Women pregnant after previous perinatal loss: relationships between adult attachment, shame, and prenatal psychological outcomes.

BACKGROUND: Insecure adult attachment, shame, self-blame, and isolation following perinatal loss place bereaved women at risk of adverse psychological outcomes, which can impact child and family outcomes. To date, no research has considered how these variables continue to influence women's psychological health in pregnancy subsequent to loss. OBJECTIVE: This study explored associations between prenatal psychological adjustment (less grief and distress) and adult attachment, shame, and social connectedness, in women pregnant after loss. METHOD: Twenty-nine pregnant Australian women accessing a Pregnancy After Loss Clinic (PALC) completed measures of attachment styles, shame, self-blame, social connectedness, perinatal grief, and psychological distress. RESULTS: Four 2-step hierarchical multiple regression analyses revealed adult attachment (secure/avoidant/anxious; Step 1), shame, self-blame, and social connectedness (Step 2) explained 74% difficulty coping, 74% total grief, 65% despair, and 57% active grief. Avoidant attachment predicted more difficulty coping and higher levels of despair. Self-blame predicted more active grief, difficulty coping, and despair. Social connectedness predicted lower active grief, and significantly mediated relationships between perinatal grief and all three attachment patterns (secure/avoidant/anxious). CONCLUSIONS: Although avoidant attachment and self-blame can heighten grief in pregnancy after loss, focusing on social connectedness may be a helpful way for prenatal clinicians to support pregnant women during their subsequent pregnancy - and in grief.

Fidelity of Delivery in a Multisite Randomized Clinical Trial of Intervention Efficacy for Infants With Unilateral Cerebral Palsy.

PURPOSE: To investigate the reliability of a measure of fidelity of therapist delivery, quantify fidelity of delivery, and determine factors impacting fidelity in the Rehabilitation EArly for Congenital Hemiplegia (REACH) clinical trial. METHODS: Ninety-five infants (aged 3-9 months) with unilateral cerebral palsy participated in the REACH clinical trial. The Therapist Fidelity Checklist (TFC) evaluated key intervention components. Video-recorded intervention sessions were scored using the TFC. RESULTS: Inter- and intrarater reliability was percentage agreement 77% to 100%. Fidelity of delivery was high for 88.9% of sessions and moderate for 11.1% of sessions. Sessions with moderate scores included infants receiving infant-friendly bimanual therapy and occurred at the intervention midpoint or later. No significant relationships were found for TFC scores and infant age, manual ability, or parent engagement. CONCLUSIONS: Fidelity of delivery was high for the REACH trial in most intervention sessions. Standardized therapist training with intervention manuals and monthly peer-to-peer support likely contributed to these results.

Program for the Education and Enrichment of Relational Skills for adolescents with an acquired brain injury: A randomized controlled trial.

AIM: To test the efficacy of a group social skills intervention on social functioning in adolescents with a brain injury. METHOD: Thirty-six adolescents (mean age 14y, SD 1y 8mo, age range 12y 1mo-16y 3mo; 17 females) with acquired brain injury (ABI; ≥12mo postintervention; n=19) or cerebral palsy (n=17) were randomly allocated to the Program for the Education in Enrichment of Relational Skills (PEERS) or usual care. The primary outcome was the Social Skills Improvement System-Rating Scales (SSIS-RS). Secondary outcomes were scores derived from the Test of Adolescent Social Skills Knowledge-Revised (TASSK-R), Social Responsiveness Scale, Second Edition, and Quality of Socialization Questionnaire. Between-group differences postintervention and at the 26-week retention time point were compared using linear mixed modelling for continuous outcomes and Poisson regression for count data. RESULTS: There were no between-group differences on the primary outcome (SSIS-RS). Regarding the secondary outcomes, the PEERS-exposed group achieved significantly greater improvements on the TASSK-R (mean difference [MD]=6.8, 95% confidence interval [CI]=4.8-8.8, p<0.001), which were maintained at the 26-week retention time point (MD=8.1, 95% CI=6.0-10.2, p<0.001). PEERS was also associated with a significant increase in parent-reported invited get-togethers at 26 weeks (incidence rate ratio=4.0, 95% CI=1.0-16.0, p=0.05). INTERPRETATION: Adolescents with brain injury who completed the PEERS learned and retained social knowledge and increased social participation.

Hand function and self-care in children with cerebral palsy.

