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

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

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

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

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 (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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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

Beechpark Psychology Department Thank You Beechpark Psychology Department June 2013