The impact of loss of function may significantly impair daily activities and lead to lifestyle changes requiring adjustment and adaptation in persons with spinal cord injuries and disorders (SCI/D). The social, physical, and adaptive environment can impact functioning and influence independent living. A functional needs assessment can provide information to improve function and enhance well-being among Veterans with SCI/D.
The overall goal was to conduct a needs assessment to understand functional challenges that are most important to Veterans with SCI/D, mediating factors that may affect function, and how these variables and relationships impact participation, life satisfaction, and quality of life (QOL) in Veterans with SCI/D. Specific Aims were to: (1) conduct a functional needs assessment to collect quantitative data using tools validated for use in populations with SCI/D, and (2)utilize Photovoice to empower individuals with SCI/D to convey their experiences, perspectives, and needs with regard to functional challenges/impacts through visual images and first person narrative.
Mixed methods needs assessment of Veterans with SCI/D receiving VA health care. Quantitative data were collected with a national sample via a mailed survey evaluating constructs related to all aspects of functioning, and analyzed using descriptive statistics and structural equation modeling (SEM). Qualitative data were collected using Photovoice (method used to elicit experiences through visual images and first-person narrative) with a convenience sample. Participants were given cameras and instructions inviting them to take approximately 25 photos visually representing their experiences/activities regarding function; this was followed-up with semi-structured interviews, which were audio-recorded, transcribed, and key themes were identified using inductive coding.
Functional Needs Assessment Survey.
Descriptive Statistics: Full survey data were available from 896 Veterans (62% response rate). Survey participants were, on average, 63 years old, male (94%), and white (79%); 63% had paraplegia, and 39% had a complete SCI. Reported self-efficacy (m=44) was below the normative mean (50). Compared to general population norms (mean=50), Veteran with SCI/D had worse sleep disturbance (m=51), greater negative (m=55) and worse positive (m=44) psychosocial illness impact. Compared to SCI population norms, respondents reported: average fine motor function (m=50) and self-care (m=50); worse resilience (m=49), basic mobility (m=49), manual (m=47) and power (m=46) wheelchair use, bowel (m=56) and bladder (m=57) management difficulties, bladder complications (m=52), negative pain behavior (m=57), pain interference (m=58), skin/pressure ulcer issues (m=53), independence (m=48), ability to participate in social roles/activities (m=43), and grief/loss (m=54); better ambulation (m=53) and positive affect/well-being (m=54). Compared to norms for individuals with disabilities, respondents reported higher importance of participation (m=56), but lower control over participation (m=40). Average reported life satisfaction was 19 (slightly below average). Participants reported higher tangible support (m=71), on average, than emotional support (m=65).
SEM: Several first-order factor models were conducted to confirm structure of scales before proceeding with next steps of analyses. Higher-order factor models were conducted to assess whether scales effectively measured overarching concepts (e.g., Physical Function, Participation, Quality of Life). The following higher-order factor models emerged with moderate to excellent fit: Physical Function - basic mobility, fine motor function, self-care, and manual and power wheelchair use; Physical Health - bowel and bladder management difficulties, bladder complications, skin/pressure ulcer issues, and sleep disturbance; Pain - pain behavior, and pain interference; Participation - social roles/activities, importance of participation, and control over participation; Psychosocial Factors - self-efficacy, grief, and resilience; Wellbeing - negative and positive psychosocial illness impact, positive affect/well-being, and life satisfaction; Environment - measured by the 5 subscales of the Craig Hospital Inventory of Environmental Factors (policies, physical environment, work, attitudes, and services). Latent variable path analysis was used to examine causal relationships between higher-order factors. Psychosocial Factors was found to mediate the impact of Environment on Participation. Physical Health and Pain, which were strongly correlated, both impacted Wellbeing.
Photovoice. A total of 9 Veterans participated in all aspects of Photovoice including pictures and follow-up interviews. Participants were 64 years of age, on average, Caucasian (67%), and had paraplegia (75%); average duration of injury was 22 years. All participants defined function primarily in two areas: aspects of daily living and ability to be independent. All described facilitators including: helpful tools, physical therapy, and transportation. Most (67%) described barriers including: maneuvering sidewalks/surfaces in their wheelchairs, barriers encountered in the hospital (e.g., accessibility issues); 56% described adaptations to facilitate function (e.g., using string on door handles to open doors). All participants discussed participation as highly related to level of function. Most (67%) described sports (e.g., fishing, bowling, skiing) as examples of participation; 56% emphasized positive effects of participation (i.e., feelings of enjoyment/accomplishment). Most common barriers to participation were mobility impairments, lack of transportation, and cost. Fewer Veterans mentioned facilitators to participation, one example included accessible places and open spaces.
Study results reveal key insights regarding perspectives of Veterans with SCI/D around how they define function/participation and related needs. Survey data using validated, population-normed scales offer a way to compare the outcomes of Veterans with SCI/D to the SCI/D and/or general adult populations. The use of SEM allowed us to explore complex relationships among variables, including multiple scales as predictors, mediators, and outcomes, and make inferences about causality. These analyses also allowed us to examine different aspects of function and determine what individual scales accurately assess larger constructs. This gives us a better understanding about function that can be used to influence future research and interventions. Using rich data collected through methods that allow patients to truly express themselves (Photovoice) facilitates development of a holistic, complete definition of function. Patient-driven definitions of function, importance of participation, and barriers, facilitators and adaptations to function/participation should be considered when developing personalized, patient-driven care plans to improve functioning while taking patient preferences into account. Further, data can be used to develop a lifestyle intervention for Veterans with SCI/D.
