Social participation in the promoting activity, independence and stability in early dementia (PrAISED), a home-based therapy intervention for people living with dementia: a realist evaluation.

BACKGROUND: Interventions promoting social activity may reduce behavioural psychological symptoms and improve quality of life in people living with dementia. This study aimed to identify social benefits for participants living with dementia in the context of Promoting Activity, Independence and Stability in Early Dementia (PrAISED), an exercise intervention programme promoting physical activity and independence in participants living with dementia in England. METHODS: This was a multi-method realist evaluation undertaking secondary analysis of data collected during the PrAISED process evaluation, including qualitative interviews with participants with dementia, caregivers and therapists, personal notes of researchers, and video recordings of therapy sessions. The study consisted of four phases: (1) Setting operational definition of social outcomes in PrAISED; (2) Developing Context, Mechanisms, Outcome (CMO) configurations; (3) Testing and refining CMOs; and (4) Synthesising definitive CMOs into a middle range theory. RESULTS: Two CMOs were identified. (1) When therapists were able to make therapy sessions engaging and had the caregivers' support, the participants experienced therapy sessions as an opportunity to achieve goals in areas they were interested in. They also found the sessions enjoyable. This all led to the participants being highly engaged in their social interactions with the therapists. (2) When the participants realised that they were gaining benefits and progress through the PrAISED intervention, such as increased balance, this boosted their confidence in physical ability. It might also reduce caregivers' risk-aversion/gatekeeping attitude, which in turn would lead to participants' increased participation in social activities. CONCLUSION: The PrAISED intervention supported social participation in participants living with dementia. Under certain circumstances, home-based therapy interventions can be beneficial for social health (regardless of physical health gains). Given the limitations of currently available outcome measures to assess social participation, qualitative methods should be used to explore social health outcomes.

Social relationships and their association with the functional capacity of older Chilean adults: longitudinal evidence.

BACKGROUND: Functional capacity is recognized as a central factor for health in old age and not all studies that seek to clarify the role of social relationships in functional capacity are conclusive. The subject has only been studied in a limited way in Latin America, a region that is aging prematurely, with evidence primarily from developed countries, which have experienced a more gradual aging of their population. This longitudinal study aimed to determine how aspects of social relationships impact the functionality of older Chileans. METHODOLOGY: We conducted a cohort study of 2,265 people aged 60 years or older who lived in the community and resided in Greater Santiago, Chile. Five aspects of social relationships were considered at baseline (participation in groups, clubs, or organizations; number of people in the household; participation in recreational activities; perception of material support, help or advice, and marital status), from which a cluster analysis by conglomerate was performed and used as the exposure of interest. Functional limitation (FL) was the dependent variable, classified as a limitation in at least 1 basic activity of daily living or 1 instrumental activity or 2 advanced activities. The control variables considered were: sex, age, educational level, multimorbidity, depression and years of follow-up. Survival analyses using a Cox proportional hazard regression and multilevel logistic regressions (person level and follow-up wave level) were performed. RESULTS: The identified clusters were four: "without social participation and does not live alone"; "without a partner and without social participation"; "no perception of support and no social participation"; "with participation, partner and perception of support". Social relationship clusters predicted FL incidence and FL reporting during follow-up. Being in the clusters "without social participation and does not live alone" and "without partner and without social participation" were risk factors for incident FL and report of FL during follow-up, compared to being in the reference cluster "with participation, partner and perception of support. CONCLUSIONS: In summary, our study showed that participating in social organizations, not living alone and having a partner are protective factors for presenting and developing functional limitation in old age for community-living Chileans in an urban area.

Gender differences in participation one year after stroke: exploring biopsychosocial predictors for women and men.

