Social Participation Restrictions Research Articles

Associations between COVID-19 incidence, weight status, and social participation restrictions in the U.S.: evidence from the national population, cross-sectional study

BackgroundTo explore the associations between coronavirus infection incidence and weight status and social participation restrictions among community-dwelling adults in the United States.MethodsWe analyzed data from the 2021 National Health Interview Survey (NHIS), which included a representative sample of 29,394 individuals (Coronavirus disease 2019 (COVID-19): 3,205) and a weighted total of 252,461,316 individuals (COVID-19: 31,697,404), considering the complex sampling design used in the survey.ResultsAge, race/ethnicity, education level, family income index, body mass index (BMI), and smoking status were significantly associated with COVID-19 infection. Weight status was significantly correlated with social participation restrictions and strongly associated with COVID-19 infection, particularly among individuals who were overweight or obese.ConclusionWeight status was shown to be associated not only with social participation restrictions but also with COVID-19 infection among U.S. adults. Understanding the complex interplay between weight status, social participation, and COVID-19 is crucial for developing effective preventive measures and promoting overall well-being in the community population.

CHARACTERISTICS AND CARE EXPERIENCES OF OLDER DUAL-ENROLLEES LIVING IN AREAS WITH MEDICAID MANAGED LTSS

Abstract Medicaid-funded long-term services and supports (LTSS) are foundational in helping older dual-enrollees with disabilities remain in the community. Over the past decade, nearly half of U.S. states have transformed LTSS delivery through managed LTSS (MLTSS) with the goal of improving care coordination and avoiding unnecessary health care utilization. Despite this rapid growth, no prior studies describe whether characteristics and care experiences of older dual-enrollees differ between counties with and without MLTSS. We draw on the nationally representative 2015 National Health and Aging Trends Study (NHATS) linked to the census tract of participants’ place of residence to examine differences in demographic characteristics, health, and care experiences of older dual-enrollees with LTSS need (n=462) by county-level presence of MLTSS. We broadly defined LTSS need as receiving assistance with one or more self-care or mobility activity or having probable dementia. More than half (56.9%) of older dual-enrollees with LTSS need lived in counties with MLTSS. Hispanic/other individuals were three times more likely to live in counties with (versus without) MLTSS presence (54.2% vs. 15.8%, p<0.0001) while individuals living in rural regions less likely to live in counties with MLTSS presence (8.8% vs. 31.8%, p<0.05). There were no differences in age, gender, self-reported health, dementia status, or number of chronic conditions of the sample population by MLTSS presence. Similarly, no differences were observed in experiencing adverse consequences from unmet care needs or social participation restrictions by MLTSS presence. These results are a foundational step toward building evidence and understanding who MLTSS programs are serving.

Refinement and Validation of the Empowerment Audiology Questionnaire: Rasch Analysis and Traditional Psychometric Evaluation.

