Identifying priorities for Australian disability research using Q methodology.

BACKGROUND: Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability. OBJECTIVE: To explore and inform disability research for Australia, including perspectives of people with disability. METHODS: As part of a research program, we used Q methodology to explore "what should guide the Australian research agenda?" People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from -4 to +4, according to "Which topics should guide disability research the least to the most?" Factor analysis revealed four distinct but interrelated participant viewpoints. RESULTS: 52 participants (65 % female, aged 18-65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 - design and delivery of services across the lifespan. Viewpoint 2 - understanding the diverse experience of those with disability. Viewpoint 3 - designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 - addressing mental health for those with disability no matter where they live. CONCLUSION: These viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

Consumer-driven evaluation of assistive technology usage and perceived value in people with myositis in Australia.

INTRODUCTION: Idiopathic inflammatory myopathies (known as 'myositis') are a group of rare sporadic inflammatory muscle disorders that significantly impact function and quality of life. There are no standardised approaches in the use of assistive technologies in myositis. This study was initiated to investigate current use and perceived value of assistive technology (AT) by people with myositis. METHODS: A cross-sectional online questionnaire (Qualtrics) was designed to capture information regarding AT use and perceived value and demographic information from people with myositis across Australia. The questionnaire was distributed via the Myositis Association of Australia and specialist myositis clinics. Participants were asked to identify which AT items they owned and how frequently the item was used and to rate the 'usefulness' of those items. Information was also collected on participants' engagement with health professionals regarding assistive technologies. CONSUMER AND COMMUNITY INVOLVEMENT: Consumer involvement via the Myositis Research Consumer Panel identified a knowledge gap regarding AT. The questionnaire was designed with consumer input and review. RESULTS: One hundred two people (102) with myositis completed the questionnaire. One hundred (100) participants owned at least one AT device, with a median of 12.5 items and a maximum of 65 items. The most used devices were associated with toileting, personal care and mobility. Participants rated AT devices relating to environmental support, sleeping, seating and body support as most useful. There was a positive correlation between disease duration and number of devices used (r2 = 0.248, p = 0.012). Majority of participants (75.5%) were interested in talking to health professionals about AT; however, only 50% had done so. CONCLUSION: AT device usage is high among people with myositis, with most items deemed to be useful. Greater occupational therapy input into recommendations and potential funding options may improve knowledge and access to AT.

Effect of targeted movement interventions on pain and quality of life in children with dyskinetic cerebral palsy: a pilot single subject research design to test feasibility of parent-reported assessments.

PURPOSE: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention. MATERIAL AND METHODS: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up. RESULTS: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases. CONCLUSIONS: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.

The Neurological Hand Deformity Classification: Construct validity, test-retest, and inter-rater reliability.

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.

Unpacking the application of Q methodology for use in occupational therapy research.

BACKGROUND: Occupational therapy research has not fully utilized available research methods when exploring occupational therapists' views on specific interventions and service provision nor when exploring consumer priorities and the impact of occupational therapy services. Q methodology, a quantitative method for the systematic assessment of qualitative data, is an approach that can be used to examine viewpoints related to occupational therapy. AIMS/OBJECTIVES: To add experiential knowledge to guide researchers new to navigating Q methodology and encourage researchers to consider the application of Q methodology when exploring viewpoints pertinent to occupational therapy practice and research. MATERIAL AND METHODS: The application of Q methodology in published occupational therapy and occupational science research is identified, and an experience-based review of Q methods undertaken. RESULTS: More detailed explanation and reflection on each stage of Q methodology, including the factor analysis stage, than is currently available in the literature is presented to support successful implementation of this method. CONCLUSION: Sharing experience in implementing Q methodology may inform and encourage researchers in its use as one method for bridging the gap between qualitative and quantitative data. SIGNIFICANCE: The rigor of the method's processes may add credibility to identified viewpoints and how they could inform occupational therapy practice.Key messagesQ methodology can be used in occupational therapy research to explore consumer and therapist viewpoints regarding interventions, service provision, priorities and the profession itself.Q methodology employs a specific, repeatable process within each stage of the research process to ensure rigour.Q methodology provides an approach to combining qualitative research methods with quantitative analysis techniques to understand the viewpoints of interest.

Prescribing upper limb orthoses for children with cerebral palsy: a Q methodology study of occupational therapists' decision making.

