Post on 31-Dec-2015
description
1
Seeding Research:Sprouting Change
Sarah FlickerDirector of Research
March 30, 2006
2
A bit about me
• Born & bred in Montreal• Medical Anthropology (BA, Brown U)• Epidemiology & Maternal and Child Health
(MPH, UC Berkeley)• Social Science and Health (PhD, U of Toronto)• Director of Research, Wellesley Central
3
4
Capacity Building Initiatives
•CBR: Certificate Program
• Leadership Capacity Building: Certificate Program
• WC-Maytree: Public Policy Training Institute
5
Wellesley Central Grants
• Enabling Grants• Up to 10K• Start-up funding
“The biggest outcome was that we found out that the community did not want what we thought they wanted.”
• Advanced Grants•Up to 80K over 2 years•Operational funding
“We are incredibly lucky that we have an academic who very much supports the work that we're doing and doesn't have an ego and you know, it's just amazing and very helpful. … He's got kind of his own research going on, but … he supports, you know, community-based research.”
6
Enabling Outcomes
Anticipated: completed literature reviews, developing research questions and applying for research funding. Many grantees were successful in leveraging new research and program dollars.
Unanticipated outcomes: finding new and unexpected research and program partners, developing new advocacy networks & engaging on a new level with policy makers.
7
Advanced Outcomes
Anticipated: Developing new partnerships; building new skills and capacities; developing best practice model resources and communication materials; making policy and program changes; and, attracting the attention of key stakeholders, including politicians, decision makers and the media.
Unanticipated outcomes: building strong partnerships with community agencies and members; building strong linkages between agencies; connecting individuals with resources in the community; engaging community members in research; sharing research with other agencies; and, learning more about research processes and practicing reflexivity.
Challenges: difficulty building and sustaining strong partnerships, finding appropriate funding and trouble with dissemination and knowledge transfer.
8
Ottawa Charter for Health Promotion, 1986
“the process of enabling people to increase control over, and to improve, their health”
Macro Meso Micro
E.g. health communication, education, self-help/mutual aid, organizational change, community development and mobilization, policy development, advocacy & research
9
Common Problems in Traditional Research
• Irrelevance or insensitivity to community• Research is not giving back• Communities feel over researched• Communities feel coerced• Direct benefits to community are minimal
10
CBPR
“CBPR is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change”
Israel et al, 1998
11
AHRQ Report: CBPR: Assessing the EvidenceJuly 2004www.ahrq.gov/clinic/evrptpdfs.htm
How has CBPR been implemented to date with regard to the quality of research methodology and community involvement?
What is the evidence that CBPR efforts have yielded the intended outcomes?
12
““High quality research and intense community involvement are High quality research and intense community involvement are not contrary to each other.”not contrary to each other.”
Bottom Line:
13
CBPR: Why Now?
14
CBR in Canada…
Flicker & Savan, 2005
Characterize CBR in Canada
Explore relevant CBR barriers and facilitators and possibilities for change
Advocate for creating more CBR-friendly policies in the academy, community and funding programs
15
I. Methodology
Extensive literature review of facilitators and barriers to CBPR
Individual interviews with key CBPR practitioners
Advisory committee of leading CBPR practitioners from North America
Online survey of a wide cross-section of those involved in CBPR in Canada (n=308)
Three focus groups of interested practitioners (Sept.’05)
16
Sample Characteristics (n=308)