BACKGROUND: Women appear to have a higher risk for long term restrictions in participation than men. This gender difference is poorly understood, as solely biomedical factors have been examined to date. OBJECTIVES: The aims of this study are (1) to map gender differences in participation outcome one year after stroke, and (2) to identify demographic, stroke-related, or psychological predictors of participation for women and men separately. METHODS: A total of 326 patients (mean age 66.5 ± 12.4y, 35.0% women) completed the restriction and satisfaction subscales of the Utrecht Scale of Evaluation of Rehabilitation-Participation (USER-P) at one year after stroke. Bivariate and multiple linear regression analyses were performed. RESULTS: Women reported worse scores for restrictions in participation compared to men (median 75.4 versus 87.9 respectively, p = 0.001), especially in physical activities such as daytrips and going out. Satisfaction with participation was similar between women and men. Worse cognitive functioning (ß = 0.17) was associated with more restrictions in participation in men only, other predictors of restrictions in participation were similar between women and men. The presence of depressive symptoms (ß = -0.49) was associated with worse satisfaction with participation in men, whereas an increased stroke severity (ß = -0.29) and the presence of maladaptive psychological factors (ß = -0.36) were associated with worse satisfaction with participation in women. CONCLUSIONS: Women experience more restrictions in participation compared to men one year after stroke. Taking into account gender-specific predictors of participation in stroke aftercare is important, as different biopsychosocial factors contribute to problems in participation across women and men.

Development and Psychometric Evaluation of the Social Participation Questionnaire: A Methodological and Cross-Sectional Study.

PURPOSE: Social participation is vital for the health maintenance of general populations as well as the functional recovery and social ties of clinical patients. To develop a Social Participation Questionnaire (SPQ) to evaluate participation in social activities in an individual's life and to test the reliability and validity of the SPQ. DESIGN: Cross-sectional study. SETTING: Community and clinic in China. SUBJECTS: A total of 1419 healthy adults and 486 breast cancer patients. MEASURES: The initial items were developed from a theoretical framework, a literature review, and Delphi expert consultation. Item analysis, exploratory (EFA) and confirmatory factor analysis (CFA), criterion validity, construct reliability, and internal consistency reliability were performed to examine the psychometric properties of the SPQ. RESULTS: The final SPQ was comprised of 11 different types of social activities, falling under the 3 dimensions of activities of daily life, sports and entertainment activities, and social service activities. EFA explained 50.674% of the total item variance contributing to the tool. CFA showed that the SPQ fit well. The total SPQ score was significantly associated with social network, quality of life, and cognitive function (r = |.180∼.466|, P < .001). The internal consistency coefficient was acceptable (range of Cronbach's alpha, .695 to .720). CONCLUSIONS: The SPQ has robust properties, wide application, and provides a culturally relevant tool to evaluate the social participation of individuals, thus facilitating rigorous clinical and population-based research.

Advocating for transportation equity: A critical examination of paratransit service reductions in St. Louis and its impact on health and community social participation.

Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings-to work, grocery stores, or medical appointments, for example-have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.

Relationship between social participation and depressive symptoms in patients with multimorbidity: the chained mediating role of cognitive function and activities of daily living.

OBJECTIVE: The potential mechanisms linking social participation and depressive symptoms in Chinese individuals with multimorbidity are not yet fully understood. This study aims to explore how cognitive function and activities of daily living (ADLs) mediate the relationship between social participation and depressive symptoms in individuals with multimorbidity. METHODS: We selected 3782 participants with multimorbidity from the 2018 China Health and Retirement Longitudinal Study. Data related to social participation, cognitive function, ADLs, and depressive symptoms were extracted. Regression and Bootstrap analyses were used to explore the sequential mediating effects of social participation, cognitive function, ADLs, and depressive symptoms. RESULTS: (1) There was a significant correlation between social participation, cognitive function, activities of daily living, and depressive symptoms (p < 0.01). (2) Social participation directly affected depressive symptoms (ß = -0.205, p < 0.05). (3) Cognitive function (ß = -0.070, p < 0.01) and activities of daily living (ß = -0.058, p < 0.01) played separate mediating roles in the effect of social participation on depressive symptoms. (4) Cognitive function and activities of daily living had a chain-mediated role in the relationship between social participation and depressive symptoms in patients with multimorbidity (ß = -0.020, p < 0.01). CONCLUSION: A chained mediating effect was found between cognitive function, ADLs, social participation, and depressive symptoms in patients with multimorbidity. Social participation was found to improve the cognitive function of patients with multimorbidity, which in turn enhanced their daily life activities and ultimately alleviated their depressive symptoms.

