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PURPOSE: To explore the effects of the Personalized Citizen Assistance for Social Participation (APIC), an intervention adapted here for visual impairment, involving weekly stimulation sessions over six to twelve months, provided by trained and supervised attendants, on seven outcomes (social participation, leisure, independence, mobility, quality of life, health-related quality of life, and empowerment) in older adults with visual impairment, and to document its facilitators and barriers. METHODS: A mixed-method design, which included a pre-experimental and an exploratory qualitative clinical research component, was used on 8 older adults (7 women) with visual impairment aged 70-86, and 8 attendants (5 women) aged 20-74. Before the intervention, directly after, and four months later, older adults completed questionnaires on the 7 outcomes. During the intervention, attendants completed diaries and participated in monthly meetings. Semi-structured interviews were administered to all participants after the intervention. RESULTS: Social participation, leisure, mobility, quality of life and empowerment had increased immediately after the APIC. These improvements were still generally observed four months later. Participants reported that the APIC improved older adults' capabilities, social participation, and social environment. CONCLUSIONS: The APIC is a promising intervention which helps older adults with visual impairment to deal with social restrictions.
In older adults, visual impairment has important consequences on active and healthy aging.Personalized citizen assistance for social participation (APIC) is an intervention that aims to foster the social participation.This study shows that APIC adapted to visual impairment influences social participation, leisure, mobility, quality of life and empowerment of older adults with visual impairment.Participants also reported improvements in their capabilities, social participation, and social environment.
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BACKGROUND: Randomized controlled trials (RCTs) are rigorous scientific research designs for evaluating intervention effectiveness. However, implementing RCTs in a real-world context is challenging. To develop strategies to improve its application, it is essential to understand the strengths and challenges of this design. This study thus aimed to explore the strengths, challenges, and strategies for improving the implementation of a pragmatic multicenter, prospective, two-arm RCT evaluating the effects of the Personalized Citizen Assistance for Social Participation (Accompagnement-citoyen Personnalisé d'Intégration Communautaire: APIC; weekly 3-h personalized stimulation sessions given by a trained volunteer over a 12-month period) on older adults' health, social participation, and life satisfaction. METHODS: A multiple case study was conducted with 14 participants, comprising one research assistant, seven coordinators, and six managers of six community organizations serving older adults, who implemented the APIC in the context of a RCT. Between 2017 and 2023, qualitative data were extracted from 24 group meetings, seven semi-directed interviews, emails exchanged with the research team, and one follow-up document. RESULTS: Aged between 30 and 60 (median ± SIQR: 44.0 ± 6.3), most participants were women from organizations already offering social participation interventions for older adults and working with the public sector. Reported strengths of this RCT were its relevance in assessing an innovative intervention to support healthy aging, and the sharing of common goals, expertise, and strategies with community organizations. Challenges included difficulties recruiting older adults, resistance to potential control group assignments, design complexity, and efforts to mobilize and engage volunteers. The COVID-19 pandemic lockdown and health measures exacerbated challenges related to recruiting older adults and mobilizing volunteers and complicated delivery of the intervention. The strategies that mostly overcame difficulties in recruiting older adults were reducing sample size, simplifying recruitment procedures, emphasizing the health follow-up, extending partnerships, and recognizing and supporting volunteers better. Because of the lockdown and physical distancing measures, the intervention was also adapted for remote delivery, including via telephone or videoconferencing. CONCLUSION: Knowledge of the strengths and challenges of pragmatic RCTs can contribute to the development of strategies to facilitate implementation studies and better evaluate health and social participation interventions delivered under real-life conditions. TRIAL REGISTRATION: NCT03161860; Pre-results. Registered on May 22, 2017.
