scholarly journals Sociocultural context and autistics’ quality of life: A comparison between Québec and France

Autism ◽  
2021 ◽  
pp. 136236132110352
Author(s):  
Vicky Caron ◽  
Nuria Jeanneret ◽  
Mathieu Giroux ◽  
Lucila Guerrero ◽  
Mélanie Ouimet ◽  
...  

Quality of life is important for the development and evaluation of interventions for autistic people. It is a multidimensional concept, anchored in a sociocultural context and based on a person’s subjective assessment of their life. The aim of this study is to examine whether the determinants of perceived quality of life vary by country (or culture) by comparing two groups of French-speaking autistic adults ( n = 430), one in France and the other in Québec (Canada). A cross-sectional survey was conducted to provide information on the quality of life (Autism Quality of Life Measure—ASQoL), diagnosis and health conditions, self-evaluation of autistic traits (Autism-Spectrum Quotient—AQ10), and sociodemographic characteristics of these two samples. The results of our comparison of French-speaking autistic adults in France and Québec suggest that sociocultural context has an impact on autistic people’s quality of life ( r2 = 0.280). The Québec group reported a superior quality of life. The social experience of autism-related stigmatization emerges as a strong predictor of lower quality of life in both groups. However, the two groups differ with other predictors. This study demonstrates the importance of considering sociocultural context in measuring quality of life in autistic adults. It emphasizes the need for awareness programs and public campaigns aimed at identifying and countering stigmatization processes. Lay abstract What is already known about the topic? Quality of life refers to how people perceive aspects of their life such as physical health, material security, and interpersonal relationships. Studies have reported lower quality of life among autistic individuals than in the general population. What does this article contribute? This article contributes to a better understanding of quality of life and its measures from the point of view of autistic adults. By comparing two groups of French-speaking autistic adults from two different places (France and Québec—Canada), this research shows that the perception of quality of life and its determining factors differ for autistic adults living in each country. The Québec group reported a superior quality of life, and some quality of life predictors were different in each group. The social experience of autism-related stigmatization, however, was a powerful predictor of quality of life for all. Implications for practice, research, and policy To promote a higher quality of life for autistic people, it is important to consider the sociocultural context and implement awareness programs and public campaigns aimed at identifying and countering stigmatization processes.

Autism ◽  
2021 ◽  
pp. 136236132110536
Author(s):  
Jacqui Rodgers

The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure for research with autistic adults. The Autism Quality of Life was developed for use alongside the WHOQoL-BREF and WHO Disabilities module. The letter raises some concerns about the use of the Autism Quality of Life as a stand-alone measure in a recent study by Caron et al. published in Autism.


2009 ◽  
Vol 30 (1) ◽  
Author(s):  
Scott Michael Robertson

<p class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Arial;"><span style="font-size: small;">This article examines challenges to the quality of life experienced by autistic adults.</span><span style="font-size: small;"> The author, who is an autistic researcher, first shares how a neurodiversity perspective offers an important alternative to the deficit model of autism. Whereas the deficit model portrays autistic people as ill, broken, and in need of fixing, the neurodiversity perspective portrays it as a form of human diversity with associated strengths and difficulties. The article’s discussion then shifts to presenting Schalock’s (2000) quality of life framework as a neurodiversity-compatible lens through which domains of quality of life can be viewed. The article analyzes in detail these core domains in relation to the lives of autistic adults. The author suggests that a collaborative approach between professionals/researchers and autistic adults is needed to develop meaningful solutions to these challenges, and he presents possibilities for collaboration.<span style="mso-spacerun: yes;">  </span></span></span></p><p class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Arial;"><span style="font-size: small;">Keywords</span></span></p><span style="font-size: 12pt; font-family: Arial;">Autism, Neurodiversity, Quality of life, Autistic Adults</span><span style="font-size: small; font-family: Times New Roman;"> </span>


Autism ◽  
2021 ◽  
pp. 136236132110206
Author(s):  
Serene Habayeb ◽  
Sanaa Al-Harahsheh ◽  
Allison Ratto ◽  
Alyssa Verbalis ◽  
Cara Pugliese ◽  
...  

