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COMMUNICATION AND PMLD: THE CHALLENGE OF EVIDENCE-BASED PRACTICE

COMMUNICATION AND PMLD: THE CHALLENGE OF EVIDENCE-BASED PRACTICE. Juliet Goldbart, Susan Buell & Darren Chadwick Manchester Metropolitan University, University of East Anglia, University of Wolverhampton. Aims of Paper.

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COMMUNICATION AND PMLD: THE CHALLENGE OF EVIDENCE-BASED PRACTICE

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  1. COMMUNICATION AND PMLD: THE CHALLENGE OF EVIDENCE-BASED PRACTICE Juliet Goldbart, Susan Buell & Darren Chadwick Manchester Metropolitan University, University of East Anglia, University of Wolverhampton

  2. Aims of Paper • To consider the communication skills and needs of children with PMLD • To consider the challenges of Evidence-Based Practice (EBP) with reference to this group • To examine communication interventions appropriate to children with PMLD with reference to EBP

  3. People with PMLD 1: • Have extremely delayed in intellectual and social functioning • May have limited ability to engage verbally, but respond to cues within their environment • Often require those familiar with them to interpret their communication intent • Frequently have associated medical conditions (Bellamy et al., 2010, p.233)

  4. People with PMLD 2: Typically • Intellectual impairment is so profound that formal testing is not feasible (Nakken & Vlaskamp, 2007) • Experience profound neuromotor dysfunction (Arvio & Sillanpaa, 2003) • And sensory or perceptual disabilities (Evenhuis et al, 2001; van Splunder et al, 2003) • Communication is at a pre or early symbolic level (Iacono et al, 2009)

  5. Defining Evidence–Based Practice Derived from medical research and thinking, applied widely in health, education & social care The integration of best available research evidence with clinical expertise and patient values(Sackett et al, 1996) ‘….uses research evidence together with clinical knowledge and reasoningto make decisions about interventions that are effective for specific clients’ (Law & Baum, 1998, p131)

  6. Levels of Evidence

  7. Challenge of EBP in PMLD - 1 Production of knowledge (e.g. Burton & Chapman, 2004; Odom et al., 2005) • Challenges of controlled research studies in education and social care settings, e.g. • Controlling social variables, • Frequent staff changes, • Service emphasis on individualisation, • Complex and multiple interventions. • Low prevalence and heterogeneity of potential participants.

  8. Result? A dearth of evidence • Many interventions in learning disabilities are ‘of uncertain value and which have never been tested’ (Parmenter, 2001, p.191). • In relation to PMLD, “researchers have shown a limited interest in providing an empirical base for these interventions” (Vlaskamp & Nakken, 2008, p.334). • “randomized trials are rarely applicable for students from a low incidence population” (Snell, 2003, p.143).

  9. Challenge of EBP in PMLD - 2 Research – Practice Gap (Burton & Chapman, 2004; Mansell, 2010; McDonnell & O’Neill, 2003; Snell, 2003) • Practitioners may have limited access to research findings • Insufficiency of relevant evidence • Research findings may contradict long held beliefs and practices • Family, legal and service pressures may affect decision-making

  10. Addressing the challenges? Single Case (single subject) Experimental Designs (Kazdin, 2011; Romeiser-Logan et al., 2008) • Used to demonstrate a functional relationship between DV and IV • Each participant serves as one trial and as their own control • Quite commonly used in special education research • Practitioners can contribute to the evidence base (Cakiroglu, 2012; Horner et al., 2005)

  11. EBP and SLT: A worked example: • Reviews identified 6 approaches with some evidence: Intensive Interaction, Switch-based, Objects of Reference, Creative Arts(Warner, 2007; Young, 2011),Environmental (Vlaskamp et al, 2003; Botts et al, 2008),Staff Training(Bloomberg et al., 2003; Damen et al., 2011). • A survey of approaches used by speech & language therapists (Chadwick et al, 2009) • Interview and focus group study identified parents’ views (Goldbart & Caton, 2010) www.mencap.org.uk/node/6185#node-6185

