Perceptions of Person-Centered Care Following Spinal Cord Injury

Abstract

Objectives: To (1) evaluate perceptions of person-centered care (PCC) in individuals with traumatic spinal cord injury (SCI); and (2) examine perceived differences in PCC concepts between patients continuing to receive any services from a Spinal Cord Injury Model Systems (SCIMS) facility and those who are not.

Design: We used a cross-sectional design, mailed a paper survey, and followed up with a second mailing to nonrespondents after 4 weeks.

Setting: Community.

Participants: Individuals (N=326) who received initial rehabilitation at an SCIMS facility and agreed to participate in this research study. We distinguished respondents who received any SCIMS outpatient services in the past 2 years (SCIMS users, n=137) or longer ago (SCIMS nonusers, n=189).

Interventions: Not applicable.

Main outcome measures: Participants completed the Patient Activation Measure (PAM), the Patient Assessment of Chronic Illness Care, the Global Practice Experience measure, and 5 Press-Ganey questions that assessed key elements of patient- and family-centered care.

Results: Patient perspectives of chronic illness care were more positive in the SCIMS users than nonusers (3.15 vs 2.91, P<.05); the difference is attributable primarily to higher subscale scores on goal setting and tailoring. The SCIMS users and nonusers did not differ in terms of PAM overall score or activation stage, Global Practice Experience, or Press-Ganey scores.

Conclusions: SCIMS users and nonusers differed on perceptions of chronic illness care (largely the goal-setting and tailoring component), which were more favorable for Model System users than nonusers. Results can guide strategies to enhance PCC practices after inpatient rehabilitation.

Keywords: Patient-centered care; Rehabilitation; Spinal cord injuries.