Research Project: Respite Care Availability for Military ASD Families and Impact on Caregiver

Stress, Anxiety, & Depression

Rebecca Christi, MD, FAAP

Lt Col, USAF, MC

LEND Discipline: Developmental Behavioral Pediatrics

Fellow (FEL-2), Developmental Behavioral Pediatrics, Madigan Army Medical Center

LEND Faculty Mentor:

Dr. Eric Flake, MD, FAAP

Col, USAF, MC

Staff Developmental Behavioral Pediatrician, Madigan Army Medical Center enter

Disclaimer: The opinions and assertions expressed herein are those of the author and presenter and do not necessarily reflect the official policy or position of the Department of Defense or the Unites States Government.

Background

• Definition of respite care for families raising a child with autism spectrum disorder (ASD)

• Increased stress in caregivers and benefits of respite care in families with ASD well documented

• Respite care provision to military families with ASD child- service specific

• Exceptional Family Member Program (EFMP) & the Extended Care Health Option (ECHO) Core Autism Spectrum Disorder Symptoms with common symptoms & other

conditions

Impaired social communication/interaction:

-social reciprocity

-nonverbal communication

-relationship difficulties

-Severe constipation-Seizure disorder-Genetic disorders -Language

impairment -ID/cognitive difficulties

Restrictive & Repetitive Behaviors-repetitive speech & behaviors-insistence on sameness-repetitive interests -sensory differences

-hyperactivity-impulsivity-agitation/aggression-anxiety

Medical Comorbidities

Adaptive concerns

Behavioral symptoms

Background (continued)

• No known respite studies specifically looking at military families

• Military families face unique challenges which further increases risks

• Lack of standardization of EFMP respite resources for ASD families & lack of utility of ECHO respite

• Decreasing parental stress → critical in military readiness

Methodology• Generating the Research Question

• Anonymous cross sectional questionnaire-based survey study design - implied consent by voluntary participation

• Objectives of study focused too on demographics/makeup of families*

Pop

ula

tio

n In parents/caregivers of children with an autism spectrum disorder

Inte

rven

tio

n Does the utilization of respite care resources

Co

mp

aris

on Compared to a

lack of access (or utilization) of respite care resources

*(factoring in contributing and confounding factors)

Ou

tco

me Help decrease

level of caregiver perceived stress and reported anxiety and depression symptoms

Perceived Stress Scale-10 (PSS-10) & Patient Health Questionnaire-4 (PHQ-4)

• Validity of the PSS in general population • Strengths of the PSS-10 over other versions

(PSS-14, PSS-4)• Validity and strength of the PHQ-4 as a screen• Ethical considerations in choosing a screen for anxiety/depression

Methodology (continued)

• Inclusion Criteria: Military Parent (active duty sponsor or civilian dependent) with a child (one or more) with diagnosis of autistic spectrum disorder

• Exclusion Criteria: Not enrolling families with retired military parent only

• Asked to complete a Parent/Caregiver Survey & two brief self-report stress and health surveys

• Key goals:

Demographic Survey:

Decrease Response Bias

Wide Range of Inclusion:

Decrease unintentional Selection Bias

Methodology (continued)

• Estimated 600 pediatric patients with diagnosis of autism enrolled to EFMP and serviced by Madigan Army Medical Center, Tacoma Washington and its surrounding clinics

• Goal of between 20-30% in-person survey response rate = calculated sample size of 235 responses

• utilization EFMP base community System Navigators to improve recruitment

• Rolling collection ongoing through summer 2020 - impact of COVID-19

• Current progress to date

Methodology/Current Results

• Data collection still ongoing for this study-through summer 2020

• Currently at almost a 100 surveys returned

• Quick breakdown of (some) demographics thus far:

55% Army families, 40% Air Force, 5% Navy

65% active duty/civilian spouse households

72% of the families have children with level 2/3 autism

35% of the families have respite care resources in place

67% of the parents/caregiver with other military stressors in last 2 years

Conclusions

Conclusions/Next Steps

• Ultimate goal→ being able to advocate for change in current policies outlining respite care for military families

• Analysis of data collected→ influence design of next study

• Starting the dialogue is the main priority

References

• 1. Hayes, S. A., & Watson, S. L. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders. 2013. 43, 629-642.

• 2. Benjak T, Vuletić Mavrinac G, Pavić Simetin I. Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of non-disabled children in Croatia. Croat Med J. 2009; 50(4):403–409.