Prospective Impacts of Social Participation Activities on Cognitive and Psychopathological Statuses in Community-Dwelling Older Adults.

OBJECTIVES: This study investigated the impact of social activities on cognitive functioning and psychopathological symptoms. METHODS: Participants aged 55 or older were enrolled through communities. Initial measures assessed demographic data, neuropsychological functioning, psychopathological state, and happiness. Social activities were evaluated using a modified 12-item tool, with 3-4 activities as the cutoff. Follow-up after 6-9 months included Mini-Mental State Examination (MMSE), Beck Depression Inventory - II (BDI-II), Beck Anxiety Inventory (BAI), Health Assessment Questionnaire (HAQ), and Patient Health Questionnaire-15 (PHQ-15) measurements. Predictive models for psychiatric and cognitive statuses were built using multiple linear regression, adjusting for baseline conditions. RESULTS: Initially, 516 older individuals enrolled, with 403 undergoing follow-up. During follow-up, the low participation group reported lower MMSE scores, higher BAI scores, and increased PHQ-15 risk. Negative correlations between social activity numbers and PHQ-15 results were found. Engagement in social clubs correlated positively with higher MMSE scores, while regular interactions with one's adult child(ren) were linked to decreased BAI scores. CONCLUSIONS: The quantity of social activities was associated with lower somatic distress. Social club engagement positively influenced cognition, and regular interactions with one's adult child(ren) mitigated anxiety among older individuals. CLINICAL IMPLICATIONS: Enough types of social activities, participating in social clubs, and adequate interactions with children protected against psychopathologies.

Association between the level of social participation and depressive symptoms among older Japanese adults: a cross-sectional survey.

BACKGROUND: Social participation is recommended for older adults to remain actively involved in daily life. Social participation is a broad concept, ranging from 'interacting with others without doing a specific activity with them' to 'actively contributing to society.' However, previous studies have not taken into account the components of social participation. Depressive symptoms are significant outcomes in older adults. Social participation mitigates these risks owing to its association with reduced mortality and enhanced quality of life. This study aimed to examine the association between the level of social participation and depressive symptoms in community-dwelling older adults. METHODS: We included 17 040 individuals aged ≥65 years. Social participation was categorised into Level 3, interacting with others without doing a specific activity with them; Level 4, engaging in an activity with others; Level 5, helping others; and Level 6, contributing to society, based on a previous study by Levasseur et al. Depressive symptoms were assessed using the 15-item Geriatric Depression Scale. Logistic regression models were used to examine the association between the level of social participation and depressive symptoms. RESULTS: Overall, 15 069 older adults met the inclusion criteria. A higher level of social participation was associated with lower odds ratios (ORs) for depressive symptoms (Level 6 = OR: 0.43, 95% confidence interval (CI): 0.37-0.50; Level 5 = OR: 0.50, 95% CI: 0.41-0.60; and Level 4 = OR: 0.60, 95% CI: 0.52-0.69). Subgroup analyses based on age and sex yielded similar results across all participants. CONCLUSIONS: Among older adults in Japan, a higher level of social participation was associated with lower rates of depressive symptoms. The relationship between depressive symptoms and the levels of social participation may help develop measures to reduce or prevent depressive symptoms in older adults.

Relationship between social participation, children's support, and social frailty with falls among older adults in Colombia.

