Partnering Early to Provide for Infants At Risk of Cerebral Palsy (PEPI ARC): protocol for a feasibility study of a regional hub for early detection of cerebral palsy in Aotearoa New Zealand.

Introduction: Cerebral palsy (CP) can now be diagnosed in infants with identified CP risk factors as early as three months of age; however, many barriers prevent equitable access to early detection pathways. The "Partnering Early to Provide for Infants At Risk of Cerebral Palsy" feasibility study (PEPI ARC) seeks to trial a new approach to decrease inequitable health service in Aotearoa New Zealand for high-risk infants and their families. PEPI ARC incorporates face-to-face clinics, an in-person and virtual Hub, and the use of telehealth to enable flexible access to CP assessments and support for health professionals in early CP detection. Methods and analysis: A non-randomised feasibility study was conducted from a tertiary Neonatal Intensive Care Unit (NICU) in Wellington and included seven regional referral centres, servicing nearly 30% of the total population in New Zealand (NZ). The families of infants with a high risk of neurodevelopmental impairment and health professionals interacting with the Hub were invited to participate. Mixed methods were used to evaluate the (i) equitable implementation of an early detection pathway, (ii) acceptability, (iii) demand among families and health professionals, (iv) efficacy in relation to reducing the age of receipt of CP diagnosis, and (v) the experiences around communication and information sharing. Ethics and dissemination: The NZ Health and Disability Ethics Committee approved this study (HDEC: 2022 FULL 13434). The findings will be disseminated in peer-reviewed journals, in conference presentations, and via professional networks. Clinical trial registration: Australian New Zealand Clinical Trials Registry: ACTRN12623000600640.

The Journey to Sustainable Participation in Physical Activity for Adolescents Living with Cerebral Palsy.

PURPOSE: To understand adolescents' and their parents' perspectives on 'being active', this study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. METHODS: Eight ambulant adolescents with CP (aged 11-16 years, seven male) participated in a high-level mobility programme twice per week for 12 weeks. Guided using interpretive description, adolescents and 12 of their parents were interviewed before, after and nine months following the programme. Thirty-eight interviews were coded, analysed, and interpreted, informed by audit information, reflective journaling, and team discussions. RESULTS: Adolescents and their parents highly value being active now and into adulthood. Sustainable participation in PA requires adolescents and families to navigate complex environments (interpersonal, organisational, community, and policy). Core themes were: 'Just Doing it', 'Getting the Mix Right' (right people, right place, right time), 'Balancing the Continua' and 'Navigating the Systems'. The continua involved balancing intra-personal attributes: 'I will try anything' through to 'I will do it if I want to' and 'It's OK to be different' through to 'It sucks being disabled'. CONCLUSIONS: The journey to sustainable participation was complex and dynamic. Experiences of successful journeys are needed to help adolescents with CP "stay on track" to sustainable participation.

More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy.

Purpose: To explore the experiences of involvement of adolescents living with cerebral palsy, and their parents, while participating in physical activity. Understanding involvement in physical activity may be used to guide future participation.Methods: Eight adolescents (mean age 13 years 11 months, SD 1 year 6 months) with cerebral palsy participated in a New Zealand-based high-level mobility programme (HLMP) focused on running skills, twice per week for 12 weeks. The adolescents and 12 parents were interviewed before, after the 12 weeks and 9-months following the HLMP. Guided by interpretative description, 38 interviews were coded, analysed, and interpreted.Results: Four themes were: "Turning up is not enough" ("There's no point being there if you're not involved"); "In it all the way", "Changes on a dime", and "What works for me." Perceptions of involvement varied between adolescents and parents. Being "very involved" related to high levels of focus, concentration, effort; but not always enjoyment.Conclusions: Focusing on enjoyment as the key experience of involvement understates the complexity and dynamic nature of involvement. "Being involved" is not always easy and may not mean the absence of discomfort or effort. Optimising the individuals' involvement continuum during physical activity may be essential to promote lifelong participation.IMPLICATIONS FOR REHABILITATIONAdolescents living with cerebral palsy and their parents have differing perspective of involvement and utilise different strategies to encourage being and staying active.Teaching adolescents living with cerebral palsy about their involvement continuum and optimal level of involvement for each activity, context and environment could promote sustained participation.To ensure adolescents are "being involved" in physical activity, opportunities for engagement, motivation and persistence are important; enjoyment is a possible, but not essential attribute of involvement.Encouraging involvement in physical activity can be a source of family conflict from a young age therefore clinicians have a role as an essential supporter, motivator and educator.

Effects of a 12 week community-based high-level mobility programme on sustained participation in physical activity by adolescents with cerebral palsy: a single subject research design study.

