Community voices in program development: the wisdom of individuals with incarceration experience.
O'Gorman, Claire M. ; Martin, Megan Smith ; Oliffe, John L. 等
The Canadian incarceration rate of 116 per 100,000 people reveals a
relatively high rate of incarceration compared to Western European
countries. (1) Although the absolute number of Canadians with
incarceration experience is relatively small, they experience many
health inequities and are among the most underserved populations in
Canada. (2-5) Furthermore, there is increasing evidence that the
determinants of criminality and recidivism are similar to the
determinants of health. For example, criminal behaviour patterns are
associated with substance dependence which is often an expression of
trauma and unmet health and social needs, including inaccessible health
care services. (6) Imprisonment itself also negatively impacts health
for several reasons, including separation from family, unhygienic
facilities, and poor self-care as a reaction to imprisonment. (7)
Self-reported health problems are also found to increase with
inmates' duration of incarceration. (8) Upon release from prison,
individuals face many challenges to reintegration, including social
exclusion, which is often underpinned by the stigma of incarceration.
(5,9,10)
Although health-seeking behaviours of prisoners can improve when
appropriate prison health services are provided, barriers persist to
accessing health services in the community. (11) As health care
provision often focuses finite resources on the most pressing health
needs, individuals with incarceration experience in particular have
little access to preventive health programs. Indeed, the authors of the
current article were unable to locate any Canadian-based preventive
health promotion programs targeted to individuals with incarceration
experience living in the community.
The Collaborating Centre for Prison Health and Education (CCPHE) at
the University of British Columbia is committed to using participatory
processes of engagement in order to encourage collaborative
opportunities for health, education, research, service and advocacy to
enhance the (re)integration of individuals who have been in custody into
their families and their communities. Participatory modes of engagement
are derived from participatory action research (PAR), which recognizes
the need for persons being studied to participate in all phases of
research to foster empowerment, community capacity building, and social
change. (12,13) In recognizing that health concerns are value-laden and
culturally defined, (13) the academic group acknowledges that prison
health interventions are more likely to be effective with input from
those with incarceration experience.
Figure 1. Project values
Values
Partnership
Equal participation of all relevant stakeholders
Voice
All partners are encouraged to share their opinions
and ideas
Active Listening
Truly hearing what each other have to say
Respect
Acknowledging that everyone has something to offer
Reciprocal Learning
Learning from one another's strengths
Cultural Safety
No judgement
Transparency
Honesty and accountability in all actions
In 2005-7, a participatory health research program in a female
correctional centre enabled incarcerated women to identify their health
goals. (14) In follow-up, a CIHR-funded participatory research project
is investigating barriers and facilitators to attaining health goals.
Preliminary findings from this project suggest that effective preventive
health tools can assist women in attaining their health goals following
release from prison.
This article focuses on a CCPHE community-based preventive health
project funded by the Vancouver Foundation that aims to develop
preventive health tools using participatory approaches with individuals
with incarceration experience. The objectives of this article are 1) to
describe the processes by which the project engaged individuals with
incarceration experience as partners in all phases of the development of
the project, and 2) to describe the processes by which the preventive
health priorities were decided.
PARTICIPANTS, SETTING AND INTERVENTION
Participants
The academic research team invited two organizations, both networks
of prison leavers in British Columbia, to be partners in the project:
Long Term Inmates Now in the Community (L.I.N.C.) and Women in2 Healing
(Wi2H). L.I.N.C. is a registered society that comprises mostly men who
have served long prison sentences. (15) Wi2H is an informal network of
women with incarceration experience in the provincial corrections system
which provides closed Facebook support and opportunities for women to
engage in participatory health and education activities. (16) Both
organizations have the ability to disseminate invitations to others,
inviting participation in the project beyond their formal membership to
reach wider networks of formerly incarcerated men and women living in
the province.
[FIGURE 2 OMITTED]
[FIGURE 3 OMITTED]
Setting
In this participatory project, the setting is within an iterative
process that aims to design and pilot-test preventive health tools and
programs through engagement of individuals with incarceration
experiences who are living in British Columbia, Canada. An example of
the iterative nature is in the funding proposal, where the details could
not be articulated because the design of the intervention required input
from participants who were not yet engaged in directing that content. As
such, the setting is continually changing and dynamic, requiring
flexibility in project design, management and participation.
Intervention
Engagement of Individuals With Incarceration Experience as Equal
Partners in All Phases of Developing the Project
In order to reach the project's objective of engaging
individuals with incarceration experience as equal partners in all
phases of project development, relationships were initiated at the very
onset of the project. Members of Wi2H and L.I.N.C. were invited to
assist in reviewing the letter of intent and the grant proposal
application. The academic research team then invited representatives of
both organizations to an initial meeting to develop a set of values that
would underpin the project, and to begin a dialogue regarding the
preventive health topics that the project would focus on. After funding
was awarded, ethics approval was obtained from the University of British
Columbia's behavioural research ethics board. The academic research
team invited stakeholder organizations (and their representatives) to
collaborate in the Project Advisory Committee.