Autism services in Qatar are expanding rapidly, but focus predominantly on young children. The shortage of qualified autism providers and minimal opportunities for autistic youth to participate in school, work, and community have led to a growing population of autistic youth transitioning to adulthood with substantial unmet needs for behavioral support and instruction in critical life skills. Our objective was to identify the needs and preferences for respite care for autistic adolescents and young adults in Qatar utilizing family and stakeholder input. Researchers from the United States collaborated with researchers and community leaders from Qatar to evaluate perspectives regarding respite care with families of autistic people ( n = 11) and providers/community stakeholders ( n = 20) through surveys and focus groups. Four main themes emerged including (1) a need for trust and reliability of individuals and of systems to support autistic adults, (2) prioritizing quality of life for autistic individuals and their families, (3) seeking meaningful inclusion, and (4) challenges stemming from service delivery systems. Families in Qatar endorsed clear interest in respite care services for young adults with autism, regardless of their child’s age. This study highlights the value of including both provider expertise and family concerns in developing new services for an under-served community. Lay abstract Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.


2017 ◽  
Vol 14 (2) ◽  
pp. 1
Author(s):  
Sina Saeedy ◽  
Mojtaba Amiri ◽  
Mohammad Mahdi Zolfagharzadeh ◽  
Mohammad Rahim Eyvazi

Quality of life and satisfaction with life as tightly interconnected concepts have become of much importance in the urbanism era. No doubt, it is one of the most important goals of every human society to enhance a citizen’s quality of life and to increase their satisfaction with life. However, there are many signs which demonstrate the low level of life satisfaction of Iranian citizens especially among the youth. Thus, considering the temporal concept of life satisfaction, this research aims to make a futures study in this field. Therefore, using a mixed model and employing research methods from futures studies, life satisfaction among the students of the University of Tehran were measured and their views on this subject investigated. Both quantitative and qualitative data were analysed together in order to test the hypotheses and to address the research questions on the youth discontentment with quality of life. Findings showed that the level of life satisfaction among students is relatively low and their image of the future is not positive and not optimistic. These views were elicited and discussed in the social, economic, political, environmental and technological perspectives. Keywords:  futures studies, quality of life, satisfaction with life, youth


2020 ◽  
pp. 36-48
Author(s):  
I. M. Loskutova ◽  
N. G. Romanova

This article is devoted to the application of an integrated approach in the study of the quality of life of the population of the North Ossetia. Aspects of the specifity of objective and subjective approaches are substantiated. The increasing importance of the concept of “quality of life” in the XXI century is indicated. A review of sociological studies of the level and quality of life in Russia, as well as a range of monographic works on the analyzed issues. The results of empirical sociological studies in 2014 and 2018 (a study of the quality and standard of living of the population of North Ossetia and a study of the social wellbeing of the population of North Ossetia using the methodology developed by Lapin N. I. and Belyaeva L. A.) are presented.


2021 ◽  
Vol 11 (7) ◽  
pp. 924
Author(s):  
Claudia B. Pratesi ◽  
Alessandra Baeza Garcia ◽  
Riccardo Pratesi ◽  
Lenora Gandolfi ◽  
Mariana Hecht ◽  
...  

Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.


