Rachel Feeney

Prevalence and predictors of advance directives in Australia

Advance care planning is regarded as integral to better patient outcomes, yet little is known about the prevalence of advance directives (AD) in Australia.

Systematic review of early intervention programmes for children from birth to nine years who have a physical disability

AIM To systematically review the literature on the effectiveness of early intervention programmes for children with physical disabilities. METHODS Twelve electronic databases were searched for articles published between 1990 and April 2008. The quality of articles was appraised using an adapted version of the Checklist for the Evaluation of Research Articles and the Physiotherapy Evidence Database (PEDro) scale. RESULTS Ten studies were included in the review. Cross-sectional and interrupted time-series studies were of moderate methodological quality, whereas the non-randomised control trial was of moderate-to-high methodological quality. Studies differed considerably with respect to participants, types of intervention and outcomes measured. CONCLUSIONS Positive outcomes for both children and families have resulted from early intervention. However, methodological limitations hamper a more rigorous analysis of findings across studies.

Health-related quality-of-life of children with speech and language difficulties: A review of the literature

Abstract A review of the literature has been undertaken to examine health-related quality-of-life (HRQoL) of children and adolescents with speech and language difficulties (SaLD), with a particular focus on evidence regarding the domains of HRQoL most affected by SaLD. Twelve electronic databases were searched for articles on this topic published from 1966 to January 2011. Seven studies suitable for inclusion were identified. These papers were reviewed in relation to their participants, sample size, study design, and outcome measures, which differed considerably across studies. From the studies reviewed, there is emerging evidence that HRQoL can be compromised for children and adolescents with SaLD relative to their peers, and some consensus that the social domain of HRQoL is most impacted. Overall, the review highlights a paucity of research in this area and recommendations are made as to how research may advance. Most importantly, studies examining the effect of child and family factors in mediating or moderating the relationship between SaLD and HRQoL are required. This knowledge will support the identification of children with SaLD at risk of poorer HRQoL outcomes and inform intervention strategies through the identification of relevant risk and protective factors.

From policy to practice: A program logic approach to describing the implementation of early intervention services for children with physical disability.

The benefits of providing early intervention services (including multidisciplinary therapy and family support) for children with physical disabilities and their families are widely acknowledged. Evidence, however, of their efficacy is not well documented. Furthermore, many studies fail to adequately describe the programs being evaluated and how these programs have been implemented by service provider organisations. From a policy perspective, evaluators need to be mindful of contextual variations in program implementation when examining initiatives and determining their efficacy. In this paper we discuss how implementation of a cross-organisational early intervention initiative policy for children with physical disabilities was enacted by three different service providers. In the present study, program logic was employed to identify and explore these variations in implementation. While each individual agency provided services and identified outcomes that were consistent with policy objectives, program delivery varied considerably across service providers.

Personal and Contextual Factors Affecting the Functional Ability of Children and Adolescents with Chronic Pain: A Systematic Review.

Objective: Chronic pain can significantly impair functioning of children and adolescents; however, evidence suggests that current psychological approaches have limited effect on functioning post treatment. The objective of this review is to present the current evidence for the personal and contextual factors that affect functioning and disability of children and adolescents with chronic pain, to support the evolution of new treatments. Method: Key word searches were conducted in PsycINFO, MEDLINE via Ovid, CINAHL, and PubMed from 1995 to October 2014. Studies were included if they (1) were written in English, (2) included children or adolescents with chronic pain (>3 mo), (3) had at least 1 personal attribute or 1 contextual factor, (4) had 1 measure of functional ability, and (5) had reported correlations between personal or contextual factors and functional measure. Results: Thirty-three studies were identified which met all inclusion criteria. Several personal factors (depression, anxiety, pain intensity, and catastrophizing) and contextual/environmental factors (parenting characteristics) were consistently associated with higher levels of disability, whereas evidence for other factors was less consistent. Complex interactions between personal and contextual factors were reported. Child physical/cognitive capacities, teacher/peer behaviors, and broader cultural and environmental social systems, received little attention. Conclusion: Several parent and child factors were consistently linked with functional disability, whereas better family functioning was associated with functional ability. Applying an ecological framework, assisted identification of areas for further research, and provides direction for treatments that may be more effective in optimizing long-term functional outcomes, extending current psychological approaches.

Parent satisfaction with early intervention services for children with physical disabilities: Internal consistency of the European Parent Satisfaction Scale about Early Intervention

Measuring parent satisfaction with services is essential in the evaluation of early intervention programs. However, there is a paucity of satisfaction measures specifically developed for this purpose, and the psychometric properties of existing measures have not been widely examined. The aim of this study was to further investigate the internal consistency of 1 such measure, the European Parent Satisfaction Scale about Early Intervention (EPASSEI). A slightly modified version of the EPASSEI was completed by 112 carers (mainly mothers) of children with physical disabilities receiving early intervention services in Queensland, Australia. Internal consistency of the measure was examined using the Cronbach α. Internal consistency among items was very high (the Cronbach α = .98), with little evidence of item redundancy. Individual subscales were also shown to have a high degree of internal consistency and internal consistency was similar across the 3 service provider organizations participating in this study. The present study examined the internal consistency of an instrument measuring parent satisfaction with early intervention services. While additional examination of the validity of the measure is required, this study lends further support to the use of this measure in evaluating early intervention services for children with physical disabilities.

