TRANSI TI ON Anet hnogr aphi cs t udyofhos pi c ei nSavannah
TABLE OF CONTENTS
STATEMENT OF PURPOSE ........................ 3 PARTICIPANT SELECTION ....................... 4 FOCUS .................................................... 5 METHODOLOGY ..................................... 6 SITE DESCRIPTION ................................... 9 ARTIFACTS .............................(See Folder) FINDINGS ................................................ 7 CONCLUSIONS ..................................... 13 OPPORTUNITIES FOR DESIGN ............... 14 APPENDICES ......................................... 15 • APPENDIX A_Introduction • APPENDIX B_Research Design • APPENDIX C_Unique Terminology • APPENDIX D_Interview Protocols • APPENDIX E_New Research Method BIOGRAPHIES ....................................... 20 • Contacts • Member Profiles DISCLOSURE FORMS ....... (See Folder)
2
STATEMENT OF PURPOSE
Statement of Purpose The purpose of this study is to explore barriers to using Hospice Savannah and their resources. Findings from this study will influence strategies that empower the local community to make informed decisions about hospice services. The data gathered will ultimately provide useful information for Hospice Savannah as well as provide a foundation for PlayUp Savannah to create an installation to promote community awareness of the non-profit organization.
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PARTICIPANT SELECTION
Scope The project scope focused on the decisionmakers that facilitate use of hospice services.
What is Hospice Savannah’s core message?
How do people view death and grieving; how do they define hope, comfort, and peace within that context?
In times of crisis what is the decision-making process? Who influences those decisions?
What are the barriers to using Hospice Savannah and their resources? How do we address them?
A fourth research question exploring the core message of Hospice Savannah was not part of our primary focus, but was explored in depth by other research teams.
Family
Health Professionals
Community
this
4
b elieve
FOCUS
EW: Age 26 Deceased relative, father Student MM: Age 25 mother Student JG: Age 24 grandmother Student JB: Age 36 Mother under Hospice car e Server KG: Age 61 mother Social Worker DC: Age 41 mother Medical Doctor CL: Age 24 Nurse
this
believe
Cultural Probe An alternative research method was incorporated to gather qualitative data regarding perceptions of death, dying, and grief. A Facebook group was created in an effort to reach and invite a vast number of potential participants in a one-week span. � � An article chosen from ThisIBelieve.org was linked and followed by three questions concerning relative points within the context of the article. � Participants were encouraged to listen to a brief recording or read the essay regarding a true story of personal loss and remembrance. � � Answers to the questions posed were surprisingly in-depth and rich with anecdotes regarding personal loss and significant life-experiences.
5
METHODOLOGY
Methodology Data was collected through passive and participant observation, photo and video documentation, and semistructured interviews.
Affinitize The data that emerged from the methodologies were processed through affinitizing and modeling. The affinity diagram aided in identifying patterns of themes within the data.
Model Interviews were transferred to cultural models while the cultural probe methods were affinitized and were modeled into empathy maps. We also modeled key quotes that helped solidify the interviewee perspectives by creating a customized model: Positions on Hospice. See Page 12.
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SITE DESCRIPTION
Allow though our research did not focus specifically on a place, the Hospice house in Savannah helped us gain insight to the philosophy behind their services, and how might clients view their end of life experience there. We also explored Camp Aloha and what methods are used to help children cope with death and grieving.
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FINDINGS
now works wit h ol
Personal WG youngest son
Home
• began care at 6 mos. prognosis� • helped her “let go” of her mother
Hospital - � Process of care
Nurse repeats message Doctor may re-enter � conversation if there’s tension
8
hospice patient has congestive heart failure been staying at Hospice House for 2 weeks
became very sick & was transferred to
Doctor suggests hospice Social worker follows up
MOTHER
was staying at an
DAWN
mother’s nurse
job
speaks for the family generally spouse or eldest child
INDEPENDENT HOME FOR THE ELDERLY
to
Spokesperson�
MEMORIAL HOSPITAL
recommended hospice
HOSPICE SAVANNAH
d xe fa
tip ul m
JOB
interviewee
ex pla ini ng JB ’s s itua tion
• trust, lack of • disagreement among family members� • initatiate conversation among children�
wife of DG social worker at hospital mother of two adult sons current age 61
taking care of her mother
Patient�
interviewee
dis cus incr sio ard edib nw tow le feel ith g ings of gratitude rief er coun ong r t selor ma s l de her fee
sue s
In shock after initial � conversation with doctor
ts
LG oldest son� had lived with her � as a caretaker
nd is
pu
Confirmed mother’s wishes, but deferred to sister.
