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.

Fostering positive attitudes towards interacting with young people with disability among health students: a stepped-wedge trial.

PURPOSE: To investigate if a 12-week community-based exercise program (FitSkills) fostered positive attitudes towards disability among university student mentors. METHODS: A stepped-wedge cluster randomised trial was completed with 4 clusters. Students were eligible to be a mentor if enrolled in an entry-level health degree (any discipline, any year) at one of three universities. Each mentor was matched with a young person with a disability and the pair exercised together at the gym twice a week for an hour (24 sessions total). At 7 times over 18 months, mentors completed the Disability Discomfort Scale to indicate their level of discomfort when interacting with people with disability. Data were analysed according to the intention to treat principles using linear mixed-effects models to estimate changes in scores over time. RESULTS: A total of 207 mentors completed the Disability Discomfort Scale at least once, of whom 123 participated in FitSkills. Analysis found an estimated reduction of 32.8% (95% confidence interval (CI) -36.8 to -28.4) in discomfort scores immediately after exposure to FitSkills across all four clusters. These decreases were sustained throughout the remainder of the trial. CONCLUSIONS: Mentors reported more positive attitudes towards interacting with people with disability after completing FitSkills with changes retained for up to 15 months.

Participating in a 12-week community physical activity program fostered lower levels of discomfort in interacting with young people with disability among university student mentors.Student mentor's positive attitudes to disability were sustained for up to 15 months following the program.Mentors with no previous experience of disability had a larger reduction in discomfort scores than mentors who had previous disability experience.We recommend short-duration (24 hours over 12 weeks) community-based experiences such as FitSkills to positively impact how entry-level health professional students relate to young people with disability.

Fatigue experienced by people with cerebral palsy: a systematic review of assessment tools and decision tree.

PURPOSE: To conduct a systematic review of self- and proxy-report fatigue assessment tools used in studies of people with cerebral palsy (CP) of all ages, and to develop a fatigue assessment tool decision tree for clinicians and researchers. MATERIALS AND METHODS: Five electronic databases (MEDLINE, PsycInfo, CINAHL, Web of Science and Cochrane) were searched to September 2021 to identify studies assessing self-reported fatigue in people with CP of any age. The assessment tools utilised were extracted and two reviewers appraised the tool characteristics, clinical utility and psychometric properties. A decision tree for selecting fatigue assessment tools was constructed. RESULTS: Ten assessment tools were identified across thirty-nine studies, three of which are valid and reliable for assessing fatigue severity and impact in people with CP. A four-level fatigue assessment tool decision tree was constructed. No valid and reliable tool for assessing cognitive fatigue was identified; responsiveness has not been evaluated in any tool for people with CP. CONCLUSIONS: Physical fatigue screening and assessment tools for people with CP are available and are presented in our decision tree, however their utility as outcome measures remains unclear. Cognitive fatigue is understudied and poorly understood, further work is required in this area.

Current measurement tools to screen and assess physical fatigue in people with cerebral palsy (CP) are valid and reliable and are presented in our 4-level decision tree to guide assessment tool selection.The responsiveness of these measurement tools to screen and assess physical fatigue has not been evaluated, therefore their utility as outcome measures in people with CP is unclear.Cognitive fatigue is understudied and poorly understood in people with CP.Valid and reliable tools to assess cognitive fatigue in people with CP are not available.

Community-based physical activity interventions for adolescents and adults with complex cerebral palsy: A scoping review.