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Participación Social , Humanos , Femenino , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Adulto , Voluntarios , Proyectos de Investigación , COVID-19/epidemiología , Ensayos Clínicos Controlados Aleatorios como Asunto , Ensayos Clínicos Pragmáticos como Asunto , Anciano , Satisfacción Personal , Estudios Multicéntricos como AsuntoRESUMEN
Background: Frequent social participation among older adults is associated with greater health. Although understanding how sex and gender influence social participation is important, particularly in developing sex-inclusive health promotion and preventive interventions, little is known about factors influencing engagement of older women and men in social activities. Aim: This study thus aimed to examine factors influencing social activities of older women and men. Methods: A mixed-method systematic review was conducted in nine electronic databases from inception to March 2023. The studies had to define social participation as activities with others and examine its influencing factors among community-dwelling older women and men. Data were analyzed using convergent synthesis design from a socio-ecological perspective. Results: Forty-nine studies, comprising 42 quantitative, five qualitative and two mixed method design were included. Themes identified concerned: (a) sociodemographic factors, (b) personal assets, (c) interpersonal relationships and commitments, (d) physical environment, and (e) societal norms and gender expectations. The findings identified the heterogeneous needs, preferences and inequalities faced by older women and men, considerations on sociocultural expectations and norms of each gender when engaging in social activities, and the importance of having adequate and accessible social spaces. Overall, this review identified more evidence on factors influencing social participation among women than in men. Conclusion: Special attention is needed among community care providers and healthcare professionals to co-design, implement or prescribe a combination of sex and gender-specific and neutral activities that interest both older women and men. Intersectoral collaborative actions, including public health advocates, gerontologists, policymakers, and land use planners, are needed to unify efforts to foster social inclusion by creating an age-friendly and sustainable healthy environment. More longitudinal studies are required to better understand social participation trajectories from a sex and gender perspective and identify factors influencing it. Systematic reviews registration: http://www.crd.york.ac.uk/PROSPERO, identifier [CRD42023392764].
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Vida Independiente , Participación Social , Humanos , Anciano , Femenino , Masculino , Factores Sexuales , Anciano de 80 o más Años , Relaciones InterpersonalesRESUMEN
As the COVID-19 pandemic impacted mental health, this longitudinal study examined the effect of age-friendly communities (AFC) action plan on older adults' depressive symptoms. Using the CLSA, the CLSA COVID-19 Questionnaire study, survey of Canadian municipalities, and the census, the depressive symptoms trajectories were modeled with multilevel multinomial regressions. Most respondents (66.1%) had non-depressed trajectories, 28.1% experienced a moderate increase in depressive symptoms, and 5.8% had a depressed trajectory. AFC action plans did not have a protective effect on these trajectories. Being a female, greater loneliness, lower income, ≥2 chronic conditions, inferior social participation, weaker sense of belonging, COVID-19 infection, and pandemic stressors predicted a depressed trajectory. Neighborhood's deprivation had a weak protective effect on the declining trajectory. Although AFC action plans provided no benefits during the pandemic, volunteers facilitating resource access and social interactions could limit any increase in depressive symptoms.
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COVID-19 , Depresión , Pueblos de América del Norte , Humanos , Femenino , Anciano , Estudios Longitudinales , Depresión/epidemiología , Pandemias , Factores de Riesgo , Canadá/epidemiología , EnvejecimientoRESUMEN
Afin de mieux comprendre la distribution géographique des facilitateurs et des obstacles à la participation sociale des Québécois âgés, cette étude visait à documenter l'Indice du potentiel de participation sociale (IPPS) selon les zones métropolitaines, urbaines et rurales. Des analyses de données secondaires, dont l'Enquête transversale sur la santé des collectivités canadiennes, ont permis de développer et de cartographier un indice composé de facteurs environnementaux associés à la participation sociale, pondérés par une analyse factorielle. En zones métropolitaines, l'IPPS était supérieur au centre qu'en périphérie, compte tenu d'une concentration accrue d'aînés et des transports. Bien qu'atténuée, la configuration était similaire en zones urbaines. En zone rurale, un IPPS élevé était associé à une concentration d'aînés et un accès aux ressources accru, sans configuration spatiale. Pour favoriser la participation sociale, l'IPPS soutient que les transports et l'accès aux ressources doivent respectivement être améliorés en périphérie des métropoles et en zone rurale.
