Collaborative working in speech and language therapy for children with DLD-What are parents' needs?

BACKGROUND: Collaborative practice between therapists and parents is a key element of family-centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate collaboration, collaborative practices need to be implemented into speech and language therapy for young children with developmental language disorders (DLD) and their families. Actual change and implementation of collaboration in practice will be successful only when it corresponds with patients' needs, in our case the needs of parents of young children with DLD. AIMS: To explore parents' needs in their collaboration with SLTs during therapy for their young child with DLD. METHODS & PROCEDURES: Parents of children with (a risk of) DLD in the age of 2-6 years were eligible for participation. We recruited parents via SLTs. Twelve parents of children with DLD participated in semi-structured interviews about their needs in collaboration with SLTs. We used a phenomenological approach focusing on parents' lived experiences. We transcribed the interviews verbatim. All interviews were read/listened to and discussed by our parent panel, multiple researchers and the interviewer. Two researchers independently analysed the data using the reflective thematic analysis of Braun and Clarke. OUTCOMES & RESULTS: The analysis of the interviews resulted in six themes: (1) knowing what to expect, (2) knowing how to contribute, (3) feeling capable of supporting the child, (4) trusting the therapist, (5) alignment with parents and children's needs, preferences and priorities and (6) time and space for asking questions and sharing information. CONCLUSIONS & IMPLICATIONS: Parents want SLTs to invest time in collaborating with them. Parents need SLTs to empower them to become a collaborative partner and enable them to support their child in daily life. Parents need knowledge about the therapy process and diagnosis and skills in how to support their child's language development. Also, they need emotional support to feel secure enough to support their child, to ask questions to therapists and to bring up their own thoughts and opinions in therapy. Parents' needs are in line with collaborative working as described in literature, which underlines the importance of implementing collaborative working in speech and language therapy for young children with DLD. WHAT THIS PAPER ADDS: What is already known on the subject Several reviews have explored parents' perspectives on speech and language therapy. Results reveal parents' experiences with speech and language therapy in general, and parents' perspectives on specific topics such as shared decision-making and parents/therapists roles in therapy. What this study adds This study adds insights into parents' needs to ensure collaboration with speech and language therapists (SLTs). Parents of young children with developmental language disorders (DLD) need SLTs to invest time to create optimal collaboration. It is important for parents to have enough knowledge about DLD and the SLT process, skills and confidence in how to support their child and opportunities to share thoughts and questions with SLTs. Our results underline the importance of parents being empowered by SLTs to become a collaborative partner. What are the clinical implications of this work? When children are referred to speech and language therapy, parents often venture into an unknown journey. They need support from SLTs to become a collaborative partner in speech and language therapy. Parents need SLTs to invest time in sharing knowledge, skills and power and align therapy to parents' and child's needs, preferences, priorities and expectations.

Collaboration: How does it work according to therapists and parents of young children? A systematic review.

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.

Using a behavior change toolkit in pediatric physical therapy to support physical activity: A feasibility study.

INTRODUCTION: Physical activity levels of children with disabilities are low, as these children and their parents face a wide variety of both personal and environmental barriers. Behavior change techniques support pediatric physical therapists to address these barriers together with parents and children. We developed the What Moves You?! intervention Toolkit (WMY Toolkit) filled with behavioral change tools for use in pediatric physical therapy practice. OBJECTIVE: To evaluate the feasibility of using the WMY Toolkit in daily pediatric physical therapy practice. METHODS: We conducted a feasibility study with a qualitative approach using semi-structured interviews with pediatric physical therapists (n = 11). After one day of training, the pediatric physical therapists used the WMY Toolkit for a period of 9 weeks, when facilitating physical activity in children with disabilities. We analyzed the transcripts using an inductive thematic analysis followed by a deductive analysis using a feasibility framework. RESULTS: For acceptability, pediatric physical therapists found that the toolkit facilitated conversation about physical activity in a creative and playful manner. The working mechanisms identified were in line with the intended working mechanisms during development of the WMY Toolkit, such as focusing on problem solving, self-efficacy and independence. For demand, the pediatric physical therapists mentioned that they were able to use the WMY Toolkit in children with and without disabilities with a broad range of physical activity goals. For implementation, education is important as pediatric physical therapists expressed the need to have sufficient knowledge and to feel confident using the toolkit. For practicality, pediatric physical therapists were positive about the ease of which tools could be adapted for individual children. Some of the design and materials of the toolkit needed attention due to fragility and hygiene. CONCLUSION: The WMY Toolkit is a promising and innovative way to integrate behavior change techniques into pediatric physical therapy practice.

