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  • Societal Participation
  • Societal Participation
  • Social Inclusion
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  • Social Integration
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  • New
  • Research Article
  • 10.1016/j.gerinurse.2026.104032
The role of assistive products in the relationship between activities of daily living and social participation among rural older adults in China: A cross-sectional study.
  • Jun 1, 2026
  • Geriatric nursing (New York, N.Y.)
  • Di Luo + 6 more

The role of assistive products in the relationship between activities of daily living and social participation among rural older adults in China: A cross-sectional study.

  • New
  • Research Article
  • 10.1111/aphw.70163
The impact of social participation on healthy ageing among Chinese middle-aged and older adults: The mediating role of life satisfaction.
  • Jun 1, 2026
  • Applied psychology. Health and well-being
  • Ben Li + 1 more

Healthy ageing is a major public health challenge in rapidly ageing societies, where longer life expectancy does not always translate into sustained well-being. This study examines health trajectories among Chinese middle-aged and older adults, focusing on social participation and the mediating role of life satisfaction. Using four waves (2011-2018) of the China Health and Retirement Longitudinal Study, we applied latent growth curve modelling to assess overall change and individual heterogeneity and latent growth mixture modelling to identify five trajectory categories across six dimensions: environment, vitality, cognitive function, sensory and physical abilities, daily activities and psychological well-being. The five classes were high initial stable, high initial declining, moderate initial increasing, moderate initial declining and low initial increasing. Multinomial logistic regression showed that greater social participation was associated with a lower likelihood of less favourable trajectories; relative to high initial stable, the low initial increasing group exhibited a significantly reduced risk. Cultural and recreational activities showed the strongest protective association, whereas volunteer service had no significant impact. Life satisfaction partially mediated the association between social participation and trajectory membership. These results suggest that expanding meaningful social participation and improving life satisfaction are important pathways for promoting healthy ageing among Chinese middle-aged and older adults.

  • New
  • Research Article
  • 10.1016/j.burns.2026.108003
The relationship between social participation and health-related quality of life two years after burn injury: A Burn Model System national database study.
  • Jun 1, 2026
  • Burns : journal of the International Society for Burn Injuries
  • Emma D Reutimann + 8 more

The relationship between social participation and health-related quality of life two years after burn injury: A Burn Model System national database study.

  • New
  • Research Article
  • 10.1016/j.clnesp.2026.103109
Factors influencing adherence to dietary management in patients with classical galactosemia: A systematic review.
  • Jun 1, 2026
  • Clinical nutrition ESPEN
  • Mohammad Meherab Hosen + 10 more

Factors influencing adherence to dietary management in patients with classical galactosemia: A systematic review.

  • New
  • Research Article
  • 10.1016/j.gerinurse.2026.103998
Experiences and coping strategies of community-dwelling middle-aged and older adults with physio-cognitive decline syndrome: A qualitative study.
  • Jun 1, 2026
  • Geriatric nursing (New York, N.Y.)
  • Fang-Wen Hu + 3 more

Physio-Cognitive Decline Syndrome (PCDS) is a clinical characterized by concurrent declines in physical and cognitive functions that precede disability. Taiwan's rapidly aging population highlights declines in physical and cognitive functions as precursors to disability, posing key challenges in geriatric care. Research shows these declines begin in early middle age and progress with age. Understanding middle-aged and older adults' experiences and coping strategies for Physio-Cognitive Decline Syndrome (PCDS) is essential for developing effective interventions. This study explored the subjective experiences and perceptions of PCDS among middle-aged and older adults to identify key themes and coping strategies in response to such declines. This qualitative study utilized purposive sampling, semi-structured face-to-face interviews with middle-aged (55-64 years) and older (≥65 years) adults to explore PCDS perceptions. Data were analyzed using content analysis. Participant experiences and perceptions formed three themes: (1) aging accelerates PCDS progression, (2) PCDS threatening daily life, and (3) adapting to changes. These findings further delineate a four-phase PCDS process: Individual Perception (recognizing decline), Life Threat (impact on daily life), Adaptation (accepting reality), and Positive Coping (implementing management strategies). Correspondingly, participants developed coping strategies to mitigate physical and cognitive decline, seek professional assessment, and strengthen support systems. Middle-aged and older adults with PCDS face physical and cognitive declines, mobility limitations, psychological stress, and social isolation. They adopt coping strategies like health maintenance, cognitive training, and social participation. Family and social support systems play a crucial role in their coping processes, while seeking professional medical assistance and engaging in community activities further enhance their confidence in managing PCDS.

