Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review.

BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

Understanding neurodevelopmental trajectories and behavioral profiles in SCN1A-related epilepsy syndromes.

BACKGROUND: A pathogenic variant in SCN1A can result in a spectrum of phenotypes, including Dravet syndrome (DS) and genetic epilepsy with febrile seizures plus (GEFS + ) syndrome. Dravet syndrome (DS) is associated with refractory seizures, developmental delay, intellectual disability (ID), motor impairment, and challenging behavior(1,2). GEFS + is a less severe phenotype in which cognition is often normal and seizures are less severe. Challenging behavior largely affects quality of life of patients and their families. This study describes the profile and course of the behavioral phenotype in patients with SCN1A-related epilepsy syndromes, explores correlations between behavioral difficulties and potential risk factors. METHODS: Data were collected from questionnaires, medical records, and semi-structured interviews. Behavior difficulties were measured using the Adult/Child Behavior Checklist (C/ABCL) and Adult self-report (ASR). Other questionnaires included the Pediatric Quality of Life Inventory (PedsQL), the Functional Mobility Scale (FMS) and the Sleep Behavior Questionnaire by Simonds & Parraga (SQ-SP). To determine differences in behavioral difficulties longitudinally, paired T-tests were used. Pearson correlation and Spearman rank test were used in correlation analyses and multivariable regression analyses were employed to identify potential risk factors. RESULTS: A cohort of 147 participants, including 107 participants with DS and 40 with genetic epilepsy with febrile seizures plus (GEFS + ), was evaluated. Forty-six DS participants (43.0 %) and three GEFS + participants (7.5 %) showed behavioral problems in the clinical range on the A/CBCL total problems scale. The behavioral profile in DS exists out of withdrawn behavior, aggressive behavior, and attention problems. In DS patients, sleep disturbances (ß = 1.15, p < 0.001) and a lower age (ß = -0.21, p = 0.001) were significantly associated with behavioral difficulties. Between 2015 and 2022, behavioral difficulties significantly decreased with age (t = -2.24, CI = -6.10 - -0.15, p = 0.04) in DS participants aging from adolescence into adulthood. A decrease in intellectual functioning (ß = 3.37, p = 0.02) and using less antiseizure medications in 2022 than in 2015, (ß = -1.96, p = 0.04), were identified as possible risk factors for developing (more) behavioral difficulties. CONCLUSIONS: These findings suggest that, in addition to epilepsy, behavioral difficulties are a core feature of the DS phenotype. Behavioral problems require personalized management and treatment strategies. Further research is needed to identify effective interventions.

Parental Beliefs About the Motor Development of Dutch Infants Born Very Preterm: A Cohort Study.

PURPOSE: To explore the influence of preterm birth on parental beliefs about gross motor development and parents' supportive role in infants' motor development. METHODS: Prospective cohort study: Parents of infants born very preterm (VPT) (gestation ≤32 weeks, birth weight <1500 g, without perinatal complications) and parents of healthy infants born full-term (FT) completed the Parental Beliefs on Motor Development questionnaire. RESULTS: Questionnaires from 37 parents of infants born VPT, aged 3.5 to 7.5 months (corrected), and 110 parents of infants born FT, aged 3.5 months, were analyzed. Parents of infants born VPT believed stimulating motor development to be more important than parents of infants born FT (F = 5.22; P = .024; ηp2 = 0.035). Most parents of infants born VPT (82.4%) and FT (85.2%) acknowledged their role in supporting motor development. More parents of infants born VPT (41.2% vs 12.0%) believed they should follow their infant's natural developmental pace. CONCLUSION: Knowledge of parental beliefs and parents' supporting role in motor development is relevant for tailoring pediatric physiotherapists' interventions with families.

Challenging behavior in children and adolescents with Dravet syndrome: Exploring the lived experiences of parents.

