The goal of this clinical trial is to measure the effects of using a storybook versus standard child life intervention with parents of children newly diagnosed with leukemia on parental stress.
The main questions it aims to answer are:
* What effect will the storybook have on parent/legal guardian stress at three timepoints: baseline, discharge, and follow up? * Will this storybook impact parent/legal guardian comfort levels and improve their child's understanding?
Participants will be asked to complete surveys at three timepoints, prior to and following child life intervention and about 3.5 months later. During child life interventions, participants will receive resources and support to explain leukemia to their school aged, 3-16-year-old, child (patient or sibling).
Researchers will compare Intervention and Control Groups to see if parental stress is lower in those who received the storybook in addition to the standard child life intervention versus the standard child life intervention alone.
Parent/Legal Guardian of a child a. who is school-aged (3-16 years old) with a new leukemia diagnosis b. with a new leukemia diagnosis who is not school-aged but is a sibling of a school-aged child (<3 years or >16 years old).
Parent/legal guardian is able to speak, read, and write English or Spanish, and give informed consent 3. Parent/legal guardian is over 18 years of age.
Their school-aged children have developmental or cognitive delays, and/or other chronic illnesses.
Their school-aged child does not give assent to participate.
Parallel
"Who is Luke Eemia?" Storybook
BehavioralParents in this group will receive the "Who is Luke Eemia?" storybook, and will receive guidance from the child life specialist on how to utilize the storybook with their school-aged child. Parents in this study will complete surveys at three timepoints, these surveys include: (1) Comfort Survey (prior to child life intervention), (2) Discharge Survey and (3) Storybook Assessment survey to review the parent's impression of the storybook intervention tool (at the time of discharge, or about 1 week following the child life intervention), and the (4) Parenting Stress Index -4-Short Form (at baseline, at the time of the discharge survey, and about 3.5 months later).
Parental Stress, prior to and following child life intervention
All participating parents/legal guardians will be given the Parenting Stress Index -4 Short Form \[PSI™-4-SF\] at baseline (before child life intervention), discharge (about 1 week following the child life intervention for extended admissions), and about 3.5 months after the initial survey. The PSI™-4-SF form is a 36-item scale, available in English and Spanish. The form is broken into two domains (child and parent). The questions in the Parent Domain look at identifying sources of stress.
Parent's Comfort Explaining Aspects of Leukemia Diagnosis
All parents/legal guardians will be given the Comfort Survey to assess parent comfort levels and parent perception of their child's understanding of the leukemia diagnosis prior to receiving the child life intervention. The Comfort Survey is a non-standardized survey, designed by the PI to elicit information about parental comfort explaining the diagnosis at baseline
Parental Impression of the Storybook Tool using a Likert scale (1-week post baseline).
Parents/legal guardians randomized to the Intervention Group will complete the Storybook Assessment survey. The Storybook Assessment will measure the parent's overall impression of the educational storybook intervention tool.
Parent perception of the child's stress
All participating parents/legal guardians will be given the PSI™-4-SF at baseline (before child life intervention), discharge (about 1 week following the child life intervention for extended admissions), and about 3.5 months after the initial survey. The PSI™-4-SF form is a 36-item scale, available in English and Spanish. The form is broken into two domains (child and parent). The Child Domain will explore questions around the parent's perception of the child's stress.
Parent comfort, readiness, and importance, explaining aspects of the diagnosis at the discharge (1-week post baseline).
All parents/legal guardians will be given the Discharge Survey to assess the parent's perceived importance, comfort, and readiness around discussing aspects of the diagnosis with their child at the time of discharge (about 1 week following the child life intervention). The Discharge Survey will elicit information about their comfort and readiness to explain the diagnosis following child life intervention.
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