Empowerment is the process through which individuals with hearing-related challenges acquire and use knowledge, skills and strategies, and increase self-efficacy, participation, and control of their hearing health care, hearing solutions, and everyday lives. The aim was to refine and validate the Empowerment Audiology Questionnaire (EmpAQ), a hearing-specific measure of empowerment. This was achieved through (1) refinement via Rasch analysis (study 1), and (2) traditional psychometric analysis of the final survey structure (study 2). In study 1, 307 adult hearing aid owners completed the initial empowerment measure (33 items) online. To inform an intended item reduction, Rasch analysis was used to assess a range of psychometric properties for individual items. The psychometric properties included analysis of individual items (e.g., response dependency, fit to the polytomous Rasch model, threshold ordering) and the whole EmpAQ (e.g., dimensionality). Item reduction resulted in a 15-item version (EmpAQ-15) and a short-form 5-item version (EmpAQ-5), validated using modern (Rasch), and traditional (Classical Test Theory) psychometric analysis (study 2). In study 2, 178 adult hearing aid owners completed the EmpAQ-15 and EmpAQ-5, alongside 5 questionnaires to measure related constructs. These included two hearing-specific questionnaires (Social Participation Restrictions Questionnaire and Self-Assessment of Communication), two general health-related questionnaires (Patient Activation Measure and World Health Organization Disability Assessment Schedule 2.0), and a general empowerment questionnaire (Health Care Empowerment Questionnaire). Modern (Rasch) and traditional psychometric analysis techniques (internal consistency, construct validity, and criterion validity) were used to assess the psychometric properties of the EmpAQ-15 and EmpAQ-5. Rasch analysis of the initial 33-item measure of empowerment identified 18 items with high response dependency, poor fit to the Rasch model, and threshold disordering, which were removed, resulting in a long-form (EmpAQ-15) hearing-specific measure of empowerment. A short-form (EmpAQ-5) version was developed for use in the clinic setting. Validation of the two EmpAQ measures using Rasch analysis showed good item fit to the Rasch model, appropriate threshold targeting, and the existence of unidimensionality. Traditional psychometric evaluation showed that both questionnaires had high internal consistency and positive correlations with the hearing-specific questionnaires. However, in contrast with our hypotheses, correlations with general health questionnaires were stronger than with hearing-specific questionnaires; all questionnaires were correlated with the EmpAQ and in the direction hypothesized. Taken together, these findings support the construct validity of the EmpAQ-15 and EmpAQ-5. The EmpAQ-15 and EmpAQ-5 are the first self-report measures to be developed specifically for the measurement of empowerment. The EmpAQ-15 and EmpAQ-5 were found to meet the Rasch model criteria for interval-level measurements. Traditional psychometric evaluation supports the construct validity of both measures. The EmpAQ measures have the potential to be used in both research and clinical practice to evaluate empowerment along the hearing journey. The next stage of this research will be to further validate these measures by assessing their responsiveness, minimal clinically important difference, and clinical interpretability in a clinical population.

Cross-Cultural Adaptation and Psychometric Evaluation of the Persian Version of Hearing Handicap Questionnaire for the Elderly

Background and Aim: Hearing handicap, as one of the common health problems among older people, affects life activities. The Hearing Handicap Questionnaire (HHQ) is one of the scales that provide criteria for social withdrawal, participation restriction, and emotional distress. The present study aims to translate the HHQ into Persian and determine its psychometric properties.
 Methods: After translation into Persian, the content validity of the questionnaire was determined based on the Lawashe’s method. Then, the Persian HHQ (P-HHQ) and the Persian Hearing Handicap Inventory for Elderly-Screening version (P-HHIE-S) were completed by 110 hearing-impaired seniors (49 females) over 60 years. The concurrent validity was determined by Spearman correlation test, and the discriminant validity was analyzed by Kruskal-Wallis test and independent t-test. The test-retest reliability was assessed in 47 subjects after two weeks by Spearman correlation test and paired t-test.
 Results: The P-HHQ had high face validity. The mean total score of P-HHQ was 1.89±1.05. It had a significant positive correlation with the score of P-HHIE-S (r=0.87) and pure tone average of the better ear (r=0.72). There was a significant difference between three groups of elderly with different degrees of hearing impairment (p<0.001). Cronbach’s α values were in the range of 0.94–0.97. There was a strong correlation between test and retest scores of P-HHQ (r=0.97) which indicates a high test-retest reliability.
 Conclusion: The P-HHQ has acceptable validity and reliability and can be used as a suitable instrument to evaluate hearing handicap of the elderly in research studies and clinical settings.
 
 Keywords: Elderly; handicap; hearing handicap questionnaire; presbycusis; self-report

Gender-Affirming Voice Training for Trans Women: Effectiveness of Training on Patient-Reported Outcomes and Listener Perceptions of Voice.