BACKGROUND: Dravet syndrome (DS) is a monogenic syndrome associated with SCN1A mutations in the majority of patients and characterized by devastating epilepsy, that may be life-threatening. Aside from refractory seizures, core symptoms of DS include behavioral difficulties, developmental delay, cognitive impairment, and motor dysfunction. Previous DS research has mainly focused on epileptic seizures and pharmacological management and less on behavioral difficulties. This study aims to explore the lived experience of parents supporting a child with DS, with a focus on behavioral aspects. METHODS: We performed a qualitative study using focus groups and following the consolidated criteria for reporting qualitative research (COREQ) guidelines. We organized three focus groups with parents of children and adults with DS and used a pre-defined topic list of open questions, similar for each focus group to ensure comparability. The focus groups were video recorded, transcribed, and anonymized. Data were analyzed using an iterative coding process where codes were sorted into themes. Differences in coding among the researchers were discussed until a consensus was reached. RESULTS: In total, twenty parents (mothers only) participated in the study. The age of children with DS ranged between 3 to 22 years with a mean age of 11.8 years. A range of behavioral difficulties emerged from the thematic analysis. Overall, the most commonly mentioned behavioral difficulties were aggression, dangerous behavior, impulsivity, hyperactivity, routinized and compulsive habits. Our results showed different behavior per age group, with more externalizing behaviors such as aggression and impulsivity in children aged 3-13 years; and more internalizing behavior such as routinized and compulsive habits in adolescents and young adults (14-22 years). This results in a different kind of support these families need and should be acknowledged when in consult with a healthcare professional. Parents reported that challenging behavior was a source of stress and impacted negatively on their family's quality of life. Parents reported feeling alone in their search for solutions, and many explored options outside the traditional medical context. CONCLUSION: Our results suggest that the challenging behavior associated with DS leads to a huge burden of care. Healthcare professionals working with DS patients may need to develop shared decision-making strategies that take into account challenging behavior.

Modeling a gross motor curve of typically developing Dutch infants from 3.5 to 15.5 months based on the Alberta Infant Motor Scale.

BACKGROUND: Interindividual variability in gross motor development of infants is substantial and challenges the interpretation of motor assessments. Longitudinal research can provide insight into variability in individual gross motor trajectories. PURPOSE: To model a gross motor growth curve of healthy term-born infants from 3.5 to 15.5 months with the Alberta Infant Motor Scale (AIMS) and to explore groups of infants with different patterns of development. METHODS: A prospective longitudinal study including six assessments with the AIMS. A Linear Mixed Model analysis (LMM) was applied to model motor growth, controlled for covariates. Cluster analysis was used to explore groups with different pathways. Growth curves for the subgroups were modelled and differences in the covariates between the groups were described and tested. RESULTS: In total, data of 103 infants was included in the LMM which showed that a cubic function (F(1,571) = 89.68, p < 0.001) fitted the data best. None of the covariates remained in the model. Cluster analysis delineated three clinically relevant groups: 1) Early developers (32%), 2) Gradual developers (46%), and 3) Late bloomers (22%). Significant differences in covariates between the groups were found for birth order, maternal education and maternal employment. CONCLUSION: The current study contributes to knowledge about gross motor trajectories of healthy term born infants. Cluster analysis identified three groups with different gross motor trajectories. The motor growth curve provides a starting point for future research on motor trajectories of infants at risk and can contribute to accurate screening.

Parents' experiences of VOICE: A novel support programme in the NICU.

BACKGROUND: Admission of an infant to a neonatal intensive care unit (NICU) is often a stressful experience for parents and can be associated with feelings of inadequacy to fulfil the desirable parental role. The values, opportunities, integration, control, and evaluation (VOICE) programme was developed to engage parents in care, to decrease stress, and to increase empowerment. AIM: To explore the experiences of parents regarding involvement in the VOICE programme during admission of their infant to the NICU. DESIGN: The VOICE programme includes at least five personal structured meetings between parents, nurses, and other health care professionals throughout the pathway from birth, NICU, and follow up. A qualitative design was adopted using semi-structured interviews. Interviews with 13 parents of 11 infants born at <27 weeks' gestational age were conducted: nine mothers and two couples of father and mother. Thematic analysis was deployed. RESULTS: The findings have been described in one overarching theme: "parental empowerment." Parents felt strengthened and were empowered in the development of their role as primary caretaker by the VOICE programme. The parental empowerment theme emerged from four related interpretive themes that were derived: (a) involvement in care, (b) personalized information and communication, (c) transition to a parental role, and (d) emotional support. CONCLUSION: The VOICE programme can be a structured approach used to implement family support in a NICU to empower parents to become a partner in the care of their infant and feel confident. RELEVANCE TO CLINICAL PRACTICE: This study encourages health care professionals to provide parental support through a structured intervention programme, which contributes to the empowerment of parents in the NICU and encouraged them to participate in care and decision-making.

Factors associated with gross motor development from birth to independent walking: A systematic review of longitudinal research.

