Participation experiences of young people with cerebral palsy in key life situations: A qualitative study.

AIMS: To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. METHOD: We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated. Interviews were audio-recorded and transcribed verbatim before thematic analysis. RESULTS: An overarching theme of 'branching out into adulthood' was identified. Participants described early adulthood as a time of change, choice, and challenge. The sub-themes were: (1) making sense of my CP as an adult; (2) people's attitudes towards disability and the impacts on me; (3) roadblocks and workarounds; and (4) participation at the time of the COVID-19 pandemic. Participants reported complex views on the new disability insurance scheme. While access to services and support increased, participants experienced significant difficulty negotiating appropriate funding, resulting in frustration and reduced confidence in the scheme. INTERPRETATION: Young people with CP experience complexity as they participate during young adulthood. Alongside exploring how their identity is intertwined with having CP, they face significant barriers to participation when navigating relationships, accessing services, and being involved in the community.

Health literacy in adolescents and young adults with cerebral palsy: a mixed methods systematic review.

PURPOSE: To identify evidence of health literacy in young people with cerebral palsy (13-38 years), describe current strategies they use to access and build their health knowledge, and explore associations between health literacy and quality of life (QoL). METHODS: Four electronic databases were systematically searched (2001 to June 2023) to identify studies describing components of health literacy in this population. Two reviewers screened for eligibility, then extracted data and assessed methodological quality of included studies. Data were synthesised using a convergent integrated analysis framework and summarised with a narrative synthesis. RESULTS: Eleven studies were included (N = 363). Evidence of health literacy was demonstrated through a range of strategies young people employed to identify their specific information needs, develop health literacy skills, and learn experientially. The preferred method for building health knowledge was obtaining information from trusted sources. Information gaps were identified in topics such as ageing with cerebral palsy, sexuality and navigating intimate relationships. There were minimal data on health literacy and QoL. CONCLUSIONS: Young people with cerebral palsy want tailored and credible health information to increase participation in making informed health-related decisions. Building capacity and development of self-efficacy may assist with the identification of emerging health literacy needs.

Despite health literacy being a key indicator of quality chronic disease self-management for people with disabilities, outcomes are infrequently measured in young people with cerebral palsy.Capacity building, development of identity and self-management skills were identified as important components of health literacy in young people with cerebral palsy.Topic areas of unmet health information include relationship management, sexual health and how to navigate the bodily changes associated with ageing with cerebral palsy.Providing adolescents with cerebral palsy earlier opportunities to build health literacy may facilitate increased autonomy in healthcare decision making during the transition to adulthood.

An exploratory content analysis of how physiotherapists perceive barriers and facilitators to participation in physical activity among adults with disability.

Purpose: To explore the perceived barriers and facilitators to participation in physical activity among adults with disability, from the perspective of physiotherapists. Method: A convenience sample of 20 participants recruited from delegates attending a symposium at the 2015 Australian Physiotherapy Association conference. The participants completed a brief questionnaire. Content analysis was completed using an inductive approach. Results: Participants reported 18 facilitators and 18 barriers to participation in physical activity among adults with disability. The top five reported facilitators were as follows: having support (n = 17 responses), having a choice of opportunities (n = 10 responses), access to suitable venues and equipment (n = 10 responses), enjoying physical activity (n = 8 responses), and high self-efficacy (n = 7 responses). The top five reported barriers were as follows: reduced access to programs and opportunities (n = 15 responses), lack of support or social isolation (n = 14 responses), lack of transport (n = 7 responses), financial strain (n = 7 responses), and physical ability (n = 7 responses). Conclusions: Physiotherapists who have a strong interest in the physical activity habits of adults with disabilities recognize a wide range of facilitators and barriers to their participation. Psychosocial beliefs and behaviors (i.e., self-efficacy, motivation, fear, and attitude) of adults with disability might be more important influencers of physical activity participation than impairments of body structure and function.

Barriers to and facilitators of physical activity for children with cerebral palsy in special education.

AIM: To explore the barriers to and facilitators of physical activity for young people with cerebral palsy in specialist schools. METHOD: Eleven focus groups involving 73 participants (10 young people with cerebral palsy, 13 parents of children with cerebral palsy, 27 teachers, 23 therapists) were held at two specialist schools. Focus groups were audio-recorded and transcribed verbatim. Transcripts were analysed using inductive thematic analysis by two researchers, independently. RESULTS: Four main themes emerged from the focus groups: school priorities; student factors; staffing and environment; and roles and relationships. Physical activity was promoted when academic work and physical activity were seen as equally important school priorities. Student factors that reduced physical activity included fluctuating health, school absences, and protracted rehabilitation after surgery. The staffing and environment unique to specialist schools played a pivotal role in assisting students to be active, as was the importance of collaborative, relationship-based care. INTERPRETATION: Physical activity programmes developed in specialist schools need to take into consideration complexities associated with the age, developmental stage, and academic requirements of young people with cerebral palsy. Particularly for adolescents, motivation was discussed as having a substantial influence on physical activity participation. These findings may assist school leadership teams, clinicians, and teachers in planning physical activity interventions. WHAT THIS PAPER ADDS: Specialist schools offer custom-built environments that promote physical activity and inclusion for students with physical impairments. Therapists and teaching staff work creatively and collaboratively to incorporate an 'all-day' approach to providing physical activity opportunities. Balancing time spent on physical activity versus academic work can cause tension.

A qualitative evaluation of an aerobic exercise program for young people with cerebral palsy in specialist schools.

PURPOSE: To explore the perceived effects of an aerobic exercise program delivered in specialist schools for young people with cerebral palsy with high support needs. METHODS: In-depth interviews were completed with 8 students with cerebral palsy, 10 parents, 8 teachers and 7 physiotherapists. Interviews were audio-recorded, transcribed verbatim and independently coded by two researchers. Data were analyzed using thematic analysis. RESULTS: Two themes emerged: one about program impact and the second about influential design features. Exercise was perceived as important, and participants indicated that the program had resulted in positive physical (e.g., improved ease of mobility, fitness and stamina) and psychosocial (e.g., happiness, social experience, challenge) impacts. The school setting, program staff and student attitudes were key features of the program. CONCLUSIONS: These data converge with those from a randomized controlled trial and attribute physical and psychosocial benefits to a specialist school-based exercise program for young people with cerebral palsy.

An aerobic exercise program for young people with cerebral palsy in specialist schools: A phase I randomized controlled trial.

PURPOSE: To evaluate the safety, adherence, and estimates of effect of an aerobic exercise program in specialist schools for young people with cerebral palsy. METHODS: Nineteen students with cerebral palsy were randomly allocated to an intervention group who completed an aerobic exercise program (27 sessions over nine weeks) or a control group who completed social/art activities over the same time. RESULTS: There were no serious adverse events and the exercise program was completed with high rates of attendance (77%) and adherence to target heart rate zones (79%). Effect sizes favored the intervention group for measures of cardiovascular performance (sub-maximal treadmill test, effect size d = 0.7; muscle power sprint test, d = 0.9) and participation (Preference for Active-Physical Activities, d = 0.6). CONCLUSIONS: An aerobic exercise program in specialist schools for young people with cerebral palsy, that may improve measures of cardiovascular performance, can be completed safely, with moderately high levels of adherence.