With advances in cancer research and treatments, patients with acute lymphoblastic leukemia (ALL) can enjoy longer lives and treatment can continue long after initial hospital admission and into the outpatient setting.1,2 Parents of children with leukemia often find themselves serving as direct caregivers for their children, an important role that may require them to receive specialized education about managing ALL. Caregivers must learn about medication administration and adherence, side effect management, and assessment of life-threatening complications requiring immediate intervention.3
However, research assessing the educational needs of families of patients with cancer is lacking. No evidence-based guidelines exist to inform appropriate educational content for parents of newly diagnosed patients with cancer before discharge, leading to lack of standardization in educational practices and topics.
In a narrative review published in the Journal of Pediatric Oncology, Gemma Aburn, BNurs, RN, of the Auckland District Health Board in New Zealand, and Merryn Gott, MA, PhD, of the University of Auckland in New Zealand, shared best practices collected from 21 studies that discussed educational methods used by pediatric nurses to educate families of patients with ALL before first discharge.
The authors concluded that effective care largely depends on clear communication, collaboration between clinicians and the patient’s family, adequate education of the patient and family, and appropriate discharge timing and planning. These principles are vital to successfully outlining a treatment plan that includes the essentials of daily care, treatment of any side effects, and management of emergency situations.
The authors suggested that discharge planning should be initiated at the early stages of diagnosis and admission and that education of the patient’s family should continue into the postdischarge setting. Clinicians should acknowledge that the patient and family will need time to assimilate to an overwhelming new diagnosis and to adjust to lifestyle changes; as a result, they may not be receptive to education regarding the patient’s disease and treatment. However, empowering the patient and family with knowledge about the prognosis, as well as managing their fears and expectations, may allow for optimal treatment outcomes.