AIM: The aim of this study is to gain more insight into child and environmental factors that influence gross motor development (GMD) of healthy infants from birth until reaching the milestone of independent walking, based on longitudinal research. BACKGROUND: A systematic search was conducted using Scopus, PsycINFO, MEDLINE and CINAHL to identify studies from inception to February 2020. Studies that investigated the association between child or environmental factors and infant GMD using longitudinal measurements of infant GMD were eligible. Two independent reviewers extracted key information and assessed risk of bias of the selected studies, using the Quality in Prognostic Studies tool (QUIPS). Strength of evidence (strong, moderate, limited, conflicting and no evidence) for the factors identified was described according to a previously established classification. RESULTS: In 36 studies, six children and 11 environmental factors were identified. Five studies were categorized as having low risk of bias. Strong evidence was found for the association between birthweight and GMD in healthy full-term and preterm infants. Moderate evidence was found for associations between gestational age and GMD, and sleeping position and GMD. There was conflicting evidence for associations between twinning and GMD, and breastfeeding and GMD. No evidence was found for an association between maternal postpartum depression and GMD. Evidence for the association of other factors with GMD was classified as 'limited' because each of these factors was examined in only one longitudinal study. CONCLUSION: Infant GMD appears associated with two child factors (birthweight and gestational age) and one environmental factor (sleeping position). For the other factors identified in this review, insufficient evidence for an association with GMD was found. For those factors that were examined in only one longitudinal study, and are therefore classified as having limited evidence, more research would be needed to reach a conclusion.

Non-right-handedness in children born extremely preterm: Relation to early neuroimaging and long-term neurodevelopment.

OBJECTIVE: This study aimed to define the prevalence and predictors of non-right-handedness and its link to long-term neurodevelopmental outcome and early neuroimaging in a cohort of children born extremely preterm (<28 weeks gestation). METHODS: 179 children born extremely preterm admitted to the Neonatal Intensive Care Unit of our tertiary centre from 2006-2013 were included in a prospective longitudinal cohort study. Collected data included perinatal data, demographic characteristics, neurodevelopmental outcome measured by the Bayley Scales of Infant and Toddler Development at 2 years and the Movement Assessment Battery for Children at 5 years, and handedness measured at school age (4-8 years). Magnetic resonance imaging performed at term-equivalent age was used to study overt brain injury. Diffusion tensor imaging scans were analysed using tract-based spatial statistics to assess white matter microstructure in relation to handedness and neurodevelopmental outcome. RESULTS: The prevalence of non-right-handedness in our cohort was 22.9%, compared to 12% in the general population. Weaker fine motor skills at 2 years and paternal non-right-handedness were significantly associated with non-right-handedness. Both overt brain injury and fractional anisotropy of white matter structures on diffusion tensor images were not related to handedness. Fractional anisotropy measurements showed significant associations with neurodevelopmental outcome. CONCLUSIONS: Our data show that non-right-handedness in children born extremely preterm occurs almost twice as frequently as in the general population. In the studied population, non-right-handedness is associated with weaker fine motor skills and paternal non-right-handedness, but not with overt brain injury or microstructural brain development on early magnetic resonance imaging.

Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician.

BACKGROUND: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. METHODS: In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. RESULTS: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. CONCLUSION: Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.

The long-term effect of perinatal asphyxia on hippocampal volumes.

BACKGROUND: Hypoxic-ischemic encephalopathy (HIE) in term-born infants can lead to memory problems. The hippocampus is important for long-term episodic memory. The primary aim was to investigate the effect of HIE on hippocampal volumes in 9- to 10-year-old children. The secondary aim was to investigate the association between hippocampal volumes and previously found impaired memory and cognitive functions in the current cohort. METHODS: In total 26 children with mild HIE, 26 with moderate HIE, and 37 controls were included. The intelligence quotient (IQ) and memory were tested. A 3D-volumetric MRI was obtained. Brain segmentation was performed for hippocampal volumes and intracranial volume. The differences in hippocampal volumes, memory, and IQ between the groups were determined. Multivariable linear regression analyses were performed, including hippocampal volume as a percentage of intracranial volume as a dependent variable. RESULTS: Smaller hippocampal volumes were found in moderate HIE (p < 0.001), with a trend toward smaller volumes in mild HIE, compared to controls. In multivariable linear regression analysis, hippocampal volume as a percentage of intracranial volume was significantly associated with long-term visuospatial memory. CONCLUSION: Children with moderate HIE had smaller hippocampal volumes than controls, with a trend toward smaller volumes following mild HIE. Reduced hippocampal volumes were associated with poorer long-term visuospatial memory.

Behavior problems and health-related quality of life in Dravet syndrome.

