Communic-Aid

DESCRIPTION (provided by applicant): In this Phase I SBIR grant, Danya International, Inc., proposes the development and evaluation of the Communic-Aid program, a practical, innovative, and comprehensive resource for parents, group facilitators, and direct care providers to support engagement of family communication with a school-age child with a life threatening illness (LTI). Parents of children with LTI face many significant and important questions; one of these questions-should I, or should I not, talk about death with my child?-is the central concern of this proposed work. Therefore, the goal of this project is to develop and evaluate a family-centered intervention that will increase positive communication among family members about LTIs, death, and dyi ng. The proposed product will be designed as a multimedia program, including: a parent guidebook that can be used as a self directed support tool by parents or as a facilitator-led, group-based tool; a children's activity book; a video/DVD; an accompanying booklet for institutions and direct care providers; and a facilitator's guide for providers (e.g., child life specialists, pediatric nurses, psychologists, social workers) implementing the program in a group setting. During the Phase I period, the research team will complete intensive formative research through input from our partners, Content Advisors and Advisory Panel members; a needs assessment with various hospice and hospital programs; and formative research focus groups with parents. Content will be developed for the first two modules, In the Beginning and Collaborating with Medical Teams, of the parent guidebook. Outlines for the child's activity book and the provider facilitator's guide will also be developed. A feasibility study will b e conducted to determine the appropriateness and viability of the prototype. Phase II will involve the completion of content for the parent guidebook and child activity book, filming the video/DVD component, development and completion of the provider bookl et and facilitator's guide, as well as a full-scale evaluation of the Communic-Aid product to assess its effectiveness in improving family communication. Open family communication is a critical and widely recommended support mechanism for families enduring the difficulty of LTIs in children. This practical and innovative program will fill an unmet need in the pediatric hospice and palliative care field.