Needs Assessment of Parent Training Programs for Parents of Children with Autism Spectrum Disorder Using a Phenomenological Approach
Parenting a child with autism spectrum disorder (ASD) is often associated with high stress, depression, anxiety, and reduced quality of life due to the ongoing nature of care (Seltzer, Krauss, Orsmond & Vestal, 2001; Evans, 2010). To remediate the difficulties that parents of children with ASD experience, parent training programs have become an integral and necessary component in the treatment of ASD. The most common type of parent training programs is behavioral parent training, based on the principles of ABA (Najdowski & Gould, 2014). Despite its advantages, researchers have found parent involvement in behavioral parent training to be more burdensome than beneficial; for some parents the demands and expectations are a source of stress. More recently, mindfulness-based parent training has been implemented with some success in reducing the stress of this population (Cachia, Anderson & Moore, 2015). However, parents often opt out of such programs because they want to learn more applied skills to manage their child’s behaviors; these parental attitudes present a barrier for wide application of these programs. A review of the parent training literature indicates that parent programming is not sufficiently meeting the needs of parents (Cachia et al., 2015; Najdowski & Gould, 2014). To date, parent training research studies have examined either child-based outcomes or parent-based outcomes but never addressed these concerns simultaneously, despite the well-established connection between child behaviors and parent stress. Thus, there is a need to move toward more ecologically valid models of parent training programs that focus on parental and contextual factors, while targeting both child and parent outcomes. From a developmental perspective, the Bioecological Model of Human Development (Bronfenbrenner, 2005; Bronfenbrenner & Ceci, 1994; Bronfenbrenner & Morris, 2006) recognizes the complex, reciprocal relationship between parent and child that occurs in many contexts (e.g., within the family, in the home and community). In order to better meet the needs of this population it might be imperative to view the parent-child relationship within the broader familial context, or to create a good “contextual fit” between parent training and the family context. In light of the shortcomings of the current parent training models, a needs assessment of parent training programs should be conducted to better understand the lived experiences of parents of children with ASD and provide clear recommendations for future programming. Using a qualitative research design, the purpose of the present study was to examine parents’ lived experiences while placing them in a relational, ecological context, assess factors and supports that will influence the effectiveness of parent training programming, and provide recommendations to help future practitioners determine what kind of parent training programs that parents of children with ASD may find useful. Self-report measures, semi-structured observations, and semi-structured, open-ended interviews were used to conduct a needs assessment of parent training programs using a phenomenological approach. The findings of the present study highlighted the unique experiences and confirm the known ways that parents of children with ASD experience autism and the ways that healthcare providers can support them. Similar to previous research, it was found that parents of children with ASD experience significant stress related to their parenting experience, and that ASD impacts many facets of day-to-day life including family functioning, marital relationships, siblings, and social contexts. Additionally, parents reported a need for parent training programming. They explicitly communicated their needs for behavioral parent training (i.e., learning how to engage their child and manage the child’s more challenging behaviors), parent education (i.e., resources and information related to various aspects of ASD), and support (i.e., talking with other parents, voicing their concerns). Parents are in need of effective behavior management strategies and coping strategies, especially to address parental stress. Interestingly, new information was obtained that was not reported in previous literature. First, parents reported their experiences with grief throughout the child’s lifespan. Parents reported experiencing grief and a sense of loss each time they were faced with developmental milestones that are not being reached by their child with ASD. Second, parents reported a need for support and programs for typically-developing siblings; parents reported concerns with the adjustment of their neurotypical children. Parents specifically reported a need for sibling programming with groups dedicated to typically-developing siblings to share their experiences, ask questions, and receive guidance on interacting with their sibling with ASD. Third, parents reported their need for more family-focused or family-orientated parent training programming; specifically, parents expressed wanting providers to view the parent-child dyad in their home context and within their family environment, and to create treatment plans and goals that fit the family context. Lastly, parents reported that their needs in future parent programming should consist of a mix of informal support systems (i.e., other parents of ASD) and formal support systems (i.e., healthcare providers). This recommendation supports the need for more collaborative efforts between practitioners and parents in parent programming. In conclusion, this needs assessment provides recommendations for sibling support programming given the unique experiences of neurotypical siblings of ASD. Additionally, this needs assessment provides recommendations for parent training programs that are ecologically-valid by considering the family context as well as focusing on equipping parents with the skills to cope and manage their stress by incorporating mindfulness-based strategies, teaching behavior management skills, and providing both formal and informal support. Overall, the researcher suggests that a collaborative and integrated behavioral- and mindfulness-based model may be effective in meeting parent, family, and the child with ASD’s needs. However, further research is needed to assess the effectiveness of this integrated parent training model.
Applied Behavior Analysis (ABA), Autism Spectrum Disorder (ASD), Mindful Parenting, Parent Training, Developmental Psychology
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