Patient-centered mobility outcome preferences according to individuals with stroke and caregivers: a qualitative analysis

Purpose: To explore the mobility-related preferences among stroke survivors and caregivers following post-acute rehabilitation at inpatient or skilled nursing facilities. Methods: In this cross-sectional study; semi-structured, qualitative interviews of stroke survivors (n = 24) and informal caregivers (n = 15) were conducted. The participants were recruited from the community. Results: Comparative content analysis was used to identify themes by two independent coders. The survivors (68 years) and caregivers (58 years) mentioned mobility-related consequences including inability to walk, balance, drive, and transfer; and increased falls. The survivors (63%) and caregivers (73%) also mentioned the use of assistive devices. The common rehabilitation activities included: walking (62%); followed by standing and mobility; strength and balance; and wheelchair skills. Some stroke survivors were dissatisfied as their rehabilitation was not patient-centered. Frequently mentioned outcome preferences by survivors were ability to walk (88%), move, and balance. They also wanted to acquire assistive devices to move independently. Caregivers were concerned with the survivor’s safety and wanted them to drive (53%), prevent falls, have home accommodations, and transfer independently. Caregivers (40%) also expressed the importance of receiving realistic information. Conclusions: This study suggests a need to consider the stroke survivors’ and caregivers’ mobility outcome preferences to improve the patient-centered rehabilitation care.Implications for Rehabilitation Stroke survivors and caregivers tend to differ in their outcome preferences. Caregivers expressed concern for transfers, driving, fall prevention, home modifications, and wished for realistic information. Incorporating stroke survivors and their families’ perspectives during rehabilitation may enhance patient-centered outcomes.