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Background: While constraint‐induced movement therapy is strongly recommended as an intervention for infants with unilateral cerebral palsy, the optimal dosage remains undefined. This systematic review aims to identify the most effective level of intensity of constraint‐induced movement therapy to enhance manual function in infants at high risk of asymmetric brain lesions or unilateral cerebral palsy diagnosis. Methods: This systematic review with meta‐analysis encompassed a comprehensive search across four electronic databases to identify articles that met the following criteria: randomised controlled trials, children aged 0–6 with at high risk or with unilateral cerebral palsy, and treatment involving constraint‐induced movement therapy for upper limb function. Studies with similar outcomes were pooled by calculating the standardised mean difference score for each subgroup, and subgroups were stratified every 30 h of total intervention dosage (30–60, 61–90, >90 h). Risk of bias was assessed with Cochrane Collaboration's tool. Results: Seventeen studies were included. Meta‐analyses revealed significant differences among subgroups. The 30–60 h subgroup showed a weak effect for spontaneous use of the affected upper limb during bimanual performance, grasp function, and parents' perception of how often children use their affected upper limb. Additionally, this subgroup demonstrated a moderate effect for the parents' perception of how effectively children use their affected upper limb. Conclusions: Using a dosage ranging from 30 to 60 h when applying a constraint‐induced movement therapy protocol holds promise as the most age‐appropriate and cost‐effectiveness approach for improving upper limb functional outcomes and parent's perception. [ABSTRACT FROM AUTHOR]

Background: Assessing patient experiences is essential to provide high quality health‐care. The objectives of this study were to examine (1) child‐ and parent‐reported information status before magnetic resonance imaging (MRI), (2) experiences during an MRI and (3) needs and suggestions for improvement. Methods: Children (≥8 years) and parents answered questionnaires (before and after planned MRI examination) covering mental condition, information status/needs, preparation for MRI, and potential stressors. Before MRI n = 132 accompanying parents and n = 91 children provided data (after MRI: n = 93 parents; n = 71 children). The mean age of the children undergoing MRI was 10.5 years (SD = 4.9). Children had on average seven previous MRIs before our survey (Range: 1–33). Twenty‐three percent of the children were to be sedated during the examination. Results: Parents and children reported low to medium levels of burden, high knowledge and high information status. For the children, most stressful factors during the MRI were boredom and noise. Main information resources were the radiologists or self‐searches. Parents of children with their first MRI reported higher anxiety levels in their children and stated a worse information status (main information source: self‐searches/internet). Parents reported needs regarding organization of the MRI (e.g., reduction of waiting times), age‐appropriate information and communication during the MRI. Children wished to visit the MRI room prior the examination (44%) and to get more information (44%). Children suggested improvements such as better sound quality of films/music, more transparency about the procedure, being in contact with a parent and shorter examinations. Conclusion: Results suggest that preparation, information provision and care is perceived positively by families. Needs and suggestions for improvement were, for example, higher transparency of procedures, better communication and reduction of stress. Findings indicate that preparation in routine‐care should follow an individualized child‐focused approach, should focus on families without previous MRIs and should address children with high anxiety levels. [ABSTRACT FROM AUTHOR]

Background: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age‐related and contextual information is rare. Objective: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5–11) and adolescents (age: 12–17) with ASD in Switzerland. Method: A cross‐sectional design used the German version of the Participation and Environment Measure‐Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. Results: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. Conclusions: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD. [ABSTRACT FROM AUTHOR]

Background: Parents report both positive and negative experiences associated with raising a child with a physical disability. However, distinctive factors may affect children and families differently. Aims: Using a biopsychosocial approach, the current study expands on the existing literature on the general impact of raising a child with a disability. Methods: Participants were 98 parents of children/youth with a physical disability. Parents reported on child's level of physical disability, the impact of the disability on the family (financial, social, personal strain and mastery) and their general health. Data were analysed to examine how different biopsychosocial factors are associated with raising a child with a physical disability. Results: Parents reported that child's disability had a higher social impact, compared with the financial and personal burden, as well as compared with their sense of competency and mastery. Child's level of disability was associated with financial burden, whereas parental emotional distress was associated with parents' personal and social burden, with the latter also associated with parent's religiosity. Total impact was associated with parental emotional distress and educational level. Conclusions: Altogether, parental characteristics, but not child's characteristics, were associated with greater caregiver burden. Furthermore, the social impact a child's physical disability has on the family exceeded other sources of burden within the family. Providing parents social and emotional support, tailored to their unique biopsychosocial needs, may mitigate burden and distress, and increase sense of competency among families of children with a physical disability. [ABSTRACT FROM AUTHOR]

