Autonomy in Participation and Health Care and Transition Readiness to Adult Health Care for Young People with Cerebral Palsy. Summary of the Doctoral Thesis

Abstract

Cerebral palsy is the most common cause of physical disability in children, most of them reaching and living adult life. For young people with cerebral palsy transition to adult life, concerning participation and healthcare, is a complex process and unsuccessful transition can result in decreased autonomy and problems of health. The aims of this research were: to detect the level of autonomy in participation and healthcare for young people with cerebral palsy with normal or possible cognitive deficit, to detect their level or readiness for transition to adult healthcare, to identify the factors that are associated and are impacting the transition process, to determine the significant differences in health and disability between young people with cerebral palsy and able-bodied peers. The literature review contains scientific grounds of limitations in participation and health risks for adults with cerebral palsy, describes the transition process to adult life, gives an insight in laws of Latvia concerning young adults with cerebral palsy in context of participation and healthcare, and mentions examples of education and work possibilities for persons with disability in Latvia. Methodology was built to give a comprehensive cross-sectional description of the transition process, to highlight the associated and impacting factors, which were interpreted as facilitating or inhibiting, and to compare functioning in life between young adults with cerebral palsy and the control group. The results of the research show that the largest proportion of participants are dependent on parents in such domains of participation as Education and employment, Finance, Housing and Transportation. Domain of participation – Leisure (social activities) – was found to be the only domain in which the largest proportion of the participants were autonomous, while in domains Intimate Relationships and Sexuality most of participants had no experience. In domains of healthcare – Care demands and Rehabilitation services – the largest proportion of the young people were in phase of experimentation and orientation with the future, resp., parents and young people formulate demands together, and no consultations are happening in paediatric or adult rehabilitation. Regarding domain Services and aids majority were still dependent on parents. Compared to control group, young adults with cerebral palsy had significantly higher difficulties in social participation and in the total level of difficulties concerning functioning and disability. In addition, young adults with cerebral palsy significantly more often face difficulties managing tasks and activities of functioning than the young adults of the control group. Most frequent and strongest correlations with domains of autonomy in participation and healthcare were found to be the level of difficulties in self-care and cognitive functions. Self-care more frequently has significant an impact on domains of participation, cognitive functions – on healthcare. Other impacting factors on certain domains of autonomy in participation and healthcare were found to be the level of difficulties in mobility and life activities, age of the participant, gross motor functions, manual abilities, and the need of an assistant. The level of readiness for transition to adult healthcare for young adults with cerebral palsy was detected to be between the phases of preparation and action. The results of the research show that significant impact on the level of readiness for transition to adult healthcare have the gross motor functions, cognitive functions, need of an assistant, the level of autonomy in the Leisure (social activities) and Transportation domains, and the level of difficulties in self-care, however, the strongest were determined to be the level of cognitive functions and abilities of self-care.