transition: an ethnographic study of hospice in savannah
DESCRIPTION
The purpose of this study is to explore barriers to using Hospice Savannah and their resources. Findings from this stud ywill 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.TRANSCRIPT
TRANSITIONAn ethnographic study of hospice in Savannah
2
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)
TABLE OF CONTENTS
3
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 pro-vide useful information for Hospice Sa-vannah as well as provide a foundation for PlayUp Savannah to create an instal-lation to promote community aware-ness of the non-profit organization.
STATEMENT OF PURPOSE
4
PARTICIPANT SELECTION
Scope
The project scope fo-cused on the decision-makers that facilitate use of hospice services.
How do people view death and grieving; how do they define hope, comfort, and peace within that context?
Family
What are the barriers to using Hospice Savannah
and their resources? How do we address them?
Community
t h i s b e l i eve
In times of crisis what is the decision-making process?
Who influences those decisions?
Health Professionals
What is Hospice Savannah’s core message?
A fourth research ques-tion exploring the core message of Hospice Savannah was not part of our primary focus, but was explored in depth by other re-search teams.
5
FOCUS
t h i s � be l i eve
Cultural ProbeAn 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.
MM: Age 25motherStudent
JG: Age 24grandmotherStudent
KG: Age 61motherSocial Worker
DC: Age 41motherMedical Doctor
JB: Age 36Mother under Hospice car eServer
CL: Age 24Nurse
EW: Age 26Deceased relative, fatherStudent
6
METHODOLOGY
Methodology
Data was collected through passive and participant observation, photo and video documentation, and semi-structured interviews.
Affinitize
The data that emerged from the method-ologies 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 experi-ence there. We also explored Camp Alo-ha and what methods are used to help children cope with death and grieving.
8
FINDINGS
Mothernamed KG durable power of health more than a decade
earlier�husband died when �KG was in college
Personal Professionalworked PT weekends for >10 yearsnow works full time; for >1 mo .school social worker >35 years
Hospital - �Process of careDoctor suggests hospice
Nurse repeats message
Doctor may re-enter �conversation if there’s tension
Social worker follows up
Family
Spokesperson�speaks for the familygenerally spouse or
eldest child
Husbanddisagrees with her end-of-life wisheslearned of hospice
through his aunt’s death
WG youngest son
seriously injured in car accident
LG oldest son�
had lived with her �as a caretaker
Patient�
In shock after initial �conversation with doctor
puts
fam
ily in
touc
h w
ith n
eces
sary
ser
vice
s
• trust, lack of• disagreement among family members�• initatiate conversation among children�
Brother (older)named durable power of attorneyexecutive who lives in california�
had been close with mother�Confirmed mother’s wishes, but
deferred to sister.
experience helped understand issues
Home• cleanliness• living arrangements• deteriorating health of primary caretaker
Hospice• began care at 6 mos. prognosis�• helped her “let go” of her mother
now works with older clients
KGinterviewee
wife of DGsocial worker at hospita lmother of two adult sons
current age 61
incre
dibl
e fe
elin
gs of
grat
itude
towa
rd
JBinterviewee
DAWNmother’s nurse
JOBinterviewee
HOSPICESAVANNAH
was staying at an
MOTHERhospice patient
has congestiveheart failure
been staying at Hospice House for 2 weeks
MEMORIALHOSPITAL
INDEPENDENTHOME FOR
THE ELDERLY
faxed mult
iple le
tters to
job e
xplai
ning J
B’s s
ituat
ion
became very sick &was transferred to
taking care of her mother
Afraid she would lose her job because of
absences in taking care of her mother
recommendedhospice
discu
ssion
with g
rief c
ouns
elor
mad
e he
r fe
el st
rong
er
9
FINDINGS
this believe
Cynthia Carter, MD
Doctor Hospice Savannah
PAIN GAIN
SEEHEAR
THINK/FEEL
SAY/DO
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-of-life care.
The job she has is not • depressing, in fact, she finds it incredibly rewarding.
Physician training, • specifically residency, spends too little time on Palliative and End-of-Life care.
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.”
Most of what she does is Pain • Management and Palliative Care.
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.
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.
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.
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.
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.
this believe
EMPATHY MAP
We used this method to organize and analyze the Facebook
responses to an essay written by a father whose infant son died.
