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2015 HSR&D/QUERI National Conference Abstract

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3074 — Patients' use of photovoice to define function, barriers and facilitators experienced, and adaptations to barriers

Hill JN, Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI);Center of Innovation for Complex Chronic Health Care (CINCCH); Balbale S, Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI);Center of Innovation for Complex Chronic Health Care; Northwestern University; Lones K, Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI);Center of Innovation for Complex Chronic Health Care (CINCCH); LaVela SL, Spinal Cord Injury Quality Enhancement Research Initiative; Center of Innovation for Complex Chronic Healthcare; Northwestern University;

Objectives:
Develop an understanding of how patients define their function, facilitators and barriers, and adaptations to facilitate function using photovoice.

Methods:
Informational flyers were used to recruit Veterans with SCI/D from Hines VA. Participants were given cameras, instructions, and were asked to take photographs of things that (1) help your ability to function the way you want to and (2) you see as a barrier to your ability to function the way you want to. Those who completed the interview-phase received a blank memory card and $10. Interviews were audio-recorded, transcribed, and analyzed using grounded thematic coding. The coding process included: (1) independent coding with consensus to develop a codebook and (2) use of codebook with weekly meetings to discuss remaining coding, discrepancies, and reach consensus. Final coding was recorded using Nvivo 8.

Results:
Participants (n = 13) were male (92%), Caucasian (77%), had paraplegia (75%), were 64 years old, on average, and average time-since-injury was 20 years. All participants defined their function primarily in two areas: aspects of daily living and ability to be independent. 100% described facilitators including: helpful tools, physical therapy, transportation, and role of caregivers. 77% described barriers including: maneuvering sidewalks/surfaces in their wheelchairs, wheelchair-related issues, and barriers encountered in the hospital (e.g., accessibility issues). Finally 54% described adaptations to facilitate function (e.g., using string on door handles to open doors and use of a bathmat to steady bread to spread condiments.)

Implications:
Existing literature typically defines function using a battery of validated assessments and instruments with closed-ended questions. Patient definitions of function in study are consistent with those in the literature involving ability to perform daily activities and having some sense of independence. However this study contributes to the literature in a number of ways, particularly in the patients' narrative discussions of barriers to function and the adaptations used to overcome those barriers.

Impacts:
Patient-driven definitions of function, barriers and facilitators to function, and adaptations to function can be used to develop personalized, patient-driven care plans and using rich data collected in a manner that allows patients to truly express themselves facilitates development of a more holistic, complete definition of function.