RESUMEN
In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.
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Comunicación , Conducta Social , HumanosRESUMEN
AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.
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Parálisis Cerebral , Calidad de Vida , Niño , Humanos , Adulto Joven , Autoinforme , Dolor/diagnóstico , Adaptación Psicológica , Medición de Resultados Informados por el Paciente , Psicometría , Reproducibilidad de los ResultadosRESUMEN
AIM: To review the evidence for the effects of adapted bicycle riding on body structures and functions, activity, participation, and quality of life outcomes in children with disabilities, along with family-level participation outcomes. METHOD: A systematic review with searches of nine electronic databases to identify studies involving participants with a developmental disability aged 4 to 18 years who used a dynamic adapted bicycle was completed in August 2021. Risk of bias was assessed based on individual study designs. A narrative synthesis integrated the findings of the included studies. Certainty of evidence was synthesized using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. RESULTS: Ten studies were included with 234 participants. Five studies reported outcomes at the body structures and functions level, ten reported activity-level outcomes, two reported participation-related outcomes, and none assessed quality of life or family participation in social and recreational activities. INTERPRETATION: Adapted bicycle riding interventions may improve gross motor function, enhance lower-limb muscle strength, and promote physical activity; however, certainty of evidence of effects was rated very low using GRADE. Further research is required to understand the impact of adapted bicycle riding on the participation outcomes of children and adolescents with disabilities and on family-level participation in social and recreational activities. WHAT THIS PAPER ADDS: Adapted bicycle riding interventions may improve motor functions and physical activity. Evidence about participation outcomes after adapted bicycle riding is limited. Research on adapted bicycle riding interventions in natural settings is needed.
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Ciclismo , Personas con Discapacidad , Niño , Humanos , Adolescente , Calidad de Vida , Ejercicio FísicoRESUMEN
AIM: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda. METHOD: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V. INTERPRETATION: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. WHAT THIS PAPER ADDS: Children and young people with cerebral palsy (CP) attended all activities less than their peers without CP. Differences in attendance were larger for community-based activities than home activities. When attending activities, children and young people with CP were less involved than their peers. Children and young people with milder impairments attended less frequently than their peers without CP. Children and young people with milder impairments attended more frequently than their peers with severe impairments.
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Parálisis Cerebral , Personas con Discapacidad , Masculino , Femenino , Humanos , Niño , Adolescente , Actividades Cotidianas , Uganda/epidemiología , Estudios TransversalesRESUMEN
In the field of disability research and advocacy, the notion of 'cures' is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether 'cures for CP' is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of 'cures for CP' that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies.
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Parálisis Cerebral/terapia , Objetivos , Investigación , Australia , Humanos , Nueva ZelandaRESUMEN
BACKGROUND: The Neurological Hand Deformity Classification (NHDC) is an impairment-based tool that classifies hand deformity into one of two ordinal scales: flexion or extension deformities. Classification is made from live observation or from recorded video footage. Differentiation between the levels is determined by wrist position and wrist and finger movement. PURPOSE: To examine aspects of validity and reliability of the NHDC. STUDY DESIGN: A measurement study design. METHODS: Data from a convenience sample of 127 children with cerebral palsy, 66 males: 61 females, ranging in age from 8 months to 15 years, across all Manual Ability Classification System levels I to V, were analyzed. Construct validity was assessed by testing predetermined hypotheses of relationships between the NHDC and measures of body function and activity measures with observed performance using the Chi Squared Test of Independence and Spearman Correlation Coefficient. Test-retest and inter-rater reliability were assessed by calculating agreement between repeated measures and paired raters using weighted kappa and Cohen's kappa with 95% confidence intervals. RESULTS: Predicted hypotheses for the NHDC were met in nine of 10 Spearman's rho correlations with body structure measures and in 2 of 7 correlations with activity measures. Test-retest for flexion deformities: κw = 0.84; 95% CI 0.70-0.98; and extension deformities: κ = 1.0; 95% CI 1.0-1.0 was good to excellent; inter-rater reliability for flexion deformities: κw = 0.76; 95% CI 0.67-0.85; and extension deformities κ = 0.75; 95% CI 0.43-1.0 was moderate to excellent. CONCLUSION: Expected relationships between the NHDC and other measures, stability between repeated measures and acceptable between-rater agreement supports confidence classifying hand deformity in children with cerebral palsy with the NHDC.
