Coping with violently acquired spinal cord injury: An inductive framework Thilo Kroll, PhD 1, Samuel...
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Transcript of Coping with violently acquired spinal cord injury: An inductive framework Thilo Kroll, PhD 1, Samuel...
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