Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels.

AIM: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. METHOD: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. RESULTS: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. INTERPRETATION: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.

Social participation in adults with cerebral palsy: a systematic review of the evidence-base.

PURPOSE: To identify and synthesise the current evidence on social participation in adults with cerebral palsy (CP). METHODS: Four databases (PubMed, CINAHL Plus, PsycINFO, Web of Science) were systematically searched between December 2021 and February 2022. Pre-specified eligibility criteria were applied to all identified studies resulting in the inclusion of 16 articles. Data extraction was performed using a standardised tool and quality appraisal was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis approach was taken for data analysis. RESULTS: The 16 included studies were rated as high (n = 11) and medium quality (n = 5). Numbers of participants included in the studies ranged from 7 to 335. Definitions of social participation were discussed. Common themes were identified: the impact of home and work environments on social participation, the importance of age-appropriate support and interventions, and the impact of limited autonomy on social participation. CONCLUSIONS: Adults with CP experience limited social participation due to lack of appropriate support in childhood, issues across the lifespan including physical limitations when ageing, and factors such as societal expectations and inaccessible environments which limit opportunities for autonomy. Social participation may be improved by supporting families to provide opportunities in childhood, providing timely interventions, and by enhancing autonomy.

Considering the support needs of the wider family, in order to build a supportive family environment in childhood, could improve social participation opportunities for individuals with cerebral palsy (CP) in adulthood.Social participation in adulthood may be improved by encouraging independence and autonomy in childhood and adolescence.Taking a lifespan approach to services for individuals with CP could improve social participation and better prepare them for the challenges of adulthood.

Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study.

AIM: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. METHOD: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. RESULTS: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%). INTERPRETATION: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. WHAT THIS PAPER ADDS: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.

Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the United Kingdom and Ireland.

PURPOSE: The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. METHODS: A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. RESULTS: Participants (n = 162) were aged 18-74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. CONCLUSION: Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP.Implications of rehabilitationAdults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed.Adults were not satisfied with the availability or quality of physiotherapy services received.Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed.There is a need to develop physiotherapy services from a life-span perspective for adults living with CP.

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.

Implementing public involvement standards in cerebral palsy register research.

Background: In 2018, the National Institute for Health Research launched Draft Standards for Public Involvement in Research. The Northern Ireland Cerebral Palsy Register (NICPR) was competitively selected as a "test-bed" project to pilot the Draft Standards over a one-year period. Aim: This perspective paper aims to describe the NICPR's experience of piloting the Draft Standards for Public Involvement in Research, highlighting successes and challenges. Method: Three of the six Draft Standards were piloted from April 2018 to April 2019: Standard 2 "working together", Standard 4 "communications" and Standard 5, "impact". Results: Implementation of Standard 2 resulted in formation of a dedicated Public Involvement Group. Standard 4 was implemented by revision of the NICPR's Privacy Notice and development of the NICPR website. Standard 5 was not implemented during the test-bed pilot period. Discussion: Benefits of use of the Draft Standards in cerebral palsy register research included development of relationships, improving quality, accessibility and relevance of NICPR materials, increasing skills and confidence, networking opportunities, advocating for others and feeling empowered to shape cerebral palsy research. Challenges included administrative issues, absence of dedicated and sustained funding, limitations in the availability and applicability of public involvement training and the time required for meaningful public involvement. Conclusions: Standards for Public Involvement provide a useful framework for structuring and embedding meaningful public involvement. Sustained, authentic public involvement in cerebral palsy register research ensures that people affected by the condition are empowered to engage, inform, develop and lead research that meets their needs.

Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher.

Introduction: Cerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the doctoral research process. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic. Methods: This paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the doctoral researcher and adults with CP using the INVOLVE Values and Principles framework. Five adults with CP were consulted throughout the doctoral research programme. The data for this paper is a combination of reflection notes, email exchanges, meeting minutes and informal discussions with the PPI team on their experiences of being involved in the PPI process. The content of this paper is informed by GRIPP 2 checklist. Results: The doctoral researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage of the doctoral research process. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research. Conclusion: Involving adults with CP positively impacted the doctoral research process. It is recommended to consider individual access needs to ensure meetings and information are accessible for disabled adults. Our reflective findings and recommendations may help other researchers who plan to involve adults with CP in doctoral research.

Unmet Health Needs among Young Adults with Cerebral Palsy in Ireland: A Cross-Sectional Study.

