A Researcher's Lessons from a Child in the Hospital: Assents, Consents, & Gatekeepers”
Background: Over 3 million children are hospitalized every year (1). Hospitalization is reserved for increasingly complex care of the sickest children, and accounts for 10 billion dollars of annual hospital costs (1,2). Since the 1960’s, it has been well known that hospitalization can be traumatic for children (3, 4, 5, 6). Distress from fear, uncertainty, pain and discomfort can affect a child’s healing, behavior and health outcomes (7, 8, 9). Although the psychosocial impact of hospitalization is evident, it has not been fully explored from a child’s perspective. Child assent, parental consent and respect for gatekeepers are important elements when gaining a child’s perspective in a research context (10, 11). Understanding of a child’s way of thinking is critical to addressing these issues (11, 12). Prior research on child assent addresses a child’s decision-making ability with little emphasis on practical advice and tools for gaining assent (13, 14). Consequently, there is a lack of research offering assent methods appropriate for a child’s developmental, social and emotional capabilities.
Methods: Thirty child participants, ages 7-9, were interviewed in a large Midwest children's hospital, using a child-centered ‘draw and tell’ technique (15, 16) to elicit their perceptions of stress. A qualitative interpretive description framework was applied (17) to explore stress through a child’s voice (18). A pictorial assent tool was designed and piloted to address ethically sound and developmentally appropriate issues of child assent in research. A pictorial script (19) was utilized to help children visualize and conceive the concepts of research, confidentiality, privacy, data management, and refusal/withdrawal from the study (20, 21).
Results: Five important messages from hospitalized children were communicated to professional caregivers: a) children express their stress through descriptions of fears, worries, discomforts and primarily things that make them ‘sad’; b) children want to be listened to, as they believe they have something important to say; c) children want to know what is expected and be informed of what they need to do; d) relief of stress is going home; and e) children tell about simple things health care providers can do to help them during hospitalization (i.e. talking to them instead of just their parents.) The use of the new assent tool elicited comfort, safety, and caring prompted from the child’s engagement with storytelling. Lessons for the researcher about assent, consent and gatekeepers included: a) instant rapport and trust; b) enhanced child control and choice; c) enhanced parental knowledge and consent; and d) gatekeeper approval, with less unanticipated events due to affirmative informed assent.
Implications: Discovering the meaning of stress from a child’s view launches a trajectory of exploration of relevant remedies for psychosocial trauma for hospitalized children. Further study on the pictorial assent tool regarding comprehension, recruitment timeframe, and child/parent satisfaction is warranted.