Exploring early life social and executive function development in infants and risk for autism: a prospective cohort study protocol of NICU graduates and infants at risk for cerebral palsy.

BACKGROUND: Delays in early social and executive function are predictive of later developmental delays and eventual neurodevelopmental diagnoses. There is limited research examining such markers in the first year of life. High-risk infant groups commonly present with a range of neurodevelopmental challenges, including social and executive function delays, and show higher rates of autism diagnoses later in life. For example, it has been estimated that up to 30% of infants diagnosed with cerebral palsy (CP) will go on to be diagnosed with autism later in life. METHODS: This article presents a protocol of a prospective longitudinal study. The primary aim of this study is to identify early life markers of delay in social and executive function in high-risk infants at the earliest point in time, and to explore how these markers may relate to the increased risk for social and executive delay, and risk of autism, later in life. High-risk infants will include Neonatal Intensive Care Unit (NICU) graduates, who are most commonly admitted for premature birth and/or cardiovascular problems. In addition, we will include infants with, or at risk for, CP. This prospective study will recruit 100 high-risk infants at the age of 3-12 months old and will track social and executive function across the first 2 years of their life, when infants are 3-7, 8-12, 18 and 24 months old. A multi-modal approach will be adopted by tracking the early development of social and executive function using behavioural, neurobiological, and caregiver-reported everyday functioning markers. Data will be analysed to assess the relationship between the early markers, measured from as early as 3-7 months of age, and the social and executive function as well as the autism outcomes measured at 24 months. DISCUSSION: This study has the potential to promote the earliest detection and intervention opportunities for social and executive function difficulties as well as risk for autism in NICU graduates and/or infants with, or at risk for, CP. The findings of this study will also expand our understanding of the early emergence of autism across a wider range of at-risk groups.

Cognitive Functioning and Assessment in Adults with Cerebral Palsy: A Scoping Review.

In this scoping review, we summarize the current knowledge of cognitive functioning in adults with cerebral palsy (CP), and identify the neuropsychological tests typically used in this population. 39 studies from the period January 1990 - August 2023 were included in the review, and they differ widely in their aims and approach to studying cognition. Very few studies have cognitive assessment as their core aim and use a neuropsychological test battery. The included studies show great variability in reported intelligence and cognitive functioning in adults with CP, and cognitive deficits have been reported in all cognitive domains. Most of the studies suffer from methodological limitations, and there is ample room for improvement within the field. We conclude by suggesting a number of recommendations that may contribute to increasing our understanding of cognitive impairments in adults with CP.

[Psychological dysfunctions and management of cerebral palsy patients]. / Dysfonctionnements et prise en charge psychologiques des patients cérébrolésés.

Cerebrospinal patients are victims of acquired brain lesions of multiple etiologies: head trauma, stroke, brain tumors, arteriovenous malformations, progressive degenerative diseases. Their care requires a combination of neurological, neuropsychological, psychiatric and psychopathological knowledge. Psychological follow-up of patients with cerebral palsy is one of the dimensions of their care.

[Therapies, bonds and quality of life of children and adolescents with cerebral palsy: experiences and perceptions of their caregivers during the pandemic]. / Terapias, vínculos y calidad de vida de niños, niñas y adolescentes con parálisis cerebral: vivencias y percepciones de sus cuidadores durante la pandemia.

The COVID-19 pandemic affected the health of children and adolescents (CA). Isolation-related conditions could have impacted not only the functionality of children and adolescents with cerebral palsy (CP) but also their social and emotional well-being, affecting their health-related quality of life (HRQoL). OBJECTIVE: To analyze perceptions of impairment during the pandemic and differences in HRQoL dimensions compared with a previous registry in Argentinean children and adolescents diagnosed with CP from the perspective of their caregivers. SUBJECTS AND METHOD: Cross-sectional observational study at two time points (2019 and 2021) where 98 caregivers participated. We used the KIDSCREEN-27 and CP-QOL questionnaires for the assessment of HRQoL and an open-ended question regarding the impact of the pandemic on the health of children and adolescents, including in 2021. We compared mean scores of the dimensions of the questionnaires in both stages (significant differences: Cohen's d≥0.3). Responses to the open-ended question were analyzed via "open" and "axial" coding. RESULTS: The scores of the dimensions Participation, Emotional well-being, Social well-being, and School environment (CP-QOL) and Psychological well-being, Friends, School environment, and General HRQoL index (KIDSCREEN-27) were lower during the pandemic (2021) compared with 2019 (d>0.3). Regarding perceived affectation during the pandemic, we identified three main recurrences: "impairment due to interruption of therapies and treatments", "deterioration of peer bonding", and "increased and positive appraisal of self-care". CONCLUSIONS: The pandemic affected the psychosocial dimensions of health. Qualitative data highlight the positive assessment of self-care.

