Experience and outcomes of stepping stones triple P for families of children with autism
Introduction
Autism spectrum disorders (hereafter referred to as ‘autism’) represents a heterogeneous group of disorders characterized by impairments in communication and social interaction, and the presence of restricted and repetitive behaviours (APA, 2000). Additionally, children with autism exhibit challenging and disruptive behaviours at higher rates than their typically developing peers or peers with intellectual disability (Brereton, Tonge, & Einfeld, 2006). These challenging and disruptive behaviours place high demands on their parents and families, and many parents perceive that their adaptive resources, including but not limited to their energy, knowledge and skills, are insufficient to meet these demands (Dunlop and Fox, 1999, Stein et al., 2011). This can contribute to high levels of stress, anxiety and depression, which are prevalent among parents of children with autism (Lecavalier, Leone, & Wiltz, 2006). Stressed parents are, in turn, more likely to respond to their children in ways that exacerbate or reinforce problem behaviours (Hastings, 2002).
To offset demands and increase their resources, parents of children with autism are turning to professionals for assistance with their child's disruptive behaviours. Professional services in autism have historically been delivered to the child, and focused on child behaviour (e.g., Applied Behaviour Analysis; Lovaas, Koegel, Simmons, & Long, 1973). Although these programmes can be effective at decreasing disruptive behaviours in children with autism, they are costly in terms of time and money, and are not feasible or sustainable for many families or funders. Additionally, although parents may have been involved as co-therapists in these treatment programmes at times, the emphasis was not directly on building parental adaptive resources. In fact, little emphasis in autism intervention has been placed on building parental knowledge, skills and confidence, and in turn, their self-efficacy in dealing with their child's problem behaviours (Brookman-Frazee, Stahmer, Baker-Ericzen, & Tsai, 2006). Building parental self-efficacy is important since it is related to improved parental well-being, decreased parental stress, and increased parental involvement in intervention programmes overall (Coleman and Karraker, 1997, Hastings and Symes, 2002, Solish and Perry, 2008).
Families of children with disabilities and disruptive behaviours, including autism, require more external assistance than families of children with disabilities without disruptive behaviours (Quine & Pahl, 1985), although, paradoxically, disruptive behaviours can also limit the availability of professional services (Hodgetts et al., 2013). With current prevalence estimates of 1 in 88 children, representing a 600% increase in the prevalence of autism over the past 20 years (Centre for Disease Control, 2012), the need and demand for supports and services for children with autism and their families is significant, and funders and professionals are looking for effective, sustainable, cost-effective ways of supporting increasing numbers of children with autism and their families.
To build parental adaptive resources and strengthen families of children with autism, many professionals and jurisdictions are using a multilevel system of behavioural family intervention know as stepping stones triple P (SSTP). SSTP is a variant on the triple P – positive parenting programme, which was designed for parents of children who have or who are at risk of developing behaviour problems. There is substantial evidence that triple P strategies ‘work’, resulting in decreases in children's disruptive behaviour and increased positive parenting practices in a variety of populations of children without disabilities (Sanders, 1999). SSTP incorporates the behaviour modification strategies of triple P, and additional strategies from the disability literature. Readers are directed to Sanders, Mazzucchelli, and Studman (2004) for a detailed description of the development and specific components of SSTP.
Participation in SSTP has led to reduced disruptive behaviours in children with Down Syndrome, Cerebral Palsy, Fragile X Syndrome and general developmental delay (Roberts et al., 2006, Sanders, 1999), and more recently in children with autism when conducted in a partial group format with the addition of other evidence-based strategies including Comic Strip Conversations and Social Stories (Whittingham, Sofronoff, Sheffield, & Sanders, 2009a). Additionally, SSTP conducted in this format resulted in reductions in dysfunctional parenting styles for some families (Whittingham et al., 2009a), and potentially had an effect (at a relaxed alpha level) on parental attributions about their child's misbehaviour (Whittingham, Sofronoff, Sheffield, & Sanders, 2009b). In other words, after participation in the modified group format of SSTP, parents were more likely to attribute misbehaviour to environmental or situational factors, and not something internal to the child. This finding and the need for future research in this area is significant because parents of children with autism, as a group, differ from parents of children with other disabilities: they more often attribute disruptive behaviour to their child's diagnosis rather than typical childhood behavioural problems (Dunn et al., 2001, Howlin and Rutter, 1987). Therefore, they often report that standard parenting programmes will not work for their child and family because the behaviours are internal to the child, and are not under their control (Whittingham, Sofronoff, & Sheffield, 2006).