Background: There is limited research on social factors related to falls among older adults. This study assessed the association between falls during the past year with social participation, children's support, relationship with children, and social frailty. Methods: Participants were 17,687 community-dwelling older adults from the SABE (Health, Well-being, and Aging, 2015) Colombia survey. Covariates included sociodemographic characteristics, environmental barriers, psychotropic intake, vision problems, memory loss, multimorbidity, and fear of falling. Results: In multivariate logistic regression analyses, being socially frail (vs. no-frail) was associated with higher odds of falls (OR=1.20; 95% confidence interval [CI], 1.10-1.32). Participating in groups (OR=1.07; 95% CI, 1.03-1.11), helping others (OR=1.04; 95% CI, 1.02-1.06), or volunteering (OR=1.09; 95% CI, 1.01-1.17) were also associated with higher odds of falls. These findings were partly explained because most group participants reside in cities where they are more exposed to environmental barriers. In contrast, receiving help, affection, and company from children (OR=0.95; 95% CI, 0.93-0.97) was associated with lower fall odds than not receiving it. Moreover, having a good relationship with children was associated with lower odds of falls (OR=0.75; 95% CI, 0.66-0.85) compared to an unsatisfactory relationship. Conclusion: Support from children and having a good relationship with them were associated with fewer falls; however, social frailty and participation in social groups were associated with more falls.

Social Participation and Loneliness in Older Adults in a Rural Australian Context: Individual and Organizational Perspectives.

A rise in aging populations globally calls attention to factors that influence the well-being and health of older adults, including social participation. In Australia, rural older adults face cultural, social, and physical challenges that place them at risk for isolation. Thus, research surrounding social participation and healthy aging is increasingly relevant, especially in rural areas. This qualitative study in a remote town in Western Australia explores barriers and facilitators to older adults' social participation. To investigate multiple perspectives, 23 adults aged 50+ and 19 organizations from a rural town were interviewed. A stakeholder reference group was engaged to refine the research design and validate the findings. Feedback from early interviews was used to refine the data collection process, thus enhancing the validity of the findings. Thematic analysis showed that health and mobility issues, inadequate infrastructure, poor sustainability, and cultural tensions commonly impacted social participation. Themes of rural town culture, cultural power dynamics, and rural stoicism were identified as cultural aspects that inhibited participation. Based on results of this study and the supporting literature, recommendations for inclusive activities include supporting community-designed programs, utilizing culturally sensitive language and personnel, expanding services using existing community resources, and diversifying older adults' roles in existing groups.

Cultural Adaptation and Validation of a Malay Version of the Craig Hospital Inventory of Environmental Factors (CHIEF) Among Older Adults in Malaysia.

BACKGROUND/AIM: The Craig Hospital Inventory of Environmental Factors (CHIEF) is a tool designed to assess and quantify the impact of environmental factors on an individual's functioning and social participation. In this study, we aim to culturally adapt the CHIEF from its original English version into the Malay language (M-CHIEF) and examine its validity and reliability among older adults in Malaysia. METHODS: The original CHIEF was cross-culturally adapted into the Malay language following the published guidelines on cross-cultural adaptation of health questionnaires. Its content and convergent validity were assessed using the content validity index and correlation with participants' gait speed, respectively. The reliability of M-CHIEF was assessed for its internal consistency using Cronbach's coefficient alpha and Cohen's kappa and its test-retest reliability was assessed using intraclass correlation coefficients (ICCs). RESULTS: The M-CHIEF was rated with excellent content validity with a scale-level content validity index (S-CVI) of 0.86. Its internal consistency was demonstrated to be high with Cronbach's alpha of 0.84. The test-retest reliability at a two-week interval showed a stable score of the M-CHIEF and its subscales with an ICC value of 0.89. CONCLUSIONS: The M-CHIEF is deemed relevant for use among Malay speakers. It can function as an instrument to quantify the environmental barriers of an individual while considering broad environmental factors including policy, physical/ structural, work/school, attitude/support, and services/assistance.

Correlates of Quality of Life in Autistic Individuals.