KG
ers ta
with necessary services
Brother (older) named durable power of attorney executive who lives in california� had been close with mother�
un d
interviewee
le tte rs
h
Mother
Afraid she would lose her job because of absences in taking care of her mother
JB
Family
le
e
el pe d
• cleanliness • living arrangements • deteriorating health of primary caretaker
uch n to ly i
seriously injured in car accident
named KG durable power of health more than a decade earlier � husband died when � KG was in college
Hospice
Professional worked PT weekends for >10 years now works full time; for >1 mo . school social worker >35 years
nc rie pe ex
learned of hospice through his aunt’s death
ien ts
i fam
Husband disagrees with her end-of-life wishes
der cl
FINDINGS
confusion about personal grieving practice
insanity
fair/ unfair deaths
distance = lack of physical support
comforted by the dead
need for community
remembering ability to grieve in one’s chosen way
honesty/ openness in grief
cherish what you have in life
should
depression
“coming out on the other side” (enduring loss)
being
sobbing/ crying “I am sorry” (condolences)
THINK/FEEL
suppress emotion strong
burial
this
HEAR
survivor stories
believe
SEE
talk about
imagine the dead as present listen to
grief is inappropriate feel guilty or greedy for grieving
sit shiva
emotion
look for lessons learned
share with friends, family
unexpected
go to funeral
create memory garden
PAIN
isolation in grief
afraid of losing someone
seeing dead body
else
hide
disrespecting the deceased
future
examples of grief
• Since her Mother’s passing from Colon Cancer back when she was in residency, she wishes she had known what she now knows about end-oflife care.
cover up/ clean up death • Patient’s and their Families often complain as to why they didn’t use Hospice care sooner. • • Dr. Carter is well respected within the hospice community. • • People are often misinformed about what Hospice is as a service. • • She has heard some say “We (Hospice Savannah) kill people” • • There are physicians from other fields of medicine that continue to question how she manages practicing in such a “depressing” job.
avoid eye contact
emotion
look for distraction/ escape
“finish
GAIN
grieving”
• The job she has is not depressing, in fact, she finds it incredibly rewarding.
end of loved one’s
“settled account” with loved one
happiness
• Physician training, specifically residency, spends too little time on Palliative and End-of-Life care.
THINK/FEEL • Unless people have had a personal experience with a loved one or a friend, they don’t have any reason to seek out hospice care.
this
HEAR
believe
SEE
Cynthia Carter, MD
• In medical care, usually people know about medical fields and medical specialists through having needed them…the same is true with hospice care. • She claims she certainly would have coped more effectively at the time had I had more knowledge of Hospice Care.
Doctor Hospice Savannah
comfort
pain
missing out on one’s
hide facts
prepare body for burial (orthodox jews)
question ones action/ inaction
This Empathy Map illustrates the perspective of Dr. Carter as a culmination of her thoughts, actions, and views demonstrated by her account in an interview concerning her employer Hospice Savannah. Inspection of this map reveals the various challenges and successes she faces in her profession.
dreams of lost loved one
dance
fear of pain could have saved the deceased (physically or spiritually)
not knowing how to grieve
SAY/DO show
reflect
music
read
deceased
We used this method to organize and analyze the Facebook responses to an essay written by a father whose infant son died.
tell stories
parents/ family (models of grief)
Jackie Kennedy (control)
little) talk about
funeral
Michael Jackson & fans
EMPATHY MAP (very
physical memorials (pictures, etc.)
wake/
story of cause of death
silence
DC Empathy Map
value of life/ birth
memory/
SAY/DO
difficult experience = empowerment
chosen “tribal” network
grieving on your schedule
good memory/ lesson from loved one.
