Developing a Family-Centered Care Model for Critical Care After Pediatric Traumatic Brain Injury*

Abstract

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.

Targeted areas for improving health literacy after traumatic brain injury

“…Two major themes related to the caregiver experience of communication were also identified: 1) confusion and dissatisfaction and 2) lack of preparation for caregiving upon patient discharge. We expanded on the previously developed TBI Family-Centered Care Model (9) to provide specific intervention targets for improving health communication, including health information, caregiver capacity building, and health literacy after trauma.…”

“…Synthesizing the recommendations from participants with an integrated model of health literacy and concepts from work in family-centered care for injured children (9,18), we expanded the Family-Centered Care model in trauma care (See Figure 1). As has been previously posited (18), the pathway to health literacy and positive health outcomes is influenced by provider, patient and family characteristics and situational characteristics such as socio-economic status.…”

“…The few available studies have found large gaps in post-discharge health literacy (5), limited comprehension of injuries, care and postoperative instructions for trauma patients (6), and patient perceptions of receiving inadequate information (7,8). In one small study of children with traumatic brain injury (TBI), parents reported communication difficulty in the acute care setting and with transitions after trauma, especially when families had limited English proficiency (9). Utilizing data from interviews with racially and linguistically diverse parents of children hospitalized for TBI, a model of family-centered care after TBI was developed that highlights the importance of three core areas: communication, capacity building and coordination (9).…”

“…In one small study of children with traumatic brain injury (TBI), parents reported communication difficulty in the acute care setting and with transitions after trauma, especially when families had limited English proficiency (9). Utilizing data from interviews with racially and linguistically diverse parents of children hospitalized for TBI, a model of family-centered care after TBI was developed that highlights the importance of three core areas: communication, capacity building and coordination (9). Families reported they valued detailed and frequent communication that prepared them for their child’s outcome and care needs.…”

Emotional Experiences of Obese Women with Adequate Gestational Weight Variation: A Qualitative Study

“…The technique of Content Analysis was used to handle the data, consisting of a set of analysis techniques that allows the replication and validation of inferences about research data within a scientific context [ 34 ], [ 35 ], [ 36 ], [ 37 ], [ 38 ], [ 39 ], [ 40 ], [ 41 ], [ 42 ]. An inductive process was adopted in which the categories and the explanatory hypotheses were formed, based on the data collected relating to the aims of the research.…”