Issues in Developmental Disabilities

Traumatic Brain Injury

Families of Persons with TBI

Lecture Presenter: Charles Degeneffe, Ph.D.

Video of Dr. Degeneffe

Initial Family System Impacts Following TBI

     Anxiety Shock Disbelief Denial Frustration

Individual Family Member Reactions

Parents

   Face an extended parenthood May try to fix pre-injury problems Other family relationships and needs become secondary priorities

Individual Family Member Reactions

Spouses and Intimate Partners

    Adjustment to living with someone different from pre-injury personality and behavior Make health care and rehabilitation decisions Face an ascribed single parent status May stay in relationship out of concern

Individual Family Member Reactions

Children

   May have to do extra chores around house Can act as a surrogate parent to younger children May feel anger and embarrassment toward injured parent

Individual Family Member Reactions

Siblings

   Can feel neglected by parents Assume different roles in the family As adults, may be concerned about their long-term care responsibilities

Economic Necessity of Family Caregiving

Why do families provide so much care?

Economic Necessity of Family Caregiving 4 3 2 1 0 10 9 8 7 6 5

5 2.5

Traumatic brain injury Schizophrenia 7 Mental retardation

Economic Necessity of Family Caregiving

Per person spending FY 98 TBI versus MR

$50,000 $40,000 $30,000 $20,000 $10,000 $0

Traumatic brain injury Mental retardation

Types of Care Families Provide

Comprehensive

      Activities of daily living Monitoring medications Managing challenging behaviors Responding to alcohol and drug use Service coordination Advocacy

Impacts on Families

Backgrounds of persons with TBI

     “Vulnerable families” African-American and other persons with color Learning Disabilities Treatment for emotional problems Alcohol and other drug use

Research What are families actually experiencing when they provide this ongoing care and support?

Research Outcomes

     Focus on primary caregiver (often mothers and wives) Look at one moment in time and based on White, middle class families Initial studies based on anecdotal evidence and lack of standardized measurements Examine the correlates of a negative outcome such as depression or anxiety Overall, effects of TBI are negative and does not lessen with time

Factors Related to Family Caregiver Outcomes        Female status Pre-injury psychopathology Balanced cohesion Use of positive appraisal and family tension management Availability of social support Financial resources The severity of injury not related to post injury outcomes

A Lifespan Perspective

   Anecdotally, it’s believed family caregiving extends over the lifespan Lifespan caregiving has been demonstrated in families of persons with developmental disabilities “A Study on Siblings of Persons with TBI”

Degeneffe Research Question Is this lifespan perspective actually accurate?

A Study on Siblings of Persons with TBI     208 siblings mostly from the Midwest The majority of siblings were female, married, had a high level of education, and were White The average distance between the injured non-injured siblings was 175 miles Open-ended responses reflected a lifetime commitment to their injured brothers and sisters

On Concerns for the Future “I am the oldest sibling and the only one living in the same city as my brother who has TBI. I have just started a family, my parents—who have been the primary caregivers, are getting older. What will be my role??? I will become the primary caregiver when my parents cannot. I worry how this will affect “my” family. I would like my other brother and sister to assume some responsibility as well, but I don’t know if this will be possible. I also worry about the needs of my TBI brother, what will his future needs be?”

On Changes to the Family “Our family has become much closer since my brother’s TBI. When someone is taken from you suddenly, you want to hold on to the family members you have. I have grieved the loss of my brother for that man will never be again. I have hope for who is laying in a nursing home, but also believe there are worse things than death. Our family does well together. We often have to be patient and understanding to those who have different opinions and feelings. We are all okay.”

On Concerns for the Future “I don’t really remember life before my brother’s accident. It’s hard to cope at times, but we survive. I look at life differently now—more compassionate towards disabled people. I tend to push people to thrive for better lives—as my brother’s seems to be hopeless—I continue to be helpful for him.”

Support What can social workers do to support siblings?

How Families Cope

What families say they need from professionals

   Honest and accurate information Direction, support, and respect Active and collaborative involvement in the rehabilitation process

Types of professional services     Supportive counseling and family therapy Respite care Transitional housing and independent living programs Vocational rehabilitation, including supported employment