AIM: To examine the relationship between self-care and bimanual performance in children aged 8 to 12 years with cerebral palsy (CP). METHOD: This was a cross-sectional study of 74 children with CP (unilateral n=30, bilateral n=44; 48 males, 26 females; median age 9y 8mo [25th, 75th centiles 9y 1mo, 10y 8mo], Manual Abilities Classification System level I=30, II=28, III=16). Self-care was measured using the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), and bimanual performance using the Assisting Hand Assessment (AHA) and Both Hands Assessment (BoHA). Measures of cognition, behavioural regulation, inattention, and gross motor function were included. Analyses used a directed acyclic graph to select variables for linear regression modelling. RESULTS: Higher AHA and BoHA scores were associated with higher PEDI-CAT scores. An increase of 1 AHA unit was associated with an increase of 0.12 PEDI-CAT scores, and a 1 BoHA unit increase was associated with an increase of 0.17 PEDI-CAT scores. The BoHA accounted for 57% of variance in PEDI-CAT scores for children with bilateral CP, while BoHA and cognition accounted for 68% of variance. The AHA accounted for 40% of variance in PEDI-CAT scores for unilateral CP with no effect of cognition on self-care. INTERPRETATION: Self-care was strongly and positively associated with bimanual performance. Associations between self-care and bimanual performance differed for those with unilateral and bilateral CP. WHAT THIS PAPER ADDS: There is a strong positive relationship between self-care and bimanual performance for unilateral and bilateral cerebral palsy (CP). Both Hands Assessment (BoHA) scores have a stronger association with self-care than Assisting Hand Assessment scores. BoHA scores also account for more variation in self-care. There is a strong positive relationship between self-care and cognition overall. The effect of cognition on self-care performance differed for bilateral and unilateral CP.

Participation predictors for leisure-time physical activity intervention in children with cerebral palsy.

AIM: To determine the predictors of magnitude of change in response to a participation-focused leisure-time physical activity intervention in children with cerebral palsy (CP) using the ParticiPAte CP protocol. METHOD: We included 33 children (16 males, 17 females) aged 8 to 12 years (mean age=10y, SD=1y 6mo) with CP with pre/postintervention data from a wait-list randomized trial. The hypothesized linear predictors of change in primary outcomes (Canadian Occupational Performance Measure [COPM]-performance and COPM-satisfaction, Belief in Goal Self-Competence Scale (BiGSS), and minutes per day moderate-to-vigorous physical activity [MVPA]) were: age; Gross Motor Function Classification System level; comorbid autism spectrum disorder (ASD); Goal Attainment Scaling T score; Problems in Schools Questionnaire; Physical Activity Climate Questionnaire; Motives for Physical Activities Measure-Revised; and stage of behaviour change. Multivariable models were selected using the Bayesian information criterion. RESULTS: Overcoming barriers to participation, age, and comorbid ASD explained 49% of the variance in change in COPM-performance. Being motivated by interest and/or enjoyment and age explained 32% of the variance in change in COPM-satisfaction. Being motivated by physical activity competence or appearance (extrinsic motivation) explained 24% of the variance in change in BiGSS. Parental autonomy supportiveness, overcoming barriers to participation, appearance motivation, and baseline MVPA explained 59% of the variance in change in MVPA. INTERPRETATION: These findings support a behaviour paradigm for conceptualizing physical activity in children with CP. WHAT THIS PAPER ADDS: Children who met their treatment goals showed a greater increase in physical activity participation. Children who were more intrinsically motivated by physical activity at baseline improved more. Being older and having a comorbid diagnosis of autism spectrum disorder were associated with an attenuated effect of the therapy.

Shame and guilt in the postnatal period: a systematic review.

Objective: The aim of this review was to explore the unique contribution of shame (negative evaluation of the self) and guilt (negative evaluation of behaviour) to postnatal psychological symptoms. Background: Although shame and guilt are related to psychological symptoms, the separate effect of each in postnatal psychological symptoms are not yet known. Methods: Seven electronic databases were systematically reviewed for articles on: (1) quantitative measures of shame, guilt, and psychological symptoms (2) in the postnatal period for infants under two years of age (3) published in English. Results: Of the 1,615 articles retrieved using PRISMA guidelines, five met criteria and were analysed independently by two reviewers using the STROBE criteria. In mothers, shame was significantly related to stress and postnatal depression. Shame significantly predicted postnatal depression. Guilt was significantly related to postnatal depression; however, the relationship was substantially reduced when included with shame. In fathers, shame, but not guilt, was significantly related to stress, anxiety, and depression. Conclusion: Shame and guilt are trans-diagnostic phenomena, negatively impacting on postnatal psychological health, and potentially the parent-child relationship. More research is needed to develop awareness of the unique effects of shame and guilt to optimise perinatal intervention.

Hand Function in 8- to 12-Year-Old Children with Bilateral Cerebral Palsy and Interpretability of the Both Hands Assessment.

AIM: To describe bimanual performance in a sample of Australian children with bilateral cerebral palsy (CP) and, examine the qualitative meaning (or interpretability) of scores on the Both Hands Assessment (BoHA). METHODS: Children with bilateral CP aged 8-12 years (n = 54) classified Manual Ability Classification System (MACS) level I = 20, II = 18, III = 16 were examined using the BoHA. RESULTS: Bimanual performance was significantly different across MACS levels I-III (p < 0.001). Mean (95%CI) BoHA-unit for each MACS level were I = 85 (81-89), II = 72 (68-76) and III = 53 (49-56). Children with asymmetrical hand use (≥ 20% difference between upper limbs, n = 10) were classified MACS levels II and III and had a mean (95%CI) BoHA-unit of 56 (51-62). Children with symmetrical hand use were classified in MACS level I-III and had a mean (95%CI) BoHA-unit of 74 (70-79). CONCLUSIONS: The BoHA quantified observations of bimanual performance for children with bilateral CP, differentiated between MACS levels I-III and provided clinically meaningful information. The BoHA may facilitate tailoring of upper limb intervention. Future research is recommended to examine inter-rater and intra-rater reliability and responsiveness of the BoHA, as well as longitudinal studies of bimanual hand skill development in children with bilateral CP.

