Research PaperParental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder
Introduction
Children with autism spectrum disorder (ASD) are characterized by their social interactions and communication challenges and restricted, repetitive behaviors (American Psychiatric Association, 2013). Because of these unique characteristics, caregiving of children with ASD may be stressful for parents, and further, negatively influence the entire family (Boehm, Carter, & Taylor, 2015; Fein & Dunn, 2007; Hutton & Caron, 2005; McStay, Trembath, & Dissanayake, 2014a; Meadan, Halle, & Ebata, 2010; Montes & Halterman, 2008;Rao & Beidel,2009). Compared to parents of typically developing children and children with other disabilities, parents of children with ASD report higher stress levels and lesser well-being (e.g., Abbeduto et al., 2004; Brobst, Clopton, & Hendrick, 2009; Dabrowska & Pisula, 2010; Eisenhower, Baker, & Blacher, 2005; Hayes & Watson, 2013; Hoffman, Sweeney, Hodge, Lopez-Wagner, & Looney, 2009; Johnson, Frenn, Feetham, & Simpson, 2011; Phetrasuwan & Miles, 2009; Quintero & McIntyre, 2010; Robbins, Dunlap, & Plienis, 1991; Schieve, Blumberg, Rice, Visser, & Boyle, 2007). Thus, reducing parental stress and improving family quality of life (FQOL) are continuing concerns for these families (Mancil, Boyd, & Bedesem, 2009; McStay et al., 2014a; Meadan et al., 2010).
To help parents reduce their stress and improve their FQOL, factors (e.g., child behavior, parent coping style, family support) related to parental stress and FQOL have been identified in the literature (e.g., Boehm et al., 2015, Davis and Carter, 2008; Ekas, Lickenbrock, & Whitman, 2010; Gardiner & Iarocci, 2015; Hall & Graff,2011; Lyons, Leon, Phelps, & Dunleavy, 2010; McStay et al., 2014a). Family-professional partnerships have been identified as a positive factor to help parents reduce their stress and improve their FQOL (e.g., Burke & Hodapp, 2014; Davis & Gavidia-Payne,2009; Eskow, Chasson, & Summers, 2015; Gray, Msall, & Msall, 2008; McStay et al., 2014a; McStay, Trembath, & Dissanayake, 2014b; Summers et al., 2007). However, there was a lack of studies regarding the interrelations among parental stress, FQOL, and family-professional partnerships in the literature. The examination of these interrelations might have implications for professionals to identify the possible paths to help parents reduce their stress and improve their FQOL. Therefore, this study aimed to examine these interrelations. In the following sections, we present a brief overview of the literature concerning the relations of parental stress, FQOL, and family-teacher partnerships as well as the significance of the study to provide the background and rationale for this study.
Parental stress is the stress associated with the role of being a parent (Berry & Jones, 1995). It is the imbalance between the demands of parenting and available resources perceived by an individual parent (Raphael, Zhang, Liu, & Giardino, 2010). However, stress has a negative connotation that may miss potential positive or neutral impacts of disability on the family (Taunt & Hastings, 2002). Therefore, FQOL is advocated as a way to capture a comprehensive index of family outcomes (Summers, Poston et al., 2005). FQOL means “[c]onditions where the family’s needs are met, and family members enjoy their life together as a family and have the chance to do things which are important to them” (Park et al., 2003, p. 368). The concept of FQOL is extended from the quality of life of an individual (Davis & Gavidia-Payne, 2009; Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Rillotta, Kirby, Shearer, & Nettelbeck, 2012), which is based on the perception held by an individual concerning various aspects of life experiences, including personal characteristics, objective life conditions, and perceptions of significant others (Cella, 1994, Felce and Perry, 1995, Schalock, 1994).
