Training across cultures: Learning from a

project developing and delivering parent

training in autism in south-east Europe

David Preece (University of Northampton)

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Content of this presentation

• Rationale for/overview of the ESIPP project

• Work undertaken so far

• What have we learned

• Implications for future activity

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Autism

• Autism is a lifelong pervasive developmental disorder

• Prevalence: about 1 in 100

• Characterised by differences and difficulties affecting: • social interaction • social communication • the ability to think and act flexibly • the perception and management of sensory stimuli

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Potential impact of autism on the family

• Overwhelming evidence that autism can significantly affect family and family functioning

• Causes greater parental anxiety/stress than any other disability

• Wide range of challenges including: • Eating, toileting, self-care • Inappropriate social behaviour • Sleep issues • Impact of fixed routines • Behaviour problems

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Parent training (1)

• Important tool to support families and help those with autism

• Why? • Traditional/typical parenting

strategies won’t work • Develop skills, self-efficacy • Myriad of unreliable approaches

and ‘cures’ – so need to teach what is identified good autism practice

Parent training (2)

• Range of parent training models in existence • Some based on specific approaches (e.g. TEACCH, ABA, Floortime) • Some more eclectic (e.g. NAS EarlyBird) • Research shows:

• Parent training about autism is valued by parents • Reduces parental stress • Benefits maintained over time

• But… • Problems with attendance, child care, waiting times, access, distance,

intrusiveness • Models based on US/UK/W Europe – unavailable (inappropriate?) for other

settings, such as SE Europe

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What is ESIPP?

• 3 year project running from September 2015-August 2018 • Funded by the European Commission Erasmus+ Programme – Key Action 2 Strategic

Partnership: €432,210 • Partners from Belgium, Croatia, Cyprus, Former Yugoslav Republic of Macedonia and

United Kingdom • Focus – parent education and training for parents of children on the autism spectrum in

3 south-east European countries where diagnosis and service provision in autism is emergent

• For more information: see www.esipp.eu

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Croatia

• Croatia is a country of over 4 million inhabitants with most of the population concentrated in Zagreb, Split, Rijeka and Osijek

• Population is over 90% ethnic Croat, with about 4% Serbs and smaller numbers of Bosniaks, Hungarians, Italians, Slovenes, Germans, Czechs, Romani and others

• About 1500 people identified as having an autism spectrum disorder in Croatia, mostly under the age of 18. This indicates an identified prevalence of about 4 per 10,000

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What training opportunities are available? Croatia

• Small number of specialist institutions providing services, support and

information to families

• NGOs providing early intervention programmes.

• Parent organisations – organised events re PECS, DIR (Floortime), ABA and sensory integration

• Generic programmes for families with children with disabilities.

• Opportunities limited, often time-limited projects and inaccessible to most

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Cyprus

• Cyprus is a small EU member state with a

population of 858,000. • On-going political conflict between Greek- and

Turkish-Cypriot communities • About 20% of residents are non-nationals

(other EU-citizens and third party nationals). • The economy is largely based around the

service sector, and the country – like many others – is currently facing an economic crisis.

• Prevalence of autism – no official figure.Mazi4Autism gives an estimate of 2500 people living with autism

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What training opportunities are available? Cyprus

• One-day autism awareness seminars provided by HEIs and the government

• Some parent organisations provide services and hold occasional ad hoc seminars/conferences. e.g .mazi4autism.

• Other parent groups provide mutual support

• NGOs and private initiatives provide services/training re assistive technologies and structured approaches such as PECS, ABA and TEACCH

• Limited parent training informed by NAS EarlyBird has also been provided.

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FYR of Macedonia

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• Land-locked country bordered by Kosovo to the northwest, Serbia to the north, Bulgaria to the east, Greece to the south, and Albania to the west.

• Population of 2 million, a quarter of whom live in the capital Skopje

• Population 65% Macedonian, 25% Albanian, remainder Serbs, Turks and Romani

• EU candidate state • Prevalence of autism - unknown

What training opportunities are available? FYR of Macedonia

• FYR of Macedonia has 3 autism-specific parent organisations: these are young organisations, organising information sessions and fund-raising events.

• Generic disability parent organisation has run one seminar on PECS and one on ABA for a few families.

• MSSA provides free lectures about autism and specific approaches, such as PECS and TEACCH

• However most events are on an ad hoc basis and are inaccessible to most families.

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The ESIPP Partnership

…plus non-funded parent organisations in Croatia (ACAP), Cyprus (Limassol Autism Parent Group) and the Former Yugoslav Republic of Macedonia (NAA)

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ESIPP – Objectives of the partnership

• Develop an evidence-based model for delivering parent education in autism

• Develop a core curriculum and locally appropriate parent education training materials

• Use these materials to provide parent education to families living with autism in Croatia, Cyprus and the FYR of Macedonia

• Evaluate the effectiveness of the materials and the impact of the training using quantitative and qualitative data collection and analysis

• Share the model curriculum, tools and materials with stakeholders and make recommendations to policy- and decision-makers across Europe

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Initial survey of parents to inform planning

Who did we survey?

• 253 questionnaires were distributed and 148 were

returned – overall response rate of 58%.

• Thirty per cent of returned questionnaires were from Croatia, 45% were from Cyprus, and 25% were from the former Yugoslav Republic of Macedonia.

• Response rate by country ranged from 51% in

Cyprus to 76% in the former Yugoslav Republic of Macedonia.

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Survey of parents

What did we find out ? Delivery of training

• High interest in parent training: 89% of respondents wished to participate • Interest lowest (75%) in Croatia and highest (92%) in FYR of Macedonia. • Potential barriers to participation.

• Parents’ work schedules (40% of respondents) • Child care issues (25%)

• Majority of respondents across all three countries favoured training sessions at the weekends.

• As a result of this, initial parent education sessions (beginning in spring/summer 2016) will follow a 2-day weekend training model.

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Survey of parents

What did we find out? Content • Respondents were asked about what should be included within the programme. • Topics identified within 6 domains, derived from the review of the literature and pre-

existing training models • Awareness and information • Communication • Specific approaches • Behaviour and self-care skills • Socialisation and relationships • Leisure and recreation

• Twenty-nine individual topic areas identified within these 6 domains 2015-1-UK01-KA204-013397

Survey of parents

Chi-square analysis identified significant differences between countries concerning 13 of the 29 topic areas, across all 6 domains.

Variation in parents’ interest in training topics between countries Topic Domain x2 Significance Strategies on dealing with sexuality and relevant adolescence issues V 44.01 .001 Improving communication at home II 34.8 .001 Policy, legislation and rights I 30.34 .001 Awareness and help in the community I 27.35 .001 Identifying and developing leisure activities for child VI 23.71 .001 Issues of sexuality and/or relationships V 18.92 .001 Developing strategies to engage the child with other children and people in leisure activities VI 17.69 .001 Strategies on changing specific behaviours at home and in the community IV 14.52 .001 Structured approaches (e.g. ABA, PECS, TEACCH) III 9.62 .01 ‘High tech’ alternative communication (AAC) II 9.47 .01 Strategies on managing aggressive and/or self-injurious behaviour IV 9.11 .02 Strategies on developing child’s self-care skills IV 8.61 .02 Sensory integration and development III 8.45 .02

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Survey of parents

• Parents in FYR of Macedonia expressed interest in training in a much wider range of topics (n=21) than those in Croatia (n=12) or Cyprus (n=8)

• Five topics were identified as core to the parent education programme, having been prioritised by >60% of respondents in all three countries

• Strategies for enhancing my child’s communication • Strategies on facilitating my child’s interaction with other children • Sensory integration and development • General information on behavioural management strategies • Identifying and/or developing socialization opportunities

• Core parent training has focused on these topics – ‘Positive Approaches to Autism’ • Local bespoke training addressing wider topics prioritised by counties/arising through training

process

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Initial training activity

• Work on content winter 2015-16

• First training sessions in Zagreb, Limassol and Skopje, spring 2016 (external trainers with translation) – 20+ parents per session

• Bespoke training in Rijeka and Skopje

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Issues arising: 1

• Working as a multi-national team

• Project team includes parents, practitioners, academics and individuals on the autism spectrum

• Differing priorities, perspectives and understandings about project • Differing norms and expectations (ethics, authorship, publication)

• Working in English as a second language

• ‘if it can be misunderstood, it will be…’ – work at appropriate pace, ensure clarification • Privileging perspective of native English speakers – take active steps to prevent this

• Cultural, political and historic tensions

• they can and will impact and need to be dealt with openly and honestly with a focus on outcomes

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Issues arising: 2

• Cultural and local issues • Work to address barriers – geographical, social, cultural, language • Different levels of knowledge about autism, and different understandings of

what autism is • Developed ‘fact sheet’ to get everyone ‘on same page’ • Need to focus on principles – not equipment. Be realistic about resources.

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Issues arising: 3

• Similarities are a bigger issue than the differences

• Families in all the three countries are experiencing similar issues/similar

behaviours/similar tensions

• BUT – training must take account of the impact of context • e.g. Cyprus – grandparents often the main carers, but not using internet • Macedonia – Students attend school in 2 shifts (morning/afternoon). No meals provided.

So generally one parent at home unpaid looking after child/transporting

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Issues arising: 4

• Family-professional relationships may not be the same as typical in UK

• Services primarily based within medical model • Professionals may have limited expertise • Range of parental involvement (v. limited to v. present) • External ‘experts’ = the answers • Parents unused to training – ‘felt like I was taking an exam…’

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Issues arising: 5

• Cannot assume that all on training team (trainers, translators) will have same understanding of autism/setting

• Pre-training and debriefing vital to clarify • Important that external trainers spend time in local schools and homes to see

practice/develop understanding of setting (avoid ‘flying faculty’ approach) • Role of translators/local trainers – needs to be very clear (especially if used to

working as autonomous professional). Content being ‘co-created’ – not pure translation of ‘external expert’

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Next steps

• Further trainings taking place in autumn 2016 and spring 2017

• Continuing with formal evaluation of project

• Continuing with development of local training teams

• Recruiting next cohort of parents in different locations

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