Helen Bourke-Taylor

Melbourne Assessment of Unilateral Upper Limb Function: construct validity and correlation with the Pediatric Evaluation of Disability Inventory.

The Melbourne Assessment of Unilateral Upper Limb Function (Melbourne Assessment) is an evaluation tool that objectively measures upper‐extremity function in children with cerebral palsy (CP). This study investigates how well performance on the Melbourne Assessment relates to the childs actual performance in functional tasks. Eighteen children with CP (5 to 14 years of age; nine males, nine females) were assessed using the Melbourne Assessment and the Pediatric Evaluation of Disability Inventory (PEDI). Five children had spastic quadriplegia, eight had spastic diplegia, two had spastic hemiplegia and diplegia, two had athetosis, and one had hypotonic quadriplegia with mobile ventilator dependence. Childrens performances were statistically correlated using Spearmans rho to establish the relation between these tools. Very high correlation coefficients were calculated between the Melbourne Assessment and self‐care (0.939) and mobility domains (0.783) of the PEDI and the overall functional skills section of the PEDI (0.718). The Melbourne Assessment demonstrates excellent construct validity for upper limb functioning.

Impact of caring for a school‐aged child with a disability: Understanding mothers’ perspectives

AIM Children with a disability are reliant on a capable, healthy and well-resourced carer. Most often the childs mother provides the care that ensures the childs health, service access and community integration are attended to successfully. Through in-depth interviews with mothers and professionals, this study explores issues that challenge the mothers performance in her very important role as a caregiver. METHOD Qualitative methodology(n=8)resulted in verbatim transcriptions that were analysed and categorised, and common themes were derived. RESULTS Participants identified a multitude of challenges related to issues surrounding the child, maternal characteristics, the family, services and the community. Emotional distress and mental health issues were reported. CONCLUSION Many aspects of caregiving can be relentless and challenging. Occupational therapy clinical implications aimed at supporting mothers and their children are discussed.

Development of the Assistance to Participate Scale (APS) for children's play and leisure activities.

AIM This paper describes the development and psychometric evaluation of the Assistance to Participate Scale (APS). The APS measures the assistance that a school-aged child with a disability requires to participate in play and leisure activities from the primary carers perspective. METHOD Mixed methodology using an instrument design model was used to complete two studies. First, a qualitative research design was used to generate items and scoring criteria for the APS. Second, a quantitative study evaluated the instrument using data collected from 152 mothers with children aged 5-18 years. Statistical analysis assessed the underlying structure, internal consistency and construct validity of the APS. RESULTS Exploratory factor analysis revealed two correlated components, reflecting home-based and community-based play activities. Both subscales and the total APS scale showed good internal consistency. The APS correlated as predicted with individual domains and overall scores for other validated measures (Pediatric Evaluation of Disability Inventory caregiver scales and Pediatric Quality of Life Inventory) with correlations ranging from rho = 0.42 to rho = 0.77. The APS was able to discriminate between groups of children based on type of schooling (regular or segregated), need for equipment/assistive devices, frequency of lifting and disability. CONCLUSIONS The APS provides professionals with a brief psychometrically sound tool that measures the amount of caregiver assistance provided to a child with a disability to participate in play and recreation. The APS may be used as an outcome measure and to evaluate and predict the amount and type of additional assistance families need to facilitate their childs participation in an important aspect of the childs daily life and development: play and recreation.

Self-reported mental health of mothers with a school-aged child with a disability in Victoria: a mixed method study.

Aim:  This research investigated the mental health of mothers of school‐aged children with disabilities in Victoria, Australia.

Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities

Sleep problems are more common among children with disabilities. Mothers are likely to provide night‐time care. Mothers of children with disabilities are known to experience high levels of stress and mental health issues compared with other mothers. Relationships between a childs sleep problems, and chronic maternal sleep interruption and subjective health have not been researched.

Barriers to maternal workforce participation and relationship between paid work and health

BACKGROUND Families of children with disabilities experience extra financial strains, and mothers are frequently unable to participate in paid work because of caregiving obligations. METHODS A mailed survey and follow-up phone calls were used to gather data about mothers health, workforce participation and barriers to inclusion in the workplace (n = 152). Verbatim reports of issues that hindered workforce participation were analysed qualitatively to derive themes. Maternal health-related quality of life (HRQoL) was measured using the Short Form Health Survey Version 2 (SF-36v2). Norm-based conversions were used to compare HRQoL between working and non-working mothers and to compare to population norms. RESULTS Eighty-two per cent of mothers in the sample wanted and needed to work for pay but indicated over 300 issues that prevent their work participation. Data analysis revealed 26 common issues which prevent work participation. These issues fit into three main categories: mother-related reasons (28%), child-related reasons (29%) and service limitations (43%). Mothers who worked (n = 83) reported significantly better HRQoL than mothers who did not work (n = 69) on five of the eight SF-36v2 dimensions and overall mental health. CONCLUSIONS Compared to other working Australians, mothers in this study had higher education yet reported poorer health, lower family income and lower workforce participation. Respondents reported that service system limitations were the main barriers to participation in the paid workforce. Investigation of service changes such as increased respite care, availability of outside hours school care, improved professional competency and family-centred services is recommended in order to improve maternal participation in paid work.