Although speech-language pathologists have provided gender-affirming voice training for trans women since the 1970s, evidence for this training's effectiveness remains weak. Our study aimed to redress limitations of earlier studies and evaluate voice training effects on outcomes important to trans women. Seventy-four trans women (19-54 years old) who wanted a more female-sounding voice were recruited through two health facilities and provided with an eight- to 12-session voice training program based on contemporary literature, usual clinical practice, and client-centered care principles. Self-reported outcomes and an audio-recorded reading sample were collected 3 months before, immediately before and after, and 3 months after training. Forty cisgender speakers were audio-recorded reading the same sample material as comparison voices. Seventy-nine naive listeners made gender-related voice ratings of an extract from these audio recordings. Training effectiveness was evaluated using group-level analyses (linear mixed-effects models) and individual-level analyses to establish what proportion of participants improved to a predetermined relevant degree. Group-level analyses demonstrated positive training effects, maintained 3 months posttraining, for trans women's vocal satisfaction, perceptions of voice-related social participation, and self- and listener perceptions of their voices. Individual-level analyses also demonstrated positive effects. Two thirds of trans women increased vocal satisfaction to a relevant degree, one third who reported restricted social participation before training reduced this restriction to a relevant degree, and all were rated more female-sounding after training (although not all to a relevant degree). All trans women participants made progress toward their voice goals and maintained those gains at follow-up. These findings provide evidence that gender-affirming speech-language pathology services warrant prioritization. Further research is warranted to investigate factors predicting outcomes of voice training for trans women.

Impact and experiences of vestibular disorders and psychological distress: Qualitative findings from patients, family membersand healthcare professionals.

People with vestibular disorders frequently experience reduced quality of life and challenges with activities of daily living. Anxiety, depressionand cognitive problems often co-present with vestibular disorders and can aggravate symptoms and prolong clinical recovery. We aimed to gain in-depth insights into the impact of vestibular disordersand the contribution of psychological factors by exploring multistakeholder perspectives. Semistructured interviews were conducted between October 2021 and March 2022 with 47participants in the United Kingdom including: 20 patients (age M = 50.45 ± 13.75; 15 females), nine family members (age M = 61.0 ± 14.10; four females),and 18 healthcare professionals. Data were analysed using framework analysis. Vestibular disorders impact diverse aspects of patients'lives including work, household chores, socialising,and relationships with family and friends. Being unable to engage in valued activities or fulfil social roles contributes to feelings of grief and frustration, affecting identity, confidence,and autonomy. Anxiety and low mood contribute to negative thought processes, avoidance,and social withdrawal, which can impede clinical recovery through reduced activity levels, and end engagement with treatment. Coping strategies were thought to help empower patients to self-manage their symptoms and regain a sense of control, but these require oversight from healthcare providers. Daily activity limitations, social participation restrictions,and psychological distress can interact to impact quality of life, sense of self,and clinical recovery amongst people with vestibular disorders. Information and resources could aid societal awareness of the impact of vestibular disorders and help patients and families feel understood. An individualised and comprehensive approach that concurrently addresses mental, physical, social,and occupational needs is likely to be beneficial. Two group meetings were held at the beginning and end of the study with a patient and public involvement network formed of people with vestibular disorders and family members. These individuals commented on the study aims, interview schedule, participant recruitment practices,and interpretation of the themes identified. Two core patient members were involved at all stages of the research. These individuals contributed to the formulation of the interview schedule, development and application of the coding scheme, development and interpretation of themes,and preparation of the final manuscript.

Predictors of the Social Participation of Adults with Down Syndrome: An Analysis Based on the Biopsychosocial Model of the International Classification of Functioning, Disability, and Health.

