Family members play an important and varied role in a patient's health care experience, ranging from emotional support to surrogate health care decision making. The family role can be substantial in the intensive care unit setting, as the patients rely upon family members to make health care decisions for them. The core components of patient- and family-centered care include information sharing, a welcoming environment, respect for individual values and needs, comfort and support, and providing a helpful framework for developing a productive partnership with family members. Involving family members in daily operations and providing services that make it easier for family members to participate in the care process result in the best possible care for their loved one. Including the family perspective in quality improvement initiatives better ensures that any changes made will result in better care for future patients and family members.

Objectives This 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. Design Qualitative methods with semi-structured interviews were utilized. Setting Two level 1 trauma centers. Participants Fifteen mothers of children who had an acute hospital stay after TBI 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. Interventions None Measurements and Main Results Content 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. Conclusions This 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 TBI, 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.

Qualitative data from HCAHPS helped identify major target areas for burn center performance improvement. Analysis of HCAHPS direct patient feedback is useful in process improvement, whereas numerical data alone do not provide sufficient actionable information.

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