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Parálisis Cerebral , Deformidades de la Mano , Masculino , Niño , Femenino , Humanos , Reproducibilidad de los Resultados , Parálisis Cerebral/diagnóstico , Extremidad Superior , DedosRESUMEN
INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.
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Niños con Discapacidad , Terapia Ocupacional , Niño , Humanos , Investigadores , Padres , ConocimientoRESUMEN
Despite facing multidimensional inequalities, some adults with cerebral palsy achieve positive social outcomes (e.g., independent living, employment, and romantic relationships). We interviewed 23 adults (aged 23-47 years) about how they successfully negotiated the challenges of adulthood. Common to all life situations was doing what others (people without cerebral palsy) do. Origins of success lay in their formative experiences (e.g., typical parental expectations with commensurate support and acceptance and supported involvement in school life). Their present functioning (e.g., positive self-concept, well-honed social skills, and physical fitness) combined with present contexts (e.g., expectations of involvement in adult activities and accessible and accommodating environments) enabled them to find ways of negotiating challenges. Finding a way included drawing on knowledge and skills, gravitating toward those who are comfortable with difference, maintaining function, and using natural and paid supports. The findings suggest multiple avenues for supporting people with cerebral palsy to achieve positive social outcomes.
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Parálisis Cerebral , Adulto , Humanos , Aprendizaje , Negociación , Instituciones Académicas , AutoimagenRESUMEN
IMPORTANCE: Evidence on common types of participation-focused caregiver strategies can help occupational therapy practitioners to take an evidence-based approach to designing participation-focused practice. OBJECTIVE: To identify and explore types of caregiver strategies to support young children's participation in valued occupations in the home and community. DESIGN: Qualitative study using a subset of data collected online with the Young Children's Participation and Environment Measure (YC-PEM). Narrative responses about strategy use were content coded to the family of Participation-Related Constructs (fPRC) framework using a deductive analytic approach to identify relevant types of participation-focused strategies used in the home and community. Responses were further analyzed within each relevant fPRC construct using an inductive analytic approach to identify the scope of strategies used for each construct. SETTING: Early intervention. PARTICIPANTS: Caregivers (N = 106) of young children receiving early intervention. OUTCOMES AND MEASURES: Caregivers' strategies to support their child's home and community participation, provided by the YC-PEM. RESULTS: Caregivers most commonly adapted the child's environment or context to support their child's home and community participation (45.06%). The least common focus of caregiver strategies was the child's activity competencies (11.16%). Three or more types of caregiver strategies were identified for each participation-related construct. CONCLUSION AND RELEVANCE: Results indicated that caregivers used a range of strategies related to each of the participation-related constructs to support their child's participation in home and community occupations, most commonly targeting the environment. Occupational therapy practitioners can select from this range of strategies when planning participation-focused early intervention with families. WHAT THIS ARTICLE ADDS: This study yields new evidence on the scope of caregiver strategy use to support young children's participation in home and community occupations. Occupational therapy practitioners can apply this evidence to anticipate common areas of caregiver strategy use in participation-focused practice with families in early intervention.
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Cuidadores , Intervención Educativa Precoz , Niño , Preescolar , Humanos , Investigación CualitativaRESUMEN
AIM: To: (1) investigate the relationship between upper-limb impairment and health-related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL-Child) onto the Child Health Utility 9D (CHU9D) measure. METHOD: The associations between physical and upper-limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL-Child total/domain scores, age, and sex. RESULTS: Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL-Child (r=-0.388 and r=-0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL-Child (r=-0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. INTERPRETATION: The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper-limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL-Child for economic evaluation and can be used to conduct cost-utility analyses. WHAT THIS PAPER ADDS: The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health-related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.
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Algoritmos , Parálisis Cerebral/fisiopatología , Calidad de Vida , Índice de Severidad de la Enfermedad , Extremidad Superior/fisiopatología , Adolescente , Parálisis Cerebral/psicología , Niño , Femenino , Humanos , Masculino , Calidad de Vida/psicologíaRESUMEN
AIM: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD: Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS: Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION: Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS: Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.
