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 • 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

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)

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)

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 reasoning to make decisions about interventions that are effective for specific clients’ (Law & Baum, 1998, p 131)

Levels of Evidence Level Type of Evidence 1 a Systematic Review or Meta-Analysis of RCTs 1 b A single Randomised Controlled Trial (RCT) 2 a Systematic Review of Cohort Studies 2 b A single Cohort Study 3 a Systematic Review of Case Control studies or Quasi Experimental studies 3 b A single Case Control Study or Multiple Baseline SCED design 4 Non experimental descriptive studies eg correlation studies and other single case experimental designs 5 Expert opinion, textbooks, “first principles” research

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.

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).

Challenge of EBP in PMLD - 2 Research – Practice Gap (Burton & Chapman, 2004; Mansell, 2010; Mc. Donnell & 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

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)

EBP and SLT: A worked example: • Reviews identified 6 approaches with some evidence: Intensive Interaction, Switchbased, 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

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

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 3 b and 4

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 attention of others and understand, make and convey choices. • May lead into more advanced AAC, i. e. augmentative & alternative communication

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. , 2006 a & 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: 3 b

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.

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 -3 b/4 BUT only one study

Clinical expertise Survey of UK SLTs working with children and adults with PMLD: Selected Aims • To determine what communication 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)

Frequency of Use by SLTs (n=55) (Goldbart, Chadwick & Buell, In preparation) Intervention Overall Adult Child N % N % Intensive interaction 47 85. 5 32 91. 4 23 79. 3 Objects of Reference 40 72. 7 27 77. 1 20 69. 0 Creative Arts / Multisensory 24 3. 7 14 40. 0 15 51. 7 (Communication Passports) 17 30. 9 15 42. 9 4 13. 8 (Symbolic interventions) 16 29. 1 8 22. 9 12 41. 4 Environmental Modification 15 27. 3 10 28. 6 8 27. 6 Staff Training 15 27. 3 13 37. 1 4 13. 8 6 10. 9 5 14. 3 2 6. 9 Switch-based cause & effect

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)

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

Implications for EBP Intervention approach Research evidence Clinical expertise Parent values Microswitching Quite strong Many 3 b Some & growing Many 3 b/4 Very limited 1 x 3 b/4 Limited support 10. 9% Strong support 85. 5% Strong support 72. 7% Limited support Intensive interaction Objects of Reference Limited support

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.

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.

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