Self-care performance in children with cerebral palsy: a longitudinal study.

AIM: To investigate self-care developmental trajectories in children with cerebral palsy (CP) across all functional ability levels, according to Manual Ability Classification System (MACS) levels. METHOD: This was a prospective longitudinal population-based study of 71 children aged from 2 years 6 months to 12 years, with CP (47 [66%] males, 24 [34%] females). Pediatric Evaluation of Disability Inventory (PEDI) measures were taken at 2 years 6 months, 3, 4, and 5 years, and the PEDI - Computer Adaptive Test (PEDI-CAT) between 8 and 12 years. At 8 to 12 years, children were classified in MACS levels I (21; 30%), II (22; 31%), III (16; 23%), IV (6; 8%), and V (6; 8%). Longitudinal analysis of the PEDI Functional Skills Scale self-care and PEDI-CAT daily activities domains used the published linking equation, and multilevel mixed-effects regression modelling with interaction between age and MACS. RESULTS: Between 5 and 12 years of age, children classified in MACS levels I to III continued to show progress in self-care development (PEDI-CAT scaled scores estimated change per year: I, 0.72; II, 0.49; III, 0.48). Children classified in MACS level IV showed an upward non-significant trend between 5 and 8 to 12 years (estimated change 0.42; 95% confidence interval [CI] -0.04 to 0.88). Children in MACS level V showed a decline in self-care (estimated change: -0.65; 95% CI -1.16 to -0.14). INTERPRETATION: Self-care development attained by 8 to 12 years of age was related to the severity of manual ability impairment. Application of the linking equation from PEDI to PEDI-CAT is somewhat uncertain at the extreme lower end of the scale. Our study supports recommendations for items to be added to the PEDI-CAT to address floor effect.

Canine-assisted occupational therapy for children on the autism spectrum: Parents' perspectives.

INTRODUCTION: Canine-assisted therapy is thought to facilitate the engagement of children on the autism spectrum within therapy sessions. There is limited research, however, about how canine-assisted occupational therapy with children on the autism spectrum enhances their engagement in therapy and therapy outcomes. The aim of this study was to gain the perspectives of parents who observed and participated in occupational therapy sessions, with canine assistance, with their children on the autism spectrum. METHOD: This study was guided by a qualitative interpretive description design. A total of 10 parents participated in one semi-structured interview to describe their experience of canine-assisted occupational therapy with their child. Inductive thematic analysis was used to analyse the data. RESULTS: Four themes emerged which described parents' experiences of canine-assisted occupational therapy with their children on the autism spectrum, these were: therapist qualities, goal-directed (canine-assisted) therapy, emotional safety, and therapy engagement. Parents described that the inclusion of the therapy dog appeared to provide emotional safety within the sessions facilitating rapport building between their child and the therapist. However, parents indicated that the inclusion of the therapy dog alone was not sufficient to facilitate therapy engagement for their children. The skills and qualities of the therapist as well as the provision of goal-directed therapy were considered essential for children's engagement. CONCLUSION: The findings from this study contribute to our understanding of the impact of canine-assisted occupational therapy for children on the autism spectrum. This sparsely researched area requires more evaluation to ensure best practice canine-assisted occupational therapy for children on the autism spectrum.

"The connection just happens": Therapists' perspectives of canine-assisted occupational therapy for children on the autism spectrum.

INTRODUCTION: The inclusion of a therapy dog has been suggested as a means of facilitating therapy engagement for children on the autism spectrum within occupational therapy sessions. The aim of this study was to seek an understanding of possible benefits and challenges of this practice from the perspectives of occupational therapists, trained in canine-assisted therapy. METHOD: This study adopted an interpretive descriptive design. Six therapists participated in a semi-structured, telephone interview to describe their experience of working as canine-assisted occupational therapists with children on the autism spectrum. An inductive thematic analysis was used to analyse the data. RESULTS: Two overarching themes emerged. The first captured how therapists incorporated their therapy dog into sessions to accelerate children's initial motivation to engage within the therapy process. Specifically, therapists discussed how involving their therapy dog facilitated the development of a secure relationship, supported autonomous task involvement and increased children's sense of confidence. Second, they identified challenges inherent in their practice, such as the therapist's ability to maintain a goal-directed focus when including a therapy dog. Beyond the challenges within their own practice sessions, therapists reflected on issues thought to impact the occupational therapy profession since starting practice as a canine-assisted occupational therapist. CONCLUSION: Findings from this study contribute to the current understanding of how occupational therapists incorporate therapy dogs into their practice with children on the autism spectrum. The specific challenges noted by the therapists highlighted the importance of canine-assisted occupational therapy being viewed as an advanced scope of practice within Australia and, therefore, the need for training and practice guidelines to be established.

