Families living with brain injury

Ronald C. Savage, Ed.D.

How can we better support our families?

? Do we become more empathetic ? Do we listen harder ? Do we work harder, longer ? Do we involve them in everything ? Do we protect them and solve

problems for them ? What have we learned before…..

Early Stages of Adjusting to a Disability Lessons from special needs literature

Feeling of life being irrevocably changed after diagnosis

Differences in emotional responses between spouses

Period of mourning death of dreams for child

Respect hope and don’t mistake it for denial

Lash, 2007

Reasons parents distrust professionals from MR/DD literature…

Professionals encourage maximizing young adult’s independence but do not understand cost to family in time and energy

Tell parents they either do too much or too little

Parents worn down dealing with system and want to avoid further interactions

Hard for parents to believe professionals are listening to them.

Stineman, Morningstar, Bishop, and Turnbull, 1993.

5 ways to support families…

Family-centered care principles Understanding coping strategies Respecting family functioning Developing communication skills Creating education and training opps

1. Family-centered care

Adopting new attitude and giving up old beliefs

Guiding principles Recognizing family members’ unique

expertise and knowledge

2. Family coping styles

Psychological coper Physical coper Spiritual coper Cognitive coper Support system coper

DePompei, 2008

3. Respecting family functioning

Labeling: dysfunctional or in denial versus seeing changeable behaviors

Recognizing the recovery roller coaster Understanding cultural components

Brain Development Rollercoaster

World equals 100 people

57 Asians 21 Europeans 8 Africans 14 North/South Americans

70 of 100 people of color 70 of 100 would not be Christian 45% of world’s wealth held by 6 people – all US citz 70 unable to read 80 would live in sub-standard housing 50 would suffer from malnutrition 1 would have a college education

4. Developing family communication skills Content of communication Style of communication Environment for communication Encouraging family communication Respect and dignity

Savage 2000

5. Family education & training

Family as the ultimate Case Manager Transfer of knowledge and skills

Lash 2009

Case Management Skills for Families

Assessment Information gathering Referral Service coordination Advocacy Evaluation

Lash 2009

Case Management Skill #1

Assessment How has the brain injury affected my child?

Case Management Skill #2

Information gathering

What do I need to know?

Case Management Skill # 3

Referral When do I need to get a specialist involved?

Case Management Skill # 4

Service Coordination

How do I pull this all together?

Case Management Skill #5

Advocacy How can I help others understand what my child needs?

Case Management Skill #6

Evaluation How do I know if this is working?

Conclusion

Brain injury is contagious…it effects the entire family

Recovery is a roller coaster Families + professionals = success Prevention is the only cure