• She defends against accusations by other doctors that her job is depressing because all her patients die, by stating other physician’s patients “die too.”
PAIN • Everyone Does not know about Hospice. • What they do know isn’t accurate. • Some do not know Hopsice exists or what it means. • Misconceptions include the idea that Hospice “kills people”.
• They think advancements in technology can be used as “batteries” to keep people living... • People often delay the use of Hospice until it becomes too late. • Physicians do not know enough about Hospice so they fail to send more patients.
• Most of what she does is Pain Management and Palliative Care.
GAIN • People need to understand their Human Frailty, and make decisions based on quality of life not just working organs...
• All healthy/young people should fill out an Advanced Directive early and save the trouble of forcing their family members to make a critical desicion.
• Physicians need to realign their thinking with terminally-ill patients and what Hospice can do to help.
Cultural Probe Empathy Map
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FINDINGS
1w
ko
ff
not beneficial, negative perception
Matt MM interviewee
hospice in home morphine
coping after death parties with friends girlfriend as new female figure
brought in big bed medical equipment oxygen 3-4 visits/day
current age 24
bec
am
thou
in medical field: ultrasounds
gh t to
o mu c h
ko ee tw
Mother
age 17
wanted ashes spread
Father
mother’s parents
ine
out H
u
rph
ops
ic
Brother 3 age 11
perceptions of death too much reliance on religious faith wishes he would have faced reality “can’t happen to us”
hurricane katrina recent lots of visitors in home
MM’s cultural map tries to highlight the roles of different family members during his mother’s transition to hospice. There were disagreements on how his mother’s pain was managed and who the family believed would be most affected by the loss of his mother.
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Mother
JG
Jessica Grenoble
eC
age 16 has down syndrome
Stood by her husband’s decision not to use Hospice
n
wanted ashes in family crypt
Won’t Talk ab
disagreed on amo
Trusts in God’s Will
Grandparents
recent car accident worsened conditions
Brother 2
Care pice Hos out b a talk n’t Wo
doctor
Hospital (Unspecified)
Hospice Service (Unspecified)
Suffered Serious Illness Hospitalized Intermittently
recommended hospice
mo nt of
th ins uran ce co mpa Suggested transfer of ill Mot nies her to H ... ospice
Grandmother
Grandfather
Still Alive after Serious Surgeries
tried all medical options (chemo, radiation)
ng ro st ond b
are affi liated wi
i er rh fo red Ca
Brother 1
about money, that doctors
no grief services used
mo r p h i n e
liver cancer died 4 years ago Louisiana in medical field
it’s all eves Beli
man, long hair “grim reaper” to Matt
las
ec
are
tak
er
thinks about life milestones mom will miss
f li
fe
father coped by dating shortly after death
hospice worker
a re
SCAD Graduate Student (Design Management)
Clo se f r
ore ancer bef breast c
parties take mind off
only
co m fo r
to fh om e
Father
ien do fh ers an d
Stepmother
Dies 3 Days After Wife
he r fa mi ly
She had
school/friends
Dies from Brain Cancer
Best Friend SCAD Student
This Cultural Model addresses the limited connections JG has with hospice services by denoting the problem areas of communication that impede the accessibility of the service provided.
FINDINGS
Melissa’s Parents (EW’s grandparents. EW says strong influences Didn’t try to sway decision
od
eci s
ion t
ld To
Le f
t
em
o wife, le
eo w if n We
f t o th e r h e a
f il lne s
t to
h en s h dr. w Ha
dp
ec i s
owe
ion
ry
e w as i n s c ho
r of Attorney
s to
e
lly
w or
ks
HOSPITAL TEAM -doctors -hospice liaison -nurses
HOSPICE SAVANNAH provides patient & family comfort
s
Vernon Age 29 Full brother, student
fer
a
NICK John involved from a _Twin of Jay Rumored drug Born again christian, distance, Single, Against Hospice, history, no Money to travel, kept trying to “save Uninvolved, wanted memorial Melissa won’t dad” spirituality, Put up images of Jesus, talk to him, wanted full funeral, Single Single
good choice
Ra ce
s about stu pdate ff eu av G
FAMILIES/PATIENTS pt fo r
Lucretia Vernon’s girlfriend
Half siblings (late 30’s-40’s) Jay
ce is a
-doctors -hospice liaison -nurses
o
Adopted half brother died, EW found out he ahd died when she was 22
hospi
t bu
Ex-Wife uninvolved
Illne ss
EW Age 26 University/Las Vegas Grad (Antropology & Visual Arts)
feels
t re
e th
ca nc er Fe b1 0th
Wa tch es Am az ing
p
ers
lly ona
tha
a/
b
m os ta bo ut
Melissa (Mom) Married 30 years Teaches H.S Math Grief Care from primary Dr.