Strategies occupational therapists use to engage children and parents in therapy sessions.

Occupational therapists implicitly rely on tacit knowledge to inform the strategies they use to engage children and parents in a therapy session. OBJECTIVE: To identify strategies occupational therapists use in a therapy session to engage children and parents. METHODS: A qualitative approach was employed using interpretive description methodology. This involved seven therapy session observations with six occupational therapists (involving child, parent and therapist) and a key informant interview with the therapist after each session. Thematic analysis was undertaken. RESULTS: Two themes emerged. (a) 'Engaging the child' included 'building a connection', 'attending to feelings', 'thoughts and behaviours', 'structuring or designing the session', 'giving choice and respecting their choice', 'use of self', 'helping the child feel success' and 'helping the child understand and explore'. (b) 'Engaging the parent' included 'connecting', 'listening', 'explaining', 'demonstrating anddiscussing', 'including the parent and valuing their input' and 'collaborating'. CONCLUSIONS: The strategies therapists used to engage children and families can be mapped with autonomy, relatedness- and competence-supportive strategies of Self-Determination Theory. Therapist attunement and responsiveness to the child as well as collaboration with the parent were strategies that represented all aspects of SDT.

Self-care and manual ability in preschool children with cerebral palsy: a longitudinal study.

AIM: To describe longitudinal development of self-care and its relationship to manual ability in children with cerebral palsy (CP) aged 18 months to 5 years across all functional abilities. METHOD: This was a prospective longitudinal population-based study of 290 children with CP (178 [61%] males, 112 [39%] females). Self-care was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). At 60 months (n=242), children were classified using the Manual Ability Classification System (MACS); 113 in level I (47%), 61 in MACS level II (25%), 24 in MACS level III (10%), 14 in MACS level IV (6%), and 30 in MACS level V (12%). Measures were taken at 18 months, 24 months, 30 months, 36 months, 48 months, and 60 months of age. Longitudinal analyses were performed using mixed-effects linear regression models. RESULTS: Self-care development achieved by 60 months was negatively associated with the severity of manual ability impairment. Distinct self-care developmental trajectories were found with estimated changes in PEDI self-care scaled scores per month: 0.61 for MACS level I, 0.46 for MACS levels II, 0.31 for MACS level III, 0.16 for MACS level IV, and 0.03 for MACS level V. Children classified in MACS level V had the lowest level of self-care skills at 18 months and showed no progress in self-care development. INTERPRETATION: This study reports rate of self-care development in preschool children with CP. Self-care performance was highest in children with greatest manual ability. Clinicians may use rates of change to predict or monitor self-care performance. PEDI trajectories inform goal setting in discussions with families regarding expected levels of independence in self-care. WHAT THIS PAPER ADDS: Distinct self-care developmental trajectories in children with cerebral palsy were found according to Manual Ability Classification System (MACS) levels. Children in MACS levels IV and V with epilepsy did not show any significant change in self-care. Children in MACS levels IV and V without epilepsy demonstrated small yet significant gains in self-care performance.

AUTOCUIDADO Y HABILIDAD MANUAL EN NIÑOS PREESCOLARES CON PARÁLISIS CEREBRAL: UN ESTUDIO LONGITUDINAL: OBJETIVO: Describir el desarrollo longitudinal del autocuidado en niños con parálisis cerebral (PC) de edades comprendidas entre los 18 meses y los 5 años de edad en todas las habilidades funcionales y su relación con la habilidad manual. MÉTODO: Se trata de un estudio prospectivo longitudinal basado en una población de 290 niños con PC (178 [61%] niños, 112 [39%] niñas). El autocuidado se evaluó utilizando el Inventario de Evaluación Pediátrica de Discapacidad (Pediatric Evaluation of Disability Inventory, PEDI). A los 60 meses (n=242), los niños se clasificaron usando el Sistema de Clasificación de la Habilidad Manual (Manual Ability Classification System, MACS); 113 en el nivel I (47%), 61 en el nivel MACS II (25%), 24 en el nivel MACS III (10%), 14 en el nivel MACS IV (6%), y 30 en el nivel MACS V (12%). Las mediciones se tomaron a los 18 meses, 24 meses, 30 meses, 36 meses, 48 meses, y 60 meses de edad. Los análisis longitudinales se realizaron utilizando modelos de regresión lineal de efectos mixtos. RESULTADOS: El desarrollo del autocuidado logrado a los 60 meses se asoció negativamente a la severidad de la alteración de la habilidad manual. Se encontraron trayectorias del desarrollo del autocuidado distintas con cambios estimados de los puntajes escalados del autocuidado de PEDI por mes: 0,61 para el nivel MACS de I, 0,46 para el nivel MACS de II, 0,31 para el nivel MACS de III, 0,16 para el nivel MACS de IV, y 0,03 para el nivel MACS de V. Los niños clasificados con el nivel MACS de V tuvieron el nivel más bajo de las destrezas de autocuidado a los 18 meses y no mostraron progreso en el desarrollo del autocuidado. INTERPRETACIÓN: Este estudio informa sobre la tasa de desarrollo del autocuidado en niños preescolares con PC. El desempeño del autocuidado fue mayor en niños con la mayor habilidad manual. Los profesionales podrian utilizar las tasas de cambio para predecir o monitorizar el desempeño del autocuidado. Las trayectorias de PEDI informan el establecimiento de objetivos, mediante un dialogo con las familias, basados en los niveles de independencia esperados en el autocuidado.

