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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: Children's educational experiences worldwide have been significantly impacted as a result of global school closures during the COVID‐19 pandemic of Spring 2020. A growing number of studies aim to analyse impacts of these changes on social well‐being, with limited studies placing an emphasis on the experiences of students with special educational needs (SENs). This article focusses on parent perspectives regarding impacts of school closures on social well‐being in Canadian children with SEN. Methods: This study uses a mixed‐methods approach, drawing from both qualitative and quantitative survey data from Spring/Summer 2020. Participants (n = 263) were eligible for participation if they were a parent/guardian of a child or adolescent with an SEN. We first conducted a descriptive analysis of the key variables, namely, social well‐being, grade level of the child, internet and device availability, and the presence of other school‐aged children in the home (single child vs. multiple children). Next, we explored the relationship between these using a bivariate correlation. Finally, open‐ended responses were analysed using an inductive approach to qualitative thematic analysis. Results: The majority of parents expressed concern for their child's social well‐being during the Spring 2020 school closures, with increased concerns for younger children. According to parents, children experienced communication barriers to peer interaction and many experienced emotional difficulties as a result. Technology was described as critical for some in maintaining social connections. Parents raised concerns about the impact of limited peer interaction on broader social skill development, in the short and long term. A small number of participants noted feelings of relief and reduced anxiety among their children with SEN. Conclusions: Findings highlight parent views of the negative impact of the pandemic on social well‐being and the critical role in‐person schooling plays in supporting peer relationships for children with SEN. [ABSTRACT FROM AUTHOR]

Aim: This research was conducted to evaluate the mediation effect of anxiety and life satisfaction on the relationship between Care burden and Parent Child Relationship in Turkish parents during the COVID‐19 epidemic. Methods: The research was carried out with parents (221 women and 219 men) who have children between the ages of 6–18 living in Turkey. Data were collected in June–July 2021 using the demographic data form, "Care Burden Scale," "Pervasive Anxiety Disorder‐7 Test," "Satisfaction with Life Scale," and "Parent Child Relationship Scale." Path analysis was used to analyse the relationships. In this study, structural equation modelling (SEM) was used to examine the path analysis. Results: It was found that the burden of care and anxiety of the parents and the parent–child conflict relationship were positively correlated and negatively correlated with the life satisfaction and parent–child closeness relationship (p < 0.05). Path model analyses revealed that the burden of care had a direct effect on anxiety and life satisfaction, and an indirect effect on the parent–child relationship, respectively. Conclusions: It shows that parents' perceptions of how the COVID‐19 pandemic is affecting their mental health have implications for parent and child well‐being, with stronger relationships for low‐income families. Anxiety and life satisfaction had a mediating effect between care burden and parent–child relationship. Given the demonstrable impact of COVID‐19 on the parent–child relationship, this study may guide the planning of coping strategies and programmes focused on mental health. [ABSTRACT FROM AUTHOR]

Background: In 2001, the International Classification of Functioning and Disability (ICF) introduced participation as a main goal of rehabilitation processes. However, to date, a comprehensive concept of participation in the rehabilitative context is missing, particularly in German‐speaking countries. We thus aimed to refine and extend the existing concepts of participation in this brief communication. Methods: In preceding studies, we conducted semi‐structured interviews with adolescents who either had chronic diseases and/or physical disabilities or had no impairments and focus groups with parents and experts. Based on these diverse perspectives and findings, we refine the term participation. Results: Participation is a construct that is embedded in a social context and consists of objective (i.e., attendance) and subjective (i.e., satisfaction and involvement) dimensions. These dimensions are reflected in different domains and areas that are relevant to adolescents' lives. In addition, the subjective relevance of respective areas in life needs to be regarded as a weighing component when evaluating participation. Conclusion: Our results reflect international models on participation, refine the existing concept, and underline the multidimensional character of participation. These findings are urgently needed to develop appropriate instruments, for example, for assessing whether rehabilitative processes are effective regarding the goal of participation. [ABSTRACT FROM AUTHOR]

Purpose: Managing type 1 diabetes (T1D) challenges children and their parents. Parents need to learn the necessary skills and later transfer the responsibility of care to their children as they develop. The transition process involves autonomy in behaviour and decision‐making. This study explores the shared management experiences of Taiwanese parents and their children with type 1 diabetes. Design and methods: This study employed a qualitative design using a grounded theory approach. Purposive sampling was used at a medical centre in Taiwan for participant recruitment. Twenty‐nine parents of children who had been diagnosed with T1D were interviewed in‐depth. Data were analysed using constant comparison and repeated verification. Results: After a child was diagnosed with T1D, the parents initiated 'Life‐long lesson: Growing together with the child on the road to normality'. Three main categories emerged: 'confronting the disease diagnosis', 'establishing supportive and collaborative involvement' and 'assisting the child in building a sense of belonging'. Sub‐categories within each significant category were also included. Conclusions: Taiwanese parents perhaps have a controlling or directive role for a long period in their child's lives and shared management of their health condition. This study's findings can help healthcare workers better understand the process of parents' shared management of T1D with their children and how to best communicate with children about the disease and care in accordance with the child's stage of development. [ABSTRACT FROM AUTHOR]

Background: Affecting one in 20 children, Developmental Coordination Disorder (DCD) is a common neurodevelopmental disorder impacting a child's ability to learn motor skills. Despite its high prevalence, DCD is under‐recognized and under‐diagnosed, causing unnecessary frustration and stress for families who are seeking help for their child. This study aimed to understand how parents procure diagnostic services and their perspectives on needed supports and services to improve early identification and diagnosis of DCD. Methods: Using a multi‐pronged recruitment strategy, we circulated the impACT for DCD online questionnaire to parents of children (<18 years) in British Columbia with suspected or diagnosed DCD. Data were analysed descriptively using medians/interquartile ranges for continuous data and frequencies/percentages for categorical data. Open‐ended questions were analysed using exploratory content analysis. Results: A total of 237 respondent data were analysed. Parents identified poor awareness and understanding of health care professionals and educators regarding aetiology, symptomology, and impacts of DCD, affecting timely access to diagnostic services. Long waitlists were also a barrier that often led families with financial means to procure private diagnostic assessments. Conclusion: A standard of care is needed for streamlined diagnostic services, enabling early identification and early intervention. A publicly funded, family‐centred, collaborative care approach is critical to assess, diagnose, and treat children with this disorder and to mitigate the secondary physical and mental health consequences associated with DCD. [ABSTRACT FROM AUTHOR]