Data describing the unmet health needs of young adults with cerebral palsy (CP) may support the development of appropriate health services. This study aimed to describe unmet health needs among young adults with CP in Ireland and examine if these differed between young adults who were and were not yet discharged from children's services. In this cross-sectional study, young adults with CP aged 16-22 years completed a questionnaire assessing unmet health needs. Logistic regression was used to examine the association between discharge status and unmet health needs. Seventy-five young adults (mean age 18.4 yr; 41% female; 60% in GMFCS levels I-III) were included in the study. Forty (53%) had been discharged from children's services. Unmet health need, as a proportion of those with needs, was highest for speech (0.64), followed by epilepsy (0.50) and equipment, mobility, control of movement and bone or joint problems (0.39 or 0.38). After adjusting for ambulatory status, unmet health needs did not differ according to discharge status. The proportion of young adults with unmet health needs highlights the importance of taking a life-course approach to CP and providing appropriate services to people with CP regardless of age.

Use of health services and unmet needs among adults with cerebral palsy in Ireland.

AIM: To describe use of health services, unmet needs relating to health services, and identify factors associated with service use among adults with cerebral palsy (CP) in Ireland. METHOD: Data relating to demographics, secondary diagnoses, current use of health services and assistive devices, and unmet needs for both were obtained on adults with CP from the National Physical and Sensory Disability Database. Logistic regression was used to identify factors associated with service use. RESULTS: A total of 1268 adults with CP were included in this study. Over half were male (56%) and 78% lived with parents, siblings, or other family relatives. Physiotherapy, occupational therapy, and orthotics/prosthetic services were the most commonly used services, used by 57%, 48%, and 35% of the sample respectively. Unmet needs were highest for physiotherapy (23%) and occupational therapy services (13%). Age, sex, living arrangements, and wheelchair use were frequently associated with current service use. INTERPRETATION: Adults with CP used a wide range of health services and unmet needs were reported for all services. The findings highlight a need for planning and development of services to meet their needs, regardless of their age, mobility level, or living arrangements. WHAT THIS PAPER ADDS: Adults with cerebral palsy (CP) in Ireland used a wide range of therapeutic, respite, personal assistance, and support services. Unmet needs were highest for physiotherapy and occupational therapy services. Adults aged 25 years and above were less likely to use therapy services compared with younger adults. Adults living with parents, siblings, or family relatives were less likely to use personal assistance and physiotherapy services.

Acceptability and feasibility of a vestibular nerve stimulation headset protocol in children with cerebral palsy.

BACKGROUND: Research suggests electrical Vestibular Nerve Stimulation (VeNS) may improve balance for people with neurological impairments. This study aimed to assess the feasibility and acceptability of a VeNS headset protocol in children with cerebral palsy (CP). METHODS: Children aged 5-18 years with ambulant CP, their parents, and healthcare professionals were recruited via social media. Children completed a battery of balance tests and wore a sham VeNS headset one hour per day for four weeks. Perspectives on the balance tests and headset were ascertained from children, parents and healthcare professionals using semi-structured interviews. Interview data were analysed thematically. RESULTS: Two families and four healthcare professionals participated. Balance outcome measures were fully completed and deemed acceptable. Adherence with wearing the headset was 89-100% but discomfort with self-adhesive electrodes was reported. Four themes emerged from interview data: headset issues, perceptions about VeNS, the importance of balance, and modifications for future study. CONCLUSIONS: Although the VeNS headset had high acceptability, the volunteer sample was small, potentially suggesting limited interest in VeNS as a treatment for children with CP, or reluctance to trial a 'non-active' headset. Recruitment via clinicians known to the family and use of an 'active' headset may increase participation in future research.

Mapping health services for adults with cerebral palsy in Ireland: a pilot study.

Background: Cerebral palsy (CP) is a common cause of physical disability in childhood. The majority of children with CP survive to adulthood. Once discharged from children's services, adults with CP find it challenging to navigate health services. The aim of this study was to pilot and refine a methodology to map services for adults with CP in Ireland. Methods: We used a multi-informant mapping methodology consisting of: 1. Defining health services; 2. Identifying informants; 3. Designing a survey; 4. Collecting data; 5. Data checking and analysis. We collected data on services from service users and service providers using an online survey. We verified data against information available online and by asking organisations to provide details about the service. Results: Fifteen service users and nine service providers completed the online survey. Data on 265 unique services at 32 organisations were provided. The most commonly provided services were physiotherapy (12%) and occupational therapy (11%). We confirmed the name of 89 services (34%) against online information. We received further details from eight organisations about 27 services. Specifically, we received details about the organisation name for 27 of the 265 services (10%), service name for 25 services (9%), service type for 25 services (9%), a website for 19 services (7%), and data on eligibility criteria and types of supports provided for between 25 or 26 services (9% or 10%). Conclusion: This pilot study highlighted the complexity of mapping services for adults with CP in Ireland. We recommend that an alternative methodology should be used to map services for adults with CP in Ireland.

