Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study.

PURPOSE: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. MATERIALS AND METHODS: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. RESULTS: Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. CONCLUSION: The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

Spinal surgery for scoliosis in children with cerebral palsy is a major surgery and poses substantial challenges for the family.Understanding the magnitude of the decision for families to proceed with surgery will equip health professionals to adequately support and partner with families.Detailed information and extensive preparation are necessary for families to proceed with and navigate surgery, the hospital stay and to return home and to the community.

How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

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.

Exploring Adaptive Cycling Interventions for Young People with Disability: An Online Survey of Providers in Australia.

Adapted cycles offer young people with disability a fun way to participate in over-ground cycling, but little is known about current practices to train and sustain cycling in this group. This study aimed to describe interventions used to introduce adaptive cycling to young people with disability and explore barriers and facilitators to adapted cycle use. A cross-sectional online survey was distributed among Australian allied health, education and recreation providers through targeted advertizing and snowball methods. Data were analysed using mixed methods and reporting was guided by the CHERRIES and CROSS checklists. There were 107 respondents with n = 90 (84.1%) who fully completed the survey. Respondents worked with riders who had cerebral palsy, neurodevelopmental disabilities and movement impairments. Adaptive cycling interventions were customized according to a rider's goals, needs and resourcing. The training of cycling skills included "an eclectic mix" of experiential learning, individual goals, task-specific training and holistic practice models. Diverse factors impacted cycling participation, with opportunities reliant on access to a supportive environment, including a suitable adapted cycle. This study found that providers viewed adaptive cycling as a therapeutic or active leisure experience within protected traffic-free environments. Strategies to extend adaptive cycling opportunities into the community are required.

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.

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.

Editorial Highlights from the Comorbidities and Complications of Cerebral Palsy Special Issue.

Cerebral palsy is a life-long condition and the most common cause of physical disability in childhood [...].

Assessing engagement in rehabilitation: development, validity, reliability, and responsiveness to change of the Rehabilitation Observation Measure of Engagement (ROME).

Purpose: We describe the development of an observational video coding tool, the Rehabilitation Observation Measure of Engagement (ROME), to quantify engagement in rehabilitative settings at the person (internal state of an individual) and between-system (interaction between individuals) level.Methods: Forty-nine children with unilateral spastic cerebral palsy (29 males; Age: M = 9.28 yrs, SD = 3.08 yrs) and their interventionists were videotaped during different activities. Construct validity was examined by correlating the ROME with the Engagement vs. Disaffection with Learning Survey and the Pediatric Rehabilitation Intervention Measure of Engagement - Observation questionnaire. Inter- and intra-rater reliability were examined using two independent raters. The ROME's responsiveness to change was examined by comparing scores across activities.Results: For construct validity, results showed a positive correlation for person-level engagement (r = 0.444, p = 0.003). No relationship was found between-system-level engagement. High intrarater (91.8%) and interrater (96.1%) reliability was found. The ROME's responsiveness to change was supported by children exhibiting lower engagement scores during repetitive shaping activities.Conclusion: These findings provide evidence that the ROME is a reliable tool to objectively examine the construct of engagement within rehabilitation and is valid for quantifying person-level engagement. It provides information that cannot be extracted from questionnaires and can help guide intervention decisions.

Implications for rehabilitationBehavioral characteristics, including engagement, of the agents involved in rehabilitation are largely unstudied, although engagement is expected to benefit motor learning.The Rehabilitation Observation Measure of Engagement (ROME) is an observation measure that uses predefined codes and can be used universally, as it is not limited to specific language or cognitive levels.The ROME is a reliable tool for objectively measuring the role of the construct of behavioral engagement during rehabilitation and valid for examining person-level engagement.The ROME may be used as a measure of client and service provider process, of intervention quality, or as a decision guide.

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

Mapping the focus of research conducted with adults with cerebral palsy: an overview of systematic reviews.