Background: Paternal postnatal depression (PPD) symptomology has been positively associated with poorer outcomes for children. One mechanism by which PPD is thought to influence child outcomes is through parenting. The current study investigated the association between paternal postnatal depressive symptoms and parenting behaviours. Method: Fathers (N = 213) with an infant (mean age = 7 months, 46% female) between 2 and 12 months old were recruited through community and social media advertisements, as well as a paid survey recruitment website. Fathers completed a questionnaire on their symptoms of PPD and how they care for and raise their child (parental warmth, irritability, engagement in enrichment, play and safety behaviours). Results: Fathers experiencing greater levels of PPD symptomatology self‐reported higher irritability, lower warmth and fewer safe parenting behaviours but did not report lower enrichment or play with their infants. Conclusion: Overall, findings suggest that PPD symptomology may impact negatively on aspects of fathers' parenting behaviours. Further research using larger and more diverse samples is needed to assess the generalisability of these findings. [ABSTRACT FROM AUTHOR]

Background: Preterm birth is associated with adverse mental health outcomes, including internalizing problems, social difficulties and inattention. Interventions are needed beyond infancy and toddlerhood to support children and their families. We examined the feasibility and acceptability of the I‐InTERACT Preterm pilot study, an online parenting intervention for preterm children ages 3–8. Method: Families participated in a weekly intervention comprised of seven sessions with online modules followed by videoconference coaching sessions with a therapist. Following completion of the study, caregivers completed a survey to assess their satisfaction and were asked to participate in a voluntary semi‐structured interview to provide feedback. We anticipated greater than a 50% participation rate (enrollment feasibility) and 75% completion rate (adherence feasibility). We also hypothesized that at least 80% of participants would be satisfied with the intervention (acceptability). Results: Nineteen of 32 families (59%) enrolled in the study, suggesting adequate enrollment feasibility. Feasibility of programme completion (adherence) was lower than anticipated (59%). Regarding satisfaction, all caregivers agreed that the programme's information was relevant to them and their family. Nearly all participants (92%) indicated that they had a better understanding of the effects of preterm birth on behaviour, that they enjoyed the programme, that it met their expectations and that they recommend the programme to others. In qualitative interviews, caregivers expressed satisfaction with the content, skills they learned, and receiving direct coaching. Caregivers suggested improvements to increase intervention feasibility and skill implementation, including offering biweekly sessions and more hands‐on coaching. Conclusion: Our largely satisfactory acceptability rates suggest the value of and need for a parenting intervention for children born preterm past the initial period of early development. Future directions include modifying the intervention in response to caregiver feedback to improve recruitment, engagement and adherence. [ABSTRACT FROM AUTHOR]

Background: Individuals with autism with intellectual disabilities (ID) are increasingly undergoing genetic testing, posing questions of how parents view/respond to such results. Methods: Twenty‐eight parents whose offspring had received genetic diagnoses of de novo pathogenic variants associated with autism were interviewed. Results: Genetic diagnoses parents receive concerning their offspring's autism/intellectual disabilities can be 'double‐edged' in several ways, having advantages, but also certain disadvantages and limitations. Benefits were medical/scientific (e.g., ending diagnostic odysseys and potentially contributing to research), emotional (e.g., relief, peace of mind and less self‐blame), cognitive, social (e.g., validation and confirmation with others – it's 'not just in our head') and financial (e.g., estate planning), now and in the future (e.g., preparing for possible future symptoms, development and availability of treatment and setting realistic expectations). Limitations included a lack of medical treatments related to the genetic diagnosis, a sense of finality and heightened uncertainties which can increase anxieties (e.g., concerning additional symptoms associated with genetic diagnoses and offspring's ability to live independently in the future). Overall, parents were glad to receive the results, seeing the pros outweighing the cons. Parents responded to these tensions in various ways, having mixed feelings, recognizing the trade‐offs and/or focusing on their offspring's present needs. Factors such as age of offspring at receipt of genetic diagnosis, parent's scientific background and prior views and degrees of self‐blame affected these responses. Conclusions: These data, the first to examine how parents perceive genetic diagnoses received for offspring with autism and ID through whole exome/whole genome sequencing, highlight practical medical and psychological benefits as well as limitations. These findings thus have important implications for future education, engagement of families and research. Providers should be aware of these issues, to inform and assist families, who are considering such testing, about these potential pros and cons and responses. [ABSTRACT FROM AUTHOR]

Background: The F‐words Life Wheel (FWLW) approaches child development by hybridizing a holistic model in the F‐words for Child Development, and a coaching model in Occupational Performance Coaching, along with a life‐flow approach in the Kawa model. We report the impact of the FWLW as experienced by families. Methods: This was a qualitative interview study of parents of children with developmental needs and experts in child development using reflexive thematic analysis. Results: From 13 interviews, we developed three themes: 1) overwhelming, 2) power rebalance and 3) connectedness. The overwhelming theme addresses how life with developmental needs is challenging, engaging with the health and disability system is difficult and the focus on deficits can lead to a sense of being overwhelmed. The power rebalance theme addresses the transition from professionals calling the shots to giving agency to the child and family. Holistic goal setting empowers parents and children to direct and prioritize therapy, and helps shift from a deficit‐focused to a 'can‐do' attitude. The connectedness theme addresses the linkages between psychological health, physical health, the extended family and the planet as a whole. Conclusions: The FWLW approach appears to be empowering and motivating for children and families. [ABSTRACT FROM AUTHOR]

Background: Children with neuromuscular weakness or central hypoventilation often require nocturnal ventilation. Children with these conditions are living longer and the numbers of children affected are increasing. The challenges associated with managing ventilation at home have been documented; however, there has been limited investigation into accessing wider experiences such as travel. Air travel, in particular, may be considered challenging for children with these conditions because oxygen levels are lower in airplane cabins than at sea levels. Objective: We sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation. Methods: Two semi‐structured interviews were conducted amongst participants enrolled in a trial of a new pre‐flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19 months to 18 years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3 months later. Data were analysed utilising the framework approach to thematic analysis. Results: Seventeen families participated in the first interview with 14 of these families completing the follow‐up interview. Three further families participated in the follow‐up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub‐themes were (1) insight into children's lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality. Conclusions: This population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences. [ABSTRACT FROM AUTHOR]

Background: Parental participation in their young children's rehabilitation has been promoted to increase intervention intensity, but parents' perspectives on increased involvement remain unclear. The objective of this study was to explore parents' experiences partnering with physical therapists (PTs) to administer early, intensive rehabilitation to their young children with cerebral palsy (CP). Methods: Twelve mothers and one father of children between 8 months and 3 years old with CP were interviewed. Semistructured interviews were conducted before and after parents partnered with a PT to deliver a 12 week activity‐based intervention targeting their child's lower extremities. The intervention occurred in the child's home and in PT clinical sites. Interviews were audio recorded and transcribed verbatim. Interpretive description was used as the methodological framework. Results: The three themes were (1) focus on maximizing the child's potential, (2) participation in intensive rehabilitation is challenging, and (3) the importance of a positive experience with therapy. Families discussed a number of barriers and facilitators to participating in intensive rehabilitation. Conclusions: These results provide considerations for clinicians and researchers to facilitate meaningful engagement of parents in their young children's rehabilitation. This is especially important with increasing evidence for early, activity‐based interventions for young children with CP. [ABSTRACT FROM AUTHOR]

