Embracing the experiential knowledge of pediatric stroke survivors

ORC I D Peter Rosenbaum https://orcid.org/0000-0001-6751-5613 R E F E R E N C E S 1. Rosenbaum PL, Russell DJ, Cadman DT, et al. Issues in measuring change in motor function in children with cerebral palsy: a special communication. Phys Ther 1990; 70: 125– 31. 2. Fayed N, de Camargo OK, Kerr E, et al. Generic patientreported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol 2012; 54: 1085– 95. 3. Verheyen K, Wyers L, Lambrecht E, et al. Functional mobility in children and young adults with Dravet syndrome. Dev Med Child Neurol 2023; 65: 1343– 56. 4. Towns M, Rosenbaum P, Palisano R, Wright FV. Should the Gross Motor Function Classification System be used in children who do not have cerebral palsy? Dev Med Child Neurol 2018; 60: 147– 54.

Experiencing a stroke in childhood or adolescence can alter the course of a life and, in particular, affect developmental trajectories for the affected children and their families. Pediatric stroke survivors share the impairments of their adult counterparts, as well as the sense of grief and loss that occur with disability acquisition but have the unique challenge of negotiating these impairments while returning to the ever-important task of growing up. Listening and learning from the voices of young stroke survivors who have experiential knowledge is imperative to improving care for this population.
The qualitative study by Champigny et al. is an important step in better characterizing the experiences of childhood, adolescent, and young adult stroke survivors. 1 The study gathered data from 14 participants aged 13 to 25 years old with a broad range of ages at stroke onset (9-16 years old). They were interviewed between 9 months and 14 years after their stroke. Although one young person with experiential knowledge provided feedback on the interview script, there was no further youth participation in the scientific process, including interview script generation or thematic analysis. 1 In qualitative research, the data gathered is primarily based on the questions asked. Healthcare research has implemented patient engagement as a strategy to improve its relevance and value. In this study population, who are capable of participating in the research process, a more collaborative approach is imperative for meaningful patient engagement.
Young people in this study describe a variety of losses extending beyond those associated with the newfound impairments, including a loss of identity, hobbies, memories, and time as well as a realization of future losses (not being able to pursue certain careers, obtain a driver's license, etc.). 1 This was compounded by a feeling of being 'left behind' by their peers. During the acute phase of rehabilitation, there are many goals to be achieved and 'boxes to tick' in order to return home, go back to school, and resume independent activities. When the acute rehabilitation phase finishes, these young people must be prepared for the realities they will face on return to their lives outside the hospital, have strong community supports, and have other activities to fill the void as described by the study participants. 1 Depression and anxiety are more common in pediatric stroke survivors than in age-matched populations. 2 Understanding these losses, and trajectories of emotional and social recovery following pediatric stroke, can help us as providers better address these mental health challenges experienced by young stroke survivors. Recognizing that much of this knowledge exists within the population being studied, should help better direct research and clinical care addressing unique health disparities faced by this population.
The descriptors of keys to recovery included intrinsic features such as determination and extrinsic factors such as school and family support. 1 An environmental factor that was highlighted is the importance of community, whether that be through parasport, advocacy, or peer programming. For young people with permanent neurological sequelae, having peers, mentors, and role models who share similar lived experiences is essential to ease challenges associated with growing up with a disability. Disabled identity formation, and involvement in the disability community more broadly, aids with the development of a positive self-identity. [3][4][5] Supporting pediatric stroke survivors in their exploration of disability identity and engagement in this community can be healing, as the participants described, and can be a form of allyship by rehabilitation professionals. 3 Learning from those with experiential knowledge through qualitative research in collaboration with patient-partners complements the existing and advancing quantitative research in this unique group, ultimately shaping the care of pediatric stroke survivors.

DATA AVA I L A BI L I T Y S TAT E M E N T Not required.
ORC I D Julia Ersilia Hanes https://orcid. org/0000-0001-8856-8642