PURPOSE: To map research conducted with adults with cerebral palsy (CP) to the International Classification of Functioning, Disability and Health (ICF) to understand the array of research available, identify key clinical messages and inform future research. MATERIALS AND METHODS: An overview of systematic reviews was conducted. Comprehensive searches (to December 2021) were conducted in PsycINFO, Web of Science, MEDLINE, CINAHL, Cochrane, JBI, and EMBASE. Eligible studies were systematic reviews that included primary studies of adults with CP. Included reviews were assessed for study quality and mapped to the ICF components and chapters. A narrative synthesis of commonly reported outcomes within the component/s and chapter/s was conducted. RESULTS: All 24 included reviews were published since 2010. Thirteen focused on body functions: movement related functions and cardiovascular and respiratory systems. Although nine reviews focused on gait and mobility, considerable overlap of included studies limited the volume of evidence and variability in review quality limited generalisability of findings. CONCLUSIONS: Research involving adults with CP is growing; however, this overview of reviews found a predominant focus on mobility and gait. Future research, informed by consumer priorities, is needed to address a broader range of key health and participation outcomes.Implications for rehabilitationFitness, mobility, and gait were the most common research topics found in these systematic reviews suggesting a narrow research focus in adults with CP.There are significant gaps in our knowledge to inform clinical messages for practice about broad long-term outcomes of CP and how best to support their activity performance and participation.There is very limited evidence with which to guide and support rehabilitation professionals working in this field.

Do supports and barriers to routine clinical assessment for children with cerebral palsy change over time? A mixed methods study.

PURPOSE: To understand how healthcare professionals' perceptions of supports and barriers to routine clinical assessment, for children aged 3-18 years with cerebral palsy, evolved in the presence of a knowledge translation intervention. METHODS: A prospective longitudinal mixed-methods study was completed. The intervention comprised knowledge brokers, an e-evidence library, locally provided education and embedding routine clinical assessment in practice. Healthcare professionals from five disability services completed the Supports and Barriers Questionnaire and focus groups at baseline, 6, 12 and 24 months. Quantitative data were analysed descriptively and qualitative data using longitudinal framework analysis. RESULTS: Questionnaire ratings indicated participants felt supported in implementing routine assessment over time. Subtle differences emerged from the longitudinal framework analysis. Participants shifted from 'adopting' to 'embedding' and 'maintaining' routine assessment. Integration of assessment was impacted by a new national disability funding model. Participants highlighted the need to maintain skills and for unambiguous, sustained communication between the organisation, clients, and stakeholders. If, how and why families engaged with routine assessment developed over time. CONCLUSIONS: After an initial focus on pragmatic implementation issues, over time healthcare professionals began to reflect more on the complexities of children and families' engagement with assessment and the impact on the therapist-child-family relationship. Trial registration: This trial was not a controlled healthcare intervention and was registered retrospectively: ACTRN12616001616460. The protocol of the trial was published in 2015.IMPLICATIONS FOR REHABILITATIONHealthcare professionals can be supported over time to embed routine clinical assessment using multifaceted knowledge translation interventions.It takes time and ongoing support for healthcare professionals to embed, maintain and begin to adapt the routine clinical assessment to fit with policy, organisational context and the needs and wishes of children and families.Understanding and tailoring knowledge translation approaches to the policy context are essential.Even in the context of major policy shifts, it is possible to harness the commitment of organisations and professionals to improve their services in line with evidence-based approaches.

Implications of providing wrist-hand orthoses for children with cerebral palsy: evidence from a randomised controlled trial.

PURPOSE: To investigate the effects of providing rigid wrist-hand orthoses plus usual multidisciplinary care, on reducing hand impairments in children with cerebral palsy. METHODS: A pragmatic, multicentre, assessor-blinded randomised controlled trial aimed to enrol 194 children aged 5-15 years, with wrist flexor Modified Ashworth Scale score ≥1. Randomisation with concealed allocation was stratified by study site and passive wrist range. The treatment group received a rigid wrist-hand orthosis, to wear ≥6 h per night for 3 years. Analysis included repeated measures mixed-effects linear regression models, using intention-to-treat principles. RESULTS: The trial stopped early due to insufficient recruitment: 74 children, across all Manual Ability Classification System levels, were randomised (n = 38 orthosis group; n = 36 control). Mean age was 10.2 (SD 3.1) years (orthosis group) and 9.1 (SD 2.8) years (control). Data showed some evidence that rigid wrist-hand orthosis impacted passive wrist extension with fingers extended in the first year [mean difference between-groups at 6 months: 13.15° (95%CI: 0.81-25.48°, p = 0.04); 12 months: 20.94° (95%CI: 8.20-33.69°, p = 0.001)]. Beyond 18 months, participant numbers were insufficient for conclusive findings. CONCLUSION: The study provided detailed data about short- and long-term effects of the wrist-hand orthosis and highlighted challenges in conducting large randomised controlled trials with this population. Trial Registration: Australia and New Zealand Clinical Trials Registry: U1111-1164-0572 IMPLICATIONS FOR REHABILITATIONThere may be incremental benefit, for children with cerebral palsy, at 6 and 12 months on passive wrist range from wearing a rigid wrist-hand orthosis designed according to this protocol.The rigid-wrist-hand orthosis evaluated in this study, which allowed for some tailoring for individual children's presentations, differed in design from past recommendations for "resting hand" positioning.Longitudinal follow up of children with cerebral palsy prescribed a rigid wrist-hand orthosis is essential to monitor any benefit.Minor adverse events were commonly experienced when wearing the orthosis and should be discussed prior to prescription of a rigid wrist-hand orthosis.