OBJECTIVE: Behavior problems in Dravet syndrome (DS) are common and can impact the lives of patients tremendously. The current study aimed to give more insight into (1) the prevalence of a wide range of specific behavior difficulties and aspects of health-related quality of life (HRQoL) in patients with DS compared with the general population (gp) and patients with epilepsy without DS, (2) the relations between these behavior problems and different aspects of HRQoL, and (3) the associations between seizure frequency, cognitive impairment (CI), behavior problems, and HRQoL, based on a conceptual model. METHODS: One hundred and sixteen patients (aged between 2 and 67 years), affected by SCN1A-related seizures, were included in the study. Eighty-five were patients with DS, 31 were patients with epilepsy without DS. Behavior problems were measured using the Child/Adult Behavior Checklist (C/ABCL), HRQoL was measured using the Pediatric Quality of Life Inventory (PedsQL) Measurement Model. Other characteristics were obtained by clinical assessments, medical records, and semi-structured telephone interviews with parents. Comparisons between patients with DS, patients without DS, and the gp were calculated by the exact goodness of fit χ2 analyses, relations between subscales were analyzed using Pearson's correlations, and the conceptual model was tested in a path analysis. RESULTS: (1) Patients with DS show significantly more behavior problems compared with the gp and patients with epilepsy without DS. A total of 56.5% of patients with DS scored in the borderline and clinical ranges for total behavior problems. Problems with attention were most prevalent; 62.3% of patients with DS scored in the borderline and clinical ranges. Health-related quality of life was significantly lower for patients with DS compared with the gp and patients without DS. Physical and social functioning scores were especially low and decreased even more in the older age categories. (2) Problems with attention, aggression, and withdrawn behavior were most related to social functioning. Somatic problems and anxiety/depression were most related to emotional functioning. (3) Cognitive impairment and behavior problems were both independent predictors of poorer HRQoL in patients with DS, with behavior problems being the strongest predictor. Seizure frequency was only indirectly related to HRQoL, mediated by cognitive impairment. IMPLICATIONS: The high prevalence of behavior problems in DS and the significant impact on quality of life (QoL), independent of epilepsy-related factors, emphasize the need for active management and treatment of these problems and should be considered as part of the management plan.

Outcome of Preterm Infants With Postnatal Cytomegalovirus Infection.

OBJECTIVES: To assess whether preterm infants with postnatal cytomegalovirus infection develop neurologic sequelae in early childhood. METHODS: Infants <32 weeks' gestation were prospectively screened for cytomegalovirus (CMV) at term-equivalent age. Neurodevelopment was compared between CMV-positive and CMV-negative infants by using the Griffiths Mental Development Scales (GMDS) at 16 months' corrected age (CA); the Bayley Scales of Infant and Toddler Development, Third Edition or the GMDS at 24 to 30 months' CA; and the Wechsler Preschool and Primary Scale of Intelligence, Third Edition and Movement Assessment Battery for Children, Second Edition at 6 years of age. At 6 years old, hearing was assessed in CMV-positive children. RESULTS: Neurodevelopment was assessed in 356 infants at 16 months' CA, of whom 49 (14%) were infected and 307 (86%) were noninfected. Infected infants performed significantly better on the GMDS locomotor scale. There were no differences at 24 to 30 months' CA on the Bayley Scales of Infant and Toddler Development, Third Edition or GMDS. At 6 years of age, infected children scored lower on the Wechsler Preschool and Primary Scale of Intelligence, Third Edition, but mean scores were within normal range, reaching significance only in verbal IQ (96 [SD 17] vs 103 [SD 15] points; P = .046). Multiple regression indicated no impact of CMV status but significant influence of maternal education and ethnicity on verbal IQ. No significant differences in motor development were found and none of the infected children developed sensorineural hearing loss. CONCLUSIONS: In this cohort study, postnatal cytomegalovirus infection in preterm children did not have an adverse effect on neurodevelopment within the first 6 years of life.

Exploring predictors of change in behavioral problems over a 1-year period in preterm born preschoolers.