CBR Experience n %
<3 yrs 127 48%
3-10 yrs 80 30%
>10 yrs 58 22%
Organization
Academic/Hospital 143 54%
Non profit/Citizen 79 30%
Government 27 10%
For profit/funder 16 6%
Role of Project
Principal Investigator 89 35%
Co-Investigator 56 22%
Paid Staff 45 18%
Advisory Committee Member 20 8%
Other (including community partner) 43 17%
17
II. What resources are they working with?
Duration Budget
<1 year29%
1-3 years49%
>3 years22%
N = 240
<$20,00031%
$20,001-$100,00032%
>$500,00014%
$100,001-$500,000
23%
N = 265
18
III. Involvement
Involvement in the CBPR Research Process
2.1
2.7 2.72.7
2.3
2.2
1.3
2.1
1.8
1.92.0
1.8
2.1
2.0
2.1
2.1
2.3
2.0
2.3
2.5
1.61.5 1.5
1.3 1.3
1.7
1.5
1.7
2.3
2.5
2.6 2.6
2.22.2
2.42.5 2.62.5
2.5
2.6
1.0
1.2
1.4
1.6
1.8
2.0
2.2
2.4
2.6
2.8
3.0
Supporting theproject
financially
Defining theresearchquestion
Developing themethodologyto answer the
question
Planning theresearch
Data collection(e.g.
interviewing,surveying etc)
Analysis andinterpretation
of the data
Disseminatingthe results
Offering skillbuilding
opportunitiesto build the
Using thefindings foradvocacypurposes
Using thefindings to
change policyor practice
I nvolvement Category
Mean
In
volv
em
en
t S
core
(1
-3,
3 in
dic
ate
s h
igh
est
level of
involv
em
en
t)
Academic Researchers Community Members Service Providers/NGO Government/Funders
19
IV. CBPR as an Effective Tool
The rate at which respondents cited ‘negative’ outcomes was far lower than that for ‘positive’ outcomes
Outcomes Outputs
47.8% 45.9%
40.0%36.3%
30.4%
12.6% 11.5%6.7%
3.0% 2.2% 1.9% 1.5% 0.7%
57.0%
41.1%35.9%
14.8%
4.8%
Incr
ease
dco
mm
unit
y c
apaci
ty
Pla
ns
for
futu
repro
ject
s
Cord
ial w
ork
ing
rela
tionsh
ip
New
coalit
ions
Change in a
gency
pro
gra
mm
ing/p
olic
y
Incr
ease
d f
undin
g
Change in
govern
ment
pro
gra
mm
ing/p
olic
y
People
were
upse
tw
ith e
ach
oth
er
Incr
ease
ddis
illusi
onm
ent
am
ong p
art
ners
The p
roje
ct d
id n
ot
resu
lt in a
ny
changes
Incr
ease
d m
istr
ust
Incr
ease
dpola
riza
tion
Alie
nati
on f
rom
funders
Pre
senta
tion(s
)
Publis
hed p
aper(
s)
Polic
y d
ocu
ment(
s)or
reco
mm
endati
ons
Not
applic
able
I don't
know
Frequ
en
cy (
%)
20
V. Facilitating CBPR
Facilitator Importance
4.46 4.404.22 4.19 4.19 4.16
4.06
3.60
1.00
1.50
2.00
2.50
3.00
3.50
4.00
4.50
5.00
Funding Support Tenure Credibility Trianing Advocacy Ethics PoliciesRevision
IndependentCBR ERB
Facilit
ato
r S
core
(1
-5)
21
VI. Barriers to CBPR
3.83 3.75 3.683.45
3.33 3.303.07 3.06 2.98 2.98 2.89 2.83 2.81
1.00
1.50
2.00
2.50
3.00
3.50
4.00
Sca
rcit
y o
f fu
ndin
g s
ou
rces
availa
ble
to s
upport
CB
R p
roje
cts
Lack
of
inst
itu
tion
al su
pport
for
CB
R (
e.g
. re
ward
str
uct
ure
s)
Too m
an
y c
om
peti
ng d
em
an
ds
tom
ake t
ime f
or
CB
R
Lack
of
reso
urc
es
(e.g
. sp
ace
,co
mpu
ters
, ti
me)
Perc
epti
on
th
at
CB
R lack
sm
eth
odolo
gic
al ri
gou
r an
dobje
ctiv
ity
His
tory
of
bad f
eelin
gs
an
dm
istr
ust
betw
een
aca
dem
icin
stit
uti
on
s an
d c
om
mu
nit
y
A C
BR
pro
ject
takes
too m
uch
tim
e t
o c
om
ple
te
Lack
of
repre
sen
tati
on
or
perc
eiv
ed t
oken
ism
am
on
gco
mm
un
ity m
em
bers
Belie
f th
at
resu
lts
will
not
be
dis
sem
inate
d o
r act
ed u
pon
Ch
alle
nges
of
gett
ing p
roje
ctappro
ved b
y e
thic
s
Too m
an
y p
ow
er
imbala
nce
s to
overc
om
e
Diffi
cult
y fi
ndin
g a
ppro
pri
ate
part
ners
Lack
of
skill
s an
d c
on
fiden
ce t
oen
gage in
CB
R
Barr
ier
Score
(1
-4)
Barrier Importance
22
Bottom line
CBPR is an effective strategy – but special attention needs to be paid to minimizing barriers and maximizing facilitators in order to support this approach to research.
