Using the capability, opportunity, and motivation model of behaviour to assess provider perception of implementing solution-focused goal-setting in paediatric rehabilitation.

Adoption of family and child goal-setting in paediatric rehabilitation is important to positive long-term outcomes. Solution-focused coaching (SFC) has been identified as a promising approach to ensuring this type of goal-setting occurs, while the actual implementation of SFC by health care providers (HCPs) is low. This study utilized the capacity, opportunity, and motivation model of behaviour change (COM-B) to identify which strengths and difficulties health care providers (HCPs) perceived with respect to SFC goal-setting in paediatric rehabilitation. A self-report survey was developed and administered to HCPs at a paediatric rehabilitation hospital. Each survey question was based upon a COM-B sub-component. Demographic information was collected from HCPs, and descriptive statistics were used to rank perceived COM-B components from strongest to weakest. Results indicate HCPs view the provision of SFC goal-setting as an important practice, while they also perceive difficulties to actual delivery due to: lack of adequate individual skill, lack of experience with this type of goal-setting, and insufficient preparation for clients to engage in sharing their goals. HCPs also perceived lack of organizational processes to support the practice within their teams. Recommendations for intervention are provided.

Facilitators and barriers to patient-centred goal-setting in rehabilitation: A scoping review.

OBJECTIVE: Identify, map, and synthesize existing reviews, to extract and analyse the most prominent barriers and facilitators to applying patient-centred goal-setting practice in rehabilitation using the Capability, Opportunity Motivation Behaviour (COM-B) model. DESIGN: Scoping review. DATA SOURCE: A primary search was conducted in MEDLINE, CINAHL, EMBASE, PsychInfo, and Cochrane. Citation chaining was employed. REVIEW METHODS: All types of review (systematic, scoping, and narrative) studies published up to June 14, 2022 that included physical and neurological rehabilitation, patient-centeredness, and goal-setting were reviewed. Studies were scrutinized for relevance, quality was not assessed. The most prominent barriers and facilitators were synthesized using thematic content analysis and mapped onto the COM-B model. RESULTS: Twenty-six review studies covering a range of conditions and settings, acute to community were included. Barrier and facilitators were identified at patient, provider, and organizational level. Barrier themes include provider's existing beliefs about goal-setting, lack of skills, and integration into clinical routines. Patient barriers related to capacity and opportunity to participate. Organizational barriers include lack of clinical guidelines, patient preparation, insufficient provider time, and high productivity expectations. Facilitators included goal-setting guidelines, training and education of providers and patients, revised clinical routines, performance monitoring, adequate time, and resources. CONCLUSION: Healthcare providers should be the primary target of intervention. A provider's motivation to change current practice is the most prominent barrier, followed closely by capacity and opportunity. Patients require information, training, and structured engagement opportunities. Organizations play a key role in creating the optimal environmental conditions to enable patient-centred goal-setting.

Optimization of fMRI methods to determine laterality of cortical activation during ankle movements of children with unilateral cerebral palsy.

Measurement of laterality of motor cortical activations may provide valuable information about lower limb control in children with unilateral cerebral palsy (UCP). Evidence from upper limb research suggests that increased contralateral activity may accompany functional gains. However, lower limb areas of activation and associated changes have been underexplored due to challenges with imaging motor cortical leg representations. In this study, methods for a task-based functional magnetic resonance imaging (fMRI) ankle dorsiflexion paradigm were refined with three pilot groups of participants: (i) adults (n = 5); (ii) typically developing (TD) children (n = 5) and; (iii) children with UCP (n = 4). Parameters of experimental design, task resistance, reproducibility, and pre-scan procedures were tested/refined using a staged development approach with additions or changes introduced if image quality did not meet pre-defined standards. When image quality was acceptable for two consecutive participants, the next participant group was recruited to test/refine the next parameter. The final paradigm involved an event-related design of a single dorsiflexion movement against individualized resistance, with two runs per leg. It included a pre-scan session to increase child comfort and determine task resistance. This paradigm produced valid data for laterality index (LI) calculations to determine the ratio of activity in each hemisphere. Ventricle and lesion masks were used in non-linear image registration, and individual thresholds were used for extent-based LI calculations. LI of dominant ankle movements were contralateral (LI ≥ +0.2) for TD children (mean LI = +0.89, std = 0.27) and children with UCP (mean LI = +0.86, std = 0.26). For the affected ankle of children with UCP, LI values indicated ipsilateral and/or contralateral activation (mean LI = +0.02, std = 0.71, range -0.92 to +1.00). This fMRI paradigm will support investigations of cortical activation and mechanisms of skill improvement following lower limb interventions.

