• Megan Moore, Gabrielle Robinson, Richard Mink, Kimberly Hudson, Danae Dotolo, Tracy Gooding, Alma Ramirez, Douglas Zatzick, Jessica Giordano, Deborah Crawley, and Monica S Vavilala.
• 1Harborview Injury Prevention and Research Center, University of Washington, Seattle, WA. 2School of Social Work, University of Washington, Seattle, WA. 3Department of Anesthesiology and Pain Medicine, University of Washington, Seattle, WA. 4Harbor-UCLA Medical Center, Torrance, CA. 5Los Angeles BioMedical Research Institute, Torrance, CA. 6Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA. 7Brain Injury Alliance of Washington, Seattle, WA.
• Pediatr Crit Care Me. 2015 Oct 1; 16 (8): 758765758-65.

ObjectivesThis study examined the family experience of critical care after pediatric traumatic brain injury in order to develop a model of specific factors associated with family-centered care.DesignQualitative methods with semi-structured interviews were used.SettingTwo level 1 trauma centers.ParticipantsFifteen mothers of children who had an acute hospital stay after traumatic brain injury within the last 5 years were interviewed about their experience of critical care and discharge planning. Participants who were primarily English, Spanish, or Cantonese speaking were included.InterventionsNone.Measurements And Main ResultsContent analysis was used to code the transcribed interviews and develop the family-centered care model. Three major themes emerged: 1) thorough, timely, compassionate communication, 2) capacity building for families, providers, and facilities, and 3) coordination of care transitions. Participants reported valuing detailed, frequent communication that set realistic expectations and prepared them for decision making and outcomes. Areas for capacity building included strategies to increase provider cultural humility, parent participation in care, and institutional flexibility. Coordinated care transitions, including continuity of information and maintenance of partnerships with families and care teams, were highlighted. Participants who were not primarily English speaking reported particular difficulty with communication, cultural understanding, and coordinated transitions.ConclusionsThis study presents a family-centered traumatic brain injury care model based on family perspectives. In addition to communication and coordination strategies, the model offers methods to address cultural and structural barriers to meeting the needs of non-English-speaking families. Given the stress experienced by families of children with traumatic brain injury, careful consideration of the model themes identified here may assist in improving overall quality of care to families of hospitalized children with traumatic brain injury.

26 keywords...

hide…