The Use of Formative Evaluation Methods in the Development of Patient/Family Educational Materials

Understanding Effective Delivery of Patient and Family Education in Pediatric Oncology: A Systematic Review From the Children’s Oncology Group

“…Limited information is available on the use of the Internet for education, with mixed findings. One study reported 98% of family caregivers used the Internet for cancer related information when their child was initially diagnosed (Lewis, Gundwardena, & Saadawi, 2005), while another study found only 17% of parents of Aburn, 2014;Burklow, 1988;Eden, 1994;Flury, 2011;Giacalone, 2005;Matutina, 2010 Information sheets Booklets Literature from external agencies Verbal Discussion with health care providers Aburn, 2014;Flury, 2011;Giacalone, 2005;Levenson, 1982 Informal discussion with other parents Patient-to-patient discussion Internet Search engines, such as Yahoo and Google Lewis, 2005;Aburn, 2014;Giacalone, 2005 American Cancer Society Video Taped diagnostic discussions Eden, 1994 children newly diagnosed with cancer used the Internet (Aburn & Gott, 2014). Among AYAs with cancer, 23% used the Internet as a source of information (Giacalone et al, 2005).…”

“…Several studies described that children and adolescents with cancer wanted to receive more information (Cavusoglu, 2000;Coates & Ryan, 1996;Freeman et al, 2003;Giacalone et al, 2005;Zebrack et al, 2013), but they were often unaware of what questions to ask (Palmer, Mitchell, Thompson, & Sexton, 2007;Sparapani, Jacob, & Nascimento, 2015). Giacalone, 2005;Zebrack, 2013;Palmer, 2007 References (first author, year): Decker, 2004;Burklow, 1988;Derdiarian, 1987;Giacalone, 2005 Impact of cancer diagnosis on the family Recognizing problems Medical dictionary Where to get answers for questions References (first author, year): Greenberg, 1984;Pyke-Grimm, 1999;Jackson, 2007;Flury, 2011;Sigurdardottir, 2014;Aburn, 2011;Hummelinck, 2006 While parents of children newly diagnosed with cancer likewise desired disease-specific as well as psychosocial information, several studies reported parents also want content related to practical or day-to-day management of their child's cancer (Aburn & Gott, 2011;Derdiarian, 1987;Flury et al, 2011;Hummelinck & Pollock, 2006;Sigurdardottir, Svavarsdottir, Rayens, & Gokun, 2014). A summary of content requested by parents is listed in Table 4.…”

“…Educational delivery methods among patients newly diagnosed with cancer and their parents and siblings included written materials, verbal discussions, audio recordings, and the Internet (Table 2). Parents and siblings of children newly diagnosed with cancer reported written information as very helpful at the initial diagnosis and during discharge teaching (Aburn & Gott, 2014; Eden, Black, MacKinlay, & Emery, 1994; Flury, Caflisch, Ullmann-Bremi, & Spichiger, 2011; Matutina, 2010) because it provided information they were afraid to ask (Burklow et al, 1988). Parents of premature newborns and parents of children with diabetes, epilepsy, and other chronic illnesses supported these findings (Brett, Staniszewska, Newburn, Jones, & Taylor, 2011; Broedsgaard & Wagner, 2005; Hall-Patch et al, 2010; Mahat, Scoloveno, & Barnette Donnelly, 2007; Sawyer & Gazner, 2004; Woodward, Dawes, Dolan, & Wallymahmed, 2006).…”

“…Siblings worried about developing cancer like the ill child and wanted information on the diagnosis, etiology, and prognosis (Martinson, Gillis, Coughlin Colazzo, Freeman, & Bossert, 1990). When siblings were questioned about a new educational booklet, they described the book as useful, especially the content regarding curing cancer, learning about cancer, feelings related to cancer, and the glossary of terms (Burklow et al, 1988).…”