Health-related quality of life and associated factors among primary caregivers of children with cerebral palsy, in Bahir Dar and Gondar cities, Ethiopia, 2022.

BACKGROUND: Caring for a child with cerebral palsy (CP) could negatively affect the Health-Related Quality of Life (HRQOL) of the mothers who are usually the primary caregivers. To the best of our 'knowledge, there is a dearth of information on the HRQOL of primary caregivers of children with CP in Ethiopia. Therefore, this study aimed to investigate caregivers' HRQOL and factors associated with it in Gondar and Bahir Dar Cities, Northwest Ethiopia, 2022. METHODS: A community-based cross-sectional study was conducted among primary caregivers of Children with CP from April 20 to June 20, 2022, in Gondar and Bahir Dar cities. Convenience sampling was used to get study participants. Data were collected by trained health extension and community-based rehabilitation workers. The collected data were coded, cleaned, entered into EPI data, and exported to Stata-16 for analysis. A generalized linear model was employed to show the relationship between dependent and independent variables. A P-value≤0.05 was considered statistically significant at a 95% confidence interval. RESULT: In this study, HRQOL among primary caregivers of children with CP was 28.72(±13.38) and 23.26(±12.37) in the physical summary score (PSC) and mental summary score (MSC) respectively. Age 17-30yeas (p-value = 0.03), unable to read and write (p = 0.01), privately employed (p = 0.01) and government employed (p = 0.02), monthly income<1000 Ethiopian Birr (ETB) (p = 0.01), insufficient sleeping (p = 0.001), others relationship(p = 0.001), have three and above children (p = 0.001), others house composition (p = 0.003), have no helpers (p = 0.001) and third birth order of child (p = 0.03) were all factors associated with HRQOL in PSC. On the other hand, income<1000ETB (p = 0.05), insufficient sleeping (p = 0.001), others in relation to the child (p = 0.001), others in house composition (p = 0.03), dyskinetic CP (p = 0.01) and ataxic CP (p = 0.001) were all factors associated with HRQOL of caregivers in MSC components. CONCLUSION: The HRQOL among primary caregivers of children with CP in Bahir Dar and Gondar cities was low. Age, monthly income, educational status, sleeping status, relationship and house composition, number of living children, birth order of child, helpers, and type of CP were all significantly associated with HRQOL of primary caregivers of children with CP.

The use of creative case studies to explore non-verbal and non-ambulant children and young people's well-being.

BACKGROUND AND PURPOSE: The aim of this paper is to describe and critically analyse creative research methods, exploring how these can offer ways to enable non-verbal and non-ambulant children and young people with cerebral palsy, to express their views about their well-being. The context of this research explored their choices for recreational activities, seeking to understand how their level of participation impacted upon their well-being. METHODS: A qualitative comparative case study design was chosen comprising of two interviews, using photographs and diaries to elicit discussion, supported by observations. These observations provided evidence of well-being indicators that were interpreted by the researcher, alongside their parents. Seven participants volunteered, aged nine to sixteen years. Data were analysed utilising Braun and Clark's six stages. Firstly, each case's data sources were coded, themes identified, then across cases comparisons, arriving at three final themes. Triangulation of data sources which made up each case, enhanced the trustworthiness in this study. RESULTS: Observations were key to providing insight into their well-being. Interpretation of this rich data, supported by their parents, revealed that the participants could self-advocate, as shown by their intentional behaviours, to choose their level of participation. DISCUSSION: The researcher's ability to be creative in the data collection methods is original in physiotherapy. It was important to work in partnership with parents, to ensure the correct interpretation of their intentional behaviours from the observations. The diaries and photographs added a unique contribution to knowledge, which enabled the non-verbal participants inclusion, empowering them to express their well-being. STUDY REGISTRATION: This study is registered with the International Study + Clinical Trials Network Register (ISRCTN) Number:42717948. CONTRIBUTION OF PAPER.