AUTO-CUIDADO E HABILIDADE MANUAL EM CRIANÇAS PRÉ-ESCOLARES COM PARALISIA CEREBRAL: UM ESTUDO LONGITUDINAL: OBJETIVO: Descrever o desenvolvimento longitudinal do auto-cuidado em crianças com paralisia cerebral (PC) com idades entre 18 meses e 5 anos em todos os níveis de capacidade funcional e sua relação com a habilidade manual. MÉTODO: Este estudo populacional com desenho prospectivo e longitudinal incluiu 290 crianças com PC (178 [61%] do sexo masculino, 112 [39%] do sexo feminino). O auto-cuidado foi avaliado usando o Inventário pediátrico de avaliação da disfunção (PEDI). Aos 60 meses (n=242), as crianças foram classificadas usando o Sistema de Classificação da Habilidade Manual (MACS); 113 no nível I (47%), 61 no nível MACS II (25%), 24 no nível MACS III (10%), 14 no nível MACS level IV (6%), e 30 no nível MACS V (12%). As medidas foram realizadas aos 18, 24, 30, 36, 48 e 60 meses de idade. RESULTADOS: O desenvolvimento do auto-cuidado atingido aos 60 meses foi negativamente associado com a severidade do comprometimento da habilidade manual. Trajetórias distintas do desenvolvimento do auto-cuidado foram encontradas com mudanças estimadas nos scaled escores de auto-cuidado do PEDI por mês: 0,61 para nível MACS I, 0.46 para nível MACS II, 0,31 para nível MACS III, 0,16 para nível MACS IV, e 0,03 para nível MACS V. Crianças classificadas no nível MACS V tiveram o menor nível de habilidades de auto-cuidado aos 18 meses e não mostraram nenhum progresso no desenvolvimento do auto-cuidado. INTERPRETAÇÃO: Este estudo relata a taxa do desenvolvimento do auto-cuidado em crianças pré-escolares com PC. O desempenho do auto-cuidado foi o mais alto em crianças com maior habilidade manual. Clínicos podem usar as taxas de mudança para predizer ou monitorar o desempenho do auto-cuidado. As trajetórias do PEDI informam o estabelecimento de objetivos nas discussões com as famílias com relação aos níveis esperados de independência no auto-cuidado.

Stability of the Manual Ability Classification System in young children with cerebral palsy.

AIM: To examine the stability over time of the Manual Ability Classification System (MACS) levels in children with cerebral palsy (CP) aged 18 to 60 months. METHOD: This was a prospective longitudinal population-based study of 252 Australian children (160 males [63%] 92 females [37%]; mean age [SD] 41.7mo [14], range 17.2mo-69.2mo) with CP. Children were classified at 18 months (n=70), 24 months (n=131), 30 months (n=173), 36 months (n=209), 48 months (n=226), and 60 months (n=221) of age. Stability of the MACS was examined using the proportion of specific positive agreement and transition proportions, which are measures of agreement. RESULTS: There were 1030 unique observations, with each of the 252 participants seen between two and six occasions (median=4). Average specific positive agreement over the study period was 76% for MACS level I, 67% for level II, 50% for level III, 51% for level IV, and 83% for level V. MACS levels I and V have the highest degree of stability, while levels III and IV have the lowest. We show how this may be explained by the proportion of children in each MACS level. INTERPRETATION: Using measures of agreement rather than measures of reliability provides accurate information when measuring stability over time of an ordinal classification system. The relative stability of MACS levels can be explained by the proportion of children in each level. WHAT THIS PAPER ADDS: Children classified in Manual Ability Classification System (MACS) levels III and IV change levels at next assessment about 50% of the time. Children should be assessed with the MACS regularly, particularly those in levels III and IV. Stability within ordinal classification level categories can be predicted using a measurement error model. Transition proportions or specific agreement is recommended for reporting stability of ordinal classification systems.

