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

Jennifer N. Hill*, Salva Balbale, Keshonna Lones, Sherri L. LaVela

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

11 Scopus citations

Abstract

Background 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. Objectives/hypothesis We utilized photovoice to understand how individuals define function, facilitators and barriers to function, and adaptations to support functioning. Methods 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. Results 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. Conclusion(s) 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.

Original languageEnglish (US)
Pages (from-to)114-122
Number of pages9
JournalDisability and Health Journal
Volume10
Issue number1
DOIs
StatePublished - Jan 1 2017

Funding

Sources of support: This study was funded the Department of Veterans Affairs HSR&D , QUERI study RRP 13-248 , PI: LaVela. The views expressed in this presentation are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

Keywords

  • Function
  • Photovoice
  • Spinal cord injury

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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