"We Don't Know What to Do With an Adult" A Qualitative Study of Cerebral Palsy Transition Gaps.

The team contacted 40 eligible participants but completed 21 interviews with 27 participants, so the themes reflect those who took part. Participants came from one specialty adult CP clinic in a large academic health system, and many had access to adult CP specialty care, so this may not reflect adults who never reached such care or who are in less resourced settings. Only English-speaking adults and caregivers were included, so experiences of non-English-speaking families may differ. Caregiver participants were majority female, White, and employed, which may limit transferability of caregiver views. The study is qualitative and descriptive. It reports experiences and does not test whether transition preparation, coordination, or lifespan care changes function, health, or service use. Adults were aged 18 to 40 and recruited from a clinic started April 2022, so findings focus on relatively recent transitions in early adulthood. Some adults were represented by caregivers or interviewed in dyads, so the adult-only perspective may be less complete.

Do not read this as evidence that a transition program works. The study reports what adults with CP and caregivers said about gaps and preparation. It did not test any intervention or measure health, function, or care outcomes.