The aim of the study is to identify the predictors of social participation in Down syndrome adults from the biopsychosocial model of the International Classification of Functioning, Disability, and Health. An exploratory, analytical, cross-sectional study was conducted with Down syndrome adults. The social participation was assessed using the Life Habits Assessment. The independent variables were determined using the International Classification of Functioning, Disability, and Health biopsychosocial model: body functions were assessed by body mass index, cognition function (Mini-Mental State Examination), and lower limbs muscle strength (Sit-to-Stand Test). Activities were assessed by the 8-Foot Up and Go Test. Environmental factors were assessed by the measure of the quality of the environment, and personal factors were assessed by age, sex, and education level. The total Life Habits Assessment score indicates that individuals show moderate restriction in social participation, with major restriction in the education, employment, and responsibilities domains. The 8-Foot Up and Go Test was the best social participation predictor variable, followed by Mini-Mental State Examination, and the Sit-to-Stand Test. Contextual factors were not predictors of participation. It was concluded that individuals with Down syndrome present the most restrictions to social participation in activities that involve social roles. The predictors influencing social participation are functional mobility, cognition, and lower limb muscle strength.

Association of hearing impairment with social participation restriction and depression: comparison between midlife and older adults

Objectives This study examined the association between hearing impairment and depression, focusing on the role of restricted social engagement as a mediator and whether the mediating relationship differed between midlife individuals (45–64) and older adults (65+). Methods Individuals aged 45 and older from the cross-sectional National Health and Nutrition Examination Survey 2017–2018 were analyzed (N = 3,020). A multiple-group path analysis was conducted to compare midlife individuals (n = 1,774) and older adults (n = 1,246). Results The results indicated that among U.S. adults aged 45 or older, 12.3% reported having serious difficulty hearing (21.2% among older adults vs. 7.4% among midlife adults). In both age groups, significant direct relationship between hearing impairment and depression, as well as indirect relationship via social participation restriction, were found. However, a significant difference was found in the relationship between restricted social participation and depression by age group (i.e. moderated mediation): The coefficient was greater among midlife adults than among older adults (Δbmidlife-older=1.109–0.383 = 0.726, p<.001). Conclusion These findings highlight that adverse psychosocial effects of hearing impairment are also an important concern for midlife adults. As the importance of social engagement was greater among midlife adults with hearing impairment, age-specific interventions should be adopted to reduce depression associated with hearing impairment.

RESILIENCE VS. DISABILITY: EFFECTIVE COPING APPROACHES IN THE CONTEXT OF A FAMILY CRISIS

Disability represents a complex condition involving physical, intellectual, or sensory limitations, resulting in significant restrictions in daily activities and social participation. Adapting to the needs of a child with disabilities involves additional financial resources, amplifying financial pressures and uncertainty about the family's economic stability. Besides the consequences at the family level, society as a whole experience the repercussions of this issue. Stigmatization and marginalization of children with disabilities and their families constitute an unacceptable reality, generating exclusivity and social inequities. In this article, I intended to detail the coping strategies of families facing a crisis related to their child's disability. The exploratory research (conducted within a master's thesis) was carried out on a sample of 10 parents whose children receive free services at a Day Center in Iasi. The results of this preliminary research offer a significant perspective on the coping methods of families facing their child's disability and familial crisis. These findings can serve as a solid foundation for the development of larger-scale studies that contribute to identifying effective intervention strategies and tailored support for the specific needs of these vulnerable families.

Subjective Memory Complaints Predict Decline in Memory, Instrumental Activities of Daily Living, and Social Participation in Older Adults: A Fixed-Effects Model.

Although subjective memory complaints (SMCs) have been suggested to be associated with future memory impairment, limitations in instrumental activities of daily living (IADLs), and social participation restriction, these associations are still inconclusive. To determine whether changes in SMCs over time predict decline in memory, IADLs, and social participation in older adults. Longitudinal study. Community. Sample 1 included 2,493 community-dwelling older adults drawn from the Health and Retirement Study (HRS) data collected between 2004 and 2018. Sample 2 included 1,644 community-dwelling older adults drawn from the HRS data collected between 2008 and 2018. Self-reported SMCs, memory function, self-reported IADL performance, and self-reported social participation. The mean age of Sample 1 at baseline was 70.16 yr; 1,468 (58.88%) were female. In Sample 1, immediate and delayed memory (all ps < .001) and IADL performance (p < .01) declined over time. Increases in SMCs over time significantly predicted future immediate and delayed memory declines (p < .01 and p < .001, respectively) and future IADL performance decline (p < .001), after controlling for depressive symptoms. The mean age of Sample 2 at baseline was 71.52 yr; 928 (56.45%) were female. In Sample 2, social participation declined over time (all ps < .001). Increases in SMCs over time significantly predicted future social participation decline (p < .05), after controlling for depressive symptoms. Increases in SMCs predict future decline in memory, IADL performance, and social participation after accounting for depressive symptoms. What This Article Adds: SMCs can be used as an early indicator of future memory impairment, IADL limitations, and social participation restrictions in older adults. Furthermore, interventions that minimize SMCs may help older adults achieve successful aging.

