AUTONOMY LEVELS OF BRAZILIAN YOUTH WITH CEREBRAL PALSY IN VARIOUS LIFE AREAS, AND ASSOCIATED FACTORS

C. Santana¹, G. Rovai¹, P. Rosenbaum², A.C. De Campos¹

¹Federal University of São Carlos-UFSCar, Child Development Analysis Laboratory (LADI), Department of Physical Therapy, São Carlos-SP, Brazil, ²McMaster University, CanChild Center for Childhood Disability Research, Hamilton-ON, Canada

Background: Becoming an adult involves the acquisition of autonomy in several life areas such as education, intimate relationships and housing. However, for people with disabilities such as Cerebral Palsy (CP) the transition to adult life also includes changes in rehabilitation services and care demands. Factors affecting the acquisition of autonomy need to be better understood.

Purpose: To describe the level of autonomy in participation in several life areas and to investigate factors associated with it in young people with CP.

Methods: Youth with CP between 13 and 35 years of age were recruited. The Rotterdam Transition Profile (RTP) was used to assess the autonomy in participation reported in education and employment, finances, housing, leisure, intimate relationships, sexuality, transportation, care demands, services and aids; and rehabilitation services. Classifications of gross motor function and communication function (GMFCS self-report and CFCS) and sociodemographic data (age, sex, and income) were collected.Data were analyzed descriptively and Chi-square tests estimated associations between variables.

Results: 41 young people with CP, mean age 25 years (SD: 6.3), 23 females participated; From all participants, 24 reported to have their own source of income. On the RTP, 65.1% reported attending rehabilitation services focusing adults. Complete autonomy was reportedly achieved in: leisure activities (65.1% of participants); care demands (48.8%); sexual life (46.5%); requesting services and aids (46.5%); education and employment (41.9%); and finances (34.9%). 46.5% reported acquiring autonomy for housing and 34.9% are establishing intimate relationships; 51.2% were totally dependent on others for transportation.Having their own source of income was the main factor associated with autonomy in education and employment (p<0.01), finances (p<0.01), sexual life (p<0.01), transportation (p< 0.01), rehabilitation services (p=0.02), health care (p=0.03), and services and aids (p= 0.03). Limited gross motor function was associated with lower levels of autonomy for housing (p<0.01), sexual life (p= 0.04), and education and employment (p= 0.04). Communication function was only associated with greater autonomy in education and employment (p=0.04). Most females were dependent on others for transportation (p<0.01) but show greater autonomy for requesting services and aids (p=0.03).

Conclusions: Although several participants reported autonomy in various life areas, many still need to improve autonomy. Most are going out with friends at night. Having a source of income seems to be a facilitator for the development of autonomy in key life areas. Limitations with communication and gross motor function impact their sexual life, access and/or permanence in education, which may consequently influence autonomy for employment and housing, and potentially having a source of income. Environmental factors such as violence and sociocultural aspects may be impacting the level of autonomy in transportation for women.

Implications: Action is needed to favor autonomy levels in several life areas related to adult life for young people with CP. Acquisition of income is essential in this period of life and factors favoring it need to be better understood and supported. Although rehabilitation focus should shift to meet needs and preferences of this stage of life, strategies may still be needed to maintain or improve their functional level.

Funding acknowledgements: Research supported by the Brazilian Coordination for the Improvement of Higher Education Personnel (CAPES) and São Paulo Research Foundation(FAPESP) .

Keywords:
Autonomy
Transition to adulthood
Cerebral palsy

Topics:
Paediatrics: cerebral palsy
Health promotion & wellbeing/healthy ageing/physical activity
Disability & rehabilitation

Did this work require ethics approval? Yes

Institution: Federal University of São Carlos - UFSCar

Committee: UFSCar Research Ethics committee

Ethics number: 40161720.1.0000.5504