Parent well-being and ASD

1. Parent well-being and ASD Psychology Department Beechpark Services June 2013 Presented by: Dr. Paula Cummins, Clinical Psychologist Dr. Lorraine Crawley, Clinical Psychologist Beechpark Psychology Department June 2013

2. Overview of parent well-being • Background • Process of ASD diagnosis • Common issues as child gets older • Measurement of stress and formulation • Model of support • Stress Control programme and Beechpark research study Beechpark Psychology Department June 2013

3. Background • Impact of ASD on family • Published literature on parental stress and well-being • Commonly referenced stress models Beechpark Psychology Department June 2013

4. Expectations of parenting • Birth order of child • Early developmental history • Hope and dreams for future • Attachment and bonding with child Beechpark Psychology Department June 2013

5. ASD diagnosis • Cross-sectional ROI and NI study (Keenan et al, 2010) • Questionnaires completed by parents and multi-disciplinary professionals • Mean age at ASD diagnosis: 4 years (1.7-13 yrs range) • Time between first referral and diagnosis in the study was an average of 16 months in NI and 14 months ROI • Some pursued private diagnosis (reduced length of time between referral and diagnosis) Beechpark Psychology Department June 2013

6. ASD diagnosis • 99% of parents and professionals agreed increased support and guidance during process should be in place for families • Reports of problematic parent and professional partnerships • Parent stress: Diagnostic and planning processes Beechpark Psychology Department June 2013

7. Confirmation of ASD Diagnosis – Processing the diagnosis • Gender • Cultural issues • Emotional responses Beechpark Psychology Department June 2013

8. Confirmation of ASD diagnosis • Where next? • Informing wider family and response • ‘Battle fatigue’ • Resources for support and intervention Beechpark Psychology Department June 2013

9. Referrals across the years • Pre-school years (e.g. Toileting, sleep, eating) • Primary school years (e.g. Anger, anxiety, safety, growing up) • Secondary school years (e.g. Puberty, emotions, peer relationships Beechpark Psychology Department June 2013

10. Formulation and collaboration • Experience of diagnostic process • Expectations of parent role • Previous life history • Developmental stages • Living with Autism Beechpark Psychology Department June 2013

11. Assessment of parent stress and well-being • General screening measures • Significant life events • Care plan process – strengths and needs based • Interweaved questions on the theme ‘How is the family?’ Beechpark Psychology Department June 2013

12. Parent groups and programmes • Service groups (e.g. Early Bird) • Other agencies (e.g. Incredible Years) • Parent Community Groups • Online groups Beechpark Psychology Department June 2013

13. Model of service delivery to parents • Information (e.g. Beechpark Parent support leaflet) • Parent groups Level 1 – Education about ASD (e.g. Early Bird) • Parent groups Level 2 – Strategies to parent a child with an ASD (e.g. Emotions, Growing Up) • Individual work (e.g. Behaviour programmes) • Area identified for development: Parent well-being Beechpark Psychology Department June 2013

14. Individual coping responses • The stress response and ASD • Feeling in control over stressors • Q. What would help feeling in control over stress arising from being a parent to a child who has a diagnosis of ASD? Beechpark Psychology Department June 2013

15. Managing Stress • Parents experience more elevated stress • Service delivery model - interventions for child and family • Specific stress management interventions • Stress control as a model which we employed in our service Beechpark Psychology Department June 2013

16. Dr. Jim White, NHS STEPS Primary Care • CBT group based intervention • Psychoeducation • Controlling body, thoughts, actions, panic • Sleep, wellbeing, & controlling your future • Mild-moderate anxiety or mixed anxiety/depression • Evidence based (White, 1998; Kellett, Clark & Mathews, 2007) Beechpark Psychology Department June 2013

17. Beechpark Autism Services Research • Examining stress control intervention for parents with children with autism (Crawley, L., Cummins, P., Condon, L., Fitzpatrick, C., & O’Reilly, A.) Beechpark Psychology Department June 2013

18. Methodology • CBT ‘Stress control ‘ intervention • Convenience sample • Pre-post research design • Instruments • The parenting stress index – Short form (PSI-SF) • General Health Questionnaire (GHQ – 12) Beechpark Psychology Department June 2013

19. Group • 2 teachers • Off site community location • Open invite – “Parent wellbeing group”, stress control, no jargon • Written in parent leaflet • Team requested to alert stressed parents • Pre measures – severe level of difficulties – signposted to adult mental health services Beechpark Psychology Department June 2013

20. Findings to date • Demographic • Mothers • Mild to moderate levels of stress • Attendance remained stable Beechpark Psychology Department June 2013

21. Findings to date • Strongly related to material – “slides written for me” • Grasped Information & tailored it to meet their own needs. • Responded to didactic approach (but it became to be more discursive) • Related material to child’s experience of stress • Recognised link between personal stress & child’s stress • Acknowledgment of multiple stressors – family, marital etc • Terminology – “blinkers” • Follow up requested Beechpark Psychology Department June 2013

22. Challenges & barriers • Uptake below what expected based on interest shown • Follow ups – work, family circumstances, “too stressed”, time of day, distance • Needs of parent v’s child • Stigma? • Time commitment • The hard to reach • Attendance of fathers Beechpark Psychology Department June 2013

23. Considerations for ‘stress control’ group • Who should go? Any restrictions? • Exclusion criteria, who goes to SC, who to individual? • Do you assess or not? • Assessment tools, safety. • How do you persuade people to go? • Advertising, invites, parent leaflet • How do you reach the ‘hard to reach’? • Referral? •  How didactic? Beechpark Psychology Department June 2013

24. Future considerations • Adaptations for ASD parents • Flexibility within programme • Usefulness with this population? Beechpark Psychology Department June 2013

25. References • Keenan, M., Dillenburger, K., Doherty, A., Byrne, T. & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390-397 • Kellett, S., Clarke, S., and Mathews, L. (2007). Delivering group psychoeducational CBT in Primary Care: Comparing outcomes with individual CBT and individual psychodynamic-interpersonal psychotherapy. British Journal of Clinical Psychology, 46, 211-222.

26. White, J. (1998). ‘Stresspac’ – three year follow up of a controlled trial of a self-help package for the anxiety disorders. Behavioural and Cognitive Psychotherapy, 26, 133-141. • White, J. (1998). ‘Stress Control’ large group therapy for Generalised Anxiety Disorder: Two year follow-up. Behavioural and Cognitive Psychotherapy, 26, 237-245.

27. Contacts • Lorraine.crawley@hse.ie • Paulam.cummins@hse.ie • For more information on Stress Control: www.glasgowsteps.com

28. Thank You Beechpark Psychology Department June 2013