Table 1.

Parents' Four Major Themes and Subthemes of Experiences

Four Major Themes and Subthemes	Inductively Derived Definitions
Grateful to Still Have My Child	Parents focused on any positive signs to get through what was perceived as a threatening situation.
They are alive	Parents focused on the child still being alive as positive motivator.
Seeing glimpses of the child I knew	Parents focused on indicators of child's old self as positive motivators.
Grieving For the Child I Knew	Parents grieved actual or potential changes in their child, but needed time to process and adjust.
I didn't know what to expect	Parents have no models or experience to go by to understand coma, TBI, treatments, or recovery possibilities.
Longing for the child I knew	Parents described the grieving process they experienced because of actual or anticipated changes in their child. While grieving, however, they were also moving forward.
Adjusting my expectations of my child	Parents could transition and accept the circumstances, but needed support and time.
Running on Nerves	Parents' described their physiologic, psychological, and emotional responses to their child's injuries and the new demands placed on their family.
Going on autopilot	Parents' described their physiologic and psychological response to their child's life being threatened.
They thought I knew what they meant	Providers often used language parents did not understand, and assumed parents had prior knowledge of the meaning of having a TBI.
Using all of your resources	Parents often needed more information than they were getting and needed to know that others were considering their family; otherwise, parents searched elsewhere their information or ceased asking for help.
You have to keep pressing those helping you	Others' attitudes about TBI were the hardest to change, but parents had to advocate for their child.
You need a deeper level of support than many can give	Some people tried to be supportive, but they typically could not endure along with the parents.
Others in the community do not understand about TBI	Parents had to teach the community about TBI, or their child and family suffered the consequences.
Grappling to Get What Your Child and Family Need	Parents' experienced cultural barriers when attempting to get what their child and family needed.
You cannot give up on your child	Parents felt they have to be the ones to fight to preserve opportunities for the child.
At odds with others	The differing factors that parents and some others perceived influenced their child's outcome and future opportunities. Parents perceived that at times these differing beliefs also influenced how they were treated.
Working with those who care	Working with people that don't “get it” took too much energy, so parents gravitated to those who displayed caring and understanding.
Architect of the positive for your child	Parents attempted to create and maintain healing social environments for their children.
What about the rest of my family's needs	The family was affected by child's TBI, but this was typically not addressed in acute care or social policies.
Searching for a community	Parents searched for other families (in support groups) who would understand, but they were typically not available for children with TBI.