  • New
  • Research Article
  • 10.1016/j.wss.2026.100381
Extending ageing in place through adaptable community‑led practices: Insights from four Ibasho contexts
  • Jun 1, 2026
  • Wellbeing, Space and Society
  • Sarah Speck + 3 more

• Community-led, co-created spaces empower older adults, as seen in Ibasho • Greater self-efficacy, wellbeing, and social participation across contexts • Ageing reframed as relational, collective, and spatially embedded process • Local adaptions fosters emotional anchoring, social ties and intergenerational ties • Resource and leadership gaps challenge sustainable community‑led ageing Extending Ageing in Place beyond its conventional boundaries is essential for addressing the relational and spatial dimensions of ageing. This study explores how community-based initiatives can reframe Ageing in Place as a dynamic, socially embedded process that fosters participation, belonging, and shared responsibility. Using ethnographic methods, we examine Ibasho, a community-led initiative that empowers older adults to co-create and manage intergenerational spaces. Fieldwork was conducted at four Ibasho sites – Japan, Nepal, the Philippines, and Singapore – through participant observation, ethnographic mapping, and over 80 qualitative interviews and group discussions. Data were analysed using qualitative content analysis. Findings show that Ibasho enhances wellbeing, self-worth, and social connectedness by enabling older adults to assume meaningful roles and responsibilities. Activities such as gardening, handicrafts, and communal meals foster emotional resilience and strengthen community ties. These experiences align with concepts of generativity and notions of self-efficacy, illustrating how older adults can be active contributors rather than passive recipients of care. However, sustaining such initiatives poses challenges, particularly in low-resource settings where leadership and funding are inconsistent. Success depends on locally embedded coordination, adaptive design, and relational trust. By reframing Ageing in Place as a community-based process, Ibasho offers a practical and adaptable framework for inclusive ageing that emphasizes participation, cultural sensitivity, and resilience, while still facing limitations like dependency on local commitment and vulnerability to fluctuating resources. Nevertheless, it illustrates how community-driven approaches can expand conventional understandings of Ageing in Place by foregrounding social processes and community-driven forms of support.

  • New
  • Research Article
  • 10.1016/j.cogsys.2026.101458
(Mis)perceiving others: toward a second-person science of schizophrenia
  • Jun 1, 2026
  • Cognitive Systems Research
  • Leonardo Zapata-Fonseca + 7 more

Negative symptoms and social difficulties are a source of disability in patients with schizophrenia, yet they are less studied compared to delusions and hallucinations. We draw inspiration from calls to view schizophrenia as a disorder of social interaction, and argue that one way to operationalize such a second-person approach is in terms of the perceptual crossing paradigm. In this paradigm of social haptics, two participants are tasked to find each other’s avatar in an invisible virtual space that also contains other distracting objects. There are no explicit social cues and participants therefore need to learn how to distinguish between different affordances for interaction so as to disambiguate when haptic feedback is in fact mediated social touch. To test the feasibility of this experimental approach, we conducted a small pilot study consisting of seven schizophrenia patients paired with control participants. Both participant groups were able to solve the task, and preliminary findings are largely consistent with the literature on perceptual crossing. We propose hypotheses for future work with this paradigm in the context of social psychiatry, bringing to the fore the possible role of error and uncertainty in social interaction dynamics.

  • New
  • Research Article
  • 10.1111/papt.70051
Supporting sexual minority adolescents: A critical realist thematic analysis of psychological therapists' experiences.
  • Jun 1, 2026
  • Psychology and psychotherapy
  • Paris Young + 3 more

Sexual minority adolescents experience elevated rates of psychological distress, influenced by societal stigma and heteronormativity. Psychological therapists can play a key role in supporting identity development and advocating for systemic change. This study explored therapists' lived experiences of working with sexual minority adolescents, attending to both reported experiences and deeper social mechanisms. A qualitative study using a critical realist approach to thematic analysis that integrated inductive coding with abductive and retroductive theorising. Seven UK-based psychological therapists participated in semi-structured interviews conducted between January and March 2024. Analysis examined both dispositional and inferential themes, exploring both surface experiences and deeper social mechanisms shaping participants' experiences. Three dispositional themes were generated: (1) therapists' experiences of socio-environmental forces shaping adolescent sexuality; (2) the striving to offer attuned, responsive therapy; and (3) the influence of socio-political tensions on navigating identity-related work. The analysis suggests that the therapeutic process functions as a relational shield against conflicting structural forces. By centring this relational process to navigate developmental fluidity, effective practice relied on agential striving to protect the adolescent's narrative from external agendas. This involved fundamental clinical skills: creating a non-judgemental space, using compassionate curiosity, and maintaining awareness of relational pulls and assumptions. Socio-political structures are often enacted within the therapy room, presenting both challenges and opportunities for therapeutic work. The findings suggest that therapy functions as a mediating space, shielding adolescents' developing identities from polarisation and stigma. This highlights the ethical necessity of maintaining a protected process in a politicised climate.