Parents' early healthcare transition experiences with preterm and acutely ill infants: a scoping review.

BACKGROUND: Parents undergo multiple transitions following the birth of an ill infant: their infant's illness-health trajectory, neonatal intensive care unit hospitalization and transfers from one healthcare setting to another, while also transitioning to parenthood. The objective of this review was to map and synthesize evidence on the experiences and needs of parents of preterm or ill infants as they transition within and between healthcare settings following birth. METHODS: The scoping review followed Arskey and O'Malley's () framework, enhanced by Levac et al. (). Relevant studies were identified through a comprehensive search strategy of scientific and grey literature databases, online networks, Web of Science and citation lists of relevant articles. Inclusion criteria encompassed a focus on infants undergoing a healthcare transition, and the experiences and needs of parents during transition. Studies were appraised for design quality, and data relevant to parent experiences were extracted and underwent thematic analysis. RESULTS: A total of 7773 records were retrieved, 90 full texts reviewed and 11 articles synthesized that represented a total sample of 435 parents of preterm or ill infants. Parents reported on their experiences in response to their infant's transition within and between hospitals and across levels of neonatal intensive care unit, intermediate and community hospital care. Ten studies used qualitative research methods, while one employed quantitative survey methods. Four key themes were identified: that of parent distress throughout transition, parenting at a distance, sources of stress and sources of support. Parents' stress resulted from not being informed or involved in the transition decision, inadequate communication and perceived differences in cultures of care across healthcare settings. CONCLUSIONS: Opportunities to improve parents' early transition experiences include enhanced engagement, communication, information-sharing and shared decision-making between health care providers and parents. Future areas of research should focus on early transition interventions to advance parent capacity, confidence and closeness as the primary nurturer.

Botulinum toxin-A use in paediatric hypertonia: Canadian practice patterns.

BACKGROUND: This study aims to assess current practices of Canadian physicians providing botulinum toxin-A (BoNT-A) treatments for children with hypertonia and to contrast these with international "best practice" recommendations, in order to identify practice variability and opportunities for knowledge translation. METHODS: Thirteen Canadian physicians assembled to develop and analyze results of a cross-sectional electronic survey, sent to 50 physicians across Canada. RESULTS: Seventy-eight percent (39/50) of physicians completed the survey. The most frequently identified assessment tools were Gross Motor Function Classification System, Modified Tardieu Scale and neurological examination. Goal-setting tools were infrequently utilized. Common indications for BoNT-A injections and the muscles injected were identified. Significant variability was identified in using BoNT-A for hip displacement associated with hypertonia. The most frequent adverse event reported was localized weakness; 54% reporting this "occasionally" and 15% "frequently". Generalized weakness, fatigue, ptosis, diplopia, dysphagia, aspiration, respiratory distress, dysphonia and urinary incontinence were reported rarely or never. For dosage, 52% identified 16 Units/kg body weight of Botox® as maximum. A majority (64%) reported a maximum 400 Units for injection at one time. For localization, electrical stimulation and ultrasound were used infrequently (38% and 19% respectively). Distraction was the most frequently used pain-management technique (64%). CONCLUSIONS: Canadian physicians generally adhere to international best practices when using BoNT-A to treat paediatric hypertonia. Two knowledge-translation opportunities were identified: use of individualized goal setting prior to BoNT-A and enhancing localization techniques. Physicians reported a good safety profile of BoNT-A in children.

Children's and parents' beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy.