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Lesiones Encefálicas/psicología , Parálisis Cerebral/psicología , Participación Social/psicología , Niño , Evaluación de la Discapacidad , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
AIM: To review the evidence for behavioural interventions to reduce drooling in children with neurodisability. METHOD: A detailed search in eight databases sought studies that: (1) included participants aged 0 to 18 years with neurodisability and drooling; (2) provided behavioural interventions targeting drooling or a drooling-related behaviour; and (3) used experimental designs. Two reviewers extracted data from full-text papers independently. Results were tabulated for comparison. The Risk of Bias assessment in N-of-1 Trials scale for single case experimental designs (SCEDs) and the Cochrane risk of bias assessment tool for randomized controlled trials (RCTs) were applied. RESULTS: Of an initial yield of 763, seven SCEDs and one RCT were included. Behavioural interventions included the use of reinforcement, prompting, self-management, instruction, extinction, overcorrection, and fading. Each assessed body functions or structures' outcomes (drooling frequency and severity); three included activity outcomes (mouth drying, head control, eye contact, and vocalizations) and none assessed participation or quality of life. While each study reported positive effects of intervention, risk of bias was high. INTERPRETATION: Low-level evidence suggests behavioural interventions may be useful for treatment of drooling in children with neurodisability. Well-designed intervention studies are urgently needed to determine effectiveness. WHAT THIS PAPER ADDS: Behavioural interventions used to treat drooling included reinforcement, prompting, self-management, extinction, overcorrection, instruction, and fading. Interventions targeted body structures and function-level outcomes and activity-level outcomes. Low-level evidence supports the use of behavioural intervention to treat drooling.
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Terapia Conductista , Trastornos del Neurodesarrollo/complicaciones , Sialorrea/complicaciones , Sialorrea/terapia , Adolescente , Terapia Conductista/métodos , Niño , Preescolar , Humanos , Lactante , Trastornos del Neurodesarrollo/terapiaRESUMEN
BACKGROUND: Unilateral cerebral palsy (CP) is a condition that affects muscle control and function on one side of the body. Children with unilateral CP experience difficulties using their hands together secondary to disturbances that occur in the developing fetal or infant brain. Often, the more affected limb is disregarded. Constraint-induced movement therapy (CIMT) aims to increase use of the more affected upper limb and improve bimanual performance. CIMT is based on two principles: restraining the use of the less affected limb (for example, using a splint, mitt or sling) and intensive therapeutic practice of the more affected limb. OBJECTIVES: To evaluate the effect of constraint-induced movement therapy (CIMT) in the treatment of the more affected upper limb in children with unilateral CP. SEARCH METHODS: In March 2018 we searched CENTRAL, MEDLINE, Embase, CINAHL, PEDro, OTseeker, five other databases and three trials registers. We also ran citation searches, checked reference lists, contacted experts, handsearched key journals and searched using Google Scholar. SELECTION CRITERIA: Randomised controlled trials (RCTs), cluster-RCTs or clinically controlled trials implemented with children with unilateral CP, aged between 0 and 19 years, where CIMT was compared with a different form of CIMT, or a low dose, high-dose or dose-matched alternative form of upper-limb intervention such as bimanual intervention. Primarily, outcomes were bimanual performance, unimanual capacity and manual ability. Secondary outcomes included measures of self-care, body function, participation and quality of life. DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles and abstracts to eliminate ineligible studies. Five review authors were paired to extract data and assess risk of bias in each included study. GRADE assessments were undertaken by two review authors. MAIN RESULTS: We included 36 trials (1264 participants), published between 2004 and 2018. Sample sizes ranged from 11 to 105 (mean 35). Mean age was 5.96 years (standard deviation (SD) 1.82), range three months to 19.8 years; 53% male and 47% participants had left hemiplegia. Fifty-seven outcome measures were used across studies. Average length of CIMT programs was four weeks (range one to 10 weeks). Frequency of sessions ranged from twice weekly to seven