Abstract
Previous research suggests that parents may experience higher levels of depression, stress, and uncertainty around the time when their child receives a diagnosis of a developmental disorder. However, there is mounting evidence that some parents experience positive transformation related to their child’s diagnosis. We used an exploratory mixed method design to elicit parents’ mental models related to their child’s developmental diagnosis. We analyzed parents’ responses to six open-ended online survey questions to gain insights about parents’ transition with respect to their child’s diagnosis. Our findings indicate that some parents’ mental models associated with their child’s developmental diagnosis change. We found that parents associate awareness of their child’s differences with feeling uncertain and wanting to search for information. Parents’ descriptions of adapting to a new state was associated with experiencing frustration and confusion with providers and other people outside of their immediate family. Parents’ expressed confidence and pride describing their experiences related to accepting their child’s diagnosis. Parents’ descriptions of acceptance often focused on greater understanding of their needs. Our results suggest that a three-stage model to describe parent transition is appropriate. Additionally, it appears that parent mental models related to their child’s developmental diagnosis evolve over time. Future studies should explore the ways in which gaining insight about parent mental models of transition may inform developing education and other supports for families.
Highlights
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This study used discourse analysis to explore parent mental models of transition.
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Stage 1 was associated with feeling uncertain and seeking information from experts.
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Stage 2 was associated with dissatisfaction, confusion and questioning experts.
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Stage 3 was associated with having strategies in placing and feeling confident.
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Acknowledgements
The authors would like to thank the parents for their participation in this study. The authors also appreciate Dr. Scott Tomchek for his assistance throughout conceptualization and data analysis. We also thank Dr. Matt Lineberry for his constructive feedback of the original paper.
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JB designed the study, collected and analyzed the data, lead the writing the paper, and made final revisions on the paper. WD collaborated with the conceptualization of the study, provided feedback in analyzing and interpreting data and collaborated on writing and revising the paper.
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Broski, J.A., Dunn, W. Parent Mental Models of Transition Related to Their Child’s Developmental Diagnosis. J Child Fam Stud 29, 2377–2389 (2020). https://doi.org/10.1007/s10826-020-01735-z
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DOI: https://doi.org/10.1007/s10826-020-01735-z