Systematic review of the effectiveness of innovative, gamified interventions for cognitive training in paediatric acquired brain injury.

Effectiveness of innovative, gamified interventions (i.e., Augmented Reality, Computer-Based Cognitive Retraining [CBCR], and Virtual Reality [VR] in conjunction with a Serious Game) for cognitive training in paediatric ABI was evaluated. Studies were identified on PsycINFO, PubMed and Scopus; last searched 4 January 2022. Eligibility criteria were participants diagnosed with ABI and aged ≤ 18 years, experimental intervention to train cognition, cognition assessed pre- and post-intervention at: (1) The level of function, or (2) The level of activity, and written in English. ROB 2 and ROBINS-I were utilised to assess risk of bias. Extracted study characteristics were methods, participants, interventions, outcomes, and results. Seven studies were included, comprising six CBCR studies and one VR study, with 182 participants. Following CBCR: (1) Improvements were observed in several cognitive functions, but there was inconsistent evidence; (2) Improvements were reported in attention and executive functions (EF) at home and at school. Following VR: (1) Improvements were observed in attention and EF; (2) Not evaluated. Due to the small number of included studies with (relatively) small and heterogeneous samples, only a cautious interpretation of the evidence was provided. There is a need for carefully designed studies with more attention to inter-individual differences and generalisation to daily life.

The views of parents of children with cancer and pediatric physical therapists on a network for continuity and optimal quality of care for children with cancer: KinderOncoNet.

PURPOSE: Children with cancer require specific therapeutic guidance. Parents prefer physical therapy close to home, while pediatric physical therapists (PPTs) working in the community may lack specific knowledge. The aim of this study is to determine the needs of parents of children with cancer and PPTs to inform the design and development of a care network, named "KinderOncoNet." METHODS: We explored the perspectives and needs of parents of children with cancer and PPTs in the community, and we investigated the added value that KinderOncoNet could offer. We used an iterative process; data collection consisted of (1) gathering information from parents of children with cancer and PPTs through a survey and (2) co-creation sessions with stakeholders. RESULTS: In total, 98 parents and 177 PPTs participated in the survey. Parents (97%) and PPTs (93%) indicated that the care network would bring added value. All but one parent stressed the importance of a local PPT being aware of both the condition and the side and late effects of oncological treatment. Moreover, 40% of PPTs thought they do not have sufficient knowledge to provide high-quality therapy and that they would embrace opportunities for education. Through the co-creation sessions, a prototype of the care network was conceptualized. CONCLUSION: KinderOncoNet can contribute to the continuity and quality of physiotherapy care for children with cancer during and after the oncological treatment. Such a network would allow for sharing knowledge, developing skills, and improving accessibility and communication in the Netherlands.

Impact of contractures on daily functioning in adolescents with spinal muscular atrophy: a qualitative study.

PURPOSE: Exploring the impact of contractures in adolescents and young adults (AYA) with spinal muscular atrophy (SMA) on daily functioning and participation and the impact of received contracture management. METHODS: We included 14, non-ambulant AYA with SMA types 2/3 (10 females and 4 males), aged 16-30 years. Interviews focused on two topics: perceived impact of contractures on daily functioning and of previous contracture management. We used inductive thematic analysis for interview analysis. RESULTS: In general, participants experienced muscle weakness to be more of a hindrance than contractures; they had adapted to their contractures over time. Participants considered contracture treatment useful when goals were meaningful and realistic. Participants mentioned that their perspective on contracture management would change in light of a promise of improved motor function due to disease-modifying treatment. CONCLUSION: Despite the relatively low impact of contractures in comparison to the loss of muscle strength, non-ambulant AYA with SMA should be informed on the potential impact of contractures and benefits and potential adverse effects of their management. This information can support the shared decision-making process. While respecting individual choices, allows for incorporating interventions into daily life and the promotion of daily functioning and participation when children with SMA are growing up.