Health service use among adults with cerebral palsy: a mixed-methods systematic review.

AIM: To determine the proportion of adults with cerebral palsy (CP) using health services and frequency of use, and to explore experiences and perceptions of health services for this population. METHOD: A mixed-methods systematic review was conducted using the Joanna Briggs Institute methodology. Five databases were searched to September 2020. Observational and qualitative studies were included. Two reviewers screened titles, abstracts, and full texts; extracted data; and assessed the quality of included studies. Separate meta-analyses were used to pool the proportion of adults using each service and frequency of use. A meta-aggregation approach was used to synthesize qualitative data. Quantitative and qualitative findings were integrated using the Andersen and Newman Model of health care utilization. RESULTS: Fifty-seven studies (31 quantitative, 26 qualitative) of 14 300 adults with CP were included. The proportion of adults using services ranged from 7% (95% confidence interval [CI]: 2-13%) for urologists to 84% (95% CI: 78-90%) for general practitioners. Incidence of visits ranged from 67 (95% CI: 37-123) hospital admissions to 404 (95% CI: 175-934) general practitioner visits per 100 person-years. Qualitative themes highlighted issues regarding accessibility, caregivers' involvement, health workers' expertise, unmet ageing needs, transition, and health system challenges. INTERPRETATION: Adults with CP used a wide range of health services but faced context-specific challenges in accessing required care. Appropriate service delivery models for adults with CP are required. This review emphasizes a need to develop an appropriate service model for adults with CP to meet their needs.

Teaching and Learning in COVID-19 Lockdown in Scotland: Teachers' Engaged Pedagogy.

This paper reports on a study of teachers' perceptions of teaching and learning in Scotland during the COVID-19 pandemic through the lens of engaged pedagogy and the ideas of bell hooks. It aimed to explore the different ways that teachers experienced teaching and learning during this time and the impact this may have had on teacher identity. Sixty teachers and head teachers were interviewed using MS Teams in the period April-June, 2020. For this paper, 18 transcripts were analyzed by members of the research team. Four key themes emerged from the interview data: Working from home, parental engagement, teacher identity, and changes in pedagogy. Each of these themes were discussed in terms of concepts such as engaged pedagogy, agency, self-actualization, recognition and boundary transgression situated in the work of bell hooks. The idea of boundaries wove itself throughout our data as teachers expressed how the transgression of boundaries was occurring in multiple, and often contradictory, ways in pedagogical, professional, institutional and personal spaces and systems. We see in our data evidence of a shift in practice not just in the way teachers are 'doing' education but also, perhaps, in the way that teachers are 'being' as educators as they adapt to different ways of knowing. This study provides a unique exploration of a time and space in Scotland during 2020. However, the themes and understandings that emerged are of relevance to educators internationally. Schools across the world were impacted by various lockdowns imposed by the Covid-19 pandemic and teachers faced a common set of challenges that were resolved via re-negotiation and recognition of individual and collective agency to create new pedagogies.

A Systematic Multidisciplinary Process for User Engagement and Sensor Evaluation: Development of a Digital Toolkit for Assessment of Movement in Children With Cerebral Palsy.

Objectives: To describe and critique a systematic multidisciplinary approach to user engagement, and selection and evaluation of sensor technologies for development of a sensor-based Digital Toolkit for assessment of movement in children with cerebral palsy (CP). Methods: A sequential process was employed comprising three steps: Step 1: define user requirements, by identifying domains of interest; Step 2: map domains of interest to potential sensor technologies; and Step 3: evaluate and select appropriate sensors to be incorporated into the Digital Toolkit. The process employed a combination of principles from frameworks based in either healthcare or technology design. Results: A broad range of domains were ranked as important by clinicians, patients and families, and industry users. These directly informed the device selection and evaluation process that resulted in three sensor-based technologies being agreed for inclusion in the Digital Toolkit, for use in a future research study. Conclusion: This report demonstrates a systematic approach to user engagement and device selection and evaluation during the development of a sensor-based solution to a healthcare problem. It also provides a narrative on the benefits of employing a multidisciplinary approach throughout the process. This work uses previous frameworks for evaluating sensor technologies and expands on the methods used for user engagement.