Abstract: Background: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services. Methods: We recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3‐year longitudinal study. Reported needs were measured with an 11‐item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses. Results: A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services. Conclusions: Reporting of unmet needs can indicate where service development is required, and we have shown that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination. [ABSTRACT FROM AUTHOR]

Abstract: Background: Advances in medical knowledge have contributed to the increase in the number of children living with some form of long‐term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow‐on consequences to well‐being. Methods: Employing a narrative, meta‐synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. Results: The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of “doing it all.” And third, the above challenges lead to additional impacts on parental quality of life. Conclusions: This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well‐being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. [ABSTRACT FROM AUTHOR]

Abstract: Background: Sleep has a significant influence on children's development. The objective of this study was to investigate Head Start children's sleeping patterns and the impact on cognitive and behavioural outcomes. Methods: Using the 2009 cohort of the Head Start Family and Child Experiences Survey (N = 2,868), information on sleeping patterns was assessed through parent interviews. Cognitive outcomes were assessed using direct assessments (Peabody Picture Vocabulary Test‐IV, the Expressive One‐Word Picture Vocabulary Test, and Subtests of the Woodcock–Johnson III) in addition to teacher report. Behavioural outcomes were assessed through parent and teacher reports. A multiple regression analysis was performed for each outcome variable. Results: Descriptive findings showed that 89% of children had a regular bedtime at least 4 days per week and that the average amount of sleep per night was 10.41 hr. White mothers were more likely than other racial groups to adhere to a consistent bedtime, and maternal employment predicted less hour of sleep per night. Multiple regression analyses revealed that disrupted sleep had a negative influence on cognitive outcomes, especially in areas of mathematical problem solving, receptive language, teacher‐reported literacy behaviours, and approaches to learning. Disrupted sleep was associated with the risk of misbehaviour by increasing teacher and parent ratings on aggressive behaviours, hyperactivity, and withdrawing in addition to decreased scores on overall social skills. Having an inconsistent bedtime negatively predicted expressive vocabulary and teacher‐reported literacy behaviours. Conclusions: The findings of this study support the influential role of sleep on children's development. Sleeping through the night and having a consistent bedtime were found to be predictive of many areas of cognitive and behavioural development. Head Start staff can provide the supports to increase parental knowledge on appropriate child sleep practices. [ABSTRACT FROM AUTHOR]

Aim To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. Background Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. Results Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC ( P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. Conclusion The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices. [ABSTRACT FROM AUTHOR]

Background Considering that asthma management is a family affair - with specific challenges in adolescence - a better understanding of both adolescent and parental perspectives on asthma and its treatment are needed as these constructs may substantially account for variation in illness-related behaviour and functioning. The present study aimed to (1) explore adolescents' and caregivers' perceptions about asthma and asthma management and (2) examine congruence and dissimilarities within the adolescent-caregiver dyads. Methods Data collection was conducted separately for adolescents and caregivers using a focus group approach for the adolescents and telephone interviews for parental data collection. In total, dyadic data from n = 15 adolescent patients with asthma (aged 11-17 years, M= 14.9) and their mothers (aged 37-55 years, M= 46.3) were considered in the study. The interviews were transcribed verbatim and analysed in a dyad-focused multistep qualitative content analysis procedure using the software. Results The results demonstrated high complexity in the perceptions among adolescents and mothers and reflected 113 specific themes that could be assigned to four main topics: asthma beliefs, representations of asthma treatment, perceptions about individual asthma management and perceptions about family asthma management. Dyadic analyses revealed congruence in the adolescent-caregiver dyads in most of the themes. However, we also found issues where divergent perceptions became evident including, for example, perceptions of asthma's general impact on adolescents' life or the question of who takes the main responsibility in asthma management. Conclusions Adolescents' and caregivers' perceptions were found to reflect a great variety of beliefs regarding the adolescents' illness and illness-related behaviour on both the individual and the family level. The study adds to the illness perceptions literature by providing a systemic perspective that was rather rarely presented in prior research. [ABSTRACT FROM AUTHOR]