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INTRODUCTION: Telehealth interventions have the potential to enhance access to care and improve efficiency while reducing the burden on patients. Although telehealth interventions are well accepted and adopted in physical therapy, their usage in occupational therapy for older adults is less common, and limited information exists regarding their setting and context. OBJECTIVE: To provide an inventory and synthesis of telehealth interventions in occupational therapy for older adults. METHOD: For published studies on telehealth-based occupational therapy interventions in older adults between 2000 and 2022, six databases were reviewed. Data extraction and analysis were guided by the taxonomies developed by Tulu, McColl and Law and informed by the Canadian Model of Occupational Performance and Engagement. FINDINGS: Twenty-three studies on telehealth interventions in occupational therapy for older adults were identified, mostly from North American authors (n = 11; 47.8%) and randomised clinical trials (n = 9; 39.1%). Most participants had a health problem (n = 20; 87.0%), mainly stroke (n = 9; 39.1%). Interventions focussed primarily on symptom management education (n = 12; 52.2%) of community-dwelling adults with health conditions, using videoconferencing systems or applications (n = 14; 60.7%). Interventions were delivered from the healthcare centre (n = 6; 26.1%) to the person's home (n = 18; 78.3%) synchronously (n = 19; 82.6%). About one third (n = 8; 34.8%) of the studies specified the therapist's location. CONCLUSION: Published studies on telehealth interventions in occupational therapy with older adults have mainly focussed on the synchronous training and education of participants using videoconferencing systems or applications. According to these studies, the scope of interventions is limited and could be expanded, for example, through occupational development and environmental modification. To better understand and describe best practices in the use of telehealth in occupational therapy, future studies should provide more details about the interventions performed, the technology used and the environmental settings of the therapist.
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Terapia Ocupacional , Telemedicina , Humanos , Anciano , Canadá , Promoción de la Salud , Vida Independiente , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
OBJECTIVE: The objective of this review is to assess and synthesize the available qualitative evidence on the experiences of social participation of older adults with an early-onset physical disability. INTRODUCTION: Understanding the experiences of social participation among older adults with a physical disability acquired earlier in life can guide the development of interventions and policies. It will also help with fostering meaningful community participation and aid in improving the quality of their social participation. INCLUSION CRITERIA: This review will consider primary studies that explore the experiences of social participation of older adults with an early-onset physical disability. The review will focus on qualitative data, including methods such as phenomenology, grounded theory, ethnography, action research, and feminist research. Studies in French or English will be considered for inclusion, and there will be no limitation on publication dates. METHODS: A keyword search strategy will be carried out in MEDLINE (Ovid), PsycINFO (Ovid), CINAHL (EBSCOhost), Web of Science, and the Cochrane Library. ProQuest Dissertations and Theses (ProQuest) will be searched for unpublished articles. Two independent reviewers will perform the screening and inclusion process, assess the quality of the evidence, and complete data extraction. The JBI approach to critical appraisal, study selection, data extraction, and data synthesis (meta-aggregation) will be used. The ConQual approach will be used to establish confidence in the synthesized findings. REVIEW REGISTRATION: PROSPERO CRD42022371027.
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Antropología Cultural , Participación Social , Humanos , Anciano , Investigación Cualitativa , Revisiones Sistemáticas como Asunto , Literatura de Revisión como AsuntoRESUMEN
OBJECTIVES: To address global aging, a paradigm shift is needed from disease prevention and treatment towards active aging, i.e., optimizing opportunities for health, participation, and security as people age. Little is known about how age-friendly environments promote active aging. This study thus aimed to explore how (through which mechanisms and in what contexts) environments can promote active aging and, specifically, positive health, social participation, and health equity. METHODS: Using a realist approach and semi-structured focus groups, a case study was used in two Quebec municipalities known for best fostering active aging. Data also included participants' logbooks, sociodemographic questionnaires, municipalities' sociodemographic profiles, and policy documents. A conceptual framework and thematic content analysis were carried out. RESULTS: A total of 24 participants (9 older adults, 4 health professionals, 3 community-based actors, 5 municipal employees, and 3 elected officials) took part in 5 focus groups. Regarding contexts, both cases were midsize municipalities having an income and education level higher to Quebec's averages with supportive active aging policies. Two main themes explained how the environments promoted active aging: (1) by ensuring proximity through built (urban planning), social (network structures), services (variety and availability of local and outreach resources), and organizational (active listening to older adults' needs for active aging) environments; and (2) by fostering transversality through built (universal accessibility, intergenerational spaces), social (intergenerational opportunities for social participation), and political/organizational (unified and complementary policies) environments. CONCLUSION: To better promote active aging through age-friendly environments, practices should focus on fostering proximity and transversality, and act simultaneously on multiple environments.
