Stress among caregivers of autistic children: Conceptual analysis and verification using two qualitative datasets

In this two-part study, we first present the results of a sub-analysis of empirical data from a large grounded theory study of caregivers' (parents) navigating autism-related care. The purpose of this analysis was to develop a conceptual overview of stress and crisis. We then describe the results and feasibility of using a framework analysis approach to verify and extend this conceptual analysis using qualitative survey data from a comparable population. Finally, we compare the conceptual findings to existing stress theory. While the grounded theory analysis was not aimed at producing a full theory of stress, multiple key elements of the resulting conceptual overview are consistent with prior stress theory. A potentially novel contribution is the conceptualization of social-psychological stress as an evolving process metaphorically analogous to a physiological model of stress that accurately fitted caregivers' experience. Specifically, it accounts for early empowering consequences of stress in terms of caregivers' motivation and capacity for action, the progressive destructive consequences in terms of its effects on caregivers' emotional and even physical well-being, and the evolving and nonlinear process of stress over the life course. The definition for crisis, meanwhile, acknowledges that different systems can be in crisis from the caregiver's perspective, and that it can be triggered by progressive buildups of stress and not just acute major triggering events. The insights from this analysis have implications for improving support professionals' sensitivity to the empirical caregiver-perspective realities of stress at a conceptual level, and for improving assessment of crisis specifically in this population. The framework analysis exercise demonstrated some utility of the qualitative survey data for verifying and extending this theoretical analysis, despite the limitations compared to in-depth interview data discussed. This has implications for improving the utilization of qualitative data often collected in survey research.