PAIN GAIN
SEEHEAR
insanity
listen to music
grief is inappropriate
confusion about personal
grieving practice
sit shiva
not knowing
how to grieve
“settled account” with
loved one
comforted by the dead
imagine the dead as
present
fear of pain
comfort
depression
reflect
could have saved
the deceased (physically or
spiritually)
end of loved one’s
pain
distance = lack of physical support
look for lessons
learned
isolation in grief
happiness
being strong
read
feel guilty or
greedy for grieving
need for community
talk about
missing out on one’s
future
good memory/ lesson from loved one.
fair/unfair deaths
tell stories
unexpected “finish grieving”
ability to grieve in one’s
chosen way
talk about
deceased
afraid of losing
someone else
difficult experience =
empowerment
“coming out on the other side”
(enduring loss)
question ones action/
inaction
honesty/openness in
grief
show emotion
seeing dead body
grieving on your
schedule
cherish what you
have in life
create memory garden
Michael Jackson
& fans
“I am sorry”
(condolences)
value of life/birth
hide facts
burial
cover up/ clean up death
physical memorials (pictures,
etc.)
memory/ remembering
go to funeral
examples of grief
survivor stories
dance
hide emotion
wake/ funeral
sobbing/ crying
avoid eye contact
Jackie Kennedy (control)
silence
look for distraction/
escape
dreams of lost loved one
(very little)
prepare body for burial (orthodox jews)
parents/ family (models of
grief)
story of cause of death
should suppress emotion
share with friends,
family
disrespecting the deceased
chosen “tribal” network
THINK/FEEL
SAY/DO
DC Empathy Map
This Empathy Map illustrates the per-spective of Dr. Carter as a culmina-tion of her thoughts, actions, and views demonstrated by her account in an in-terview concerning her employer Hos-pice Savannah. Inspection of this map reveals the various challenges and successes she faces in her profession.
Cultural Probe Empathy Map
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FINDINGS
MM’s cultural map tries to highlight the roles of different family members during his mother’s transition to hospice. There were dis-agreements on how his mother’s pain was managed and who the family believed would be most affected by the loss of his mother.
only 1 wk off
disagreed on amount of morphine
Mattinterviewee
coping after deathparties with friends
girlfriend as new female figure
current age 24
thinks about life milestones mom
will miss
hospice
in homemorphine
brought in big bedmedical equipmentoxygen3-4 visits/day
no grief services used
hurricane katrina
recentlots of visitors
in home
perceptions of death
too much reliance on religious faithwishes he would have faced reality
“can’t happen to us”
school/friends
parties take mind off
Mother
liver cancerdied 4 years agoLouisianain medical field
recent car accident worsened conditions
father
coped by dating shortly after death
in medical field:ultrasounds
Grandparentsmother’s parents
wanted ashes infamily crypt
doctor
recommendedhospice
hospiceworker
man, long hair“grim reaper”
to Matt
Brother 1
age 17
Brother 3
age 11
Brother 2
age 16
has down syndrome
tried all medical options (chemo, radiation)
wantedashesspread
strong
bond
last
wee
k of
life
beca
me
care
take
r
thought too much morphine
not beneficial,negative
perception
This Cultural Model addresses the limited con-nections JG has with hospice services by denot-ing the problem areas of communication that im-pede the accessibility of the service provided.
Jessica Grenoble
SCAD Graduate Student(Design Management)
FatherTrusts in God’s
Will
Mother
GrandfatherStill Alive after
Serious Surgeries
GrandmotherHospice Service
(Unspeci�ed)
Best FriendSCAD Student
FatherDies 3 Days After
Wife
StepmotherDies from Brain
Cancer
Hospital(Unspeci�ed)
Su�ered Serious IllnessHospitalized Intermittently
Close friend of hers and her family
Cared for her in comfort of home
She
had
brea
st c
ance
r bef
ore
Suggested transfer of ill Mother to Hospice
Won’t talk about Hospice Care
Believes it’s all about money, that doctors are a�liated with insurance companies...
Stood by her husband’s decision not to use Hospice
Won’t Talk about Hopsice Care
MM
JG
11
but opt for hospice because of realization that
HOSPICE SAVANNAH
CL-neuro nurse @ Memorial Hospital
-1.5 years experience-shadowed hospice worker for a
day during student nursing-works regularly with terminally ill
patients
HOSPITALTEAM-doctors
-hospice liaison-nurses
FAMILIES/PATIENTS-doctors
-hospice liaison-nurses
many reject hospice option at first
personally feels hospice is a good choice works within
that refers
provides patient & family comfort
• Religion
• Not Wanting to “Give Up”
• Misconceptions that Hospice is “the End”
why?