Background: Early childhood is a critical period for child development. Effective approaches to support families in low‐resource settings in the use of responsive and stimulating parenting are needed. Aim: The aim of this study was to examine the effects of the Reach Up early childhood parenting programme on children's development, parenting attitudes and practices, when delivered through early childhood development (ECD) centres in Zimbabwe. Methods: A cluster randomised controlled trial was conducted in Sanyati, a rural district in Zimbabwe. Twenty‐four of 51 available centres were randomised to intervention (n = 12) or control (n = 12) groups. Sixteen mothers with a child aged 12–30 months were recruited from each centre's catchment area (n = 189 intervention; n = 193 control). The intervention comprised two home visits per month delivered by centre teaching assistants over a period of 27 months. Primary outcomes were child Developmental Quotient (DQ), Language, Eye and Hand coordination, Performance and Practical Reasoning subscale scores assessed at follow‐up. Secondary outcomes were mothers' attitudes about child development, parenting practices and maternal depressive symptoms all measured at baseline and follow‐up. Intention to treat analyses was conducted using mixed‐effects regression models with the standard error adjusted for cluster and inverse proportionality weights to adjust for attrition. Significance was set at P < 0.05. Results: A total of 285 (74.6%) of 382 children enrolled were tested, with 97 children lost to follow‐up. The intervention improved the children's DQ by 3.55 points (95% CI 0.82 to 6.28), Eye and Hand by 3.58 (95% CI 0.59 to 6.56) and Practical Reasoning by 4.19 (95% CI 0.96 to 7.42). No significant improvements to Performance or Language scores, parenting attitudes, parenting practices and depressive symptoms were identified. Conclusions: A home visiting intervention delivered by ECD teaching assistants promoted children's development. This suggests that outreach from preschools may be an effective platform for delivery of parenting interventions. [ABSTRACT FROM AUTHOR]

Background: It is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting. Methods: Eleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one‐on‐one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six‐step thematic analysis to create an interpretive description of participants' transition experiences. Results: Three themes were generated: (1) "preparedness of the young adult and parent," which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self‐management skills during transition; (2) "coordination of transfer process and continuity of care," which illustrated the impact of transfer coordination on continuity of care; and (3) "adjusting to adult services," which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency. Conclusion: Dedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well‐coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs. [ABSTRACT FROM AUTHOR]

Background: Early diagnosis of cerebral palsy is possible by 5 months corrected age for 'at‐risk' infants, using diagnostic tools such as the Hammersmith Infant Neurological Examination (HINE), Prechtl's General Movements Assessment (GMA) and magnetic resonance imaging (MRI). This is an uncertain and stressful time for parents where provision of appropriate information and support is essential. Aim: To explore parents' views and experiences in relation to the new early neurodevelopmental follow‐up of 'at‐risk' infants. Methods: Thirteen in‐depth one‐to‐one qualitative interviews were conducted by the primary researcher, with eight parents (six mothers and two fathers) of 'at‐risk' infants eligible for a follow‐up clinic where the GMA and HINE were performed at 12‐week corrected age. Interviews used a pre‐piloted topic guide and took place before and after the clinic. Interviews were audio‐recorded, transcribed verbatim and analysed using inductive coding and thematic analysis using the framework approach. Findings: Seven themes were identified: (1) attempting to manage uncertainty, (2) taking priority, (3) trusting professionals, (4) independence in the parent role, (5) feeling understood, (6) patterns of care and (7) individuality. Parents reported experiencing uncertainty about their current situation and future. Adequate preparation for and timing of information are vital. When uncertainty is poorly managed, parents' wellbeing suffers. Individual parents' perspectives and infants' developmental trajectories differ, and information should be tailored specifically for this. Conclusion: A parent's understanding of the journey through neurodevelopmental care for their high risk infants is initially very limited. Implementing a counselling service for parents to access psychological support and digital reminder system for clinic appointments, as well as providing more tailored information through trusted professionals, could all improve future parents' experiences. [ABSTRACT FROM AUTHOR]

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family‐centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. Methods: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two‐way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line‐by‐line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. Results: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. Conclusions: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist‐led and child‐centred towards family‐centred care. [ABSTRACT FROM AUTHOR]

Background: Injuries are the leading cause of death and disability in preschool children who are subject to specific risk factors. We sought to clarify the determinants of unintentional injuries in children aged 5 years and under in high‐income countries and report on the methodological quality of the selected studies. Methods: A systematic review was conducted of observational studies investigating determinants of unintentional injury in children aged 0–5. Searches were conducted in Web of Science, Medline, Embase, PsycInfo and CINAHL. All methods of data analysis and reporting followed the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA 2021) guidelines. Determinants are reported at the child, parental, household and area level. Results: An initial search revealed 6179 records. Nineteen studies met the inclusion criteria: 17 cohort studies and 2 case control studies. While studies included longitudinal surveys and administrative healthcare data analysis, the highest quality studies examined were case–control designs. Child factors associated with unintentional injury include male gender, age of the child at the time of injury, advanced gross motor score, sleeping problems, birth order, attention deficit hyperactivity disorder (ADHD) diagnosis and below average score on the standard strengths and difficulties scale. Parental factors associated with unintentional injuries included younger parenthood, poor maternal mental health, hazardous or harmful drinking by an adult within the home, substance misuse, low maternal education, low paternal involvement in childcare and routine and manual socioeconomic classification. Household factors associated with injury were social rented accommodation, single‐parent household, White ethnicity in the United Kingdom, number of children in the home and parental perception of a disorganised home environment. Area‐level factors associated with injury were area‐level deprivation and geographic remoteness. Conclusion: Child factors were the strongest risk factors for injury, whereas parental factors were the most consistent. Further research is needed to examine the role of supervision in the relationships between these risk factors and injury. Injury intent should be considered in studies using administrative healthcare data. Prospective research may consider utilising linked survey and administrative data to counter the inherent weaknesses of these research approaches. [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: Children experiencing critical illness or injury may require admission to a paediatric intensive care unit (PICU) to receive life‐sustaining or life‐saving treatment. Studies have explored the experience of parents with a child in PICU but tend to focus on subgroups of children or specific healthcare systems. Therefore, we aimed to undertake a meta‐ethnography to draw together the published research. Methods: A systematic search strategy was developed to identify qualitative studies, which had explored the experiences of parents with a critically ill child treated in a PICU. A meta‐ethnography was undertaken following the structured steps of identifying the topic; undertaking a systematic search; reading the research; determining how the studies relate and translate into each other; and synthesising and expressing the results. Results: We identified 2989 articles from our search and after a systematic series of exclusions, 15 papers remaining for inclusion. We explored the original parent voices (first order) and the interpretation of the study authors (second order) to identify three third‐order concepts (our interpretation of the findings), which related to technical, relational and temporal factors. These factors influenced parents' experiences, providing both barriers and facilitators to how parents and caregivers experienced the time their child was in the PICU. The dynamic and co‐constructed nature of safety provided an analytical overarching frame of reference. Conclusion: This synthesis demonstrates novel ways in which parents and caregivers can contribute to the vital role of ensuring a co‐created safe healthcare environment for their child when receiving life‐saving care within the PICU. [ABSTRACT FROM AUTHOR]