Barriers and Facilitators to the Acceptance of eHealth Interventions by Dutch Pediatric Physical Therapists in Times of the COVID-19 Pandemic: A Mixed-Methods Approach.

BACKGROUND: The COVID-19 pandemic created an urgent need for eHealth as the relevance of infection control and social distancing continues. Evidence describing the acceptability of implementing eHealth into pediatric physical therapy services is limited. PURPOSE: To investigate the determinants of eHealth acceptance by Dutch pediatric physical therapists during the COVID-19 pandemic. METHODS: A mixed-methods approach was used. It included a quantitative exploratory questionnaire of 154 pediatric physical therapists and qualitative in-depth interviews of 16 pediatric physical therapists. RESULTS: The eHealth interventions were beneficial for collaboration between health care professionals and in addition to face-to-face therapy. eHealth interventions were, however, found to be unsuitable especially in the diagnostic phase. Barriers to more extensive application include costs, technical difficulties, and a perceived negative attitude of children. CONCLUSION: Pediatric physical therapists used eHealth interventions extensively in times of the COVID-19 pandemic. However, the acceptance of eHealth interventions is dependent on the pediatric physical therapist's perception of usefulness in private practice, rehabilitation setting, or clinical hospital.

Using a Co-design Approach to Create Tools to Facilitate Physical Activity in Children With Physical Disabilities.

Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6-12 years). Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process-together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity. Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting. Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.

Determinants of physical activity in young wheelchair-user with spina bifida.

OBJECTIVE: To explore associations between physical activity and peak oxygen uptake (VO2peak), age, sex, and Hoffer classification in young wheelchair-users with spina bifida. DESIGN: Exploratory study. SUBJECTS: Fifty-three dutch children (age 5-19 years) with spina bifida who use a manual wheelchair. METHODS: For the dependent variable physical activity, data from 2 physical activity monitors were analysed: VitaMove data for 34 participants and Actiheart data for 36 participants. Time sedentary, time physically active, and time in moderate to vigorous physical activity were analysed. The Wheelchair Shuttle Test was used to measure VO2peak. Univariate and multivariate regression analyses were performed. Independent variables were VO2peak, age, sex, and Hoffer classification. RESULTS: Time sedentary and time physically active during a school day were influenced by age (ß=0.326/ß=-0.320) and Hoffer classification (ß=0.409/ß=-0.534) and during a weekend day by Hoffer classification (ß=0.617/ß=-0.428). Time in moderate to vigorous physical activity was influenced by Hoffer classification (ß=-0.527) during a school day and by age (ß=-0.600) during a weekend day. CONCLUSION: Older age and the inability to walk negatively influence physical activity. Sex and VO2peak were not associated with physical activity. These results imply that increasing cardiorespiratory fitness alone will not improve physical activity in young wheelchair-users with spina bifida.

6-Minute Push Test in Youth Who Have Spina Bifida and Who Self-Propel a Wheelchair: Reliability and Physiologic Response.

OBJECTIVE: Despite the common occurrence of lower levels of physical activity and physical fitness in youth with spina bifida (SB) who use a wheelchair, there are very few tests available to measure and assess these levels. The purpose of this study was to determine reliability and the physiologic response of the 6-minute push test (6MPT) in youth with SB who self-propel a wheelchair. METHODS: In this reliability and observational study, a sample of 53 youth with SB (5-19 years old; mean age = 13 years 7 months; 32 boys and 21 girls) who used a wheelchair performed 2 exercise tests: the 6MPT and shuttle ride test. Heart rate, minute ventilation, respiratory exchange ratio, and oxygen consumption were measured using a calibrated mobile gas analysis system and a heart rate monitor. For reliability, intraclass correlation coefficients (ICCs), SE of measurement, smallest detectable change for total covered distance, minute work, and heart rate were calculated. Physiologic response during the 6MPT was expressed as percentage of maximal values achieved during the shuttle ride test. RESULTS: The ICCs for total distance and minute work were excellent (0.95 and 0.97, respectively), and the ICC for heart rate was good (0.81). The physiologic response during the 6MPT was 85% to 89% of maximal values, except for minute ventilation (70.6%). CONCLUSIONS: For most youth with SB who use a wheelchair for mobility or sports participation, the 6MPT is a reliable, functional performance test on a vigorous level of exercise. IMPACT: This is the first study to investigate physiologic response during the 6MPT in youth (with SB) who are wheelchair using. Clinicians can use the 6MPT to evaluate functional performance and help design effective exercise programs for youth with SB who are wheelchair using.

