Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice.

PURPOSE: Evidence for the importance of focusing on participation to promote health and wellbeing in childhood-onset disability exists, but practice is slow to change. This paper provides a knowledge translation roadmap to accelerate uptake of participation evidence into day-to-day practice. MATERIALS AND METHODS: A structured roadmap to guide knowledge translation initiatives for implementing participation-based practices in co-creation with service users was developed based on elements from: the Five-factorframework for predicting implementation outcomes, the Cultural Cone framework, and the Knowledge-to-Action model. RESULTS: Guiding principles paired with examples of multi-component knowledge implementation strategies to facilitate readiness for change by stakeholders at the micro (e.g., client/family, service providers), meso (e.g., administrators within organisations such as rehabilitation centres, hospitals, schools) and macro (e.g., local and governmental policy, regulatory bodies) levels are introduced. Solution-based strategies are provided to facilitate "readiness to change" for each stakeholder group. The strategies are examples for successful implementation of evidence-based interventions/approaches that can be contextualized across settings. CONCLUSIONS: The knowledge translation roadmap can assist children and families, service providers, administrators, and policymakers to bridge existing knowledge-to-practice gaps surrounding participation. Partnering and collaborating through a "family-clinician-manager-community leader-policymaker" synergy is key for achieving strategic practice change focussed on participation.Implications for RehabilitationSound evidence surrounding the topic of participation, including effective assessments and interventions, is available and ready for use.Shifting towards participation-focused practices for children and youth with disabilities requires a systemic multi-level KT approach.Our Participation-KT roadmap, comprised of a framework and a list of principles and strategies for implementation, can be used to guide all stakeholders to foster a shift in practice.Forming partnerships and working collaboratively with all stakeholders is key for successful implementation.

Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study.

PURPOSE: Children and adolescents with cerebral palsy have diverse needs and often engage with healthcare services, including paediatric rehabilitation. Partnering with these children and adolescents on research projects to inform practice has the potential to ensure services continue to remain relevant and appropriate. This study aimed to identify what children and adolescents with cerebral palsy suggest are effective ways for researchers to involve them as partners in research. MATERIALS AND METHODS: This qualitative study was guided by interpretive description. Children and adolescents with cerebral palsy between 8 and 18 years participated in semi-structured, activity-based focus groups or interviews. Verbatim transcripts were coded and analysed using thematic analysis. One member of the research team was a young woman with cerebral palsy. RESULTS: Seventeen children and adolescents with cerebral palsy from NSW and Victoria (Australia) were involved. Participants were between 8 and 18 years (mean = 12 years), male (n = 11) and female (n = 6). Analysis identified four nested themes: "insider knowledge", "reasons for involvement", "roles in research" and "facilitating partnership". CONCLUSION: This study identified perspectives of children and adolescents on their involvement as research partners, and considerations for researchers to facilitate involvement of children and adolescents with cerebral palsy as partners in research.IMPLICATIONS FOR REHABILITATIONThe commitment in healthcare to client-centred practice requires that consumers, including children and young people with cerebral palsy, have opportunities to influence the direction of research which impacts them.Children and young people with cerebral palsy are interested in research partnerships and motivated to be involved in various areas of research.Effective research partnerships with younger populations can be facilitated by researchers acknowledging a child or young person's expertise, and employing strategies relating to open communication, flexibility and support.

Constraint-induced movement therapy in the treatment of the upper limb in children with hemiplegic cerebral palsy.

