Stacey L. Cleary

This qualitative case series explores safety strategies used by adults with cerebral palsy with high support needs and co‐occurring complexities during community‐based physical activity. Five participants (mean age 30 years, female n = 2; Gross Motor Function Classification System [GMFCS] level IV n = 1; GMFCS level V n = 4) who completed two interviews and were observed participating in their usual physical activity (warm water exercise n = 3; gym exercise n = 1; sing‐and‐dance group n = 1) were included in the study. Data were analysed deductively and coded to eight safety strategies identified a priori (medical prescreening, education, familiarization [practice], adapted equipment, fatigue monitoring, physiological monitoring, physical assistance, supervision), with further inductive analysis within the physical assistance category. All participants were active with paid support people. Seven of eight strategies were in use, and an additional strategy of ‘programme monitoring’ was developed. Physical assistance was the dominant strategy, with inductive analysis identifying four purposes of physical assistance, and the key attributes of support people. No adverse events were reported although gaps were identified in participants' understanding of safety strategies and how strategies were monitored and adapted in the absence of health professional involvement. Discrepancies between evidence and practice highlighted opportunities for clinicians to promote physical activity literacy around safety monitoring in community physical activity settings.

To explore the experiences of Autistic adolescents and young adults who participated in a 12-week student-mentored community based physical activity program called FitSkills. This qualitative study was embedded within a large implementation trial. The data sources were: (i) trial screening forms, including reasons for participation from 30 Autistic young people (24 with intellectual disability), and (ii) semi-structured interviews completed by telephone with 7 Autistic young people (6 male; M_age 18.6 years), 13 parents (11 mothers) and 16 student mentors (10 women). Data were analysed using content analysis (screening) and reflective thematic analysis (interviews). The most common reason Autistic young people and their parents gave for wanting to take part in FitSkills was improving physical fitness. Three themes were identified: (1) Relationships with student mentors 'made it' and evolved over time to becoming gym partners or friends; (2) Social support helped participants to navigate the gym environment, manage sensory needs and establish a routine; and (3) Exercise was perceived to have a positive effect on psychological wellbeing. A student-mentored community-based program can facilitate Autistic young people to exercise, by overcoming barriers to their participation and supporting them to navigate the community gym environment.

Aim: To synthesize the experiences of 15‐ to 34‐year‐olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.Method: A mixed‐methods scoping review was undertaken and six electronic databases searched (January 2001 to August 2023). Participation foci and thematic outcomes were mapped to the International Classification of Functioning, Disability and Health. Results were integrated using a convergent integrated analysis framework, and data analysis completed through thematic synthesis. Themes were mapped to the family of Participation‐Related Constructs.Results: Thirty‐eight publications (32 studies; 2759 participants) were included. More participants were male (n = 1435), walked independently (n = 1319), and lived with their families (n = 1171). ‘Claiming my adulthood and “doing” life’ was the unifying descriptor of participation, conveying the effortful work young people felt necessary to take their places in the adult world. The physical accessibility of the environment was a significant barrier to participation, as were people's negative attitudes or misconceptions about disability. A close‐knit ‘circle of support’, typically family members, formed a supportive foundation during this period.Interpretation: Young people with CP aim to participate fully in adult life, alongside their peers. Improved community accessibility, inclusion, and more supportive health environments would ensure they could live the lives they choose.

The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not ‘to’ or ‘about’) young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE’s Participation Theme team’s experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.

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.What this paper adds: Negative community attitudes about disability affect confidence and self‐perception, and hinder participation, in young adults with cerebral palsy (CP). Close friends can act as a buffer for young adults with CP, fostering their participation and bringing joy. A government‐funded disability support scheme has improved access to services. However, high levels of advocacy are required to obtain appropriate support. Online learning enhanced the participation and engagement of young adults with CP enrolled at university during the COVID‐19 pandemic.

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). 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. 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. 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.

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 t...

To investigate if a 12-week community-based exercise program (FitSkills) fostered positive attitudes towards disability among university student mentors.A stepped-wedge cluster randomised trial was...

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.