Physical activity and sedentary behaviour in children with spina bifida.

AIM: To describe active and sedentary time in children with spina bifida and to compare their physical activity on weekdays versus weekends. METHOD: In this exploratory cross-sectional study, data from 13 Canadian and 22 Dutch children with spina bifida (14 females, 21 males; mean age 10y 11mo, standard deviation [SD] 3y 6mo, range 5y 6mo-18y; Hoffer classification distribution: community [n=28], household [n=3], non-functional [n=3], and non-ambulator [n=1]) were analysed. Objective measures of physical activity and sedentary behaviour were obtained by using ActiGraph or Actiheart activity monitors. Data for the participants wearing the ActiGraph were compared with age- and sex-matched controls that were developing typically using independent-samples t-tests. Activity data collected on weekdays was compared to those on weekends. RESULTS: ActiGraph data demonstrated children with spina bifida spent more time sedentary (mean [SD] 49.5min/h [5.78]) and less time in moderate to vigorous physical activity (mean [SD] 2.33min/h [1.61]) compared with the typically developing group (mean [SD] 41.0min/h [5.76] and 5.46min/h [2.13], p=0.001 and p<0.001 respectively). For both ActiGraph- and Actiheart-derived data, physical activity and sedentary time were not significantly different between weekdays and weekends. INTERPRETATION: Children with spina bifida have reduced levels of physical activity and increased sedentary behaviour, with no statistical differences seen between weekdays and weekends. Several methodological issues related to activity monitoring warrant consideration when choosing the appropriate method to quantify physical activity and sedentary behaviour. WHAT THIS PAPER ADDS: Reduced levels of physical activity and sedentary time were quantified in children with spina bifida. Objective quantification of physical behaviour in ambulatory and non-ambulatory school-aged children with spina bifida is possible.

ACTIVIDAD FÍSICA Y COMPORTAMIENTO SEDENTARIO EN NIÑOS CON ESPINA BÍFIDA: OBJETIVO: Describir el tiempo activo y sedentario en niños con espina bífida y comparar su actividad física entre semana y fines de semana. MÉTODO: En este estudio exploratorio de corte transversal, datos de 13 niños canadienses y 22 holandeses con espina bífida (14 mujeres, 21 varones; edad media 10 años 11 meses, desviación estándar [DE] 3 años 6 meses, rango 5 años 6 meses - 18 años; se analizaron en base a la distribución basada en la clasificación de Hoffer: comunidad [n = 28], hogar [n = 3], no funcional [n = 3] y no ambulatorios [n = 1]). Se obtuvieron medidas objetivas de actividad física y comportamiento sedentario mediante el uso de monitores de actividad ActiGraph o Actiheart. Los datos de los participantes que usaban el ActiGraph se compararon con los niños con desarrollo típicos como controles, apareados por edad y sexo usando pruebas t de muestras independientes. Los datos de actividad recopilados durante la semana se compararon con los de los fines de semana. RESULTADOS: Los datos de ActiGraph demostraron que los niños con espina bífida pasaron más tiempo sedentarios (media [DE] 49,5min / h [5,78]) y menos tiempo en actividades físicas moderadas a intensas (media [DE] 2,33min / h [1,61]) en comparación con el grupo control (media [DE] 41,0min / h [5,76] y 5,46min / h [2,13], p = 0,001 y p <0,001 respectivamente). Tanto para los datos derivados de ActiGraph como de Actiheart, la actividad física y el tiempo sedentario no fueron significativamente diferentes entre semana y fines de semana. INTERPRETACIÓN: Los niños con espina bífida tienen niveles reducidos de actividad física y un mayor comportamiento sedentario, sin diferencias estadísticas observadas entre semana y fines de semana. Al elegir un método apropiado para cuantificar la actividad física y el comportamiento sedentario se deben considerar varios problemas metodológicos relacionados con el monitoreo de la actividad en esta población.

