Participatory design in the development of an early therapy intervention for perinatal stroke.

BACKGROUND: Perinatal stroke is the leading cause of unilateral (hemiparetic) cerebral palsy, with life-long personal, social and financial consequences. Translational research findings indicate that early therapy intervention has the potential for significant improvements in long-term outcome in terms of motor function. By involving families and health professionals in the development and design stage, we aimed to produce a therapy intervention which they would engage with. METHODS: Nine parents of children with hemiparesis and fourteen health professionals involved in the care of infants with perinatal stroke took part in peer review and focus groups to discuss evolving therapy materials, with revisions made iteratively. The materials and approach were also discussed at a meeting of the London Child Stroke Research Reference Group. Focus group data were coded using Normalisation Process Theory constructs to explore potential barriers and facilitators to routine uptake of the intervention. RESULTS: We developed the Early Therapy in Perinatal Stroke (eTIPS) program - a parent-delivered, home-based complex intervention addressing a current gap in practice for infants in the first 6 months of life after unilateral perinatal stroke and with the aim of improving motor outcome. Parents and health professionals saw the intervention as different from usual practice, and valuable (high coherence). They were keen to engage (high cognitive participation). They considered the tasks for parents to be achievable (high collective action). They demonstrated trust in the approach and felt that parents would undertake the recommended activities (high collective action). They saw the approach as flexible and adaptable (high reflexive monitoring). Following suggestions made, we added a section on involving the extended family, and obtained funding for a website and videos to supplement written materials. CONCLUSIONS: Focus groups with parents and health professionals provided meaningful feedback to iteratively improve the intervention materials prior to embarking on a pilot study. The intervention has a high potential to normalize and become a routine part of parents' interactions with their child following unilateral perinatal stroke.

Assessment and management of the communication difficulties of children with cerebral palsy: a UK survey of SLT practice.

BACKGROUND: Communication difficulties are common in cerebral palsy (CP) and are frequently associated with motor, intellectual and sensory impairments. Speech and language therapy research comprises single-case experimental design and small group studies, limiting evidence-based intervention and possibly exacerbating variation in practice. AIMS: To describe the assessment and intervention practices of speech-language therapist (SLTs) in the UK in their management of communication difficulties associated with CP in childhood. METHODS & PROCEDURES: An online survey of the assessments and interventions employed by UK SLTs working with children and young people with CP was conducted. The survey was publicized via NHS trusts, the Royal College of Speech and Language Therapists (RCSLT) and private practice associations using a variety of social media. The survey was open from 5 December 2011 to 30 January 2012. OUTCOMES & RESULTS: Two hundred and sixty-five UK SLTs who worked with children and young people with CP in England (n = 199), Wales (n = 13), Scotland (n = 36) and Northern Ireland (n = 17) completed the survey. SLTs reported using a wide variety of published, standardized tests, but most commonly reported assessing oromotor function, speech, receptive and expressive language, and communication skills by observation or using assessment schedules they had developed themselves. The most highly prioritized areas for intervention were: dysphagia, alternative and augmentative (AAC)/interaction and receptive language. SLTs reported using a wide variety of techniques to address difficulties in speech, language and communication. Some interventions used have no supporting evidence. Many SLTs felt unable to estimate the hours of therapy per year children and young people with CP and communication disorders received from their service. CONCLUSIONS & IMPLICATIONS: The assessment and management of communication difficulties associated with CP in childhood varies widely in the UK. Lack of standard assessment practices prevents comparisons across time or services. The adoption of a standard set of agreed clinical measures would enable benchmarking of service provision, permit the development of large-scale research studies using routine clinical data and facilitate the identification of potential participants for research studies in the UK. Some interventions provided lack evidence. Recent systematic reviews could guide intervention, but robust evidence is needed in most areas addressed in clinical practice.