Local Social Policies Research Articles

Social entrepreneurship education local authorities historical roots and future strategies

Social enterprises are the subject of great interest from authorities at various levels, academia, business promotion organizations. Policies and publications are growing at an impressive pace as high hopes are placed on them to solve painful social problems. Social enterprises have been studied in different dimensions. Individual participants of an ecosystem have been analyzed, including the potential of universities to promote social entrepreneurship and increase the efficiency of their management. A large part of the social problems, to which the activity of social entrepreneurs is directed, are within the prerogatives of local authorities. However, the role of support provided by universities and their potential to improve local social policies through social entrepreneurship is rarely explored and evaluated. In this regard, this publication is aimed at tracing the development of social entrepreneurship in our country in the context of education and local authorities, and on this basis, some generalizations are made, which can be a starting point for developing future strategies in the educational system to support social entrepreneurs and local authorities in the effort to find an answer to certain social challenges.

Local Politics and Social Policy in China: Let Some Get Healthy First by Kerry E Ratigan

Local Politics and Social Policy in China: Let Some Get Healthy First <i>by Kerry E Ratigan</i>

A Needs Assessment for a Local Social Policy Data Sharing Program

Planners seek collaborative and diverse strategies to address complex challenges across Canada. In the Region of Waterloo, local governments and stakeholders adopted The Waterloo Region Community Data Program (WRCDP), a social policy data-sharing system for information on economic and social development. This study examined the needs of Community Data Program (CDP) users to investigate whether CDPs are utilized effectively. We considered how optimal use of CDP data may advance planning to resolve structural and behavioral challenges in municipalities. We surveyed 17 participants from the WRCDP to assess needs of organizational members regarding accessing data, data analysis, and networking. Participants expressed enthusiasm for the CDP’s potential but lacked training in accessing and analyzing available data. A limitation of this study is small participant sample size and how results may not be generalizable to other locations. Organizational members remained optimistic about the system’s potential for planning and policy when provided with the necessary support.

Local Service Centres as Facilitator and Driving Force For Caring Neighbourhoods In The City Of Antwerp: An Important Key To Realise Integrated Care

Summary: Local service centres (LSC) play an essential role in realising a caring neighbourhood, which relies on three pillars (1) neighbourhood participation and inclusion, (2) linking informal and formal care, (3) intersectoral cooperation between welfare and care partners and partners from other domains in a network aimed at prevention, health promotion and the provision of integrated care and support with a focus on quality of life.&#x0D; A caring neighbourhood for everyone and all ages: Living at home in the familiar neighbourhood for as long as possible is an ambition for most people, including those with care and support needs. Preferably in a safe, social and inviting neighbourhood where all basic facilities are available (GP, home care, bakery, butcher, pharmacy, bank, etc.). Today, this is no longer obvious in both rural and urban settings. &#x0D; Today, when care and support are needed, we face an ever-increasing shortage of professional care staff. Therefore, besides professional care, informal care and support in the broad sense has become indispensable. &#x0D; LSC as a facilitator and driving force for caring neighbourhoods:To keep people independent and self-reliant for as long as possible, a kind of platform or hub is ideally needed in every neighbourhood or district, on the one hand to keep people active and alert (socially, physically and psychologically) through activities in various areas and, on the other, to initiate, support and stimulate informal care and support; and to ensure that all initiatives in this area can be secured and perpetuated. &#x0D; The LSC can play a central role in this, among other things as a meeting centre where social encounters and social participation are facilitated and stimulated; as a platform for consultation between welfare and care actors, but also as an advice and information centre where, among other things, health skills are strengthened and, where necessary, referral to the appropriate care and welfare actor takes place.&#x0D; The LSC is therefore an important lever in developing a caring neighbourhood. &#x0D; LSC in the city of Antwerp as an example&#x0D; &#x0D; Almost every neighbourhood in the city of Antwerp has a local service centre. Based on the results of a quantitative and qualitative neighbourhood analysis, a multi-year planning is drawn up in cooperation with all relevant actors in the neighbourhood. This also takes into account local social policy priorities.&#x0D; The LSC acts as a platform where initiators can meet and cooperate. This may concern initiatives on informal care support; organising and coordinating volunteer work; supporting civic initiatives; initiating and stimulating a caring attitude among citizens. But also around activities that can prevent loneliness e.g. taking lunch or participating in recreational, informational or exercise activities.&#x0D; Key learning points and concerns: &#x0D; - Diversity in a city and the importance of a culture-sensitive operation &#x0D; - Quantitative and qualitative staffing of LSC&#x0D; - A caring attitude between citizens as a basic requirement&#x0D; - Informal and formal actors: a symbiotic relationship&#x0D;