Author(s):  
Alicja Szerląg ◽  
Arkadiusz Urbanek ◽  
Kamila Gandecka

Background: The analysis has involved social interactions in a multicultural environment. The social context has been defined by the Vilnius region (Lithuania), where national, religious, and cultural differences exist across generations (multicultural community). The space of “social relationships”, as one of the modules of the WHO quality of life assessment, has been studied. An innovation of the research has been related to the analysis of the phenomenon of community of nationalities and cultures as a predictor of quality of life (QoL). The social motive of the research has been the historical continuity (for centuries) of the construction of the Vilnius cultural borderland. Here, the local community evolves from a group of many cultures to an intercultural community. Interpreting the data, therefore, requires a long perspective (a few generations) to understand the quality of relationships. We see social interactions and strategies for building them as a potential for social QoL in multicultural environments. Methods: The research has been conducted on a sample of 374 respondents, including Poles (172), Lithuanians (133), and Russians (69). A diagnostic poll has been used. The respondents were adolescents (15–16 years). The research answers the question: What variables form the interaction strategies of adolescents in a multicultural environment? The findings relate to interpreting the social interactions of adolescents within the boundaries of their living environment. The description of the social relations of adolescents provides an opportunity to implement the findings for further research on QoL. Results: An innovative outcome of the research is the analysis of 3 interaction strategies (attachment to national identification, intercultural dialogue, and multicultural community building) as a background for interpreting QoL in a multicultural environment. Their understanding is a useful knowledge for QoL researchers. The data analysis has taken into account cultural and generational (historical) sensitivities. Therefore, the team studying the data has consisted of researchers and residents of the Vilnius region. We used the interaction strategies of adolescents to describe the category of “social relationships” in nationally and culturally diverse settings.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. Bagavandas

Abstract Background The main objective of this study is to develop a multilevel multi-factor index to assess the quality of life of the Malayali tribal population of India at the household and village levels based on nine domains, namely, Demography, Economy, Health, Human Development, Infrastructure Development, Work Participation, Recreation, Social Capital and Self Perception. An attempt is made to classify the individuals as well as villages by the overall scores of a multi-factor -index within a community which will help policymakers to develop concrete policy recommendations for the improvement of the quality of life of this tribal group. Method Multilevel factor analysis is utilized to determine uncorrelated meaningful factors and their respective weights using Mplus software from the nested dataset consists of values of nine domains of 1096 individuals collected from 19 villages. A multilevel multi-factor index is constructed using the weights of these factors. The qualities of the lives of different households and different villages are assessed using the scores of this index. Results Three different factors are identified at household as well as village levels. The quality of life at Households and Village levels are classified as poor, low, moderate, good, and excellent based on five quintiles of the scores of the multi-factor index, and the contribution of each domain in this classification is ascertained. Discussion This study finds that at household as well as at village levels, the quality of life of the individuals of this tribal population increases with an increase in education, income, and occupation status which make them lead a healthy life and also make them to find time and money to spend on recreation. Infrastructure is not important at the household level but not so at the village level. Conclusion The main purpose of developing this kind of multi-factor index at different levels is to provide a tool for tribal development based on realistic data that can be used to monitor the key factors that encompass the social, health, environmental, and economic dimensions of quality of lives at the household and community levels of these tribal people.


2011 ◽  
Vol 26 (1) ◽  
pp. 28-33 ◽  
Author(s):  
I. Sibitz ◽  
M. Amering ◽  
A. Unger ◽  
M.E. Seyringer ◽  
A. Bachmann ◽  
...  

Abstract:Objective:The quality of life (QOL) of patients with schizophrenia has been found to be positively correlated with the social network and empowerment, and negatively correlated with stigma and depression. However, little is known about the way these variables impact on the QOL. The study aims to test the hypothesis that the social network, stigma and empowerment directly and indirectly by contributing to depression influence the QOL in patients with schizophrenia and schizoaffective disorders.Method:Data were collected on demographic and clinical variables, internalized stigma, perceived devaluation and discrimination, empowerment, control convictions, depression and QOL. Structural equation modelling (SEM) was applied to examine the impact of the above-mentioned constructs on QOL.Results:The influences of the social network, stigma, empowerment and depression on QOL were supported by the SEM. A poor social network contributed to a lack of empowerment and stigma, which resulted in depression and, in turn, in poor QOL. Interestingly, however, the social network and stigma did not show a direct effect on QOL.Conclusions:Following a recovery approach in mental health services by focusing on the improvement of the social network, stigma reduction and especially on the development of personal strength has the potential to reduce depression in patients with psychosis and improving their QOL.


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