unwanted help and attention

Healthcare Access, Satisfaction, and Health‑Related Quality of Life Among Children and Adults with Rare Diseases

Background: Research in a variety of countries indicates that healthcare access and health-related quality of life are challenged among people with a variety of rare diseases (RDs). However, there has been little systematic research on the experiences of children and adults with RDs in the American healthcare system that identifies commonalities across RDs. This research aimed to: (1) Describe demographics, disease characteristics, diagnostic experiences, access to healthcare, knowledge about RDs, support from healthcare professionals, and patient satisfaction among people with RDs and their caregivers; (2) examine predictors of patient satisfaction among adults with RDs; (3) compare health-related quality of life and stigma to US population norms; 4) examine predictors of anxiety and depression among adults and children with RDs. Results: This large-scale survey included (n = 1128) adults with RD or parents or caregivers of children with RDs representing 344 different RDs. About one third of participants waited four or more years for a diagnosis and misdiagnosis was common. A subset of participants reported experiencing insurance-related delays or denials for tests, treatments, specialists, or services. Approximately half of participants felt their medical and social support was sufficient, yet less than a third had sufficient dental and psychological support. Patients were generally neither satisfied or dissatisfied with their healthcare providers. Major predictors of satisfaction were lower stigma, lower anxiety, shorter diagnostic odyssey, greater physical function, and less pain interference. Adults and children with RDs had significantly poorer health-related quality of life and stigma in all domains compared to US norms. Predictors of both anxiety and depression were greater stigma/poor peer relationships, fatigue, sleep disturbance, limited ability to participate in social roles, and unstable disease course. Conclusions: People in the U.S. with RDs have poor health-related quality of life and high stigma. These factors arerelated to patient satisfaction and healthcare access, including diagnostic delays and misdiagnosis. Advocacy work is needed in order to improve healthcare access and ultimately health-related quality of life for children and adults with RDs