Development of a resilience item bank and short forms.

PURPOSE: The purpose of this study was to develop a publicly available, psychometrically sound item bank and short forms for measuring resilience in any population, but especially resilience in individuals with chronic medical conditions or long-term disability. RESEARCH METHODS: A panel of 9 experts including disability researchers, clinical psychologists, and health outcomes researchers developed a definition of resilience that guided item development. The rigorous methodology used focus groups, cognitive interviews, and modern psychometric theory quantitative methods, including item response theory (IRT). Items were administered to a sample of people with chronic medical conditions commonly associated with disability (N = 1,457) and to a general population sample (N = 300) representative of the Unites States general population with respect to age, gender, race, and ethnicity. RESULTS: The final item bank includes 28 items calibrated to IRT with the scores on a T-metric. A mean of 50 represents the mean resilience in the general population sample. Four and eight item short forms are available, and their scores are highly correlated with the item bank score (r ≥ .94). Reliability is excellent across most of the resilience continuum. Initial analyses provide strong support for validity of the score. CONCLUSIONS: The findings support reliability and validity of the University of Washington Resilience Scale (UWRS) for assessing resilience in any population, including individuals with chronic health conditions or disabilities. It can be administered using computerized adaptive testing or by short forms. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Adapting to Multiple Sclerosis Stigma Across the Life Span.

BACKGROUND: Most people with multiple sclerosis (MS) experience social stigma at mild-to-moderate levels, with potential implications for their health. However, little is known about how adults adapt to social stigma across their lives, or with respect to MS stigma in particular. Using a large national database and controlling for confounding demographic and health-related variables, this study examined whether longer MS duration was associated with reports of stigma in people with MS. METHODS: Data were available from 6771 participants enrolled in the semiannual survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). Participants completed measures of MS stigma and reported on demographic and health-related covariates. RESULTS: With disability level, age, and other demographic and health-related covariates taken into account, the longer respondents had lived with MS, the less stigma they felt. Results were similar for people's anticipation of stigma and their feelings of isolation because of stigma. CONCLUSIONS: As people gain experience living with MS, their adaptations to the social aspects of their illness may allow them to structure their lives so that they can mitigate the impact of stigma. Doctors, therapists, and other health care personnel should consider that patients with MS might be especially concerned and distressed by stigma earlier in the course of their illness.

Including the blind community in precision medicine research: findings from a national survey and recommendations.

PURPOSE: Despite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision ("the blind community") in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation. METHODS: An online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants. RESULTS: Two hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3-6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers. CONCLUSION: Removing the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.

Instilling positive beliefs about disabilities: pilot testing a novel experiential learning activity for rehabilitation students.

PURPOSE: To develop and test a novel impairment simulation activity to teach beginning rehabilitation students how people adapt to physical impairments. METHODS: Masters of Occupational Therapy students (n = 14) and Doctor of Physical Therapy students (n = 18) completed the study during the first month of their program. Students were randomized to the experimental or control learning activity. Experimental students learned to perform simple tasks while simulating paraplegia and hemiplegia. Control students viewed videos of others completing tasks with these impairments. Before and after the learning activities, all students estimated average self-perceived health, life satisfaction, and depression ratings among people with paraplegia and hemiplegia. RESULTS: Experimental students increased their estimates of self-perceived health, and decreased their estimates of depression rates, among people with paraplegia and hemiplegia after the learning activity. The control activity had no effect on these estimates. CONCLUSIONS: Impairment simulation can be an effective way to teach rehabilitation students about the adaptations that people make to physical impairments. Positive impairment simulations should allow students to experience success in completing activities of daily living with impairments. Impairment simulation is complementary to other pedagogical methods, such as simulated clinical encounters using standardized patients. Implication of Rehabilitation It is important for rehabilitation students to learn how people live well with disabilities. Impairment simulations can improve students' assessments of quality of life with disabilities. To be beneficial, impairment simulations must include guided exposure to effective methods for completing daily tasks with disabilities.

Solace in solidarity: Disability friendship networks buffer well-being.

PURPOSE/OBJECTIVE: To determine whether having friends who share one's disability experiences is associated with higher well-being, and whether these friendships buffer well-being from disability-related stressors. Research Method/Design: In 2 cross-sectional studies, adults with long-term physical disabilities identified close friends who shared their diagnosis. We assessed well-being as a function of the number of friends that participants identified in each group. Study 1 included 71 adults with legal blindness living in the United States, while Study 2 included 1,453 adults in the United States with either muscular dystrophy (MD), multiple sclerosis (MS), post-polio syndrome (PPS), or spinal cord injury (SCI). RESULTS: In Study 1, having more friends sharing a blindness diagnosis was associated with higher life satisfaction, even controlling for the number of friends who were not blind. In Study 2, Participants with more friends sharing their diagnosis reported higher quality of life and satisfaction with social role participation. Participants with more friends sharing their diagnosis also showed and attenuated associations between the severity of their functional impairment and their quality of life and social role satisfaction, suggesting that their friendships buffered the impact of their functional impairment on well-being. Participants reporting more friends with any physical disability showed similar benefits. CONCLUSIONS/IMPLICATIONS: Friends with disabilities can offer uniquely important informational and emotional support resources that buffer the impact of a functional impairment on well-being. Psychosocial interventions should help people with long-term disabilities build their peer support networks. (PsycINFO Database Record

Resilience and Function in Adults With Physical Disabilities: An Observational Study.