• 3. Bitsika, V., & Sharpley, C. Stress, Anxiety and Depression Among Parents of Children With Autism Spectrum Disorder. Journal of Psychologists and Counselors in School. 2004.14(2): 151-161.

• 4. Kuusikko-Gauffin S, Pollock-Wurman R, Mattila ML, Jussila K, Eberling, H, Pauls D, Moilanen I. Social Anxiety in Parents of High-Functioning Children with Autism and Asperger Syndrome. Journal of Autism and Developmental Disorders. 2013. 43(3): 521-529.

• 5. Micali N, Chakrabarti S, Fombonne E. The Broad Autism Phenotype: Findings from an Epidemiological Survey. Autism. 2004. 8(1): 21-37.

• 6. Singer, George H.S. Meta-Analysis of Comparative Studies of Depression in Mothers of Children With and Without Developmental Disabilities. American Journal on Mental Retardation. 2006. 111(3): 155-169.

• 7. Falk, N.H., Norris, K. & Quinn, M.G. The Factors Predicting Stress, Anxiety and Depression in the Parents of Children with Autism. Journal of Autism and Developmental Disorders. 2014. 44(12): 3185-3203.

• 8. Van Steijn, D.J., et al. The Reciprocal Relationship of ASD, ADHD, Depressive Symptoms and Stress in Parents of Children with ASD and/or ADHD. Journal of Autism and Developmental Disorders. 2014. 44(5): 1064-1076.

• 9. Ekas, N., & Whitman, T. L. (2010). Autism symptom topography and maternal socioemotional functioning. American Journal on Intellectual and Developmental Disabilities, 115(3), 234–249.

• 10. Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. Moderators of stress in parents of children with autism. Community Mental Health Journal. 2001. 37(1): 39-52.

• 11. Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism. 2007. 11(6): 489–501.

References (con’t)

• 12. Whitmore, K.E. & Snethen, J. Respite care services for children with special healthcare needs: Parental perceptions. Journals for Specialists in Pediatric Nursing. 2018. 23(3): e12217.

• 13. Krakovich, T.M., McGrew, J.H., Yue, Y, Ruble, L.A. Stress in Parents of Children with Autism Spectrum Disorder: An Exploration of Demands and Resources. Journal of Autism and Developmental Disorders. 2016. 46(6): 2042-2053.

• 14. Harper, A, Dyches, T.T, Harper, J, Roper, S.O., South, M. Respite Care, Marital Quality, and Stress in Parents of Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 2013. 43(11): 2604-2616.

• 15. Davis, J.M., Finke, E., Hickerson, B. Service delivery experiences and intervention needs of military families with children with ASD. Journal of Autism andDevelopmental Disorders. 2016. 46(5): 1748-1761.

• 16. Lester P, Flake E. How Wartime Military Service Affects Children and Families. Future Child. 2013. 23(2): 121-41.

• 17. Davis, J.M. & Finke, E.H. The Experience of Military Families with Children with Autism Spectrum Disorders During Relocation and Separation. Journal of Autism and Developmental Disorders. 2015. 45(7): 2019-2034.

• 18. McAuliffe, T, Cordier, R, Vaz, S, Thomas, Y, and Falkmer, T. Quality of Life, Coping Styles, Stress Levels, and Time Use in Mothers of Children with Autism Spectrum Disorders: Comparing Single Versus Coupled Households. Journal of Autism and Developmental Disorders. 2017. 47(10): 3189-3203.

• 19. Dyches, T.T., Christensen, J.M.H., Mandleco, B, and Olsen, S. Respite care for single mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders. 2016. 46(3): 812-824.

• 20. Military-Connected Children with Special Health Care Needs and Their Families: Conference Summary and Recommendations. NIH Main Campus. Bethesda, MD. April 2014. Available at: https://www.nichd.nih.gov/sites/default/files/about/meetings/2014/Documents/military_families_summary.pdf. Accessed July 31, 2019.

• 21. United States Government Accountability Office. Department of Defense Should Improve Its Oversight of the Exceptional Family Member Program. Available at: https://www.gao.gov/assets/700/691647.pdf. Last updated May 2018. Accessed 14 July 2019.

• 22. US Army Medical Department. EFMP Overview. Available at: http://efmp.amedd.army.mil/. Last updated 9 September 2015. Accessed 14 July 2019.

Acknowledgements & Questions• Thank you to:

• Dr. Eric Flake

• Dr. Dan Roy

• DBP support and ancillary staff at Madigan- especially Megan O’Day

• UW LEND Faculty and Leadership

• Questions?