The variability of the perceived impact of contractures in non-ambulant adolescents and young adults with spinal muscular atrophy (SMA) underscores the need for individualized assessment and contracture management based on discussions about challenges, benefits and burden.In the treatment plan for contracture management in SMA it is important to take into account: 1) that adolescents often experienced physiotherapy as additional comfort, with less feeling of stiffness, and 2) that most perceived orthosis and standers as unnecessary and burdensome as contracture management.Clinicians should consider postural management in an early stage given the improved prognosis on motor development of children with SMA.Clinicians should monitor and revisit treatment goals, benefits and adverse effects on a regular basis as part of the shared goal-setting and decision-making in contracture management for children with SMA.

Implementing the language comprehension test C-BiLLT: a qualitative description study using the COM-B model of behaviour change.

BACKGROUND: It is challenging to reliably assess the language comprehension of children with severe motor and speech impairments using traditional assessment tools. The Computer Based instrument for Low motor Language Testing (C-BiLLT) aims to reduce barriers to evidence-based assessment for this population by allowing children to access the test using non-traditional methods such as eye gaze so they can independently respond to test items. The purpose of this study is to develop a contextualized understanding of the factors that influenced clinicians' implementation of the C-BILLT in practice in the Netherlands and Norway. MATERIALS AND METHODS: A qualitative approach including semi-structured individual interviews with 15 clinicians (speech-language pathologists, neuropsychologists, and one teacher, counsellor, and vision specialist) was used. Data analysis was conducted in two rounds. First, a deductive approach including a codebook was used to code data within the COM-B components describing clinicians' capability, opportunity, and motivation for behaviour change. Then, an abductive approach applying thematic analysis was used to identify meaningful patterns within the COM-B components. RESULTS: Several meaningful barriers and facilitators were identified across the data. Clinicians used the C-BiLLT with two distinct groups of clients: (1) the population it was originally developed for, and (2) clients that could have also been assessed using a traditional language test. Clinicians working with the first group experienced more, and more complex barriers across all COM-B components, to successful C-BiLLT use than the latter. CONCLUSION: This study provides timely insights into the capability, opportunity, and motivation factors important for creating and sustaining assessment behaviour change in clinicians who used or attempted to use the C-BiLLT. Potential tailored intervention strategies aimed at improving implementation of novel assessment tools are discussed and may be helpful for others working to improve service delivery for children with complex needs.

Mental-Physical Multimorbidity in Youth: Associations with Individual, Family, and Health Service Use Outcomes.

Prevalence, correlates, and outcomes of youth with comorbid mental and physical conditions (i.e., multimorbidity) were examined in this cross-sectional study. Participants were 92 youth (14.5 years [SD 2.7]; 69.6% female) and their parents. Mental disorder was assessed using structured interviews and physical health using a standardized questionnaire. Twenty-five percent of youth had multimorbidity and no child or parent demographic or health characteristics were correlated with multimorbidity. Youth with multimorbidity reported similar quality of life and better family functioning [B = - 4.80 (- 8.77, - 0.83)] compared to youth with mental disorder only (i.e., non-multimorbid). Youth with multimorbidity had lower odds of receiving inpatient services [OR = 0.20 (0.05, 0.85)] and shorter stays in hospital for their mental health [OR = 0.74 (0.57, 0.91)] over the past year. Family functioning was found to mediate the association between youth multimorbidity and length of stay [αß = 0.14 (0.01, 0.27)]. Findings reinforce the need for family-centered youth mental health care.

"If I had been given that information back then": An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood.

BACKGROUND: Young people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. METHOD: The methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1-hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. RESULTS: Three themes emerged: (a) "Recognizing and supporting information needs," which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) "Getting creative," which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) "Gaps and advice for the future," which highlighted the need for real-life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. CONCLUSION: Clinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real-life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers.

Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities.

BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth with disabilities and their families. The objective of this narrative review is to reflect on the work conducted by CanChild researchers, in collaboration with stakeholders, about transitions to adulthood for youth and young adults with disabilities since the publication of the best practice guidelines in 2009. METHODS: A narrative review was undertaken through a reflective approach to critically review and summarize all the transition studies completed at CanChild since 2009. The following data were systematically extracted from articles and research reports: study (authors and year of publication), purpose, methods, sample, and lessons learned. RESULTS: Five studies were identified. An analysis of the findings revealed five key themes that represented lessons learned since the publication of the Ontario-based best practice guidelines: promoting a noncategorical and lifecourse approach to care; active collaboration among stakeholders involved in transition; capacity building through peer mentorship; greater understanding of the significance of opportunities and experiences; as well as the significance of information, education, and research. CONCLUSIONS: This is the first review to provide perspective on trends in transition research since the publication of the best practice guidelines in 2009. It is hoped that this reflection will assist in the ongoing work of researchers, service providers, policy makers, communities, and families in the area of adult transitions for youth with disabilities.