Sofronoff, Jahnel, and Sanders (2011) used a randomized, controlled trial (n = 53; 45% parents of children with autism) to investigate the effects of an adapted, 2 sessions, group-seminar SSTP format. They concluded that this format of SSTP was effective in changing parents’ perceptions of child behaviour problems (i.e., parents reported fewer behaviour problems even though there was no objective decrease in the frequency of problem behaviours), and in decreasing dysfunctional parenting styles and parental conflicts over child-rearing. Although they did not find a significant increase in parental efficacy post-intervention, it was significantly increased at a 3-month follow-up, which the authors attributed to a sleeper effect once they gained confidence through practice. This study provides preliminary evidence for a more time- and cost-effective method of behavioural family intervention, which could have important implications for service delivery due to the increasing prevalence of autism and corresponding rising costs of treatment.
Although the work to date on SSTP provides some evidence for the use of this programme with families of children with autism, no independent studies (i.e., that do not include the originators of triple P) on the efficacy or effectiveness of this programme with families of children with autism have been published. Furthermore, the rigorous RCT that was conducted with families of children with autism used an adapted format and included other empirically supported treatments, which limits generalizability to the standard SSTP. Finally, although efficacy-studies are important in determining whether or not an intervention can result in statistically and clinically significant changes, it does not provide information on the feasibility or generalizability of the intervention in the context of families’ everyday lives. This is significant because parents, especially mothers, of children with autism have higher caregiving demands than mothers of children without disabilities, for example related to their child's personal care and transportation (Sawyer et al., 2010), and potentially time-consuming roles atypical of normal parenting, such as advocate, “therapist”, and service coordinator (McCann, Bull, & Winzenberg, 2012). Thus, finding the time to participate in intensive behavioural family interventions may be difficult for families of children with autism.
The purpose of this study was to investigate the experience and perceived outcomes of SSTP for parents of children with autism. Our primary ‘hypothesis’ was that the experience of applying the knowledge and skills acquired through SSTP would result in fundamental changes in the meanings parent's ascribe to their child's behaviours and to their own experience as parents and caregivers. Put differently, we expected that parents would break ‘habits of mind’ (e.g., “there is nothing I can do…”) that produce or reinforce low self-efficacy, maladaptive parenting practices, and unsustainable levels of dependency on professionals and services. Specifically, we hypothesized that SSTP would contribute to:
- (1)
Improved parental self-efficacy in dealing with disruptive behaviour in their child with autism;
- (2)
A decrease in the negative impact that a child's disruptive behaviour has on his or her parents’ psychological well-being; and,
- (3)
Decreased perceived need or desire for external supports in dealing with problem behaviours.
Section snippets
Design, recruitment and participants
Ethical approval was obtained through the Health Research Ethics Board at the affiliated university. An in-depth, prospective, mixed-methods, multiple case-study design was used. Potential participants, purposefully sampled for diversity in culture and educational backgrounds, and children with autism of different ages, were recruited through two local service providers who served families with children with autism. The SSTP practitioner at these service providers asked families who had already
Results
Quantitative data are summarized in Table 4 and qualitative data are summarized in Table 5, Table 6. Data from quantitative and qualitative findings are integrated below, addressing the study hypotheses, and findings important to our formative understanding of the use of SSTP for families of children with autism in the context of daily life. Three keys themes emerged from the parent interviews, which all related to how parents perceived and dealt with their child with autism's challenging
Discussion
This is the first independent evaluation of Standard SSTP with families of children with autism of which we are aware. Additionally, this study was conducted in the context of families’ daily lives, and thus provides important information on the feasibility and effectiveness, beyond efficacy, of SSTP for families of children with autism.
Our main hypothesis was supported. Overall, participation in SSTP was associated with fundamental, positive changes in the meanings parents ascribed to their
Conclusions
This study provides preliminary evidence that participation in SSTP is associated with improved parental self-efficacy related to dealing with disruptive behaviours for parents of children with autism. Additionally, participation in SSTP may also contribute to improvements in parental adjustment and well-being. Although our sample for this outcome was small, two of the three participants for whom we had data on these outcomes showed improvements on these outcomes following participation in
Acknowledgements
This study was supported by a Community-Based Research Grant from the Alberta Centre for Child Family and Community Research (ACCFCR).
We gratefully thank the participating families for making time in their busy lives; the Centre for Autism Services Alberta for their continuous support for research that can help families of children with autism and for their help with recruitment; to our practitioners RW & JM for your time and expertise, and to our practitioner FW for her time, expertise and
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