Photo-Narrative Pilot RCT Study
Photo-Narrative Pilot RCT Study
What is the goal of the study?
What is our study doing? We are developing a photo-narrative tool designed to strengthen therapeutic relationships between parents of children with severe neurological impairment and their child's clinicians. What is the goal of this study? We would like to incorporate photo narratives into the routine care of patients in the hospital by asking family caregivers to complete a photo-narrative tool that provides a more holistic view of who their child is outside of the hospital. The photo-narrative tool asks family caregivers to respond to prompts such as what and who is important to their child, their child's likes/dislikes, and how their child's health is at baseline. This tool would then be displayed in the patient's room for clinical team members to engage with families on.
Who can participate in the study?
Inclusion criteria for each subject population (e.g., patients, parents, providers): Patient inclusion criteria will include: 1) ages 3 months-25 years; 2) SNI (including congenital/chromosomal, chronic central nervous system static or progressive conditions, or child >6 months after severe traumatic brain injury; 3) admitted to the PICU at Seattle Children’s and with medical team permission to approach; 4) expected length of stay >1 week; 5) life expectancy >4 weeks; and 6) previous discharge home. Parent/LAR inclusion criteria will include: 1) parent/legal guardian; 2) English and/or Spanish speaking (most common languages spoken at SCH making up 95% of patients and families); and 3) >18 years of age. Incidental subjects via photos shared by the patient’s family. Clinician Inclusion Criteria: Clinicians will be licensed physicians, fellows, residents, advanced practice nurse practitioners, nurses, or respiratory therapists working in the PICU at Seattle Children’s.