Predictors of not maintaining regular medical follow-up after stroke

BackgroundRegular medical follow-up after stroke is important to reduce the risk of post-stroke complications and hospital readmission. Little is known about the factors associated with stroke survivors not maintaining regular medical follow-up. We sought to quantify the prevalence and predictors of stroke survivors not maintaining regular medical follow-up over time.MethodsWe conducted a retrospective cohort study of stroke survivors in the National Health and Aging Trends Study (2011–2018), a national longitudinal sample of United States Medicare beneficiaries. Our primary outcome was not maintaining regular medical follow-up. We performed a cox regression to estimate predictors of not maintaining regular medical follow-up.ResultsThere were 1330 stroke survivors included, 150 of whom (11.3%) did not maintain regular medical follow-up. Stroke survivor characteristics associated with not maintaining regular medical follow-up included not having restrictions in social activities (HR 0.64, 95% CI 0.41, 1.01 for having restrictions in social activities compared to not having restrictions in social activities), greater limitations in self-care activities (HR 1.13, 95% CI 1.03, 1.23), and probable dementia (HR 2.23, 95% CI 1.42, 3.49 compared to no dementia).ConclusionsThe majority of stroke survivors maintain regular medical follow-up over time. Strategies to retain stroke survivors in regular medical follow-up should be directed towards stroke survivors who do not have restrictions in social activity participation, those with greater limitations in self-care activities, and those with probable dementia.

Neighborhood safety, fall indices, physical activity level and social participation restrictions from a population of community-dwelling older adults in Nsukka, Enugu State, Nigeria

BackgroundRestriction in physical activity (PA) and social participation restriction (PR) can be heightened in the presence of fear of fall (FOF), fall experience, and perceived unsafe neighborhood, particularly among older adults. Despite the enormous benefits of social participation and physical activity, many older adults remain vulnerable to participation restriction and this probably accounts for a significant proportion of health challenges for older adults.ObjectiveThis study investigated the relationship between neighborhood safety (NS), fall indices, physical activity, and social participation restriction among older adults from selected communities in Nsukka, Enugu state, Nigeria.MethodsThis was a cross-sectional survey of 170 recruited via consecutive non-probability sampling techniques. Socio-demographic variables, co-morbidities, and fall prevalence were obtained using a self-administered questionnaire. The study instruments include the PA neighborhood environment scale – Nigeria (PANES-N), PA scale for elderly (PASE), Participation scale (PS), Modified fall efficacy scale (MFES), and Fall risk assessment tool (FRAT) and fall indices.Statistical analysisDescriptive statistics of mean and standard deviations, frequency counts, and percentages were used to analyze the socio-demographic variables, and Inferential statistics of Spearman rank order correlation were used to determine the relationship among the neighborhood safety, fall indices, physical activity level, and participation restrictions.ResultsPR has a negative relationship with NS (r = -0.19, p- 0.01), and fall efficacy (r = -0.52, p- 0.001). However, PR has a positive relationship with fall risk (r = 0.36, p = 0.001).ConclusionParticipation restriction is negatively correlated with neighborhood safety, fall efficacy, and PA. The PR has a positive relationship with fall risk (FR).

