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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: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent–child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently. Methods: Fourteen parents were interviewed using semi‐structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision‐making process to undertaking an intensive multi‐disciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes. Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat—if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents. Conclusions: Parenting a tube‐fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support. [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]

Background: Parents and childcare providers play a substantial role in the development of health behaviours among the children they care for. In order to ensure the optimal growth and development of children, communication and family engagement in childcare is critical. Previous studies examining parent or provider perceptions about healthy eating or physical activity have explored these concepts individually and/or have only included only parents or providers. Therefore, the purpose of this study was to compare childcare provider and parent perceptions of communication regarding healthy eating and physical activity as well as use of best practice strategies on family engagement for these topics. Methods: Childcare providers (n = 12) in childcare centres or a family childcare home and a parent (n = 12) of a child they provide care for participated in a semi‐structured interview guided by the Social Ecological Model. Interviews were transcribed verbatim and uploaded to NVivo for data analysis. Data were analysed using a directed content analysis. Three trained qualitative researchers developed a codebook and then compared responses between parents and providers. Results: Similarities in provider and parent responses included agreement on healthy eating; influences on child development; parents being the most influential on children's healthy eating; how they identified physical activity opportunities; and the use of family engagement principles. Differences that arose included parents' roles in promoting children's physical activity; challenges for parents in promoting healthy eating and physical activity; and providers' encouragement of physical activity. Importantly, few parents mentioned providers were top influences on their child's healthy eating or physical activity. Providers also mentioned having difficult conversations with parents was challenging. Conclusions: Future efforts are needed to (1) help parents understand the providers' role in the development of their child's health behaviours and (2) strengthen efforts to engage families in healthy behaviours outside of childcare facilities. [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 Human papillomavirus (HPV) vaccination is recommended for routine administration at ages 11-12 years. However, uptake is lower than for other vaccines that are also routinely recommended for adolescents (MCV4 and Tdap). Understanding parental perceptions of HPV vaccine compared with other vaccines may help to inform strategies to increase uptake. Methods Parents and caregivers ( n = 45) of adolescents ages 10-18 years from a low-income, ethnic minority population participated in a qualitative study. Interviews were transcribed verbatim and coded for emergent themes. Results Many participants perceived the HPV vaccine to be similar to other routine vaccines. Noted similarities included the vaccines' ability to prevent disease, similar methods of administration and belief in health care providers' recommendation. Some parents noted the greater benefit of HPV vaccine in preventing cancer, which was viewed as a serious disease. Parents also noted the different mode of transmission (sexual) for HPV, which evoked mixed opinions. Conclusion Overall, most participants viewed the HPV vaccine in a positive light and similar to other adolescent vaccines with the added benefit of cancer prevention. Strategies that treat all three vaccines equally such as presenting them similarly as a 'bundle' to parents or considering policy initiatives such as school entry requirements might help increase raise coverage for HPV vaccine. [ABSTRACT FROM AUTHOR]

Background This study aimed to evaluate parental perception of neighbourhood environments and safety in association with children's physical activity among primary school children in Klang, Selangor, Malaysia. Methods A total of 250 children (9-12 years of age) and their parents participated in this cross-sectional study. Physical Activity Questionnaire for Older Children and Neighbourhood Environmental Walkability Scale as well as questions on constrained behaviours (avoidance and defensive behaviours) were used to assess the children's physical activity and parental perception of neighbourhood environment and safety, respectively. Results More than one-third (36.0%) of the children were physically inactive compared with only a small percentage (4.8%) who were physically active, with boys achieving higher physical activity levels than girls ( t = 2.564, P = 0.011). For the environmental scale, parents' perception of land-use mix (access) ( r = 0.173, P = 0.006), traffic hazards ( r = −0.152, P = 0.016) and defensive behaviour ( r = −0.024, P = 0.143) correlated significantly with children's physical activity. In multiple linear regression analysis, child's gender ( β = −0.226; P = 0.003), parent's education ( β = 0.140; P = 0.001), household income ( β = 0.151; P = 0.024), land-use mix (access) ( β = 0.134; P = 0.011) and defensive behaviour ( β = −0.017; P = 0.038) were significantly associated with physical activity in children ( R = 0.349, F = 6.760; P < 0.001), contributing 12.2% of the variances in physical activity of the children. Conclusion Results highlight the links between parental perception of neighbourhood environments, safety and constrained behaviours with their children's participation in active play. Interventions aimed to increase actual and perceived safety and reduce perceptions of risk by parents in safe neighbourhoods can be targeted to increase children's physical activity in their local neighbourhoods. [ABSTRACT FROM AUTHOR]