  • New
  • Research Article
  • 10.1016/j.ssaho.2026.102557
Qualitative perspectives of age-friendliness: Findings from group discussions in four European cities
  • Jun 1, 2026
  • Social Sciences & Humanities Open
  • Milena Maj + 9 more

The active involvement and participation of older individuals in decision-making processes are fundamental principles for creating age-friendly environments. There is a need to conduct a qualitative multi-centre, multi-country analysis of age-friendliness in order to better understand the differences in the experienced positive and negative features according to older people. The goal of the current study is to present and discuss the perspectives of older individuals who participated in a series of group discussions on the experienced age-friendliness of four cities in the European Union: Kraków and Wrocław (Poland), The Hague (the Netherlands), and Bucharest (Romania). The participants discussed each of the dimensions, using examples from their daily life, and recorded their concerns and challenges on living in their urban communities. Key themes include the importance of social participation, intergenerational respect, access to healthcare, transportation challenges, and civic engagement. While local concerns varied, common issues such as feeling ‘invisible’ and barriers to informal social interaction emerged. The research combines qualitative insights with cross-country comparison, offering a nuanced understanding of ageing in urban contexts. Findings highlight the need for inclusive urban policies that reflect older citizens' lived experiences and support their active participation in community life. • The qualitative views from older adults provide an overview of age-friendly experiences. • Perceptions of various domains of city by older persons can help to tailor ageing policies. • The use of qualitative methods enable to better understand local context of the age-friendliness.

  • New
  • Research Article
  • 10.1016/j.ssmph.2026.101924
Gender differences in the long-term impact of early-life exposure to war on physical and mental health: Evidence from China.
  • Jun 1, 2026
  • SSM - population health
  • Zhen Zhang + 4 more

Gender differences in the long-term impact of early-life exposure to war on physical and mental health: Evidence from China.

  • New
  • Research Article
  • 10.1016/j.jad.2026.121391
Health and well-being after spousal loss among older men and women.
  • Jun 1, 2026
  • Journal of affective disorders
  • Kenjiro Kawaguchi + 7 more

Health and well-being after spousal loss among older men and women.

  • New
  • Research Article
  • 10.1097/mrr.0000000000000704
Methods for assessing coactivation in the lower limb muscles during overground walking poststroke: a systematic review.
  • Jun 1, 2026
  • International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation
  • Clément Doumenc + 5 more

Recovering an independent and efficient gait is essential for social participation and quality of life after a stroke. However, muscle coactivation (MCo) is considered a major limiting factor. This study aimed to systematically review the methods used to assess lower limb MCo during overground walking in stroke survivors. Major scientific databases were searched, and 19 articles were ultimately included. Data extraction focused on gait cycle detection, surface electromyograph (sEMG) acquisition settings, signal processing, and MCo calculation, specifically the coactivation index (CoI) and coactivation duration (CoD). Results revealed variability in methodological choices across all stages required to assess MCo. Regarding acquisition and processing approaches, several commonalities were identified, such as the use of Surface ElectroMyoGraphy for the Non-Invasive Assessment of Muscles guidelines for electrode placement and the application of a single threshold for muscle activation detection. Conversely, significant variability was found in the selection of gait cycle phases and signal filtering techniques. Furthermore, this heterogeneity was particularly pronounced in the final MCo calculation stage. Specifically, CoI represents the most diverse approach, with seven distinct formulas, which prevents the proposal of a common method. Conversely, CoD measurement shared a unique calculation formula associated with more common methodological elements, allowing for the proposal of a standardized approach. This common method was also aligned with current sEMG recommendations. Overall, although standardized methods have been established to assess the MCo, neither CoI nor CoD has yet undergone sufficient reliability testing to support routine clinical use. This review underscores the need for methodological rigour to improve the comparability of MCo assessments in stroke rehabilitation research.

