The study highlights the new trends in public social policies of preventing marginalization risks for vulnerable groups and individuals, concomitantly with shaping social/community responsibility for ...a programme of sustainable social change and development. On the background of some theories about the interdependency and complexity of human needs, these new policy directions attempt to mitigate major issues regarding the social development and normal community integration requirements for the members of the society. The present analysis focuses on the political and ideological principles required for promoting some integrated public social policies required for increasing quality of life. A synthetic review is made as regards the profile of social policies in Romania after 1990. The analysis of 30 years of transition highlights a distinct profile of social policies in the framework of the “selected models of country”. The evaluation of the governmental strategies will pursue the impact of public social policies on some vulnerable categories with high marginalization risk. The analysis attempts to identify actual types of risks in relation with the profile of the beneficiaries and their approach by the governance depending on the political options. A long-term time horizon will be considered along with a short-term one for emphasizing the distinct profiles of the public policies, specific to the post-December governments. During the last years, a new trend of social development emphasizes increasingly more frequently in Europe the need of major objectives for a programme of economic growth in agreement with the social and human requirements. Thus, those stages of “economic development per se” by disregarding “human presence” could be exceeded. Therefore, the new EU direction for sustainable economic development is centered on “socially inclusive economic growth”. As such, the new trends within public policies take account also of a wide sphere of non-economic social factors, corresponding proper to the multidimensional profile of the quality of life and human development.
II. THE RESEARCH ETHICS INVOLVING VULNERABLE GROUPS González-Duarte, Alejandra; Zambrano-González, Elena; Medina-Franco, Heriberto ...
Revista de investigacion clinica,
07/2019, Letnik:
71, Številka:
4
Journal Article
Recenzirano
Odprti dostop
Vulnerability in research occurs when the participant is incapable of protecting his or her interests and therefore, has an increased probability of being intentionally or unintentionally harmed. ...This manuscript aims to discuss the conditions that make a group vulnerable and the tools and requirements that can be used to reduce the ethical breaches when including them in research protocols. The vulnerability can be due either to an inability to understand and give informed consent or to unequal power relationships that hinder basic rights. Excluding subjects from research for the only reason of belonging to a vulnerable group is unethical and will bias the results of the investigation. To consider a subject or group as vulnerable depends on the context, and the investigator should evaluate each case individually.
Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little ...about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.
This open access book explores the conceptual challenges posed by the presence of migrants with irregular immigration status in Europe and the evolving policy responses at European, national and ...municipal level. It addresses the conceptual and policy issues raised, post-entry, by this particular section of the migrant population. Drawing on evidence from different parts of Europe, the book takes the reader through philosophical and ethical dilemmas, legal and sociological analysis to questions of public policy and governance before addressing the concrete ways in which those questions are posed in current policy agendas from the international to the local level. As such this book is a valuable read to researchers, practitioners and policy makers as well as to students working on irregular migration in Europe in a comparative and/or country based perspective.
Purpose
– The purpose of this paper is to understand the difficulties in implementing models of housing, and to help address the lack of accessible and affordable private housing for people with ...disability in Australia. In responding to this aim, the study formulated an ecological map of housing models, which are examined in this paper in terms of their underlying assumptions of vulnerability.
Design/methodology/approach
– The study involved explanation building, using a multiple case study approach, informed theoretically by an ecological framework. It included organisations, families and individuals with disability.
Findings
– For the purpose of this paper, the study revealed a direct relationship between the nature of the housing models proposed, and assumptions of vulnerability. In the context of the study findings, the paper suggests that attempts to address individual housing needs are more likely to achieve a positive outcome when they are person driven, from a premise of ability rather than disability. Overall, it invites a “universalistic” way of conceptualising housing issues for people with disability that has international relevance.
Practical implications
– This paper highlights how assumptions of vulnerability shape environmental responses, such as housing, for people with disability.
Originality/value
– This paper is based on a study that reconciled a person-centred philosophy with an ecological appreciation of the external and internal factors impacting housing choice for people with disability.
Currently, there is no single consensual definition of sarcopenia in the literature. This creates a challenge for the evaluation of its prevalence and its direct or indirect impact on the quality of ...life of elderly populations of different races and ethnicities. Furthermore, no studies as yet have analyzed these variables in populations of elderly subjects of the "quilombola" ethnic group.
We aimed to verify the association between sarcopenia and quality of life in quilombola elderly using the Baumgartner and the European Working Group on Sarcopenia in Older People (EWGSOP) criteria.
This was a cross-sectional study of 70 male and female participants (mean age: 65.58±6.67 years). Quality of life was evaluated using the multidimensional 36-item Short-Form Health Survey (SF-36) of the Medical Outcomes Study. Sarcopenia was diagnosed according to the Baumgartner cutoff for appendicular skeletal muscle mass and the criteria recommended by the EWGSOP. Muscle mass and fat mass percentages were analyzed by dual-energy X-ray absorptiometry, while handgrip strength (HGS) was evaluated using a hand-held dynamometer. Physical performance was assessed through a gait speed test.