Risk factors for intellectual disability in children with spastic cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is a non-progressive disorder of posture and movement caused by prenatal or perinatal lesions of the brain. Children with CP are also at increased risk of other disabilities, for example, intellectual disability. Previous studies suggest the risk of intellectual disability varies in complex ways according to the type of motor impairment and perinatal factors such as gestational age. OBJECTIVE: To determine the patterns of risk of intellectual disability in children with spastic CP. DESIGN: Cross-sectional, population-based study using the Northern Ireland Cerebral Palsy Register. PARTICIPANTS: Persons born in 1981-2008 with congenital bilateral or unilateral spastic CP (N=1452). OUTCOME MEASURE: The outcome measure was severe intellectual disability (IQ <50), as reported by clinicians known to the child. Data pertaining to CP subtype, sex, gestational age, birth weight and functional level were included in analyses. RESULTS: Severe intellectual disability was significantly more prevalent in children with bilateral spastic CP (BSCP) compared with children with unilateral spastic CP (χ² (2)=162.60, p<0.001). Compared with very preterm infants with BSCP, the risk of intellectual disability increased in moderately preterm (OR=3.97, 95% CI 1.04 to 15.23) and at-term (OR=2.51, 95% CI 1.16 to 5.44) children with BSCP. CONCLUSIONS: Children with BSCP are at increased risk of intellectual disability, with those born at term at the highest risk. The findings highlight the importance of early screening, particularly for children with BSCP born at term.

Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review.

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy.

PURPOSE: To understand parents' experiences of evidence-based assessment by health professionals for their child with cerebral palsy. METHODS: A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3-18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking. RESULTS: Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I-V, participated. Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents' experience was protection of their child's identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents' involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents' direction and family context. The researchers' interpretive description generated a schema and metaphor-the Steering Wheel for Collaborative Assessment. CONCLUSIONS: A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care.Implications for rehabilitationParents of children who have cerebral palsy describe having to protect their child's identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes.Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential.The interpretive description developed-the Steering Wheel for Collaborative Assessment-may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.

Efficacy of a knowledge translation approach in changing allied health practitioner use of evidence-based practices with children with cerebral palsy: a before and after longitudinal study.

PURPOSE: To investigate the effect of a knowledge translation intervention on knowledge and frequency of routine evidence-based assessment behaviours of healthcare professionals working with children with cerebral palsy. METHODS: A before-and-after longitudinal study was conducted in five disability organisations. Four organisations (Commencing Knowledge Translation group) implemented a multifaceted intervention: knowledge brokers, targeted education, electronic-evidence library, and clinical outcomes database. These strategies were already in place at the fifth organisation (Comparison group). Outcomes evaluated at 0, 6, 12, and 24 months were health-professional knowledge and routine assessment behaviours (self-report and "completeness" of clinical assessment). Generalised estimating equations determined longitudinal changes. RESULTS: Four hundred and forty-seven professionals involved 861 children in the study. The Comparison group had higher knowledge and routine assessment behaviours at baseline. Professional knowledge in both groups remained stable (differences in change from baseline to 24 months: 0.3 units, 95%CI: -0.76 to 1.36). Assessment completeness of the Comparison group was stable (baseline mean 68 units, 95%CI: 65-71); the Commencing Knowledge Translation group improved from baseline mean 35 units (95%CI: 33-36), peaking at 12 months (mean 68 (95%CI: 65-71). CONCLUSIONS: Multifaceted organisational support improved health-professional routine evidence-based assessment behaviours with children with cerebral palsy, despite no change in knowledge. TRIAL REGISTRATION: This trial was not a controlled health care intervention and was registered retrospectively: ACTRN12616001616460. The protocol of the trial was published in 2015 as follows: Imms et al. [6].Implications for rehabilitationA multifaceted knowledge translation intervention increased allied health professionals' assessment behaviours.Knowledge translation strategies can be chosen to target change in knowledge and/or change in behaviour.Knowledge translation interventions should be designed to address organisational barriers and enhance organisational supports.Interventions that target healthcare professionals' behaviour directly can be effective even if their knowledge does not change.