Catherine Arnaud1,2, Carine Duffaut3, Jérôme Fauconnier4, Silke Schmidt5, Kate Himmelmann6, Marco Marcelli7, Lindsay Pennington8, Joaquim Alvarelhão9, Chirine Cytera5,10, Marion Rapp10, Virginie Ehlinger3, Ute Thyen10. 1. UMR 1027 Inserm, Toulouse3 University, team Sphere, Hôpital Paule de Viguier, 330 Avenue de Grande Bretagne, TSA 70034, F-31059, Toulouse, France. catherine.arnaud@univ-tlse3.fr. 2. Clinical Epidemiology Unit, University Hospital, F-31059, Toulouse, France. catherine.arnaud@univ-tlse3.fr. 3. UMR 1027 Inserm, Toulouse3 University, team Sphere, Hôpital Paule de Viguier, 330 Avenue de Grande Bretagne, TSA 70034, F-31059, Toulouse, France. 4. Laboratoire TIMC-IMAG Equipe ThEMAS, Grenoble Alpes University, Pavillon Taillefer CHU Grenoble CS10217, F-338043, Grenoble, France. 5. University of Greifswald, Institute of Psychology, Robert-Blum-Str. 13, 17489, Greifswald, Germany. 6. Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden. 7. Azienda Sanitaria Locale Viterbo, Child and Adolescent Neuropsychiatric Unit - Adult Disability Unit, Via Enrico Fermi 15, 01100, Viterbo, Italy. 8. Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK. 9. School of Health Sciences, University of Aveiro, Campo Universitário de Santiago, Aveiro, Portugal. 10. Department of Pediatric and Adolescent Medicine, Universität zu Lübeck, Ratzeburger Allee 160, 23538, Lübeck, Germany.
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.
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.
Entities:
Keywords:
Adulthood; Cerebral palsy; Employment; Health care; Participation; Quality of life
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