Defining Stress and Crisis As Experienced By Parents of Children with Autism Navigating Intervention: Sub-Analysis of a Qualitative Study

Background:  Sources of stress associated with parenting a child with autism have been widely documented. Sources of stress attributable to navigating autism intervention, however, have received less attention. Stress has been associated with serious consequences for parents, such as anxiety and depression. These can interfere both with parental functioning, and parents’ crucial role as navigators of intervention to address diverse autism-related concerns—endangering wellbeing of the autism unit. To our knowledge, stress and crisis have rarely been directly studied, and remain conceptually undefined, specifically from parents’ perspectives with reference to their process of navigating intervention.

Objectives: This work is a sub-analysis of a large qualitative study whose aim was to explain how Ontario parents of children with autism navigate intervention. The purpose of the sub-analysis is to characterize and conceptually define stress and crisis, as experienced by such parents.

Methods:  A qualitative grounded theory study was conducted to explain, in depth, the social psychological process parents of children with autism use to navigate intervention. Data comprised primarily 45 audio-recorded and transcribed intensive interviews with 9 professionals and 32 parents from urban and rural regions across Ontario with maximally varying perspectives; data also included documents (e.g., parent- and professional-authored books). Data collection and verification of the evolving categories proceeded iteratively according to theoretical sampling informed by ongoing analysis. Analysis consisted of constant comparison employed in coding and concept development, analytic memo writing, and final integrative writing on the topics of stress and crisis, throughout which we ensured findings were grounded in participant data.

Results: We defined stress according to parent accounts as an individual’s subjective emotional experience and physiological response to a triggering object or event that the individual experiences or perceives as an imminent threat to personal wellbeing (including that of a child) or continued ability to function. Distinguishing causes from consequences of stress required careful analytic reference to delimited empirical cases. Diverse subtypes of stress were defined according to underlying causes; some common consequences, meanwhile, could be traced back to these subtypes. A typology of stress was thus constructed. We defined crisis to occur when stress (due to parenting, navigating, etc.) reaches a level that disrupts homeostasis of the affected parent-related functioning system (psychological self, physical self, family, or relationship) and results in either a sudden or progressive loss of function, and sometimes a sense that a catastrophic failure is imminent.

Conclusions: The definitions derived from this sub-analysis contribute coherence and family-centeredness to the concepts of stress and crisis because the parent is located as the central actor in defining and responding to stress in her situation. The typology of stress subtypes has strong fit with a substantial qualitative dataset, suggesting potential generalizability. These findings will be useful for increasing the relevance and specificity of future research into and measurement of stress among parents of children with autism. Findings will also be informative to professionals seeking to understand mechanisms and consequences of stress in such parents, as they vary over their long-term navigating process.