  • New
  • Research Article
  • 10.1016/j.psychres.2026.117089
Age-specific variations and emerging trends in behavioral activation interventions: A keyword network analysis.
  • Jun 1, 2026
  • Psychiatry research
  • Mose Hwang + 3 more

This study aimed to explore the age-specific characteristics and research trends of Behavioral Activation (BA) interventions through a Keyword Network Analysis (KNA). A comprehensive review of experimental studies applying BA was conducted, covering literature published between 2003 and 2023. Keywords were extracted by age group children and adolescents, adults, and older adults and analyzed using network metrics and cohesive structure evaluation. BA interventions were consistently associated with reductions in depression and anxiety symptoms and improvements in quality of life across all age groups. However, the focal areas of BA varied by age: in children and adolescents, BA-related keywords were linked to emotional regulation and health disparities; adult-focused studies emphasized distress management, digital healthcare integration, and overall wellbeing; among older adults, BA was associated with increased activity scheduling, greater social participation, and reduced social isolation. Across all groups, depression emerged as the most central keyword. These age-specific patterns were further clarified through cohesive structure analysis, which revealed thematic differences across developmental stages and underscored the need for age-tailored BA strategies. Specifically, BA implementation tended to emphasize emotional and social skills in adolescents, stress regulation and digital self-management in adults, and structured activity planning in older adults. Together, these findings support the potential of BA as a flexible, transdiagnostic mental health intervention that can be integrated across the lifespan.

  • New
  • Research Article
  • 10.1186/s12889-026-27520-z
Exploring post-Covid-19 condition in children and young people 3.5years after infection: a mixed-methods analysis from the CLoCk study.
  • May 19, 2026
  • BMC public health
  • Emma Dhir-Hewitt + 16 more

Comprehensive data on the persistence of Post-COVID-19 Condition (PCC; also known as Long COVID) and its impact on children and young people (CYP), incorporating their own perspective, is crucial to enhance our understanding of the condition, improve service provision and inform clinical management. We examine long-term symptoms, health, and well-being among CYP persistently meeting PCC criteria up to 3.5-years after SARS-CoV-2 infection (when they were aged between 11-to-17-years), using a mixed-methods approach. 68 CYP from the CLoCk study who persistently met PCC criteria at 3- (April-June 2021), 6- (July-September 2021), 12- (January-March 2022), and 24-months (January-March 2023) post-infection were invited to complete an additional follow-up (October-November 2024). The survey assessed current symptoms and health status using validated measures, and symptom experiences through open-text responses. Quantitative data were analysed descriptively; qualitative data were analysed using thematic framework analysis. Findings were integrated using a convergent parallel design. 50 CYP completed the survey; of these 42 (84%) responders continued to meet the PCC definition 3.5-years post-infection. All 42 (100%) reported tiredness and 34 (81%) reported 5 + symptoms 3.5-years post-infection. Qualitative analysis reinforced tiredness as a central symptom, alongside co-occurring symptoms that impact daily life. While quantitative and qualitative findings largely converged, context as to why CYP reported high levels of impact were only available from qualitative data. CYP with PCC persisting for 3.5-years post-infection experience multiple symptoms of wide-ranging severity and disruption to daily life, education and social participation.

  • New
  • Research Article
  • 10.63371/ic.v5.n2.a1123
Artes Aplicadas y Desarrollo Creativo en Mujeres Adultas Mayores: Una Experiencia Comunitaria en República Dominicana
  • May 19, 2026
  • Ibero Ciencias - Revista Científica y Académica - ISSN 3072-7197
  • Lamec Antonio Fabián Vásquez + 1 more

This research analyzed the contribution of applied arts workshops to the creative development of older adult women belonging to the Fundación Adultos Mayores por unos Años Felices, located in Santiago de los Caballeros, Dominican Republic. The study aimed to understand how artistic activities contribute to the emotional, social, and creative strengthening of women between 65 and 85 years old in a vulnerable community context. Methodologically, a qualitative descriptive and interpretative approach was employed, using semi-structured interviews, participant observation, and analysis of artistic productions created during the workshops. The sample consisted of 9 older adult women actively participating in the applied arts workshops. Atlas.ti software was used for data organization and analysis, allowing the construction of emerging categories and semantic networks derived from participants’ testimonies. The findings revealed significant improvements in dimensions related to self-esteem, emotional expression, social integration, creative skills, and personal autonomy. Participants also reported feelings of usefulness, recognition, and well-being associated with their involvement in artistic activities. The semantic networks developed from the analysis demonstrated relationships between creativity, community participation, and emotional strengthening. The study concluded that applied arts workshops constitute an effective strategy for promoting active aging and creative development in older adult women, fostering social inclusion, participation, and comprehensive well-being in community settings.

