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FacingDisability.com: State-of-the-Art Rehabilitation Information and Support in an Online World
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
Presenters have no financial interest to disclose.
This continuing education activity is managed and accredited by Professional Education Service Group in cooperation with ACRM. PESG, ACRM, and all accrediting organizations do not support or endorse any product or service mentioned in this activity.
PESG and ACRM staff have no financial interest to disclose.
Disclosures
At the conclusion, the participant will be able to:
1. Discuss the importance of education and peer support for those affected by spinal cord injury and other life-changing diseases.
2. Describe a new intervention that may assist in achieving the goal of delivering excellence in state-of-the-art heathcare via support and education online.
3. Offer an important resource for people with SCI, their families, friends and rehab healthcare providers.
4. Provide a road map which outlines the process for creating a similar website for other diseases.
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
Treatment & Interventions
Psychosocial education•Acquireneededknowledgeboth
psychosocial and physical•Understandtheconceptsofgriefandloss
Affect expression•Recognizeandidentifyfeelings•Mourntheloss
Cognitive affect regulation & processing•Understandtherelationshipbetween
thoughts, feelings, and behavior•Recognizeandcorrectinaccurate
thoughts and beliefs
Treatment & Interventions
Stress management skills•Relaxationtechniques•Positiveself-talk
Trauma narrative•Tellyourstory•Findmeaning,
help others•Peermentor
Challenges
For in individual who is injured•Lossofcontrol•Senseofidentity•Bodyimage•Peerrelationships
For the family, friends, and caregivers•Learningmedicalcareandterminology•Becomingacaregiver•Feelingsofoverprotectiveness,fear,
anxiety, depression, guilt•Learningtobalancehopewithpresentday•Findingotherswhounderstand
•Returntowork/ school/communityrole
•Datingandsexuality
What We Know…
•Relationships,belonging,andsupport are essential to quality of life
•Makeconnections
•Enhanceyourdisabilityknowledge
•Focusontheentirefamily
•Reachouttoyourcommunity
•Seekrolemodelswithinthe disability community
•Findanexpert
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…
•12hospitaldays•37rehabdays
9outof10people with SCI return home
Now what???
1,500 videos of the best answers to the most important questions
VIDEO 1: INTRO
Collecting Life Experiences In Coping With SCI
•Whatdofamilymembers need to know right away?
•Whatarethemost important questions?
Close-Ups are Powerful
Interview Set-Up
Look Who’s Talking
Morethan100people:mothers,fathers,siblings, spouses, children and people with SCI themselves
Recommendations from SCI professionals •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
VIDEO 3: RELATIONSHIPS
How to Find an Expert
How to Find an Expert
How to Find an Expert
How to Find an Expert
VIDEO 4: EXPERTS
How to Find Resources
How to Find Resources
Forums
Forums
Peer Counseling
Is It Working?
Google Analytics (12-month statistics)
2,500uniquevisitorsperweek
130,000peryear
412,000pageviews
What Videos are They Watching?
Ooyala Content Analysis (June 1, 2013 – May 31, 2014)
45,000videoplays
700hours
55-seconds = average video play
17%=Sex,Fertility, Social Life, Relationships
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 WheelchairBasics of SCI Rehabilitation
Is It Working?
Online Survey (123 Responses)
How helpful were personal experience videos?ExtremelyHelpfulorVeryHelpful:70%
Most helpful personal experience topics:Life After SCIRelationships After SCIFeelings After SCISCI Rehabilitation
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%
The Road Map
How to Use FacingDisability.com as a Model:
•CollectPersonalExperiences—findtherightpeopleto interview who have “been there and done that”
•Developinterviewquestionsthatfocusonpersonalcopingexperiences—whathaveyoulearnedandwhatdoyouknowthat will be helpful to others?
•Keepanswersshort—it’sokaytostop&startduringinterviews
•Edittokeepthebestanddiscardtherest
•Usethehighest-qualitytechnicalequipment you can afford for the interviews: camera, audio, lights, editing system
The Road Map
How to Use FacingDisability.com as a Model:
•Findacompetent,cooperativewebdeveloper to design your site
•Developacriticalmassofvideos(atleast500)beforegoinglive
•Developaselectedlistofthemosthelpfulresources— the list should be a good place to start looking for information, not the last word
•Conductquestion-and-answerinterviewswith important medical experts on topics people need to know about right away
•Weareonlyaphonecalloranemailaway
Is It Working?
Dr. Fried gets the last wordGuy W. Fried, MD Chief Medical OfficerMagee Rehabilitation Hospital Philadelphia
VIDEO 5: DR. FRIED
Claiming CE Credit If you would like to receive continuing education credit for this activity, please visit:http://acrm.cds.pesgce.com
A Spinal Cord Injury Affects The Entire Family