Over the past few decades, many researchers have examined various factors related to parental stress in parents of children with ASD (e.g., child characteristics, social support), and suggested many different types of intervention services for professionals to help parents reduce their stress (e.g., Davis and Carter, 2008, Ekas et al., 2010, Hall and Graff, 2011, Lyons et al., 2010; Tomanik, Harris, & Hawkins, 2004). However, little is known about the effect and impact of FQOL on parental stress for these families. Lee, Hwang, Chen, and Chien (2009) examined the relations among parental stress and quality of life of caregivers of preschool children with very low birth weights. Using structural equation modeling, quality of life of the caregivers was directly related to parental stress. Recognizing that the quality of life of the caregivers of preschool children with very low birth weights directly affects their parental stress, this indicates that parental satisfaction concerning FQOL might also affect parental stress in family of children with ASD.
Although the focus on FQOL within the field of ASD is a recent concept, several studies have examined various factors related to FQOL of children with ASD (e.g., behavior problems, family hardiness, marital adjustment), and recommended several ways for professionals to help these families enhance their FQOL (e.g., Boehm et al., 2015; Iarocci, 2015; McStay et al., 2014a, McStay et al., 2014b; Pozo, Sarriá, & Brioso, 2014). However, no research was found that examined the effect and impact of parental stress on FQOL for these families. Lee, Lopata et al. (2009) investigated the physical and mental health-related quality of life of parents of children with high-functioning ASD. The findings indicated that compared to parents of typical children, parents of children with high-functioning ASD reported higher stress. In addition, parental stress was a significant predictor for both physical and mental health-related quality of life. Recognizing that parental stress is a significant predictor for health-related quality of life for parents of children with high-functioning ASD, this indicates that parental stress might then have an effect on FQOL for families of children with ASD across a broader range of the spectrum. From the aforementioned statement, parental stress and FQOL might have a bidirectional relation for families of children with ASD.
The collaborative partnership between family and professionals has been recommended for decades to provide effective services for children with disabilities (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004). This concept has been incorporated in one of six principles of the Individuals with Disabilities Education Act (2004) in developing and implementing special education programs (Blue-Banning et al., 2004, Summers et al., 2005). Summers et al. (2005, p. 66) defined family-professional partnerships as “mutually supportive interactions between families and professionals, focused on meeting the needs of children and families, and characterized by a sense of competence, commitment, equality, positive communication, respect, and trust.” They considered these partnerships as multidisciplinary collaboration, service, integration, and family/parent involvement. It is imperative to foster these mutually supportive interactions between teachers and families of students with disabilities so that the needs of all participants (i.e., students with disabilities and their families) are met (Blue-Banning et al., 2004, Summers et al., 2005; Summers, Hoffman, Marquis, Turnbull, & Poston, 2005). Many researchers believe that professional support for families of children with disabilities that targets parental needs, particularly in regards to information, partnership, and understanding will associate with positive parent, family, and child outcomes (Davis & Gavidia-Payne, 2009; Dunst, Trivette, & Hamby, 2007; Knox, Parmenter, Atkinson, & Yazbeck, 2000).
Studies of Davis and Gavidia-Payne (2009), Eskow et al. (2015), and Summers et al. (2007) indicate that family-professional partnerships are related to FQOL for families of children with disabilities. Since parental stress and FQOL might have a bidirectional relation, it can be argued that there might be interrelations among parental stress, FQOL, and family-professional partnerships for family of children with disabilities and these interrelations might also apply to families of children with ASD. However, the interrelations need to be further examined.
Many parents of children with ASD feel that they are not welcome in their child’s school and often seen as adversarial, demanding, and hostile by the educational system (Stoner & Angell, 2006). This can result in families expressing dissatisfaction with the school services provided to their children (Starr & Foy, 2012; Stoner & Angell,2006). Thus, more research concerning family partnerships with educational professionals (especially, teachers who work with them the most) and the relations of the partnerships to parental stress and FQOL for these families is needed (Hodge and Runswick-Cole, 2008, Kasahara and Turnbull, 2005, Rogers, 2011).