ATIVIDADE FÍSICA E COMPORTAMENTO SEDENTÁRIO EM CRIANÇAS COM ESPINHA BÍFIDA: OBJETIVO: Descrever o tempo ativo e sedentário de crianças com espinha bífida e comparar sua atividade física durante a semana versus fins de semana. MÉTODO: Neste estudo exploratório transversal, dados de 13 crianças canadenses e 22 crianças holandesas com espinha bífida (14 do sexo feminino, 21 do sexo masculino; médida de idade 10a 11m, desvio padrão [DP] 3a 6m, variação 5a 6m-18a; Distribuição da classificação de Hoffer: comunidade [n=28], domiciliar [n=3], não funcional [n=3], e não ambulatório [n=1]) foram analisados. Medidas objetivas de atividade física e comportamento sedentário foram obtidas por meio de monitores de atividade ActiGraph ou Actiheart. Dados para os participantes que usaram ActiGraph foram comparados com controles pareados por idade e sexo que tinha desenvolvimento típico usando testes t para amostras independentes. Dados de atividade coletados durante a semana foram comparados com os dados de finais de semana. RESULTADOS: Os dados do ActiGraph demonstraram que crianças com espinha bífida passaram mais tempo sedentário (média [DP] 49,5min/h [5,78]) e menos tempo em atividade física vigorosa (média [DP] 2,33min/h [1,61]) comparados com o grupo com desenvolvimento típico (média [DP] 41,0min/h [5,76] e 5,46min/h [2,13], p=0,001 and p<0,001 respectivamente). Para os dados derivados do ActiGraph- e Actiheart, a atividade física e o tempo sedentário não foram significativamente diferentes comparando os dias da semana com os fins de semana. INTERPRETAÇÃO: Crianças com espinha bífida têm níveis reduzidos de atividade física e comportamento sedentário aumentado, sem diferenças estatísticas quando comparados os dias da semana. Várias questões metodológicas relacionadas ao monitoramento de atividades indicam necessidade de refletir quanto à escolha do método apropriado para quantificar a ativiade física e comportamento sedentário.

Cardiopulmonary Exercise Test Using Arm Ergometry in Children With Spina Bifida: A Prediction Model for O2peak.

PURPOSE: This study aimed to develop a prediction model for peak oxygen uptake ((Equation is included in full-text article.)O2peak) in children with spina bifida (SB), considering peak workload (Wpeak), peak heart rate, age, sex, anthropometric measures, walking level, physical activity level, and level of the lesion. METHODS: Data of 26 participants with SB performing a graded arm crank test were used to develop the prediction model. An unrelated data set of participants with SB was used for validation. RESULTS: The following equation was developed to predict (Equation is included in full-text article.)O2peak of participants with SB: (Equation is included in full-text article.)O2peak (mL/min) = 194+18 × Wpeak - 110 × sex (adjusted R(2) = 0.933, SEE = 96 mL/min). Bland-Altman analysis showed a nonsignificant mean difference between the measured and predicted values of (Equation is included in full-text article.)O2peak (-0.09 L/min) and limits of agreement of -0.4036 and 0.2236 L/min. CONCLUSIONS: The prediction model shows promising results; however, further validation using the same protocol is warranted before implementation in clinical practice.

Physical activity in wheelchair-using youth with spina bifida: an observational study.

BACKGROUND: Even though typically developing youth are already at risk for physical inactivity, youth with spina bifida may be even at higher risk as a consequence of their reduced mobility. No objective data is available for youth with spina bifida who use a manual wheelchair, so the seriousness of the problem is unknown. The purpose of this observational study was to quantify physical activity in wheelchair-using youth with spina bifida and evaluate the intensity of activities. METHODS: Fifty-three children and adolescents (5-19 years) with spina bifida who use a manual wheelchair for daily life, long distances or sports were included. To assess time spent in several types of activities VitaMove data of 34 participants were used and were presented as time spent sedentary and time spent physically active. This was compared to reference data of typically developing youth. To assess time spent in several intensities Actiheart data of 36 participants were used. The intensities were categorized according to the American College of Sports Medicine, ranging from very light intensity to near to maximal intensity. Data of 25 participants were used to combine type of activity and intensity. RESULTS: Children and adolescents with spina bifida who use a manual wheelchair were more sedentary (94.3% versus 78.0% per 24 h, p < 0.000) and less physically active (5.0% versus 12.2% per 24 h, p < 0.000) compared to typically developing peers. Physical activity during weekend days was worse compared to school days; 19% met the Guidelines of Physical Activity during school days and 8% during weekend days. The intensities per activity varied extensively between participants. CONCLUSIONS: Children and adolescents with spina bifida who use a manual wheelchair are less physically active and more sedentary than typically developing youth. The physical activity levels on school days seem to be more favorable than the physical activity levels on a weekend day. The low levels of physical activity need our attention in pediatric rehabilitation practice. The different intensities during activities indicate the importance of individually tailored assessments and interventions.

