Jenny Ziviani

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

Publisher: Wiley

Date: 05-08-2019

DOI: 10.1111/1440-1630.12600

Abstract: To investigate measurement properties and feasibility of upper limb activity measures in children aged 5-18 years with bilateral cerebral palsy (CP). 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. 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. 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 s le size and content validity studies for PROMs.

Participate CP 2: optimising participation in physically active leisure for children with cerebral palsy – protocol for a phase III randomised controlled trial

Publisher: BMJ

Date: 10-2023

DOI: 10.1136/BMJOPEN-2023-075570

Hand function and self‐care in children with cerebral palsy

Publisher: Wiley

Date: 22-12-2021

DOI: 10.1111/DMCN.14783

Abstract: To examine the relationship between self‐care and bimanual performance in children aged 8 to 12 years with cerebral palsy (CP). 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. 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. 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. 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.

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

Publisher: Informa UK Limited

Date: 17-12-2021

DOI: 10.1080/01942638.2020.1856286

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

Publisher: Wiley

Date: 25-05-2020

DOI: 10.1111/1440-1630.12670

Impact of early intervention parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

Publisher: Informa UK Limited

Date: 20-11-2022

DOI: 10.1080/09638288.2022.2143579

Abstract: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

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

Publisher: Wiley

Date: 19-05-2020

DOI: 10.1111/DMCN.14561

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

Publisher: Wiley

Date: 10-01-2019

DOI: 10.1111/DMCN.14143

Abstract: 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. 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. 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. 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. 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.

Executive Decision-Making: Piloting Project ECHO® to Integrate Care in Queensland

Publisher: Ubiquity Press, Ltd.

Date: 2020

DOI: 10.5334/IJIC.5512

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

Publisher: Wiley

Date: 07-10-2019

DOI: 10.1111/DMCN.14049

Abstract: 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. 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. 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. 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. 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.

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

Publisher: Informa UK Limited

Date: 19-02-2023

DOI: 10.1080/02646838.2023.2180142

Shame and guilt in the postnatal period: a systematic review

Publisher: Informa UK Limited

Date: 26-04-2021

DOI: 10.1080/02646838.2020.1754372

Discovery Projects - Grant ID: DP110104292

Start Date: 2011

End Date: 12-2013

Amount: $200,000.00

Funder: Australian Research Council

Discovery Projects - Grant ID: DP0344050

Start Date: 2003

End Date: 12-2006

Amount: $150,000.00

Funder: Australian Research Council

Discovery Projects - Grant ID: DP0210249

Start Date: 2002

End Date: 12-2004

Amount: $181,000.00

Funder: Australian Research Council