Background: Quality of life is an important outcome to autistic individuals. However, the correlates of quality of life in this population are not well known. The purpose of this project was to investigate the extent to which employment, depression, anxiety, and social participation were associated with quality of life in autistic individuals. We also explored potential associations between emotion dysregulation and quality of life. Method: Baseline data from two randomized control trials were used for analysis. A total of 125 autistic adolescents and adults aged 16-45 (M = 25.40) participated. Linear regression models were constructed to investigate whether employment, depression, anxiety, and social participation were associated with five domains of quality of life: overall, physical health, psychological, social relationships, and environment. Additional linear regression models explored whether emotion dysregulation was associated with the same quality of life domains. Results: Surprisingly, employment was not significantly associated with any quality of life domain. Greater depression severity was significantly associated with poorer quality of life across all domains. Greater social participation was associated with better quality of life, but only for individuals with lower anxiety. More severe dysphoria was associated with poorer overall quality of life and the psychological and physical health domains. Conclusions: Results suggest that mental health and emotion dysregulation are important predictors of quality of life for autistic people. They also suggest that anxiety symptoms may attenuate the beneficial effects of social participation. This study provides insight into the unique experiences of autistic individuals and highlights potential unmet need.

Social participation is associated with a habituated blood pressure response to recurrent stress.

Lower cardiovascular reactivity is a proposed marker of motivational dysregulation and is related to a range of adverse behavioural and health outcomes. Social participation is a form of motivated behaviour and represents the frequency in which an individual engages in social activities. Low social participation has recently been linked to lower cardiovascular responses to acute psychological stress. With recent work emphasizing the importance of assessing adaptation of the cardiovascular response to recurrent stress, the aim of the current study is to build on previous work by examining the relationship between social participation and cardiovascular stress response adaptation. This study utilised data from the Pittsburgh Cold Study 3 (PCS 3). Two hundred and thirteen participants (M = 30.13; SD = 10.85) completed a social participation measure and had their systolic blood pressure (SBP), diastolic blood pressure (DBP) and heart rate (HR) monitored across two separate standardized stress testing sessions. The testing sessions consisted of a 20-minute baseline and a 15-minute stress task. Results indicated that higher levels of social participation were associated with greater blood pressure habituation to recurrent stress, extending previous work identifying that social participation was associated with higher cardiovascular responses to stress. The present study identifies that those reporting greater levels of social participation may show enhanced stress tolerance when exposed to recurrent stress.

On the Move pad - a portable multipurpose pad: User feedback.

CONTEXT/OBJECTIVE: Hard-shell toilet seats may compromise safety and hinder the participation of individuals at risk for pressure injuries (PIs) when using these facilities away from home in public, hotel, or family/friend restrooms. Moreover, people often add "wash-cloths" for additional padding for comfort, and to reduce the risk of PIs due to pressure or shearing on their wheelchairs surfaces. This study investigated the utilization of portable pads, initially designed for toilet use but adaptable to various places and contexts, while examining pad usability. DESIGN: A cross-sectional descriptive survey design. SETTING: Inpatient care, outpatient care, and community setting. PARTICIPANTS: 45 individuals at risk of PIs. RESULTS: Participants extended the use of these pads beyond toilets, employing them as wheelchair armrest and leg rest pads in other settings. Feedback from a customized questionnaire indicated high levels of usefulness (8.5/10) and ease of use (9.1/10) attributed to the pads. Among the features, the top three favored were ease of use, comfort/cushioning, and function. Participants expressed a desire for a variety of sizes and colors to enable versatile usage and suggested incorporating a pocket for storing small items. CONCLUSIONS AND RELEVANCE: Individuals at risk of PIs require cushioning not only on hard-shell toilet seats, but also for additional padding, protection and enhancing the use of wheelchairs. Rehabilitation professionals can play a crucial role in educating and training both clients and caregivers to understand PI prevention, enabling them to effectively leverage the pads in appropriate situations, thereby enhancing their comfort in their wheelchairs during social engagement.

[Relationship between the type and number of social participation events and the cognitive function in older diabetics].

OBJECTIVE: To examine the relationship between the type and number of social participation events and the cognitive function in elderly patients with diabetes. METHODS: The subjects were diabetic outpatients of ≥60 years of age who were managed at Ise Red Cross Hospital. Mild cognitive impairment (MCI) and dementia were assessed using a self-administered dementia checklist. Six types of social participation activities and the number of participants were investigated. A logistic regression analysis with MCI and dementia as dependent variables, social participation as an explanatory variable, and adjustment variables was used to calculate the odds ratios for social participation according to the presence of MCI and dementia. RESULTS: In total, 352 patients were included in the analysis. Volunteer activities (P=0.012), hobbies (P=0.006), activities to share skills and experiences (P=0.026), and work (P=0.003) were significantly associated with dementia. Regarding the association between the amount of social participation and dementia, there was a decrease in the risk of dementia when the number of social participation was 2. However, social participation was not significantly associated with MCI in this study. CONCLUSION: The type and number of social participation events were found to be associated with the risk of dementia in elderly patients with diabetes.

