Little is understood about parents' experiences following children's moderate to severe traumatic brain injury (TBI). Using descriptive phenomenology we explored common experiences of parents whose children were diagnosed with moderate to severe TBI. Parents from across the United States (N = 42 from 37 families) participated in two semistructured interviews (~ 90 minutes and 12–15 months apart) in the first five years following children's TBI. First interviews were in person. Second interviews, done in person or by phone, facilitated updating parents' experiences and garnering their critique of the descriptive model. Parent themes were: (a) grateful to still have my child; (b) grieving for the child I knew; (c) running on nerves; and (d) grappling to get what your child and family need. Parents reported cultural barriers because of others' misunderstandings. More qualitative inquiry is needed to understand how the knowledge, attitudes, beliefs, and expectations of others (culture) influence parents' interactions and the family's adjustment and well-being.
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