days per week. Duration of intervention sessions ranged from 0.5 to eight hours per day. The mean total number of hours of CIMT provided was 137 hours (range 20 to 504 hours). The most common constraint devices were a mitt/glove or a sling (11 studies each).We judged the risk of bias as moderate to high across the studies. KEY RESULTS: Primary outcomes at primary endpoint (immediately after intervention)CIMT versus low-dose comparison (e.g. occupational therapy)We found low-quality evidence that CIMT was more effective than a low-dose comparison for improving bimanual performance (mean difference (MD) 5.44 Assisting Hand Assessment (AHA) units, 95% confidence interval (CI) 2.37 to 8.51).CIMT was more effective than a low-dose comparison for improving unimanual capacity (Quality of upper extremity skills test (QUEST) - Dissociated movement MD 5.95, 95% CI 2.02 to 9.87; Grasps; MD 7.57, 95% CI 2.10 to 13.05; Weight bearing MD 5.92, 95% CI 2.21 to 9.6; Protective extension MD 12.54, 95% CI 8.60 to 16.47). Three studies reported adverse events, including frustration, constraint refusal and reversible skin irritations from casting.CIMT versus high-dose comparison (e.g. individualised occupational therapy, bimanual therapy)When compared with a high-dose comparison, CIMT was not more effective for improving bimanual performance (MD -0.39 AHA Units, 95% CI -3.14 to 2.36). There was no evidence that CIMT was more effective than a high-dose comparison for improving unimanual capacity in a single study using QUEST (Dissociated movement MD 0.49, 95% CI -10.71 to 11.69; Grasp MD -0.20, 95% CI -11.84 to 11.44). Two studies reported that some children experienced frustration participating in CIMT.CIMT versus dose-matched comparison (e.g. Hand Arm Bimanual Intensive Therapy, bimanual therapy, occupational therapy)There was no evidence of differences in bimanual performance between groups receiving CIMT or a dose-matched comparison (MD 0.80 AHA units, 95% CI -0.78 to 2.38).There was no evidence that CIMT was more effective than a dose-matched comparison for improving unimanual capacity (Box and Blocks Test MD 1.11, 95% CI -0.06 to 2.28; Melbourne Assessment MD 1.48, 95% CI -0.49 to 3.44; QUEST Dissociated movement MD 6.51, 95% CI -0.74 to 13.76; Grasp, MD 6.63, 95% CI -2.38 to 15.65; Weightbearing MD -2.31, 95% CI -8.02 to 3.40) except for the Protective extension domain (MD 6.86, 95% CI 0.14 to 13.58).There was no evidence of differences in manual ability between groups receiving CIMT or a dose-matched comparison (ABILHAND-Kids MD 0.74, 95% CI 0.31 to 1.18). From 15 studies, two children did not tolerate CIMT and three experienced difficulty. AUTHORS' CONCLUSIONS: The quality of evidence for all conclusions was low to very low. For children with unilateral CP, there was some evidence that CIMT resulted in improved bimanual performance and unimanual capacity when compared to a low-dose comparison, but not when compared to a high-dose or dose-matched comparison. Based on the evidence available, CIMT appears to be safe for children with CP.
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Parálisis Cerebral/terapia , Modalidades de Fisioterapia , Adolescente , Niño , Preescolar , Femenino , Humanos , Inmovilización/métodos , Lactante , Recién Nacido , Masculino , Movimiento , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del Tratamiento , Adulto JovenRESUMEN
Simulation is increasingly used to supplement clinical placement in preregistration health professional programs. However, there are no conceptual frameworks to guide the design of these learning experiences when replacing a clinical placement. In the present study, the conceptual framework for simulated clinical placements (CF-SCP) is presented. Evolving from an iterative process of synthesizing learning and simulation theory, findings from the empirical literature, and the perspectives and ideas from experts in occupational therapy practice, education and simulation-based learning, the CF-SCP aligns principles and processes of workplace and simulation learning. The application of the CF-SCP is described in the context of a 1 week full-time SCP. The CF-SCP provides a structure for organizing, understanding, and applying the principles and processes to design a simulated placement to be a "placement replacement" experience. Articulating a conceptual framework for the design of simulated placement experiences to replace actual clinical placement hours in the allied health sector is important if these experiences are to be tested for validity, efficacy, and transferability to a range of occupational therapy practice areas and other health disciplines.
