Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Jun 30;21(1):254.
doi: 10.1186/s12883-021-02263-z.

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

Catherine Arnaud  1   2 , Carine Duffaut  3 , Jérôme Fauconnier  4 , Silke Schmidt  5 , Kate Himmelmann  6 , Marco Marcelli  7 , Lindsay Pennington  8 , Joaquim Alvarelhão  9 , Chirine Cytera  5   10 , Marion Rapp  10 , Virginie Ehlinger  3 , Ute Thyen  10
Affiliations

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

Catherine Arnaud et al. BMC Neurol. .

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.

Keywords: Adulthood; Cerebral palsy; Employment; Health care; Participation; Quality of life.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Study design
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Thyen U, Perrin M. Chronic illness. In: Carey WB, Crocker AC, Elias ER, Feldman HM, Coleman WL, editors. Developmental and behavioral pediatrics. 4. Philadelphia: W.B.Saunders Co; 2009. pp. 343–354.
    1. Hanes JE, Hlyva O, Rosenbaum P, Freeman M, Nguyen T, Palisano RJ, et al. Beyond stereotypes of cerebral palsy: exploring the lived experiences of young Canadians. Child Care Health Dev. 2019;45(5):613–622. doi: 10.1111/cch.12705. - DOI - PMC - PubMed
    1. Cussen A, Howie L, Imms C. Looking to the future: adolescents with cerebral palsy talk about their aspirations--a narrative study. Disabil Rehabil. 2012;34(24):2103–2110. doi: 10.3109/09638288.2012.672540. - DOI - PubMed
    1. Jacobson DNO, Löwing K, Hjalmarsson E, Tedroff K. Exploring social participation in young adults with cerebral palsy. J Rehabil Med. 2019;51(3):167–174. doi: 10.2340/16501977-2517. - DOI - PubMed
    1. van der Slot WMA, Nieuwenhuijsen C, van den Berg-Emons RJG, Wensink-Boonstra AE, Stam HJ, Roebroeck ME, et al. Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med. 2010;42(6):528–535. doi: 10.2340/16501977-0555. - DOI - PubMed