  • New
  • Research Article
  • 10.1038/s41598-026-52321-0
Development and preliminary psychometric evaluation of a context-specific patient-reported Schizophrenia Disease Burden Scale incorporating socioeconomic and cultural contexts.
  • May 18, 2026
  • Scientific reports
  • Abishek J R + 3 more

Schizophrenia is a chronic, disabling neurocognitive disorder associated with functional, psychological and social burden. Existing patient-reported outcome measures (PROMs), for schizophrenia have largely been developed in non-Indian settings and may not fully capture the lived experiences, contextual realities, and culturally relevant burden constructs of people receiving care in Tamil Nadu. This study aimed to develop and preliminarily evaluate a context-specific Schizophrenia Disease Burden Scale (SDBS) grounded in qualitative inquiry and tailored to Tamil Nadu. A mixed-methods design was adopted. Items were generated through a qualitative in-depth interview with individuals diagnosed with Schizophrenia (n = 10), followed by content validation by an expert panel (n = 11). The resulting questionnaire was administered to 325 participants by initial consecutive sampling followed by snowball sampling. Exploratory factor analysis (principal component analysis with varimax rotation) was performed to identify underlying domains, and internal consistency was assessed using Cronbach's alpha. The initial version of the 65-item scale demonstrated good content validity (S-CVI = 0.87) and high internal consistency (Cronbach's alpha = 0.922). Following the item reduction, a 24-item instrument was obtained with acceptable sampling adequacy (Kaiser-Meyer-olkin value = 0.744) and internal consistency of 0.910. Six domains were identified through exploratory analysis. Confirmatory factor analysis was performed as a preliminary internal structural assessment; however, independent validation is required. The SDBS provides a culturally relevant measure of disease burden that incorporates context-specific domains such as family support, social participation and socio-economic challenges. This initial validation supports its potential utility in Indian settings; however, further studies are required to establish external validity, test-retest reliability and broader applicability across diverse populations.

  • New
  • Research Article
  • 10.1186/s12889-026-27683-9
Interventions against loneliness and social isolation in older adults\u2013 a systematic review
  • May 18, 2026
  • BMC Public Health
  • Johanna Bergstr\Xe4Sser + 3 more

BackgroundLoneliness is a growing health and social challenge. The COVID-19 pandemic boosted feelings of loneliness for many people. To combat loneliness, a wide range of interventions have been developed and evaluated for their efficacy and effectiveness. As a result, many new interventions to alleviate loneliness have been developed, especially technological interventions. Therefore, the objective of this study was to conduct a comprehensive and up—to-date systematic review to identify interventions aimed at loneliness and social isolation among adults, 60 years and older published during or post-pandemic.MethodsA comprehensive literature search was conducted for studies between 2020 and 2024 across five online databases: MEDLINE via PubMed, Web of Science, Scopus, Cochrane Library, and CINAHL. Title and abstract screening, critical appraisal of the studies, and data extraction were performed by two independent reviewers. A narrative approach was adopted to assess and integrate the diverse findings from the research.ResultsUltimately, 79 studies were included in this systematic review. The results are structured based on the categorization of the interventions, which includes differentiation between analogue interventions, technological interventions and multicomponent (analogue and technological) interventions. The effectiveness of analogue interventions, particularly community-based interventions such as group meetings, social participation programs, and educational or psychological interventions, tended to be superior to that of technological interventions.ConclusionsThe combination of analogue and technological interventions in particular produced promising results regarding a decrease of loneliness. Specific interventions must be tailored to the target group and setting and regularly reevaluated. The aim now should be to implement these interventions comprehensively and monitor their effectiveness over several years. Future research should focus on differentiating the circumstances under which various forms of intervention are effective.Trial registrationPROSPERO systematic review registration: CRD42024538755.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12889-026-27683-9.

