Researching the Experiences of Children with Cancer: Considerations for Practice

Abstract

Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as “doubly vulnerable” research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in designing and conducting research with this population; however, these considerations have not been adequately addressed in pediatric healthcare literature. Therefore, the purpose of this review is to describe the research preferences and experiences of children and adolescents with cancer to identify techniques for supporting this population as research participants. By incorporating developmentally appropriate, context-specific, and child-centered adjustments, researchers can help children and adolescents with cancer effectively and meaningfully describe their illness experiences while also developing a positive outlook on future research participation.

Improving comprehension, recall and attention using multimedia‐informed assent among pediatric oncology patients: A comparative randomized controlled trial

“…1,2 Given this limited decisional capacity, specific protections should be in place to safeguard the rights and well-being of these individuals when they are considered for recruitment in research such as careful consideration from researchers and research ethics committees with regards to risk/benefit assessment, allowing no more than minimal risk for procedures or interventions that offer no potential direct individual benefit, and the requirement of permission to unforeseen risks. 3 Therefore, we decided to select a pediatric oncol-ogy population as our priority for this study. Although children cannot give legally valid informed consent, they may be able to give assent.…”

“…In addition, children diagnosed with cancers are more vulnerable than others for several reasons, including the background diagnosis of serious illness or sometimes incurable disease. Furthermore, this specific patient population tends to be more involved in research or clinical trials involving invasive procedures or cytotoxic agents with unforeseen risks 3 . Therefore, we decided to select a pediatric oncology population as our priority for this study.…”

“…1,2 In addition to their immaturity, children diagnosed with cancer are sometimes vulnerable due to their limited physical strength from severity of disease and intensive treatment. 3 Advancement of cancer treatment and supportive care has improved overall outcomes of childhood cancer over the past decades. 4 Pediatric oncology research is essential and should be prioritized because most medications currently used for those children with cancer are prescribed off label.…”

“…The impairment in decision capacity of children vastly affects their capability to protect their own interests when they participate in a research study 1,2 . In addition to their immaturity, children diagnosed with cancer are sometimes vulnerable due to their limited physical strength from severity of disease and intensive treatment 3 . Advancement of cancer treatment and supportive care has improved overall outcomes of childhood cancer over the past decades 4 .…”

Exploring different stakeholder’s perspectives on ward rounds in paediatric oncology: A qualitative study

“…While family-centred rounds have become standard practice on many paediatric wards, they also require special communication skills (7). In paediatric oncology, the burden of a cancer diagnosis and the long-lasting therapy process place signi cant emotional stress on families, which always has to be considered during WR (8,9). Despite being a clinical core routine in every hospital ward, there is not "the one" de nition of a WR (10) and research on WR is limited.…”