FacingDisability.com: The Changing Face of Spinal Cord Injury Education and Support

A Spinal Cord Injury Affects The Entire Family

Faculty

Sara J. Klaas, MSW, C-ASWCM, Shriners Hospital for Children – Chicago

Thea Flaum, Founder and President, Hill Foundation for Families Living With Disabilities – Chicago

Commercial Support was not received for this activity.

Sara J. Klaas, MSW, C-ASWCM has no financial interest to disclose.

Thea Flaum has no financial interest to disclose.

Disclosures

•Discusstheimportanceofeducationandpeersupport for those affected by SCI

•Describeanewinterventionthatmayassistinachieving the goal of delivering excellence through state-of-the-art healthcare via support and education online

•Offeranimportantresourcefor people with SCI, their family, friends, and healthcare providers on the rehab team

Today’s Learning Objectives

Spinal cord injury is sudden and life changing

Life is turned upside down•EntireFamily•Friends•Community

Coping with the injury•Physical•Psychological•Social•Financial

Background…

Balancing Physical and Psychological Needs•Levelofinjury•Immediatemedicalconcerns•Treatment,meds,rehab•Complications–pain,spasticity,UTI’s,blood

clots, pressure ulcers, autonomic dysreflexia

Emotional Shock•Thiscan’tbehappeningtome

Denial vs. Hope•Thisisonlytemporary

Trauma, Hospitalization, & Rehab

Initial Goals•Impartknowledgeofnewinjury•Enhancelevelofindependence•Prepareforrejoiningpre-injuryactivities

including work or education•Returntothecommunity

as soon as possible

Focus is, primarily, on the injured individual•Shorterlengthsofstay

Trauma, Hospitalization, & Rehab

Disability is truly a family affair as it changes the balance in the family system

All family members are impacted in unique and diverse ways

The initial post-disability period is often a time of crisis but also represents a time of opportunity

Disability: A Family Affair

It’sallaboutcommunity:re-integratingbackintothe community and returning to family and friends!!

The Goal of Rehabilitation

What Those with SCI Tell Us...

•Developasupportnetwork

•Keepuptodate…geton every mailing list you can

•Talk,talk,talk…witheachother

•Usetechnologytokeepyou connected – social networking, emails, care pages, etc.

FacingDisability.com

•Cuttingedge,internet-basedproject

•Decreasedisolation,educate,&support

•Connectwithexperts, peers&familymembers

•Instantlyavailable

After an SCI, the Family Often Has a Sense of Isolation

•10,000-12,000U.S.spinalcordinjuriesperyear

•Halfaged16-30attimeofinjury

•80percentmale

•Halfresultinquadriplegia/tetraplegia

•270,000peoplenowlivingwithSCI

After only…

•11hospitaldays•36rehabdays

8outof10people with SCI return home

Now what???

VIDEO 1: INTRO

Collecting Life Experiences In Coping With SCI

•Whatdofamilymembers need to know right away?

•Whatarethemost important questions?

Close-Ups are Powerful

Look Who’s Talking

Morethan100people:mothers,fathers,siblings, spouses, children and people with SCI themselves

RecommendationsfromSCIprofessionals•RehabilitationInstituteofChicago•ShrinersChildrens

Hospital – Chicago•SchwabRehabilitation

Hospital – Chicago•MageeRehabilitation

Hospital – Philadelphia•MarianjoyRehabilitation

Hospital – Chicago

Keep It Short

The internet is an impatient medium

1350videostoday...

90percentofthemare

LESSTHANONEMINUTELONG

How to Find What You’re Looking For

How to Find What You’re Looking For

How to Find What You’re Looking For

VIDEO 2: TOPICS & QUESTIONS

How to Find Who You’re Looking For

How to Find Who You’re Looking For

How to Find Who You’re Looking For

How to Find Who You’re Looking For

How to Find Who You’re Looking For

How to Find an Expert

How to Find an Expert

How to Find an Expert

How to Find an Expert

VIDEO 3: EXPERTS

How to Find Resources

How to Find Resources

Forums

Peer Counseling

Is It Working?

Google Analytics (12-month statistics)

1,200uniquevisitorsperweek

60,000peryear

250,000pageviews

Is It Working?

Online Survey (123 Responses)

What sentence describes you best?IamapersonwithSCI:48%IamafamilymemberofapersonwithSCI:19%Iamahealthcareprofessional:16%

How old are you?51andup:36%35-50:30%25-34:22%

How easy was it to navigate our website?ExtremelyEasy:26%VeryEasy:46%

Is It Working?

Online Survey (123 Responses)

How helpful were videos by spinal cord injury experts?ExtremelyHelpfulorVeryHelpful:71%

Most helpful expert topics:SpinalCordInjury101Sex and FertilityAdjusting to Social Life in a WheelchairBasicsofSCIRehabilitation

Is It Working?

Online Survey (123 Responses)

How helpful were personal experience videos?ExtremelyHelpfulorVeryHelpful:70%

Most helpful personal experience topics:Life After SCIRelationshipsAfterSCIFeelings After SCISCIRehabilitation

Is It Working?

Online Survey (123 Responses)

How would you rate the overall effectiveness of the website?ExtremelyEffective:28%VeryEffective:36%ModeratelyEffective:27%

How likely are you to recommend our website to a friend or co-worker?ExtremelyLikely:40%VeryLikely:31%ModeratelyLikely:15%

What’s Next?

A new mobile app that will enable users to make their own videos and send them to us

A Spinal Cord Injury Affects The Entire Family