OBJECTIVE: Although predictors of the prevalence of behavioral problems in preterm-born children have been frequently studied, predictors of behavioral change in these children remain unknown. Therefore, in this study we explore predictors of short-term changes in problem behavior in preterm-born preschoolers, an age period characterized by rapid behavioral change. METHOD: Two- to 5-year-old children born with a gestational age <32 weeks and/or birth weight <1500 g were eligible, because of their high risk for behavioral problems. Following screening, 59 children with a t-score ≥60 on either the internal, external or total problem scale of the Child Behavior Checklist were included in the study. Linear mixed modeling was used to investigate predictors of change in behavior over a 1-year period. RESULTS: Higher levels of parenting stress, parent perceived child vulnerability, and parental hostility towards the child and lower educational levels of the mother significantly predicted increases in externalizing behavior. The higher the age of the child, the more internalizing problems decreased. CONCLUSIONS: Parenting stress, parent perceived child vulnerability and parental hostility towards the child were the only modifiable predictors of increases in externalizing behavior, whilst no modifiable predictors of internalizing behavior were found. There may be a reciprocal interaction between stress in parents and child externalizing problems. Furthermore, stress and worries may directly influence parents' reports on behavioral measures, because it could cause them to be concerned by behavior otherwise perceived as normal. Therefore, future interventions for parents of preterm-born children should primarily address parental stress and concerns regarding their child.

The link between motor and cognitive development in children born preterm and/or with low birth weight: A review of current evidence.

The current review focuses on evidence for a link between early motor development and later cognitive skills in children born preterm or with Low Birth Weight (LBW). Studies with term born children consistently show such a link. Motor and cognitive impairments or delays are often seen in children born preterm or with LBW throughout childhood and studies have established a cross-sectional association between the two. However, it is not yet clear if, and if so, how, motor and cognitive skills are longitudinally interrelated in these children. Longitudinal studies with this population including measures of motor development during the first year of life and cognitive measures at later measurement points were included. The 17 studies included usually show a link between level and/or quality of motor development during the first year of life and later cognitive skills in children born preterm and/or with LBW. However, given the small number of studies, and a possible effect of early interaction between motor and cognitive skills affecting this relation, more work is clearly needed.

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community: a qualitative diary study.

BACKGROUND: Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents' own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review. METHODS: A qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework. RESULTS: Analysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents' actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented. CONCLUSIONS: Parents' actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.

Attachment Representation and Sensitivity: The Moderating Role of Posttraumatic Stress Disorder in a Refugee Sample.

It has been hypothesized that adult attachment representations guide caregiving behavior and influence parental sensitivity, and thus affect the child's socio-emotional development. Several studies have shown a link between posttraumatic stress disorder (PTSD) and reduced parental sensitivity, so it is possible that PTSD moderates the relationship between insecure attachment representations and insensitivity. In this study symptoms of PTSD (Harvard Trauma Questionnaire), parental sensitivity (Emotional Availability Scales), and attachment representations (Attachment Script Assessment) were assessed in 53 parents who were asylum seekers or refugees. Results showed that when parents were less able to draw on secure attachment representations, symptoms of PTSD increased the risk of insensitive parenting. These findings suggest that parental sensitivity is affected not just by attachment representations, but by a conjunction of risk factors including symptoms of PTSD and insecure attachment representations. These parents should therefore be supported to establish or confirm secure models of attachment experiences, to facilitate their ability interact sensitively and form a secure relationship with their children.

The effect of an integrated perceived competence and motor intervention in children with developmental coordination disorder.

BACKGROUND AND AIMS: Children with DCD have lower self-perceptions and are less physically active than typically developing children. The aim of this quasi-experimental study was to investigate whether an integrated perceived competence and motor intervention affects DCD children's motor performance, self-perceptions, and physical activity compared with a motor intervention only. METHODS AND PROCEDURES: The intervention group consisted of 20 children and the care-as-usual group consisted of 11 children, all aged 7-10 years. The perceived competence component of the intervention focused primarily on providing positive, specific, and progress feedback to enhance self-perceptions. We assessed children at baseline, after 12 treatment sessions (trial end-point), and at 3-month follow-up. OUTCOMES AND RESULTS: Mixed linear models revealed no differences between the intervention and the care-as-usual group on any of the outcome measures. Children improved their motor performance and increased their perceived athletic competence, global self-esteem, and perceived motor competence after 12 treatment sessions. This improvement was maintained at 3-month follow-up. Motor task values and physical activity remained unchanged for all children. CONCLUSIONS AND IMPLICATIONS: A perceived competence and motor intervention is as effective as care-as-usual in children with DCD. Future research should focus on improving physical activity in children with DCD. WHAT THIS PAPER ADDS: This is the first study that has investigated the effect of an integrated perceived competence and motor intervention (intervention group) on motor performance, self-perceptions, and physical activity compared with a motor intervention (care-as-usual group) in children with DCD. We made the perceived competence component explicit by providing positive, specific, and progress feedback to enhance children's self-perceptions. Also, this is one of the first studies that has investigated the effect after both 12 treatment sessions (trial end-point) and after 3 months of no intervention (3-month follow-up). We found no differences between the intervention and the care-as-usual group, but children improved their motor performance and increased (most) of their self-perceptions after 12 treatment sessions, while physical activity remained the same. The improvement was still present at the 3-month follow-up. We also benchmarked our results about self-perceptions and physical activity to a group of typically developing children. Self-perceptions in children with DCD had improved to the level of typically developing children after 12 treatment sessions, but their physical activity levels remained significantly lower. This result was the same at the 3-month follow-up, except for perceived athletic competence, which was lower in children with DCD at the 3-month follow-up. In accordance with previous intervention studies that have investigated children with DCD, we found large intra-group variability in the change in motor performance and self-perceptions in children with DCD. We argue that we need to better understand why some children with DCD improve and others do not after a motor intervention.