"I have to obey my pain" - children's experiences of pain burden in cerebral palsy.

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life. METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis. RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me"). CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.IMPLICATIONS FOR REHABILITATIONChildren with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.Health services should offer pain education to expand children's repertoire of pain management strategies.When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.

Causation in cerebral palsy: Parental beliefs and associated emotions.

AIM: To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs. METHOD: We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these. RESULTS: Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events. INTERPRETATION: Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP. WHAT THIS PAPER ADDS: Understanding the causes of their child's cerebral palsy (CP) was important to parents. Parents most often endorsed intrapartum factors as a cause of CP. Parents reported experiencing strong emotions about the causes of their child's CP.

The Bobath Clinical Reasoning Framework: A systems science approach to the complexity of neurodevelopmental conditions, including cerebral palsy.

The current recommended developmental Bobath practice within the Bobath Clinical Reasoning Framework (BCRF) can be conceptualized using the lens of systems science, thereby providing a holistic perspective on the interrelatedness and interconnectedness of the variables associated with childhood-onset disability. The BCRF is defined as an in-depth clinical reasoning framework that can be applied to help understand the relationships between the domains of the International Classification of Functioning, Disability and Health, how those domains can be influenced, and how they impact each other. The BCRF is a transdisciplinary observational system and practical reasoning approach that results in an intervention plan. This provides a holistic understanding of the complexity of situations associated with disorders such as cerebral palsy (CP) and the basis for the lifelong management and habilitation of people living with neurological disorders. The clinical reasoning used by the BCRF draws on the important contextual factors of the individual and their social environment, primarily the family unit. It is rooted in an understanding of the interrelationships between typical and atypical development, pathophysiology (sensorimotor, cognitive, behavioural), and neuroscience, and the impact of these body structure and function constructs on activity and participation. The systems science model integral to the BCRF is a useful way forward in understanding and responding to the complexity of CP, the overarching goal being to optimize the lived experience of any individual in any context.

Working Memory Training in Norwegian Children with Cerebral Palsy (CP) Show Minimal Evidence of Near and No Far Transfer Effects.

In children with cerebral palsy (CP), learning disabilities are well documented, and impairments in executive functions, such as attention, inhibition, shifting and working memory, represent significant burdens on patients, their families and the society. The aim of this study was to evaluate whether Cogmed RM working memory training could improve working memory in children with CP and investigate whether increased working memory capacity would generalize to other cognitive functions. Twenty-eight children completed the training and the results were compared to a waitlist control group (n = 32). The results yielded three main findings. First, children with CP improved with practice on trained working memory tasks. Second, the intervention group showed minimal near transfer effects to non-trained working memory tasks. Third, no effects on cognitive and behavioral far transfer measures were found.

Family caregivers' experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana.

INTRODUCTION: Caring for a child with cerebral palsy may be more emotionally and physically exhausting than caring for a typical growing child. The family caregivers' perspective of this phenomenon needs exploring to facilitate the development of services. Our study explored the challenges family caregivers face with children with cerebral palsy in a resource-limited context in northern Ghana. METHODS: We conducted a qualitative study underpinned by phenomenological principles where it is believed that the reality of a phenomenon is tied to caregivers' perspectives of their own experiences. In this study, we unearthed caregivers' experiences/challenges from their own perspectives. The method of data analysis used was to allow the issues to emerge from the data (inductive process) using the content analysis approach. We recruited 13 caregivers of children with cerebral palsy from the physiotherapy unit at Tamale Teaching Hospital, and conducted individual in-depth interviews supported by an open-ended topic guide. Interviews were audio recorded, transcribed, and translated and coded inductively before conducting a content analysis of the data when grouped into themes. RESULTS: We have identified barriers to managing a child with cerebral palsy, including sociocultural barriers (values, attitudes and belief systems within society), economic challenges and immediate physical care burdens. Specific barriers included discrimination and isolation, lack of family and societal support, with poor access to health information and formal education. Others were lack of information on the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare expenditure and struggles in lifting and moving children, which resonate with evidence-based multidimensional model of caregiving process and caregiver burden. CONCLUSION: Caregivers have the arduous task of caring for a child with cerebral palsy. Social support interventions and policy initiatives that seek to ameliorate caregivers' finances and make formal education accessible to this marginalised child population may be beneficial in this context.

The experiences and coping mechanisms of mothers caring for a child with cerebral palsy.

