Parent Empowerment Among Parents of Children Newly Diagnosed with ASD

Parents of children diagnosed with autism spectrum disorder (ASD) often report high levels of parenting stress and low levels of well-being and parenting self-efficacy (Karst & Van Hecke, a). The process of receiving an ASD diagnosis and accessing services can be particularly difficult and frustrating for parents (Moh & Magiati, 2012). Past research has demonstrated that providing parents of children with ASD information about the diagnosis through parent education programs and support groups can decrease parenting stress (Keen, Couzens, Muspratt, & Rodger, 2010; Tonge, Brereton, Kiomall, Mackinnon, King, & Rinehart, 2006). Parent empowerment, defined as the process by which parents gain access to resources, has been implicated as one factor influencing parent responses to challenges associated with parenting a child with ASD and is linked to positive outcomes including parent self-esteem and perceived control over the environment (Weiss, MacMullin, & Lunsky, 2015). Initial research has reported gains in family empowerment following participation in a support group (Banach, Iudice, Conway, & Couse, 2010). The present study examined parent empowerment in the context of an education-focused group for parents of children newly diagnosed with ASD. Of interest were the relations among parenting stress, family quality of life, and parent empowerment, as well as whether participation in the program was associated with any changes in parent empowerment.

Individuals providing data for the present study were parents who participated in a five-session parent education program offered through a university-affiliated ASD resource center. The program was designed to provide information and resources to families of children who had been diagnosed with ASD within the last year. Sessions were facilitated by a licensed clinical psychologist, and a developmental nurse practitioner also participated in sessions covering medical topics. Sessions lasted two hours and were held approximately once per month. Each session highlighted a different topic, including an introduction to ASD, medical and developmental issues often associated with ASD, choosing interventions, accessing resources, and parenting at home and in the community.

Prior to their first program session, parents were asked to complete several questionnaires, including the Family Quality of Life Scale (FQOL; Summers et al., 2005), the Parenting Stress Index – Short Form (PSI-SF, 4th ed., Abidin, 2012), and the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). Parents completed the same questionnaires after attending all five program sessions. The FES was chosen to measure parent empowerment because it has been used frequently with parents of children with disabilities and focuses on parents’ perceived abilities to manage demands likely to be associated with parenting a child with ASD. The FES is divided into three subscales, measuring empowerment related to family life, child services, and community involvement. For instance, the ‘Family’ subscale includes items such as “I believe I can solve problems with my child when they happen.” The ‘Child Services’ subscale includes items such as “I am able to work with agencies and professionals to decide what services my child needs.” Finally, the ‘Community Involvement’ subscale includes items such as “I know what the rights of parents and children are under special education laws” and “I know how to get agency administrators or legislators to listen to me.”

Data from 69 parents (42 mothers, 27 fathers) who participated in the program between July 2014 and April 2016 were included in the present study. All parents had a child with ASD between the ages of 18 months and 9 years who had been diagnosed with ASD within approximately the last year. Analyses first examined how parent empowerment was related to parenting stress and family quality of life. Correlations indicated that parenting stress was negatively associated with parent empowerment related to the family (r = -.70, p < .01), parent empowerment related to child services (r = -.32, p < .01), and parent empowerment related to community involvement (r = -.35, p < .01). This suggests that parents who report higher levels of empowerment report lower levels of parenting stress. A multiple regression demonstrated that empowerment related to the family was most closely associated with parenting stress (β = -.69, p < .01). After accounting for empowerment related to family life, neither empowerment related to child services nor community involvement accounted for any additional variance in parenting stress. Next, correlations demonstrated that family quality of life was positively associated with parent empowerment related to the family (r = .72, p < .01), child services (r = .41, p < .01), and community involvement (r = .46, p < .01). As with parenting stress, empowerment related to the family was most closely associated with family quality of life in a multiple regression analysis (β = .71, p < .01). Once again, empowerment related to child services and community involvement did not explain additional variance beyond that explained by family-related empowerment. This suggests that parent empowerment related to family life is most closely associated with both parenting stress and family quality of life. Parents who reported higher family-related empowerment also reported lower levels of parenting stress and higher overall quality of life.

Next, analyses examined whether parents reported higher levels of empowerment following participation in the parent education program. Paired samples t-tests indicated that parents reported higher levels of empowerment on all three subscales following the program compared to prior to their participation, indicating that empowerment related to family life, child services, and community involvement all increased (See Figure 1). Due to the absence of a control group in the present study, this increase in empowerment cannot be directly attributed to parents’ participation in the program. However, future research may be directed at answering this question.

The present study documented relations among parenting stress, family quality of life, and parent empowerment. In particular, higher parent empowerment is associated with lower levels of parenting stress and higher family quality of life. Parent empowerment specifically related to family life was most closely associated with parenting stress and family quality of life, emphasizing the importance of parents’ perceptions of their own abilities to manage the day-to-day challenges often associated with parenting a child with ASD. Further, the present study provided preliminary evidence that parent empowerment increased over the course of an education program focused on providing information about ASD, interventions, and services.

The results of the present study must be considered preliminary, as no control group was included in the design. As a result, it is not possible to conclude that parent empowerment increased as a direct result of the parent education program. In addition, because parenting stress, family quality of life, and parent empowerment were all measured at the same time, it is not possible to conclude that one causes the others. However, the present study does suggest that parent empowerment may be a useful target of intervention. It is possible that enhancing parents’ empowerment – that is, their perceptions of their own abilities to manage the demands of parenting, accessing services for their child, and advocating within the community – may have a positive impact on their quality of life and levels of stress. Future research more closely examining these questions is an important step in improving the lives of children with ASD and their families, particularly in the often overwhelming time following an ASD diagnosis.

 

Laura L. Corona, MA, and Stephanie A. Fox, MA, are Graduate Assistants, Center for Autism and Related Disabilities, Melissa L. Rinaldi, PhD, is a Clinical Investigator, and Kristin V. Christodulu, PhD, is Director of the Center for Autism and Related Disabilities (http://www.albany.edu/autism/). For more information about this research, contact Laura Corona at lcorona@albany.edu.

References

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Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review15:3 247-277.

Keen, D., Couzens, D., Muspratt, S., & Rodger, S. (2010). The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorders4:2, 229-241.

Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology37:4, 305.

Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders6:1, 293-303.

Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., & Wang, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research49:10, 777-783.

Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 45:5, 561-569.

Weiss, J. A., MacMullin, J. A., & Lunsky, Y. (2015). Empowerment and parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies24:7, 2038-2045.

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