Estabilidade do Sistema de Classificação da Habilidade Manual (MACS) em crianças jovens com paralisia cerebral OBJETIVO: Examinar a estabilidade ao longo do tempo dos níveis do Sistema de Classificação da Habilidade Manual (MACS) em crianças com paralisia cerebral (PC) com idade entre 18 e 60 meses. MÉTODO: Este foi um estudo prospectivo de caráter longitudinal, com amostra baseada no estudo da população de 252 crianças Australianas (160 meninos [63%], 92 meninas [37%]; idade média [desvio padrão] de 41,7 meses [14], variação de 17, 2 a 69, 2 meses de idade]) com PC. As crianças foram classificadas aos 18 meses (n = 70), 24 meses (n = 131), 30 meses (n = 173), 36 meses (n = 209), 48 meses (n = 226), e aos 60 meses (n = 221) de idade. A estabilidade do MACS foi examinada utilizando a proporção de concordância positiva específica e proporções de transição, sendo estas as medidas de concordância. RESULTADOS: Foram realizadas um total de 1.030 observações com os 252 participantes, os quais foram avaliados individualmente entre dois e seis momentos (média = 4). A média de concordância específica positiva durante o estudo foi de 76% para MACS nível I, 67% para nível II, 50% para nível III, 51% para nível IV, e 83% para nível V. Os classificados com MACS nível I e V tiveram os maiores graus de estabilidade, enquanto os classificados com os níveis III e IV tiveram os menores graus de estabilidade. Estes resultados podem ser explicados pela proporção de crianças classificadas em cada nível do MACS. INTERPRETAÇÃO: A utilização de medidas de concordância ao invés de medidas de confiabilidade proporciona informações mais precisas quando se mensura estabilidade ao longo do tempo com um sistema de classificação ordinal. A estabilidade relativa dos níveis do MACS pode ser explicada pela proporção de crianças classificadas em cada nível.

Estabilidad del Sistema de Clasificación de Habilidad Manual (MACS) en niños pequeños con parálisis cerebral OBJETIVO: Examinar la estabilidad en el tiempo de los niveles del Sistema de Clasificación de Habilidad Manual (MACS) en niños con parálisis cerebral (PC) de 18 a 60 meses. MÉTODO: Este fue un estudio prospectivo longitudinal basado en la población de 252 niños australianos (160 [63%] hombres, 92 mujeres [37%]; edad media [DE] 41.7mo [14], rango 17.2mo-69.2mo]) con PC. Los niños se clasificaron a los 18 meses (n = 70), 24 meses (n = 131), 30 meses (n = 173), 36 meses (n = 209), 48 meses (n = 226) y 60 meses (n = 221) de edad. La estabilidad del MACS se examinó utilizando la proporción de acuerdo positivo específico y las proporciones de transición, que son medidas de acuerdo. RESULTADOS: Con cada uno de los 252 participantes vistos entre dos y seis ocasiones (mediana = 4) hubo 1030 observaciones únicas. La concordancia positiva específica promedio durante el período de estudio fue de 76% para MACS nivel I, 67% para nivel II, 50% para nivel III, 51% para nivel IV y 83% para nivel V. Los niveles I y V de MACS son los más altos de estabilidad, mientras que los niveles III y IV tienen los más bajos. Mostramos cómo esto puede explicarse por la proporción de niños en cada nivel de MACS. INTERPRETACIÓN: El uso de medidas de acuerdo - en lugar de medidas de confiabilidad - proporciona información precisa cuando se mide la estabilidad en el tiempo de un sistema de clasificación ordinal. La estabilidad relativa de los niveles de MACS puede explicarse por la proporción de niños en cada nivel.

Protocol for the Yapatjarrathati project: a mixed-method implementation trial of a tiered assessment process for identifying fetal alcohol spectrum disorders in a remote Australian community.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a highly prevalent neurodevelopmental disorder associated with prenatal alcohol exposure. Early identification can improve functioning for individuals and reduce costs to society. Gold standard methods of diagnosing FASD rely on specialists to deliver intensive, multidisciplinary assessments. While comprehensive, prevalence rates highlight that this assessment model cannot meet demand, nor is it feasible in remote areas where specialist services are lacking. This project aims to expand the capabilities of remote practitioners in north Queensland, Australia, where 23-94% of the community identify as First Nations people. Integrating cultural protocols with the implementation science theories of Knowledge-To-Action, Experience-Based Co-Design, and RE-AIM, remote practitioners with varying levels of experience will be trained in a co-designed, culturally appropriate, tiered neurodevelopmental assessment process that considers FASD as a potential outcome. This innovative assessment process can be shared between primary and tertiary health care settings, improving access to services for children and families. This project aims to demonstrate that neurodevelopmental assessments can be integrated seamlessly with established community practices and sustained through evidence-based workforce development strategies. METHODS: The Yapatjarrathati project (named by the local First Nations community and meaning 'to get well') is a mixed-method implementation trial of a tiered assessment process for identifying FASD within a remote Australian community. In collaboration with the community, we co-designed: (a) a culturally sensitive, tiered, neurodevelopmental assessment process for identifying FASD, and (b) training materials that up-skill remote practitioners with varying levels of expertise. Qualitative interviews for primary, secondary and end users will be undertaken to evaluate the implementation strategies. RE-AIM will be used to evaluate the reach, effectiveness, adoption, implementation and maintenance of the assessment and training process. DISCUSSION: Co-designed with the local community, integrated with cultural protocols, and based on implementation science theories, the assessment and training process from this project will have the potential to be scaled-up across other remote locations and trialed in urban settings. The Yapatjarrathati project is an important step towards increasing the availability of neurodevelopmental services across Australia and empowering remote practitioners to contribute to the FASD assessment process.