Background Few children with obesity who are referred for weight management end up enroled in treatment. Factors enabling enrolment are poorly understood. Our purpose was to explore reasons for and facilitators of enrolment in paediatric weight management from the parental perspective. Methods Semi-structured interviews were conducted with parents of 10- to 17-year-olds who were referred to one of four Canadian weight management clinics and enroled in treatment. Interviews were audio-recorded and transcribed verbatim. Manifest/inductive content analysis was used to analyse the data, which included the frequency with which parents referred to reasons for and facilitators of enrolment. Results In total, 65 parents were interviewed. Most had a child with a BMI ≥95th percentile ( n = 59; 91%), were mothers ( n = 55; 85%) and had completed some post-secondary education ( n = 43; 66%). Reasons for enrolment were related to concerns about the child, recommended care and expected benefits. Most common reasons included weight concern, weight loss expectation, lifestyle improvement, health concern and need for external support. Facilitators concerned the referral initiator, treatment motivation and barrier control. Most common facilitators included the absence of major barriers, parental control over the decision to enrol, referring physicians stressing the need for specialized care and parents' ability to overcome enrolment challenges. Conclusions Healthcare providers might optimize enrolment in paediatric weight management by being proactive in referring families, discussing the advantages of the recommended care to meet treatment expectations and providing support to overcome enrolment barriers. [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]

Background Parents are increasingly recognized as important partners in children's health care. Despite their involvement in care, parental experiences of their child's hospitalization have received little research attention. In this study we explored parents' perceptions of what they found difficult, what they would like to be different and what they found to be helpful during their infant's hospitalization and surgery for the treatment of congenital heart disease. Methods Structured interviews were conducted with 154 parents (91 mothers, 63 fathers) whose infant underwent cardiac surgery (at <3 months of age) 1 month post discharge from hospital. Thematic and frequency analyses were performed. Results Parents reported a range of difficulties from dealing with their baby's unfolding illness, surgery and recovery to the structural and systemic issues associated with the broader context of their experiences. In an effort to be near their baby, parents struggled to obtain the necessities for daily living at the hospital and negotiate transitions between their hospital and home lives throughout the admission. Domains parents identified for change included the availability of facilities and resources and the quantity and quality of information and emotional support. Parents reported relationships with hospital staff as the most common source of support during this challenging time. Conclusions Opportunities to improve parents' experiences when their infant is in hospital exist at an organizational level as well as at the clinical level. The significance of parents' relationship with hospital staff indicates the potential for each professional to impact on families' experiences on a daily basis. The range of challenges indicates the scope and need for allied health services. [ABSTRACT FROM AUTHOR]

Background Very little research has examined the role of parenting in managing behavioural side-effects of cancer treatment. The purpose of this paper was to explore parent perceptions of (a) parenting in the context of childhood cancer; (b) the parenting strategies used in the context of managing child behavioural side-effects of cancer treatment; and (c) the perceived impact that cancer-specific parenting strategies have on child behaviour. Methods Participants were 15 mothers of children aged 2-6 years in the maintenance phase of treatment for acute lymphoblastic leukaemia at the Royal Children's Hospital Children's Cancer Centre, Melbourne, Australia. Mothers participated in a one-on-one semi-structured telephone interview using an interview guide which included questions on parenting in the context of childhood cancer, specifically in relation to behavioural side-effects (problems with behaviour, sleep and eating) and any perceived impact cancer-specific parenting may have on the ill child. Results Many parents reported that following their child's cancer diagnosis, they had to implement a suite of 'new' strategies that 'pre-diagnosis' were used only in moderation, if at all. The most salient theme that emerged was parents' perception that their parenting became more lax since their child's diagnosis. Parents further reported specific parenting strategies for each of the main child behavioural side-effects of cancer treatment. Conclusion Data from the current qualitative exploratory study highlight the role of specific parenting strategies in managing or assisting child behavioural side-effects of cancer treatment. Further quantitative research is needed to more fully examine the association between parenting and child behavioural outcomes in order to develop modifiable approaches to improving child behavioural side-effects in a paediatric oncology context. [ABSTRACT FROM AUTHOR]