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Coping with violently acquired spinal cord injury: An inductive framework

Coping with violently acquired spinal cord injury: An inductive framework. Thilo Kroll, PhD 1 , Samuel Gordon, PhD 2 , Phillip W. Beatty, MA 1 , Kianda Bell, MA 1 , and Marcus Bell 1 1 NRH Center for Health and Disability Research, Washington DC 2 National Rehabilitation Hospital

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Coping with violently acquired spinal cord injury: An inductive framework

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  1. Coping with violently acquired spinal cord injury: An inductive framework Thilo Kroll, PhD1, Samuel Gordon, PhD2, Phillip W. Beatty, MA1, Kianda Bell, MA1, and Marcus Bell1 1 NRH Center for Health and Disability Research, Washington DC 2 National Rehabilitation Hospital Washington DC Funded by the Agency for Healthcare Research and Quality (AHRQ Grant # R03 HS 13039-01).

  2. Definition of violently acquired spinal cord injury (VASCI) • ‘Our definition of VASCI: All spinal cord injuries that are a result of physically violent interpersonal behavior.Gunshot wounds are the primary type of violently-acquired spinal cord injury (VASCI) (Waters, Sie, Adkins & Yakura, 1999).

  3. Data and Facts about VASCI • Violence is the second leading cause of SCI (24.5%) after motor vehicle accidents (38.5%)(National Spinal Cord Injury Statistical Center, 2001) • Violence is the leading cause of SCI in young, urban African American males from low SES backgrounds • Violence is more likely to result in neurologically complete injuries • Mortality in VASCI is decreasing, life expectancyis increasing

  4. Specific Study Aims • To identify and characterizethe physical, psychological and social barriers and facilitatorsof coping with violently-acquired spinal cord injury from the perspective of people with VASCI and the people who provide rehabilitative services to them. • To identify rehabilitative support and intervention needs of people with VASCI, both from the perspective of VASCI survivors and health care professionals. • To inductively develop a framework of the VASCI coping process

  5. Methods • Qualitative exploratory study; inductive hypothesis-generating approach • Participatory approach (VASCI Survivor Consultant) • In-depth interviews with 25 VASCI survivors who reside in the community, and 11 clinicians • 2 sets of interviews with VASCI survivors • QSR Nvivo used for comparative content coding

  6. Interviews with Rehabilitation Professionals: Challenges, barriers and facilitators

  7. Sample characteristics: Rehabilitation Professionals (n=11)

  8. Differences in rehabilitation approach: VASCI vs. Other SCI • Majority of rehab professionals do not see differences • Some specific medical issues (injury complexity, comorbidity, health risk behaviors) • Rapport building (respect and trust) • Dealing with challenging attitudes • Life-style modification • Dealing with a fragmented support system

  9. Facilitating factors in the coping process: cognitive-emotional and behavioral • Acceptance of injury • Future orientation • Perception of injury as a consequence of risk behavior shown prior to injury • Benefit-finding and positive reframing • Spiritual and religious beliefs • ‘Survival mentality’ • Problem-solving ability and resourcefulness They are creative …They are pretty good problem solvers VASCI survivors take their street knowledge, or their survival mentality to deal with what is going on...

  10. Facilitating factors: Social-environmental • Stable family and partner relationship • Caregiver responsibilities for children • Completion of high school or GED prior to injury • Work experience prior to injury • Safe, accessible housing and living environment • Peer support

  11. Risk factors: cognitive-emotional and behavioral • Sustained anger • Prolonged denial of injury • Chronic depression with/without suicidality • Prolonged lack of injury acceptance (‘Sense of invincibility’) • Post-traumatic stress disorder • Non-adherence to self-management and secondary prevention • Alcohol and substance abuse and addition

  12. Risk factors: social and environmental • Social isolation and withdrawal from/by peers • Inaccessible, unsafe housing, neighborhood • Lack of stable caregiver support • Lack of financial resources and insurance • Lack of vocational retraining and accommodation • Social stigma and stereotyping

  13. VASCI Survivor interviews: Changes, facilitators and barriers

  14. Sample characteristics: VASCI survivors (n=25)

  15. Changes: Impact of violence Yeah,it changed my whole life… The effect it has on my mother, my wife, my kids, because it didn’t only hurt me, it hurt others. The change is teaching me about street life, and how this injury has made a big change in my life and made me do right now. I know if I go out there again and do wrong, I might not get a second chance The violence, just being around it, being able to hear and see it. That’s a chance to knock you off the tracks Some people I went to rehab with, …seemed like they fell back into the same traps that got them into the situation the first time…They’re on a crash course with themselves Violent injuries usually equate with violent things or maybe with not living your life right...

  16. Barrier: Changed quality of peer support • Before the injury 19 VASCI survivors reported having some friends; 17 reported having friends since the injury • The majority reported negative changes in peer relationships

  17. Quality of peer relationships I came home when I was in the rehab center, they would come and see me all the time. Now I sit in my room all day. My whole life changed since I’ve been like this I have less friends than I did before I got hurt. Now I don’t even call most of my friends... Most people look at me now and feel sorry for me... I don’t have any female friends but a male friend. The relationship with the boy I was engaged to changed because I felt he didn’t look at me the same way. I couldn’t accept that... They haven’t changed. Most of them are dead. Some are locked up. Some are still out. A couple of them I still talk to. They are very supportive and … they include me...

  18. Changes in family relationships

  19. Quality of family relationships Before my injury, my brother was more like a role model… But after my injury, he wasn’t there for me like I thought he would be, to comfort me and help me through it It’s real close…It’s my aunt’s house,… I am close with her daughter and youngest son. We were always very close We get along better now because I’m older and I don’t do the bonehead things I was doing They [parents] don’t come up here unless I call them… They really don’t care.

  20. Changes regarding school and education • 11 respondents had graduated from high school prior to their injury • 9 respondents have spent time in school or college since their injury • Two thirds felt more positive toward school since their injury

  21. Perceptions of school and education Yes, I want to finish school to make it easier to go into a different career I see now that without a GED or high school diploma, you can’t really get anywhere One semester I went to UDC, just to see what it was like to go back to school and what kind of obstacles that I would come up against when I go,... No, it didn’t change, I just kept myself busy all the time, maintained a social life, going to school, going to work. I really did not have any time to be sick

  22. Barrier: Employment • Majority of individuals with VASCI had some work experience prior to their injury • Only a few had worked since their injury

  23. Employment I worked six days a week, ran two stores, and worked good 60 hours per week I was an ironworker None If I was still walking, I wouldn’t be thinking about going to school When I turned 18, I got a job with the DC government... I was a senior dental assistant I closed my stores 7 months after the injury…I don’t have the strength to go back into retail I sit around and wait for the mailman… thinking how am I going to budget that $30... When I got shot I was working for [a courier] service I have been a peer mentor I had two summer jobs… I had a main job with a law firm stacking books…. Since Before

  24. Summary • The psychosocial coping process is characterized by a complex interplay of personal, social, environmental and economic, facilitating and risk factors • psychosocial coping processes post-injury may be jeopardized by the lack of family and social support and economic resources • VASCI survivors exhibit great motivation to return to school and work but frequently lack vocational counseling opportunities • Community-based systems ensuring long-term rehabilitation and community integration are lacking

  25. Coping and Rehabilitation Framework for VASCI Environmen

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