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Improving Outcomes for Families of Children with CP with a Parenting Intervention combined with Improving Outcomes for Families of Children with CP with a Parenting Intervention combined with Acceptance and Commitment Therapy Whittingham K , Sanders, M. R. Mc. Kinlay, L. & Boyd R. N. Koa Whittingham Email: [email protected] edu. au Twitter: @Whittingham. Koa Blog: Parenting from the Heart www. koawhittingham. com/blog/

Cerebral Palsy • 2 -2. 5 of every 1000 live born children • permanent Cerebral Palsy • 2 -2. 5 of every 1000 live born children • permanent disorders of the development of movement and posture • attributed to nonprogressive disturbances in the developing foetal or infant brain

Cerebral Palsy • 1 in 4 has a behavioural disorder (Novak, Hines, Goldsmith, & Cerebral Palsy • 1 in 4 has a behavioural disorder (Novak, Hines, Goldsmith, & Barclay, 2012) • 7 in 10 preschoolers show significant delay in social milestones with continued social difficulties at school age (Parkes et al. , 2009; Whittingham, Fahey, Rawicki, & Boyd, 2010)

Paucity of research: no RCTs Paucity of research: no RCTs

Parents of children with CP • Increased burden of care • Ongoing grief (chronic Parents of children with CP • Increased burden of care • Ongoing grief (chronic sorrow) • 5 times more likely to be experiencing very high stress • 4 times more likely to have elevated anxiety symptoms • 5 times more likely to have moderate depressive symptoms (Parkes, Caravale, Marcelli, Franco, & Colver, 2011) (Barlow, Cullen-Powell, & Cheshire, 2006; Lach et al. , 2009).

Could ACT be beneficial? Could ACT be beneficial?

Experiential avoidance: a significant, unique predictor Experiential Avoidance: 17. 47% psychological symptoms 8. 24% Experiential avoidance: a significant, unique predictor Experiential Avoidance: 17. 47% psychological symptoms 8. 24% parenting burden 13. 76% grief symptoms Child Behaviour: 3. 35% psychological symptoms 6. 55% parenting burden

Needed: RCTs of ‘thirdwave’ parenting interventions Needed: RCTs of ‘thirdwave’ parenting interventions

It’s time… for a trial • First RCT of parenting intervention for the CP It’s time… for a trial • First RCT of parenting intervention for the CP population • Test, via an RCT, the additive benefits of ACT above and beyond parenting intervention Registered with: Australian New Zealand Clinical Trials Registry (00336291) Ethics approvals: Queensland Children’s Health Services Human Research Ethics Committee (HREC/09/QRCH/125) The University of Queensland Behavioural and Social Sciences Ethical Review Committee (2009001871) Cerebral Palsy League Research Ethics Committee (CPLQ-2010/11/1033).

Primary and secondary outcomes • Primary outcomes: • child behaviour problems (ECBI & SDQ) Primary and secondary outcomes • Primary outcomes: • child behaviour problems (ECBI & SDQ) • dysfunctional parenting styles (Parenting Scale) • Secondary outcomes: • • child functional performance (PEDI) child quality of life (CP-QOL) parental psychological symptoms (DASS) experiential avoidance (AAQ-adapted parenting disability) • Parenting confidence (CP Daily Tasks Checklist) • Experienced parenting burden(CP Daily Tasks Checklist) • Parental attitude to child’s emotions (Parent beliefs about negative emotions questionnaire)

 • Recruited parents of children (2 -12) with Cerebral Palsy (all severity levels) • Recruited parents of children (2 -12) with Cerebral Palsy (all severity levels) from across QLD. • Recruitment via QCPRRC database, Cerebral Palsy League, Queensland Cerebral Palsy Register and Queensland Cerebral Palsy Health Service

80 participants (13 failed to proceed) 22 SSTP 23 SSTP + ACT 22 WL 80 participants (13 failed to proceed) 22 SSTP 23 SSTP + ACT 22 WL Follow up nearly finished!

Key Sample Characteristics Key Sample Characteristics

Results Analysis: ANCOVA comparing three groups at post with preintervention scores as covariate and Results Analysis: ANCOVA comparing three groups at post with preintervention scores as covariate and linear contrasts Significant differences were found for child behaviour, child quality of life, child functional performance, dysfunctional parenting style and parental psychological symptoms No significant differences were found in experiential avoidance, parental confidence, experienced parenting burden or parental attitude to child emotions

Summary of Significant Results Summary of Significant Results

Child Behaviour: ECBI Intensity Child Behaviour: ECBI Intensity

Child Behaviour: ECBI Problem Child Behaviour: ECBI Problem

Child Emotional Symptoms: SDQ Child Emotional Symptoms: SDQ

Child Hyperactivity: SDQ Child Hyperactivity: SDQ

Child Functional Performance Mobility: PEDI Mobility Child Functional Performance Mobility: PEDI Mobility

Child Quality of Life: CP-QOL Social Wellbeing and Acceptance Child Quality of Life: CP-QOL Social Wellbeing and Acceptance

Child Quality of Life: CP-QOL Feelings about Functioning Child Quality of Life: CP-QOL Feelings about Functioning

Child Quality of Life: CP-QOL Family Health Child Quality of Life: CP-QOL Family Health

Parenting Style: Overreactivity Parenting Style: Overreactivity

Parenting Style: Verbosity Parenting Style: Verbosity

Parent Psychological symptoms: DASS Depression Parent Psychological symptoms: DASS Depression

Parent Psychological symptoms: DASS Stress Parent Psychological symptoms: DASS Stress

What does it mean? • Stepping Stones Triple P + ACT is an effective What does it mean? • Stepping Stones Triple P + ACT is an effective intervention for child behaviour problems and dysfunctional parenting styles in the CP population • Results are suggestive of an additive effect of ACT, above and beyond parenting interventions

Parenting and ACT: Future Directions • Greater sample sizes • Integration: build ACT into Parenting and ACT: Future Directions • Greater sample sizes • Integration: build ACT into parenting intervention • Web-based delivery • Better measurement • IRAP • Quality of Life • Parent-child relationship

Thank-you This research was supported by an NHMRC Postdoctoral fellowship Cerebral Palsy League, Queensland Thank-you This research was supported by an NHMRC Postdoctoral fellowship Cerebral Palsy League, Queensland Cerebral Palsy Register and Queensland Cerebral Palsy Health Service assisted in recruitment Felicity Brown, Catherine Mak and Diana Wee assisted in intervention delivery The biggest thanks goes to the awesome parents who took time out of their busy lives to participate in my research and meet their own parenting goals! Connect with me Email: [email protected] edu. au Twitter: @Whittingham. Koa Blog: Parenting from the Heart www. koawhittingham/blog/