  • New
  • Research Article
  • 10.1177/20552076261453103
Artificial intelligence development and subjective well-being of older adults: Evidence from the China longitudinal aging social survey
  • May 16, 2026
  • Digital Health
  • Fulei Jin + 1 more

ObjectiveWith the intensification of population aging, the subjective well-being of older adults has become a topic of social concern. Meanwhile, artificial intelligence (AI) is penetrating various fields of society and transforming the living environment of older adults. However, research on the association between AI and the subjective well-being of older adults remains relatively scarce, and this study aims to explore the relationship between AI development and their subjective well-being.MethodsBased on the data from the China Longitudinal Aging Social Survey (CLASS), this study uses a two-way fixed effects model to examine the association between AI development and the subjective well-being of older adults. For robustness checks, it employs methods including double machine learning (DML), instrumental variable approach, variable replacement, addition of control variables, and adjustment of clustering levels.Results(1) AI development is positively correlated with the subjective well-being of older adults. (2) Older adults’ use of elderly care services and their social participation are the channels through which AI development is associated with improved subjective well-being among older adults. (3) The digital literacy of older adults plays a positive moderating role. (4) The positive association between AI development and subjective well-being is significantly larger in magnitude for the old-old group than for the young-old group.ConclusionThis study provides robust empirical evidence for a positive association between AI development and the subjective well-being of older adults. Based on this, efforts should be made to promote the in-depth integration of AI with elderly care services, expand AI-enabled channels for social participation, launch initiatives to improve older adults’ digital literacy, and refine policy safeguards for AI-assisted elderly support.

  • New
  • Research Article
  • 10.1097/md.0000000000048912
Cancer and depression in middle-aged and elderly Chinese: The mediating role of sleep quality and the moderating role of social participation diversity \u2013 Evidence from CHARLS 2018
  • May 15, 2026
  • Medicine
  • Yingdan Bai + 4 more

Depression is highly prevalent among individuals with cancer, yet the pathways remain incompletely understood. This study utilized cross-sectional data from the 2018 wave of the China Health and Retirement Longitudinal Study. Cancer was identified from harmonized and health files. Depression was assessed using the 10-item Center for Epidemiologic Studies Depression Scale. Sleep quality was proxied by a single item, which captures one dimension of sleep disturbance. Social participation diversity was constructed from 6 types of activities and summarized as a variety index. Covariates included age, sex, education, partnership, urban residence, retirement, drinking, smoking, and comorbidities. Mediation analysis was conducted using nonparametric bootstrap with 5000 resamples. Moderation was tested via linear models incorporating a sleep quality × social participation interaction term. The analytical sample included 17,550 adults aged 45 years and above. The total effect of cancer on depression was 2.157 (95% confidence interval [CI]: 0.458–3.856). The indirect effect mediated through poor sleep quality was 0.265 (95% CI: 0.028–0.587, P = .026), accounting for 12.29% of the total effect, indicating that sleep quality partially statistically mediated the relationship between cancer and depression. The direct effect of cancer on depression was 1.892 (95% CI: 0.246–3.538, P = .024). Social participation diversity attenuated the path from sleep to depression (sleep × participation interaction: β = −0.134, standard error = 0.043, P = .002). Among Chinese adults aged 45 and older, sleep quality statistically accounted for a modest portion of the cancer–depression association, and social participation diversity modified the sleep–depression association. Given the cross-sectional design and the single-item sleep measure, findings should be interpreted cautiously with respect to temporality and causality. Interventions addressing sleep problems and supporting social engagement warrant further evaluation in longitudinal and interventional studies.

  • New
  • Research Article
  • 10.1080/09638288.2026.2660001
Congenital myopathies in adult patients: lived experiences and coping mechanisms
  • May 15, 2026
  • Disability and Rehabilitation
  • Lizan Stinissen + 10 more

Purpose To study the impact of congenital myopathies in adult patients’ lives and their coping mechanisms to live a fulfilling life, in an era with no treatments on the horizon. Methods We conducted a qualitative study with semi-structured interviews among Dutch adult patients with congenital myopathies, exploring their experiences of living with the condition. Data from the interviews were analysed through open coding and thematic analysis using Atlas.ti version 24.0.0. Results Sixteen adult patients (50% females; age range of 26–72 years) were interviewed during January-April 2024. Six main themes were identified: disease management, self-management, personal development, social participation, support, and illness acceptance. Coping strategies were related to aspects of the disease, personal traits of patients and their social environment. Conclusion This study provided a comprehensive perspective going beyond physical functioning, that also considered personal, social, and environmental factors that are crucial for coping with the disease and understanding its impact. These experiences offer valuable insights for clinicians, patients and family members, helping to support patients in finding fulfilment in life.

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