FINDINGS
Ex-Wifeuninvolved
EWAge 26
University/Las Vegas Grad (Antropology &
Visual Arts)
Melissa (Mom)Married 30 years
Teaches H.S MathGrief Care from
primary Dr.
Herbert (Dad)Age 82
Engineering Prof._Had colon cancer; Remission_Later had multisystem cancer
(liver, lungs)_Diea at home, mid March
_May name UNLV building after him.
Doctor_Original estimate, 6months, 3 years
_Revised estimate of 6 months
Hospitals
Rehab Hospital Bad
Veterans Hospital
Good_Woman suggested
Hospice
Adopted half brother
died, EW found out he ahd died when she was 22
DominiqueEW’s fiance
Belgian trauma nurse. Was headed back from his home when heard
about Dad’s death
Rosalymutual friend,
Hospice VolunteerFirst learned of hospice
through her
Half siblings (late 30’s-40’s)
Jay
Rumored drug history,Uninvolved,Melissa won’t talk to him,Single
John_Twin of JayBorn again christian,Against Hospice,kept trying to “save dad” spirituality,Put up images of Jesus,wanted full funeral,Single
NICKinvolved from a distance,Single,no Money to travel,wanted memorial
MARY
Worked in BangladeshHad MoneyMelissa wishes she had contributed moreLong term boyfriend
?
LucretiaVernon’s girlfriend
VernonAge 29 Full brother, student
Initia
lly w
ante
d ch
emo
Left
Hospice chemo decision to wife, left other health decisions to her
Told wife of illness, late feburary
Went to dr. when she was in school
frustrated Dad acting child lik
e
Had power of Attorney
Melissa’s Parents(EW’s grandparents.
EW says strong influencesDidn’t try to sway decision
Gave updates about stuff
Watches Amazing Race with Vernon, ha
d w
atc
hed
with
da
d
bought him home
from hospita
l (guilt)
Husband + Wife
Eylesia sa
ys mo
m isn
t we
ll, in de
nial about ?
“Aunt Sally”
Grandmother’s SisterDied 1 yr earlierrecent experience w/ deathGrandmother saw similarities between her death and Herbert’s.EW says she starved herself, after death of husband.
Told Elysia a/b cancer Feb10th
Told
EW the m
ost about Illness
EW’s cultural model highlights the complex family dynam-ic 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 oth-er 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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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.
EW: The decision against the hospice was because he still wanted to try chemotherapy.
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.”
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.
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.
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.
positive
negative
FINDINGS
The interview data is based on ques-tions concerning familiarity with hos-pice services.
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Spheres of influence reinforce the patient’s wishes. When Hospice is at the center, each sphere supports that relationship.
Ideal Influence Structure
PATIENT
FAMILY
MEDICAL
HOSPICE
High Influence
Low Influence
No Direct Influence
Pare
nts Child
ren
Siblings Friends
Ho
spita
l
Socia
l Wo
rkers Nursing Homes
PATIENT+
HOSPICE
FAMILY
MEDICAL
COMMUNITY
Pare
nts Children Siblings Friends
Ho
spita
l
Socia
l Wo
rkers Nursing Homes
Current Influence Structure
COMMUNITY
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.
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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 con-versation about early decisions are some areas of suggested exploration.
PATIENT+
HOSPICE
PATIENT+
HOSPICE
FAMILY
Pare
nts
Children
Siblings
Friends
PATIENT+
HOSPICE
FAMILY
MEDICAL
Pare
nts
Children
SiblingsFriends
Ho
spita
l
Social
Wo
rkers
NursingHomes
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
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
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
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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 Manage-ment graduate students at the Savan-nah College of Art and Design.
Research QuestionsOur research will be guided by the fol-lowing questions:
1. What is Hospice Savannah’s core message?
2. What are the barriers to using Hos-pice Savannah and their resources? (Community, perception, negative connotations, etc.) How do we ad-dress them?
3. How do people view death and grieving; how do they define hope, comfort, and peace within that con-text?
4. In times of crisis what is the decision-making process? Who influences those decisions?
Appendix A
MethodologyData will be collected through passive and participant observation, photo and video documentation, and semi-structured interviews.
Primary Contact InformationThis project is being conducted through the Industrial Design and De-sign Management department at the Savannah College of Art and Design. For additional information please con-tact Professor Christine Miller 912-508-1058.