Background: Increasingly, health services are adopting short‐term consultative therapy models, such as single session therapy, to cope with increased service demands, finite budgets and changing consumer expectations. Within the paediatric sub‐specialty of child development and behaviour, allied health clinicians are central to supporting families to understand their children, provide therapeutic interventions and help achieve optimal developmental and health outcomes. This study aimed to describe parents'/caregivers' engagement during advanced allied health consultations utilizing a single session therapy framework for managing neurodevelopmental and behavioural concerns in children. Methods: Between March to June 2021, 14 parents participated in a qualitative study involving focus groups. Reflexive thematic analysis was used to code and interpret the data to understand and explore families' engagement in single session therapy. Results: Three overarching themes relating to parents' engagement during consultations emerged from the data: connection with the clinician, parental attributes and organizational influences. Clinician connection was the prominent construct that enhanced parent attributes and the positive perception of the organization in an ongoing manner. There was a complex interplay between the behavioural and affective components of the clinician, parents and the organization to create mutual presence, valued time, understanding and action. Conclusions: This study demonstrates the importance of clinician connection, parental attributes and organizational influences to enhance engagement in therapeutic consultations. These factors are interrelated and are a complex blend of behaviour and internal states and highly individualized for each family. Understanding how services can continue to engage families is integral to ongoing sustainability and overall health and well‐being. [ABSTRACT FROM AUTHOR]

Background: High technological environments can be challenging for children with autism spectrum disorders (ASD), because they can be sensitive to new environments, new faces and changes in daily routines. Those children are frequent visitors in those settings, and due to their heightened healthcare needs and their comorbidities, it could constitute a challenge for healthcare professionals to encounter those children. Exploring the healthcare professionals' experiences can contribute to facilitate the procedure for a child with ASD. Method: A qualitative descriptive retrospective design with a critical incident technique has been used to capture the situations. Twenty healthcare professionals were interviewed about situations affecting the procedure in the high‐technology environments, defined as anaesthesia and radiology departments. Result: The findings revealed both favourable situations and unfavourable situations affecting the procedure in the high‐technology environment. The situations described by the healthcare professionals often involved their interactions with the child and the parents. The interactions were influenced by the parents' attitudes to the procedure and also the healthcare professionals and the parents' different expectations on the procedure. Other experiences described by the healthcare professionals were the unpredictability in different situations. Those situations were related to the child's unpredictable behaviour in those environments and also to the unpredictable effect of premedication provided to the child. Moreover, the result revealed the organizational prerequisites for facilitating a procedure, such as not feeling any time pressure when leading a child through a procedure. Conclusions: Interactions between healthcare professionals, children with ASD and parents in the high‐technology environment are complex. Unpredictability characterizes situations when leading a child with ASD through a procedure. This place demands on the healthcare professional, the environment and the organization. [ABSTRACT FROM AUTHOR]

Background: The process of receiving a communication of positivity for metabolic diseases at expanded newborn screening (ENBS) is extremely articulated, involves a variety of actors (parents, maternal and child departments, clinical centres and laboratories) and is open to a variety of outcomes from false positive to true positive cases. Receiving communication of positivity can be highly stressful for parents and requires an adequate communication process to give clear and reliable information without causing excessive worry. This qualitative study describes the parents' experience of receiving a communication of positivity to metabolic diseases at ENBS, and their assessment of the quality of the communication process and steps, with the main aim to identify the process' strengths and weaknesses and to advance tailored recommendations to improve the communication process. Method: Fourteen in‐depth, semi‐structured phone interviews were conducted with parents whose children resulted positive to the ENBS. As part of the ENBS communication process, parents received a first phone call communication of positivity and a second in‐person communication at metabolic clinical centres (MCC). The framework analysis method was used to organize the data and identify emerging themes. Results: Parents were largely dissatisfied with the quality and depth of the information received and with the way the healthcare staff delivered the first communication phone call, which failed to create a caring, empathic and safe setting. Many parents tried to reduce the uncertainty by searching online information or consulting with other providers. Nevertheless, the majority of parents described the in‐person visit at MCC as clear, welcoming and reassuring. Conclusion: More efforts are needed to improve the quality of the communication process of the ENBS. Guidelines, recommendations and standard scripts to communicate positivity are needed along with programmes and educational resources to train tailored communication skills. [ABSTRACT FROM AUTHOR]

Background: Deformational plagiocephaly can be prevented in many healthy infants if strategies are implemented early after birth. However, despite efforts to disseminate accurate information, parental adherence to evidence‐based prevention strategies is a challenge. To date, factors – barriers and facilitators – influencing parental adherence to strategies have yet to be identified in a comprehensive manner. Objectives: This scoping review aims to identify and synthesize current evidence on barriers and facilitators impacting adherence of parents of newborns to deformational plagiocephaly prevention strategies. Methods: This review followed the Joanna Briggs Institute (JBI) process guidelines. Seven electronic (Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, SPORTDiscus, Academic Search Complete, AMED, PsychINFO and Scopus) and two grey literature (Health Systems Evidence and Grey Literature Report) databases were searched. Studies published between 2001 and 2022 were included. The deductive thematic data analysis used was guided by the Capability, Opportunity, Motivation Behavioral Model (COM‐B) of health behaviour change. Results: From a total of 1172 articles, 15 met the eligibility criteria. All components of the COM‐B framework were identified. Capability‐psychological and opportunity‐environmental factors dominated the literature, whereas capability‐physical, motivation and, in particular, opportunity‐social factors were understudied. The most often reported barriers were a lack of knowledge of deformational plagiocephaly and the associated prevention strategies, ambiguous or inconsistent messaging, intolerance of babies to prone positioning and a lack of time. The most frequently reported facilitators were an awareness of deformational plagiocephaly, postural asymmetry and prevention strategies, skill acquisition with practice, accurate convincing information, scheduled time and environmental organization to position the baby at home. Discussion: Recommendations focused on diffusing accurate and detailed information for parents. Our review also suggests a gap regarding the comprehensive identification of factors influencing parental adherence to deformational plagiocephaly prevention strategies. Further studies exploring comprehensive opportunity‐social and motivation factors influencing parental adherence to deformational plagiocephaly prevention strategies are warranted to inform prevention programmes and foster better infant outcomes. [ABSTRACT FROM AUTHOR]

