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

21. Beechpark Psychology Department June 2013
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. Beechpark Psychology Department June 2013
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),
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,

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,
White, J. (1998). ‘Stress Control’ large group therapy for Generalised Anxiety Disorder: Two year follow-up. Behavioural and Cognitive Psychotherapy, 26,

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

28. Beechpark Psychology Department
Thank You
Beechpark Psychology Department
June 2013