23
Positive Youth Project
Our goal is to improve the lives of young people living with HIV, in Canada and beyond.
24
Background
•11.8 million youth (15-24) live with HIV/AIDS; 1/2 of all new HIV infections occur among youth.
•As of June 2004, 15,000 youth and young adults under the age of 29 had tested positive for HIV in Canada
•HIV-positive youth experience multiple forms of disadvantage.
•yPHAs have a wide range of specific service needs.
•There is a profound lack of resources for HIV-positive youth in Canadian urban centres.
25
Project Partners
ACCESS AIDS Network SudburyAIDS Committee of Newfoundland & LabradorAIDS Committee of SimcoeAIDS Committee of TorontoAIDS Thunder BayAsian Community AIDS ServicesCanadian Aboriginal AIDS NetworkCanadian AIDS SocietyCanadian AIDS Treatment Information Exchange (CATIE)Canadian Foundation for AIDS ResearchChildren's Hospital of Eastern Ontario (CHEO)Fusion Studios Inc.HIV Society NorthJASE
Les Enfants de BéthanieOntario AIDS NetworkOntario HIV Treatment NetworkPauktuutitPlanned Parenthood of TorontoPositive Youth OutreachSomerset West Community Health CentreTeenNet, University of TorontoTeresa GroupThe Hospital for Sick ChildrenVoices for Positive WomenWellesley CentralYouth AdvisorsYouthCoYouthlink City
26
Methods
We interviewed 70 diverse HIV positive youth (12-24) across Canada and held telefocus groups with 30 service providers to uncover:
How can we better support HIV-positive youth?
Principle Investigators
Project Coordinator
Working Group(once a month)
Youth meetings(once a week)
National Advisory Committee(quarterly)
Focus Groups with Youth[Across Canada – 1 year]
Co-Investigators(intermittently)
27
Youth-led methodology
• Setting the research agenda• Designing the questions• Designing the protocol• Analysis• Dissemination
28
Major Themes: Isolation & Stigma
• ASOs are not seen as youth-friendly institutions. “The atmosphere was not good. It looked too… like it was for sick people. … It was just not a good atmosphere. The colors of the walls were awful, people were grumpy...”
• YSOs are not seen as HIV-friendly institutions.“I can’t go to E-- and talk to youth there though because some have it and some don’t, you don’t know who does, everyone is quiet about it, you know what I mean…”
New models of collaboration are necessary to reach HIV positive youth.“Like maybe have a youth drop in centre where its just like people with HIV especially coming down and then they can just talk about whatever and they can just hang out because they’re one of them …”
29
Major Themes: Isolation & Stigma
30
Major Themes: Treatment Confusion
• Why take treatment if it can’t cure?
• What are the different options?
• What are the different side effects?
• How can I afford them?• What impact will they
have on my life?• How come I can’t just
stop and start when I want?
31
Major Themes: Treatment Confusion
32
Major Themes: Internet
high rates of Internet use & access, especially among most impoverished youth;
issues around public and private terminals;
youth use the Internet primarily for communication and entertainment;
health information seeking behavior is rare; and
youth want “one-stop shopping” from an e-health site.
The Internet may be a viable way to impart ‘youth friendly’ health information: anonymous, confidential, interactive, 24 hour access, connectivity
33
Major Themes: Internet
34
More Results - questions
What is HIV? How does it work?