BACKGROUND: Walking for children with cerebral palsy (CP) has physiological and functional benefits, but also holds symbolic significance that largely remains unexplored. The aims of this pilot study were to describe beliefs about the value of walking held by children with CP and their parents, and to examine how these beliefs inform rehabilitation choices and perceptions of 'success'. METHODS: A critical qualitative design was employed. Six parents and six children with CP (Gross Motor Function Classification System III or IV, aged 9 to 18 years) each participated in a private interview. Analyses examined the relationship between dominant social beliefs regarding walking and participants' accounts. RESULTS: Parents' accounts revealed that all adopted a stance of doing something/trying anything as part of being a 'good parent' and maintaining hope. Tapering of walking interventions contributed to feelings of guilt and doubt. Children primarily viewed walking as exercise rather than functional. Their accounts also demonstrated how they internalized negative attitudes towards disability and judged themselves accordingly. CONCLUSIONS: The results of this pilot study provide provisional evidence regarding how dominant social values regarding walking and disability are taken up by parents and children. They suggest that rehabilitation programmes need to consider how they may unintentionally reinforce potentially harmful choices, and how best to engage families in discussions of their evolving values and treatment priorities. Further research is needed with a larger sample.

Botulinum toxin assessment, intervention and follow-up for paediatric upper limb hypertonicity: international consensus statement.

The primary objective of this paper was to evaluate the published evidence of efficacy and safety of botulinum neurotoxin (BoNT) injections in paediatric upper limb hypertonia (PULH). Secondary objectives included the provision of clinical context, based on evidence and expert opinion, in the areas of assessment, child and muscle selection, dosing, and adjunctive treatment. A multidisciplinary panel of authors systematically reviewed, abstracted, and classified relevant literature. Recommendations were based on the American Academy of Neurology (AAN) evidence classification. Following a literature search, 186 potential articles were screened for inclusion, and 15 of these met the criteria and were reviewed. Grade A evidence was found to support the use of BoNT to reach individualized therapeutic goals for PULH. There is grade B evidence (probably effective) for tone reduction following BoNT injections and grade U evidence (inconclusive) for improvement in upper limb (UL) activity and function. BoNT injections were generally found to be safe and well tolerated with the most common side effect identified as a transient decrease in grip strength.

Practice parameter: pharmacologic treatment of spasticity in children and adolescents with cerebral palsy (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.

OBJECTIVE: To evaluate published evidence of efficacy and safety of pharmacologic treatments for childhood spasticity due to cerebral palsy. METHODS: A multidisciplinary panel systematically reviewed relevant literature from 1966 to July 2008. RESULTS: For localized/segmental spasticity, botulinum toxin type A is established as an effective treatment to reduce spasticity in the upper and lower extremities. There is conflicting evidence regarding functional improvement. Botulinum toxin type A was found to be generally safe in children with cerebral palsy; however, the Food and Drug Administration is presently investigating isolated cases of generalized weakness resulting in poor outcomes. No studies that met criteria are available on the use of phenol, alcohol, or botulinum toxin type B injections. For generalized spasticity, diazepam is probably effective in reducing spasticity, but there are insufficient data on its effect on motor function and its side-effect profile. Tizanidine is possibly effective, but there are insufficient data on its effect on function and its side-effect profile. There were insufficient data on the use of dantrolene, oral baclofen, and intrathecal baclofen, and toxicity was frequently reported. RECOMMENDATIONS: For localized/segmental spasticity that warrants treatment, botulinum toxin type A should be offered as an effective and generally safe treatment (Level A). There are insufficient data to support or refute the use of phenol, alcohol, or botulinum toxin type B (Level U). For generalized spasticity that warrants treatment, diazepam should be considered for short-term treatment, with caution regarding toxicity (Level B), and tizanidine may be considered (Level C). There are insufficient data to support or refute use of dantrolene, oral baclofen, or continuous intrathecal baclofen (Level U).

Depletion and sizes of motor units in spinal muscular atrophy.

Motor unit number estimation (MUNE) was applied to the biceps brachii muscles of 13 young patients (age 5--24 years) with spinal muscular atrophy (SMA) and the results compared with those of healthy control subjects matched for age and gender. In the SMA patients, all motor unit (MU) estimates fell below the control range, and there was good correspondence between the values for the two arms in the same subject. No correlation could be found between the MUNEs and the severity of the weakness. This unexpected result was attributed to the presence of small and normal-sized MUs in the muscles of patients, in addition to MUs that appeared to be considerably enlarged. The threefold mean increase in MU potential size was insufficient to compensate for the MU loss. In addition, the study confirmed that there are, on average, approximately 130 MUs in the healthy biceps brachii muscle.

Deflazacort treatment of Duchenne muscular dystrophy.