The Political Regulation Wave: A Case of How Local Incentives Systematically Shape Air Quality in China. By Shiran Victoria Shen. New York: Cambridge University Press, 2022. 161p. $99.99 cloth, $29.99 paper. - Local Politics and Social Policy in China: Let Some Get Healthy First. By Kerry E. Ratigan. New York: Cambridge University Press, 2022. 200p. $99.99 cloth.

The Political Regulation Wave: A Case of How Local Incentives Systematically Shape Air Quality in China. By Shiran Victoria Shen. New York: Cambridge University Press, 2022. 161p. $99.99 cloth, $29.99 paper. - Local Politics and Social Policy in China: Let Some Get Healthy First. By Kerry E. Ratigan. New York: Cambridge University Press, 2022. 200p. $99.99 cloth.

‘We Reach out but we Also Expect Something in Return’: Social Work Engaging with Roma People in Temporary Container Homes at the Edge of the City

Abstract In this article, we critically explore the research findings of a qualitative study of local social policy and work interventions, called ‘the post-mobile project’ in Ghent, Belgium. The project provided temporary housing for families in container units, accompanied by mandatory integration assistance, and was implemented as a potential solution for Romanian Roma families after the dismantlement of two informal settlements in 2020. Our qualitative study explores the underlying ontological assumptions of the social work interventions in this project, and aims to gain insights into the role of contemporary social work practice in Belgium and its impact on advancing or hindering the pursuit of social justice within this Roma community. The study is based on an ethnography as a multi-method approach. Participant observations are complemented by document analysis, semi-structured interviews and focus groups to gain an in-depth understanding of the divergent experiences and opinions of different stakeholders involved in the interventions. The findings reveal different ontological frameworks regarding the way the social problem is defined, the project’s goals and the principles guiding practice, thus exposing tensions between the local policy-makers and the social justice orientation of social work practitioners.

The Bureaucratic Trap: Registered Residence and Sedentist Bias in Italian Social Cohesion Policies for Roma and Sinti

Abstract This article addresses the issue of sedentist bias in development by exploring nuances and contradictions in local social cohesion policies that target the Roma and Sinti population in Italy. European cohesion policies are embedded in a decades-long history of development discourses aimed at economically underdeveloped regions within Europe as well as vulnerable social groups. The latter include groups like Roma and Sinti, who, although historically part of the European social fabric, are not always treated as such due to their alleged legacy of nomadism. We address interactions and hiccups between the policies for Roma/Sinti implemented by Italian regions and municipalities and the directives for Roma inclusion stipulated by national and EU frameworks. We argue that the translation of these directives meets and intersects with a pre-existing legislative framework consisting of regional policies for Roma and Sinti based on soft recognition and mainstream policies that revolve around an administrative milieu that aims at controlling identity and mobility within national borders. We thus reflect on registered residence, an administrative device that is used as a selective tool for granting access to citizenship rights, and on its effects on Italy's local social cohesion policies for Roma and Sinti. The implementation of EU and national frameworks for Roma cohesion, which is our main argument, can paradoxically contribute to the exclusion and marginalisation of mobile peoples in Italy. This is due to a sedentist framework in which the mechanism of registered residence, a bureaucratic trap for many Roma and Sinti, becomes extremely apparent and prompts a series of more implicit biases in local social policies.

