The Effect of An Integrative Parent Education Program On Quality of Life for Families of Children with An Autism Spectrum Disorder

Background: Families with children with Autistic Disorder (AD) exhibit decreases in cohesion and adaptability, increased social isolation (Higgins et al., 2005), higher levels of marital dissatisfaction (Hastings et al., 2005), and overall disruption to daily life (Bristol et al., 1988). Higher levels of stress, depression, and anxiety (Moes et al., 1992), and lower levels of parenting ability (Bristol et al., 1988) have been evidenced in mothers and fathers of children with AD. Siblings of AD children exhibit higher levels of psychological distress (Seligman & Darling, 2007), and maladjustment (Wolf, et al. 1998). Moreover, the sparse research on Quality of Life (QoL) specific to AD has suggested QoL is also compromised (Lindholm, 2007). Research with families of children with AD has demonstrated the positive outcome of parent training (Ingersoll & Dvortcsak, 2006; Koegel et al., 1996). Specifically, these studies examined the effect of training parents to become treatment providers for their children. Few studies have taken parent training a step beyond assisting parents in providing treatment, making the curriculum more integrative. What is known is that the discussion of additional support components may increase parent’s maintenance of skills in implementing intervention techniques (Stahmer & Gist, 2001).

Objectives: This aim of this study was to examine the effect of an Integrative Parent Education Program (IPEP) on knowledge gain, comfort in managing challenging behaviors, and QoL in caregivers of children diagnosed with an Autism Spectrum Disorder (ASD), utilizing a between-group, repeated-measure research design.

Methods: Participants to date are 43 primary caregivers of children diagnosed with an ASD. All participants received a standard score above 70 on the Gilliam Autism Rating Scale-Second Edition and also had previously received a formal diagnosis by a licensed psychologist.  Caregivers all endorsed behaviors that were challenging to manage.  Referrals were made by a state agency for behavior intervention and parent training. Participants were assigned to either the IPEP (n=23) or Treatment as Usual (TU) condition (n=20). Caregivers in the treatment condition attended a total of four IPEP modules.  Course topics included general information on ASD diagnoses, typical child development, efficacious treatments, principles of ABA, behavior management, facilitation of social and communication skills, family stress, etc. Pre- and post-measures included multiple choice exams for each IPEP module, a Likert scale rating of comfort in managing behavior problems in their child, the Caregiver Evaluation of Quality of Life (CEQOL), and the Pediatric Quality of Life Inventory (PedsQL).

Results: Preliminary findings show that a small sample of caregivers who completed the IPEP program showed improved scores of parent knowledge (p=.011) and greater comfort with behavior management (p=.028) from pre- to post-test.  Caregiver ratings of quality of life (QoL) appeared to remain more constant. However, pre-post test correlations for the QoL measures used appeared adequate.

Conclusions: The implementation of an Integrative Parent Education Program is effective in increasing caregiver’s knowledge and comfort in managing challenging behaviors.  However, changes in perceived QoL may remain constant.  It is possible such improvement in QoL lags behind the increases in caregiver knowledge and comfort in managing behaviors.