Evaluating the psychometric quality of social skills measures: a systematic review

Introduction Impairments in social functioning are associated with an array of adverse outcomes. Social skills measures are commonly used by health professionals to assess and plan the treatment of social skills difficulties. There is a need to comprehensively evaluate the quality of psychometric properties reported across these measures to guide assessment and treatment planning. Objective To conduct a systematic review of the literature on the psychometric properties of social skills and behaviours measures for both children and adults. Methods A systematic search was performed using four electronic databases: CINAHL, PsycINFO, Embase and Pubmed; the Health and Psychosocial Instruments database; and grey literature using PsycExtra and Google Scholar. The psychometric properties of the social skills measures were evaluated against the COSMIN taxonomy of measurement properties using pre-set psychometric criteria. Results Thirty-Six studies and nine manuals were included to assess the psychometric properties of thirteen social skills measures that met the inclusion criteria. Most measures obtained excellent overall methodological quality scores for internal consistency and reliability. However, eight measures did not report measurement error, nine measures did not report cross-cultural validity and eleven measures did not report criterion validity. Conclusions The overall quality of the psychometric properties of most measures was satisfactory. The SSBS-2, HCSBS and PKBS-2 were the three measures with the most robust evidence of sound psychometric quality in at least seven of the eight psychometric properties that were appraised. A universal working definition of social functioning as an overarching construct is recommended. There is a need for ongoing research in the area of the psychometric properties of social skills and behaviours instruments.

Development of the Child's Challenging Behaviour Scale (CCBS) for mothers of school‐aged children with disabilities

BACKGROUND Caring for a child with a disability can be especially difficult when the child exhibits challenging behaviours. Childhood disability often calls for the mother to be conscientious, capable and organized to meet the childs health and developmental needs. Mothers are known to feel particularly stressed when their child also behaves in ways that are difficult to manage. In these circumstances maternal mental health may be compromised and mothers therefore need more support. The Childs Challenging Behaviour Scale (CCBS) is an 11-item scale that measures a mothers report of challenging behaviours exhibited by their child with disability, that are associated with compromised maternal mental health and caregiving difficulties. This paper describes the initial development and psychometric evaluation of the CCBS. METHODS A mixed methodology instrument design model was used to develop the CCBS. A qualitative study generated items, and quantitative data were collected from 152 mothers of a child with a disability. RESULTS The CCBS showed excellent internal consistency (Cronbachs alpha = 0.89) and factor analysis supported its unidimensionality. Construct validity was supported by correlations with the PedsQL Psychosocial Health Summary Score (rho =-0.51) and cooperation taking medication (rho = 0.40). There were significant differences in CCBS scores between groups of children with and without either autism or psychiatric conditions. The CCBS showed moderate correlations with self-reported health status; the mothers sense of empowerment (rho =-0.44); and family cohesion (rho =-0.30). Mothers with a mental health condition recorded significantly higher CCBS scores. CONCLUSIONS The CCBS is a brief, psychometrically sound instrument that provides clinicians with a new tool that measures a mothers rating of their childs behaviours that are challenging and associated with reduced maternal well-being. The CCBS assists professionals to identify mothers and family situations who may be in need of more support and interventions.

Young children with cerebral palsy: families self‐reported equipment needs and out‐of‐pocket expenditure

BACKGROUND Costs to families raising a child with cerebral palsy and complex needs are direct and indirect. This study investigated the self-reported real-life costs, equipment needs, and associated characteristics of children who had the highest equipment and care needs. METHOD The purposive sample (n = 29) were families with a child with cerebral palsy: gross motor function levels 5 (n = 20), level 4 (n = 5), level 3 (n = 4); complex communication needs (n = 21); medical needs (n = 14); hearing impairment (n = 5) and visual impairment (n = 9). Participants completed a specifically designed survey that included the Assistance to Participate Scale. Equipment and technology purchases were recorded in the areas of positioning, mobility, transport, home modifications, communication, splinting and orthoses, self-care, technology, communication devices, medical, adapted toys/leisure items and privately hired babysitters/carers. Descriptive and inferential statistics were used to analyse the data. RESULTS Families had purchased up to 25 items within the areas described. The highest median number of items were recorded for positioning (15 items), mobility devices (9 items) and adapted toys/leisure items (9 items). Median costs were highest for home modifications (AUD

Children and Youth Instrument Development and Testing Articles Published in the American Journal of Occupational Therapy, 2009–2013: A Content, Methodology, and Instrument Design Review

23000), transport (AUD