Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Health Information Science

Program

Health Information Science

Supervisor

Burkell, Jacquelyn

Abstract

The purpose of this research is to gain insight into the ongoing information and support needs of parents of children with epilepsy. Using descriptive content analysis of text found in twenty client case files, communication logs, and email correspondence, parents requested information and support provided by a community epilepsy agency to mitigate changes in treatment protocols, challenging child behavior, rushed healthcare provider communication, lack of access to mental health services and barriers encountered in the school system. Parents requested system navigation and school advocacy from community epilepsy agency staff intermediaries to develop rescue medication protocols and to mediate parent-school disputes. Parents requested peer mentors to reduce feelings of uncertainty, worry and social isolation. The findings from this research indicate families would benefit from coordinated care between the clinic and the community to reduce social isolation and to cope with the unpredictability, fear and lifestyle challenges inherent in childhood epilepsy.

Summary for Lay Audience

This research is a descriptive content analysis of text found in the client case files of twenty families who requested information and support from a community epilepsy agency over a 36-month period. The overall aim of this research is to provide a composite picture of engagement with a community epilepsy agency from the perspective of a parent supporting a child with epilepsy and to identify both the content and context of parent requests for ongoing information and support. Within the field of health information science, the research will examine the types of information and support that are requested by parents and the psychosocial context that leads to these requests providing insights into the information needs that may not be met through patient education and the psychosocial support needs that may not be met in the clinic. Through the analysis of the text found in the twenty client case files, communication logs, and email correspondence, parents requested information and support provided by a community epilepsy agency to mitigate changes in treatment protocols, challenging child behavior, rushed healthcare provider communication, lack of access to mental health services and barriers encountered in the school system. Parents requested system navigation and school advocacy from community epilepsy agency staff intermediaries to develop rescue medication protocols and to mediate parent-school disputes. Parents requested peer mentors to reduce feelings of uncertainty, worry and social isolation. The findings from this research indicate families would benefit from coordinated care between the clinic and the community to reduce social isolation and to cope with the unpredictability, fear and lifestyle challenges inherent in childhood epilepsy.

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