BACKGROUND: Children with hemiplegic cerebral palsy learn strategies to manage daily tasks (for example play) using one hand and often the affected limb is disregarded or not used. Constraint-induced movement therapy (CIMT) is emerging as a treatment approach for use with children with hemiplegic cerebral palsy. It aims to increase spontaneous use of the affected upper limb and thereby limit the effects of developmental disregard. CIMT is based on two fundamental principles: constraint of the non-affected limb and massed practice of therapeutic tasks with the affected limb. OBJECTIVES: The objective of this review was to evaluate the effectiveness of CIMT, modified CIMT or Forced Use in the treatment of the affected upper limb in children with hemiplegic cerebral palsy. SEARCH STRATEGY: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2006, Issue 3), MEDLINE (1966 to August Week 4 2006), CINAHL (1982 to July Week 3 2006), EMBASE (1980 to August 2006), PsychInfo (1985 to August Week 4 2006) and reference lists of all relevant articles. SELECTION CRITERIA: All randomised controlled trials (RCTs) and controlled clinical trials (CCTs) comparing CIMT, modified CIMT and Forced Use with traditional services such as occupational therapy, physiotherapy or no treatment were selected. DATA COLLECTION AND ANALYSIS: Two review authors extracted the data independently using standardised forms. Each trial was assessed for internal validity with differences in ratings resolved by discussion. Data were extracted and entered into Review Manager 4.2 where appropriate. MAIN RESULTS: Three studies met the inclusion criteria. The results of one RCT showed a trend for positive treatment effect favouring CIMT using the Dissociated Movement subscale of the Quality of Upper Extremity Skills Test (QUEST). Other outcome measures, that were without reported psychometric properties, showed significant treatment effects. A CCT demonstrated a significant treatment effect favouring modified CIMT at two and six months using the Assisting Hand Assessment (AHA). Another trial with inaccurate reporting and ambiguous methodology, showed a significant treatment effect at 6 weeks on the self care component of the WeeFIM using a Forced Use protocol. All other measures showed no significant treatment effect. AUTHORS' CONCLUSIONS: This systematic review found a significant treatment effect using modified CIMT in a single trial. A positive trend favouring CIMT and Forced Use was also demonstrated. Given the limited evidence, the use of CIMT, modified CIMT and Forced Use should be considered experimental in children with hemiplegic cerebral palsy. Further research using adequately powered RCTs, rigorous methodology and valid and reliable outcome measures is essential to provide higher level support of the effectiveness of CIMT for children with hemiplegic cerebral palsy.

Goal-directed training: linking theories of treatment to clinical practice for improved functional activities in daily life.

BACKGROUND: Goal-directed training is an activity-based approach to therapy. Meaningful, client-selected goals are used to provide opportunities for problem solving and to indirectly drive the movements required to successfully meet the task demands. This is in contrast to interventions that focus on changing body functions. Here, the principles of goal-directed training will be studied through two case studies with the aim of linking theories of treatment to clinical practice. PRINCIPLES ILLUSTRATED: The approach is based on the dynamic systems motor control theory and occupation-based therapy models, which suggest that movement patterns emerge from the interaction between the person's abilities, environment and the goal. Motor learning principles are applied to structure and schedule practice. THEORY IN PRACTICE: Four components provide the basis for goal-directed training: (1) selection of a meaningful goal; (2) analysis of baseline performance; (3) intervention/ practice regime; and (4) evaluation of outcome. Two individuals with acquired brain injury practised self-care tasks: eating and tying hair into a ponytail. Intensive training was undertaken over four weeks and the intervention outcome measured using the Goal Attainment Scale. CONCLUSIONS: The positive achievements in the self-care tasks illustrated that theories of motor control and motor learning can be applied to goal-directed training. The examples demonstrated that the approach could be applied to individuals with a range of abilities.

Feeding the infant with congenital heart disease: an occupational performance challenge.

This review article uses the Canadian Model of Occupational Performance (CMOP) as a theoretical framework to organize a discussion of the complexities of infant feeding when the infant has congenital heart disease (CHD). Literature from many fields indicates that feeding supports the physical, cognitive, and affective development of infants within their various environmental contexts. Many infants with CHD, who are now surviving in increasing numbers, experience feeding difficulties that affect their growth and development and that challenge their caregivers. The feeding experiences of infants with CHD illustrate the clinical applicability of the CMOP and the need for further research. Research using the framework of the CMOP will enable the development and implementation of evidence-based interventions that support the occupation of feeding from both the infant and the caregiver perspective.

Impact on parents of feeding young children with congenital or acquired cardiac disease.

Feeding an infant is an interactive process that facilitates social, emotional and culturally based skills. Children with congenital or acquired cardiac disease frequently require supportive regimes with regard to feeding so as to maintain weight, resulting in altered experiences for both the child and family. This study evaluated the practical, emotional and social ramifications for parents, of having a child with cardiac disease who also experienced difficulties with oral feeding. The study sampled three groups of parents who had children less than 3 years of age: those with cardiac disease who had difficulty in feeding, those with cardiac disease and no such difficulty, and those with no medical diagnosis. Parents completed a questionnaire about feeding, a time diary of activities involved in feeding, and Tuckman's Mood Thermometers, which measure anger and 'poorness-of-mood' associated with feeding the identified child. Parents of children with cardiac disease and a feeding difficulty reported a significantly more negative mood-state, and significantly longer time associated with feeding, than parents of children in the other two groups. Emerging themes from qualitative analysis of the data suggested that having a child with congenital cardiac disease producing difficulty in feeding had a strong negative impact on the whole family.