scholarly journals Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Nicolas Vidart d'Egurbide Bagazgoïtia ◽  
Virginie Ehlinger ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt-Schuchert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Social Relationships ◽  
Young Adulthood ◽  
Associated Factors ◽  
Well Being ◽  
Psychological Well Being ◽  
The Social

Introduction: While most people with cerebral palsy (CP) will have a life expectancy similar to that of the general population, international research has primarily focused on childhood and adolescence; and knowledge about the quality of life (QoL) of young adults with CP, its trajectories, and associated factors remains scarce.Methods: This longitudinal study included young adults with CP living in five European regions and who had previously participated in the SPARCLE cohort as children and/or adolescents. Their QoL in the psychological well-being and social relationships domains was estimated using age-appropriate validated instruments (KIDSCREEN-52 in childhood/adolescence and WHOQOL-Bref in young adulthood). We used generalized linear mixed-effect models with random intercept to estimate long-term trajectories of QoL in both domains and to investigate whether severity of impairment, pain, and seizure influenced these trajectories. We sought to identify potentially different trajectories of QoL from childhood to adulthood using a shape-based clustering method.Results: In total, 164 young adults with CP aged 22–27 years participated in the study. Psychological well-being linearly decreased by 0.78 points (scale 0–100) per year (95% confidence interval (CI) −0.99 to −0.56) from childhood to young adulthood, whereas QoL in the social relationships domain increased (β coefficient 1.24, 95% CI 0.92–1.55). Severity of impairment was associated with reduced QoL in all life periods of the study (childhood, adolescence, and young adulthood): motor impairment with social relationships, and more nuancedly intellectual disability with psychological well-being and social relationships. At all periods, frequent pain significantly reduced psychological well-being, and seizures were associated with lower QoL in the social relationships domain. In both domains, we identified a group of individuals with CP who presented a reverse trajectory compared with the general QoL trajectory.Conclusion: Identification of QoL trajectories and their associated factors yields improved knowledge about the experience of individuals with CP until young adulthood. Further studies are needed to better understand the determinants that have the greatest influence on the different shapes of long-term trajectories of QoL.

PSYCHOLOGICAL WELL-BEING OF THE DYAD OF PARTNERS WITH DISABILITIES

2019 ◽  
Vol 7 ◽  
pp. 133
Author(s):  
Natalya Shipova ◽  
Ulyana Sevastyanova
Keyword(s):  
Quality Of Life ◽  
Close Relationships ◽  
Well Being ◽  
Structured Interview ◽  
Subjective Well Being ◽  
Psychological Well Being ◽  
Level Of Satisfaction ◽  
The Social ◽  
High Level

The relevance of the scientific problem and the scientific novelty are due to the social demand of society for studying problems related to the subjective well-being of people with disabilities. The focus of our attention is the psychological well-being of dyads in close relationships (romantic or marital). The aim of the study is to analyze the psychological well-being in a dyad of partners who are in close relationships. The article analyzes the characteristics inherent in close relations of couples in which one of the partners has a disability. Using the Scale of Adaptation and Cohesion (FACES-3)), the levels of adaptation and cohesion of the dyads were revealed. Methods Quality of life Enjoyment and Satisfaction Questionnaire examines quality of life and subjective well-being, assesses the degree of subjective satisfaction with emotional and social spheres, health, activity in free time. Particularly analyzed data of a semi-structured interview. Empirically revealed differences in the understanding of their own close relationships depending on the health status of the partner. Dyads, including partners with disabilities, demonstrate a high level of satisfaction, average cohesion values, partial balance. The study is complex, and now there is a clear prospect for its continuation.  

scholarly journals Psychological Well-Being of Children in Covid Scenario – Ayurvedic Approach

2020 ◽  
pp. 1-4
Author(s):  
Febin H ◽  
◽  
Jithesh M ◽  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Well Being ◽  
Vulnerable Groups ◽  
Psychological Well Being ◽  
Psychological Issues ◽  
The Social ◽  
Learning Platforms

The entire health scenario have been transformed or even altered with the COVID pandemic. Each and every one in the society is being affected in the scenario of mental health, with the resulting drastic changes happened in the society. One of the key vulnerable groups in the society is none other than children. Even though the educational scenario has been supplemented by the learning platforms, the social scenario have been affected so adversely. They are having several psychological issues as per reported studies from various parts of the globe. Ayurvedic principles of psychiatry and psychology including preventive principles, medicines and psychotherapy will do fine if applied in this area, so as to enhance the quality of life of the affected children. The various possibilities are discussed in the article

scholarly journals Three Strategies for Describing Social Interactions of Adolescents in a Multicultural Environment—Indicators for the Quality of Life Research

2021 ◽  
Vol 18 (15) ◽  
pp. 8166
Author(s):  
Alicja Szerląg ◽  
Arkadiusz Urbanek ◽  
Kamila Gandecka
Keyword(s):  
Quality Of Life ◽  
Social Interactions ◽  
Social Relationships ◽  
Social Relations ◽  
Living Environment ◽  
Life Assessment ◽  
Multicultural Environment ◽  
Multicultural Community ◽  
The Social

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.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

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