Background: Recently, there has been an increase in the development of transition services for adolescents with cerebral palsy (CP). Studies have emphasized the importance of addressing parents' needs during their children's adolescence. Aims: This study aimed to understand how parents experience the adolescence and transition to adulthood of their adolescents with CP and to identify relevant components for the development of a service for families. Methods and procedures: A qualitative study was conducted with 18 families of adolescents with CP. Caregivers were purposely recruited from a transition programme called Adolescence in Focus Program. Individual interviews were conducted using a semistructured script. Then, the caregivers were invited to participate in focus groups. The interviews and focus groups were recorded and transcribed for content analysis. Results: Three categories emerged: 'The onset of adolescence', 'What will our future be?' and 'Support and services: paths to follow'. The adolescents' behavioural changes seemed to be intensified by their restricted social participation. Parents reported the desire for their adolescents to become independent in daily activities. Regarding their own future, they aimed to re‐establish the occupational roles that were interrupted. Conclusion: Information from this study guided the design of a programme for families regarding content, format and outcomes. [ABSTRACT FROM AUTHOR]

Objective: One of the main concerns of parents is the amount of screen time of their teenagers, and most of them try to set rules about it. The objective of this exploratory study was to compare whether parents' rules changed during confinement and whether these changes were successful. Methods: We studied a group of parents (N = 47) of 13‐year‐olds in Switzerland surveyed before and during the COVID‐19 pandemic. Results: Most parents (83%) indicated that screen‐time rules for their teens had changed during containment, mainly to be less strict. Although only a minority of parents were successful in defining screen‐time spaces or schedules for their teenagers, almost three out of four were successful when they encouraged non‐screen‐based activities. Conclusions: This exploratory study reveals that, during containment, parents decided to be less strict with their teens' screen‐time use even though it remained their main worry. However, it also suggests that when activities non‐involving screens are proposed, teens are likely to participate. These results seem to indicate that reducing screen time is not a matter of imposing restrictions but, rather, of proposing alternatives. Finally, further research is warranted to assess whether these changes in screen‐time use are exceptional or here to stay. [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: Paediatric chronic pain adversely impacts the child's functioning, health‐related quality of life and development. However, there is a need for a holistic assessment of parental impacts of caring for a child with chronic pain. This qualitative study aimed to investigate the possible psychosocial, functional and work impacts of caring for a child with chronic pain on parents, including any positive effects of the experience. Methods: Ten parents (eight mothers and two fathers), whose child attended the Sydney Children's Hospital Interdisciplinary Chronic and Complex Pain Clinic, participated in semi‐structured interviews exploring the impact of caring for a child with chronic pain. Interviews were audio‐recorded, transcribed, coded (with good inter‐coder agreement) and analysed using thematic analysis. Results: The parental experience of caring for a child with chronic pain was encapsulated by four overarching themes: (1) 'the constant and all‐consuming nature of pain' – parents described the unpredictable, yet constant nature of chronic pain, contributing to wide‐reaching impacts in various areas of their life; (2) 'dealing with uncertainty' – their experience was commonly characterized by a sense of uncertainty, stress, hopelessness and fear; (3) 'importance of support and self‐care' – strong support networks and prioritizing self‐care were crucial in alleviating the negative effects of paediatric chronic pain; and (4) 'a revitalized and optimistic view on life and relationships' – some parents identified unique and positive effects, such as stronger relationships, personal growth and a reformed view on life. Conclusions: This study provided rich data on the various impacts of caring for a child with chronic pain, highlighting the need for the development of holistic, family‐centred interventions addressing both child and parental functioning. [ABSTRACT FROM AUTHOR]

Background: Parents' beliefs and behaviours affect children's nutrition, eating behaviours, and health outcomes; however, little is known about parents' experiences and perspectives on establishing a healthy diet with young children. Methods: A community‐recruited sample of 391 parents of young children (under age 5) completed an anonymous cross‐sectional online survey assessing the degree to which their children met recommendations outlined in Australian nutrition guidelines, perceived barriers to establishing a healthy diet with their child, and interest in receiving tips/information about establishing healthy eating habits with their children. Descriptive statistics illustrated proportions of children adhering to recommendations. Thematic analysis was used to analyse qualitative data. Results: Adherence to recommended nutrition guidelines varied across age groups. Most children across all age groups had water as their main drink, routinely consumed a variety of fruit, and consumed sweet drinks or fast foods only rarely. In contrast, less than half of 2‐ and 3‐year‐olds regularly consumed a variety of vegetables. The proportion of children consuming discretionary "treat" foods increased sharply over the first 2 years of life, and two thirds of 2‐, 3‐, and 4‐year‐olds consumed treat foods a few days per week or more. Parent‐reported barriers to establishing a healthy diet with young children included child behavioural factors (e.g., dislike of vegetables), parental influences (e.g., lack of time), family dynamics (e.g., influence of extended family) and external influences (e.g., external environment). Parents were most often interested in ways to modify child behaviour and information about child nutrition. Conclusions: Parents cite child behavioural issues as a major barrier to establishing a healthy diet with young children. Behavioural interventions that provide parents with information and support on how to establish a healthy diet with young children, as opposed to educational interventions focusing mainly on what children should be eating, may better meet families' needs. [ABSTRACT FROM AUTHOR]

Background: The Parenting for Lifelong Health for Young Children (PLH‐YC) programme aims to reduce violence against children and child behaviour problems among families in low‐ and middle‐income countries (LMICs). Although the programme has been tested in four randomised controlled trials and delivered in over 25 countries, there are gaps in understanding regarding the programme's implementation fidelity and, more generally, concerning the implementation fidelity of parenting programmes in LMICs. Aims: This study aims to address these gaps by examining the psychometric properties of the PLH‐YC‐Facilitator Assessment Tool (FAT)—an observational tool used to measure the competent adherence of PLH‐YC facilitators. Examining the psychometric properties of the FAT is important in order to determine whether there is an association between facilitator competent adherence and programme outcomes and, if correlated, to improve facilitator performance. It is also important to develop the implementation literature among parenting interventions in LMICs. Methods: The study examined the content validity, intra‐rater reliability, and inter‐rater reliability of the FAT. Revision of the tool was based on consultation with programme trainers, experts, and assessors. A training curriculum and assessment manual was created. Assessors were trained in Southeastern Europe and their assessments of facilitator delivery were analysed as part of a large‐scale factorial experiment (N = 79 facilitators). Results: The content validity process with PLH‐YC trainers, experts, and assessors resulted in substantial improvements to the tool. Analyses of percentage agreements and intraclass correlations found that, even with practical challenges, assessments were completed with adequate yet not strong intra‐ and inter‐rater reliability. Conclusions: This study contributes to the literature on the implementation of parenting programmes in LMICs. The study found that the FAT appears to capture its intended constructs and can be used with an acceptable degree of consistency. Further research on the tool's reliability and validity—specifically, its internal consistency, construct validity, and predictive validity—is recommended. [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: Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity while aiming to improve gross motor function for children with cerebral palsy (CP). Little research has explored the complexity of parental decision‐making experiences surrounding SDR surgery and required rehabilitation. The aim was to explore parental experiences and expectation in the decision‐making process around the SDR operation, physiotherapy treatment and outcomes. Method: Qualitative methods using in‐depth, semi‐structured interviews were used. Eighteen parents (11 mothers and 7 fathers) participated whose child had SDR and completed 2‐year post‐operative rehabilitation. Data were analysed using thematic analysis. Results: Decision making involved an interacting process between the 'parental information seeking experience', 'influence of professional encounters and relationships' and 'emotional and social aspects'. Despite underlying uncertainties about outcomes, parental drivers of expectations and aspirations for their child preceded and sustained this decision‐making process. A foundational narrative of 'wanting no regrets' resolved their decision to undertake SDR. Outcomes did not always match expectations, and parents moved away from a position of idealism, which was driven in part by parental information seeking including overly optimistic media representation. Conclusion: Universally, parents expressed they had 'no regrets' on their decision, yet many felt a mismatch between expectation and outcomes of SDR surgery. A greater understanding of the complex nature of SDR decision making is required to help improve family preparedness and provide support from clinicians to enable balanced discussions in parental decision‐making. [ABSTRACT FROM AUTHOR]