The Effect of Neurodevelopmental Disorders Characteristics on Aspects of Social Functioning.

AIM: The purpose of this study was to estimate the extent to which neurodevelopmental disorders (NDD's) symptoms (motor, sensory, attention and executive function) are associated with aspects of social function among school aged children. METHODS: This cross-sectional study included 39 children aged 6-9 years old (71.8% boys) who were referred to child development centers due to motor, sensory, and/or cognitive difficulties. The parents completed NDD's symptoms questionnaires: Developmental Coordination Disorder Questionnaire; Child Sensory Profile-2; Attention Deficit Hyperactive Disorder (ADHD) Rating Scale and the Behavior Rating Inventory of Executive Function. They also completed the Social Skills Improvement System and a social participation measure. RESULTS: Analysis demonstrated low to moderate correlations between social functioning aspects and the majority of NDD's symptoms. Executive functioning was the only predictor of social skills and social participation and accounted for most of the variability of behavioral problems, alongside a small contribution of ADHD symptoms. CONCLUSION: The findings contribute to the accumulating body of knowledge regarding social abilities of children with NDD's and suggest new information as to the effect of executive functions in this domain. Along with conducting a routine evaluation of social skills among children suspected to have NDD's, executive functions should also be comprehensively evaluated.

The impact of intergenerational support on social participation patterns of older adults in rural China.

Objectives: This study aimed to examine the association between different dimensions of bi-directional intergenerational support and the social participation patterns of rural older adults, while also exploring the heterogeneity of these older adults by gender and age. Methods: Based on longitudinal survey data from the 'Well-Being of Older People in Anhui Province (WESAP)' in 2018 and 2021, this study used latent class analysis to identify social participation patterns and used multinomial logistic regressions to explore the relationship between intergenerational support and social participation patterns among rural older adults. Results: First, the social participation patterns of rural older persons can be divided into four categories: leisure type (9%), work type (11%), housekeeping type (57.9%) and family labor type (22.1%). Second, there is heterogeneity in the relationship between intergenerational support and social participation patterns in older people, among them, receiving financial support decreased the likelihood of older adults being categorized as work type and family labor type by 14 and 7.7%, respectively, while providing financial support increased the likelihood of older adults belonging to the family labor type by 7.5%; receiving caring support increased the likelihood of older parents being categorized as leisure type by 6%, while providing caring support decreased the likelihood of older parents being categorized as leisure type by 10%; emotional support is related to all patterns of social participation among older adults. Third, the effects of intergenerational support vary across subgroups based on gender and age. Conclusion: Two-way intergenerational support was significantly associated with social participation among rural older adults, and there was significant heterogeneity in this association. Children and older persons should be encouraged to strengthen two-way intergenerational mobility to give full play to the positive impact of different dimensions of intergenerational support on the social participation of older persons in rural areas, ultimately enhancing the quality of life for rural older adults.

Framing Facets of Social Participation: Older Adults' Experiences of "Social Online Meetings".

Changing demographics with an increased proportion of older adults indicate the need to develop new health-promoting interventions where the potential of digitization is considered. The aim was to explore and create an understanding of how social online meetings are experienced by older adults. Interviews with older adults generated data that were analyzed using a grounded theory approach. The participants were interviewed after participating in a digital health promotion group initiative provided in a municipality context. A core conceptual category and three subcategories reflected an intertwined process of discovering facets of social participation where internal reflections on personal values and needs were nurtured by an external driven process of becoming part of a group in an online context. Occupational therapists and other health and social care professionals need to consider the various facets of social participation when supporting older adults active and healthy aging.