Does the development of executive functioning in infants born preterm benefit from maternal directiveness?

OBJECTIVE: Problems in early development of executive functioning may underlie the vulnerability and individual variability of infants born preterm for behavioral and learning problems. Parenting behaviors may aggravate or temper this increased risk for dysfunction. This study assessed how maternal parenting behaviors predict individual differences in early development of executive functioning in infants born preterm, and whether this varies with infant temperament, i.e., self-regulation. METHODS: Participants were 76 infants born preterm (≤36weeks' gestation and <2500g birth weight) and their mothers. Maternal sensitive responsiveness and directiveness were observed during a mother-infant interaction situation at 7, 10 and 14months corrected age. At the same ages, executive functioning was measured using the A-not-B task. An infant self-regulation questionnaire (IBQ-R) was completed by mothers at 7months. RESULTS: After controlling for perinatal risk factors, Multivariate Latent Growth Modeling showed that consistently higher levels of maternal directiveness predicted a stronger increase in A-not-B performance, which did not vary with infant self-regulation. No relationship between maternal sensitive responsiveness and development in A-not-B performance in infants born preterm was found. CONCLUSIONS: These results suggest that preterm infants' early executive functioning development in the first year of life may benefit from a more and consistent directive approach by their mothers. These findings have important implications for early intervention programs aimed at facilitating preterm infants' development.

Child-Focused and Context-Focused Behaviors of Physical and Occupational Therapists during Treatment of Young Children with Cerebral Palsy.

AIMS: To (1) describe the child- and context-focused behaviors of physical and occupational therapists, and (2) compare the behaviors of therapists in a standard therapy session with those of therapists trained to deliver child- and context-focused services. METHOD: Videos of 49 therapy sessions provided by 36 therapists were analyzed using the intervention domains of the Paediatric Rehabilitation Observational measure of Fidelity (PROF) to examine the therapeutic behaviors of physical and occupational therapists with young children with cerebral palsy (CP) (24 to 48 months) in a Dutch rehabilitation setting. The PROF ratings of 18 standard therapy sessions were compared with the ratings of 16 child- and 15 context-focused therapy sessions. RESULTS: Therapists who provided standard therapy demonstrated a mix of child- and context-focused behaviors. PROF ratings indicated fewer child- and context-focused behaviors during standard therapy sessions compared with sessions where therapists were instructed to use either child- or context-focused behaviors. CONCLUSIONS: A sample of Dutch physical and occupational therapists of young children with CP demonstrated a mix of child- and context-focused therapy behaviors during standard therapy. Further research is recommended on clinical reasoning and the effect of setting to better understand therapists' use of child- and context-focused behaviors during therapy sessions.

Parents' experiences and needs regarding physical and occupational therapy for their young children with cerebral palsy.

OBJECTIVE: To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting. METHODS: A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews were conducted until informational redundancy was achieved. RESULTS: Three major themes were identified: Information, communication and partnership. A fourth, overarching theme emerged: The process of parent empowerment. Experiences and needs differed between parents and changed over time. CONCLUSION: This study suggests that various themes play a key role in the experiences and needs of parents of young children with CP. The identified themes provide important insights into how and why service providers might change their approach. PRACTICE IMPLICATIONS: Becoming empowered is a dynamic process for parents, in which both parents and service providers play a role. Service providers should continually adapt their role to parents' needs of information, communication and partnership, and they should support and facilitate parents in becoming empowered. For that, service providers should be educated on the process of parent empowerment, on ways to facilitate this process and on the importance of involving and interacting with parents. This allows families of young children with CP to be provided with services that best suit their needs.