P041 Living with foot and ankle disorders in rheumatic and musculoskeletal diseases: a thematic synthesis of qualitative studies to inform the work of the Outcome Measures in Rheumatology (OMERACT) Foot and Ankle Working Group

Abstract Background/Aims Foot and ankle involvement is common in rheumatic and musculoskeletal diseases (RMDs), but high-quality evidence is lacking to determine the effectiveness of foot and ankle treatments. Heterogeneity in the outcomes used across clinical trials in this area hinders the ability to compare study findings, and some outcomes are not always meaningful to patients. This study aimed to determine what outcomes are important to patients by exploring and synthesising qualitative data relating to the symptoms and impact of living with foot and ankle disorders in RMDs. Methods Six databases (CINAHL; Ovid Embase; Ovid MEDLINE; Psycinfo; Cochrane Database of Systematic Reviews; CENTRAL) were searched from inception to March 2022. Qualitative interview or focus group studies published in English and involving participants living with foot or ankle disorders in RMDs (inflammatory arthritis, osteoarthritis, crystal arthropathies, connective tissue diseases, and musculoskeletal conditions in the absence of systemic disease) were included. Quality was assessed using the Critical Appraisal Skills Programme qualitative tool. All data from the results section of included studies were extracted, coded and synthesised to develop themes. Patient and public involvement contributors were involved throughout the review, from design of the study to interpretation of the results and discussions about the findings. Results Of 1,440 database records screened, 34 studies were included, with a total of 581 participants. Studies focused on living with foot or ankle disorders in rheumatoid arthritis (n = 18), osteoarthritis (n = 5), gout (n = 3), psoriatic arthritis (n = 1), lupus (n = 1), posterior tibial tendon dysfunction (n = 1), plantar heel pain (n = 1), Achilles tendonitis (n = 1), and mixed population (n = 3) patients. Six themes were generated from the thematic synthesis: pain, change in appearance, activity limitations, social isolation, limited work ability and emotional impact. Foot or ankle pain was the predominant symptom experienced by patients in all included studies and was closely linked to other themes. Both pain and change in appearance of the feet or ankles (deformity), and subsequent limitations in footwear and clothing choices, led to restrictions in physical activities, social participation and work. Emotional distress, including anxiety, anger and embarrassment, was common among patients with foot and ankle disorders across all of the RMDs explored in this review. Conclusion This is the first study to synthesise findings of qualitative research exploring the lived experience of patients with foot and ankle disorders in RMDs. Findings indicate that these disorders impact on multiple areas of patients’ lives, both physically and psychologically. Patients’ experiences of foot and ankle disorders are similar across different RMDs, although there are a limited number of qualitative studies focusing on conditions other than rheumatoid arthritis. These findings will inform a future consensus study prioritising the outcomes that should be measured in future research studies and clinical practice. Disclosure L.S. Chapman: None. C. Flurey: None. A.C. Redmond: None. P. Richards: None. C. Hofstetter: None. B. Tapster: None. J. Emmel: None. P.S. Helliwell: None. H.B. Menz: None. M.T. Hannan: None. B. Shea: None. H.J. Siddle: None.

A qualitative exploration of Chinese rural older adults’ adaption experience to disability in Henan Province

BackgroundThe global population is ageing in a serious way and the number of disabled elderly people is increasing. Disability is a combination of physical and functional impairments, activity limitations, and social participation restrictions that significantly affect the quality of life of older adults. This study used the Roy adaptation model to examine the adaptive strategies of rural disabled elderly.MethodsAn interview outline was prepared based on the Roy Adaptation Model, in-depth interviews were conducted with eligible rural elderly with disabilities using purposive sampling. Interview data were analyzed using the colaizzi method to obtain relevant themes and sub-themes of the adaptation experience.ResultsFifteen eligible disabled elderly participated in the interview, with an average age of 73.7 years old, showing different adaptation experiences in different aspects, a total of 5 themes and 18 sub-themes were extracted: (a)physiological function adaptation: learning to monitor physiological indicators, active medical compliance behavior, active rehabilitation exercise, adjusting lifestyle and coping with failure, (b) self-concept adaptation: adjustment of gratitude mentality, self-consolation, transferring the attention, seeking emotional comfort, and negative emotional response, (c) role function adaptation: positive self-care role, negative family role and escape of social role, (d) interdependence adaptation: actively seeking support and complex social coping, and (e) adaptation influencing factors: personal factors, caregiver factors and the policy factors.ConclusionsThe disabled elderly show different adaptation strategies in four ways, and are affected by personal factors, caregiver factors and policy factors. A multi-faceted support system for the disabled elderly is recommended, and the caregivers should be trained in all-round care knowledge and skills.