Older Adults' Experiences of "Social Online Meetings"Promoting health among older adults is an important societal issue. Changing demographics with an increased proportion of older adults indicate the need to develop new health-promoting interventions. However, it is important to explore how such interventions in municipal settings meet the needs of older adults and the circumstances that influence their participation. Therefore, this study aimed to understand how older adults experience social online meetings. Seven older adults who had participated in an intervention called "social online meetings" were interviewed about their experiences. The findings demonstrate how older adults come to explore various dimensions of social participation and the value it holds for their everyday life. This gave rise to achieving new perspectives on everyday activities and encouraged personal development, and generated ideas for change. Occupational therapists and other health and social care professionals should consider how older adults' social participation can be promoted when designing health-promoting interventions online.

Quality of life in children with erythropoietic protoporphyria: a case-control study.

Erythropoietic protoporphyria (EPP) is an inherited metabolic disease that causes painful phototoxic reactions, starting in childhood. Studies have shown a reduced quality of life (QoL) in adults with EPP, however, data on children with the disease are lacking. Since treatment for EPP is currently not registered for children, knowledge about their QoL is of crucial importance. In this prospective, case-control study, we included children from the Netherlands and Belgium diagnosed with EPP and matched to healthy controls. Previously collected EPP quality of life (EPP-QoL) data from matched adults with EPP were used. QoL scores, utilizing the Pediatric Quality of Life Inventory (PedsQL) and the disease-specific EPP-QoL, were collected. Scores range from 0 to 100, with higher scores indicating a higher QoL. Non-parametric tests were used to compare groups. A total of 15 cases, 13 matched healthy control children, and 15 matched adults with EPP were included. Children with EPP exhibited lower median scores in the PedsQL in both physical (cases: 87.5 (interquartile range [IQR] 77.7-96.1), controls: 99.2 [IQR 94.9-100.0], p = 0.03) and social (cases: 77.5 [IQR 69.4-86.3], controls: 97.5 [IQR 78.8-100.0], p = 0.04) domains compared to healthy children, although these differences were not statistically significant after correcting for multiple testing. The overall median EPP-QoL score for children was similar to adults with EPP (children: 44.4 [IQR 25.0-54.2], adults: 45.8 [IQR 25.7-68.1], p = 0.68). However, within the EPP-QoL subdomain on QoL, children were found to have significantly lower median scores (children: 16.7 [IQR 0.0-33.3], adults: 33.3 [IQR 33.3-62.5], p < 0.01). In conclusion, children with EPP experience a reduced QoL compared to both healthy children and adults with EPP. Ensuring treatment availability for this patient group is crucial for improving their QoL. We advocate the inclusion of children in safety and efficacy studies, to ensure availability of treatment in the future.

Measuring the Social Impact of Burn injuries in Australia: An Adaptation of the Life Impact Burn Recovery Evaluation - The Aus-LIBRE Profile.

Burn survivors can experience social participation challenges throughout their recovery. The aim of this study was to develop a novel Australian English translation of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, the Aus-LIBRE Profile. This study consisted of three stages: 1) translation of the LIBRE Profile from American to Australian English by Australian researchers/burns clinicians; 2) piloting and cognitive evaluation of the Aus-LIBRE Profile with burn survivors to assess the clarity and consistency of the interpretation of each individual item, and 3) review of the Aus-LIBRE Profile by colleagues who identify as Aboriginal Australians for cross-cultural validation. In stage 2, investigators administered the translated questionnaire to 20 Australian patients with burn injuries in the outpatient clinic (10 patients from xx and 10 patients from yy). Face validity of the Aus-LIBRE Profile was tested in 20 burns survivors (11 females) ranging from 21 to 74 years (median age 43 years). The total body surface area (TBSA) burned ranged from 1% to 50% (median 10%). Twelve language changes were made based on the feedback from the burn clinicians/researchers, study participants and colleagues who identify as Aboriginal Australians. Using a formal translation process, the Aus-LIBRE Profile was adapted for use in the Australian burn population. The Aus-LIBRE Profile will require psychometric validation and testing in the Australian burn patient population before broader application of the scale.