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 Background Process of ASD diagnosis Formulation and collaboration Model of support Beechpark research study Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 Background Impact of ASD on family Published literature on parental stress and well-being Lazarus & Folkman (1984) stress model Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 ASD diagnosis Cross-sectional ROI and NI study (Keenan et al, 2010) Questionnaires completed 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 January 2012

Beechpark Psychology Department January 2012 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 January 2012

Confirmation of ASD Diagnosis – Processing the diagnosis Gender (e.g. Pozo, 2010) Cultural (e.g. Daley & Sigman, 2002) Emotional response (e.g. Lutz, Patterson & Klein, 2011) Beechpark Psychology Department January 2012

Confirmation of ASD diagnosis Where next? Informing wider family and response ‘Battle fatigue’ Resources for support and intervention Beechpark Psychology Department January 2012

Formulation and collaboration 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 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 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 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 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 January 2012

Individual coping responses 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 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.) Following on from what Lorraine has just said, the challenge for us as a psychology team is how to better meet our parents expressed need for support in the management of their feelings of wellbeing within the current model of our service delivery that is also cost effective. So when looking at the autism- parent literature on family adaptation and wellbeing we decided that we needed a take a multidimensional approach to looking at this issue. Multidimensional in that when the adjustment of families with children with ASD is studied, the focus is often on negative effects, while the positive effects are ignored. From a prevention and intervention perspective, it is important to understand what the negative effects are to provide family members with a adequate strategies and techniques for reducing or counteracting them. However it is equally important to identify the positive contributions to family life of a person affected by ASD and to study family adaptation from a positive perspective. It is necessary to know what variables are implicated in positive adaptation and to understand their effects on successful adaptation to account for them in designing family interventions to improve adaptation. As we know from our clinical experience, some parents who are initially depressed with their child’s diagnosis of autism recover and cope effectively with the situation. Despite having children with severe Autism, some families have still managed successful psychological adaptation. Which leads us to ask why are some families insulated from the more adverse effects of stress and able to grow and become empowered? What coping resources do these families use that serve as protective factors for them, that increase family resilience and reduce the potential adverse effects of challenges on the family…it would be our hope that if indentified these coping resources can be used to enhance and make our intervention more appropriate. Well-being programme for parents CBT based Measurement of parent stress Includes a focus on positive parenting experiences An examination of the parent–autism literature identified a number of factors that influence adaptation: Until 1980’s, empirical research on the positive contributions of a disabled child to the family was rare. What research there is now in the main focuses on disability in general and not on children with ASD. Some studies have explored the possible influence of positive perceptions of family adaptation through their relation with variables such as stress and family well being- they have shown that positive perceptions reduce the negative impact that disability can have on a family and that these relationships can be modulated further by individual variables as gender of parent (already mentioned by Lorraine. When looking at the parent-autism literature to indentify Other types of variables are also involved, including social support, perception of problems and coping strategies. Beechpark Psychology Department January 2012

Factors influencing wellbeing and adaptation 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) Comprehensibility - the ability of the family or individual to understand life situations and give them order and structure 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 Meaning or Sense - the extent that one feels that life makes sense ASD and SOC (Pozo,2010) Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 Methodology Group Intervention CBT based model (6 sessions) focused on: problem solving cognitive restructuring monitoring thoughts and feelings Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 Methodology 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

Beechpark Psychology Department January 2012 Thank You Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 References Abidin, R. (1995). Parenting Stress Index: Professional Manual (3rd ed.). Odessa, FL: Psychological Assessment Resources Inc. 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

Beechpark Psychology Department January 2012 References 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. 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

Beechpark Psychology Department January 2012 References 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. 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

Beechpark Psychology Department January 2012 References Lazarus, R. S. and Folkman, S, (1984). Stress, Appraisal, and Coping. New York: Springer. 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/S0882596311001916 Beechpark Psychology Department January 2012

Beechpark Psychology Department January 2012 References 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. 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/InTech-psychological_adaptation_in_parents_of_children_with_autism_spectrum_disorders.pdf. Beechpark Psychology Department January 2012