"We do it all": A qualitative exploration of the caregiver role for young adults with cerebral palsy

Cristina A Sarmiento; Chloe Glaros; Jessica Solomon Sanders; Jordan M Wyrwa; Brooke Dorsey Holliman; Lisa A Brenner

doi:10.1016/j.hctj.2023.100039

"We do it all": A qualitative exploration of the caregiver role for young adults with cerebral palsy

Health Care Transit. 2023 Dec 27:2:100039. doi: 10.1016/j.hctj.2023.100039. eCollection 2024.

Authors

Cristina A Sarmiento^{1

2}, Chloe Glaros^{3

2}, Jessica Solomon Sanders^{4

2}, Jordan M Wyrwa^{1

2}, Brooke Dorsey Holliman^{3

4

2}, Lisa A Brenner^{1

5

6

2}

Affiliations

¹ Department of Physical Medicine and Rehabilitation, Division of Pediatric Rehabilitation Medicine, University of Colorado Anschutz School of Medicine, 13123 East 16th Avenue, Box 285, Aurora, CO 80045, USA.
² Departments of Psychiatry and Neurology, University of Colorado Anschutz School of Medicine, 12631 E 17th Avenue, Aurora, CO 80045, USA.
³ Adult and Child Center for Outcomes Research and Delivery Science, University of Colorado Anschutz School of Medicine, 1890 North Revere Court, Mailstop F443, Aurora, CO 80045, USA.
⁴ Department of Pediatrics, University of Colorado Anschutz School of Medicine, 13123 East 16th Avenue, Box B-140, Aurora, CO 80045, USA.
⁵ Department of Family Medicine, University of Colorado Anschutz School of Medicine, 1890 North Revere Court, Mailstop F443, Aurora, CO 80045, USA.
⁶ Veterans Health Administration Rocky Mountain Mental Illness Research Education and Clinical Center, 12631 E 17th Avenue, Aurora, CO 80045, USA.

Abstract

Aim: To describe the complex roles of and crucial support provided by caregivers to young adults with cerebral palsy (CP) during the transition to adulthood.

Method: This was a qualitative study. We conducted 20 semi-structured interviews (13 caregiver; 7 patient/caregiver dyad) and analyzed data using a qualitative descriptive approach informed by phenomenological principles.

Results: We identified four major themes related to the roles that caregivers play during the transition to adulthood for young adults with CP: 1) caregivers as care coordinators; 2) navigating logistic and insurance barriers; 3) adjusting to adulthood and planning for an uncertain future; and 4) supporting maintenance of health, function, and quality of life. Overall, caregivers shared the many different ways that they act as advocates for young adults with CP. Many participants identified the extensive amount of time, energy, and financial resources required to appropriately provide care.

Conclusions: The transition to adulthood for young adults with CP is a challenging, uncertain, complex process for both adults with CP and their caregivers. Throughout this transition, caregivers also prioritize the happiness and quality of life of their adult children with CP. Our findings could be used by clinicians and researchers to develop and study patient- and family-centered transition processes for individuals with CP that attend to the struggles and priorities of youth with CP and caregivers alike.

Keywords: Caregivers; Cerebral palsy; Lifespan care; Transition.