Assistant Professor Cecilia I. Roscigno, RN PhD CNRN, of the UNC School of Nursing, presents a new seminar on her novel research into children’s TBI entitled “Actively Listening to Children and Parents of Moderate to Severe Traumatic Brain Injury: Stepping Back to Move Forward.” You can find the video on YouTube.
Children’s moderate to severe traumatic brain injury (TBI) continues to be the leading cause of mortality and morbidity amongst children in the United States. The chronic and heterogeneous effects of TBI on a child or young adult are an important long-term factor affecting the family’s functioning and well-being. Yet, limited research is available that also evaluates what factors within the family’s social environments are perceived to affect the family’s emotional adjustment, recovery, community reintegration, and well-being post injury. Children and their parents can both affect and be affected by the nested and multi-layered social environments, which they live and interact within (their extended family, friends, healthcare system, school, church, neighborhood, parent’s workplace, community, and the culture).
Cecelia’s research program first began by acknowledging that the families who experience children’s TBI have important insights that can only be gained through their lived experiences. She chose a qualitative methodology, descriptive phenomenology, which positioned the family’s expertise in the forefront of clinicians’ or researchers’ expertise. The experiences of these families were collected by interviewing children with moderate to severe TBI (N = 39) and their parent(s) (N = 42) from across the United States in two separate interviews each.
Cecelia has been using novel qualitative research approaches to uncover social and cultural factors that are also perceived to shape the family’s experiences and meanings. Her research has highlighted key points in time where community providers can improve the information and affective support that is provided to families such as: a) the culture of early acute care information-sharing, decision-making, and prognostic discussions; b) relevant informational support when the family is returning to home; and c) assistance for school reintegration and the child’s long-term individualized learning needs and social support.
These research findings support the notion of expanding the limited lens from which family research following TBI has been focused (how the child’s impairments affect the family or how the family’s parenting or coping affects the child). She is now advocating for the inclusion of broader social factors beyond the child and family in future research because these social factors also influence the family’s experiences and meaning. She is also advocating for a family resiliency lens in future research and interventions, so that providers, policy makers, and researchers can build upon the strengths of each family. Cecelia is currently proposing a research study to conduct a mixed-method mixed research synthesis of the published research literature evaluating the intersection of children’s TBI on the family. Her long-term goal is to identify important intervention strategies that will support families following children’s TBI and be relevant to their immediate and long-term needs.