  12. Intensive Interaction • Developed by Nind and Hewett (e.g. Hewett & Nind, 1998; Nind & Hewett, 2006). • Based on the highly responsive, individualised interactions between babies and their caregivers. • Described primarily as a way of building up enjoyable interactions between people with complex communication needs and significant others, increasing sociability. • Predominantly used in UK and Australia

  13. Intensive Interaction: Evidence • A growing number of formal evaluations since Nind (1996) including some SCEDs • Positive changes in observable behaviour related to interaction ability (Leaning & Watson, 2006). • II results in rapid increases in social engagement (Zeedyk et al., 2009). • Care staff can learn to use II but find it hard to embed in daily routine (Samuel et al., 2008). • Level of evidence: mainly 3b and 4

  14. Switch-based interventions • Using simple switches or other cause & effect devices to help people with pmld understand that their actions have consequences, i.e. intentionality. • Intentionality can be seen as a step towards intentional communication. • Can enable people with PMLD to gain the attentionof others andunderstand, make and convey choices. • May lead into more advanced AAC, i.e. augmentative & alternative communication

  15. Switch-based approaches: evidence • Lancioni et al. 2001 review paper: 20 studies, 1 to 15 pts. Mainly multiple baseline. Largely positive results. • Typically SCEDs but with few iterations • People with PMLD can learn to make and convey choices, (Lancioni et al., 2006a & b). • and to gain the attention of other people for social contact, (Lancioni et al., 2009) • Use research rather than naturalistic settings, except Barber 2000 & Singh et al 2003 • Level of evidence: 3b

  16. Objects of Reference • To signal what is about to happen and to offer choices. • A concrete link into language, through increasingly abstract representations: • Index: objects are used which are a direct part of the event they refer to. • Icon: using an object which has a concrete relationship to the action or event, but is not part of the event. • Symbol: using a more abstract representation; a transition into using a symbol system.

  17. Objects of Reference: evidence • Only one published evaluation with this client group: Jones et al. (2002) showing modest success with adults. • Very large number of web documents including school guidance, courses and information sheets, but many bear little relation to the version which was evaluated. • Type of evaluation –small quasi experimental study • Level of evidence -3b/4 BUT only one study

  18. Clinical expertise Survey of UK SLTs working with children and adults with PMLD: Selected Aims • To determine whatcommunication intervention approaches are used by SLTs working with children and adults with profound intellectual disability. • To explore SLTs’ decision-making regarding choice of interventions. (Chadwick et al., 2009; Goldbart et al., in preparation)

  19. Frequency of Use by SLTs (n=55)(Goldbart, Chadwick & Buell, In preparation)

  20. Clients’ or their proxies’ values It is difficult to access views and values of people with PMLD (Ware, 2004). • Observational approaches (e.g. Grove et al., 2000; Coupe-O’Kane & Goldbart, 1998) • Physiological measures (Vos et al., 2010) • Talking Mats (Murphy & Cameron, 2008) • Proxy perspectives: family carers & direct support staff (e.g. Goldbart & Caton, 2010; Windley & Chapman, 2010)

  21. Mencap study: Parents’ View (n~30) Communication with people with the most complex needs is most successful with familiar, responsive partners who careabout the person with whom they are communicating. Few intervention strategies were identified by parents (Intensive Interaction=2, Switching=2 Objects of Reference=1)

  22. Implications for EBP

  23. Implications: For knowledge production • More research is required for all interventions For the research – practice gap • Opportunities are missed due to limited use of switch-based interventions (Mansell, 2010), implies training and resources are required. • Practitioners need support and training accessing and appraising relevant evidence. • Involving practitioners in knowledge production using SCEDs might reduce the gap.

  24. Implications for working with family carers • Parents need more information on communication approaches used with their sons and daughters. • Parents and experienced support staff can contribute their knowledge to support choices of intervention and outcomes. • More training could be available to family carers.

  25. Thank you • Any questions? • References and slides available from j.goldbart@mmu.ac.ukor s.buell@uea.ac.uk

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