Feasibility and Acceptability of a Telephone-Based Intervention for Hispanic Children to Promote Treatment Adherence After Traumatic Brain Injury: A Pilot Study.

OBJECTIVE: To assess the feasibility and acceptability of a telephone-based education and navigation program for Hispanic parents of children hospitalized with traumatic brain injury (TBI). SETTING: Level I trauma hospital and pediatric inpatient rehabilitation unit in the Northwestern United States. PARTICIPANTS: Fourteen Hispanic parent-child dyads. Parents were 85% female, with a mean age of 35 years. Children were 58% male, with a mean age of 9.7 years, and had been hospitalized for complicated mild/moderate (n = 5) or severe (n = 9) TBI. DESIGN: Pilot prospective cohort design. MAIN MEASURES: Feasibility measures include recruitment, retention, and intervention adherence rates. Acceptability of intervention was measured by parents' use of educational materials and satisfaction with navigation program. We also evaluated study processes, including completion of baseline, 3, 6, and 12 months functional assessments of the child; assessment of parental health literacy and self-efficacy; and adherence to follow-up rehabilitation appointments. RESULTS: Eighty-two percent of approached potential participants were recruited into the study. One hundred percent of participants completed the intervention, and 85% had 1-year follow-up. Intervention acceptability was high: 90% reported satisfaction with navigator, and 92% used the educational manual. Assessments demonstrated significant improvement in parents' TBI caregiving and community self-efficacy; 92% attendance to follow-up rehabilitation appointments; and improvement in the child's functional measures, except communication skills. CONCLUSIONS: Findings support feasibility and acceptability of a culturally relevant program to facilitate transitions of care for Hispanic children with TBI. A future randomized trial is warranted to determine the efficacy of the intervention on long-term treatment adherence and the child's post-TBI function.

Transitions to Outpatient Care After Traumatic Brain Injury for Hispanic Children.

BACKGROUND AND OBJECTIVES: Rehabilitation after a child's traumatic brain injury (TBI) occurs in hospital, community, and school settings, requiring coordination of care and advocacy by parents. Our objective was to explore Hispanic parents' experiences during child's transitions of care after TBI. METHODS: We conducted this qualitative study using semistructured interviews. We used a convenient sample of Hispanic parents of children hospitalized for a TBI in a single level I trauma center. Thematic content analysis using iterative deductive coding and triangulation with clinical data was conducted to identify barriers and facilitators for transitions of care. RESULTS: Fifteen mothers, mostly from rural areas and with limited English proficiency, participated in the study. Obtaining outpatient rehabilitation was difficult. Barriers included lack of therapists and clinical providers close to home, worsened by insufficient transportation and other support resources; poor understanding of child's illness and treatments; and suboptimal communication with clinicians and school administrators. Facilitators included interpreter use, availability of Spanish written information, and receipt of inpatient rehabilitation. Parents of patients discharged to inpatient rehabilitation reported that observing therapies, receiving school discharge plans by hospital-teachers, and coordination of care were facilitators to access outpatient treatments and to support school return. Parents of children discharged from the hospital from acute care reported need of legal services to obtain school services. CONCLUSIONS: Hispanic parents, especially those with limited English proficiency, can face significant challenges accessing TBI outpatient rehabilitation and school resources for their children. Although barriers are multifactorial, efforts to improve communication, parent's TBI education, and care coordination during transitions of care may facilitate a child's reintegration to the community and school.

Strategies to Address Unmet Needs and Facilitate Return to Learn Guideline Adoption Following Concussion.

BACKGROUND: Many students do not receive return to learn (RTL) services upon return to academics following a concussion. METHODS: Using a mixed-methods approach, we conducted a survey of RTL practices and experiences in Washington State schools between January 2015 and June 2015. We then held a statewide summit of RTL stakeholders and used a modified Delphi process to develop a consensus-based RTL implementation model and process. RESULTS: Survey participants included 83 educators, 57 school nurses, 14 administrators, and 30 parents, representing 144 schools in rural and urban areas. Unmet need domains and recommendations identified were (1) a current lack of school policies; (2) barriers to providing or receiving accommodations; (3) wide variability in communication patterns; and (4) recommendations shared by all stakeholder groups (including desire for readily available best practices, development of a formal school RTL policy for easy adoption and more training). Using stakeholder input from RTL summit participants and survey responses, we developed an RTL implementation model and checklist for RTL guideline adoption. CONCLUSIONS: Washington State children have unmet needs upon returning to public schools after concussion. The student-centered RTL model and checklist for implementing RTL guidelines can help schools provide timely RTL services following concussion.

Availability of Outpatient Rehabilitation Services for Children After Traumatic Brain Injury: Differences by Language and Insurance Status.

OBJECTIVE: The objective of this study was to explore associations between English proficiency, insurance status, outpatient rehabilitation service availability, and travel time for children with traumatic brain injury. DESIGN: The authors used an ecologic cross-sectional design. Data were analyzed from a cohort of 82 children with moderate to severe traumatic brain injury and rehabilitation providers in Washington State. Main measures included availability and travel time to services. RESULTS: Less than 20% of providers accepted children with Medicaid and provided language interpretation. Mental health services were most limited. Adjusted for median household income, multilingual service availability was lowest in counties with greater language diversity; for every 10% increase in persons older than 5 yrs speaking a language other than English at home, there was a 34% decrease in availability of multilingual services (prevalence ratio, 0.66; 95% confidence interval, 0.48-0.90). Adjusted for education and Medicaid status, children from Spanish-speaking families had significantly longer travel times to services (mean, 16 additional minutes to mental health; 9 to other therapies). CONCLUSIONS: Children in households with limited English proficiency and Medicaid faced significant barriers in availability and proximity of outpatient rehabilitation services. Innovative service strategies are needed to equitably improve availability of rehabilitation for children with traumatic brain injury. Similar studies in other regions will inform one's understanding of the scope of these disparities.

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

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 used. SETTING: Two level 1 trauma centers. PARTICIPANTS: Fifteen 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. 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 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.