Parent education in autism: the ESIPP project

Autism Study Day, University of Northampton: 18 June 2019

David Preece PhD

Associate Professor, University of Northampton

Content of presentation

• Rationale for the ESIPP project

• What we did during the project• Development of parent education curriculum and materials

• Parent education programme

• Evaluation

• Findings and impact of the project

• Effective parent-professional collaboration• Barriers, challenges, and what helps

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Parent education in autismRationale for the project

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• Autism can have significant impact on the individual with autism and family around them – parents, siblings, wider family

• Giving parents accurate information and effective strategies through parent education can:• Help parents understand their children better

• Improve parental self-efficacy

• Help reduce parental and family stress and improve family functioning

• Lead to improved outcomes for those with autism and their families

(Chiang 2013; Cutress & Muncer 2014; Farmer & Reupert 2013)

Why is parent education in autism important?

Why is parent education in autism important?

• Typing ‘autism +’ into Google:• treatment – 4.21 million• cure – 53.9 million

• Traditional/typical parenting strategies will probably not be effective

• Host of of unreliable approaches and ‘cures’ – so need to teach what is identified good autism practice

Parent education in autism

However…

• Support for families living with autism/parent education very limited in south east Europe

(Delfos 2010; Kulla and Gjedia 2015; Salomone et al 2015)

• Parent education (PE) based on US/UK models – may not be locally appropriate

(Birkin et al 2008; Chiang 2013; Perepa 2014)

• ESIPP project – developed to address this gap in provision

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The ESIPP projectEquity and Social Inclusion through Positive Parenting

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ESIPP

• Equity and Social Inclusion through Positive Parenting (ESIPP)• 3 year project – September 2015-August 2018• Funded by European Commission Erasmus+ Programme ( approx. €420,000)

• Focus – parent education (PE) for parents of children on the autism spectrum in 3 south-east European countries where diagnosis and service provision in autism is emergent• Croatia• Cyprus• North Macedonia

• Partnership of academics, professionals, parents, individuals on autism spectrum• Advisory group from Northern Europe (Germany, Luxembourg,

Netherlands, UK)

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Objectives

• To develop an evidence-based model for delivering PE in autism

• To develop a core curriculum and locally appropriate PE training materials

• To use these materials to provide PE to families living with autism in Croatia, Cyprus and North Macedonia

• To evaluate the effectiveness of the materials and the impact of PE on families attending the programme

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

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Developing the curriculum:“Positive approaches to autism”

• Initial survey of families living with autism in the three countries (Preece et al. 2017)

• Review of PE literature (Preece & Trajkovski 2017) and existing models

• “Positive approaches to autism”curriculum developed

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6 core modules• Introduction to autism• Using structure and visual supports• Sensory sensitivities• Communication• Social development and interaction• Understanding and managing challenging behaviour

(12 hours)

Parent education, not training in one specific approach• Eclectic toolbox, based on

‘good autism practice’• Teaching parents the right

questions, not the right answers

Evaluation process

• Mixed methods combined process and outcome evaluation methodology (Royse et al. 2016)• Pre-PE, post-PE and follow-up parent

questionnaires • Incorporating validated QoL tool – CarerQoL (Hoefman

et al 2014)

• Interviews with sample of parents• 4-5 each national cohort

• Trainer reflective diaries/focus groups• Stakeholder conference surveys• Document analysis

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Development of local training teams

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Local teams supported by external trainers to develop their skills and deliver programme in Croatian, Greek and Macedonian

Parent education courses, March 2016-March 2018

• Five cohorts of parents have received parent education in the 3 countries (n = 335)• Croatia: Zagreb, Rijeka,

Osijek, Split

• Cyprus: Limassol, Nicosia

• FYR of Macedonia: Skopje, Veles, Ohrid, Bitola, Debar

• No charge to participants

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Parent education courses

• Positive approaches to autism’ programme• Interactive presentations

• Group activities

• Opportunities for individual consultation/problem-solving

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Stakeholder conferences, March 17-March 18

• Conferences:• Zagreb, Northampton,

Skopje, Limassol

• Presented project to policy-makers, professionals and parents (n = c450)

• Feedback about project

• Raising awareness about autism & parent education to media 2015-1-UK01-KA204-013397 15

Impact of ESIPP project

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Initial parent survey

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• Families in Croatia, Cyprus & FYR of Macedonia• 253 questionnaires distributed, 148 returned (58%)

• High interest in parent education –• almost 90% of respondents

• Potential barriers• child care• work schedules• travel

• Parents most interested in locally available courses

Findings from project evaluation

Total number of parents trained: 335

Total number of pre-and post-PE surveys returned: 152 (45.4%)

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Questionnaires

Participants agree/strongly agree with the following statement after attending ESIPP training (n=152)

%

I feel I have a good understanding of autism 79%

I can predict when my child’s behaviour will become difficult 73%

I can communicate effectively with my child 73%

I can help my child to express his/her needs/or to communicate effectively 72%

I can respond to broader family’s comments and concerns about my child 71%

I can manage situations so that problems are often prevented 70%

I can handle family/sibling’s stress 54%

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Questionnaires

What were the main things that participants got from attending the ESIPP parent education sessions (n = 152)

%

Practical strategies to use with my child 84%

Ideas to help me keep my child happy 73%

Increased knowledge about autism 71%

Social opportunities for my child 47%

Developed support network through meeting other parents 40%

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Impact on parental quality of life

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Fullfillment Relationalproblems

Mentalhealth

problems

Problemscombining

my caretasks

Financialproblems

Support Physicalhealth

Happiness

Before parent education After parent education

Wilcoxon Signed Ranks Test has shown statistically significant differences on Happiness scale (p= 0.001)

Interviews: experience of parent education

• Parents expressed positive experiences of ESIPP seminars• “Those workshops are really good, for me, we have learned a lot and they

explained a lot to us, how to behave in certain situations and everything…”

• “It is very good, we learned a lot of things…I'm telling you it was very useful because it's face to face. They are very vivid with examples... It's nice. It is something that anyone can watch and understand what they say. They do not talk about scientific terminology and things.”

• “It helps you psychologically… That you are not alone, you as a parent.”

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Interviews: impact of parent education

• Can now recognise factors that may affect/disturb the child which they did not know until the seminar and use appropriate strategies.• “When I find myself in a situation I remember the workshop. Most about food with P. I’m

telling the same recommendations to other people…It suits me, the training completely suits me.”

• “Well for me it is sensory…and integration…yes sensory because D was very sensory…so that really helped me a lot.”

• “Maybe most useful part was with making that schedule. I think that really helped. We started to use that in school also, those visual schedules.”

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Ongoing training in south east Europe

• Training teams continuing to provide training to parents in Croatia, Cyprus and North Macedonia

• Parent training extended to e.g. Kosovo

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Further EU-funded project

• Need identified for improved teacher training regarding autism

• Further Erasmus+ project (September 2018 –August 2020) training specialist teachers in Croatia, Poland and North Macedonia

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ESIPP training materials – free to download

• All ESIPP materials (curriculum, presentations and trainer notes) can be downloaded for free from the ESIPP website• www.esipp.eu

• Or the Erasmus+ project results platform• https://ec.europa.eu/programmes/erasmus-

plus/projects/eplus-project-details/#project/2015-1-UK01-KA204-013397

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Collaboration between professionals and parentsWhat helps?

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Successful collaboration between parents & professionals

• ESIPP – example of successful collaboration between professionals & parents.

• But not always the case!

• Think of a situation where ‘working together’ was ineffective• What were the barriers/challenges?

• What was the impact

• For professionals?

• For parents?

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What helps?

• Four consistent key factors impacting on effective partnership working with families:

• worker attributes, including their professional competence

• the development of meaningful partnerships, and working to a shared agenda

• supporting the family to develop their skills

• appropriate, individualised support.

Professional attributes

• Peeters & Jordan (1999): imaginativeness, adaptability regarding communication/social interaction, teamwork, flexibility and humility– as well as being ‘bitten by the bug of autism’.

• Professionals who:

• understand each other’s perspectives, experience, skills and constraints

• acknowledge the limits of personal and professional competence

• are willing/able to be innovative

Meaningful partnerships & shared agenda

• Many barriers to effective partnership working –institutional/personal

• Need common focus on positive outcomes for child/family

• Broader Autism Phenotype: parents/family members may share some thinking styles/characteristics of autism…• And so may professionals

• And not a reason NOT to work together effectively

• Key issues• Acknowledging family perspectives

• Supporting family to identify which concerns take precedence

• Ensuring priorities are realistic/achievable

Supporting the family to develop their skills

• What do families need to know?

• The same things as professionals:• accurate information about

autism

• current evidence-based ‘good autism practice’

• positive strategies to work effectively with their children

Appropriate individualised support

• No ‘one size fits all’ approach: professional support for/partnerships with families must be individualised to take account of their strengths, needs and situations, e.g.• Some families may have a limited understanding

of autism, while others may be extremely well informed (which can be challenging for professionals).

• Some families may be resilient, while others may be highly vulnerable.

• Professionals need insight into and empathy with all family’s experience (parents, individual with autism, siblings), not just on what they see as ‘optimal outcome’ from their professional perspective.

What can you do to make collaboration work better?

• Whether you are a professional, parent or individual on the spectrum (or a combination of the above) there are things we can all do to make working in collaboration more effective

• What can you do: • Differently?

• Better?

• More of?

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Thank you to all partners in the ESIPP project

Sanja Aguila-Muñoz, Aurélie Baranger, Paul Bramble, Angela Capper, Nefi Charalambous Darden, Cristina Fernández Álvarez de Eulate, Ron Fortuna, Jasmina Frey Škrinjar, Julia Hardcastle, Stalo Gerolemou, Filip Jurtoski, Alexis Kokkinos, Katerina Mavrou, David Preece, Ana Ružić, Ana Shikaleska, Jasmina Stošić, Loizos Symeou, Eleni Theodorou, Vladimir Trajkovski, Jasmina Troshanska, Angela Winstanley.

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Disclaimer

The European Commission support for the production of this publication does not constitute an endorsement of the

contents which reflects the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.

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