Envisioning better opportunities for young-system-survivors: A critical dialogical study among occupational therapists promoting inclusive practices in Germany

ABSTRACT Despite current inclusion discourses in Germany, specific groups of children and adolescents with mental health problems are identified by healthcare services as “too difficult to manage”, creating varied exclusion processes. In this study, the term young-system-survivors is used for destigmatization purposes. While occupational science discourses suggest that social inclusion should be addressed at the level of social structures, institutions, and norms, local social policies limit German healthcare practitioners from engaging with young-system-survivors to address both complex social and health issues. Using a critical dialogical approach, this study explored how occupational therapists envision inclusive practices promoting young-system-survivors participation in Germany. The data were collected through individual dialogical interviews and two focus groups with eight German occupational therapists and analysed using reflexive thematic analysis. The findings are presented as one overarching theme: The struggle of young-system-survivors to have real opportunities, composed of three subthemes a) Affirming a client-centred stance and continuity, b) Creating possibilities by addressing context-specific demands, and c) Reflecting and enacting advocacy. The findings illustrate how the participants reflect on their fundamental humanistic stance and their occupational perspective to demand a more socially responsive practice. Inspired by scholars developing the epistemologies of the south, this study draws on the concept of Social Occupational Therapy to widen the prospect of establishing multidimensional aspects of social inclusion and calls for collaborative practices to foster the visibility and consideration of young-system-survivors.

A Intervenção Social com Pessoas em Situação de Sem-Abrigo: O papel das políticas sociais de âmbito nacional e local

The homelessness phenomenon presents itself as a problem that, even in societies with higher levels of socioeconomic development, has drawn political attention because it constitutes the most serious manifestation of social exclusion, which has provided the design of national and local social poli-cies in recent years.This article results from the reflections of a curricular internship in Social Work and intends to contribute to the systematization of the social policy instruments aimed at homeless people at the national and local levels. For this purpose, the social problem under analysis was con-ceptualized, political approaches and proposals at the national and local levels were identified, and the intervention of social workers was analyzed considering the main principles, models and ins-truments and systematized the intervention contexts of Social Work in the city of Porto. Finally, the necessity to deepen the study of this theme is reiterated, using contributions from different discipli-nary areas, with a special focus on Social Work, its potentialities and limitations.

SARS-CoV-2 surveillance-based on municipal solid waste leachate in Brazil.

Municipal solid waste leachate-based epidemiology is an alternative viral tracking tool that applies fresh truck leachate as an early warning of public health emergencies. This study aimed to investigate the potential of SARS-CoV-2 surveillance based on solid waste fresh truck leachate. Twenty truck leachate samples were ultracentrifugated, nucleic acid extracted, and real-time RT-qPCR SARS-CoV-2 N1/N2 applied. Viral isolation, variant of concern (N1/N2) inference, and whole genome sequencing were also performed. SARS-CoV-2 was detected on 40% (8/20) of samples, with a concentration from 2.89 to 6.96 RNA Log10 100mL-1. The attempt to isolate SARS-CoV-2 and recover the whole genome was not successful; however, positive samples were characterized as possible pre-variant of concern(pre-VOC), VOC Alpha (B.1.1.7) and variant of interest Zeta (P.2). This approach revealed an alternative tool to infer SARS-CoV-2 in the environment and may help the management of local surveillance, health, and social policies.

Policy transition: public sector sport for development in Northern Ireland

ABSTRACT Globally, governments are implementing public sector reform to address declining budgets and public trust to improve programme efficiency and effectiveness. Sport has become ever more relevant with regards local, national and international social policy as part of an enhanced role for the third sector in tackling a plethora of societal issues. This article attempts to explore, the success (or otherwise) of sport for development (SfD) programmes transitioning positive outcomes from a micro and meso level to the macro level in Northern Ireland. Three management models (Outcomes-based accountability, Organisational capacity and Resource dependency theory) are used to establish the level of efficiency and effectiveness of SfD programmes in Northern Ireland, based on semi-structured interviews with a range of policy and delivery stakeholders. This article identifies potential areas of conflict at the intersection between policy and practice which limit the translation of successful project outcomes. The ambiguity of purpose combined with the absence of a population level evaluation model and financial reliance perpetuates task-based projects at the expense of sectoral outcomes. In turn, individuals are faced with a ridged multi-agency offering without a multi-agency approach. This article recommends a government-wide indicator for sport and physical activity linked to an overarching sport-related strategy, which clearly defines language, purpose and responsibilities across the public sector. One which builds on existing structures to support transition (individual and organisational) across the three identified interlinking phases of sport.