Although many studies identified the barriers to positive family-professional partnerships (e.g., Blue-Banning et al., 2004, Stoner et al., 2005), the understanding of the interrelations of parental stress, FQOL, and family-professional partnerships might help the educational professionals (including teachers) examine the ways to assist parents of children with ASD to relieve their stress and improve their FQOL, which might, in turn, increase parents’ satisfaction with family-professional partnerships. Especially, Hayes and Watson (2013) used a meta-analysis to compare the experience of stress in parents of children with or without ASD and indicated that parents of children with ASD have higher stress levels than parents of children with typical development and other disabilities. They suggested that these families deserve attention and intervention to moderate or mediate their parental stress for facilitating their family functioning.
The purpose of this study was to determine the interrelations among parental stress, FQOL, and family-teacher partnerships in families of children with ASD. The two hypothesized models (see Fig. 1, Fig. 2) depicted the interrelations among parental stress, FQOL, and family-teacher partnerships. That is, how the family-teacher partnerships affect the direction and/or strength of the relation between parental stress and FQOL. The specific research questions that addressed in this study were: (1) did the perceived parental stress have a direct effect on the parental satisfaction concerning FQOL and vice versa? (2) did the perceived family-teacher partnerships have a direct effect on the level of satisfaction of FQOL and the perceived parental stress? and (3) did the perceived family-teacher partnerships have an effect on the relation between the perceived parental stress and the parental satisfaction concerning FQOL? Based on the research questions, the following hypotheses were formed for the testing: (1) the perceived parental stress had a direct effect on the parental satisfaction concerning FQOL; (2) the parental satisfaction concerning FQOL had a direct effect on the perceived parental stress; (3) the perceived family-teacher partnerships had a direct effect on the parental satisfaction concerning FQOL; (4) the perceived family-teacher partnerships had a direct effect on the perceived parental stress; (5) the perceived family-teacher partnerships had an indirect effect on the parental satisfaction concerning FQOL through the perceived parental stress; and (6) the perceived family-teacher partnerships had an indirect effect on the perceived parental stress through the parental satisfaction concerning FQOL.
Section snippets
Participants
The Individuals with Disabilities Education Act (2004) in the United States mandates the provision of a free and appropriate public school education for students with disabilities ages 3–21 years. Therefore, parents who had school children with ASD aged 3–21 were recruited to participate in this study. Researchers invited parents to participate in this study by using the databases of an autism center located at a university, a state autism organization, a regional autism organization, and a
Variable relations
Correlations among parental stress, the five domains of FQOL, FQOL, and family-teacher partnerships were calculated using Pearson’s r (see Table 3). A significant positive association was found between FQOL and family-teacher partnerships (r = .372). Each of the five domains of FQOL also had a significant positive association with family-teacher partnerships. A significant negative association was found between FQOL and parental stress (r = −.494). Each of the five domains of FQOL also had a
Discussion
This study incorporated the three variables (i.e., parental stress, FQOL, family-teacher partnerships) to ascertain their interrelations for families of children with ASD. Results showed that parental stress and FQOL had a bidirectional relation. Family-teacher partnerships had a direct effect on FQOL, and an indirect effect on parental stress through FQOL. The results of this study are further discussed in the following passage.
When parents of children with ASD perceived a higher level of
Conclusion
Overall, this study helps determine the interrelations among parental stress, FQOL, and family-teacher partnerships for families of children with ASD. The following recommendations are suggested for further study. Future research is needed to further determine the predictors of parental stress, family-teacher partnerships, and FQOL as well as examine the longitudinal relations among these three important aspects for families of children with ASD. Future research may consider conducting studies
Acknowledgments
The authors acknowledge the support by the Doug Sperber Research Grant, from the UNLV Center for Autism Spectrum Disorders. We would also like to acknowledge the families who donated their time to participate in this research.
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