'Thinking about myself?' Experiences of parents of adolescents with cerebral palsy: A qualitative study to guide the implementation of a service for families.

Recently, there has been an increase in the development of transition services for adolescents with cerebral palsy (CP). Studies have emphasized the importance of addressing parents' needs during their children's adolescence. This study aimed to understand how parents experience the adolescence and transition to adulthood of their adolescents with CP and to identify relevant components for the development of a service for families. A qualitative study was conducted with 18 families of adolescents with CP. Caregivers were purposely recruited from a transition programme called Adolescence in Focus Program. Individual interviews were conducted using a semistructured script. Then, the caregivers were invited to participate in focus groups. The interviews and focus groups were recorded and transcribed for content analysis. Three categories emerged: 'The onset of adolescence', 'What will our future be?' and 'Support and services: paths to follow'. The adolescents' behavioural changes seemed to be intensified by their restricted social participation. Parents reported the desire for their adolescents to become independent in daily activities. Regarding their own future, they aimed to re-establish the occupational roles that were interrupted. Information from this study guided the design of a programme for families regarding content, format and outcomes.

A qualitative study of the sources of chronic obstructive pulmonary disease-related emotional distress.

The aim of this study is to identify the sources of illness-related emotional distress from the perspective of individuals living with mild to severe chronic obstructive pulmonary disease (COPD). A qualitative study design with purposive sampling was applied at a Swiss University Hospital. Eleven interviews were conducted with individuals who suffered from COPD. To analyze data, framework analysis was used, guided by the recently presented model of illness-related emotional distress. Six main sources for COPD-related emotional distress were identified: physical symptoms, treatment, restricted mobility, restricted social participation, unpredictability of disease course and COPD as stigmatizing disease. Additionally, life events, multimorbidity and living situation were found to be sources of non-COPD-related distress. Negative emotions ranged from anger, sadness, and frustration to desperation giving rise to the desire to die. Although most patients experience emotional distress regardless of the severity of COPD, the sources of distress appear to have an individual manifestation. There is a need for a careful assessment of emotional distress among patients with COPD at all stages of the disease to provide patient-tailored interventions.

The clicking sound after mechanical heart valve replacement: Can it hinder the level of physical activity in patient? - A case report.

The audible closure of the replaced mechanical heart valve, called ‘clicking sound’ has impact on the sleep and quality of life. We present a case of a 25-year-old male who reported five months after his mitral valve replacement, with restriction in physical activity, social and occupational participation due to disturbance caused by the constant clicking sound of the valve. Cardiac rehabilitation was implemented for four weeks. All the exercises were performed with the patient perceiving and understanding the safety of the clicking of valve to alleviate his fear. Correct patient education regarding clicking of replaced valve not only regained confidence, physical activity levels but also helped him to restart his job within four weeks of physiotherapy rehabilitation. Hence the impact of this study is that, the continuous valve noise though healthy can be a hinderance to physical activity levels and should not be underestimated.

Social Network Characteristics and Correlations With Cognitive, Psychosocial, and Speech Function and Communication Participation for Adults With Multiple Sclerosis: A Pilot Study.