Democratic Dead Spots: Local Elections and Human Development in Brazil

ABSTRACT Democracy’s proponents argue that decentralisation improves service delivery, expands local accountability, and engages citizens in public life. However, the combination of democratisation and decentralisation sometimes sustains subnational authoritarianism, resulting in differential redistribution of power that limit citizens’ ability to pursue and secure public goods. In this article we ask: To what extent do authoritarian enclaves affect well-being? Few studies have systematically examined how basic democratic failures affect human development outcomes at subnational levels. We address this gap by investigating the effects of local “democratic dead spots” in Brazil. This approach yields the first large-scale quantitative analysis of the consequences of subnational authoritarianism for human development. Our unique dataset covers Brazil’s 5,570 municipalities from 2006 to 2018 and lets us estimate the effects of local elections on human development over time and across space, while controlling for common explanations for human development (e.g. local governance, wealth, social policy, and partisanship). We find that local democratic dead spots are associated with systemically low levels of human development performance. Following uncompetitive elections, health outcomes are systemically lower over five years: an entire mayoral term and one year beyond in comparison to other, very similar municipalities. Education outcomes are also systemically lower, but the effect does not extend beyond one mayoral term. The cumulative results suggest that uncompetitive elections undermine human development, at the very least in the short to medium term.

TÜRKİYE’DE GÖÇMEN VE MÜLTECİ ENTEGRASYONU: POLİTİKALAR, UYGULAMALAR VE ZORLUKLAR

Amaç: Bu makale, Türkiye’de uygulanan entegrasyon politikalarının genel bir değerlendirmesini sunmayı amaçlamaktadır. Tarihsel bir değerlendirmeden sonra, Suriye’den kitlesel zorunlu göçün yaşandığı 2011 yılı sonrasında başta çalışma, eğitim, istihdam ve sağlık olmak üzere sosyal uyum için yapılan uygulamaları incelemektedir. &#x0D; Yöntem: Bu çalışma ikincil kaynaklara dayanarak, Türkiye’de göçmen ve mültecilere yönelik uygulanan entegrasyon politikalarının tarihsel ve eleştirel bir perspektifle incelenmesini içermektedir. Bu amaçla hem konuyla ilgili akademik literatür taranmış, hem de kamu kurumları, çeşitli kuruluşlar ve STK’lar tarafından üretilen raporlardaki veriler kullanılarak bir değerlendirme yapılmıştır.&#x0D; Bulgular: Türkiye, 19. yüzyılın sonlarından itibaren tarihsel, kültürel ve coğrafi bağı olan geniş bir coğrafyadan göç almaktadır. Bu uzun göç tarihi boyunca hem gelen gruplar değişmiş, hem de uygulanan göç ve entegrasyon politikaları farklı olmuştur. 2011 yılından itibaren Suriyeli mültecilerin gelişiyle, Türkiye dünyada en fazla mülteciye ev sahipliği yapan ülke konumuna gelmiştir. Bugün resmi verilere göre, dört milyona yakın Suriyelinin ve farklı kategorilerde kayıtlı iki milyona yakın göçmen ve sığınmacının varlığı, entegrasyon ve sosyal uyum politikalarına duyulan ihtiyacı arttırmaktadır. 1980’ler ve 2010’lar arası dönemde göçmen ve mültecilere yönelik sistematik bir entegrasyon politikası yokken, son dönemde Suriyeliler için, Avrupa Birliği fonlarının da desteğiyle, “yukarıdan aşağıya” ve “çekingen entegrasyon” diyebileceğimiz bazı çabalar ortaya konmaktadır. Ancak Türkiye’nin son dönemde içinden geçtiği siyasi kutuplaşma ve ekonomik krizle beraber yükselen ayrımcılık ve ırkçılık, kabul ve entegrasyon kapasitesini azaltmaktadır. Gelişlerinin üstünden on yıl geçmişken, Türkiye toplumunda Suriyeli mültecilerin “geçici” olduğu, yani bir gün kendi ülkelerine geri dönecekleri fikri hâlâ yaygındır. Bu geçicilik ve belirsizlik algısı, sağlık ve eğitim gibi alanlarda önemli ilerlemeler kaydedilmiş olmasına rağmen, entegrasyon politikalarının etkisini zayıflatmaktadır. &#x0D; Özgünlük: Bu makale, Türkiye’de göçmen ve mültecilere yönelik entegrasyon politika ve uygulamaları önce tarihsel bir perspektifle ele alıp, daha sonra, son on yılda kitlesel zorunlu göçle gelen Suriyelilerin entegrasyonuna yönelik durumu hizmet alanlarına odaklanarak değerlendirmesiyle göç çalışmaları alanına özgün bir katkı sunmayı amaçlamaktadır.