Differences in health, participation and life satisfaction outcomes in adults following paediatric- versus adult-sustained spinal cord injury.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To compare differences in self-reported health status, participation and life satisfaction outcomes between adults with a spinal cord injury (SCI) sustained during paediatric (P) versus adulthood (A) years. SETTING: Ontario, Canada. METHODS: Secondary analysis of data from the Study of Health and Activity in People with SCI. Eighty-seven participants who sustained an SCI prior to age 19 (M±s.e.=25±1.5 years postinjury (YPI)) were matched for lesion level (C2-L5), severity (complete/incomplete), gender, age, education and ethnicity with 87 participants who sustained an SCI at ⩾age 19 years (MYPI=12.8±1.1). RESULTS: Those with a paediatric SCI reported significantly less pain, fewer visits to the physician in the past year, greater functional independence, social participation, occupational participation and minutes per day of moderate-to-vigorous physical activity than those who sustained an SCI in adulthood. No significant differences were found for the measures of depression, perceived health status or life satisfaction (P>0.05). With the exception of moderate-to-vigorous physical activity and visits to the physician in the past year, between-group differences were independent of YPI. CONCLUSIONS: Regardless of time since injury, people who sustained a paediatric SCI reported better health and greater participation than those injured in adulthood. Nevertheless, both groups scored well below able-bodied normative values for all measures. The results highlight the importance of a comprehensive life-course approach to SCI rehabilitation, irrespective of age at the time of injury.

You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management.

BACKGROUND: Recent evidence suggests that fostering strategies to enable youth with chronic health conditions to work towards gradual self-management of their health is key in successful transition to adult healthcare. To date, there is limited research on self-management promotion for youth. The purpose of this study is to explore self-management from the perspectives of youth, parents and healthcare providers in transition to adult healthcare. METHODS: Part of a larger longitudinal transition (TRACE-2009-2013) study, interpretive phenomenology was used to explore the meaning of the lived experiences and perceptions of youth, parents, and healthcare providers about transition to adult healthcare. Purposeful sampling was utilized to select youth with a range of chronic health conditions from the TRACE cohort (spanning 20 diagnoses including developmental disabilities and chronic conditions), their parents and healthcare providers. RESULTS: The emerging three themes were: increasing independence of youth; parents as safety nets and healthcare providers as enablers and collaborators. The findings indicate that the experiences of transitioning youth, parents and service providers are interconnected and interdependent. CONCLUSIONS: Results support a dynamic and developmentally appropriate approach when working with transitioning youth and parents in practice. As youth depend on parents and healthcare providers for support in taking charge of their own health, parents and healthcare providers must work together to enable youth for self-management. At a policy level, adequate funding, institutional support and accreditation incentives are recommended to allow for designated time for healthcare providers to foster self-management skills in transitioning youth and parents.

Parents' perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services.

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

Knowledge mobilization to spread awareness of the 'F-words' in childhood disability: lessons from a family-researcher partnership.

BACKGROUND: In 2012, two CanChild researchers published an article in Child: Care, Health and Development titled 'The "F-words" in childhood disability: I swear this is how we should think!' Building on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework, the article featured key strengths-based ICF themes (i.e. the 'F-words' - Function, Family, Fitness, Fun, Friends and Future). This paper reports on a knowledge mobilization initiative designed to spread awareness of the 'F-words' ideas. METHODS: Families and researchers collaborated to develop, disseminate and evaluate an online awareness video. The video used written descriptions, parents' reflections and their pictures, music and graphics to captivate the audience. Posted on the CanChild website in May 2014, information about the video was distributed via various dissemination strategies and evaluated by tracking its views and through an online survey. RESULTS: After a 2-month evaluation, there were 715 views and 137 survey responses. Of the survey responses, 89% lived in Canada, 55% had not previously heard of the 'F-words', 98% 'extremely liked'/'liked the ideas' and 88% indicated they would share the video. CONCLUSIONS: By creating a short and captivating video, we were able to spread awareness to a wide audience in a short period of time. Engaging families throughout the project was critical to the success of the video. By working together, we hope to continue bridging research and practice and moving the 'F-words' concepts forward one 'word' at a time.

Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q.

AIM: To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years. BACKGROUND: There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care. METHODS: Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at McMaster Children's Hospital (Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION-Q. Rasch measurement theory (RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted. RESULTS: The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION-Q scores than did participants who disagreed. CONCLUSIONS: The TRANSITION-Q is a short, clinically meaningful and psychometrically sound scale. This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition.

Descriptive data on cardiovascular and metabolic risk factors in ambulatory and non-ambulatory adults with cerebral palsy.

Forty-two participants with cerebral palsy were recruited for a study examining traditional and novel indicators of cardiovascular risk (McPhee et al., 2015 [1]). Data pertaining to the prevalence of obesity, smoking, hypertension, and metabolic risk are provided. These data are presented along with the scoring methods used in evaluation of the study participants. Percentages are included for comparative purposes with the existing literature.

Assessment of family needs in children with physical disabilities: development of a family needs inventory.

BACKGROUND: Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS: Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS: The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION: Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.

Parents' experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review.

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.

Assessment of environmental factors in disabled children 2-12 years: development and reliability of the Craig Hospital Inventory of Environmental Factors (CHIEF) for Children-Parent Version.

BACKGROUND: Children with disabilities and their families experience environmental barriers in the school and community environments. There is a need to understand and appropriately measure environmental factors that influence activity and participation for disabled children. The purpose of this paper is to describe the adaptation process of the Craig Hospital Inventory of Environmental Factors (CHIEF) to make it suitable as a parent proxy measure for disabled children aged 2-12 years. METHODS: The adaptation process consisted of four steps using data from previous research conducted at CanChild: (i) analysis of item-total correlations from all items on the CHIEF; (ii) frequency of endorsement; (iii) determination of the representativeness of the questions; and (iv) correlations on selected items. Once the items were selected, a test-retest reliability study was conducted. RESULTS: The internal consistencies (α) for the time 1 and time 2 administrations were 0.76 and 0.78, respectively. Test-retest reliability of the questionnaire was ICC = 0.73 for the total product score. CONCLUSION: The 10-item CHIEF for Children-Parent Version is an acceptable, easy-to-complete and reliable measure of perceived environmental barriers for disabled children 2-12 years of age.

Development of an outcome measurement system for service planning for children and youth with special needs.

AIM: This study described the process used in developing an outcome measurement framework for system planning to improve services for children and youth with special needs and their families in a Canadian province. The study reports the results of several parent-completed measures, which would be useful in service planning as well as the acceptability and utility of these measures for use by families and service centres. METHODS/RESULTS: Development of a theoretical framework, consultation with key stakeholders, testing the utility of selected outcome measures and initial dissemination of results were critical elements in the successful development of an outcome system. Consultation with stakeholders confirmed use of the International Classification of Functioning, Disability and Health and the child-within-family-within community model as theoretical frameworks while building valuable partnerships and identifying potential barriers to implementation. Pilot testing showed three outcome measures were feasible for families to complete and the measures provided information about services for children that was valuable to families as well as service providers. Gaps in service delivery were identified and the need for better communication between service providers and communities to facilitate integrated services was highlighted. CONCLUSION: The findings from this study can be used to implement an outcome measurement system for children with special needs and may serve as a resource for international researchers who are working to develop valid tools as well as outcome systems that are useful for system planning.

Diagnostic shortfalls in early childhood chronic stress: a review of the issues.

Clinical effects of early childhood chronic stress should be regarded as causing a developmental brain injury. However, current diagnostic constructs fail to capture the associated disabilities in emotional-behavioural regulation of stress and attachment functions adequately. We first focus on neglect as a prototypical early childhood chronic stressor; next we explore clinical associations of neglect; and finally we cite research pertaining to possible underlying pathophysiology of the effects of early childhood chronic stress. In addition, we discuss diagnostic labels that children with histories of early childhood neglect commonly acquire, and implications for treatment.