Mothers caring for a child with cerebral palsy suffer from many physical and psychosocial problems. Their quality of life is significantly lower than mothers with healthy children. The first step in improving these women's quality of life is to improve the understanding of their experiences and coping mechanisms in specific cultural contexts. Therefore, this study aimed to explore the experiences and coping mechanisms of mothers caring for a child with cerebral palsy through a qualitative study conducted in Turkey. The study took place in 2021. Ten mothers were selected to participate through purposeful sampling. Inclusion criteria were mothers who had cared for a child with cerebral palsy for over three years, had no chronic diseases, could speak Turkish fluently, and wanted to participate in the study. The data were collected through semi-structured interviews. Qualitative content analysis was used to analyze the data. Two main themes and three categories emerged from the data analysis. The themes were "dedication" and "seeking." The analysis showed that mothers were dedicated as they engaged in all aspects of care. Their coping mechanisms involved self-focused and problem-focused seeking. These mothers must be acknowledged and supported while considering cultural and religious beliefs.

Mental health, physical activity, and sports among children with cerebral palsy.

BACKGROUND: People with cerebral palsy (CP) may be at an increased risk for mental health disorders due to co-occurring physical and communication limitations associated with the condition. Participation in physical activity (PA) and sports may provide opportunities to increase socialization and improve physical function. The purpose of this study was to examine associations between participation in daily PA and sports and mental health among children with CP. METHOD: Participants included children with CP (n = 458) and typically developing children (TDC) (n = 40 091) 6-17 years whose parents participated in the 2016-2020 National Survey of Children's Health. Mental health disorders included anxiety, depression, behavioural disorders and attention-deficit/hyperactivity disorder (ADHD). RESULTS: Compared with TDC, children with CP had a higher prevalence of mental health disorders (75.5% vs. 54.2%) and were more likely to receive mental health care (21.5% vs. 14.6%). Controlling for sociodemographic variables, children with CP were more likely to experience anxiety [odds ratio (OR) 2.6; 95% confidence interval (CI) = 2.1-3.3), depression (OR 1.8; 95% CI 1.3-2.4), behavioural disorders (OR 4.8; 95% CI 3.8-6.0) and ADHD (OR 2.1; 95% CI 1.6-2.6). The likelihood of these conditions decreased when children participated in sports for anxiety (OR 2.2; 95% CI 1.8-2.8), depression (OR = 1.4; 95% CI 1.0-2.0), behavioural disorders (OR 4.1; 95% CI 3.2-5.1) and ADHD (OR 1.9; 95% CI 1.5-2.5). The likelihood for anxiety (OR 2.3; 95% CI 1.8-2.8), depression (OR 1.4; 95% CI 1.0-1.9), behavioural disorders (OR 4.4; 95% CI 3.5-5.5) and ADHD (OR 1.9; 95% CI 1.5-2.4) also decreased with participation in daily PA. CONCLUSIONS: There is an overwhelming disparity in the number of children with CP who have a mental health disorder and those who receive mental health care. Increasing access to participation in sports and PA may be beneficial.

[Hungarian adaptation of the Caregiver Priorities and Child Health Index of Life with Disabilities questionnaire]. / Cerebralis paresisben szenvedo gyermekek egészségindexe.