OBJECTIVE: We report the long-term effects on muscle strength and side effects with deflazacort in Duchenne muscular dystrophy (DMD). STUDY DESIGN: Boys with DMD between the ages of 7 and 15 years were reviewed retrospectively; 30 had been treated with deflazacort, and 24 had not. Muscle function, pulmonary function, and side effects were compared. RESULTS: The boys not treated with deflazacort stopped walking at 9.8 +/-1.8 years. Seven of 30 treated boys had stopped walking at 12.3+/-2.7 years (P<.05), and of the 23 boys who were still walking, 21 were older than 10 years. Pulmonary function (percent predicted functional vital capacity) was significantly greater in treated boys at 15 years (88% +/- 18%) than in boys not treated (39%+/-20%) (P<.001). Between 9 and 15 years, treated boys were shorter. Between 9 and 13 years, treated boys weighed less. After 13 years the treated boys maintained their weight, whereas boys not treated lost weight. Asymptomatic cataracts developed in 10 of 30 boys who received deflazacort. Other potential side effects of deflazacort such as hypertension, glucosuria, acne, infection, or bruising were not more common. CONCLUSIONS: We conclude that deflazacort can preserve gross motor and pulmonary function in boys with DMD with limited side effects.

Botulinum toxin type A injections in the spastic upper extremity of children with hemiplegia: child characteristics that predict a positive outcome.

Evidence is increasing to suggest that botulinum toxin type A (BTX-A) plays a role in the management of upper extremity spasticity in the paediatric population. However, little information is available on the clinical characteristics of the child that predict a response to this intervention. Our research group previously published a randomized controlled trial demonstrating that BTX-A injection improves function of the upper extremity of children with spastic hemiplegia. In the present paper, we evaluate the child characteristics that predict a positive response to the BTX-A injections in the randomized treatment group. The treatment group was divided into positive functional responders and nonresponders using a cut score of a change of 10 points on the Quality of Upper Extremity Skills Test (QUEST). A two-way analysis of variance procedure was done comparing the following baseline characteristics: function as scored on the QUEST and the Pediatric Evaluation of Disability Inventory (PEDI) self-care domain, grip strength, upper extremity spasticity and age. Grip strength was significantly higher in responders with a P-value of 0.001. Young age approached significance with a P-value of 0.05. Correlation of change scores on the QUEST with baseline characteristics in the treatment group yielded similar results. BTX-A causes a reduction in spasticity and strength; we postulate that if the hand is weak initially, BTX-A can decrease hand function. Two case reports are presented that highlight the importance of grip strength and age.

Assessing physical disability in children with spina bifida and scoliosis.

The purpose of this study was to develop a valid and reliable questionnaire to assess physical disability related to the spine in children with spina bifida and scoliosis and their families. Eighty-eight items were generated from a review of the literature and interviews with clinicians, parents, and children with spina bifida and scoliosis. Items were reviewed by 40 children and ranked. After eliminating redundant items, the top 25 items were formatted into a self-administered questionnaire. The questionnaire, completed 2 weeks apart, demonstrated "excellent" test-retest reliability (intraclass correlation coefficient = 0.88). Construct validity was established by high correlation with a validated scale of overall disability: the Activities Scale for Kids (r = 0.86, p < 0.01) and by correlations with global assessment of function. In conclusion, the Spina Bifida Spine Questionnaire is a valid and reliable questionnaire and can be used to assess the outcomes of treatment for children with spina bifida and scoliosis.

Quality of life in spina bifida: importance of parental hope.

BACKGROUND AND AIMS: Prognosis in spina bifida (SB) is often based only on neurological deficits present at birth. We hypothesised that both parental hope and the neurophysical examination predict quality of life in children and adolescents with SB. METHODS: A previously validated disease and age specific health related quality of life (HRQL) instrument was posted to families of children (aged 5-12 years) and adolescents (aged 13-20 years) with SB. We measured parental hope, determined the child's current physical function, and obtained retrospective data on the neonatal neurophysical examination (NPE). Regression analysis modelled HRQL firstly as a dependent variable on parental hope and NPE ("birth status"); and secondly on parental hope and current physical function ("current function"). RESULTS: Response rates were 71% (137 of 194) for families of children, and 54% (74 of 138) for families of adolescents. NPE data were available for 121 children and 60 adolescents. In children, the birth status model predicted 26% of the variability (R(2) hope 21%) compared with 23% of the variability (R(2) hope 23%)in the adolescents. The current function model explained 47% of the variability (R(2) hope 19%) in children compared with 31% of the variability (R(2) hope 24%) in the adolescents. CONCLUSIONS: In both age groups, parental hope was more strongly associated with the HRQL than neonatal or current physical deficits. A prospective study is required to determine whether a causal relation exists between parental hope and HRQL of children and adolescents with SB.