RéSUMé: OBJECTIFS: Pour faire face au vieillissement des populations, un changement de paradigme est requis allant de la prévention et du traitement de la maladie vers la promotion d'un vieillissement actif, c.-à.-d. l'optimisation des possibilités de bonne santé, de participation sociale et de sécurité pendant l'avancement de l'âge. Peu d'informations renseignent sur comment les environnements favorisent le vieillissement actif. Cette étude visait donc à explorer comment (par quels mécanismes et dans quels contextes) les environnements favorisent le vieillissement actif et, spécifiquement, la santé positive, la participation sociale et l'équité en santé des aînés. MéTHODES: Selon une approche réaliste et des groupes de discussion semi-dirigés, une étude de cas multiples a été réalisée dans deux municipalités québécoises, reconnues pour favoriser un vieillissement actif. Les données incluaient aussi les journaux de bord et les questionnaires sociodémographiques des participants ainsi que les profils sociodémographiques des municipalités et leurs politiques municipales. Les données ont été traitées à l'aide d'un cadre conceptuel et d'une analyse de contenu thématique. RéSULTATS: Un total de 24 participants (9 aînés âgés de 65 ans ou plus, 4 professionnels de la santé, 3 acteurs communautaires, 5 employés municipaux et 3 élus) ont pris part à un des cinq groupes de discussion. Concernant les éléments de contexte, les deux municipalités étaient de taille moyenne et présentaient des revenus et un niveau de scolarité supérieurs à la moyenne québécoise ainsi que des politiques municipales favorisant un vieillissement actif. Deux thèmes principaux expliquaient comment les environnements favorisaient le vieillissement actif : 1) en assurant la proximité des environnements bâti (aménagement urbain), social (structures des réseaux sociaux), des services (ressources locales et de proximité) et politique/organisationnel (écoute active des besoins des aînés pour un vieillissement actif); et 2) en favorisant la transversalité des environnements bâti (accessibilité universelle, espaces intergénérationnels), social (opportunités intergénérationnelles) et politique/organisationnel (politiques unifiées et complémentaires). CONCLUSION: Pour mieux promouvoir le vieillissement actif grâce à des environnements conviviaux aux aînés, les pratiques doivent privilégier la proximité et les approches transversales, en plus d'agir sur plusieurs environnements simultanément.
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Envejecimiento , Atención a la Salud , Humanos , Anciano , Quebec , Ciudades , CanadáRESUMEN
Resident-to-resident aggression (RRA) is an important issue in congregate residential facilities (CRFs) for older adults and has devastating effects. This study aimed to provide an inventory and content analysis of the practices used to counter RRA and promote wellness care for older adults in CRFs. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, original, peer-reviewed research and systematic reviews published in 14 electronic databases and two gray literature sources were examined. Of the 6196 articles identified, 28 met the inclusion criteria. Practices aimed to prevent, track or intervene in RRA, mostly in long-term care centers, but few were evidence-based and ready for widespread implementation. It emerges that continuous training of staff is necessary and that it should prioritize a person-centered approach. CRFs' managers must promote a culture of wellness care and policymakers should consider the prevention practices to improve the quality of life of older adults in CRFs.
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Agresión , Abuso de Ancianos , Anciano , Humanos , Casas de Salud , Calidad de Vida , Abuso de Ancianos/prevención & control , Instituciones ResidencialesRESUMEN
Municipalities can foster the social participation of aging adults. Although making municipalities age-friendly is recognized as a promising way to help aging adults stay involved in their communities, little is known about the key components (e.g., services and structures) that foster social participation. This study thus aimed to identify key age-friendly components (AFC) best associated with the social participation of older Canadians. Secondary analyses were carried out using baseline data from the Canadian Longitudinal Study on Aging (n = 25,411) in selected municipalities (m = 110 with ≥ 30 respondents), the Age-friendly Survey, and census data. Social participation was estimated based on the number of community activities outside the home per month. AFC included housing, transportation, outdoor spaces and buildings, safety, recreation, workforce participation, information, respect, health, and community services. Multilevel models were used to examine the association between individual social participation, key AFC, and environmental characteristics, while controlling for individual characteristics. Aged between 45 and 89, half of the participants were women who were engaged in 20.2±12.5 activities per month. About 2.5% of the variance in social participation was attributable to municipalities. Better outdoor spaces and buildings (p < 0.001), worse communication and information (p < 0.01), and lower material deprivation (p < 0.001) were associated with higher social participation. Age was the only individual-level variable to have a significant random effect, indicating that municipal contexts may mediate its impact with social participation. This study provides insights to help facilitate social participation and promote age-friendliness, by maintaining safe indoor and outdoor mobility, and informing older adults of available activities.