INTRODUCTION: Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire is a measurement tool for assessing health status and wellbeing of disabled children, which evaluates children's quality of life from the caregiver point of view. OBJECTIVE: The aim of our work was the Hungarian translation and cultural adaptation of the questionnaire and also validation of the CPCHILD on Hungarian cerebral palsy patients. Further aim was to test the eligibility of the questionnaire for superficial assessment of caregiver's psychological attitudes. METHOD: Translation of the questionnaire was carried out according to the Beaton's guidelines. Test-retest, interrater reliability (ICC) and also internal consistency (Cronbach-alpha) were calculated for reliability. The importance of the questions was assessed for face validity and known group validity test was done to measure construct validity. For examining parental attitudes, the patients were divided into ambulatory and non-ambulatory groups and the 36 quality of life questions of the 7th domain were used to find relations. RESULTS: During test-retest reliability measurements, the ICC was 0.96 (95% CI: 0.88-0.98), and Cronbach-alpha exceeded the minimal expected value of 0.7 (0.74-0.97) except in the 5th domain (0.67), while measuring interrater reliability the ICC was 0.87 (95% CI 0.70-0.94). Face validity was above the 2.0 threshold in every question (2.6-4.5; mean: 3.4 ± 1.34) and the known group validity calculations showed significant differences between the CPCHILD scores of ambulatory and non-ambulatory groups. Examining parental attitudes, a significant difference was also shown among the parents of ambulatory and non-ambulatory children in assessing the importance of sitting in the quality of life of their children (2.89 ± 1.28 vs. 3.51 ± 0.82; p<0.01). CONCLUSION: The final outcome of our study is that CPCHILD questionnaire has become widely accessible in Hungarian language. Our result, that the answers referring to the sitting abilities and the activities should be carried out in sitting position, was significantly different among the caregivers of the ambulatory and non-ambulatory children, showing that the parents of the GMFCS IV and V category children evaluate the importance of sitting ability higher compared to those parents who care for GMFCS I, II and III category children. Furthermore, the results draw attention to the wellbeing and health of the children measurable with CPCHILD as well as that parental caregiver attitudes can be recognized which may give further help in finding the balance between expectations and possibilities during the rehabilitation of cerebral palsy children. Orv Hetil. 2023; 164(16): 610-617.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

INTRODUCTION: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia. This study aims to codesign a social prescribing programme to address SDH concerns of children with cerebral palsy and their families who attend one of the three tertiary paediatric rehabilitation services in New South Wales, Australia. METHODS AND ANALYSIS: This is a qualitative multi-site study conducted at the three NSW paediatric hospitals' rehabilitation departments using a codesign approach. Children aged 12-18 years with cerebral palsy, parents/caregivers of children (aged 0-18 years) with cerebral palsy, and clinicians will be involved in all stages to codesign the social prescribing programme. The study will consist of three components: (1) 'what we need', (2) 'creating the pathways' and (3) 'finalising and sign off'. This project is overseen by two advisory groups: one group of young adults with cerebral palsy and one group of parents of young people with cerebral palsy. The study will be guided by the biopsychosocial ecological framework, and analysis will follow Braun and Clark's thematic approach. ETHICS AND DISSEMINATION: The study protocol was approved by the human research ethics committee of the Sydney Children's Hospitals Network. This codesign study will inform a future pilot study of feasibility and acceptability, then if indicated, a pilot clinical trial of efficacy. We will collaborate with all project stakeholders to disseminate findings and undertake further research to build sustainable and scalable models of care. TRIAL REGISTRATION NUMBER: ACTRN12622001459718.

Cognition and learning difficulties in a representative sample of school-aged children with cerebral palsy.

BACKGROUND: Nearly half of all children with CP experience intellectual impairment, with impacts on academic achievement. AIMS: To assess cognitive and academic functioning for primary-school aged children with CP METHODS AND PROCEDURES: This population-based cohort study assessed 93 participants (male n = 62; mean = 9 years 9 months, SD 1 y 1.8 months) on measures of fluid and crystallised intelligence (Raven's Coloured Progressive Matrices, Peabody Picture Vocabulary Test) and academic achievement (Wechsler Individual Achievement Test). Analyses included t-tests, Pearson's chi-square and regression. OUTCOMES AND RESULTS: 41 (44.1%) children met criteria consistent with intellectual developmental disorder. Academic skills were significantly below population means on word reading (M= 85.4, SD = 19.3), t(66) = -6.2, p < .001; spelling (M=83.3, SD=19.7) t(65) = -6.87, p < .001; and numerical operations (M=72.9, SD=21.7) Z = 66.0, p < .001. Cognitive ability was associated with GMFCS level (χ² (1, N = 93) = 16.15, p < .001) and diagnosis of epilepsy (χ² (2, N = 93) = 11.51 p = .003). Crystallised and fluid intelligence together accounted for 65% of the variance in word reading, 56% in spelling and 52% in numerical operations. IMPLICATIONS: Many children with CP experience academic challenges. Screening is recommended for all children with CP and full psychoeducational assessment undertaken when children with CP experience academic difficulties.

Harnessing neuroplasticity to improve motor performance in infants with cerebral palsy: a study protocol for the GAME randomised controlled trial.