AIM: To identify implementation strategies and safety outcomes (adverse events) of community-based physical activity interventions for adolescents and adults with complex cerebral palsy (CP). METHOD: Five electronic databases were systematically searched to April 2022. Data were extracted on the implementation and safety of physical activity interventions for adolescents and adults with CP, classified in Gross Motor Function Classification System (GMFCS) levels IV and V, delivered in a community setting. RESULTS: Seventeen studies with 262 participants (160 participants classified in GMFCS levels IV or V) were included. Community settings included schools (n = 4), participants' homes (n = 3), gymnasia (n = 2), swimming pools (n = 2), and other settings (n = 4). Most studies specified medical or safety exclusion criteria. Implementation strategies included pre-exercise screening, use of adapted equipment, familiarization sessions, supervision, physical assistance, and physiological monitoring. Attendance was high and attrition low. Nine studies reported non-serious, expected, and related events. Four studies reported minor soreness and four studies reported minor fatigue post-exercise. Serious adverse events related to exercise were infrequent (reported for 4 of 160 participants [<2%]: three participants withdrew from an exercise programme and one participant ceased exercise for a short period). Most frequently reported was pain, requiring temporary exercise cessation or programme change, or study withdrawal (three participants). INTERPRETATION: For most adolescents and adults with CP classified in GMFCS levels IV and V, physical activity interventions can be safely performed in a community setting, without post-exercise pain or fatigue, or serious adverse events. WHAT THIS PAPER ADDS: Supervised community-based physical activity interventions can be safely performed by people with complex cerebral palsy. Post-exercise pain or fatigue was not common among those classified in Gross Motor Function Classification System levels IV or V. Serious adverse events are infrequent when exercising in community settings, with safety strategies.

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.

How Effective Are Interventions to Increase Physical Activity Levels among Older Inpatients Receiving Rehabilitation, without Increasing the Amount of Therapy? A Systematic Review.

Purpose: We systematically reviewed the effectiveness of interventions to increase physical activity in older adults (aged ≥ 60 y), admitted for inpatient rehabilitation, without increasing the amount of therapy. Method: Five electronic databases were systematically searched to identify English-language articles reporting controlled trials of interventions to increase the physical activity (through participation or behavioural change) of older adults receiving inpatient rehabilitation. Trials were excluded if an intervention increased the intensity of usual care, either during the week or on the weekend. Two reviewers independently completed trial selection, quality assessment, and data extraction. Data were synthesized descriptively, and effect sizes with 95% CIs were calculated. Results: Of the 316 articles identified, 3 were included. Two were activity-based, and 1 was a behavioural change intervention. Physical activity was significantly improved in the behavioural change intervention trial that occurred during therapy (d = 0.27; 95% CI: 0.02, 0.52) and non-therapy time (d = 0.43; 95% CI: 0.19, 0.68). Participants in all trials were sedentary for the vast majority of the day. Conclusions: Older adults in inpatient rehabilitation have a high level of inactivity. Evidence is lacking that interventions increase physical activity in older adults admitted to inpatient rehabilitation without increasing the amount of time in therapy. Evidence from one trial indicates that behaviour-based strategies are effective for increasing physical activity levels in the inpatient rehabilitation setting.

Objectif : analyse systématique de l'efficacité des interventions pour accroître l'activité physique chez les personnes âgées (de 60 ans et plus) hospitalisées en réadaptation, sans accroître la durée de la thérapie. Méthodologie : les chercheurs ont fait une fouille systématique dans cinq bases de données électroniques pour trouver des articles en anglais sur des études contrôlées d'interventions visant à accroître l'activité physique (par la participation ou le changement de comportement) de personnes âgées hospitalisées en réadaptation. Ils ont exclu les études dont l'intervention accroissait l'intensité des soins habituels pendant la semaine ou la fin de semaine. Deux analystes ont procédé à la sélection indépendante des études, à l'évaluation de la qualité et à l'extraction des données. Les chercheurs ont effectué la synthèse descriptive et calculé l'ampleur de l'effet à l'aide de l'intervalle de confiance à 95 %. Résultats : trois études ont été retenues sur les 316 articles extraits. Deux reposaient sur l'activité et une était une intervention pour changer le comportement. L'activité physique s'améliorait considérablement dans l'étude sur l'intervention visant à changer le comportement pendant la durée de la thérapie (d = 0,27; IC à 95 % : 0,02, 0,52) et sans thérapie (d = 0,43; IC à 95 % : 0,19, 0,68). Dans toutes les études, les participants étaient sédentaires pendant la plus grande partie de la journée. Conclusion : les personnes âgées hospitalisées en réadaptation présentent des taux élevés d'inactivité. Les données probantes sont insuffisantes pour déterminer si les interventions accroissent l'activité physique chez les personnes âgées hospitalisées en réadaptation sans accroître la durée de la thérapie. Selon les données probantes d'une étude, des stratégies axées sur le comportement sont efficaces pour accroître le taux d'activité physique lors d'une hospitalisation en réadaptation.

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.