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- Etingen B, Miskevics S, LaVela SL. The Relationship Between Pain Interference and Psychosocial Well-Being Among Veterans With Spinal Cord Injuries/Disorders. The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses. 2018 Feb 1; 50(1):48-55.
- Etingen B, Locatelli SM, Miskevics S, LaVela SL. Examining the relationship between post-traumatic stress disorder and social participation among Veterans with spinal cord injuries and disorders. Disability and rehabilitation. 2018 Nov 1; 40(22):2637-2643.
- Balbale SN, Hill JN, Lones K, LaVela SL. Examining Participation among Persons with Spinal Cord Injuries and Disorders Using Photovoice. The qualitative report : an online journal dedicated to qualitative research since 1990. 2017 Jul 1; 22(7):1830-1847.
- Hill JN, Etingen B, Miskevics S, LaVela SL. Correlates of self-reported physical function in individuals with spinal cord injuries and disorders: does self-efficacy matter?. Spinal Cord. 2017 Dec 1; 55(12):1096-1102.
- Locatelli SM, Etingen B, Miskevics S, LaVela SL. Effect of the environment on participation in spinal cord injuries/disorders: The mediating impact of resilience, grief, and self-efficacy. Rehabilitation Psychology. 2017 Aug 1; 62(3):334-344.
- Hill JN, Balbale S, Lones K, LaVela SL. 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. Disability and health journal. 2017 Jan 1; 10(1):114-122.
- LaVela SL, Etingen B, Miskevics SA. Factors Influencing Self-Care Behaviors in Persons with Spinal Cord Injuries and Disorders. Topics in spinal cord injury rehabilitation. 2016 Mar 1; 22(1):27-38.
- Heinemann AW, Hill JN, Etingen B, LaVela SL. Measuring physical function with the sci-fi: cutting edge research findings for clinical and multicultural applications. Paper presented at: International Spinal Cord Society Annual Scientific Meeting; 2016 Sep 14; Vienna, Austria.
- Heinemann AW, Hill JN, Etingen B, LaVela SL. Self-Efficacy in Individuals with SCI/D with high versus low perceptions of mobility and fine motor function. Paper presented at: International Spinal Cord Society Annual Scientific Meeting; 2016 Sep 14; Vienna, Austria.
- Heinemann AW, LaVela SL, Etingen B, Locatelli (House) SM, Miskevics SA. Predictors of satisfaction with life in persons with SCI. Poster session presented at: International Spinal Cord Society Annual Scientific Meeting; 2016 Sep 14; Vienna, Austria.
- Etingen B, Locatelli (House) SM, Miskevics SA, LaVela SL. Psychosocial Factors Associated with Pain Interference in Persons with SCI/D. Presented at: Academy of Spinal Cord Injury Professionals Annual Meeting; 2016 Sep 7; Nashville, TN.
- Etingen B, Locatelli (House) SM, Miskevics SA, LaVela SL. Participation in spinal cord injured individuals with and without PTSD. Presented at: Academy of Spinal Cord Injury Professionals Annual Meeting; 2016 Sep 5; Nashville, TN.
- LaVela SL, Balbale SN, Hill JN. Experience of using Photovoice, in Individuals with Spinal Cord Injuries/Disorders. Presented at: Academy of Spinal Cord Injury Professionals Annual Meeting; 2016 Sep 5; Nashville, TN.
- LaVela SL, Etingen B, Locatelli (House) SM, Miskevics SA, Heinemann AW. What Determines Low Satisfaction with Life in Persons with SCI/D? Presented at: Academy of Spinal Cord Injury Professionals Annual Meeting; 2016 Sep 5; Nashville, TN.
- LaVela SL, Etingen B, Miskevics SA. Self-care behaviors in persons with SCI/D: resilience and other factors. Paper presented at: Academy of Spinal Cord Injury Professionals Annual Meeting; 2016 Sep 4; Nashville, TN.
- Etingen B, Locatelli (House) SM, Miskevics SA, LaVela SL. The Relationship between Pain Interference and Psychosocial Well-Being after Injury among Veterans Living with SCI/D. Paper presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- Etingen B, Locatelli (House) SM, Miskevics SA, LaVela SL. Social participation among Veterans with SCI/D: the impact of post-traumatic stress disorder. Paper presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- Hill JN, Balbale SN, LaVela SL. Completing the Definition: Understanding Factors Impacting Function Using Pictures and Narratives from Individuals with SCI. Poster session presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- Hill JN, Etingen B, Miskevics SA, LaVela SL. Self-Efficacy in Individuals with SCI/D with High versus Low Perceptions of Mobility and Fine-Motor Function. Poster session presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- LaVela SL, Erdman JM, Miskevics SA. Factors associated with self-care behaviors in persons with SCI/D: Does resilience play a role? Paper presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- Locatelli (House) SM, Etingen B, Miskevics SA, LaVela SL. Effect of Environment on Participation in Spinal Cord Injuries/Disorders: Resilience, Grief, and Self-Efficacy as Mediators. Paper presented at: Paralyzed Veterans of America Summit; 2016 Sep 1; Orlando, FL.
- LaVela SL, Lones K, Balbale SN, Hill JN. Examining participation through photos and narratives of persons with spinal cord injuries and disorders. Paper presented at: Paralyzed Veterans of America Summit; 2015 Sep 2; Jacksonville, FL.
- Hill JN, Balbale SN, Lones K, LaVela SL. Patients’ use of photovoice to define function, barriers and facilitators experienced, and adaptations to barriers. Poster session presented at: VA HSR&D / QUERI National Meeting; 2015 Jul 9; Philadelphia, PA.
Brain and Spinal Cord Injuries and Disorders