INTRODUCTION: Cerebral palsy (CP) is the most common physical disability of childhood worldwide. Historically the diagnosis was made between 12 and 24 months, meaning data about effective early interventions to improve motor outcomes are scant. In high-income countries, two in three children will walk. This evaluator-blinded randomised controlled trial will investigate the efficacy of an early and sustained Goals-Activity-Motor Enrichment approach to improve motor and cognitive skills in infants with suspected or confirmed CP. METHODS AND ANALYSIS: Participants will be recruited from neonatal intensive care units and the community in Australia across four states. To be eligible for inclusion infants will be aged 3-6.5 months corrected for prematurity and have a diagnosis of CP or 'high risk of CP' according to the International Clinical Practice Guideline criteria. Eligible participants whose caregivers consent will be randomly allocated to receive usual care or weekly sessions at home from a GAME-trained study physiotherapist or occupational therapist, paired with a daily home programme, until age 2. The study requires 150 participants per group to detect a 0.5 SD difference in motor skills at 2 years of age, measured by the Peabody Developmental Motor Scales-2. Secondary outcomes include gross motor function, cognition, functional independence, social-emotional development and quality of life. A within-trial economic evaluation is also planned. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Sydney Children's Hospital Network Human Ethics Committee in April 2017 (ref number HREC/17/SCHN/37). Outcomes will be disseminated through peer-reviewed journal publications, presentations at international conferences and consumer websites. TRIAL REGISTRATION NUMBER: ACTRN12617000006347.

The relationship between family empowerment and fine motor, gross motor and cognitive skills in young children with cerebral palsy.

BACKGROUND: Family empowerment in families of young children with cerebral palsy (CP) is an important consideration because the first few years of life can be overwhelming for parents. The purpose of this research was to investigate the relationship between family empowerment, fine motor (FM), gross motor (GM) and cognitive development in children with CP who were under 3 years of age. METHODS: Forty-one children with a mean age of 23.8 months participated in this study. The Family Empowerment Scale (FES) was completed by the participants' parents, whereas the FM, GM and cognitive subscales of the Bayley Scales of Infant and Toddler Development Third edition (B-III) were administered by physical therapists. RESULTS: Statistically significant positive correlations were found between the FES total and B-III raw scores for FM, GM and cognitive subscales with coefficients ranging from 0.35 to 0.41. Significant relationships were also found between the FES Community subscale and the B-III FM, GM and cognitive subscales. CONCLUSIONS: This study provides evidence of a relationship between family empowerment and FM, GM and cognitive abilities in young children with CP, with a greater severity of impairments related to lower levels of caregiver empowerment.

When a baby is diagnosed at high risk of cerebral palsy: understanding and meeting parent need.

PURPOSE: To explore the experiences and needs of parents with an infant diagnosed at risk of cerebral palsy (CP) and to receive feedback on a new online support program (Parenting Acceptance and Commitment Therapy; PACT). MATERIALS AND METHODS: Eleven parents from eight family dyads (8 mothers, 3 fathers) with infants under 24 months of age (age range 10-24 months) recently diagnosed as at risk of CP as well as fourteen clinicians participated in this qualitative study through interviews. RESULTS: Parents reported conflicting emotions and grief. Further, they reported that they wanted honesty, support and normalisation of their experiences from clinicians. Parents pointed to a gap in service delivery in terms of non-pathologising psychological support specific to their needs. Clinicians reported a lack of skills in supporting distressed parents. Parent feedback on PACT was positive, with parents receptive to the online delivery. CONCLUSIONS: Parents want acceptance without pathologisation, honesty, and flexible support. Clinicians working with children at risk of CP need training in grief awareness and support for their own coping. Health services should consider building better parental support into their systems of care.IMPLICATIONS FOR REHABILITATIONParents want clinicians to be honest, supportive and to normalise their griefClinicians in rehabilitation would benefit from up-skilling in grief supportParental support should be built into systems of care for children with cerebral palsy.

The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway.

PURPOSE: Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. MATERIALS AND METHODS: A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. RESULTS: Of the respondents, 64-70% report that they assess cognition in children with all degrees of motor impairment, and 70-80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. CONCLUSIONS: The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.Implications for rehabilitationChildren with cerebral palsy (CP) have increased risk of cognitive impairments that require intervention.Assessments of cognition should be offered to all children with CP because the nature of cognitive impairments may vary.Introducing a follow-up protocol of how and when to perform cognitive assessments is a step towards ensuring equal access to the services for all children with CP.A quality improvement project might be a viable method for implementing a protocol into everyday clinical practice.