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Simulación por Computador/tendencias , Terapia Ocupacional/educación , Preceptoría/métodos , Humanos , Terapia Ocupacional/métodos , Selección de Personal/métodos , Selección de Personal/normas , Preceptoría/normasRESUMEN
INTRODUCTION: This economic evaluation complements results of the randomised controlled trial that established non-inferiority of the learning outcomes of a one-week simulated clinical placement (SCP) in occupational therapy qualifying degrees in comparison to an equivalent traditional clinical placement (TCP). This companion study presents detailed cost analyses of two placement alternatives and a cost-benefit study to assess the value for money of SCP. An economic evaluation of simulated versus traditional placements has not previously been conducted in Australia. METHODS: Nine SCP/TCP rounds were conducted by six Australian universities. Costs were collected using study-specific instruments. Public health sector costs were sourced from available literature. Willingness-to-pay for SCP/TCP was estimated using both a Discrete Choice Experiment and a Contingent Valuation method. These methods were employed to assess a comparative 'value' of SCP/TCP from the perspective of heads of occupational therapy departments (N = 28), who were asked to put a monetary value on the broader range of benefits associated with SCP/TCP. RESULTS: From the universities' perspective the average cost per student ranged from AUD$460 to AUD$1511 for simulated and AUD$144 to AUD$1112 for traditional placement. From the health care sector perspective, the difference in costs favoured simulated placements for four implementations and traditional placements for five. In the Discrete Choice Experiment respondents preferred traditional rather than simulated placement and would pay additional AUD$533. The estimated monetary value of simulated placements from a contingent valuation ranged from AUD$200 to AUD$1600. CONCLUSIONS: For universities that procure TCPs predominately at public health care facilities and sustain high administrative overheads, the SCP program could be a cost-saving alternative. From a broader value-for-money perspective, respondents favoured TCP over SCP, yet placed importance on placement availability and opportunity to demonstrate competence for students during the placement. Results should be interpreted with caution and further research with larger sample sizes is required.
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Prácticas Clínicas/economía , Terapia Ocupacional/educación , Entrenamiento Simulado/economía , Australia , Prácticas Clínicas/organización & administración , Análisis Costo-Beneficio , Femenino , Humanos , Masculino , Entrenamiento Simulado/organización & administraciónRESUMEN
AIM: We aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. METHOD: Six databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. RESULTS: From an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. INTERPRETATION: Improved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base. WHAT THIS PAPER ADDS: The fPRC can support our rapidly evolving and expanding understanding of participation. Instruments selected to measure participation do not always align with emerging concepts. Matching research aims to a chosen measure's content will improve understanding of participation. Opportunities exist to develop validated participation measures, especially self-reported measures of involvement.
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Niños con Discapacidad/rehabilitación , Participación del Paciente , Adolescente , Niño , Preescolar , Familia , Humanos , LactanteRESUMEN
AIM: Economic appraisal can help guide policy-making for purchasing decisions, and treatment and management algorithms for health interventions. We conducted a systematic review of economic studies in cerebral palsy (CP) to inform future research. METHOD: Economic studies published since 1970 were identified from seven databases. Two reviewers independently screened abstracts and extracted data following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Any discrepancies were resolved by discussion. RESULTS: Of 980 identified references, 115 were included for full-text assessment. Thirteen articles met standard criteria for a full economic evaluation, two as partial economic evaluations, and 18 as cost studies. Six were full economic evaluations alongside clinical studies or randomized controlled trials, whereas seven involved modelling simulations. The economic case for administration of magnesium sulfate for imminent preterm birth is compelling, achieving both health gain and cost savings. Current literature suggests intrathecal baclofen therapy and botulinum toxin injection are cost-effective, but stronger evidence for long-term effects is needed. Lifestyle and web-based interventions are inexpensive, but broader measurement of outcomes is required. INTERPRETATION: Prevention of CP would avoid significant economic burden. Some treatments and interventions have been shown to be cost-effective, although stronger evidence of clinical effectiveness is needed. What this paper adds Cost-effectiveness evidence shows prevention is the most significant strategy. Some treatments are cost-effective, but stronger evidence for long-term effectiveness is required. Comparison of treatment costs is challenging owing to variations in methodologies and varying clinical indications.
