The Patient Experience Across the Care Continuum: Inpatient Rehabilitation, Discharge Preparedness, and Community Reintegration after Spinal Cord Injuries/Disorders

Sherri L. LaVela, Center of Innovation for Complex Chronic Healthcare (CINCCH), Department of Veterans Affairs, Edward Hines Jr. VA Hospital, Hines, Illinois, USA AND Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL Follow
Myrissa Le, Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago IL
Ibuola O. Kale, Center of Innovation for Complex Chronic Healthcare (CINCCH), Department of Veterans Affairs, Edward Hines Jr. VA Hospital, Hines, Illinois, USA
Ashley Craig, John Walsh Centre for Rehabilitation Research, Kolling Institute AND Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
Jane Duff, Department of Clinical Psychology, National Spinal Injuries Centre, Stoke Mandeville Hospital, Buckinghamshire Healthcare NHS Trust, Aylesbury, UK
Marcel Post, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
Sara Ahmed, McGill University, Faculty of Medicine and Health Sciences, Research Institute - McGill University Health Centre, Centre de recherche interdisciplinaire en réadaptation, Montreal, Quebec, Canada
Allen W. Heinemann, Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL AND Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago IL

ORCID

Sherri L. LaVela: https://orcid.org/0000-0001-9900-0120

Ibuola O. Kale: https://orcid.org/0000-0002-0672-3328

Ashley Craig: https://orcid.org/0000-0001-7647-7604

Jane Duff: https://orcid.org/0000-0003-1893-8593

Marcel Post: https://orcid.org/0000-0002-2205-9404

Sara Ahmed: https://orcid.org/0000-0001-5172-6790

Abstract

The objective was to describe patient experiences, barriers, and facilitators of inpatient rehabilitation, discharge preparedness, and community reintegration after spinal cord injury and disorders (SCI/D) from the perspectives of Veterans with SCI/D. Methods included a descriptive qualitative design using a virtual focus group analyzed via reflexive thematic analysis. Focus group participants (n = 7) were mostly male, white, injured for 1-10 years, with mean age of 52 years. Two domains were identified. The first domain, Barriers and ways rehabilitation could have improved patient experience, included five themes: (1) insufficient preparation for psychological impacts; (2) inadequate preparation for relationship changes; (3) lack of focus on public outings and `real-world' functioning; (4) rehabilitation service delivery gaps, e.g., unsuitable length of stay and not enough therapy; and (5) lack of a caregiving plan before discharge. The second domain, Facilitators and complements to rehabilitation and discharge transition to community living, identified five themes: (1) specialty care by a cohesive multidisciplinary team; (2) suitable length of stay and helpful therapies; (3) preparedness for discharge; (4) care partner readiness efforts; and (5) involvement of peer/advocacy groups. Our findings can be used to optimize patient rehabilitation approaches during the early period after SCI/D to capitalize on factors that facilitate patient experiences during the rehabilitation periods as well as successful community reintegration. Recommendations include having a specialty care focus, care partner readiness, and peer and advocacy group engagement while addressing patient-identified barriers, e.g., lack of attention to emotional recovery, limited preparation for relationship changes, and limited real-world practice.

Recommended Citation

LaVela S, Le M, Kale I, Craig A, Duff J, Post M, Ahmed S, Heinemann A. The Patient Experience Across the Care Continuum: Inpatient Rehabilitation, Discharge Preparedness, and Community Reintegration after Spinal Cord Injuries/Disorders. Patient Experience Journal. ; 13(3):376-392. doi: 10.35680/2372-0247.2183.