ed with dad atch dw ha n, rno Ve
Ey ? les ut ia bo say s mo al a m isnt well, in deni
sia Ely
EW Told
d Tol
Veterans Hospital Good_Woma n suggested Hospice
r
ith w
Herbert (Dad) lik hi l d f r u s t ra te d D a d a c t i n g c Age 82 Engineering Prof. _Had colon cancer; Remission me _Later had multisystem cancer ho ilt) him (gu l ht ita ug (liver, lungs) bo hosp m fro _Diea at home, mid March _May name UNLV building after him. Husband + Wife
Rehab Hospital Bad
he
ol
Ini ti
Hospitals
lth d
s, late febura
in
s
ch
CL -neuro nurse @ Memorial Hospital -1.5 years experience -shadowed hospice worker for a day during student nursing -works regularly with terminally ill patients
ith
?
Ho
ce pi
“Aunt Sally” Grandmother’s Sister Died 1 yr earlier recent experience w/ death Grandmother saw similarities between her death and Herbert’s. EW says she starved herself, after death of husband.
w
emo d ch nte wa
Doctor _Original estimate, 6months, 3 years _Revised estimate of 6 months
ho
sp ic
eb
eca
us e o
f real i za
t i on tha t
many reject hospice option at first
why?
• Religion • Not Wanting to “Give Up” • Misconceptions that Hospice is “the End”
MARY Worked in Bangladesh Had Money Melissa wishes she had contributed more Long term boyfriend
Dominique EW’s fiance Belgian trauma nurse. Was headed back from his home when heard about Dad’s death
Rosaly mutual friend, Hospice Volunteer First learned of hospice through her
EW’s cultural model highlights the complex family dynamic during the end of life process for her father. The Family creates the environment for which the patient must exist .
CL’s interview map was not as complex as the other however it was able to offer insight on how much interaction nurses had with terminally ill patients. She also highlights the difference in roles of both the medical institution and a Hospice Savannah
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FINDINGS
Positions on Hospice CL: Hospice is just so good, I wish that more families would utilize it.
JB: I’m just so grateful for this place, I really am.
KG: I had this conversation with my husband, because I know what I want, and I don’t think he’s so much in agreement with me. That’s why I need to get it on paper. CC: We have to change the way people look at death ... death is like the enemy, and you’re taught that death is abnormal and you want to avoid that and you can’t ever stop trying to beat death.
positive negative
EW: The decision against the hospice was because he still wanted to try chemotherapy.
MM: Since they were giving her such high doses of the medication it was kind of like they were killing her quicker; they were controlling how she was going to die.
JG: One of the doctors had suggested... ”Do you want to use hospice care?” Dad’s like, “No, she’s going to get over this.”
The interview data is based on questions concerning familiarity with hospice services.
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CONCLUSIONS
The relationship between Hospice and client is essential to peace at the end of life. The following model depicts the current disconnect between hospice and reaching prospective patients. The ideal influence structure has influences some of the suggested design solutions.
Current Influence Structure
Ideal Influence Structure
COMMUNITY
HOSPICE
COMMUNITY
MEDICAL
MEDICAL
en
Hosp it
Pa re
Par ds
sing Homes Nur
gs lin
al
al
Frie n
s nd
s ng
Sib
Sib li
PATIENT + HOSPICE
l Workers
Frie
sing Homes Nu r
Hosp it
Ch
ts
ren ild
l Workers
en ldr hi
PATIENT
FAMILY
cia So
C
cia So
FAMILY
s nt
Spheres of influence reinforce the patient’s wishes. When Hospice is at the center, each sphere supports that relationship.
