Parent well-being and ASD
Psychology Department
Beechpark Services
January 2012
Presented by:
Louise Condon, Educational Psychologist
Dr. Lorraine Crawley, Clinical Psychologist
Beechpark Psychology
Department January 2012
Overview of parent well-being
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Background
Process of ASD diagnosis
Formulation and collaboration
Model of support
Beechpark research study
Beechpark Psychology
Department January 2012
Background
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Impact of ASD on family
Published literature on parental stress and
well-being
Lazarus & Folkman (1984) stress model
Beechpark Psychology
Department January 2012
ASD diagnosis
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Cross-sectional ROI and NI study (Keenan et al,
2010)
Questionnaires completed parents and multidisciplinary 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 January 2012
ASD diagnosis
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99% of parents and professionals agreed
increased support and guidance during
process should be in place for families
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Reports of problematic parent and
professional partnerships
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Parent stress: Diagnostic and planning
processes
Beechpark Psychology
Department January 2012
Confirmation of ASD Diagnosis –
Processing the diagnosis
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Gender (e.g. Pozo, 2010)
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Cultural (e.g. Daley & Sigman, 2002)
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Emotional response (e.g. Lutz, Patterson &
Klein, 2011)
Beechpark Psychology
Department January 2012
Confirmation of ASD diagnosis
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Where next?
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Informing wider family and response
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‘Battle fatigue’
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Resources for support and intervention
Beechpark Psychology
Department January 2012
Formulation and collaboration
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Experience of diagnostic process
Expectations of parent role
Previous life history
Key issues at developmental stages
Living with Autism
Beechpark Psychology
Department January 2012
Formulation and collaboration
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Building a therapeutic alliance
Assessing level of stress and well-being
Motivational interviewing
Consultation with clinical team
Beechpark Psychology
Department January 2012
Assessment of parent stress
and well-being
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General screening measures e.g. Parenting
Stress Index (Abidin, 1995)
Significant life events
Care plan process – strengths and needs
based
Interweaved questions on the theme ‘How is
the family?’
Beechpark Psychology
Department January 2012
Parent groups and programmes
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Service groups (e.g. Parents Plus)
Other agencies (e.g. Incredible Years)
Parent community groups
Online groups
Beechpark Psychology
Department January 2012
Model of service delivery to parents
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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)
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Area identified for development: Parent well-being
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Beechpark Psychology
Department January 2012
Individual coping responses
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The stress response and ASD
Increasing positive mood, e.g. seeking support,
positive reframing (Pottie & Ingram, 2008)
Feeling in control over stressors one of the biggest
factors influencing the effect of stress on health
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 January 2012
Beechpark research
Examining a well-being intervention for parents
with children who have autism.
(Condon, L., Crawley, L., Cummins, P.,
Fitzpatrick, C., & O’Reilly, A.)
Beechpark Psychology
Department January 2012
Factors influencing wellbeing and
adaptation
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Characteristics of the child with ASD (e.g.
Bravo, 2006)
Social support (e.g. Boyd,2002)
Coping strategies (e.g. Hastings et al.,2005)
Perception of problems (e.g. Pozo,2010)
Beechpark Psychology
Department January 2012
Sense of Coherence (SOC)
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Comprehensibility - the ability of the family or individual to
understand life situations and give them order and structure
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Manageability - the ability to handle or respond to situational
demands or the feeling that one is capable of obtaining the
necessary resources to do so
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Meaning or Sense - the extent that one feels that life makes
sense
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ASD and SOC (Pozo,2010)
Beechpark Psychology
Department January 2012
Methodology
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Group Intervention
CBT based model (6 sessions) focused on:
problem solving
cognitive restructuring
monitoring thoughts and feelings
Beechpark Psychology
Department January 2012
Methodology
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Participants
Convenience sample
Instruments
Demographics and family characteristics Q.
The Parenting Stress Index–Short-Form (PSI-SF)
The Positive Contributions Survey (PCS)
Depression Anxiety Stress Scales (DASS)
Beechpark Psychology
Department January 2012
Thank You
Beechpark Psychology
Department January 2012
References
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Abidin, R. (1995). Parenting Stress Index:
Professional Manual (3rd ed.). Odessa, FL:
Psychological Assessment Resources Inc.
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Boyd, B.A.(2002).Examining the relationship
between stress and lack of social support in mothers
of children with autism. Focus on Autism and Other
Developmental Disabilities,17(4),208-215.
Beechpark Psychology
Department January 2012
References
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Bravo,K.(2006). Severity of autism and parental
stress: The mediating role of family environment.
Dissertation Abstracts International Section A: The
Humanities and Social Sciences, 66(10),3.821.
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Daley, T. & Sigman, M. (2002). Diagnostic
conceptualisation of autism among Indian
psychiatrists, psychologists and paediatricians.
Journal of Autism and Developmental Disorders,
32(1), 13-23.
Beechpark Psychology
Department January 2012
References
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Hastings,R.P.,Kovshoff,H.,Brown,T.,Ward,N.J,
degli Espinosa,F.,& Remingtin,B. (2005). Coping
strategies in mothers and fathers of preschool and
school age children with autism. Autism,9,377-391.
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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, 390-397
Beechpark Psychology
Department January 2012
References
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Lazarus, R. S. and Folkman, S, (1984). Stress,
Appraisal, and Coping. New York: Springer.
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Lutz, H., Patterson, B. & Klein, J. (2011). Coping
with autism: A journey towards adaptation. Journal
of Paediatric Nursing, Accessed online at
http://www.sciencedirect.com/science/article/pii/S088
2596311001916
Beechpark Psychology
Department January 2012
References
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Pottie, C. & Ingram, K. (2008). Daily stress, coping
and well-being in parents of children with autism: A
multilevel modeling approach. Journal of Family
Psychology, 22(6), 855-864.
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Pozo, P. (2010). In Pozo, P., Sarria, E. & Brioso, A.
(2011). Psychological Adaptation in Parents of
Children with Autism Spectrum Disorders. Accessed
online at:
www.intechopen.com/source/pdfs/20034/InTechpsychological_adaptation_in_parents_of_children_wi
th_autism_spectrum_disorders.pdf. Beechpark Psychology
Department January 2012