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Families living with brain injury

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

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Families living with brain injury

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  1. Families living with brain injury Ronald C. Savage, Ed.D.

  2. 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…..

  3. Early Stages of Adjusting to a DisabilityLessons 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

  4. 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. 5 ways to support families… • Family-centered care principles • Understanding coping strategies • Respecting family functioning • Developing communication skills • Creating education and training opps

  6. 1. Family-centered care • Adopting new attitude and giving up old beliefs • Guiding principles • Recognizing family members’ unique expertise and knowledge

  7. 2. Family coping styles • Psychological coper • Physical coper • Spiritual coper • Cognitive coper • Support system coper DePompei, 2008

  8. 3. Respecting family functioning • Labeling: dysfunctional or in denial versus seeing changeable behaviors • Recognizing the recovery roller coaster • Understanding cultural components

  9. Brain Development Rollercoaster

  10. 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

  11. 4. Developing family communication skills • Content of communication • Style of communication • Environment for communication • Encouraging family communication • Respect and dignity Savage 2000

  12. 5. Family education & training • Family as the ultimate Case Manager • Transfer of knowledge and skills Lash 2009

  13. Case Management Skills for Families • Assessment • Information gathering • Referral • Service coordination • Advocacy • Evaluation Lash 2009

  14. Assessment How has the brain injury affected my child? Case Management Skill #1

  15. Information gathering What do I need to know? Case Management Skill #2

  16. Referral When do I need to get a specialist involved? Case Management Skill # 3

  17. Service Coordination How do I pull this all together? Case Management Skill # 4

  18. Advocacy How can I help others understand what my child needs? Case Management Skill #5

  19. Evaluation How do I know if this is working? Case Management Skill #6

  20. Conclusion • Brain injury is contagious…it effects the entire family • Recovery is a roller coaster • Families + professionals = success • Prevention is the only cure

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