Processes by Which the Topics for Preventive Health Were Decided
The project aims were to improve the health outcomes of individuals
with incarceration experience through user-designed preventive health
tools and programs. In the funding proposal, we explained that the three
preventive health priorities would be chosen in an iterative and
participatory manner. Key informants from both partner organizations
were invited to participate in focus groups to assist in identifying the
priority foci. Two separate focus groups were planned in partnership
with the organizations' facilitators and a research assistant
(O'Gorman), and were conducted at regularly scheduled member
meetings in the respective organizations' meeting places in the
lower mainland of British Columbia. Participants were invited through
e-mail and a closed Facebook group and were provided gift card
honorariums for their contribution to the project. Three key informant
in-depth individual interviews were also conducted with women who
expressed interest. They were invited to participate through snowball
sampling via e-mail invitation.
The first focus group with L.I.N.C. was comprised of 12 men with a
total lifetime in custody averaging 21 years, and 4 female family
members who were present for the discussion but did not participate. Age
ranged from 23-68 years, with an average of 47 years; 1 participant was
Aboriginal and the rest were Anglo-Canadian. The second focus group with
Wi2H members was comprised of 3 women with a total time in custody
averaging 5 years and an average age of 40 years; 1 participant was
Aboriginal and 2 were Anglo-Canadian.
Focus groups and interviews were recorded and transcribed verbatim,
then analyzed using Interpretive Phenomenological Analysis (IPA). The
purpose of IPA is to describe how individuals experience and interpret a
phenomenon, in this case health. Findings were member-checked with focus
group participants, and were then presented, discussed and verified
during the initial meeting of the Project Advisory Committee (PAC).
Findings were distributed to all participants in a literacy-appropriate
information sheet, which included contact information to facilitate
feedback or questions regarding the interpretation process. These
activities ensured that findings were validated by and communicated with
participants, acknowledging that their contributions were essential to
the project.
RESULTS
Engagement of individuals with incarceration experience as equal
partners in all phases of the project development
At the first formal meeting of the PAC, the list of project values
was discussed and agreed upon (see Figure 1), the conceptual diagram for
the project decision-making processes was developed (see Figure 2), and
the PAC terms of reference were finalized. The meeting also included a
time of self-reflection for all PAC members modeled on Aboriginal
talking circles.
Processes by which the topics for preventive health were decided
Based on the literature and previous prison health research
findings, the co-investigators had conceptualized three potential topics
of preventive health that were disease-focused. However, thematic
findings extended beyond a disease focus to encompass more humanistic
issues deemed as underpinning a variety of common afflictions and issues
impacting people with incarceration experience. Similar to an iceberg
analogy (Figure 3), the determinants of poor outcomes in the health
priority areas of cancer, mental health and addiction, and blood-borne
infectious diseases were visible (and perhaps measurable), yet deeper
issues underpinned health challenges for prison leavers, many of which
reflect the social determinants of health. For example, health care
access was described as a challenge, as a male participant confirmed,
"most people who get out of jail have no idea that they need a
medical card." Expanding upon this, a female participant expressed
feelings of disempowerment in asserting, "who is going to listen to
me? I'm just a goddamn drug addict and a criminal."
Although much of the focus group and interview discussions centered
on issues and barriers, there were several suggestions for ways to
deliver health promotion programs. The subthemes of these ideas and
their justifications were clustered into the themes of: share knowledge,
support self-advocacy, and strengthen relationships, as outlined in
Table 1.
These findings led to the formation of the project mission
statement that was formalized at the PAC meeting: "Promoting
holistic health and preventive practices for individuals with
incarceration experience in mental health and addictions, cancer, and
blood-borne infectious diseases by sharing knowledge, supporting
self-advocacy, and strengthening relationships." The findings
enabled the project mission statement and interventions to include a
biopsychosocial definition of health, and to assure that future project
directions address disease outcomes as well as their underlying social
factors.
DISCUSSION
Innovative in design and partner engagement, our project
demonstrates the feasibility and importance of using participatory
methods in preventive health projects, especially within design and
priority setting with a marginalized population. The results of the
focus groups and interviews indicate the high level of self-awareness
that prison leavers possess, despite facing many barriers to health.
Through participatory action research methodologies, the focus of the
project shifted from medical topics to a more holistic approach that
aims to address the social determinants of health. By addressing these
large structural inequities that exist "below the surface",
the project is likely to have more sustainable and wide-reaching
impacts. Additionally, involving participants in the planning phases of
a project acknowledges their lived experience and communicates its
value. In working within community-identified areas for intervention,
this project becomes more meaningful to the population it serves by
emerging from and being responsive to the end-users' needs.
The importance of participation in the planning phases is outlined
in several health promotion theories. In the PRECEDE-PROCEED model,
understanding health from the perspective of community members is poised
as a pragmatic and moral imperative. Participation is also highlighted
as an important part of sustainability and capacity building. (13)
Fournier and Potvin (1995) identify three goals of public participation
with different underlying values: 1) maximizing the outcomes of a
program, 2) acting as a democratic tool to empower marginalized people,
and 3) helping people take control of their lives. (17) It is amid this
tripartite of motivations that voice, empowerment, and capacity building
reveal participation as an intervention in and of itself. The process,
therefore, is as important as the findings that are drawn from the data.