Neuromotor performance in infants before and after early open-heart surgery and risk factors for delayed development at 6 months of age.

BACKGROUND: Early identification of infants with CHD at heightened risk of developmental delays can inform surveillance priorities. This study investigated pre-operative and post-operative neuromotor performance in infants undergoing open-heart surgery, and their developmental status at 6 months of age, to identify risk factors and inform care pathways. METHODS: Infants undergoing open-heart surgery before 4 months of age were recruited into a prospective cohort study. Neuromotor performance was assessed pre-operatively and post-operatively using the Test of Infant Motor Performance and Prechtl's Assessment of General Movements. Development was assessed at 6 months of age using the Ages and Stages Questionnaire third edition. Pre-operative and post-operative General Movements performance was compared using McNemar's test and test of infant motor performance z-scores using Wilcoxon's signed rank test. Risk factors for delayed development at 6 months were explored using logistic regression. RESULTS: Sixty infants were included in this study. In the 23 (38%) infants. A total of 60 infants were recruited. In the 23 (38%) infants assessed pre-operatively, there was no significant difference between pre- and post-operative performance on the GMs (p=0.63) or TIMP (p=0.28). At discharge, 15 (26%) infants presented with abnormal GMs, and the median TIMP z-score was -0.93 (IQR: -1.4 to -0.69). At 6 months, 28 (52.8%) infants presented with gross motor delay on the ASQ-3, significantly negatively associated with gestational age (p=0.03), length of hospital stay (p=0.04) and discharge TIMP score (p=0.01). CONCLUSIONS: Post-operative assessment using the GMs and TIMP may be useful to identify infants requiring individualised care and targeted developmental follow-up. Long-term developmental surveillance beyond 6 months of age is recommended.

A systematic review of upper limb activity measures for 5- to 18-year-old children with bilateral cerebral palsy.

AIM: To investigate measurement properties and feasibility of upper limb activity measures in children aged 5-18 years with bilateral cerebral palsy (CP). METHODS: Five electronic databases were searched to identify measures of upper limb activity with published psychometric data for children with bilateral CP aged 5-18 years. Measures included both Patient-Reported Outcome Measures (PROMs) and observational measures. The COnsensus-based Standards for selection of health Measurement Instruments checklist was used to evaluate methodological quality of studies for each measure. RESULTS: Forty-eight measures were identified, eight of which met inclusion criteria for reliability and validity. Four PROMs were included: the ABILHAND-Kids and Children's Arm Rehabilitation Measure are parent questionnaires measuring overall manual ability; the ACTIVLIM-CP is a parent questionnaire measuring global activity (upper and lower extremity) performance, and, the Pediatric Upper Limb Measure, Short Form is a child self-report questionnaire. Four observational measures were included: the Both Hands Assessment (BoHA) is an observational measure of bimanual activity performance; the Melbourne Assessment of Unilateral Upper Limb Function and the Melbourne Assessment 2 measure quality of movement of each upper limb separately, and the Peabody Developmental Motor Scales-Second Edition assesses fine motor skill capacity in young children. Based upon available evidence, the most suitable PROM for evaluation of upper limb activity in children with bilateral CP is the ACTIVLIM-CP, and the most suitable observational measure is the BoHA. CONCLUSION: Selection of upper limb measures depend on clinical information required and available resources. The BoHA is the only observational-based assessment which measures bimanual upper limb activity performance in children with bilateral CP. Recommendation for future measurement studies include familiarisation with the standards required for excellence, which include adequate sample size and content validity studies for PROMs.

Measures of Parent Engagement for Children Receiving Developmental or Rehabilitation Interventions: A Systematic Review.

AIM: To examine the conceptual and clinometric properties of measures for parent engagement in developmental or rehabilitation interventions for children and youth (<18 years of age). METHODS: Four electronic databases were searched. Studies were included if they reported measures of at least one domain of parent engagement (i.e. affective, cognitive or behavioral). Reviewers independently identified measures and evaluated studies using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and the CanChild Outcome Measures Rating Form. RESULTS: A total of 9,500 unique papers were retrieved, and 36 reported parent engagement measurement. Four measures met inclusion criteria: the Parent Involvement Index (PII), the Parent Participation Measure (PPM), the General Adherence subscale of the Medical Outcomes Study (GAMOS) and the Triadic Intervention and Evaluation Rating Scale (TIERS). No measure captured all domains of in-session parent engagement. Two addressed out-of-session parent engagement. There were limitations in validity and reliability. CONCLUSIONS: Few measures of parent engagement are available. Existing measures mostly captured the behavioral domain of in-session engagement, and none assessed cognitive or affective aspects of engagement. Out-of-session engagement was infrequently captured. There is currently no comprehensive measure of parent engagement in pediatric developmental and rehabilitation services that demonstrates good clinical utility or is conceptually and psychometrically sound.

A randomised controlled trial of a web-based multi-modal therapy program to improve executive functioning in children and adolescents with acquired brain injury.

