title: Starting a new conversation: Engaging Veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
abstract: Assessments of function in persons with spinal cord injury (SCI) often utilize pre-defined constructs and measures without consideration of patient context, including how patients define function and what matters to them.
  
  
  
  We utilized photovoice to understand how individuals define function, facilitators and barriers to function, and adaptations to support functioning.
  
  
  
  Veterans with SCI were provided with cameras and guidelines to take photographs of things that: (1) help with functioning, (2) are barriers to function, and (3) represent adaptations used to support functioning. Interviews to discuss photographs followed and were audio-recorded, transcribed, and analyzed using grounded-thematic coding. Nvivo 8 was used to store and organize data.
  
  
  
  Participants (n = 9) were male (89%), Caucasian (67%), had paraplegia (75%), averaged 64 years of age, and were injured, on average, for 22 years. Function was described in several ways: the concept of 'normalcy,' aspects of daily living, and ability to be independent. Facilitators included: helpful tools, physical therapy/therapists, transportation, and caregivers. Barriers included: wheelchair-related issues and interior/exterior barriers both in the community and in the hospital. Examples of adaptations included: traditional examples like ramps, and also creative examples like the use of rubber bands on a can to help with grip.
  
  
  
  Patient-perspectives elicited in-depth information that expanded the common definition of function by highlighting the concept of "normality," facilitators and barriers to function, and adaptations to optimize function. These insights emphasize function within a patient-context, emphasizing a holistic definition of function that can be used to develop personalized, patient-driven care plans.
authors.affiliation: Department of Veterans Affairs (VA), Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center of Innovation for Complex Chronic Health Care (CINCCH), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center for Evaluation of Practices and Experiences of Patient-Centered Care (CEPEP), Edward Hines Jr. VA Hospital, Hines, IL, USA. Electronic address: jennifer.hill3@va.gov.
authors.forename: Jennifer N
authors.initials: JN
authors.lastname: Hill
authors.affiliation: Department of Veterans Affairs (VA), Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center for Evaluation of Practices and Experiences of Patient-Centered Care (CEPEP), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center for Healthcare Studies, Institute for Public Health and Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
authors.forename: Salva
authors.initials: S
authors.lastname: Balbale
authors.affiliation: Department of Veterans Affairs (VA), Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center of Innovation for Complex Chronic Health Care (CINCCH), Edward Hines Jr. VA Hospital, Hines, IL, USA.
authors.forename: Keshonna
authors.initials: K
authors.lastname: Lones
authors.affiliation: Department of Veterans Affairs (VA), Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center of Innovation for Complex Chronic Health Care (CINCCH), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center for Evaluation of Practices and Experiences of Patient-Centered Care (CEPEP), Edward Hines Jr. VA Hospital, Hines, IL, USA; Center for Healthcare Studies, Institute for Public Health and Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Division of General Internal Medicine and Geriatrics, Department of Medicine, Northwestern University, Chicago, IL, USA.
authors.forename: Sherri L
authors.initials: SL
authors.lastname: LaVela
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D004185:Disability Evaluation; D006233:Persons with Disabilities; D004779:Environment Design; D005260:Female; D006801:Humans; D057187:Independent Living; D008297:Male; D008875:Middle Aged; D008889:Military Personnel; D010264:Paraplegia / Q000209:etiology; D026684:Personal Autonomy; D012656:Self-Help Devices; D013119:Spinal Cord Injuries / Q000150:complications; D014728:Veterans; D014910:Wheelchairs
keywords: Function; Photovoice; Spinal cord injury