SBIR-STTR Award

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 dying. 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 be 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 booklet 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.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
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DESCRIPTION (provided by applicant The purpose of this Phase II Small Business Innovation Research (SBIR) proposal is to continue development and evaluation of Communic-Aid: Support for Families (""Communic-Aid""), a practical, innovative, and comprehensive resource for caregivers and direct care providers to support open family communication with a school-age child with a life-threatening illness (LTI). The complete Communic-Aid program contains a Caregiver Guidebook with supplemental audiovisual program (DVD), and a Family Activity Book. Communic- Aid will also include a Facilitator's Guide for healthcare staff to use when implementing Communic-Aid with families in a support group format. Caregivers of children with an LTI face many significant and important questions, including if, how, and when to talk to their child about their illness, upcoming treatment procedures, prognosis, or even impending death. Other concerns center around how to interact and communicate with their child's healthcare team to advocate most effectively for their child and their family. Research consistently shows that open and honest communication between family members about illness and death benefits the family of a child with LTI and improves the coping and quality of life of the dying child and his or her parents and siblings (Steele, 2002;Kreicbergs, Valdimarsdottir, Henter, &Steineck, 2004). Despite evidence supporting the benefits of open communication about the child's illness, death, and dying, very few resources exist to teach caregivers how to facilitate open and direct communication about the illness, death and dying within the family context, or to providers on how to best support this type of family communication. Communic-Aid will meet this need by supporting caregivers as they cope throughout the illness process and improving communication between caregivers and the health care team. During the Phase II project, Danya proposes to complete development of all product components, including the Family Activity Book, Audiovisual program, Facilitator's Guide, and the last 2 modules of the Caregiver Guidebook. Content will be informed by formative research conducted with caregivers, providers, and children with LTI. Once product development is complete, we will conduct a rigorous evaluation of the product components to see what effect, if any, Communic-Aid has on caregivers'willingness to use open communication techniques with the child, other family members, and the healthcare team as well as caregivers'self-efficacy in using these techniques. Providers will participate in a qualitative review of the Caregiver Guidebook to ensure that the materials are appropriate for and relevant to families and sensitive to cultural and religious diversity. The results of this evaluation will be used to make improvements to the product before , ,

Public Health Relevance:
Research consistently shows that open and honest communication between family members about illness and death benefits the family of a child with a life-threatening illness and improves the coping and quality of life of the dying child and his or her parents and siblings (Steele, 2002;Kreicbergs, Valdimarsdsttir, Onelvv, Henter, &Steineck, 2004). Despite this clear benefit to the child and family, there are currently no existing comprehensive programs to teach and support caregivers in facilitating open and direct communication about the illness, death and dying within the family context, or to teach providers how to best support this type of family communication. Communic-Aid will fill this unmet need in the pediatric hospice and palliative care field, and ultimately contribute to public health by improving the coping skills and quality of life for these children and their families.

Thesaurus Terms:
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