The prevalence of sarcopenia was 15% according to the Baumgartner cutoff and 10% according to EWGSOP criteria. Quilombola elderly classified as physically active or very active were at least six times less likely to develop sarcopenia than those classified as irregularly active or sedentary. HGS was negatively associated with a diagnosis of sarcopenia according to both sets of criteria. Subjects with sarcopenia reported lower scores than those without the condition on the physical role functioning and bodily pain domains of the SF-36.
In this sample of quilombola elderly, quality of life was negatively associated with sarcopenia, regardless of the classification criteria used. Additionally, the results showed that diagnostic criteria for sarcopenia should include reductions in lean mass in addition to measures of functioning and physical performance because some subjects showed the former symptom without any alteration of the latter two variables. The cutoff value suggested by Baumgartner criteria were less accurate than that specified by the EWGSOP criteria because they do not consider functioning and physical performance. However, Baumgartner criteria were more sensitive in detecting sarcopenia because reductions in lean mass predict alterations in strength and walking speed.
This study aims to assess the psychometric properties of the Brazilian version of the Vulnerable Elders Survey-13 (VES-13). Interviews were carried out with individuals aged 60 years and over ...receiving care at an ambulatory cancer centre. Test-retest reliability was assessed using the Spearman correlation coefficient, intraclass correlation coefficients and Cohen's kappa coefficient. Construct validity was assessed by testing convergent and discriminant validity using principal component analysis and Varimax rotation. The Spearman correlation coefficient value of the comparison between test and retest scores was 0.98 (p < 0.001). All intraclass correlation coefficient values were higher than 0.60 and kappa coefficients varied between 0.33 and 0.94. Three identified factors explained 72.6% of overall sample variance. VES-13 presented good convergent validity and reasonable discriminant validity. The psychometric properties of the adapted version of the VES-13 are consistent and adequate for use with the Brazilian population.
Research involving human participants has been conducted in the Philippines since the beginning of the Spanish colonial period. Such studies are expected to adhere to internationally accepted ethical ...guidelines. This paper discusses trends in clinical research ethics in the Philippines during the American colonial period (1898‐1946). Specifically, studies were assessed on: 1) their observance of ethical protocols, including review; 2) identification of inclusion and exclusion criteria in the selection of participants; 3) use of vulnerable subjects; and 4) practice of the informed consent process. Only the informed consent process had a significant logistic correlation with progression of years. Recruitment of vulnerable groups was common during this period; children and prisoners were the most common participants. Trends in medical ethics in the Philippines reflected those in the United States prior to the publication of the Nuremberg Code, which served as a milestone in the protection of human welfare in clinical research.
Purpose
– The purpose of this paper is to reflect on engaging young autistic people in the participatory design of the Autism
&
Uni online toolkit. The purpose of the toolkit is to provide autistic ...students with information and strategies for dealing with the challenges they may encounter when entering higher education. The study adds to existing research on participatory design by considering the specific needs and contributions of autistic people who are of average or higher intelligence, academically competent and generally articulate, a group that has received limited attention hitherto.
Design/methodology/approach
– The research used a five-step design thinking approach and engaged multiple stakeholders at different points. The paper covers the whole process, paying particular attention to the final two steps of prototyping and testing. During three participatory design workshops, autistic people acted as co-designers and co-creators.
Findings
– The workshops were effective in engaging participants in various design activities and rich discussions. Several assumptions about capabilities and preferences of autistic people were challenged. Design thinking proved a suitable framework for involving this group in the creation of solutions that serve their needs.
Research limitations/implications
– Because of the low number of workshop participants (11), research results may lack generalisability. Also, the workshop format with its focus on group activities may discourage some autistic people to take part. Further work is needed to explore this and to confirm the reported findings.
Practical implications
– The paper offers practical advice regarding how to involve autistic people in co-design activities.
Social implications
– The research contributes to a strength-based view of autism, rather than one that focuses on deficits.
Originality/value
– The paper provides new perspectives on the strengths of autistic people in participatory design settings, with a focus on those autistic people who are of average or higher intelligence and able to communicate effectively.
Abstract
The fact that Mexican immigrants are healthier than their US-born co-ethnics has been well established. The subsequent observation that this health advantage diminishes over time and with ...increased acculturation is confirmed by only limited research and is severely compromised by several methodological shortcomings. Our analysis directly tests the acculturation hypothesis by investigating childhood health at an early age; specifically, we explore the relationships between birth-weight, primary language spoken, maternal nativity, and stature for age (SFA) among a sample of respondents to the NHANES III Youth survey data. Results indicate that a substantially large portion of the health advantages transferred from mother to child among the Mexican-born are due to birth-weight advantages. After controlling for health advantages conferred at birth among the foreign-born, language differences fully account for nativity differences between Mexican- and US-born mothers, suggesting an additional protective effect of Spanish-language maintenance and lending evidence to the hypothesis that language-based acculturation erodes health among Mexican Americans.
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