Thrown Into a New WorldI used to live, what many would call, a normal life with 2 healthy sons and working full time as an information technology consultant. Six years ago, that life changed dramatically from 1 day to the next, when my youngest son, then aged 7 years, went from being an active boy to becoming totally paralyzed from his chest down. One Saturday evening, he started complaining of back pain. His right leg became numb and did not "wake-up" when my husband and I asked him to walk around the room. We went to the hospital and after a couple of hours in the emergency room, the staff told us to stay the night. The next morning, my son could no longer move his leg or empty his bladder. We panicked. Then everything happened very fast. After a magnetic resonance imaging examination, a neurologist told us our son had a cavernoma, a vascular malformation, in his spinal cord at the C4-6 level. He was moved to the intensive care unit and was surrounded by staff putting needles in him and connecting devices to him.My son was now completely paralyzed from his chest down and he could not feel or move anything below that level. He could not move his hands and had a hard time breathing. My husband and I struggled to figure out how to relieve his pain and fear. When the doctors told us that our son had a cavernoma, we thought he could be treated and cured. Three days later, we were taken to a room full of doctors and told our son had a permanent spinal cord injury (SCI) and that his legs would never support him again. I asked about his hands but got no reply. I remember how my legs started to shake uncontrollably trying to understand what all the people in the room were saying and what that meant for my son's life. I left that meeting feeling as if I was falling into a big black hole. I remember repeating a mantra in my head. "I must eat so I can be there for my son." "I must sleep/get dressed so I can be there for my son." "To be there for my son"-was the only thing that mattered.

Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using closestructured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion:The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.