Making Your Own Way: A Qualitative Study of How Ontario Parents of Children with Autism Navigate Intervention

Saturday, May 14, 2016: 11:30 AM-1:30 PM
Hall A (Baltimore Convention Center)
S. J. Gentles1, D. B. Nicholas2, K. A. McKibbon3, S. M. Jack4 and P. Szatmari5, (1)CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada, (2)University of Calgary, Edmonton, AB, Canada, (3)Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada, (4)School of Nursing, McMaster University, Hamilton, ON, Canada, (5)Centre for Addiction and Mental Health, Toronto, ON, Canada
Background:   Parents face substantial uncertainty and stress as they assume an unusually high proportion of the responsibility for navigating intervention to address autism-related concerns. There is a lack of holistic research explaining how parents cope and respond to the complexity and obstacles that characterize their situation as they navigate multiple forms of intervention across multiple systems of care, whether publicly-funded or private.

Objectives:   The purpose of this qualitative study was to develop a social psychological explanation in the form of a substantive theory of how Ontario parents of children with autism navigate intervention under the complex informational conditions that characterize parents’ shared situation.

Methods:   Grounded theory methods, a constructivist approach, and symbolic interactionist analytic framework were chosen as appropriate means to guide research and achieve the study objectives. The findings are primarily based on 45 in-depth (90-minute) interviews with 32 mothers from different urban and rural Ontario regions (fathers participating in 3 cases), and 9 professionals with extensive expertise supporting parents. Documents were also analyzed. 

Results:   The central process of navigating intervention, labeled making your own way, consists of adjusting to the need to navigate intervention, in which parents construct the meanings that prepare and motivate them for responding to their contextual situation by taking action to navigate intervention. Adjusting consists of 4 interdependent sub-processes that together explain parents’ action: defining concerns, informing the self, seeing what is involved, and emotionally adapting to problematic aspects of parents’ situation. Emotionally adapting for new parents commonly involves accepting the possibility of autism, releasing culturally-based hopes and expectations for the child’s future, accepting an uncertain and fearful future for the child, enduring the strains, and redefining one’s roles and self according to new occupational requirements—all important and necessary means by which parents become prepared and motivated for taking action. The central process of making your own way can be further understood according to three overlapping heuristic stages: beginning the autism journey, handling transitions, and easing off. Many parents develop a strong sense of urgency at one or more key points in their journey to which they commonly respond by going into high gear, expending substantial personal resources sometimes at unsustainable rates in the pursuit of intervention. Consequences of going into high gear and other aspects of making your own waywill be discussed.

Conclusions:   This research outlines a process in which parents’ social psychological understandings provide an explanation for their actions as they navigate intervention, including an outline of the mechanisms by which both harms and benefits (affecting the child, parent, or family) can occur as a specific consequence of parents’ process of making their own way. The findings will be informative to people from any jurisdiction concerned with modifying individual professional practice or broader care systems to optimize support for parents at various stages of their process, or journey; additionally, they suggest ways to harness parents’ exceptional expertise, motivation, and energy to achieve better outcomes for the autism unit within a cooperative family-centered approach to intervention.