Motives for security and sexual activity among single individuals at the onset of the COVID-19 pandemic

ABSTRACT Amidst a global pandemic, survival needs become salient and the ability of individuals to regulate feelings and actions might be particularly relevant to protecting themselves from harm. Drawing from Regulatory Focus Theory individuals who are more focused on prevention are also more likely to enact health-protective behaviours, including sexual health behaviours, because they are more aware of threats. Extending this reasoning to the COVID-19 pandemic, we conducted a pre-registered longitudinal study with 174 individuals from 23 countries (M age = 30.66, SD = 11.81; 77.6% women), to examine the role of regulatory focus in predicting the sexual activity of single individuals. We assessed demographic information, regulatory focus, and personality traits at baseline (T1), perceived threats two weeks later (T2), and sexual activity indicators two weeks later (T3). As hypothesised, results showed that single individuals who reported a greater focus on prevention at the onset of the pandemic perceived more pandemic-related threats and, in turn, reported less frequent sexual activity. These effects were consistent even when controlling for promotion (i.e. pleasure motives), personality, geographic location, local social distancing policies, gender, and sexual orientation. Findings are discussed considering their implications for the sexual functioning and sexual health of single individuals.

Keeping the older population and their informal carers healthy and independent using digital technology: a discourse analysis of local policy

AbstractThe general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care.

A Meta-Analytic Framework for Developing Protocols to Attend Child and Adolescent Victims of Sexual Violence.

Violence against children and adolescents is a global public health problem. In Brazil, there are challenging boundaries for professionals in the protection network in general and for health professionals in particular. Moreover, among other factors, there is the challenge of referral, due to weaknesses in decision making, given the nature of sexual violence and how it is managed by healthcare services. This study aims to propose a Meta-Analytic framework to support the referral of young victims of sexual violence, considering levels of severity, independent of factors such as how protection systems are structured and managed and the local laws in force. We propose a Meta-Analytic approach, developed using the fundamentals of Delphi and DPSIR (Drivers, Pressures, State, Impact, and Response Model of Intervention), from the perspective of Value-Focused Thinking. The Delphi method was structured in two stages: the first stage aimed to identify and classify typical cases of sexual violence; the second stage used the DPSIR model, with the aim of identifying the decision criteria for typical cases that occur in a given municipality. The main outcomes are: (i) the application of the modified Delphi participatory method within the context of local social policies; (ii) the construction of a value tree based on Value-Focused Thinking; and (iii) the identification and systematization of criteria that most interfere with the evaluation of cases of sexual violence, which can be used for multi-criteria decision making.

Integrated-rights practice and partnerships with judicial services: towards a socio-legal practice?

ABSTRACT In Flanders, a renewed Decree on Local Social Policy (2018) introduced the concept of “Integrated-Rights Practice” (IRP). In brief, IRP aims to guarantee social rights by creating local interorganizational networks that foster generalist, pro-active, outreaching, strengths-based and participative social work interventions (Boost et al., 2018). In our paper, we will focus on an ongoing project in which IRP is applied to the specific field of socio-juridical practice in Antwerp. In this project, interorganizational collaboration between different social work services is expanded with partners from the field of justice (courts, lawyers, magistrates, …) in an effort to lower existing thresholds that impair access to justice and lead to non-take-up of rights. In order to evaluate this innovative practice, we use the CAIMeR-model developed by Blom and Morèn (2010). Guided by the theoretical structure of CAIMeR, we designed a methodological framework in which we combine structured direct observations and semi-structured interviews.

