Parent well-being and ASD

Beechpark Psychology Department June 2013

Parent well-being and ASD

Psychology Department

Beechpark Services

June 2013

Presented by:

Dr. Paula Cummins, Clinical Psychologist

Dr. Lorraine Crawley, Clinical Psychologist


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


Background

Impact of ASD on family

Published literature on parental stress and well-being

Commonly referenced stress models

Expectations of parenting

Birth order of child Early developmental history Hope and dreams for future Attachment and bonding with child



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)


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


Confirmation of ASD Diagnosis – Processing the diagnosis

Gender

Cultural issues

Emotional responses


Confirmation of ASD diagnosis

Where next?

Informing wider family and response

‘Battle fatigue’

Resources for support and intervention

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



Formulation and collaboration

Experience of diagnostic process Expectations of parent role Previous life history Developmental stages Living with Autism


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?’

Parent groups and programmes

Service groups (e.g. Early Bird)

Other agencies (e.g. Incredible Years)

Parent Community Groups

Online groups



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


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?

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


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 Autism Services Research

Examining stress control intervention for parents with children with autism

(Crawley, L., Cummins, P., Condon, L., Fitzpatrick, C., & O’Reilly, A.)


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)


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

Findings to date

Demographic – Mothers– Mild to moderate levels of stress– Attendance remained stable


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


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


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?


Future considerations

Adaptations for ASD parents Flexibility within programme Usefulness with this population?


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

[email protected] [email protected]

For more information on Stress Control:

www.glasgowsteps.com


Thank You

Documents

Parent well-being and ASD