Consumer involvement in research - parent perceptions of partnership in cerebral palsy research: a qualitative study.

PURPOSE: Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research. MATERIALS AND METHODS: Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation. RESULTS: Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included "Research Is Better with Parents" and "Parents Benefit from Being Research Partners." A third, "Parents as Research Partners," contained the themes "Flexible Involvement," "Starting Partnerships," and "Building and Sustaining Partnerships." CONCLUSION: This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research.IMPLICATIONS FOR REHABILITATIONParents believed that parent partnership in research has benefits for the research and for the consumers involved.Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners.Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships.Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.

Measure of Early Vision Use: initial validation with parents of children with cerebral palsy.

PURPOSE: To report initial psychometric evidence on the Measure of Early Vision Use. METHOD: Data on performance of the Measure of Early Vision Use scale were collected from 100 parents of children with cerebral palsy aged 0-12 years via online survey. Psychometric evaluation included assessment of scale dimensionality using Classical Test Theory and hypothesis testing for evidence of construct validity. RESULTS: Principal components analysis of the 14-item parent-rated Measure of Early Vision Use revealed one component with an eigenvalue of 9.343, explaining 66.7% of variance; internal consistency was high (Cronbach's α = 0.96). Total scores ranged from 15-56 (Mean 42.8, standard deviation = 10.6). The results support seven pre-defined hypotheses including statistically significant differences in MEVU-total scores between children with and without parent-reported cerebral visual impairment. CONCLUSIONS: Measure of Early Vision Use is the first assessment tool to describe 'how vision is used' in children with cerebral palsy. Results provide preliminary evidence that the measure comprises a unidimensional construct, sufficient construct validity, and feasibility as a parent-completed online assessment. Findings on internal structure provide foundational evidence and require further testing with Confirmatory Factor Analysis or Rasch Analysis.IMPLICATIONS FOR REHABILITATIONThe Measure of Early Vision Use is a new instrument to describe the use of basic visual abilities and is feasible to use as a parent-completed online questionnaire.The Measure of Early Vision Use is a unidimensional scale with sufficient construct validity to supports its use as a measure of 'how vision is used' without confounding visual ability with the reason why it might be impaired (e.g., cerebral vision impairment, motor limitations, or cognition).There is potential for the Measure of Early Vision Use to support early intervention planning for children with (or at high risk of) cerebral palsy.

Measure of Early Vision Use: development of a new assessment tool for children with cerebral palsy.

PURPOSE: To report the development of an assessment tool to describe "how vision is used" for children with cerebral palsy. METHOD: Measurement development consisted of three steps: (i) an online survey to explore the relevance and comprehensiveness of visual behaviours identified in a previous conceptualisation study; (ii) construction of items and a rating scale for the new measure; and (iii) cognitive interviews to explore comprehensibility and refine the measure in preparation for field testing. Survey respondents were 130 parents of children with cerebral palsy, eight adults with cerebral palsy, and 108 clinicians (n = 246). Nine parents participated in the interviews. RESULTS: The new tool, the Measure of Early Vision Use, is a 14-item descriptive measure of typical performance of visual behaviours observable in everyday activities, as rated by parent/caregiver observation. Each item is rated on a 4-point ordinal scale. CONCLUSIONS: This new measure is conceptually grounded within the Activity level domain of the International Classification of Functioning, Disability and Health as a measure of a single visual ability construct. The target population is children with cerebral palsy, and using parent report the Measure of Early Vision Use describes both strengths and limitations in using vision. This study addressed the selection of items and response options for the new scale, and provides evidence to support content relevance, comprehensiveness and comprehensibility from key stakeholders. Further research will explore psychometric properties and clinical utility.Implications for rehabilitationThe ability to use vision in daily activities is relevant to the development and learning of all children, so the availability of a method for describing visual abilities has potential for diverse research and clinical purposes.The Measure of Early Vision Use is a parent-report tool that provides a criterion-referenced method for quantifying and describing how children use vision in typical daily activities to support intervention planning.Clinicians and parents wishing to measure vision use in children with cerebral palsy can be confident about the rigorous methods used to develop this tool, including consultation with key stakeholders.

Methods for conceptualising 'visual ability' as a measurable construct in children with cerebral palsy.

BACKGROUND: Vision influences functioning and disability of children with cerebral palsy, so there is a growing need for psychometrically robust tools to advance assessment of children's vision abilities in clinical practice and research. Vision is a complex construct, and in the absence of clarity about this construct it is challenging to know whether valid, reliable measures exist. This study reports a method for conceptualising 'visual ability' as a measurable construct. METHODS: Using the items from 19 assessment tools previously identified in a systematic review, this study used a two-phase process: first, deductive content analysis linked items to the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY), and second, vision-specific 'Activity'-level items were explored using inductive thematic analysis. RESULTS: The linking and content analysis identified that existing assessment tools are measuring vision across the ICF-CY domains of Body Functions, Activities and Participation, and Environmental and Personal Factors. Items specifically coded to vision at the Activity level were defined as measuring 'how vision is used', and these items form the basis of the conceptualisation that 'visual ability' is measurable as a single construct. The thematic analysis led to the identification of 3 categories containing 13 themes that reflect a child's observable visual behaviours. Seven abilities reflect how a child uses vision: responds or reacts, initiates, maintains or sustains looking, changes or shifts looking, searches, locates or finds, and follows. Four interactions reflect the contexts in which a child uses their vision to purposefully interact: watches and visually interacts with people and faces, objects, over distance, and with hands. Finally, two themes reflect a child's overall use of vision in daily activities: frequency of use, and efficiency of use. CONCLUSIONS: This study demonstrates an approach to exploring and explaining a complex topic utilising World Health Organization language and building on existing research. Despite the complexity of vision, the concept of 'how vision is used' can be clearly defined as a measurable construct at the Activity level of the ICF-CY. This study has identified observable visual behaviours that may be developed into items assessing how vision is used in daily activities.

Measurement of visual ability in children with cerebral palsy: a systematic review.

AIM: To identify and evaluate measures of visual ability used with children with cerebral palsy (CP). METHOD: Eight databases were searched for measures of visual ability. Key selection criteria for measures were: use with children with CP; focus of visual ability measurement at the Activities and Participation domain of the International Classification of Functioning, Disability and Health (ICF). The Consensus-based Standards for the Selection of Measurement Instruments (COSMIN) Checklist was used to assess psychometric properties. RESULTS: From 6763 papers retrieved, 25 were relevant and 19 measures of visual ability were identified. Only 10 measures were supported with evidence of validity or reliability. No discriminative measure analogous to existing CP functional classification systems was found. No outcome measure valid for evaluation of visual abilities of children with CP was found. INTERPRETATION: Vision impairment is recognized as relevant to the functioning of children with CP; however, measurement of vision is most often focused at 'Body Function' levels, for example visual acuity. Measuring visual abilities in the Activities and Participation domain is important in considering how a child with CP functions in vision-related activities. The lack of psychometrically strong measures for visual ability is a gap in current clinical practices and research.