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).

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).

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 expectancy is increasing

Specific Study Aims

• To identify and characterize the physical, psychological and social barriers and facilitators of 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

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

Interviews with Rehabilitation Professionals: Challenges, barriers and facilitators

Sample characteristics: Rehabilitation Professionals (n=11)

Variable N/Mdn, min, max Gender 9 women, 2 men Profession 2 Physical Therapists

2 Occupational Therapists 2 Nurses 1 Physician 1 Psychologist 1 Social Worker/Case Manager 1 Vocational Rehabilitation Counselor 1 Rehabilitation Counselor/Case manager

Number of Years worked with SCI (Mdn, min, max)

6, 4, 14

Number of Years worked at NRH (Mdn, min, max)

7, 2, 15

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

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 survivorstake their street

knowledge, or their survival mentality

to deal with what is going on...

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

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

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

VASCI Survivor interviews: Changes, facilitators and barriers

Sample characteristics: VASCI survivors (n=25)

Variable (n=25)

Age Mdn=25; min=20, max=40 Age at injury Mdn=19; min=15, max=37 Gender 22 men, 3 women Race/Ethnicity 22 African American, 2 Hispanic

American, 1 Caucasian Injury Level 13 C-level; 12 T-level

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 meabout street life, and

how this injury has madea big change in my

life and made me doright now. I know if I go

out there again and do wrong, I might notget a second chanceThe violence, just being around it,

being able to hear and see it. That’sa chance to knock you off the tracks Some people I went to rehab with,

…seemed like they fell back into thesame traps that got them into the

situation the first time…They’re ona crash course with themselves

Violent injuries usually equate withviolent things or maybe with not living your life right...

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

Changes in peer relationships since injury

5

6

13

0

2

4

6

8

10

12

14

Positive No change Negative

Direction of change

Positive

No change

Negative

Quality of peer relationships

I have less friends than I didbefore I got hurt. Now I don’teven call most of my friends...

I came home when I was in the rehab center, they would come and see me all thetime. Now I sit in my room all day.My whole life changed since I’ve

been like this

Most people look atme now and feelsorry for me...

I don’t have any female friends buta male friend. The relationship with

the boy I was engaged to changed becauseI felt he didn’t look at me the same way.

I couldn’t accept that...

They are verysupportive and …they include me...

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.

Changes in family relationships

Changes in family relationships

7 7

9

0

1

2

3

4

5

6

7

8

9

10

Positive Negative No change

Direction of change

Co

un

t

Quality of family relationships

It’s real close…It’smy aunt’s house,…

I am close with her daughterand youngest son.

We were always very close

Before my injury, my brotherwas more like a role model…

But after my injury, he wasn’t therefor me like I thought he would be,

to comfort me and help me through it

They [parents] don’tcome up here unless I call them…

They really don’t care.

We get along betternow because I’m older

and I don’t do the bonehead

things I was doing

Changes regarding school and education

Changes in feelings about school

18

6

0

2

4

6

8

10

12

14

16

18

20

Yes No

Num

ber

• 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

Perceptions of school and education

Yes, I want tofinish school tomake it easier to

go into a different career I see now that without a GEDor high school diploma,

you can’t really get anywhere

One semester I went to UDC, just to see what itwas 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 myselfbusy all the time, maintained a sociallife, going to school, going to work.

I really did not have any time to be sick

Barrier: Employment

Employment

18

5

0

2

4

6

8

10

12

14

16

18

20

Before injury since injury

Before/after injury

Num

ber

• Majority of individuals with VASCI had some work experience prior to their injury

• Only a few had worked since their injury

Employment

I worked six days a week,ran two stores, and worked

good 60 hours per week

When I turned 18, Igot a job with the DC

government...

When I got shot I was working for [a courier] service

I had two summer jobs…I had a main job with a law firm

stacking books….

I was anironworker

I was asenior dental

assistant

Before

NoneIf I was still walking,I wouldn’t be thinkingabout going to school

I closed my stores7 months after the

injury…I don’t have the strength togo back into retail

I sit around and waitfor the mailman…thinking how am I

going to budget that$30...

I havebeen a

peer mentor

Since

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

Environmen

Coping and Rehabilitation Framework for VASCI