Date

2015

Document Type

Dissertation

Degree

Doctor of Philosophy

Department

School Psychology

First Adviser

DuPaul, George J.

Other advisers/committee members

Kern, Lee; Manz, Patricia; Power, Thomas

Abstract

Cystic Fibrosis (CF) is one of the most common, life-threatening genetic disorders impactingchildren (Cystic Fibrosis Foundation, n.d.) and, although rare, has a broad impact on children's health, educational, and social-emotional functioning. Current interventions for children with CF lack comprehensiveness, do not occur in the school setting, and fail to employ systems collaboration. Further, interventions have taken a more reactive rather than proactive approach to meeting children's needs. This investigation addressed current gaps in the literature by identifying children's health, educational, and social-emotional needs and potential intervention strategies to be employed as children with CF first enter elementary school. The study utilized participatory action research methods (e.g., focus groups, individual interviews, advisory panel) to gain information from parents and caregivers of children with CF (n = 11), school personnel (n = 15), and CF health care professionals (n = 14) and to collaboratively identify intervention strategies perceived to be beneficial, acceptable, and feasible for implementation. Results indicated primary areas for intervention to include nutrition (e.g., malabsorption), health-related treatments (e.g., medications), educational difficulties (e.g., falling behind), disclosure, social support, and mental health (e.g., anxiety, depression). Comprehensive strategies (e.g., formalized plans, use of technology, multisystemic collaboration) to address primary concerns are discussed. It will be important for schools, families, and health care professionals to collaboratively plan to meet the comprehensive needs of children with CF in schools by increasing communication andeducation across systems.

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