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RESEARCH DESIGN
Week 2 Week 3 Week 4 Week 10Week 9Week 8Week 7Week 6Week 5
Complete Phy-sician & Family
Interviews
Affinitize Interview info to identify patterns for
design aimProject Install-ment Proposal
Appendix B
Dying
18
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
______________________________________________________________________________________
- 1 -
HEALTHCAREPROFESSIONALSPROTOCOL
OPENING:"Thankyoufortakingtimetotalkwithmeaboutyour
experiencewiththeHospicereferralprocess.I'mgoingtobe
askingyousomequestionsaboutyourexperiencewithhospiceandterminallyill
patients.
Q:HowdidyouinitiallylearnofHospiceServices?
• WereyouinSavannahwhenyoulearnedofHospice?
Q:Whendoingroundsatthehospitalhowlongdoyouspendwithyourterminally
illpatients?
• Howdoyouapproachyourvisitswithterminallyillpatients?
• Hastheamountoftimechangedwithinthespanofyourcareer?More/Less?
Q:Inyourcareerhaveyounoticedwhetherornotchangesininteractionwith
patientshaveaffectedreferralstohospice?
Q:Fromyourexperiencecanyoudescribetheprocessbywhichofhowaterminal
inpatienttransitionsfromyourcareintoHospiceCare?
• Isthereasethospitalorofficeprotocolyoumustfollowinordertotransition
patients?
Q:DoyoureferpatientstoaparticularHospice?
• Why?
Q:Howdoyoudecidewhichhospicetoreferthemto?
Q:HowwouldyoudescribeHospicecaretothepatientortheirfamilies?
Q:Arethereparticularcasesthatyourecallareactionfromapatientorfamilywhen
presentedwiththehospiceoption?
(We’dliketorenderinformationaboutthetypical/atypicalresponses,ideasabout
death/grief/dyingandbarrierstohospice)
Finalquestion:Isthereanythingyou'dliketosharethatwasn't
coveredinmyquestionstoday?
CLOSING:"Thankyouagainforyourtime.Isthereanyoneelseyou
wouldrecommendthatwetalkto?Iwanttomakesurewecoverallour
bases.
Family
Community
Health ProfessionalsAppendix D
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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 par-ticipants in a one-week span.
An article chosen from ThisIBelieve.org was linked and followed by three ques-tions 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 re-membrance.
Answers to the questions posed were surprisingly in-depth and rich with an-ecdotes regarding personal loss and significant life-experiences.
Our society lacks the social aspect of coping with grief. Grieving has be-come a hidden personal experience. Individuals have not necessarily forgot-ten how to grieve; they have neglect-ed to share with one another in their grieving process. This diminished social grieving is unique to American culture. Many individuals are misinformed re-garding the grieving process and a positive perspective toward grieving is missing.
Appendix E
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TEAM BIOGRAPHIES
MEET ALEX SMITH
Alex is a candidate for a Masters degree in the field of Industrial De-sign. He received a Bachelor of Arts degree from the University of Georgia in 2007, majoring in Speech and Com-munication. 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.
MEET AUTUMN SANDERS
Autumn Sanders is currently an MA candidate in both Design Manage-ment and Graphic Design at the Sa-vannah 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 in-depth questioning and attempting to understand her audience. She views ethnographic research rooted in an-thropology as essential to a design pro-cess that can be used in the develop-ment of both systems and objects. She recently interned with ReD Associates, an innovation consultancy with offices in New York and Copenhagen.
TEAM CONTACT INFORMATION
To contact any team member by e-mail or phone please see below:
Curvan, BilliejeanE-mail: [email protected]: 646-407-8836
Fenley, ErinE-mail: [email protected]: 423-943-8376
Heine, ColleenE-mail: [email protected]: 314-974-1293
Sanders, AutumnE-mail: [email protected]: 330-715-7207
Smith, AlexE-mail: [email protected]: 239-877-6346
Professor Christine MillerTelephone: 912-508-1058
Savannah College of Art & DesignTelephone: 912-525-5100
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TEAM BIOGRAPHIES
MEET BILLIEJEAN CURVAN
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 gradu-ate 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 Ani-mation. Throughout that time Billiejean has also worked as a Creative Recruit-er at Volt Services group and repre-sented 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.
MEET COLLEEN HEINE
Colleen Heine grew up in St. Louis, Mis-souri and earned her B.F.A. in Visual Communication from the University of Kansas in 2002. After working as a de-signer for a small graphic design firm, she worked for seven years as Execu-tive Director of a not-for-profit music organization, Folk School of St. Louis. Colleen also played fiddle in a bluegrass band for several years be-fore moving to Savannah, Georgia in Spring 2010 to pursue a graduate de-gree in Design Management.
MEET ERIN FENLEY
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 Sustain-ability at Savannah College of Art & Design.