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C. Santana1, M. Ketelaar2, P. Rosenbaum3, C. Luchesse1, A.C. De Campos1
1Federal University of São Carlos-UFSCar, Child Development Analysis Laboratory (LADI), Department of Physical Therapy, São Carlos, Brazil, 2UMC Utrecht and De Hoogstraat Rehabilitation, Center of Excellence for Rehabilitation Medicine, Utrecht, Netherlands, 3McMaster University, CanChild Center for Childhood Disability Research, Hamilton, Canada
Background: Becoming an adult is challenging for all people, and involves the acquisition of new social roles, abilities and demands. However, for young people with disabilities like Cerebral Palsy (CP) this process can be even more challenging: they need to deal with specific health demands and may face additional barriers related to their disability in order to be included in society. Thus, listening to young people with disabilities is crucial to understand their own experiences and perspectives about what impacts their transition to adulthood.
Purpose: To identify the most relevant themes in different life areas for young people with CP transitioning to adult life in Brazil.
Methods: A semi-structured self-report survey (Themes in Transition [TIT]) was co-developed with 16 young people with CP (here named as Guides) in a participative research study. The TIT-survey includes questions on 23 themes regarding several life areas raised by the Guides, and has two final questions to rank the top three most relevant themes
1) for the person at the moment and
2) the top three themes that needs to be discussed more during transition to adult life.
Brazilian young people with CP, age 13 to 35 years, were invited to complete the TIT. Data were analyzed descriptively.
1) for the person at the moment and
2) the top three themes that needs to be discussed more during transition to adult life.
Brazilian young people with CP, age 13 to 35 years, were invited to complete the TIT. Data were analyzed descriptively.
Results: 41 young people with CP, mean age 25 years (SD: 6.3), 23 females and 18 males, completed the survey independently in a remote format. The sample included all CP types. Gross Motor, Manual Ability and Communication Function classifications ranged from I to V. The themes ranked as the top three most relevant to them at the moment are: accessibility in different places (relevant for 51.2% of respondents), followed by inclusion on the labor market (36.6% of relevance) and occurrence of ableism and knowledge in the society about disabilities (34.1% of relevance). The same themes were ranked as the top three most relevant to be discussed during transition, being the accessibility in different places once again the most relevant theme (63.4% of relevance), now followed by the occurrence of ableism and low societal knowledge about disabilities (48.8% relevant), and inclusion on labor market (36.6% relevant).
Conclusions: During transition to adulthood, a key component for social inclusion is being able to access public and private places such as clubs, parks and institutions. People’s attitudes, beliefs and lack of information can have a negative impact in several areas of the lives of people with disabilities, potentially impacting their sense of efficacy and participation levels. Difficulties to find a paid job according to their qualification is a significant barrier for them to acquire financial stability and develop their autonomy in early adult life.
Implications: Environmental barriers seem to be the most impactful and challenging aspects during transition to adulthood for young people with CP. However, all these barriers are modifiable. Hence, structural and attitudinal improvements need to be undertaken, and specific strategies need to be continuously implemented to create a supportive environment for them to achieve their full capacity of participation, independency and quality of life in adulthood.
Funding acknowledgements: Brazilian Coordination for the Improvement of Higher Education Personnel- Internationalization program (CAPES - PrInt) and São Paulo Research Foundation(FAPESP).
Keywords:
Cerebral palsy
Transition to adulthood
Participative research
Cerebral palsy
Transition to adulthood
Participative research
Topics:
Paediatrics: cerebral palsy
Health promotion & wellbeing/healthy ageing/physical activity
Research methodology, knowledge translation & implementation science
Paediatrics: cerebral palsy
Health promotion & wellbeing/healthy ageing/physical activity
Research methodology, knowledge translation & implementation science
Did this work require ethics approval? Yes
Institution: Federal University of São Carlos - UFSCar
Committee: UFSCar Research Ethics committee
Ethics number: 40161820.0.0000.5504
All authors, affiliations and abstracts have been published as submitted.
