Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study.

BACKGROUND: Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children's neuromotor development in the first year of life. METHODS: In this qualitative study, fourteen families were recruited. Their children were aged 1-3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. RESULTS: Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child's motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child's motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children's illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children's abilities, and to regain self-determination in order to strengthen their self-confidence. CONCLUSIONS: It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children's motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. TRIAL REGISTRATION: Not applicable.

Caregivers' experiences with the new family-centred paediatric physiotherapy programme COPCA: A qualitative study.

BACKGROUND: Caregivers' experiences during early intervention of their infant with special needs have consequences for their participation in the intervention. Hence, it is vital to understand caregivers' view. This study explored caregivers' experiences with the family-centred early intervention programme "COPing with and CAring for infants with special needs" (COPCA). METHODS: The data of this qualitative study were collected after 6 months of COPCA intervention in 15 families with an infant with special needs. COPCA was delivered by paediatric physiotherapists in training to become COPCA coaches. Caregivers filled out a study-specific questionnaire with three open-ended questions addressing (a) their overall experience with COPCA, (b) what aspects of COPCA they had experienced as important, and (c) what they had learned during the intervention process. The answers were analysed using a content analyses approach. RESULTS: Respondents were mothers. Interrater reliability of the content analyses of the three questions was twice excellent (κ = .95 and κ = .92) and once good (κ = .77). The content analysis of the first question resulted in four categories and three subcategories, for example, evaluation of COPCA as a form of intervention and benefit from COPCA. The content analyses of the second question resulted in eight categories, for example, home-based intervention, support from the therapist, and the attainment of competences. The content analyses of the third question generated seven categories and four subcategories, for example, to support the infant autonomously at home and to recognize the competences of the infant, caregiver confidence, and relationship with the infant. CONCLUSIONS: The participating mothers appreciated the COPCA early intervention programme. They especially valued its home-based setting, the support from the coach, and the experience being able to participate as active partners in the intervention make their own decisions. This means that the mothers valued the family-centred, ecological, and relationship-based elements of early intervention that currently are recommended.

The Trunk Control Measurement Scale: reliability and discriminative validity in children and young people with neuromotor disorders.

AIM: This study investigated the intra- and interrater reliability of the Trunk Control Measurement Scale (TCMS) German version, with its subscores, in children with neuromotor disorders. Further, the discriminative validity of the TCMS was assessed by comparing the TCMS scores with the Functional Independence Measure for children. METHOD: Bland-Altman analyses and intraclass correlation coefficients were applied to investigate reliability. The discriminative ability of the TCMS was evaluated with receiver operating characteristics. RESULTS: Ninety children (mean age 11y 5mo; range 5y-18y 11mo) participated for the reliability, and 50 for the discriminative validity study. The reliability proved to be excellent (intrarater: bias=0.57 points, 95% confidence interval [CI] -3.71 to 4.85; interrater: bias=-0.31 points, 95% CI -5.77 to 5.10). A change in the TCMS total score of six points (10%) can be considered a true change. The TCMS subscores appeared to be clinically relevant because children with less than around 80% of the static balance score, less than 55% of the dynamic reaching score, or less than around 35% of the selective movement control score needed support for daily life activities. INTERPRETATION: The TCMS is a reliable and clinically relevant assessment for children aged 5 years and older with different neurological impairments.

Construct validity and reliability of the Selective Control Assessment of the Lower Extremity in children with cerebral palsy.

AIM: Assessing impaired selective voluntary movement control in children with cerebral palsy (CP) has gained increasing interest. We investigated construct validity and intra- and interrater reliability of the Selective Control Assessment of the Lower Extremity (SCALE). METHOD: Thirty-nine children (21 males, 18 females) with spastic CP, mean age 12 years 6 months [range 6y 11mo-19y 9mo], Gross Motor Function Classification System (GMFCS) levels I to IV, participated. Differences in SCALE scores were determined on joint levels and between patients categorized according to their limb distribution and GMFCS levels. SCALE scores were correlated with the Fugl-Meyer Assessment, Manual Muscle Test, and Modified Ashworth Scale. To determine reliability, the SCALE was applied once and recorded on video. RESULTS: SCALE scores differed significantly between the less and more affected leg (p<0.001) and between most leg joints. Total SCALE scores differed significantly between GMFCS levels I and II. Correlations with Fugl-Meyer Assessment, Manual Muscle Test, and Modified Ashworth Scale were 0.88, 0.88, and -0.55 respectively. Intraclass correlation coefficients were all above 0.9, with the minimal detectable change below 2 points. INTERPRETATION: The SCALE appears to be a valid and reliable tool to assess selective voluntary movement control of the legs in children with spastic CP.

A systematic review of early motor interventions for infants with congenital heart disease and open-heart surgery.

BACKGROUND: Motor development delay is the first neurodevelopmental impairment that becomes apparent in infants with congenital heart disease (CHD). Early interventions have addressed high-risk groups like infants born preterm, but little is known about interventions to improve motor outcome in CHD infants at risk of motor delay. The purpose of this review was to systematically review the literature on type and effect of motor intervention applied during the first year of life in infants with CHD following open-heart surgery. METHODS: Scoping searches were performed in May 2020 and April 2023 via MEDLINE, Embase, CINAHL, Cochrane, PsycINFO, PEDro, and Scopus. The review included studies published in English from 2015 to 2022. Primary outcome was infants' motor development measured by standardized and non-standardized motor assessments, and if available, infants' language and cognitive development, and any parental quality-of-life assessments as secondary outcomes. The studies' quality was evaluated with a modified Newcastle-Ottawa scale. RESULTS: Four papers with low to high methodological quality met inclusion criteria. All studies investigated the influence of early physiotherapy. Four studies involved parents, and three studies used standardized tools to assess motor outcomes. No conclusion can be drawn about any positive effect of early motor interventions. CONCLUSIONS: Early motor intervention in CHD infants may improve motor development; however, the few existing studies do not provide clear evidence. Thus, more prospective early intervention studies are needed. TRIAL REGISTRATION: PROSPERO CRD42020200981.

