FORMAL SERVICES THAT
DECREASE STRESS IN
PARENTS RAISING
CHILDREN WITH AUTISM
Dr. Lori J. Goss-Reaves
Indiana Wesleyan University
Why research services and autism?
• Number continues to rise
• Parents report a greater number of stressors
• Rely on a variety of formal and informal supports
• Do not always reduce parental stress
• Indiana Medicaid Waiver programs
Literature: Overview
• Greater number of stressors
• Reported to impact the entire family system
• Social support
• Less depressive symptoms and somatic problems
• From teachers
• A belief in the effectiveness of educational/therapeutic
intervention
Literature: Formal Social Support
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•
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Behavioral intervention programs
Parent education programs and support groups
Public school services
Respite care
Early intervention services
Psychotherapy
Literature: Areas of Research
Longitudinal studies
needed to provide
base line data
Description of
services
available in
context of
psycho-social
needs
Autism
programs
and
services
Psychoeducational
documentation &
evaluation of
programs and
services
Exploration of
caretaker/
therapist burnout
McGrath (2006)
Design: Overview
• Participatory Action Research Approach
• Qualitative methods for data collection
• Data were collected through
• Semi-structured interview
• primary stakeholder
• secondary stakeholder
• Three focus groups with primary and secondary stakeholders
combined
Participants: Overview
• Eleven primary stakeholders (25-52)
• 10 male children and 1 female
• 3- 0S, 3- 2S, 4- 1S, 1-4S
• 2 fathers and 9 mothers
• 4 M, 4 S, 2 D, 1 UM
• All H.S. diplomas
•
•
•
•
3 bachelors degrees
2 associate’s degree
one a certificate
one a master’s degree
• Three secondary stakeholders
• All professionals who worked in the field of autism
Community: Formal Services
• First Steps
• Speech Therapy
• Occupational
Therapy
• Physical Therapy
• Public School IEP
services
• preschool
• ABA
• Family Counseling
• Career counseling
• Medicaid Waiver
Services
• Respite care
• Special Ed. Co-Op
Activities
Results: Overview
• Parents in the ABC Community are relying on formal supports
to help their child with autism
• These services do not always reduce parental stress
• 91% of primary stakeholders reported that their child was
receiving formal services
Results: Decreased Parental Stress
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•
•
•
•
Impact on the family system
In the home or community
Provided support to parents and relief from daily care
Impact on the child’s development
Provider advocated for the child and understood the needs of
the parent
Results: Service Needs
Prioritized
• Emotional Support for the Parents
• A hub or centralized location to learn about resources and
activities
• A break from the daily care
• More options in therapy
• Support Group
Conclusion: Action Plan
• Help at time of diagnosis
• First aid kit
• A hub
• Service providers better understanding parent’s needs
• Community presentations
• Respite Care
• Addition to support group
Discussion: Overview
• Practice was improved
• Secondary stakeholders
• Community presentations
• Change occurred in community
• Community calendar
• Stakeholders empowered
• First Aid Kit
Questions
lori.reaves@indwes.edu
References
Alitere & Kluge, 2009; Bishop, Richler, Cain, & Lord, 2007;
Cassano, Adrian, Veirs, & Zeman, 2006; Center for Disease
Control, 2012; Cullen & Barlow, 2002; Edwards, 2008 ; Ekas,
Whitman, & Shivers, 2008; Hastings & Johnson, 2001; Higgins,
Bailey, & Pearce, 2005; Knafl & Santacroce, 2004; Koegel,
Koegel, & Carter, 1999; Ladd, 2005; Law, Plunkett, Taylor, &
Gunning ,2008; LeCouer, 2007; Patton, 2002; Piven, Chase,
Landa & Wzorek, 1991; Rodrigue, Morgan, & Geffken, 1992;
Sivberg, 2002; Stringer, 1999; Stringer & Dwyer, 2009 ;
Tarakeshwar & Pargament, 2001; Zeman, Swanke, & Doktor,
2011