High Influence Low Influence No Direct Influence
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DESIGN OPPORTUNITIES
PlayUp Savannah can help Hospice to establish early client relationships. Focusing on grief, encouraging early decisions and initiation of the conversation about early decisions are some areas of suggested exploration.
FOCUS ON GRIEF: Everyone can relate to grief and loss, but no one can relate to death. In promoting Full Circle grief services, PlayUp Savannah can help Hospice Savannah develop relationships with patients before the need for hospice services. model: This I Believe
PATIENT + HOSPICE
Ch
Par
ren ild
en
FAMILY ts
s ng
ds
AN EARLY DECISION IS A GIFT TO YOUR FAMILY: A formal declaration of the patient’s wishes can prevent dispute at the end of life. Using positive language is important in conveying the benefit of advanced directives, transforming them from a burdensome subject into a benefit for the entire family. model: organ donation
Sib li
PATIENT + HOSPICE Frie n
MEDICAL
s ng
en
ds
Sib li
PATIENT + HOSPICE
ren
Par
ts
Frie n
sing Homes Nur
14
orkers ial W
Ch ild
Hosp it
c So
al
FAMILY
SET THE TIME, SHAPE THE CONVERSATION: There are cultural norms and guidelines for initiating difficult medical or social conversations. Examples include parent/child conversations about sex, first mammograms, etc. PlayUp Savannah can help Hospice Savannah by developing both the means and method for that interaction. model: “the talk,” medical screenings
INTRODUCTION
The following information provides an introduction to field research that will be conducted in the City of Savannah between April 7 and May 25, 2010 by (Alex Smith, Autumn Sanders, Billiejean Curvan, Colleen Heine, Erin Fenley), Industrial Design and Design Management graduate students at the Savannah College of Art and Design.
Research Questions
Our research will be guided by the following questions: 1. What is Hospice Savannah’s core message?
Methodology
Data will be collected through passive and participant observation, photo and video documentation, and semistructured interviews.
Primary Contact Information
This project is being conducted through the Industrial Design and Design Management department at the Savannah College of Art and Design. For additional information please contact Professor Christine Miller 912-5081058.
2. What are the barriers to using Hospice Savannah and their resources? (Community, perception, negative connotations, etc.) How do we address them? 3. How do people view death and grieving; how do they define hope, comfort, and peace within that context? 4. In times of crisis what is the decisionmaking process? Who influences those decisions? Appendix A
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RESEARCH DESIGN Affinitize Interview info Complete Phyto identify patterns for sician & Family Interviews design aim
Week 2
16
Week 3
Week 4
Week 5
Week 6
Appendix B
Week 7
Project Installment Proposal
Week 8
Week 9
Week 10
Dyi ng
INTERVIEW PROTOCOLS
Potential Protocol for Physicians & Families Project: Hospice Savannah INDUS 711: Methods in Contextual Research Team: Alex Smith, Autumn Sanders, Billiejean Curvan, Colleen Hiene, Erin Fenley ______________________________________________________________________________________
HEALTH CARE PROFESSIONALS PROTOCOL OPENING: "Thank you for taking time to talk with me about your experience with the Hospice referral process. I'm going to be asking you some questions about your experience with hospice and terminally ill patients.
Community
Q: How did you initially learn of Hospice Services? •
Were you in Savannah when you learned of Hospice?
Q: When doing rounds at the hospital how long do you spend with your terminally ill patients? •
How do you approach your visits with terminally ill patients?
•
Has the amount of time changed within the span of your career? More/Less?
Q: In your career have you noticed whether or not changes in interaction with patients have affected referrals to hospice? Q: From your experience can you describe the process by which of how a terminal inpatient transitions from your care into Hospice Care? •
Is there a set hospital or office protocol you must follow in order to transition patients?
Q: Do you refer patients to a particular Hospice?
Family
•
Why?