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Características de la Residencia , Participación Social , Humanos , Femenino , Anciano , Persona de Mediana Edad , Anciano de 80 o más Años , Masculino , Ciudades , Canadá , Estudios Longitudinales , EnvejecimientoRESUMEN
BACKGROUND AND OBJECTIVES: Although the positive influence of social activity on health is now well-established, a complex relationship exists among social participation, personal, social and the environment. Social participation of older adults was examined in rural and urban settings to identify features of the built-environment and perception of neighborhood specific to the locale. RESEARCH DESIGN AND METHODS: Using cross-sectional data from the Canadian Longitudinal Study on Aging (CLSA), we examined social participation and health of older people (65 + yrs) in relation to the built environment and sociocultural contexts for urban and rural areas. A social participation index was derived from responses on the frequency of participating in 8 social activities over the past 12 months. Personal, household and neighborhood indicators were examined to develop multivariable regression models for social participation in urban and rural cohorts. RESULTS: No meaningful differences were seen with the frequency of social participation between rural and urban settings; however, the type of community-related activities differed in that a greater proportion of urban participants reported sports and educational/cultural events than rural participants. Service club activities were greater for rural than urban participants. Different neighborhood features were statistically significant factors in explaining social participation in rural than in urban locales, although transportation was a significant factor regardless of locale. Trustworthiness, belonging and safety were perceived factors of the neighborhood associated with higher social participation for rural participants. DISCUSSION AND IMPLICATIONS: The relationship between home and health becomes stronger as one ages. Social and physical features of built environment specific to urban and rural settings need to be considered when implementing appropriate social activities for older people.
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Envejecimiento , Participación Social , Humanos , Anciano , Estudios Longitudinales , Canadá/epidemiología , Estudios Transversales , Población Urbana , Población RuralRESUMEN
Cette étude visait à explorer comment les composantes clés de l'environnement des communautés favorisent les résultantes de santé d'Estriens âgés, plus précisément leur santé positive, leur participation sociale et leur équité en santé. Une étude de cas multiples a été réalisée auprès de cinq communautés estriennes (cas) à l'aide de groupes de discussion focalisée (1/communauté) regroupant un total de 49 participants connaissant bien les communautés respectives, soit 47 aînés, 1 conseillère municipale et 1 technicienne en loisir. En rendant accessible et équitable la réalisation d'activités importantes pour les aînés, la nature, une offre d'activités variée, des moyens de communication efficace et les mesures favorisant l'équité avaient une influence positive sur les résultantes de santé. Des facteurs individuels tels qu'un niveau élevé de scolarité et un statut socioéconomique favorable avaient aussi une influence positive. Ces résultats permettent d'outiller les décideurs souhaitant favoriser un vieillissement actif et en santé.
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Cette étude visait à documenter comment un programme de familiarisation à l'utilisation du transport en commun influence l'expérience de mobilité des aînés. Ce programme a été co-construit avec des partenaires clés afin d'y inclure l'usage d'outils de planification technologiques et un accompagnement personnalisé tenant compte des incapacités des participants. Une étude de cas multiples (n = 7) a été menée selon une approche mixte convergente, combinant des méthodes qualitatives (p. ex., entrevues) et quantitatives (p. ex., cartes à puces). Les participants qui ont bénéficié davantage de la formation ont rapporté une meilleure connaissance du transport en commun et une plus grande confiance à utiliser l'autobus. Ils ont aussi effectué plus de sorties. Nos résultats suggèrent d'intégrer une destination « signifiante ¼ et l'apprentissage d'outils de planification non technologiques à la formation pour en assurer la compatibilité avec les besoins et le niveau de littératie numérique des aînés. De futures études aideront à favoriser cette option de transport en amont de la perte du permis de conduire.
