Primary objective: Little is known about life after traumatic brain injury (TBI) from the child's perspective.
Research design: This descriptive phenomenological investigation explored themes of children's experiences following moderate-to-severe TBI.
Inclusion criteria: (1) 6-18 years of age at injury; (2) moderate-to-severe TBI; (3) ≤3 years since injury; and (4) English speaking and could participate in an interview. Children participated (n = 39) in two interviews at least 1 year apart. A preliminary model was developed and shared for participants' input.
Main outcomes and results: Six themes emerged: (1) it is like waking up in a bad dream; (2) I thought going home would get me back to my old life, but it did not; (3) everything is such hard work; (4) you feel like you will never be like the person you were before; (5) it is not all bad; and (6) some people get it, but many people do not.
Conclusions: Social support was important to how children adjusted to changes or losses. Most children did adjust to functional changes by second interviews. Children had a more difficult time adjusting to how others defined them and limited their possibilities for a meaningful life.