examining health literacy in biorepository consents

Conditions: Pediatric; Critical Illness; Consent

Summary: previous research has shown that most parents would allow their child's leftover blood to be included in a de-identified biorepository using opt-out consent in an outpatient setting. in a pilot study to evaluate pediatric intensive care unit (picu) parents' preferences and comprehension of a written opt-in consent to include their child's sample in a biorepository, the investigators showed 19% of parents did not agree to participate in the biobank, more than the 8.7% reported in other settings. parent comprehension varied. and the investigators also noted differential enrollment by sociodemographic factors. critically ill children and their parents are vulnerable; seeking consent for non-therapeutic research in critical care requires special consideration. therefore, the goal of this study is to evaluate whether the addition of a stakeholder influenced (parent, clinical research professionals) video aided consent will improve comprehension and rates of enrollment across diverse groups in this high intensity setting.

previous research has shown that most parents would allow their child's leftover blood to be included in a de-identified biorepository using opt-out consent in an outpatient setting. in a pilot study to evaluate pediatric intensive care unit (picu) parents' preferences and comprehension of a written opt-in consent to include their child's sample in a biorepository, the investigators showed 19% of parents did not agree to participate in the biobank, more than the 8.7% reported in other settings. parent comprehension varied. and the investigators also noted differential enrollment by sociodemographic factors. critically ill children and their parents are vulnerable; seeking consent for non-therapeutic research in critical care requires special consideration. therefore, the goal of this study is to evaluate whether the addition of a stakeholder influenced (parent, clinical research professionals) video aided consent will improve comprehension and rates of enrollment across diverse groups in this high intensity setting. previous research showed that most parents would allow their child's leftover blood to be included in a de-identified biorepository using opt-out consent in an outpatient setting. critically ill children and their parents are vulnerable; seeking consent for non-therapeutic research in critical care requires special consideration. in a pilot study to evaluate pediatric intensive care unit (picu) parents' preferences and comprehension of a written opt-in consent to include their child's sample in a biorepository, the investigators showed 19% of parents did not agree to participate in the biobank, more than the 8.7% reported in other settings. parent comprehension varied; in general, parents understood the voluntary nature of participation but had limited knowledge of the purposes, risks, and benefits of biorepository research. the investigators showed in an initial single page opt-in consent low rates of comprehension. the investigators also showed differential enrollment by socioeconomic status factors. the goal of this study is to evaluate whether the addition of a stakeholder influenced (parent, clinical research professionals) video aided consent will improve comprehension and rates of enrollment across diverse groups in a pediatric biorepository. to achieve this goal, the study will occur in two phases: first, the investigators will pilot test a survey with up to 20 participants; based on the results of the pilot the investigators will amend the survey, if and as needed, and then begin a larger enrollment.

Eligibility criteria:
inclusion criteria: * parents of patients who are nearing readiness for discharge/clinically stable to participate exclusion criteria: * other languages except for english and spanish