Demographic Profile of the Population Residing in the Metals and Mining Areas in the European Part of the Arctic Zone of the Russian Federation

Introduction: The relevance of the study is determined by the national goals of strategic development providing for sustainable population growth and an increase in active life expectancy, primarily in demographically disadvantaged areas to which most of the regions of the Russian Arctic Zone belong. Objective: To assess changes in the demographic structure of the Murmansk Region, one of the most industrially developed regions of the Russian Arctic, and the loss of its labor potential in 1989–2019 in order to substantiate the necessity to consider these changes for better planning of health care and adjusting the resource provision of the regional health care system. Materials and methods: We studied demographic characteristics of the population residing in administrative areas of the Murmansk Region with the main town-forming metals and mining enterprises by comparing data for 1989 with those for the years 1999, 2009, and 2015–2019 to establish trends in medical demography situation. The average age of the population was estimated as the arithmetic mean based on distribution of the population by age groups. Results: We established a significant decrease in the size of population of the Murmansk Region in 1989–2019 (by 34.8 %) accompanied by changes in the demographic profile. The increase in the average age of the population was attributed to the sharp decline in the child population, a decrease in the number of people of working age (16–59 years), and a significant increase in the population of older age groups. Changes in the age structure of the population had a significant effect on the old age dependency ratio, which demonstrated a 2.7 and 3.2-fold increase over the three 1989-to-2019 decades in the region and its industrial monotowns, respectively. Conclusion: The negative structural demographic trend resulted in a pronounced regressive regional age and sex pyramid, which by 2019 had a characteristic unstable shape with a relatively narrow base and a slope of its top to the left due to the significant predominance of the female population in the older age group. The observed changes in the demographic profile of the population suggest the need to consider this trend when planning local social policy including the volume and resource provision of health care services.

Local Political Power and Social Protection Policies for Elderly People in the Portuguese Context - An Exploratory Study

Since the Carnation Revolution in April of 1974, and the consequent approval of the Portuguese Republic Constitution (1976), the country’s legislative trend has been geared towards the expansion of local government power, in Portugal. This issue has acquired new relevance recently, with the new reconfiguration of the political decentralization process, through Law No. 50/2018, of 16th August. This is a gradual process, still ongoing, and delayed by the current pandemic situation. Local authorities play a decisive role in the country's development, both in the present and in the past. Initially focused on creating essential and basic infrastructures for the people, now includes other concerns, such as social protection. The definition and implementation of social policies, targeted to different populations, has become an essential axis of action, in a country marked by territorial disparities and an aging population. This study aims to understand the role of local administration in the characterization of social policies targeted at senior populations. The present work is a study of qualitative and explorative nature. Using documentary research and content analysis, we identified and characterized the measures aimed at the senior population implemented by two municipalities (Gouveia and Ourém). The analysis of the results allows us to conclude that the municipalities implemented measures that target the elderly population directly. Seniors also benefit from other measures, applicable to other age groups. It is important that the discussion focuses on these measures and the achievement of their goals. Measures to protect the elderly population are urgent, especially in a southern European country like Portugal, that has an ageing population, with a considerable increase in people aged 65 and over.

A patient-focused survey to assess the effects of the COVID-19 pandemic and social guidelines on people with muscular dystrophy.

Introduction/AimsIn this study, we examined the social and health impacts of the coronavirus disease 2019 (COVID‐19) pandemic and social guidelines on people with muscular dystrophies.MethodsA prospective de‐identified electronic survey was distributed to adults with self‐reported facioscapulohumeral muscular dystrophy (FSHD), myotonic dystrophy (DM), and limb‐girdle muscular dystrophy (LGMD) enrolled in national registries or with patient advocacy groups.The COVID‐19 Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. The Perceived Stress Scale was used to measure perceived stress.ResultsRespondents (n = 774: 56% FSHD; 35% DM, and 9% LGMD) were mostly women and middle‐aged (range 19–87 y). Rates of COVID‐19 infections were low (<1%), compliance with local social distancing guidelines and policies high (98%). Major challenges reported during the pandemic included: obtaining treatment (40%), managing stress (37%), social distancing (36%), and obtaining essentials (34%). The majority reported a slight worsening in their disease state. Respondents reported moderate stress levels (stress score = 15.4; range = 0–35), with higher stress levels reported by women and those under age 30 y. Three‐quarters of participants who participated in telemedicine visits were satisfied with the encounters; however, most reported a preference for in‐person visits.DiscussionPeople with muscular dystrophy reported moderate stress and challenges during the COVID‐19 pandemic. Interventions such as exercise and stress‐coping strategies, including strategies specific to women or individuals <30 y, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with muscular dystrophy.