ASD, ABA and Impact on Caregiver Burden. Erin Nolan & Fletcher Wood

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1 ASD, ABA and Impact on Caregiver Burden Erin Nolan & Fletcher Wood

2 Family Match ALEX, 6 Max, 6

3 Background Family Match Growing numbers of children identified with autism (suggested 1 in 50 by CDC). ABA prevalent form of intervention. (Multiple Forms; Discrete Trial Training, Pivotal Response Training, Picture Exchange Communication System, etc.). Caregiver burden is often not considered.

4 Key Search Terms Applied Behavioral Analysis Is a form of operant conditioning established to supply individuals with ASD practice with concepts of appropriate behaviors. Autism Spectrum Disorder A Pervasive Development Disorder denoted by impairments in social, communication, and restricted, repetitive, and stereotyped behaviors. Caregiver Burden Is referred to as the stress or strain that is experienced among caregivers based on severity or difficulties due to care recipient status. Objective Tangible ramifications (economic loss, leisure time, etc.) Subjective Emotional ramifications (worry, fatigue, etc.) Discrete Trial Training is a prevalent form of ABA utilized with children with autism and has been found useful in assisting with skills such as motor, vocal, and verbal imitation, receptive and expressive language, play skills, self management of maladaptive behaviors. Intensity Hours participated in intervention.

5 Project Description Does intensity of ABA intervention impact levels of caregiver stress? Does level of caregiver stress impact recipient of ABA intervention?

6 Methods IRB Did not require IRB approval. Search Engine Academic Search Premiere Number Reviewed 22 articles Selected 8 Eligibility Criteria Key search terms. Focused on caregivers and children with ASD. What is stress with/without intervention. Early intervention programs, but mainly ABA.

7 Methods Continued Instruments and Assessments Questionnaire on Resources and Stress (QRS F) Center for Epidemiological Studies Depression Scale (CES D) Autism Behavior Checklist (ABC) looking at ASD Behavior Presentation Gilliam Autism Rating Scale (GARS) Family Needs Survey (FNS) looking at unmet family needs when raising a child with a disability Health Related Quality Of Life (HRQOL) looking at mental health outcomes for parents

8 Procedure Gained approval of topic from LEND and NMSU. Searched for, and evaluated, articles. Included or excluded the articles based on criteria. Looked at the concept of ASD and parental level of baseline stress. Whether evidence pointed to ABA alleviating or exacerbating burden. Looked at how burden/stress/strain is impacted by parents participation in, or not in, ABA in home therapy.

9 Results At baseline, parents of children with ASD experience the highest levels of stress over other developmental disabilities. Level of caregiver burden can reduce ABA efficacy. ABA efficacy improves ASD symptomatology. Symptomatology effects caregiver burden (Cycle). Intensity of child involvement did not impact ASD presentation. *

10 Results Continued If early intervention was utilized, stress was reduced. The older the children were, the less stressed parents felt. * If child had been engaged longer, depressive symptoms were lower for parents. * Adaptive coping, informal social supports, and beliefs about the efficacy of ABA and DTT decreased stressed. However higher symptomatology impacted pessimism of outcome of DTT.

11 Implications Difficulty defining our vocabulary, not consistent across articles. Contradictory evidence with coping and how that impacts burden. Difficulty finding burden outcome for families on the spectrum. Contradictory information about parental involvement. Very enmeshed subject with caregiver stress and strain. Expression or presentation of behaviors can be very different and is subjective.

12 Summary/Future Directions Caregiver Support Improving Family Structure parenting, spouse impact Parenting stress education Counseling Mental health evaluations (Follow up, post diagnosis, increased wrap around services) Media on supporting client but not parent

13 Roles in Project Search for and evaluate research articles using inclusion and exclusion criteria. Breakdown of articles. Piece together significant relationships. Begin to look for early parent interventions.

14 What I Learned That parental mental health plays a large role in treatment efficacy. The systems perspective is key for creating the ideal environment and desired outcomes. EVERY FAMILY IS DIFFERENT! To be assertive with colleagues when working in a group. Conducting a professional literature review is difficult. Research is not for me!

15 References number of children withautism higher than previously thought/ American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Grindle, C. F., Kovshoff, H., Hastings, R. P., & Remington, B. (2009). Parents Experiences of Home Based Applied Behavior Analysis Programs for Young Children with Autism. Journal Of Autism & Developmental Disorders, 39(1), Hastings, R. P., & Johnson, E. (2001). Stress in UK Families Conducting Intensive Home Based Behavioral Intervention for Their Young Child with Autism. Journal Of Autism & Developmental Disorders, 31(3), Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F., Brown, T., & Remington, B. (2005). Systems Analysis of Stress and Positive Perceptions in Mothers and Fathers of Pre School Children with Autism. Journal Of Autism & Developmental Disorders, 35(5), Khanna, R., Madhavan, S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker Cottrill, B. (2011). Assessment of Health Related Quality of Life Among Primary Caregivers of Children with Autism Spectrum Disorders. Journal Of Autism & Developmental Disorders, 41(9),

16 References Continued Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting Stress Reduces the Effectiveness of Early Teaching Interventions for Autistic Spectrum Disorders. Journal Of Autism & Developmental Disorders, 38(6), Schoen, A. (2003). What Potential Does the Applied Behavior Analysis Approach Have for the Treatment of Children and Youth with Autism?. Journal Of Instructional Psychology, 30(2), 125. Schwichtenberg, A. A., & Poehlmann, J. J. (2007). Applied behaviour analysis: does intervention intensity relate to family stressors and maternal well being?. Journal Of Intellectual Disability Research, 51(8), Schoen, A. (2003). What Potential Does the Applied Behavior Analysis Approach Have for the Treatment of Children and Youth with Autism?. Journal Of Instructional Psychology, 30(2), 125.

17 Questions?

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