Protecting the Educational Needs of Chronically Ill Learners: Lessons Learned From Project Pencil

Theoretical Background and research questions/hypothesis:  This paper describes how the authors used research and evaluation to guide program development of Project PENCIL: Protecting the Educational Needs of Chronically Ill Learners (CIL) and to assess its feasibility. Project PENCIL is a pilot multimedia program to support parents and teachers of elementary CIL. CIL experience myriad negative academic and psychosocial effects, yet parents and teachers experience difficulties applying for and implementing school services to mitigate these effects. Project PENCIL aims to provide parents and teachers with the knowledge and skills to secure and implement school services to help CIL succeed socially and academically at school. We evaluated Project PENCIL’s  pilot materials, which consists of print Parents’ and Teachers’ Guides, using the following research questions: To what extent does  the Parents’ Guide  positively change parents’ knowledge about, attitudes towards, and self-efficacy to secure, navigate, and advocate for school services for their child? To what extent does the Teachers’ Guide positively change teachers’ knowledge about, attitudes towards, and self-efficacy to implement accommodations to support CIL in the classroom?

Methods:  We conducted a feasibility evaluation using a pretest/post-test quasi-experimental design with 60 parents of CIL and 60 teachers to assess the project’s feasibility. We randomly assigned parents and teachers to control and experimental groups. Parents and teachers took separate online pretest and post-test surveys assessing their knowledge, positive attitudes, and self-efficacy on topics related to managing a CIL’s health and education. After completing the pretest, experimental parent group participants received a copy of the Parents' Guide and experimental teacher group participants a copy of the Teachers’ Guide to read. The control group received no intervention. One week later, the parents and teachers took separate online post-test surveys, nearly identical to the pretests but excluding the demographic questions and including questions related to participants’ opinions of the Guides for the experimental group. We analyzed the data using STATA to explore our research questions.

Results:  Participants demonstrated positive gains in knowledge about, attitudes toward, and self-efficacy to secure, navigate, advocate for, and implement educational supports and accommodations to support CIL in the classroom.

Conclusions:  Findings suggest Project PENCIL’s pilot materials increase participants’ knowledge about, and positive attitudes towards, managing a CIL’s health and education, and improves their self-efficacy to perform related tasks.

Implications for research and/or practice:  CIL are a heterogeneous group with differences in illnesses, illness severity and duration, and social-psychological and physical effects. However, despite these differences, parents of all CIL share a core set of information and support needs that are well documented in the literature, as do teachers. A program like Project PENCIL can address these core needs by providing parents and teachers with the knowledge and skills to secure and implement school services to help CIL succeed socially and academically at school and preventing negative academic and psychosocial effects before they begin.