Wheelchair Shuttle Test for Assessing Aerobic Fitness in Youth With Spina Bifida: Validity and Reliability.

Background: Testing aerobic fitness in youth is important because of expected relationships with health. Objective: The purpose of the study was to estimate the validity and reliability of the Shuttle Ride Test in youth who have spina bifida and use a wheelchair for mobility and sport. Design: Ths study is a validity and reliability study. Methods: The Shuttle Ride Test, Graded Wheelchair Propulsion Test, and skill-related fitness tests were administered to 33 participants for the validity study (age = 14.5 ± 3.1 y) and to 28 participants for the reliability study (age = 14.7 ± 3.3 y). Results: No significant differences were found between the Graded Wheelchair Propulsion Test and the Shuttle Ride Test for most cardiorespiratory responses. Correlations between the Graded Wheelchair Propulsion Test and the Shuttle Ride Test were moderate to high (r = .55-.97). The variance in peak oxygen uptake (VO2peak) could be predicted for 77% of the participants by height, number of shuttles completed, and weight, with large prediction intervals. High correlations were found between number of shuttles completed and skill-related fitness tests (CI = .73 to -.92). Intraclass correlation coefficients were high (.77-.98), with a smallest detectable change of 1.5 for number of shuttles completed and with coefficients of variation of 6.2% and 6.4% for absolute VO2peak and relative VO2peak, respectively. Conclusions: When measuring VO2peak directly by using a mobile gas analysis system, the Shuttle Ride Test is highly valid for testing VO2peak in youth who have spina bifida and use a wheelchair for mobility and sport. The outcome measure of number of shuttles represents aerobic fitness and is also highly correlated with both anaerobic performance and agility. It is not possible to predict VO2peak accurately by using the number of shuttles completed. Moreover, the Shuttle Ride Test is highly reliable in youth with spina bifida, with a good smallest detectable change for the number of shuttles completed.

Evidence for increasing physical activity in children with physical disabilities: a systematic review.

AIM: To summarize the best evidence of interventions for increasing physical activity in children with physical disabilities. METHOD: A systematic review was conducted using an electronic search executed in Academic Search Elite, Academic Search Premier, CINAHL, Embase, MEDLINE, PEDro, PsychINFO, and SPORTDiscus up to February 2016. The selection of articles was performed independently by two researchers according to predetermined eligibility criteria. Data extraction, methodological quality, and levels of evidence were independently assessed by two researchers using a data-collection form from the Cochrane Collaboration and according to the guidelines of the American Academy for Cerebral Palsy and Developmental Medicine. RESULTS: Seven studies were included. Five randomized controlled trials ranged from strong level I to weak level II studies, and two pre-post design studies were classified as level IV. There is level I evidence for no effect of physical training on objectively measured physical activity, conflicting level II evidence for interventions with a behavioural component on the increase of objectively measured physical activity directly after the intervention, and level II evidence for no effect during follow-up. Results are limited to children with cerebral palsy as no other diagnoses were included. INTERPRETATION: Increasing physical activity in children with physical disabilities is very complex and demands further development and research.

Validity and Reliability of Skill-Related Fitness Tests for Wheelchair-Using Youth With Spina Bifida.