Background and Objectives: Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post‐traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. Methods: We conducted semi‐structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. Results: Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. Conclusions: Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma‐informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has resulted in substantial disruptions to daily functioning and lifestyle behaviours, with negative health consequences for youth. Parents play a large role in their children's health behaviour; yet changes to parenting behaviours during the pandemic related to food and physical activity remain relatively unexplored. The present study is the first to our knowledge to examine specific changes in American parents' parenting behaviours related to food and physical activity during COVID‐19, and potential correlates of such changes, including perceived stress and decision fatigue. Methods: A total of 140 parents (88.57% female; 88.41% White; 87.59% married; with one to five children) from middle to upper income households completed an online survey assessing demographics, perceived stress (Perceived Stress Scale), decision fatigue (Decision Fatigue Scale) and food and activity parenting behaviour changes during COVID‐19. Results: Overall, a greater proportion of parents engaged primarily in positive (57.14%) than negative (22.86%) parenting practices related to food and physical activity during the pandemic. Moderation analyses showed that the negative relation between perceived stress and positive parental behaviour changes was stronger at higher perceived increases in decision fatigue during the pandemic. Conclusions: In the face of a major public health crisis, adaptive parental responses may emerge, but perceived stress may inhibit such behaviour change. Perceived stress and decision fatigue may represent important explanatory factors in parental health promoting behaviours during times of uncertainty and change. [ABSTRACT FROM AUTHOR]

Background: During COVID‐19 restrictions in England in spring 2020, early years settings for young children were closed to all but a small percentage of families, social contact was limited and play areas in parks were closed. Concerns were raised about the impact of these restrictions on young children's emotional well‐being. The aim of this study was to explore parents' perceptions of young children's emotional well‐being during these COVID‐19 restrictions. Methods: We interviewed 20 parents of children 3–4 years due to begin school in England in September 2020. Interviews were conducted via telephone (n = 18) and video call (n = 2), audio‐recorded and transcribed verbatim. Interviews focused on childcare arrangements, children's behaviour and transition to school. A sample of transcripts were coded line by line to create a coding framework, which was subsequently applied to the remaining transcripts. Coded data were then analysed using a nurture lens to develop themes and further understanding. Results: Participants were predominantly mothers (n = 16), White British (n = 10) and educated to degree level (n = 13), with half the sample living in the highest deprivation quintile in England (n = 10). Five were single parents. Three themes developed from nurturing principles were identified: creating age‐appropriate explanations, understanding children's behaviour and concerns about school transition. Parents reported that their children's emotional well‐being was impacted and described attempts to support their young children while looking ahead to their transition to primary school. Conclusions: This study is one of the first to examine in‐depth perceptions of COVID‐19 restrictions on young children's emotional well‐being. The longer term impacts are not yet understood. Although young children may be unable to understand in detail what the virus is, they undoubtedly experience the disruption it brings to their lives. The well‐being of families and children needs to be nurtured as they recover from the effects of the pandemic to allow them to thrive. [ABSTRACT FROM AUTHOR]

Aims: Parents of children with spinal muscular atrophy (SMA) often struggle with the all‐consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID‐19 pandemic situation. Method: Nineteen parents of 21 children (15 months to 13 years of age) with SMA types 1–3 participated in semi‐structured interviews in June to July 2020. The interviews were analysed using inductive thematic analysis. Results: Parents mentioned the protection of the health and well‐being of the child as the central perspective and driving force during the COVID‐19 pandemic. Three subthemes were identified: (1) responsibility, (2) balancing vulnerability and resilience and (3) (in)security. Some parents focused on the positive aspects during the lockdown, such as continuation of nusinersen treatment and family life. Some parents described helpful and positive cognitions to cope with the situation. In general, parents described a need for information with regard to COVID‐19 and their child with SMA and a need for discussing their dilemmas and insecurities with a healthcare professional. Interpretation: Parents put the health and well‐being of their children first during the pandemic. From this study, we learned that parents of children with SMA need information and value direct contact with a healthcare professional to share their dilemmas and insecurities. The dialogue can help to empower parents in the conflicts and decisions they have to make during a pandemic. [ABSTRACT FROM AUTHOR]

Objectives: As a response to the lockdown associated with COVID‐19 in the Philippines, therapy services for children with developmental disorders shifted to telehealth (i.e., teletherapy). This study evaluated the delivery of teletherapy from the perspectives of parents and therapists. Methods: Participants consisted of parents (n = 47) and therapists (n = 102) of children with developmental disorders who were receiving teletherapy during the lockdown. A mixed‐methods triangulation design‐convergence model was adopted; participants were invited to respond to an online survey with closed‐ and open‐ended questions. Quantitative data were analysed using descriptive and non‐parametric inferential tests, while qualitative data were examined using thematic analysis. Results: Overall satisfaction with teletherapy was positive, with parents reporting significantly higher satisfaction compared with therapists. Satisfaction was positively associated with the frequency of teletherapy sessions for parents and with their years of experience for therapists. The top enabling factors were family participation and effective communication. The main challenges were time constraints and difficulty with instruction and monitoring associated with the two‐dimensional nature of teletherapy. The benefits included parents' empowerment and enhanced understanding of their children's needs. Discussion: Delivery of teletherapy was enabled by a heightened focus on family‐centred care. The evaluation findings suggest that the general satisfaction with teletherapy and the benefits associated with family‐centred care would potentially promote teletherapy as a service delivery mode to continue beyond the pandemic. [ABSTRACT FROM AUTHOR]