CoinfectionsMedication &
TreatmentHow will HIV change
my life?Disclosure?
Choosing a docAdjusting to the newsLiving wellPregnancyGetting good help
35
Taking Action
www.livepositive.ca - a bilingual resource was developed for HIV-positive youth and ASO’s.
36
37
38
39
40
41
Actions to date
• Revitalization of the national “children, youth and families HIV network”• Trained a group of local HIV-positive youth and agency service providers to become co-researchers• Developed workshop templates to be used nationally by CATIE to address youth treatment needs•Hosted Canada’s largest youth & HIV roundtable •Developed youth-lead training modules for ASOs and YSOs seeking to become more youth/HIV friendly•Advised key local and national funders and institutions regarding youth needs and treatment issues• Conducted, presented and facilitated numerous academic and lay presentations regarding our research findings and process• Published 4 peer-review papers and 4 youth zines•Developed bilingual Web site, www.livepositive.ca / www.viepositive.ca
42
Contributions to CBPR
YouthCommunity-based
organizationsAcademic Researchers
Time, hard work, commitment
• knowledge of community, • ‘lived experience,’ • devotion, • hands-on work,• analysis & dissemination
• knowledge of community,• funding proposals• recruitment• analysis, dissemination,• program development, • community concerns
• research experience• funding proposals• project administration and
guidance, • day-to-day operation,• ethics review, • analysis & dissemination
43
new networks new skills
mutual learning‘the research itself’
personal career advancement
new programs& services for youth
Youthmentorship opportunities
grants, tenure, promotionaccess to new communities, ‘cultural competence’better data & interpretationnew dissemination outlets
research skills, being heard and feeling usefulnew information, new opportunitiesfinancial remuneration
Academic Researchers
Community Based Organizations
research skills, credibility, new partners, new programs, data for advocacy
Benefits CBPR
44
Youth: Strong dose – response!
Just coming to be a part of something was… good for me...I think helping out on a research project, well for me anyway, like makes me feel like I've done something, you know, and that's good for me. You know, maybe I didn't do a lot of stuff, you know, but I did something, you know. Do the best I could and I try. (youth, b)
The way I put my vigour into it, it took up a lot of my energy...But it took up my energy in a very good way. It gave me something to do and I felt like it was like a part-time job. So it wasn't overwhelming. It wasn't too much. (youth, a)
Ah, like it gave me renewed sense of purpose that I'm doing something good; that I'm not only helping myself but I'm helping others and I guess you can say it gives you that warm, fuzzy feeling…It made me feel useful. That was something since being diagnosed that I couldn't feel… I looked forward to the meetings that we had every Tuesday, not so much for the pizza or the money; it was, uh, it felt like I was contributing to a team again. (youth, f)
45
Another beneficiary… The research itself
• Better Questions. • Better Recruitment. • Better Data Collection.• Better Analysis. • Better Dissemination. • Better Action.
46
More Critical Concerns
“CB” “P” “R”
• Who represents community?
• What does it mean to represent community-based concerns?
• What about intra-community conflict?
• Wide range of on extent of “participation”
• Efficiency arguments
• Empowerment arguments
• Participation & empowerment ideology can inadvertently depoliticize groups
• Subjectivity greatest strength and weakness
• Academic freedom?
• Methodological rigor
• Internal vs External validity
47
Some advice on collaborating with youth…
• Go where the youth are. • Be yourself: be honest. • Build incentives to participation into your grants. • Respect difference and diversity. • Be clear about your limits. • Provide training and support, be patient, and then raise the bar. • Research is only one small part of the solution. • Where there is power inequity, adopt a 2:1 rule. • Empowerment can be a double-edged sword. • Find Supportive Environments.
48
49
Questions, comments
Sarah Flicker, PhDDirector of ResearchWellesley Central Health Corporation45 Charles Street E, Suite 101Toronto, ON M4Y 1S2 phone: 416 972-1010 X 225fax: 416-921-7228
www.livepositive.ca or www.viepositive.ca