Does exercise affect quality of life and participation of adolescents and adults with cerebral palsy: a systematic review.

PURPOSE: Investigate the effect of exercise for adults with cerebral palsy (CP) on quality of life, participation (attendance and involvement in life situations), functional mobility, pain, fatigue, mood, and self-efficacy. METHODS: A systematic review was completed. Twelve databases were searched from inception to August 2022 for studies including participants (≥16 years) with cerebral palsy, and that evaluated an exercise intervention. Two reviewers independently assessed eligibility, risk of bias, and extracted data. RESULTS: Seventeen studies (total n = 532) were included: 12 randomised control trials, four non-randomised trials, and one single case experimental design. Interventions studied were predominantly strength, aerobic or treadmill training, dance, and swimming. No study assessed participation, pain or mood. Of two studies that assessed quality of life, one reported a positive effect on an aspect of mental health immediately after the programme finished. All studies assessed functional mobility, but only one reported a positive effect. One study assessed self-efficacy and found no effect, and another assessed fatigue and reported conflicting results. CONCLUSIONS: The effect of exercise for adults with CP, on outcomes that adults report as important to them - quality of life, participation, pain, mood, and fatigue - are unknown.IMPLICATIONS FOR REHABILITATIONTo address outcomes important to adults with cerebral palsy (CP), it is important to understand how exercise affects participation and quality of life.All modes of exercise reviewed appear safe for adults with CP and choice should be based on the client's preferences, access to services, and convenience.Addressing any needed accommodations in the environment and context is likely more important than exercise prescription parameters when tailoring exercise to meet the needs of adults with CP and sustain participation.

Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda.

AIM: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda. METHOD: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V. INTERPRETATION: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. WHAT THIS PAPER ADDS: Children and young people with cerebral palsy (CP) attended all activities less than their peers without CP. Differences in attendance were larger for community-based activities than home activities. When attending activities, children and young people with CP were less involved than their peers. Children and young people with milder impairments attended less frequently than their peers without CP. Children and young people with milder impairments attended more frequently than their peers with severe impairments.

Impact of adapted bicycle riding on outcomes for children and adolescents with disabilities: A systematic review.

AIM: To review the evidence for the effects of adapted bicycle riding on body structures and functions, activity, participation, and quality of life outcomes in children with disabilities, along with family-level participation outcomes. METHOD: A systematic review with searches of nine electronic databases to identify studies involving participants with a developmental disability aged 4 to 18 years who used a dynamic adapted bicycle was completed in August 2021. Risk of bias was assessed based on individual study designs. A narrative synthesis integrated the findings of the included studies. Certainty of evidence was synthesized using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. RESULTS: Ten studies were included with 234 participants. Five studies reported outcomes at the body structures and functions level, ten reported activity-level outcomes, two reported participation-related outcomes, and none assessed quality of life or family participation in social and recreational activities. INTERPRETATION: Adapted bicycle riding interventions may improve gross motor function, enhance lower-limb muscle strength, and promote physical activity; however, certainty of evidence of effects was rated very low using GRADE. Further research is required to understand the impact of adapted bicycle riding on the participation outcomes of children and adolescents with disabilities and on family-level participation in social and recreational activities. WHAT THIS PAPER ADDS: Adapted bicycle riding interventions may improve motor functions and physical activity. Evidence about participation outcomes after adapted bicycle riding is limited. Research on adapted bicycle riding interventions in natural settings is needed.

Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability.

AIMS: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability. METHODS AND PROCEDURES: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description. OUTCOMES AND RESULTS: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE. CONCLUSIONS AND IMPLICATIONS: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda-Setting Study.

BACKGROUND: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. OBJECTIVE: The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda-setting exercise conducted in 2021 in Australia. METHODS: The research agenda-setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders-people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey; a consultation process undertaken through the government and nongovernment sector; and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. RESULTS: We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. CONCLUSIONS: This multi-method research agenda-setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31126.

Is the search for cerebral palsy 'cures' a reasonable and appropriate goal in the 2020s?

In the field of disability research and advocacy, the notion of 'cures' is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether 'cures for CP' is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of 'cures for CP' that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies.