IY Toddler, Autism and Foster Carer trials in Wales Judy Hutchings, Margiad Williams, Sue Evans and Bridget Roberts Centre for Evidence Based Early Intervention, Bangor University

CEBEI Toddler parenting TRial Evaluated in two PhDs: Nia Griffith, the main RCT trial Hutchings, J., Griffith, N., Bywater, T., & Williams, M.E. (2016). Evaluating the Incredible Years Toddler Parenting programme with parents of toddlers in disadvantaged (Flying Start) areas of Wales. Child: Care, Health and Development. doi:10.1111/cch.12415 Nicole Gridley, an analysis of parental language use in interaction with children Gridley, N., Hutchings, J., & Baker-Henningham, H. (2014). The Incredible Years Parent-Toddler Programme and parental language: a randomised controlled trial. Child: Care, Health and Development, doi: 10.1111/cch.12153  

Toddler parenting programme pragmatic RCT Delivered in seven Flying Start, high deprivation areas across Wales by local Flying Start staff 89 parents – 2:1 randomisation Data collected at baseline and six month follow and then at 12 months – intervention only Range of measures, parental mental health, child development, parenting stress, sense of competence Blind videotaped observation- 15 minutes free play

Toddler parenting programme pragmatic RCT Delivered in seven Flying Start, high deprivation areas across Wales by local Flying Start staff Weekly supervision based on video-tapes Significant improvements at 6 month FU for parental mental well-being, and reductions in observed negative parenting Significant improvements at 6 months in parental encouraging language

Warwick-Edinburgh Wellbeing

DPICS Observed Praise 30 minute obs

Gridley Thesis 30 min obs

Long term significant outcomes (no control group) child development, parental mental health, parental stress, and parental competence

Long-term follow-up – Child Development

Long-term follow-up – Parental mental health

Long-term follow-up – Parental Stress

Long-term follow-up – Parental competence

Conclusions IYTPP shows promise as an intervention for parents of Toddlers living in disadvantaged communities Limitations: No control group at 12 months due to wait list design Underpowered to find significant effects

IY Autistic Spectrum & Language Delays programme New addition to IY suite - 12 sessions Uses same core delivery components Promotes emotional regulation, social competence, language skills, school readiness and relationships with others

Initial Pilot Study Results published in Good Autism Practice (Hutchings, J., Pearson-Blunt, R., Pasteur, M-A., Healy, H. & Williams, M.E. (2016) A pilot trial of the Incredible Years® Autism Spectrum and Language Delays programme. Good Autism Practice Journal, 17, 15-22 ) Nine parents (8 mothers + 1 Father) All children diagnosed with ASD or undergoing assessment Significant improvement in pro-social skills and reduction in peer problems (SDQ) High rates of attendance High levels of satisfaction DVD about parents’ experiences of the IY Autism programme Still demonstrating a high level of pro-social difficulties

Application for funds for a pilot RCT The pilot showed acceptability to parents and leaders and showed significant changes This led to a grant application for a pilot RCT and this was funded by Autistica – an Autism charity

Parenting for Autism, Language, And Communication Evaluation Study Williams, M.E., Hastings, R.P., Charles, J.M., Evans, S., & Hutchings, J. (2017). Parenting for Autism, Language, And Communication Evaluation Study (PALACES): protocol for a pilot randomised controlled trial. BMJ Open, e014524. doi:10.1136/bmjopen-2016-014524 Pilot randomised controlled trial Explore feasibility and initial effectiveness 4 centres (NW Wales, Central North Wales, Flintshire & Newtown, Powys) A wide range of measures

The Welsh Context The Welsh Government was establishing new Neurodevelopmental Services and Integrated Autism Services The Welsh Government lead was already trained in the IY parent programme and enthusiastic about it Welsh Government grant funding was obtained for training and resources for the programme

Implementation fidelity Two trained group leaders with ASD experience, six of the eight leaders were clinical or educational psychologists, one a certified trainer Staff agreed 1½ days a week each to deliver the research group Staff attended three-day basic and two-day autism training plus a one-day setup training day Staff attended six three-hours fortnightly supervision sessions with video recording of session, parent evaluations etc. Staff made midweek phone calls and, where possible, home visit parents that miss sessions

Research funding provided Parent handouts, IY books, fridge magnets and raffle prizes Lunches/snacks Leader handouts Spare set of tapes and materials for home visits, and leaders to access between sessions Williams, M. E., Hastings, R., Charles, J., Evans, S., & Hutchings, J. The Parenting for Autism, Language, And Communication Evaluation Study (PALACES): protocol for a pilot randomised controlled trial. BMJ Open.

Evaluate both delivery and outcomes. Staff kept records of attendance Staff kept records of components of programme delivered Staff completed self evaluation checklists All staff and parents interviewed regarding the intervention

Data collection Baseline, 6-month follow-up for all families in June 17 Additional 12-month and 18-month follow-up for intervention families 10-minute parent-child observation videotaped

Participants - Children Demographics Whole sample (N=58) Child age, months: M (SD) 67.98 (16.14) Child gender, male: n (%) 41 (70.7) Child diagnosis, ASD: n (%) 48 (82.8)

Participants - Parents Demographics Whole sample (N=58) Parent age, years: M (SD) 36.48 (8.52) Parent gender, female: n (%) 52 (89.7) Married/cohabiting: n (%) 48 (82.8) Large family: n (%) 14 (24.1) Unemployment: n (%) 12 (20.7) Teenage parent: n (%) 6 (10.3)

Child Behaviour Problems CBCL scales Whole sample (N=58) Internalising: n (%) 48 (82.8) Externalising: n (%) 42 (72.4) Both: n (%) 40 (69.0)

Parental Mental Health Parental Stress (cut-off) All (N=57) M (SD) Above cut-off n (%) PSI Total (91) 95.07 (18.72) 37 (64.9) PSI Parental Distress (36) 30.05 (9.01) 18 (31.6) PSI Parent-Child Dysfunctional Interaction (27) 29.04 (5.81) 35 (61.4) PSI Difficult Child (36) 35.89 (7.65) 33 (57.9) Parental Depression (cut-off) All (N=54) Median (range) BDI Total (18) 6.50 (0 – 36) 8 (14.8) Parental Distress – the distress a parent is experiencing in his/her role as a parent as a function of personal factors that are directly related to parenting. Associated with impaired sense of parenting competence, stresses associated with the restrictions placed on other life roles, conflict with the child’s other parent, lack of social support, and presence of depression. Parent-Child Dysfunctional Interaction – focuses on the parent’s perception that his/her child does not meet the parent’s expectations, and the interactions with his/her child are not reinforcing to him/her as a parent. High scores suggest that the parent-child bond is either threatened or has never been adequately established. Difficult Child – focuses on some of the basic behavioural characteristics of children that make them either easy or difficult to manage.

Parenting Skills (generally reporting good parenting skills) Parenting skills (means) All (N=58) M (SD) Range Laxness (2.6) 2.72 (0.84) 1.40 – 4.90 Over-reactivity (2.4) 1.77 (0.67) 1.00 – 4.20 Verbosity (3.1) 3.07 (0.95) 1.00 – 5.30 Total (2.6) 2.63 (0.65) 1.40 – 4.50 Laxness – when parents fail to enforce or follow through with rules and limits Over-reactivity – when parents use harsh discipline strategies Verbosity – when parents ‘nag’ children with excessive instructions

Supervision (set up + 6 fortnightly sessions) 93% attendance Content fidelity (No of items delivered from 123 total) 88.4% Parental attendance Av attendance 72% -81% attended 8+ sessions (excluding 3 parents who DNA)

Parent weekly evaluations - 1 Parent weekly evaluations - 1. The video vignettes and content of this session were: Not helpful Neutral Helpful Very helpful Total Q1 1 3 114 176 294 0% 1% 39% 60%

2. The group leaders teaching and leadership skill was Not helpful Neutral Helpful Very helpful Total Q2 53 215 268 20% 80%

3. The group discussion and interaction was: Not helpful Neutral Helpful Very helpful Q3 4 2 164 458 628 1% 0% 36% 73%

4. The use of practice exercises was: Not helpful Neutral Helpful Very helpful Q4 2 15 119 149 285 1% 5% 42% 52%

5. The home activities and reading were: Not helpful Neutral Helpful Very helpful 4 87 181 272 1% 32% 67%

slightly worse the same slightly improved improved greatly improved 13 27 35 8 16% 32% 42% 9% Final evaluation – child items 3 questions final evaluations completed by 33 participants, so includes some partners/non–research participants

Parent items – 2 questions neutral slightly positive positive very positive 3 30 32 5% 46% 49%

Teaching format – 7 questions Not useful Not very useful neutral somewhat useful useful extremely useful 1 2 15 91 84 1% 8% 47% 43%

Leader items – 8 questions poor adequate good very good 2 1 68 153 1% .5% 30.5% 68%

Value of specific parenting techniques – 8 items neutral somewhat useful useful extremely useful 8 26 97 98 4% 11% 42% 43%

Overall feelings about the programme – 4 items Slightly less than positive neutral slightly positive positive very positive 16 1 7 79 13% 1% 6% 14% 66%

Additional comments from the final evaluation – how could the programme have been improved to help you more? 18 suggestions and six responses saying nothing needed n % More varied children on videos 8 44.5 Timing of groups 1 5.5 Location near to me 2 11 Longer 5 28 Better if my child was child younger Access to vignettes to see again 18 100

Improvements suggested - examples Maybe having more varied children on the videos, most of the children filmed were more able to communicate than my son I would like to have seen more challenging behaviours in the vignettes. I found the melt-downs very mild I think some of the children on the videos were quite advanced A bit more time for discussions as a group Maybe a bit longer. Sometimes there was a lot to cram into the sessions More time – two hours felt rushed A lot of information for 12 weeks, more weeks maybe

Main benefits - examples It has given me much more confidence in my parenting Be more patient and keep to it Talking things through, spending more time with my child, listening to others stories, learning about strategies – as a mum and teacher How to help my son and his behaviour It taught me to cope better and I feel relaxed and that life is easier Meeting others who are going through the same thing Meeting other parents, gaining skills/tips to help my child with her world

Lessons Start small and do pilot studies Start with volunteer leaders not conscripts Ensure that staff have experience of the needs of the target population Involve service managers and service users in the planning and research funding application

CEBEI work with Foster Carers The LiLAC trial led by Tracey Bywater The KESS funded PhD –Sue Layland

LAC in Wales Around 5000 LAC in Wales (up to 2500 with conduct problems) 14% of these had 3 or more placements in one year In 6 North Wales Authorities approx 750 LAC (53% boys) Mike Lewis-Children in Wales- states, “ care leavers are 50 times more likely to go to prison, 60 times more likely to be homeless and 88 times more likely to be involved in drug use than children and young people who have not been ‘looked after’ by local authorities”. Figures taken from WAG 2005, adoptions, outcomes & placements for LAC by local authorities, yr ending march 2005 Half 750 from 2 of the 3 authorities participating in the current research powys = 247, wham = 114) Number of Lac in wales is increasing year on year from 1997 and this upwards trend has caused strain on a generally struggling system. ALSO children are staying longer in foster care

Bywater trial evaluation questions Is the programme effective in supporting carers, increasing the toolkits they have to deal with certain behaviours, and reducing child behaviour problems in looked after children? How do carers and leaders respond to the programme and what, if any, difficulties are experienced in using the programme? How many services do LAC and their carers access, and what is the cost? WE WISH TO TRIAL THE PROGRAMME WITH YOU TO SEE WHETHER…. 1. IT IS EFFECTIVE - THERE HAS BEEN a study in the US with both foster carers and biological parents and the findings were very encouraging, but there has been nothing to date in the UK. The prog has been used with foster carers of mainly clinically referred children, but it has not been evaluated in a scientific manner.

Methodology 3 Authorities 1 intervention group & 1 control group in each area 46 LAC (24 boys, 22 girls): 29 intervention, 17 control condition with age range 2-16 years Baseline & 1 follow-up Measures 62 names originally, some could not find time, about 5 had to withdraw for various reasons. Complex sample Int = 14 girls, 15 boys, control = 8 girls, 9 boys. 18 int and 8 control received special help at school.

Intervention The IY basic 12 session parent programme Leaders attended weekly supervision with video recordings of sessions All paperwork completed

Results 1. Costs of fostering: Over a six-month period LAC accessed services to monetary mean equivalent of £3,812 (SD£3998)/child Main costs were for special education, mean £1,516 (SD£3234)/child Fees paid to foster carers averaged £9,256/carer over 6 months (dependent on age and needs of child) Cost of running IY group/family £1000 - £1300 approx. (with and without non-recurrent costs), includes crèche, clerical support, calls etc. 9 attended special ed school Both int & cont children ave. int children used more initially & at f.up - but we wouldn’t yet expect to see a change in service us over such short period of time - trying to get money for another long-term follow up. SS kids = mean of £681 over 6 months before intervention Extra funding = stuff like: additional WAG funding for training, respite care, additional bedroom furniture, foster panels, support groups etc…..

RESULTS Statistically significant benefits for intervention children and carers over control groups at follow-up on: ECBI intensity of problem behaviour, Carer reported SDQ hyperactivity levels Teacher reported SDQ hyperactivity levels Intervention carer depression levels (BDI)

Carer & Leader feedback Foster carers Carers specifically welcomed the confidential environment to trouble-shoot with other carers and to learn new ways to manage behaviour. Suggestions to lengthen the programme to 14 weeks to include more on ‘play’ and ‘problem-solving’ sessions are supported by the developer for this particular client group. Group leaders The group leaders found the programme more challenging to deliver to this client group due to the large age range of children under consideration, the carers were more questioning than parents in more typical groups and the child behaviour issues more complex.

Benefits of delivering the programme to dedicated carer groups It ensures confidentiality, which facilitates honest group discussion/problem-solving. Many issues specific to carer/looked after child relationships, coping with access, visits, rules about incentives, etc. Group leaders need relevant LAC background knowledge and skills to guide discussion on tackling them using programme principles. Carer groups should be led by LAC service personnel LAC service rules around incentives and discipline strategies need to be clear to carers and group leaders.

Published papers Bywater, T., Hutchings, J., Linck, P., Whitaker, C.J., Daley, D., Yeo, S.T., & Edwards, R.T. (2010). Incredible Years Parent Training Support for Foster Carers in Wales: A Multi-Centre Feasibility Study. Child: Care, Health and Development, 37(2), 233-243. doi:10.1111/j.1365-2214.2010.01155.x   Hutchings J. & Bywater T. (2013) Delivering the Incredible Years parent programme to foster carers in Wales: Reflections from group leader supervision. Adoption and Fostering, 37(1), 28-42. doi:10.1177/ 0308575913477075

Sue Layland KESS funded PhD project Evaluation of the IY School Age twelve session programme with foster carers, Summer and Autumn 2017 Working in one North Wales Local Authority Two groups - one with Foster Carers, one with Kinship (family) Carers. Bridget as leader and supervisor. Baseline and follow up measures (6 months). Was it just a 12 session course

Measures Look for evidence of changes in child attachment, child behaviour and carer stress levels. (O’Connor, Matias, Futh, Tantam & Scott 2013). Evaluation of usefulness with foster carers. Measures include - carer stress levels (PSI-SF, Abdin), - child behavioral measures (CBCL, Achenbach; ACC, Tarren-Sweeny), - observational measures (DPICs, Eyberg) and - indirect measures of attachment. Within and between group comparisons to see if there are similarities and/or differences between kinship and foster carer groups.

Thank you For further information see http://www.centreforearlyinterventionwales.co.uk Research website:  http://incredible-years-wales research.bangor.ac.uk Email j.hutchings@bangor.ac.uk margiad.williams@bangor.ac.uk