Patient and Family Education in Pediatric Oncology: A Systematic Review

A diagnosis of cancer is an extremely stressful experience for the pediatric patient and family; yet, essential education must be delivered to the patient and family during this emotional time.  Nurses have a responsibility to provide education to patients and parents, but best methods for education have not been identified (Landier, Leonard, & Ruccione, 2013). The aim of this evidence-based review is to determine the current state of knowledge and develop recommendation statements regarding effective delivery of patient/family education with newly diagnosed pediatric oncology patients.  Six areas of interest were explored for this review, and included educational methods, timing, location, content, influencing factors, and interventions. 

            A literature search was conducted in MEDLINE, CINAHL, and The Cochrane Library databases, using key words and MeSH terms pertinent to the topic.  Searches included no publication date limits but were limited to the English language. Due to the limited results within pediatric oncology, the search was expanded to other diseases or conditions that required the parent or patient to learn new information and/or skills.  These diseases or conditions included diabetes, sickle cell disease, human immunodeficiency virus, epilepsy, hemophilia, newly placed tracheostomy or central line, chronic diseases requiring hospitalization, traumatic brain injury, traumatic injury, and premature or newborn infants.  Removal of duplicates resulted in 2779 unique articles.  Using the inclusion criteria of empirical evidence evaluating the outcome of education, knowledge level, communication technique among newly diagnosed pediatric patients, their parents, their siblings, and/or their healthcare providers, a total of 83 articles were selected for inclusion in the review.

            Preferences for educational delivery methods among patients newly diagnosed with cancer and their family included written materials, verbal discussions, audio recordings, and use of the Internet. No evidence provided a specific time period for the delivery of education; however, parents expect to receive cancer diagnosis information during the initial meeting with the oncologist but often become overwhelmed and need time to process the information (Auburn & Gott, 2014). No evidence was identified regarding the most effective or preferred location to receive education. Educational content considered important among patients with cancer and their family members ranged from cancer-specific information to psychosocial topics. Age and educational level influenced patient/family preferences regarding the amount and type of information provided (Zebrack et al., 2013). Several other factors influenced receipt of education among parents including information delivery, emotions, language barriers, relationship with healthcare providers, the child’s condition, and social issues.  Only web-based programs and structured teaching tools have been evaluated with pediatric oncology patients and their families for education delivery. 

             From this body of evidence, ten recommendation statements were developed for children newly diagnosed with cancer and their family members.  Recommendations include: (a) methods such as written, short verbal discussion, and audio recordings, should be used to provide education; (b) parents need time to process the diagnosis before teaching can begin; (c) medical information should include prognosis, etiology, procedures, treatment and side effects, and for adolescents and young adults, sexuality and fertility information; (d) psychosocial information should include adjustment, interacting and communicating with friends, impact on family members, getting back to school, and making job or career plans; (e) healthcare providers should utilize anticipatory educative content; (f) education and developmental level should be considered when delivering educational information to the pediatric oncology patient; (g) educational information should be provided by consistent healthcare providers, using vocabulary that the recipient understands, providing consistent information, and allowing time to answer questions; (h) parents’ emotional state, language barriers, cultural issues, and social issues should be considered when providing education to parents; (i) structured teaching tools should be used to provide education and discharge instructions; and (j) siblings of children newly diagnosed with cancer should receive age-appropriate, interactive education. Incorporating these recommendations into practice may enhance the quality of education delivered by healthcare providers and received by patients and families.  Optimal educational practices can improve the quality of life among patients and parents (Slone, Self, Friedman, & Heiman, 2014).