Background: Children with learning disabilities (LD) are more likely to have health conditions that require hospital attendance than children without LD. Like all children, they can experience fear and distress related to procedural anxiety. Parents play a key role in managing procedural anxiety in children with LD. No previous published qualitative studies have explored parental experiences of caring for a child with LD and procedural anxiety in hospital. Objectives: To explore how parents experienced caring for their child with LD and procedural anxiety in hospital. Methods: A purposive sample of six participants were recruited through a Facebook group for parents of children with LD. Remote semi‐structured interviews were conducted via telephone, Microsoft Teams or Whatsapp. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis. Results: Five key themes were generated: (1) Emotional toll: parents characterized their experiences as highly emotional; reporting feeling stressed, anxious and worried. (2) Restraint and holding: parents spoke of their experiences of restraint which was largely viewed as negative and sometimes inappropriate. (3) Advocacy: parents articulated their responsibility as advocates for their children. (4) Going it alone: parents were extremely proactive in managing their child's anxieties but some also felt highly‐pressurized and isolated. (5) Inconsistency and uncertainty: parents experienced inconsistency and uncertainty in their children's care from healthcare professionals which led to anxiety and frustration. Conclusion: Parents of children with both LD and procedural anxiety experienced many challenges. Parents' expertise must be utilized by clinicians when caring for children with LD and procedural anxiety whilst ensuring appropriate support for parents. Nurses require specific training in psychosocial interventions to enhance care for children with LD and procedural anxiety. Further research identifying effective nursing strategies to enhance parental experiences would be beneficial to improve care to this patient group. [ABSTRACT FROM AUTHOR]

Background: Parents' lived experiences of having a child with ADHD may shape their decision making regarding ADHD treatment options for their child. The aim of this study was to explore parents' experiences of living with a child with ADHD in the family and how their experiences influence their perspectives on treatment preferences and priorities. Methods: A phenomenological qualitative design was used. Semistructured interviews were conducted with parents of children with ADHD who were enrolled in a multisite randomized controlled trial. Interviews were transcribed verbatim, and transcripts at each site were double coded. Initial codes were derived directly from the text. Qualitative data were analysed with an inductive approach. Results: Twenty‐three parents were interviewed: eight from Alberta, Canada; eight from Portland, Oregon, USA; and seven from Columbus, Ohio, USA. Among the parents, 69% were married, 86% completed college education and 52% reported household income over $80,000. Among the children, the mean age was 9.6 years (SD = 1.8 years), 78% were boys and 48% were never medicated for their ADHD. Two major themes emerged from the analysis. Theme 1 was 'impact of ADHD on families within and outside the home' with the following subthemes: 'reconfiguring the home life', 'trial‐and‐error of accommodations at school' and 'responding to social pressures to fit in'. Theme 2 was 'enabling appropriate and accessible treatments for families' with the following subthemes: 'finding the "right fit" with professionals and treatments' and 'factors influencing inequitable access to treatments'. Conclusions: Parents described shared experiences and identified similar barriers, preferences and priorities for ADHD treatments regardless of demographic differences by site. Families desired access to family‐centred, multimodal approaches to ADHD treatment. Further research is needed to identify the specific structural changes to healthcare, services and policies that will better support this approach. [ABSTRACT FROM AUTHOR]

Background: CLN3 disease is a neurodegenerative condition presenting in the first decade of life typically leading to death in the third decade. The earliest symptom is rapidly progressive visual impairment followed by intellectual and motor impairments, epilepsy and behavioural disturbances. There are limited data on how the condition affects the family system or the role of family resilience in paediatric neurodegenerative diseases. Methods: Semi‐structured interviews were conducted with eight parents (five mothers and three fathers) of five children with CLN3. Interview questions focused on the experience of having a child with CLN3, its impact on the family system as well as the concept of family resilience. Data were analysed via thematic analysis. Results: The thematic analysis resulted in four main themes. The theme 'recurring losses' included the feeling of losing a healthy child, the child's loss of abilities and loss of relationships. The theme 'disruption to the family system' included that siblings could be 'side‐lined', the potential negative impact on romantic relationships and difficulties finding time to oneself. The theme 'Society is not developed for a progressive disease' highlighted the difficulties parents faced with respect to contacts with the health and/or social insurance system. The paediatric health care system was seen as supportive, but the adult health care system was not seen as fit for the purpose. Regarding family resilience, parents felt that the disease forced them to reconsider what was important in life. Several parents described that they learned to value small moments of joy and create deep connections through involvement in family routines and rituals. Conclusions: CLN3 places a very significant burden on the family system including parental feelings of loss, impact on family relationships and lack of understanding within the health/social insurance systems. The concept of family resilience may be useful in understanding the experiences of families affected by paediatric neurodegenerative conditions. [ABSTRACT FROM AUTHOR]

Background: Although the academic difficulties of children with spina bifida (SB) are well‐documented, there is limited literature on parents' views of their children's school experiences and school‐related supportive services. Thus, the current study examined parents' school‐related concerns, as well as perceived areas of strength, among children with SB. Methods: Using a mixed‐methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8–15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school‐related concerns and perceptions of their child's strengths. Results: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self‐advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. Conclusions: The mixed‐methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education‐related stressors. [ABSTRACT FROM AUTHOR]

Background: Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well‐being. Health professionals supporting children with CP have been encouraged to focus on parental well‐being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play‐based groups for children with CP and their parents, with a focus on the groups' impact on parents' well‐being. Methods: Parents of children with CP who had attended play‐based groups in the year prior were recruited for this qualitative study. Semi‐structured interviews were conducted, audio‐recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach. Results: Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well‐being. Four themes described mothers' experiences of the groups and the subsequent impact on their well‐being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well‐being. This included mothers' individual experiences of having a child with CP. Conclusions: Interventions combining practical and social support for the whole family can have a positive impact on the well‐being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one‐size‐fits‐all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP. [ABSTRACT FROM AUTHOR]

Background: To explore how parents of children with cancer offer educational supports during the treatment process. Methods: Based on a descriptive qualitative method design, 29 mothers and 19 fathers of children with cancer were interviewed on their experiences of supporting their child's education during their child's treatment through semi‐structured interviews. Result: Six themes were summarized from the parents' experiences in supporting their child's education during treatment: initial emphasis on survival over education; educational strategies important when returning to everyday life post‐treatment; parents and educators have different expectations; child's extracurricular activities provided a sense of accomplishment; preparing for transition to school; and long‐term concern was for the child's health and happiness. Conclusion: Education is part of children's normal development, but education is often placed on hold for a child receiving cancer treatment. Parents of children with cancer are unable to focus on the child's education because of the threat to their child's life. When their child's illness stabilizes, they will begin to utilize their resources to arrange lessons to facilitate returning to school. Through understanding parents' learning expectations, medical professionals can support adjustments to parents' attitudes. [ABSTRACT FROM AUTHOR]