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Parálisis Cerebral/economía , Parálisis Cerebral/terapia , Manejo de la Enfermedad , Costos de la Atención en Salud , Algoritmos , Parálisis Cerebral/psicología , Análisis Costo-Beneficio , Humanos , Evaluación de Resultado en la Atención de Salud , Calidad de Vida/psicologíaRESUMEN
OBJECTIVE: A cross-sectional survey was conducted to determine which personal and environmental characteristics influenced diversity of participation in activities outside school for typically developing children and adolescents. METHOD: Four hundred twenty-two (215 boys) typically developing Australian children (mean = 11.0 yr) completed the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activity of Children to describe their participation on five activity types: Recreational, Active Physical, Social, Self-Improvement, and Skill-Based. Linear regression analyses were conducted. RESULTS: Predictors of participation diversity were age and preference for Recreational (aR² = .44); preference for Active Physical (aR²= .19); gender, school type, and preference for Social (aR² = .19); preference for Skill-Based (aR² = .25); and gender, school style, socioeconomic score, and preference for Self-Improvement (aR² = .24). CONCLUSION: Preference plays a key role in determining the diversity of participation in activities outside school.
Asunto(s)
Actividades Recreativas , Recreación , Participación Social , Adolescente , Australia , Niño , Estudios Transversales , Humanos , Masculino , Instituciones Académicas , Encuestas y CuestionariosRESUMEN
AIM: To understand whether knowledge translation activities are effective, good measurement of practice is required. This study investigated the psychometric properties of a self-report measure of allied health practitioner (AHP) evidence-based behaviors when working with children with cerebral palsy. METHODS: Construct validity and reliability studies were undertaken for the 12-item Evidence Based Practice Competency Questionnaire - Cerebral Palsy (EBP-CQ-CP) using the Consensus-based Standards of Measurement Instruments methods. Factor analysis tested construct validity. Weighted Kappa tested chance-corrected agreement for each item and intra-class correlation coefficients (ICC) the reliability of factors derived in the validity study. RESULTS: In the validity study 259 AHP completed the EBP-CQ-CP on occasion 1, and 228 on occasion 2. In the reliability study 46 AHP completed the questionnaire twice. Exploratory factor analysis determined the EBP-CQ-CP contained two scales: 'communicating evidence based expectations' and 'evidence based assessment practices'. Confirmatory factor analysis using data from the second occasion of assessment supported the findings. Excellent consistency in ratings across factor scores were obtained from 46 pairs of raters: Factor 1, ICC = 0.93 (95% Confidence Interval 0.88-0.96); Factor 2, ICC = 0.94 (95% Confidence Interval 0.88-0.97). CONCLUSIONS: This study supports the interpretation of the EBP-CQ-CP in a clinically meaningful and psychometrically robust manner.
Asunto(s)
Técnicos Medios en Salud/psicología , Parálisis Cerebral/diagnóstico , Competencia Clínica , Práctica Clínica Basada en la Evidencia/métodos , Pautas de la Práctica en Medicina , Psicometría/métodos , Adulto , Técnicos Medios en Salud/estadística & datos numéricos , Análisis Factorial , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Autoinforme , Encuestas y CuestionariosRESUMEN
PURPOSE: To explore the role of pediatric physical therapists (PPT) in promoting sports participation in children with developmental coordination disorder (DCD) and identify associated barriers and facilitators. METHODS: Questionnaires were provided to 243 PPTs. Qualitative, semistructured, in-depth interviews were administered with the PPTs, children with DCD, and parents. RESULTS: Approximately 67% of questionnaires were returned. Approximately 46% of PPTs were active in guiding children with DCD to sports clubs. This guidance was facilitated by knowledge of local sports, clubs that include children with DCD, and contact persons. Barriers to sports participation were the motor impairment or coincident disorder, insufficient participants to compose a team, and lack of guidance on how to include children with DCD. CONCLUSIONS: PPTs currently guide children with DCD to sports clubs, but this guidance may be improved by connecting them to special exercise programs and mainstream sports clubs and examining children's experiences during sports.