Critical Insights: Incidents that Help and Hinder Parents’ Transition Related to Their Child’s Developmental Diagnosis

Abstract

Individuals structure their lives around their expectations associated with phases of life (Becker, 1997). Starting a new job, starting a family and even dropping a child off for their first day of kindergarten are events that represent a change in an individual’s social role. Individuals expectations about these changes and the meanings that are assigned to these events help people make sense of their world. An unanticipated transition can occur when an individual’s life unfolds in surprising ways, such as when a child’s development is different from what the parent expects (Broski & Dunn, 2018; Messias, Gilliss, Sparacino, Tong, & Foote, 1995). Transition theories guide professional practice with families and children; and they inform how professionals describe events and stages in family life. Transition theories underpin how family research is conducted and in turn, may influence how families see themselves. For example, Kubler Ross’s “stages of grief” is often used to describe how parents experience becoming the parent of a child with developmental differences (Burrell, Ives, & Unwin, 2017; Frye, 2015). My dissertation study builds on the work of my three written comprehensive examinations. In my first comprehensive examination “Fostering Insights: A Strengths-Based Theory of Parental Transformation,” I proposed an alternative to transition theories that are deficit based. I used theory derivation, a method of theory development that uses a source theory from a different field, to “open” an area of research for new insights. I used Dr. Martha Baird’s “Theory of Cultural Transition in Refugee Women” as the source theory for the strengths-based theory of parental transformation. Theory derivation also includes reviewing relevant literature. Additionally, I conducted a content analysis of 5 autobiographies written by parents of a child with an autism spectrum disorder to provide examples of the theory’s concepts. The theory proposes that there are 3 stages associated with parental transition, an initial stage of parents’ awareness of their child’s differences, a liminal stage where parents are in between social roles, and a stage of transformation where parents adapt to their new social role. The theory also proposes there are three primary domains associated with parents’ transition. The child domain relates to the parents’ focus on the child’s differences and strengths. The connections with others domain relates to changes that occur in parents’ relationships with their family, friends, and others in the community. The parental competence domain relates to parents’ ability to discern what is best for themselves and for their family. This manuscript was the original submission and the basis for the article published in the Journal of Child and Family Studies (Broski & Dunn, 2018). My second comprehensive exam, “Evaluating the Strengths Based Theory of Parental Transformation” builds on the work of my first paper by exploring questions about the adequacy of the theory to describe parents’ experiences. An assumption of the theory is that parents transition involves “stages” of transition. While this concept is commonly accepted in transition theories, I wanted to evaluate this aspect of the theory, and challenge the notion that parents transition involves three stages. Thirty-two parents completed an online questionnaire consisting of 81 items derived from the strengths- based theory of parental transformation. The findings of this study indicate that parents associated the first stage of transition with becoming aware of their child’s differences, the liminal stage was associated with uncertainty, the transformation stage was associated with recognizing their child’s strengths and confidence in their parenting skills. My third comprehensive exam, “Exploring the Development of Parents’ Mental Models Related to Their Child’s Developmental Diagnosis” builds on the work of my first and second papers by exploring how parents experience transition. In this study, I conducted a discourse analysis of responses to six open-ended survey questions. Twenty-two parents were eligible for inclusion in this study. The results revealed that parents associate awareness of their child’s differences with searching for information and feelings of uncertainty and fearfulness. Parents associated the liminal stage of transition with frustration and confusion as the adapt to a new state. Parents associated the transformation stage with confidence, pride and adaptation. My comprehensive examinations provided the foundational work leading to my dissertation study. My previous research indicated that parents experience changes in their thoughts, feelings, and behaviors throughout transition (Broski & Dunn, 2018a, 2018b). I also found discernible differences in the social contexts parents referenced throughout transition, however it was not clear what facilitated transition and what process may stand in the way. My dissertation study focuses on characterizing incidents that parents describe as helping and hindering their transition related to their child’s developmental diagnosis. The findings of this study indicate that incidents that helped parents in the early stages of transition are associated with using and allocating resources. Incidents that helped parents in the later stages of transition are associated with seeing possibilities for their child and for themselves. Incidents that that hindered parents' transition involved parents discovering a need to set boundaries, as well as the parent feeling uncertain or obligated. Because parents influence outcomes for children, there is a need to provide an alternative to deficit-based frameworks to describe their transition. My dissertation research advances knowledge related to children and families by contributing to a growing body of research that provides an alternative to studies that suggest parents of children with developmental differences must grieve, be in denial or experience on-going sorrow. The strengths-based theory of parental transformation contributes to child and family research by providing a framework that aligns with contemporary paradigms of disability.