PURPOSE: To assess if a high-level mobility programme (HLMP) can promote sustained participation in physical activity by adolescents with cerebral palsy. METHODS: Eight adolescents with cerebral palsy, Gross Motor Function Classification System levels I-II, 11-16 years, participated in 24 community-based group HLMP sessions across 12 weeks. Participants set attendance, involvement, and physical performance goals, completed activity diaries over 58 weeks and undertook physical capacity tests. Measures of activity frequency and diversity (attendance) and involvement level were collected weekly across baseline (4-6 weeks), intervention (12 weeks), and nine months follow-up (including Covid lockdown). RESULTS: Median attendance was 23 of 24 HLMP sessions. Attendance goal/s attainment was highest during COVID lockdown. Involvement goals were consistently attained throughout all phases. Physical performance goal/s attainment was highest during intervention phase but reduced during nine months follow-up. Frequency of participation in physical activities varied greatly across study phases (range 0-33 episodes/week) with stable variety of activities and generally high 'involvement.' During the intervention, seven participants improved physical capacity and six maintained, or increased, the gains six months later. CONCLUSION: Most participants improved physical capacity post-intervention but only some had sustained attendance and involvement in physical activity, highlighting the complexity of physical activity participation.

Health professionals' promotion of sustained participation in physical activity needs to consider individual preferences for frequency, diversity and duration.Supporting and measuring involvement in physical activity should be prioritised as a key outcome of an intervention.Physical activity interventions should be followed up for longer than six months to determine sustained changes in participation outcomesMeasuring physical capacity and performance gains alone is insufficient to determine sustained, meaningful participation.

Do physical activity interventions influence subsequent attendance and involvement in physical activities for children with cerebral palsy: a systematic review.

PURPOSE: To investigate if children with cerebral palsy have sustained attendance and involvement in physical activities after completing physical activity interventions. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven databases were searched for the period 2001-2020 with hand-searching of pertinent reference lists. Criteria for study inclusion were participants aged 0-18 years and ≥50% with cerebral palsy; follow-up ≥1 month beyond completion of the physical activity intervention; and measurement of attendance and/or involvement in any physical activity post-intervention. Study selection, data extraction, and risk of bias assessments (Physiotherapy Evidence Database (PEDro) or tool for non-randomised studies) were completed independently by paired reviewers. Results were compiled by narrative synthesis. RESULTS: Thirteen studies were included (11 randomised controlled trials (RCTs), two non-randomised case series; intervention sample sizes: 6-34). All study participants had cerebral palsy and were aged 4-16.7 years. PEDro scores for the RCTs ranged from 5 to 10; 10 did not blind one or more therapist, participant, or assessor. Two case series showed high risk of bias. Twelve studies reported on attendance, with positive changes in three studies. At 4-14 weeks post-intervention, two studies demonstrated positive changes were maintained. Four studies included involvement outcomes; one reporting positive changes in physical activity involvement four weeks after intervention completion. CONCLUSIONS: Physical activity attendance may be influenced by physical activity interventions in the short term, but more robust research designs are required to investigate whether gains can be sustained. Activity involvement, which may influence ongoing participation, is under-researched.Implications for RehabilitationPositive changes in attendance and involvement following physical activity interventions appear short term at best.Physical activity interventions should have longer follow-up periods to determine the effect on sustained physical activity participation.Careful selection and reporting of attendance and involvement outcome measures is required.The optimal physical activity intervention to increase attendance or involvement in physical activities remains uncertain.

Range of motion in children with spastic diplegia, GMFCS I-II compared to age and gender matched controls.

Measurements of passive range of motion are often used to define the degree of muscle shortening in children with spastic diplegic cerebral palsy. However, little is known about the expected values of passive range of motion measurements in children with spastic diplegia and how these might differ from age and gender matched norms taken from the same population. Therefore, the purpose of this study was to compare eight lower limb measurements of sagittal plane passive range of motion in 22 children with spastic diplegia, GMFCS I to II, with 22 matched controls. Children with spastic diplegia had minimal hip extension loss, but reduced hamstring length, with popliteal angle averaging -59.2+/-10.6 degrees (control -38.8+/-13.4 degrees, p < 0.001) and SLR averaging 52.7+/-10.2 degrees (control 75.8+/-11.1 degrees, p < 0.001). Ankle dorsiflexion with knee extension averaged -2.5+/-8.4 degrees in children with spastic diplegia (control 8.6+/-6.8 degrees, p < 0.001). These data confirmed that children with mild spastic diplegia had some restriction in passive range of motion compared to controls but that there was considerable variability between individuals.

Intrarater reliability of lower limb sagittal range-of-motion measures in children with spastic diplegia.

In this study, 10 sagittal lower limb range-of-motion measures were conducted in a blinded fashion in 25 children with spastic diplegic cerebral palsy and in 25 age- and sex-matched controls. The participants comprised 22 males, mean age 10 years 8 months and 28 females, with mean age 9 years 8 months; age range 6 to 17 years. One paediatric physical therapist performed duplicate goniometric measures at zero time and 7 days later using the same sequence of measures, location, and time of day. Mean absolute differences for measures within one session ranged from 0.7 to 2.9 degrees in controls and from 1 to 4.2 degrees in children with spastic diplegia. Most intraclass correlation coefficients (ICCs) for intra-sessional measures were more than 0.90 in both groups. Measures between sessions were less reliable. Mean absolute differences between sessions were up to 7.1 degrees for children with spastic diplegia and 8.6 degrees for controls, with most ICCs being less than 0.80. Inter-sessional variation in measures was similar in both groups, suggesting that measurement variability is not influenced by the presence of spasticity. Averaging of two measures did not improve inter-sessional reliability compared with the use of a single measure. Dynamic measures (R1) were as reliable as passive measures (R2), but there were inter-sessional differences in calculations using R1 and R2 measures of up to 30 degrees.