This cross-sectional observational pilot study investigated egocentric social networks for 10 paired sex- and age-matched adults with and without multiple sclerosis (MS). This study also investigated the relationship between social network measures and various disease factors associated with MS. The relationship between social network measures and communication participation restrictions was also examined. Participants completed a seven-item social network survey. Social network structure and composition were quantified. The network organization measures (structure analysis) included the total number of members (network size) and extent to which members are connected (network density). The measured characteristics of people around a participant (composition analysis) included the amount of kin relative to network size (proportion of kin), gender variation (gender diversity index), and age variation (standard deviation of age). Standard clinical neuropsychological, psychosocial, and speech metrics quantified processing speed, memory, depression, fatigue, and sentence intelligibility. Measures of communication participation and MS severity were also obtained. Matched-pairs tests indicated that the proportion of kin significantly differed between paired participants, whereas all other social network measures were similar. For participants with MS, correlation analyses indicated weak associations between proportion of kin and cognitive, psychosocial, and speech measures. However, strong correlations were found between social network size and processing speed, memory, fatigue, MS severity, and communication participation. Gender diversity index also strongly correlated with depression. Results from this pilot study highlight the importance of evaluating egocentric networks in the clinical management of MS, as maintaining nonkin friendships may be difficult for adults with MS making them vulnerable to social isolation. Furthermore, those with small and less diverse networks may experience more severe cognitive and psychosocial problems and limited communication participation.

Long-term outcomes for females with early-onset dystrophinopathy.

To study long-term disease course for females with early-onset dystrophinopathy, including common (female) symptoms, challenges in social participation, the need for care, and current healthcare management to support guideline development. Twelve females with early-onset dystrophinopathy were followed for a median period of more than 17 years (range 1-36). One patient died owing to end-stage cardiac failure. Cardiac abnormalities were observed in three of the remaining 11 participants. Respiratory function was reduced in seven of 10 participants. Fatigue, myalgia, lower back pain, and arthralgia were reported in more than six of the participants. Functional status varied from exercise intolerance to wheelchair dependency. Most or all of the 10 participants reported restrictions in participation in work (n=10), household duties (n=10), sports (n=9), and education (n=8). Only a few participants received followed-up pulmonary (n=2) or rehabilitation (n=3) care. Females with early-onset dystrophinopathy experience a wide range of impairments, comorbidities, limitations in activities, and restrictions in social participation. The whole spectrum should be acknowledged in the healthcare setting. Neuromuscular and cardiac follow-up are indispensable. Additional respiratory assessment and rehabilitation care are expected to improve health status and support daily activities and participation. No standard diagnostic procedures seem to exist for female patients suspected for dystrophinopathy. Female participants with early-onset dystrophinopathy experienced a broad scope of burdening symptoms, such as fatigue, myalgia, lower back pain, and arthralgia. None of participants worked full time, all felt restricted in paid work, and most felt restricted in education. Most participants showed decreased lung function, while only one was symptomatic. Availability of rehabilitation care may improve support for daily activities and participation for females with early-onset dystrophinopathy.

NOVEL APPROACHES TO MINIMIZE SOCIAL ISOLATION AND MAXIMIZE PARTICIPATION IN OLDER ADULTS WITH DEMENTIA

Abstract Older adults experiencing cognitive decline, including those with Alzheimer’s disease and related dementias, are at-risk for social isolation and participation restrictions, especially given the COVID-19 pandemic. Previously examined research has primarily focused on reducing problematic behaviors and remediating cognition for individuals with cognitive impairments. In this symposium, we will discuss novel intervention approaches and under-studied aspects of lifestyle behaviors that minimize social isolation and maximize participation for older adults with Alzheimer’s disease and related dementias. Information presented in this symposium is intended to inform future intervention research to achieve an optimal quality of life for those with cognitive impairments. The first presentation will describe an analysis of lifestyle behaviors and cognition in an older population. The second presentation will discuss the development of an intergenerational, active music intervention that is delivered virtually to individuals with dementia and their caregivers. The third presentation will describe the effects of an adaptive horseback riding program that is becoming increasingly prevalent and improves the quality of life of persons living with Alzheimer’s disease and related dementia.