Service Delivery Complexities: Early Intervention for Children with Physical Disabilities.

Early intervention (EI) for children with physical disabilities is advocated as a means of enhancing child outcomes and family functioning. The issues confronted by service providers in delivering this support have received relatively little attention. The purpose of this study was to gain an understanding of the experiences of frontline EI staff delivering services to children with physical disabilities and their families. Researchers sought views about the ways in which EI programs provide services, how programs build and maintain relationships with families and team members, the prevalence of changing and unmet family needs, the presence of barriers to optimal service delivery, and recommendations for service improvement. Qualitative interviews with 10 staff members highlighted both positive aspects of service quality and issues encountered in the provision of services. Staff commented favorably on family-centered practice; aspects of service structure/delivery, including offering a wide range of supports, flexible service provision, and the focus on intervening early; and provider-related aspects including teamwork and interagency coordination and appropriate personal qualities and skills. Despite the strong endorsement of EI, participants also identified several challenges: meeting the high demand for services, under and unmet needs, and inadequate funding and staffing.

Mapping allied health evidence-based practice: providing a basis for organisational realignment

OBJECTIVE Ahead of the convergence of two major paediatric services, we examined evidence-based practice (EBP) self-efficacy, outcome expectance, knowledge and use among allied health (AH) staff in two major Queensland (Qld) paediatric services. This was to determine whether any differences existed based on organisational affiliation, profession and any previous training to inform a strategy to enhance AH EBP within the new organisational setting. METHODS All AH staff from the two Brisbane (Qld) tertiary paedritic hospitals were invited to participate in the survey. Using a cross-sectional design EBP self-efficacy, outcome expectancy, knowledge and use, as well as previous EBP training, were assessed with an online survey. Background demographic information obtained included professional discipline and hospital. RESULTS One hundreD and thirty-eight health practitioners completed the survey (37% respone rate). Most practioners had accessed EBP training. Mean scores for EBP attitudes (self-efficacy and outcome expectancy) and knowledge were higher than for EBP use scores. Greater variation was observed across professional disciplines than organisations. Training impacted positively on EBP measures but explained a small proportion of total variance in regression models. CONCLUSIONS The results underscore the need to provide organisational supports to AH staff ro EBP implementation. Strategies other than training are requred to maximally enhance EBP attitudes. The new organisational structure provides an oppotunity for this cultural shift to occur.

Contribution of speech and language difficulties to health-related quality-of-life in Australian children: A longitudinal analysis.

Abstract Purpose: The trajectory of health-related quality-of-life (HRQoL) for children aged 4–9 years and its relationship with speech and language difficulties (SaLD) was examined using data from the Longitudinal Study of Australian Children (LSAC). Method: Generalized linear latent and mixed modelling was used to analyse data from three waves of the LSAC across four HRQoL domains (physical, emotional, social and school functioning). Four domains of HRQoL, measured using the Paediatric Quality-of-Life Inventory (PedsQL™), were examined to find the contribution of SaLD while accounting for child-specific factors (e.g. gender, ethnicity, temperament) and family characteristics (social ecological considerations and psychosocial stressors). Result: In multivariable analyses, one measure of SaLD, namely parent concern about receptive language, was negatively associated with all HRQoL domains. Covariates positively associated with all HRQoL domains included child’s general health, maternal mental health, parental warmth and primary caregiver’s engagement in the labour force. Conclusion: Findings suggest that SaLD are associated with reduced HRQoL. For most LSAC study children, having typical speech/language skills was a protective factor positively associated with HRQoL.

Community knowledge of law at the end of life: availability and accessibility of web-based resources

Objective The aim of the present study was to identify online resources community members may access to inform themselves about their legal duties and rights in end-of-life decision making. Methods Resource mapping identified online resources that members of the public in New South Wales, Victoria and Queensland are likely to identify, and assessed the ease or difficulty in locating them. Resources were then critically analysed for accessibility of language and format using the Patient Education Materials Assessment Tool (PEMAT). Results Identified resources differed considerably based on whether search terms identified by community members or experts were used. Most resources focused on advance directives, enduring powers of attorney and substitute decision making. Relatively few provided information about legal duties (e.g. powers and responsibilities of substitute decision makers) or resolving conflict with health practitioners. Accessibility (understandability and actionability) of resource content varied. Conclusions Although numerous resources on end-of-life law are available online, community members may not be able to identify relevant resources or find resource content accessible. What is known about the topic? Research on participation by patients in decision making about their treatment has focused primarily on medical rather than legal knowledge. What does this paper add? The present study investigated which online resources community members may access to inform themselves about the law on end-of-life decision making. The resources identified were analysed for ease of location and content accessibility. What are the implications for practitioners? Authors of online resources on end-of-life decision making should consider whether their resources can be: (1) identified by search terms used by the public; (2) understood by a general audience; and (3) readily used to promote reader action.