A family-tailored early motor intervention (EMI-Heart) for infants with complex congenital heart disease: study protocol for a feasibility RCT.

BACKGROUND: Children with congenital heart disease (CHD) undergoing open-heart surgery are at risk for developmental impairments with motor delay manifesting first and contributing to parental concerns. Only a few interventional studies aim to improve neuromotor development in infants with CHD with inconclusive results. We thus developed a family-tailored early motor intervention (EMI-Heart), which aims to promote motor development and family well-being in the first year of life after open-heart surgery. The primary aim described in this protocol is to evaluate feasibility of EMI-Heart. The secondary aim is to describe the difference between the intervention and control group in motor outcomes and family well-being at baseline, post-treatment, and follow-up. METHODS: This prospective, parallel single-center feasibility randomized controlled trial (RCT) will compare EMI-Heart with standard of care in infants with complex CHD. Sixteen infants and their families, randomly allocated to EMI-Heart or the control group, will participate within the first 5 months of life. Infants assigned to EMI-Heart will receive early motor intervention for 3 months. The intervention's key is to promote infants' postural control to enhance motor development and partnering with parents to encourage family well-being. Feasibility outcomes will be (a) clinical recruitment rate and percentage of families completing EMI-Heart, (b) average duration and number of sessions, and (c) acceptability of EMI-Heart using a parental questionnaire post-treatment, and descriptive acceptability of EMI-Heart to the pediatric physiotherapist. Secondary outcomes of the intervention and control group will be infants' motor outcomes and questionnaires assessing family well-being at 3-5 months (baseline), at 6-8 months (post-treatment), and at 12 months of age (follow-up). We will evaluate feasibility using descriptive statistics. Non-parametric statistical analysis of secondary outcomes will assess differences between the groups at baseline, post-treatment, and follow-up. DISCUSSION: This feasibility RCT will provide information about a newly developed family-tailored early motor intervention in infants with complex CHD. The RCT design will provide a foundation for a future large-scale interventional trial for infants with CHD after open-heart surgery. TRIAL REGISTRATION: This study protocol (version 1.3, 01.02.2022) was approved by the Cantonal Ethics Commission Zurich (BASEC-Nr. 2019-01,787) and is registered by Clinicaltrials.gov (NCTT04666857).

Influence of trunk control and lower extremity impairments on gait capacity in children with cerebral palsy.

PURPOSE: We investigated the combined impact of trunk control and lower extremities impairments on predicting gait capacity in children with cerebral palsy (CP) and evaluated relationships between trunk control and lower extremities impairments. METHODS: Data of 52 children with CP [29 boys, mean age 11 years 9 months (±4 years 6 months)] were included in this observational study. Gait capacity was measured by the "modified Time Up and Go test". Experienced therapists performed the "Modified Ashworth Scale", "Manual Muscle Test", the "Selective Control Assessment of the Lower Extremity", and the "Trunk Control Measurement Scale". We calculated Spearman correlations coefficients (ρ) and performed regression analyses. RESULTS: Trunk control was the strongest predictor (ß = -0.624, p < 0.001) when explaining the variance of gait capacity and remained in the model together with spasticity (R2 = 0.67). Muscle strength and selectivity correlated moderately to strongly with the trunk control and gait capacity (-0.68 ≤ ρ ≤ -0.78), but correlations for the spasticity were low (ρ<-0.3). CONCLUSIONS: The interconnection between trunk control, leg muscle strength and selectivity for gait capacity in children with CP was shown. It indicates the significance of these impairments in gait assessment and, potentially, rehabilitation. Implications for Rehabilitation Trunk control was the strongest predictor for gait capacity in a regression model with lower extremity spasticity, muscle strength and selectivity and age as independent variables. Lower extremity muscle strength, selectivity, and trunk control explained a similar amount of gait capacity variance which is higher than that explained by lower extremity spasticity. Lower extremity muscle strength and selectivity correlated strongly with trunk control. Therefore, we cautiously suggest that a combined trunk control and lower extremity training might be promising for improving gait capacity in children with CP (Gross Motor Function Classification System level I-III), which needed to be tested in future intervention-studies.

Translation and construct validity of the Trunk Control Measurement Scale in children and youths with brain lesions.

Trunk control is essential for the performance of everyday tasks. Children with neurological impairments such as cerebral palsy (CP) or acquired brain injury (ABI) commonly show impaired trunk control, which leads to restriction in functional activities. The aim of this study was to provide construct validity of the German version of the Trunk Control Measurement Scale (TCMS). We investigated convergent and discriminant construct validity by comparing the TCMS with the Gross Motor Function Classification System (GMFCS) and the modified Timed up and Go (mTUG). Several TCMS items were validated with force plate measurements. The centre of pressure (COP) parameters included the standard deviation of amplitude, the COP displacement and the area. Fifty-two children with CP and ten children with ABI (mean age 10.9 years 4.9 months, range 5-18 years, GMFCS levels I-IV) participated. Spearman rank correlation coefficients calculated between the TCMS and the GMFCS and mTUG amounted to -0.75 and -0.42, respectively. Validating TCMS items with COP parameters was difficult. Nevertheless, the results support the validity of the TCMS in children with brain lesions. This study provides paediatric therapists working in German speaking countries with a valid tool to assess impaired trunk control in these children. Although originally designed for children with CP, our results show that the TCMS may also be applicable to children with ABI, but more research is needed on a larger population.