Purpose: This study identified occupational therapists' viewpoints that guide their practice of upper limb orthosis prescription for children with cerebral palsy (CP).Methods: A qualitative study utilising Q methodology explored participants' viewpoints. Thirty-nine occupational therapists (38 females) were purposively recruited to rank statements generated from interviews of experienced clinicians and peer reviewed and published literature. Statements about reasons for orthoses prescription, were ranked according to what guides decision making the most to least. Data from ranked statements were analysed using by-person factor analysis to reveal the different ways statements were grouped. The resultant factors, based on the average arrangement of statements associated with each factor, were interpreted and named as viewpoints.Results: Viewpoints identified: 1. Potential effect of the orthosis (n = 12 sorts); 2. Biomechanical presentation (n = 12 sorts); and 3. Client/therapist relationship (n = 10 sorts). The "Client's goals" statement was ranked highest across all viewpoints.Conclusions: Viewpoints identified may inform development of clinical guidelines. Further research is required to (i) identify valid and reliable classification and assessment tools to guide decision making; and (ii) establish the mechanism of the effect of orthotic intervention by considering the link between the biomechanical purpose of the orthosis (e.g., mobilise tissue) and aim of intervention (prevent contracture).Implications for rehabilitationQ methodology provided an opportunity to identify viewpoints of occupational therapists that guide their upper extremity orthosis prescription decision making.Consistent with best-practice, clients' goals were the primary focus of decision making in each viewpoint.It is recommended that clinicians consider the identified viewpoints; 1) the potential effects of the orthosis, 2) the biomechanical presentation of the child, within 3) an established client/therapist relationship when prescribing upper extremity orthoses.Practice guidelines to inform upper limb orthotic intervention may be developed using the identified viewpoints.

Rationale for prescription, and effectiveness of, upper limb orthotic intervention for children with cerebral palsy: a systematic review.

PURPOSE: To explore (i) reasons for upper limb orthosis prescription for children with cerebral palsy (CP), (ii) the link between reason and effect according to intended outcome and outcome measure utilized and (iii) to classify the prescribed orthoses using standard terminology. METHOD: A prospectively registered (center for reviews and dissemination: 42015022067) systematic review searched for experimental and observational studies investigating rigid/thermoplastic upper limb orthotic intervention for children aged 0-18 with CP. The Cochrane central register, MEDLINE, CINAHL, Embase, SCOPUS and Web of Science databases were searched. Included studies were assessed for risk of bias. RESULTS: Sixteen studies met selection criteria. Two studies described a specific reason for orthosis prescription, six prescribed orthoses to manage a clinical symptom and eight did not describe a reason. Eight studies were analyzed for effect according to intended outcome with no clear connection found between reasons for prescription, outcome measures utilized and effect reported. INTERPRETATION: The lack of evidence for upper limb orthotic intervention for children with CP leads to uncertainty when considering this treatment modality. Future research is needed to evaluate the effect of orthosis wear in relation to intended outcome utilizing robust methods and valid and reliable outcome measures. Implications for rehabilitation: Insufficient evidence exists about the reason for prescription of upper limb orthoses. The connection between reason for orthosis prescription, intended outcome, outcome measure utilized and observed effect is unclear. Recommend orthosis prescription to be accompanied by clear documentation of the aim of the orthosis and description using orthosis classification system terminology. Outcome measures consistent with the reason for orthosis prescription and intended outcome of the intervention are essential to measure effectiveness of the intervention.

The Neurological Hand Deformity Classification for children with cerebral palsy.

BACKGROUND/AIM: The purpose of this study was to evaluate the reliability of the Neurological Hand Deformity Classification and use it to describe changes in hand deformity over time in children with cerebral palsy. METHODS: We identified 114 video clips of 26 children with cerebral palsy, aged 1-18 years (mean = 8.4, SD = 4.2), performing upper-limb tasks at multiple time points (n = 3-8) at least 6 months apart. Using the Neurological Hand Deformity Classification, three observers classified hand deformity in the video clips. Inter- and intra-observer reliabilities were estimated using Fleiss and Cohen's kappa (κ) and the temporal changes in classification of hand deformity were investigated. RESULTS: Inter- and intra-observer reliability respectively were κ = 0.87 and κ = 0.91. Hand deformity was identified in all children at all time points, even before the age of 2 years. Ten children did not change hand classification, wrist flexion increased in eight, and eight showed changes from wrist flexion to extension or vice versa. CONCLUSIONS: The Neurological Hand Deformity Classification is a reliable tool to classify hand deformity in children with cerebral palsy. For more than one-third of children hand deformity classification did not change. For the remaining children, two patterns of change in hand deformity over time were identified. It is recommended that children with cerebral palsy involving their upper limbs be monitored regularly. SIGNIFICANCE OF THE STUDY: This is the first study to document longitudinal changes in hand deformity in children with cerebral palsy.