OBJECTIVES: To determine if resilience is uniquely associated with functional outcomes (satisfaction with social roles, physical functioning, and quality of life) in individuals with physical disabilities, after controlling for measures of psychological health (depression and anxiety) and symptom severity (pain, fatigue, and sleep disturbance); and to examine the potential moderating effect of sex, age, and diagnosis on the hypothesized associations between resilience and function. DESIGN: Cross-sectional survey study. SETTING: Surveys were mailed (81% response rate) to a community sample of 1949 individuals with multiple sclerosis, muscular dystrophy, postpoliomyelitis syndrome, or spinal cord injury. Participants were recruited through the Internet or print advertisement (28%), a registry of previous research participants who indicated interest in future studies (21%), a departmental registry of individuals interested in research (19%), disability-specific registries (18%), word of mouth (10%), or other sources (3%). PARTICIPANTS: Convenience sample of community-dwelling adults aging with physical disabilities (N=1574), with a mean Connor-Davidson Resilience Scale (10 items) score of 29. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient-Reported Outcomes Measurement Information System measures of Satisfaction with Social Roles and Activities and Physical Functioning, the World Health Organization's brief Older People's Quality of Life Questionnaire, and the Connor-Davidson Resilience Scale (10 items). RESULTS: After controlling for age, age squared, sex, diagnosis, psychological health, and symptom severity, resilience was significantly and positively associated with satisfaction with social roles (ß=.17, P<.001) and quality of life (ß=.39, P<.001), but not physical function (ß=.04, P>.05). For every 1-point increase in scores of resilience, there was an increase of .50 in the quality of life score and .20 in the satisfaction with social roles score. Sex also moderated the association between resilience and satisfaction with social roles (F1,1453=4.09, P=.043). CONCLUSIONS: The findings extend past research, providing further evidence indicating that resilience plays a unique role in nonphysical functional outcomes among individuals with physical disabilities.

Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis.

Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36-62 years) individuals with MS [one with men (n = 6) and one with women (n = 6)], one for partners of individuals with MS (n = 11) and one with community stakeholders serving people with MS (n = 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention. Implications for Rehabilitation Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.

Resilience predicts functional outcomes in people aging with disability: a longitudinal investigation.

OBJECTIVES: To investigate the links between resilience and depressive symptoms, social functioning, and physical functioning in people aging with disability and to investigate the effects of resilience on change in functional outcomes over time. DESIGN: Longitudinal postal survey. SETTING: Surveys were mailed to a community sample of individuals with 1 of 4 diagnoses: multiple sclerosis, muscular dystrophy, postpoliomyelitis syndrome, or spinal cord injury. The survey response rate was 91% at baseline and 86% at follow-up. PARTICIPANTS: A convenience sample of community-dwelling individuals (N=1594; age range, 20-94y) with multiple sclerosis, muscular dystrophy, postpoliomyelitis syndrome, or spinal cord injury. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient Health Questionnaire-9 (to assess depressive symptoms) and Patient Reported Outcomes Measurement Information System (to assess social role satisfaction and physical functioning). RESULTS: At baseline, resilience was negatively correlated with depressive symptoms (r=-.55) and positively correlated with social and physical functioning (r=.49 and r=.17, respectively). Controlling for baseline outcomes, greater baseline resilience predicted a decrease in depressive symptoms (partial r=-.12) and an increase in social functioning (partial r=.12) 3 years later. CONCLUSIONS: The findings are consistent with a view of resilience as a protective factor that supports optimal functioning in people aging with disability.

Stereotypes as stumbling-blocks: how coping with stereotype threat affects life outcomes for people with physical disabilities.

Stereotype threat, the concern about being judged in light of negative stereotypes, causes underperformance in evaluative situations. However, less is known about how coping with stereotypes can aggravate underperformance over time. We propose a model in which ongoing stereotype threat experiences threaten a person's sense of self-integrity, which in turn prompts defensive avoidance of stereotype-relevant situations, impeding growth, achievement, and well-being. We test this model in an important but understudied population: the physically disabled. In Study 1, blind adults reporting higher levels of stereotype threat reported lower self-integrity and well-being and were more likely to be unemployed and to report avoiding stereotype-threatening situations. In Study 2's field experiment, blind students in a compensatory skill-training program made more progress if they had completed a values-affirmation, an exercise that bolsters self-integrity. The findings suggest that stereotype threat poses a chronic threat to self-integrity and undermines life outcomes for people with disabilities.