An evaluation of botulinum-A toxin injections to improve upper extremity function in children with hemiplegic cerebral palsy.

OBJECTIVE: In a randomized, controlled, single-blind trial, to test the hypothesis that botulinum-A toxin (BTA) injections into the upper extremity of children with spastic hemiplegia improve upper extremity function. STUDY DESIGN: Thirty children with hemiplegia, aged 2.5 to 10 years, were randomly assigned to receive: (1) a BTA injection into 1 or more of 3 muscle groups (biceps, volar forearm muscles, adductor pollicis) plus occupational therapy or (2) occupational therapy alone. Blinded outcomes obtained at baseline and at 1, 3, and 6 months included the Quality of Upper Extremity Skills Test (QUEST), goniometry measurements, grip strength, and Ashworth scores. The caregiver completed the self-care domain of the Pediatric Evaluation of Disability Inventory. RESULTS: Twenty-nine subjects completed the study. The QUEST demonstrated a significant improvement favoring the treatment group on a 2-way analysis of variance (F = 4.69, df = 1,83; P =.039). BTA treatment was also associated with an improvement in score on the self-care domain of the Pediatric Evaluation of Disability Inventory (F = 4.68, df = 1,82; P =.04). CONCLUSIONS: This study supports the effectiveness of BTA injections to improve upper extremity function of children with hemiplegia who have at least moderate spasticity.

Development of a health-related quality of life instrument for use in children with spina bifida.

The objective of this study was to develop a spina bifida health-related quality of life (HRQOL) instrument. Items were generated through semistructured interviews, and reduced by frequency-importance product ranking. Validity was assessed by correlating the HRQOL score with a global question concerning the child's well-being using the Spearman's rank coefficient, and the Piers-Harris Children's Self-Concept Scale (P-H) using the Pearson correlation coefficient. Reproducibility was assessed at 2-week intervals using the intra-class correlation coefficient (ICC). Field testing was undertaken in a larger sample to evaluate item-total correlation, internal consistency and construct validity. Patients taking part in the study were 329 children and adolescents with spina bifida attending two treatment centres. Over 600 items were generated. These were reduced to 47 questions and 50 questions, for children and adolescents respectively. The correlation between the HRQOL score and the global question was r = 0.57, and with the P-H was 0.26 (children). These values for adolescents were 0.63, and 0.89, respectively. Reproducibility was ICC = 0.78 (children) and 0.96 (adolescents). Following field testing, the questionnaire was further reduced to 44 questions (children) and 47 questions (adolescents) by eliminating questions with an item- total correlation less than 0.20. Cronbach's alphas for the final instrument were 0.93 (children) and 0.94 (adolescents), and construct validity correlations were 0.63 (children) and 0.37 (adolescents). The spina bifida HRQOL instrument has good measurement properties and may be used as a discriminative instrument. Assessment of responsiveness is necessary before using it to evaluate therapy in clinical trials.

Attention deficit hyperactivity disorder: does cognitive behavioral therapy improve home behavior?

This study evaluates the effectiveness of cognitive behavioral therapy (CBT) in improving the home behavior of children with attention deficit hyperactivity disorder (ADHD). Twenty-five boys (age 7 to 13) with a diagnosis of ADHD were randomized to a CBT or supportive therapy control group. Outcome measures included parent and teacher ratings of the child on the Behavior Problem Checklist-Attention Problem Subscale (BPC-AP), and the Self-Control Rating Scale (SCRS), parent ratings on the Modified Werry Weiss Activity Scale, and child ratings on the Piers Harris Self-Concept Scale and Matching Familiar Figures Task. Data were analyzed using a two-way analysis of variance for main effects. A significant improvement favoring CBT was found on the Werry Weiss Scale, which measures the parent's perception of the child's hyperactivity in the home, and the child's rating of his/her self-esteem on the Piers Harris Self-Concept Scale. Other outcome measures did not demonstrate statistical differences. This research provides support for the use of CBT in children with ADHD. CBT was found to improve the parent's perception of the child's hyperactivity in the home as well as the child's self-esteem.