OBJECTIVE: To examine the efficacy of a multi-modal web-based therapy program, Move it to improve it (Mitii™) delivered at home to improve Executive Functioning (EF) in children with an acquired brain injury (ABI). DESIGN: Randomised Waitlist controlled trial. SETTING: Home environment. PARTICIPANTS: Sixty children with an ABI were matched in pairs by age and intelligence quotient then randomised to either 20-weeks of Mitii™ training or 20 weeks of Care As Usual (waitlist control; n=30; 17 males; mean age=11y, 11m (±2y, 6m); Full Scale IQ=76.24±17.84). Fifty-eight children completed baseline assessments (32 males; mean age=11.87±2.47; Full Scale IQ=75.21±16.76). MAIN MEASURES: Executive functioning was assessed on four domains: attentional control, cognitive flexibility, goal setting, and information processing using subtests from the Wechsler Intelligence Scale for Children (WISC-IV), Delis-Kaplan Executive Functioning System (D-KEFS), Comprehensive Trail Making Test (CTMT), Tower of London (TOL), and Test of Everyday Attention for Children (Tea-Ch). Executive functioning performance in everyday life was assessed via parent questionnaire (Behaviour Rating Inventory of Executive Functioning; BRIEF). RESULTS: No differences were observed at baseline measures. Groups were compared at 20-weeks using linear regression with no significant differences found between groups on all measures of EF. Out of a potential total dose of 60 hours, children in the Mitii™ group completed a mean of 17 hours of Mitii™ intervention. CONCLUSION: Results indicate no additional benefit to receiving Mitii™ compared to standard care. Mitii™, in its current form, was not shown to improve EF in children with ABI.

Clinical feasibility of pre-operative neurodevelopmental assessment of infants undergoing open heart surgery.

AIM: Assessing the neurodevelopmental status of infants with congenital heart disease before surgery provides a means of identifying those at heightened risk of developmental delay. This study aimed to investigate factors impacting clinical feasibility of pre-operative neurodevelopmental assessment of infants undergoing early open heart surgery. METHODS: Infants who underwent open heart surgery prior to 4 months of age participated in this cross-sectional study. The Test of Infant Motor Performance and Prechtl's Assessment of General Movements were undertaken on infants pre-operatively. When assessments could not be undertaken, reasons were ascribed to either infant or environmental circumstances. Demographic data and Aristotle scores were compared between groups of infants who did or did not undergo assessment. Binary logistic regression was used to explore associations. RESULTS: A total of 60 infants participated in the study. Median gestational age was 38.78 weeks (interquartile range: 36.93-39.72). Of these infants, 37 (62%) were unable to undergo pre-operative assessment. Twenty-four (40%) could not complete assessment due to infant-related factors and 13 (22%) due to environmental-related factors. For every point increase in the Aristotle Patient-Adjusted Complexity score, the infants likelihood of being unable to undergo assessment increased by 35% (odds ratio: 0.35; 95% confidence interval: 1.03-1.77, P = 0.03). CONCLUSION: Over half of the infants undergoing open heart surgery were unable to complete pre-operative neurodevelopmental assessment. The primary reason for this was infant-related medical instability. Findings suggest further research is warranted to investigate whether the Aristotle Patient-Adjusted Complexity score might serve as an indicator to inform developmental surveillance with this medically fragile cohort.

Clinical Characteristics of 2 Groups of Children With Feeding Difficulties.

OBJECTIVES: The primary aim of this study was to describe and compare the clinical characteristics of 2 groups of children presenting to a feeding clinic: children with autism spectrum disorder (ASD) and children with a nonmedically complex history (NMC). A secondary aim was to compare participants according to the degree of oral motor impairment, presence of oral hypersensitivity, and clinically significant parent stress. METHODS: Children with feeding difficulties ages between 2 and 6 years were recruited. Prospective data were collected on dietary intake, general development, mealtime behaviors, oral motor skills, oral sensory processing, and parental stress via parent questionnaire and clinical assessment. RESULTS: In total, 68 children (ASD = 33 and NMC  = 35) participated in the study. Both groups presented with a large number of difficult mealtime behaviors. Although stress was elevated in both groups, parents of children in the ASD group reported significantly higher stress levels than those with children in the NMC group (mean difference 27.3 on a percentile scale, 95% confidence interval [CI] 15.5-39.2, P < 0.01). Across both groups, the majority of children presented with mild-to-moderate oral motor impairments (ASD = 28, 85%; NMC = 28, 80%). Children with heightened oral sensory sensitivity consumed significantly fewer unprocessed fruits and vegetables (mean difference 3.3 foods, 95% CI 1.3-5.3, P < 0.01), and their parents reported a significantly greater frequency of difficult mealtime behaviors (mean difference 5.8 behaviors, 95% CI 3.4-8.1, P < 0.01). CONCLUSIONS: Features of feeding difficulty presented similarly across the ASD and NMC groups in this study. Oral motor impairment, oral sensory sensitivity, and parental stress should not be overlooked in the management of children with feeding difficulties, regardless of etiology.