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Age-related social biases - ageism - are developed at an early age. Interventions to counter ageism have been identified but little is known about their mechanisms, particularly in children. This study aimed to provide a comprehensive understanding of which interventions in youths are most effective, under which circumstances, how, and with what outcomes. Using 46 keywords in 6 databases, a realist review identified 24 studies published between 2000 and 2022 targeting youths under 18. A content analysis of these studies led to the construction of a Context-Mechanisms-Outcomes explanatory model. Contextual facilitators triggering mechanisms for changing stereotypes, prejudices and discrimination were: 1) enhancing knowledge about aging and older adults by providing nuanced information, 2) improving the quality of intergenerational contacts, 3) increasing opportunities to apply previously acquired knowledge in intergenerational interactions, and 4) promoting reflective thinking about experiences with older adults. However, stereotypes and prejudices appeared to be resistant and changes difficult to generalize. Insufficiently advanced cognitive development in children or viewing healthy and socially engaged older adults as unrepresentative of their age group were obstacles that reduced intervention effectiveness. Future studies should explore how advancing age influences interventions as well as the characteristics of older adults involved.
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La présente étude visait à documenter l'implantation de l'Accompagnement-citoyen personnalisé d'intégration communautaire (APIC), lors duquel des bénévoles soutiennent la participation sociale d'aînés, dans des organismes communautaires en identifiant les facteurs favorables et défavorables ainsi que ses conditions essentielles. Soutenu par un devis qualitatif descriptif de type recherche clinique, une rencontre et six entretiens semi-dirigés ont été réalisés afin de documenter cette implantation dans six organismes communautaires Åuvrant en milieu urbain au Québec (Canada). Selon les six coordonnatrices de l'APIC, les cinq directeurs généraux et l'agente de recherche, le principal facteur favorable est la conviction des responsables de l'implantation en la valeur ajoutée de l'intervention, incluant sa concordance avec la mission et les valeurs des organismes et les besoins de la population qu'ils desservent. Les facteurs défavorables sont principalement la répartition aléatoire et le temps accordé pour l'implantation. Ces résultats permettront de mieux guider l'implantation de l'APIC à plus grande échelle.
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Ciclofosfamida , Humanos , Canadá , QuebecRESUMEN
ObjectivesThis paper examines the longitudinal effects of changes in the association between loneliness and depressive symptoms during the pandemic among older adults (65+). Methods Baseline (2011-2015) and Follow-up 1 (2015-2018) from the Canadian Longitudinal Study on Aging (CLSA), and the Baseline and Exit waves of the CLSA COVID-19 study (April-December, 2020) (n = 12,469) were used. Loneliness was measured using the 3-item UCLA Loneliness Scale and depression using the CES_D- 9. Results Loneliness is associated with depressive symptoms pre-pandemic; and changes in level of loneliness between FUP1 and the COVID Exit survey, adjusting for covariates. No interaction between loneliness and caregiving, and with multimorbidity, on depressive symptoms were observed, and several covariates exhibited associations with depressive symptoms. Discussion Strong support is found for an association between loneliness on depressive symptoms among older adults during the pandemic. Public health approaches addressing loneliness could reduce the burden of depression on older populations.
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COVID-19 , Soledad , Humanos , Anciano , Depresión/epidemiología , Depresión/diagnóstico , Estudios Longitudinales , Canadá/epidemiología , EnvejecimientoRESUMEN
As supporting active and healthy aging calls for different community-based housing alternatives, integrated knowledge of their impacts on older adults' social participation is required. This study aimed to explore how community-based housing fostered social participation in older adults. A scoping review was used to systematically identify relevant studies according to 32 keywords in 8 electronic databases. Published during 2000-2021, the 46 studies were carried out in North America, Europe, Oceania, and Asia, documenting older adults' social participation in six community-based housing models. Targeting different clienteles, these models mainly promote older adults' social participation by providing: 1) accessible common space in a design favorable to social interactions; 2) proximity to resources; 3) flexible rules and policies that facilitate residents' interactions with not only co-residents but community neighbors; and 4) benevolent communities. These results highlight the interactions between the physical and social environments; they suggest the importance of building benevolent communities as well as of sharing resources among residences and local communities to create a supportive living and neighborhood environment for active and healthy aging. Future studies should further explore the role of different stakeholders in developing benevolent communities by considering the dynamics between the person and the environment.