Q: How do you decide which hospice to refer them to? Q: How would you describe Hospice care to the patient or their families? Q: Are there particular cases that you recall a reaction from a patient or family when presented with the hospice option? (We’d like to render information about the typical/atypical responses, ideas about death/grief/dying and barriers to hospice)
Final question: Is there anything you'd like to share that wasn't covered in my questions today? CLOSING: "Thank you again for your time. Is there anyone else you would recommend that we talk to? I want to make sure we cover all our bases. - 1 -
Health Professionals
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Appendix D
SURVEY INSTRUMENTS
Cultural Probe An alternative research method was incorporated to gather qualitative data regarding perceptions of death, dying, and grief. A Facebook group was created in an effort to reach and invite a vast number of potential participants in a one-week span.
Our society lacks the social aspect of coping with grief. Grieving has become a hidden personal experience. Individuals have not necessarily forgotten how to grieve; they have neglected to share with one another in their grieving process. This diminished social grieving is unique to American culture. Many individuals are misinformed regarding the grieving process and a positive perspective toward grieving is missing.
An article chosen from ThisIBelieve.org was linked and followed by three questions concerning relative points within the context of the article. Participants were encouraged to listen to a brief recording or read the essay regarding a true story of personal loss and remembrance. Answers to the questions posed were surprisingly in-depth and rich with anecdotes regarding personal loss and significant life-experiences. Appendix E
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TEAM BIOGRAPHIES TEAM CONTACT INFORMATION To contact any team member by email or phone please see below: Curvan, Billiejean E-mail: bcurva20@student.scad.edu Cell: 646-407-8836 Fenley, Erin E-mail: efenle20@student.scad.edu Cell: 423-943-8376 Heine, Colleen E-mail: cheine20@student.scad.edu Cell: 314-974-1293 Sanders, Autumn E-mail: asande21@student.scad.edu Cell: 330-715-7207 Smith, Alex E-mail: asmith60@student.scad.edu Cell: 239-877-6346 Professor Christine Miller Telephone: 912-508-1058 Savannah College of Art & Design Telephone: 912-525-5100
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MEET AUTUMN SANDERS
MEET ALEX SMITH
Autumn Sanders is currently an MA candidate in both Design Management and Graphic Design at the Savannah College of Art and Design. Prior to attending SCAD, she studied journalism at Ohio University (Athens, OH) and worked at the St. Petersburg Times. Her work is characterized by indepth questioning and attempting to understand her audience. She views ethnographic research rooted in anthropology as essential to a design process that can be used in the development of both systems and objects. She recently interned with ReD Associates, an innovation consultancy with offices in New York and Copenhagen.
Alex is a candidate for a Masters degree in the field of Industrial Design. He received a Bachelor of Arts degree from the University of Georgia in 2007, majoring in Speech and Communication. He is still in the process of developing his own design language, but particularly appreciates simplicity in function and style. He has always found interest in the human condition, the cognitive process, and logical reasoning.
TEAM BIOGRAPHIES
MEET BILLIEJEAN CURVAN
MEET COLLEEN HEINE
MEET ERIN FENLEY
Billiejean is currently a candidate for her MA in the Design Management program at the Savannah College of Art and Design. She is a recent graduate of Savannah College of Art and Design earning her B.F.A in Graphic Design. Prior to attending SCAD she attended Pratt Institute in NYC and earned her B.F.A in Film/Traditional Animation. Throughout that time Billiejean has also worked as a Creative Recruiter at Volt Services group and represented the company on international projects. Billiejean pulls inspiration from her diverse background and intrigue of different cultures she’s encountered in her work and travel.
Colleen Heine grew up in St. Louis, Missouri and earned her B.F.A. in Visual Communication from the University of Kansas in 2002. After working as a designer for a small graphic design firm, she worked for seven years as Executive Director of a not-for-profit music organization, Folk School of St. Louis. Colleen also played fiddle in a bluegrass band for several years before moving to Savannah, Georgia in Spring 2010 to pursue a graduate degree in Design Management.
Erin Fenley is a native of Johnson City, TN and holds a B.A. in Art Education from East Tennessee State University. Her professional career includes work as an art educator in public schools and non-profits, along with experience as an advertising agency art director. Erin is also a co-founder of the Little City Roller Girls flat-track roller derby team which currently has over 80 members ages 6-46. Now she skates in Savannah, Georgia and is seeking a graduate degree in Design for Sustainability at Savannah College of Art & Design.
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