OBJECTIVES: To determine content validity of the Muscle Power Sprint Test (MPST), and construct validity and reliability of the MPST, 10×5 Meter Sprint Test (10×5MST), slalom test, and One Stroke Push Test (1SPT) in wheelchair-using youth with spina bifida (SB). DESIGN: Clinimetric study. SETTING: Rehabilitation centers, SB outpatient services, and private practices. PARTICIPANTS: A convenience sample of children and adolescents (N=53; 32 boys, 21 girls; age range, 5-19y) with SB who use a manual wheelchair. Participants were recruited through rehabilitation centers, SB outpatient services, pediatric physical therapists, and the BOSK (Association of Physically Disabled Persons and their Parents). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Construct validity of the MPST was determined by comparing results with the arm-cranking Wingate Anaerobic Test (WAnT) using paired t tests and Pearson correlation coefficients, while content validity was assessed using time-based criteria for anaerobic testing. Construct validity of the 10×5MST, slalom test, and 1SPT was analyzed by hypothesis testing using Pearson correlation coefficients and multiple regression. For reliability, intraclass correlation coefficients (ICCs) and smallest detectable changes (SDCs) were calculated. RESULTS: For the MPST, the mean ± SD exercise time of 4 sprints was 28.1±6.6 seconds. Correlations between the MPST and arm-cranking WAnT were high (r>.72, P<.01). Excellent correlations were found between the 10×5MST and slalom test (r=.93, P<.01), while correlations between the 10×5MST or slalom test and MPST and 1SPT were moderate (r=-.56 to -.70; r=.56, P<.01). The variation of the 1SPT was explained for 38% by wheelchair mass (ß=-.489) and total upper muscle strength (ß=.420). All ICCs were excellent (ICCs>.95), but the SDCs varied widely. CONCLUSIONS: The MPST is a valid and reliable test in wheelchair-using youth with SB for measuring anaerobic performance. The 10×5MST and slalom test are valid and reliable for measuring agility. For the 1SPT, both validity and reliability are questionable.

Personal and environmental factors to consider when aiming to improve participation in physical activity in children with Spina Bifida: a qualitative study.

BACKGROUND: Youth with spina bifida (SB) are less fit and active than other groups with childhood disability. While recent studies have shown benefits of exercise training, the increased fitness levels do not sustain or lead to increased levels of physical activity (PA) in these children. Therefore, it seems important to explore which factors are associated with participation in PA (or lack of) in youth with SB. The objective of this study is to describe both personal and environmental factors that are important for participation in physical activity as experienced by these children and their parents, in order to better develop intervention strategies to improve participation in PA in youth with SB. METHODS: Eleven semi-structured interviews with parents of children with SB aged 4-7 years, nine focus groups with youth with SB (n = 33, age 8-18 years) and eight focus groups with their parents (n = 31) were conducted, recorded and transcribed verbatim. Two independent researchers analyzed the data. Central themes for physical activity were constructed, using the model for Physical Activity for Persons with a Disability (PAD model) as a background scheme. RESULTS: Data showed that youth with SB encountered both personal and environmental factors associated with participation in PA on all levels of the PAD model. Bowel and bladder care, competence in skills, sufficient fitness, medical events and self-efficacy were important personal factors. Environmental factors that were associated with physical activity included the contact with and support from other people, the use of assistive devices for mobility and care, adequate information regarding possibilities for adapted sports and accessibility of playgrounds and sports facilities. CONCLUSIONS: Our findings suggest that a variety of both personal and environmental factors were either positively or negatively associated with participation in PA. An individual approach, assessing possibilities rather than overcoming barriers within and surrounding the child may be a good starting point when setting up intervention programs to improve participation in PA. Therefore, assessment of both personal and environmental factors associated with physical activity should be standard care within multidisciplinary intervention programs aimed to encourage healthy active lifestyles in youth with SB.

Arm cranking versus wheelchair propulsion for testing aerobic fitness in children with spina bifida who are wheelchair dependent.

OBJECTIVE: To determine the best test performance and feasibility using a Graded Arm Cranking Test vs a Graded Wheelchair Propulsion Test in young people with spina bifida who use a wheelchair, and to determine the reliability of the best test. DESIGN: Validity and reliability study. SUBJECTS: Young people with spina bifida who use a wheelchair. METHODS: Physiological responses were measured during a Graded Arm Cranking Test and a Graded Wheelchair Propulsion Test using a heart rate monitor and calibrated mobile gas analysis system (Cortex Metamax). For validity, peak oxygen uptake (VO2peak) and peak heart rate (HRpeak) were compared using paired t-tests. For reliability, the intra-class correlation coefficients, standard error of measurement, and standard detectable change were calculated. RESULTS: VO2peak and HRpeak were higher during wheelchair propulsion compared with arm cranking (23.1 vs 19.5 ml/kg/min, p = 0.11; 165 vs 150 beats/min, p < 0.05). Reliability of wheelchair propulsion showed high intra-class correlation coefficients (ICCs) for both VO2peak (ICC = 0.93) and HRpeak (ICC = 0.90). CONCLUSION: This pilot study shows higher HRpeak and a tendency to higher VO2peak in young people with spina bifida who are using a wheelchair when tested during wheelchair propulsion compared with arm cranking. Wheelchair propulsion showed good reliability. We recommend performing a wheelchair propulsion test for aerobic fitness testing in this population.