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Vivienda , Participación Social , Humanos , Anciano , Participación de la Comunidad , PolíticasRESUMEN
BACKGROUND: Myotonic dystrophy type 1 (DM1) is the most prevalent adult form of neuromuscular disorders, for which a decrease of participation with age is known. However, little is known about facilitators and barriers to participation, especially from the perspective of both patients and caregivers. OBJECTIVE: This study explored and explained changes in participation post-diagnosis with myotonic dystrophy type 1 from the perspective of six adults, their relatives and nurse case managers. METHODS: A multiple case study was carried out with these triads (nâ=â 6) using semi-structured individual interviews, medical charts, and a participation patient-reported outcome measure. The six cases were built around three women and three men (age: 40-56 years; disease duration: 19-39 years). Their "relatives" were mainly family members. Nurse case managers had done annual follow-ups with all the adults for approximately ten years. Changes in participation were characterized generally by: 1) heterogeneity, 2) insidious increase in restrictions, and more specifically by: 3) redesigning accomplishment, 4) progressive social isolation, 5) restrictions in life-space mobility, and 6) increasingly sedentary activities. RESULTS: Important facilitators of participation were the adult's resilience, highly meaningful activities, social support, living arrangement, and willingness to use technical aids. Barriers were mostly related to symptoms and a precarious social network, and were affected by misfit and potential syndemic interactions between personal (e.g., comorbidities) and environmental (e.g., stigma) factors. CONCLUSION: This study identified key facilitators and barriers and their underlying processes, which should be integrated into the evaluation and intervention framework to optimize participation over time.
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Distrofia Miotónica , Adulto , Masculino , Humanos , Femenino , Persona de Mediana Edad , Actividades Cotidianas , Cuidadores , FamiliaRESUMEN
BACKGROUND: Multiple mobility-related challenges frequently appear with aging. As a result, many older adults have difficulty getting around, to go, for example, to doctors' appointments or leisure activities. Although various means of transportation are currently available, older adults do not necessarily use them, partly because they do not know which ones are adapted to their needs and preferences. To foster older adults' autonomy and freedom in their decision-making about transportation, it is crucial to help them make informed decisions about the means that suit them best. OBJECTIVE: Our aim is to develop Mobilainés, a one-stop platform transportation planning service combining different transport modes and services to help older adults move around in their community where, when, and how they wish. More specifically, we aim to (1) define older adults' mobility needs and preferences in order to conceptualize a one-stop platform; (2) cocreate a prototype of the one-stop platform; and (3) test the prototype with users in a real-life context. METHODS: This ongoing study uses a "Living Lab" co-design approach. This approach differs from traditional research on aging by facilitating intersectoral knowledge sharing and innovative solutions by and with older adults themselves. A steering committee of 8 stakeholders from the public, scientific, and private sectors, as well as older citizens, will meet quarterly throughout the study. The design comprises three phases, each with several iterative subphases. Phase 1 is exploration: through co-design workshops and literature reviews, members of the intersectoral committee will define older adults' mobility needs and preferences to support the conceptualization of the one-stop platform. Phase 2 is experimentation: 4 personas will be produced that reflect the different needs and preferences of typical older adult end users of the platform; for development of a prototype, scenarios and mockups (static designs of the web application) will be created through co-design sessions with older adults (N=12) embodying these personas. Phase 3 is evaluation: we will test the usability of the prototype and document changes in mobility, such as the ability to move around satisfactorily and to participate in meaningful activities, by and with older adults (N=30) who use the prototype. The steering committee will identify ways to support the adoption, implementation, and scaling up of Mobilainés to ensure its sustainability. Qualitative and quantitative data will be triangulated according to each subphase objective. RESULTS: The first phase began in September 2019. The study is scheduled for completion by mid-2023. CONCLUSIONS: This innovative transportation planning service will merge existing transportation options in one place. By meeting a wide variety of older adults' needs and preferences, Mobilainés will help them feel comfortable and safe when moving around, which should increase their participation in meaningful activities and reduce the risk of social isolation. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33894.