Intervention decision-making of parents of young children with autism spectrum disorders

This thesis by publication presents a series of related papers examining the decision-making of parents of children with autism spectrum disorders (ASD) regarding the interventions that they use with their children. The primary aims of the program of research were to investigate the range of interventions being used, how parents made decisions about intervention use, and whether being provided with information about the efficacy of interventions would influence their decision-making. In recent years there have been an increasing number of interventions available for children with ASD. Although studies reporting parent use of different interventions exist there had been no attempts to synthesise the findings. Therefore, a systematic review of parent reports of interventions used with their children with ASD was conducted. It revealed a global trend of parents using multiple interventions, with varying levels of efficacy, concurrently. Although Australian data about intervention use were sparse, a small survey study revealed a similar trend in Australia as that reported in the international studies. To address the question of why parents choose, reject, continue, or discontinue interventions, a review of studies reporting factors declared by parents as influencing their decision-making was undertaken. This was the first review of this type and provided insight into factors reported to be considered by parents. Limited data were available from populations in Australia. Additionally, few studies examined the weight placed by parents on different factors in decision-making. With the intent to provide information to inform later survey research, interviews were conducted with Australian parents of preschool-age children with ASD. Qualitative analysis of these interviews gave preliminary insights into why these parents valued recommendations from some sources over others and indicated that parents do regard some factors as more important than others in their decision-making. The review of declared factors in parent decision-making and results of the exploratory qualitative study were used to develop a survey examining the importance of different factors in decisions to use and reject interventions. The results of this survey supported the hypothesis that parents placed greater importance on some factors than others in decision-making. However, the factors that were most frequently reported in previous studies (advice from others) were ranked significantly lower than the other factors, indicating that the frequency with which decision-making factors are reported in the literature may not be an accurate reflection of the importance of the factors in parental decision-making. In addition, research evidence was ranked lower in importance than a number of other factors. Further analysis of the survey data examining the possible underlying parent and child factors that may have been influencing the decisions of the parents revealed few significant relationships between underlying factors and the number or type of interventions used, suggesting that a complex and individualised interplay of factors is likely to be involved. Based on the preceding reviews and studies, it appeared that research evidence was less important than several other factors in parental decision-making. Thus, a small scale intervention study was conducted to investigate whether providing parents with a DVD training package affected their understanding of the research evidence and desire to use interventions. The package provided guidelines for choosing interventions and instructions for accessing two websites, which were assessed by external experts as providing generally accurate information about the efficacy of different interventions for ASD. The results of a pilot intervention study indicated that the intervention appeared to increase the parents’ confidence in choosing interventions but did not appear to improve their understanding of the level of research support for interventions or change their desire to use strategies with a stronger evidence base.