Caregiver Stress in Families of Children with ASD Amy Keefer, PhD, - - PowerPoint PPT Presentation

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Caregiver Stress in Families of Children with ASD

Amy Keefer, PhD, ABPP Clinical Psychologist Center for Autism and Related Disorders Assistant Professor, Johns Hopkins School of Medicine January 23, 2019

No Disclosures

Conflict of Interest/Disclosures must be your second slide

Learning Objectives

• Recognize the impact of stress in caregivers of children

with ASD.

• Discuss the causes of stress for many caregivers of children

with ASD.

• Identify coping strategies for stress that can be helpful for

caregivers of children with ASD.

What is Caregiver Stress?

Caregiver stress: A psychological reaction to the demands of being a parent (Deater-Deckard, 1998)

Family Adjustment and Adaptation Response Model

McCubbin & Patterson, 1983

Rates of Stress

• 80% of caregivers of kids with ASD report being

“stretched beyond their limits”

• Stress often persists across the caregiver’s lifetime
• Parents of children with ASD have higher rates of

stress, anxiety, and depression than parents of typically developing children and children with other developmental disabilities

Bitsika et al., 2013 Hayes & Watson, 2013 Bromley et a., 2004

Why Is Caregiver Stress a Problem?

• Negatively Affects Caregiver Health and Well-

Being

• Interferes with Effective Parenting
• Limits Attention to Other Relationships
• Limits Ability to Provide for Child’s Special

Needs

• Counteracts the Effects of Child Interventions

Bitsika et al., 2013 Ludlow et al., 2011 Osbourne et al., 2007

Increased Demands

Caregiving demands vary across development

Increased Demands

• ASD Symptom Severity and Maladaptive

Behaviors Correlate with Parental Stress

• Disrupted Sleep and Feeding Patterns

Associated with Parental Fatigue and Stress

Ingersoll & Hambrik, 2011 Lecavalier et al. 2006 Bonis, 2016

Limited Resources and Diminished Coping

• Limited Access to Skilled Treatment Team
• Limited Educational Support/Services
• Reduced Social Support from Family and

Friends

• Reduced Finances

Bonis, 2016 Altiere & von Kluge, 2009

Negative Meanings

Some Caregivers Experience:

• Change in Identity
• Self-Blame
• Feelings of “Failure”
• Decision Making Doubt
• Hopelessness

Bonis, 2016

Family Adjustment and Adaptation Response Model

McCubbin & Patterson, 1983

Caregiver Stress: Creating Balance

McCubbin & Patterson, 1983

Family Adjustment Create New Meanings Reduce Demands Maximize Coping and Resources

Reducing Demands

• Assemble and Utilize Treatment Team
• Obtain Caregiver Training in Symptom

Management Strategies

• Prioritize Treatment for Sleep and Feeding

Problems if They Contribute to Stress

Whittingham et al., 2009

Maximizing Coping and Resources

• Self Care and Respite!
• Seek Personal Mental Health Treatment (when

needed)

• Seek Social Support
• Prioritize Relationship with Spouse/Co-

Caregiver

Harper et al., 2013 Dykens et al., 2014; 2015 Altiere & von Kluge, 2009

Creating Positive Meanings

• Work toward Acceptance
• Strive to See the Potential for Child and

Family

• Look for Hidden Joys and

Rewards

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Summary

• Caregivers of individuals with ASD experience high rates
• f stress, anxiety, and depression due to intensive

demands and limited coping resources.

• Caregivers of individuals with ASD can manage stress by

reducing demands, maximizing coping resources, and creating new meanings from their experiences.

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Resources

• Autism Speaks – https://www.autismspeaks.org/
• Autism Society of America - http://www.autism-

society.org/

• Autism Treatment Network - http://asatn.org/
• IAN - https://iancommunity.org/
• My Autism Team -

https://www.myautismteam.com/resources/autism

• an-overview
• The Arc - https://www.thearc.org/

Thank you for your attention