Factors associated with physical activity in children and adolescents with a physical disability: a systematic review.

AIM: The aim of this review was to summarize the important factors associated with participation in physical activity in children and adolescents with physical disabilities. METHOD: A systematic mixed-studies review was conducted using the databases Academic Search Elite, CINAHL, The Cochrane Library, EMBASE, PEDro, PsycINFO, PubMed, and SPORTDiscus, searching for studies conducted from January 2000 to May 2013. The studies were identified by two independent researchers following predetermined inclusion and exclusion criteria. The methodological quality was determined using the McMaster University critical review forms for qualitative or quantitative research and was numerically rated according to the criteria developed by Imms. RESULTS: The initial electronic search yielded 10 161 articles, of which six were qualitative and 12 were quantitative studies. These studies showed that a diverse range of positive and negative factors were associated with participation in physical activity, such as self-efficacy, physical fitness, increasing age, and the availability of equipment and local facilities. INTERPRETATION: Future intervention studies could use these results, within the context of an individual child and his or her environment, as the basis for increasing physical activity levels, starting in early childhood and continuing throughout adolescence and into adulthood. An increased awareness of and focus on providing appropriate equipment and adapted sports in the child's own environment by policy makers might increase physical activity levels.

Reference values for anaerobic performance and agility in ambulatory children and adolescents with cerebral palsy.

AIM: the aim of this study was to provide reference values of anaerobic performance and agility in a group of children and adolescents with spastic cerebral palsy (CP). METHOD: a total of 300 children (184 males, 116 females) with spastic CP were recruited from 26 rehabilitation centres in six different countries. Of these, 215 were classified at GMFCS level I (mean age 11y 2mo, SD 3y, range 6-18y) and 85 were classified at GMFCS level II (mean age 11y; SD 3y 1mo, range 6-18y). The children performed the Muscle Power Sprint Test (MPST) and the 10×5m sprint test in a standardized manner. To establish reference values, reference curves were created using generalized additive models for location, scale, and shape. RESULTS: height-related reference curves were created based on performance on the two tests. INTERPRETATION: this study provides height-related reference values for anaerobic performance and agility for children and adolescents with CP classified at GMFCS levels I and II. These curves are clinically relevant and provide a user-friendly method in the interpretation of anaerobic performance and agility for children with spastic CP.

Reference values for aerobic fitness in children, adolescents, and young adults who have cerebral palsy and are ambulatory.

BACKGROUND: Very few objective data exist regarding aerobic performance in young people with cerebral palsy (CP). The characterization of aerobic fitness could provide baseline and outcome measures for the rehabilitation of young people with CP. OBJECTIVE: The objective of this study was to provide reference values for aerobic fitness in a group of children, adolescents, and young adults who had CP and who were classified at Gross Motor Function Classification System (GMFCS) level I or II. Data were collected with 10-m shuttle run tests. DESIGN: This investigation was a cross-sectional observational study conducted between August 2008 and June 2009. METHODS: Reference values were established using data from a total of 306 children, adolescents, and young adults who had CP, who were 6 to 20 years old, and who were recruited from 26 rehabilitation centers in the Netherlands, Switzerland, Australia, Canada, and the United States. A total of 211 participants were classified at GMFCS level I (mean age=12.2 years, SD=3.0), and 95 were classified at GMFCS level II (mean age=12.4 years, SD=3.2); 181 were male, and 125 were female. Aerobic fitness was reflected by the level achieved on the 10-m shuttle run tests. RESULTS: On the basis of a total of 306 assessments from the 10-m shuttle run tests, 4 reference curves were created. LIMITATIONS: The limitation of this study is the cross-sectional nature of the design. CONCLUSIONS: This study provided height-related reference values for aerobic fitness in children, adolescents, and young adults who had CP, who were 6 to 20 years old, and who were classified at GMFCS level I or II. Generalized additive models for location, scale, and shape were used to construct centile curves. These curves are clinically relevant and provide a user-friendly method for the prediction of aerobic fitness in young people with CP.