Background: Primary health care is the foundation of a health system and has a strong influence on the efficiency of the health system as a whole. For children in Europe, it is defined by three primary health care models: paediatric; mixed paediatrician and family physician; and family physician. There is much debate in Europe about which model is most appropriate for children. The Lithuanian model is mixed, although health policy is geared towards the promotion of family physicians, with a decline in the number of primary paediatricians in clinical practice. Objectives: To review the children's primary health care system in Lithuania, compare the indicators of primary care by family physicians and paediatricians in Lithuania, and identify parents' perceptions of the primary health care model for children. Methods: A retrospective longitudinal study was performed of children's primary health care indicators for quantity and quality in 2014–2018. A representative opinion survey of 1000 adult respondents was conducted. Results: A total of 3.5 million children's visits to primary care physicians (6.7 ± 3 visits for each child) were registered in Lithuania in 2018. During a recent 5‐year period (2014–2018), the number of visits did not change significantly. Visits to paediatricians accounted for 41% of all children's visits to primary care physicians in 2018. Visits to Emergency Departments increased by 20%. The results of the survey showed that 72.3% of the respondents would prefer their children be treated by a primary care paediatrician. Conclusion: The mixed paediatrician and family physician health care model gives parents the right to choose. The results showed a decreased number of paediatricians in primary care; paediatric primary care is more frequent than family physician care; and parents tend to trust paediatricians more. The study also showed differences in the models of service used and patterns between regions in Lithuania. [ABSTRACT FROM AUTHOR]

Background: Parental views and expectations about family-centred care (FCC) need to be understood for its successful implementation. Knowledge of caregiver's perceptions and needs, within their social and cultural context, forms the basis for effective health care partnerships with families. The purpose of this study was to explore perceptions about FCC among caregivers of children with cerebral palsy (CP) in South India. Method: Fourteen caregivers of children with CP (aged 4-12 years) living in rural areas of the coastal region of Karnataka, India, participated in this qualitative study. Face-to-face semi-structured interviews were recorded and transcribed for analysis using the framework and hybrid approaches. Thematic mapping of the categories and themes was done to explore relationships about perceptions of FCC. Results: Caregiver's life emerged inductively as a new theme highlighting caregiver's own physical and mental health, family roles and well-being, integrating the onus of care with household responsibilities, limited participation in personal activities and social isolation. The qualitative findings revealed the ubiquity of respectful and trusting relationships with health professionals while expressing paucity of coordinated comprehensive care, sporadic partnerships and opportunities for shared decision-making; desire for receiving specific information related to child's progress and prognosis; and general information on community resources and the need of empowerment and support groups. Conclusion: Our study has practical implications for the implementation of FCC within the South Indian context, by recognizing unique caregiver needs and expectations in sync with cultural perspectives towards childhood disability such as societal stigma, values and traditional beliefs; attitudes towards medical professionals; and life stressors and gender responsibilities. [ABSTRACT FROM AUTHOR]

Background: A crowd‐sourced Canadian platform that collects information across neurodevelopmental disabilities (NDDs) can (1) facilitate knowledge mobilization; (2) provide epidemiological data that can benefit knowledge, treatment, and advocacy; and (3) inform policy and resource allocation decisions. We obtained input from parents of children with NDDs about relevance and feasibility of questionnaire items as a first step to inform questionnaire development of a stakeholder‐driven, national platform for data collection on children with NDDs. Methods: A parent of a teenager with NDDs was a research partner on the project. Through four focus groups and using a guided discussion consensus process, 16 participants provided feedback on whether questionnaire items from existing instruments related to function and disability were feasible for parents to complete and important to include in the platform. Data were analysed using content analysis. Results: Participants (1) indicated that questions about medical history, general health, body functioning, self‐care, access to resources, and outcomes (e.g., quality of life) are important to include in the platform and are feasible for self‐completion; (2) provided various suggestions for the questionnaire ranging from additional items to include, using non‐medical language, and keeping completion time from 20 to 30 min; (3) identified incentives and knowing the purpose of the platform as strong motivators to platform participation; (4) spoke about the challenges of their caregiver experience including impact of caregiving on themselves and barriers to accessing services; and (5) highlighted the isolation experienced by their children. Conclusion: Through the focus groups, parent stakeholders contributed to questionnaire development and shared their caregiver experiences. Obtaining feedback from youths with NDDs and healthcare providers on the questionnaire is a next step to validating findings. Stakeholder engagement is fundamental to developing a platform that will inform research that is relevant to the needs of children with NDDs and their families. [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]

Family‐centred care (FCC) has been established as a best practice model for child disability services internationally. However, further empirical support is required to explore the operationalization and efficacy of FCC, in the absence of a universal practice model. This review aimed to identify the key processes and outcomes of FCC in early intervention (EI) settings and the factors that impact FCC. A systemic review was conducted exploring the processes and outcomes of FCC delivered to children predominantly aged 0–6 years with disabilities/suspected disabilities and families as part of EI or early services. The search procedure was informed by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines (Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke (2006, 2014). Data were presented as per the standards for reporting qualitative research (SRQR; O'Brien et al., 2014). Forty‐two studies were included. The majority (90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes. Processes were largely reported as qualitative data and/or subscales of the Measure of Processes of Care (MPOC; King et al., 1995), which were subsequently collated. Findings indicated eight key operational processes and corresponding outcomes. Variables that hinder or facilitate FCC included family/professional characteristics, family/service resources, and parent attitudes, engagement and agency. FCC was largely conceptualized as the application of services to children and their families. Critical perspectives on FCC are discussed. It is hoped this research will contribute to the development of a framework of FCC in EI to inform services provided to young children with complex needs and their families and future research. [ABSTRACT FROM AUTHOR]

Background: Nutrition has significant importance in the course of growth and development in early childhood. Selective and fussy eating is prevalent among children with autism spectrum disorder and can have a profound impact on parents' mealtime actions. Aims: The study aimed to investigate the relationship between parental mealtime actions and the eating behaviours of children aged 3–5 years with typical development (TD) and autism spectrum disorder (ASD). Methods: A total of 180 parents of children between 3 and 5 years in Ankara participated in the study; 90 were parents of children with TD, and 90 were parents of children with ASD. We measured the variables using the Brief Assessment of Mealtime Behaviour in Children (BAMBIC), Children's Eating Behaviour Questionnaire (CEBQ), and Parent Mealtime Action Scale (PMAS). Results: The results revealed that food refusal, disruptive behaviours, and limited variety in TD children were related to parental actions, such as the use of rewards. We also found a negative correlation between enjoyment of food and the use of rewards. Children with ASD displayed differences concerning food refusal, and their parents were found to prepare more special meals for them compared with children with TD. Conclusion: Despite differences, the eating behaviours of children with TD and ASD show similarities in some cases. If a child has a low interest in eating, then their parents tend to be more insistent, use more rewards, and offer special meals. On the contrary, a child's high interest in eating harms such parental behaviours. Because an acknowledgement that a relationship exists between the eating behaviours of children and parental actions would make intervening to shape parental attitudes easier, it is recommended that future studies should be carried out to respond to the eating problems of children by working with parents. [ABSTRACT FROM AUTHOR]