One major challenge faced in this intervention was assuring
accessible participation. For example, 16 women expressed interest in
attending the Wi2H focus group, but only 3 were able to attend.
Invitations to participate in phone interviews were therefore
distributed in order to allow for participation with fewer barriers. In
the future, project meetings and workshops may need to include an option
for conference-call participation or take place in a more accessible
location. A potential challenge for this project with so many
stakeholders will be to maintain the focus and direction of the project
as consistent with the values and mission that were developed by those
it serves.
Despite these challenges and the significant time investment that
is required, this intervention demonstrates that health promotion
projects must engage end-users from the outset, especially in project
planning. While generalizability is neither the aim nor claim of
qualitative research, the findings drawn from this pilot project afford
important direction for future work. Specifically, longitudinal studies
comprising formative feedback from end-users along with measurable
program outcome evaluations will assist programs to more effectively
support these underserved populations.
Through the participatory planning process, not only do programs
become more relevant to those they serve, but community members also
become engaged and empowered. The depth of knowledge revealed in focus
groups and interviews with prison leavers confirms the value of emic
perspectives in thoughtfully considering the care needs of this
population. Future projects, therefore, especially with marginalized
populations, must make a concerted effort to involve those they seek to
serve, and to trust their wisdom.
Acknowledgements: Vancouver Foundation; Women in2 Healing; Long
Term Inmates Now in the Community (L.I.N.C.); Department of Family
Practice, University of British Columbia; School of Population and
Public Health, University of British Columbia; Dr. Jane Buxton; Dr.
Janusz Kaczorowski; Dr. Viv Ramsden; and Kelly Murphy. Dr. John L.
Oliffe is supported by a Michael Smith Scholar Award.
Conflict of Interest: None to declare.
REFERENCES
(1.) Public Safety Canada Portfolio Corrections Statistics
Committee. Corrections and Conditional Release Statistical Overview.
Public Works and Government Services Canada, 2008. Available at:
http://www.publicsafety.gc.ca/res/cor/rep/_fl/2008-04-ccrso-eng.pdf
(Accessed July 2011).
(2.) Binswanger IA, White MC, Perez-Stable EJ, Goldenson J, Tulsky
JP. Cancer screening among jail inmates: Frequency, knowledge, and
willingness. Am J Public Health 2005;95(10):1781-87.
(3.) Fazel S, Baillargeon J. The health of prisoners. Lancet
2011;377(9769):956-65.
(4.) Baillargeon J, Black SA, Pulvino J, Dunn K. The disease
profile of Texas prison inmates. Ann Epidemiol 2000;10(2):74-80.
(5.) Freudenberg N, Daniels J, Crum M, Perkins T, Richie BE. Coming
home from jail: The social and health consequences of community reentry
for women, male adolescents, and their families and communities. Am J
Public Health 2005;95(10):1725-36.
(6.) Krieg AS. Aboriginal incarceration: Health and social impacts.
Med J Aust 2006;184(10):534-36.
(7.) Douglas N, Plugge E, Fitzpatrick R. The impact of imprisonment
on health: What do women prisoners say? J Epidemiol Community Health
2009;63(9):749-54.
(8.) Lindquist CH, Lindquist CA. Health behind bars: Utilization
and evaluation of medical care among jail inmates. J Community Health
1999;24(4):285 303.
(9.) Sung H-E, Richter L. Contextual barriers to successful reentry
of recovering drug offenders. JSubst Abuse Treat 2006;31(4):365-74.
(10.) Schnittker J, John A. Enduring stigma: The long-term effects
of incarceration on health. J Health Soc Behav 2007;48(2):115-30.
(11.) Martin RE, Murphy K, Chan R, Ramsden VR, Granger-Brown A,
Macaulay AC, et al. Primary health care: Applying the principles within
a community-based participatory health research project that began in a
Canadian women's prison. Global Health Promot 2009;16(4):43-53.
(12.) Vollman AR, Anderson ET, McFarlane JM. Canadian Community as
Partner: Theory and Practice in Nursing. Philadelphia, PA: Lippincott
Williams & Wilkins, 2007;576.
(13.) Green LW, Kreuter MW. Health Program Planning. New York, NY:
McGraw Hill, 2005;458.
(14.) Martin RE, Murphy K, Hanson D, Hemingway C, Ramsden V, Buxton
J, et al. The development of participatory health research among
incarcerated women in a Canadian prison. Int J Prisoner Health
2009;5(2):95-107.
(15.) L.I.N.C. Society of British Columbia.
http://www.lincsociety.bc.ca/ (Accessed July 2011).
(16.) Women in2 Healing. http://www.womenin2healing.org/ (Accessed
July 2011).
(17.) Fournier P, Potvin L. Participation communautaire et
programmes de sante: les fondements du dogme. Sciences Sociales et Sante
1995;13(2):39-58.
Received: March 22, 2012
Accepted: July 18, 2012
Claire M. O'Gorman, RN, BScN, MPH, [1] Megan Smith Martin,
BSc, [2] John L. Oliffe, RN, MEd, PhD, [3] Carl Leggo, PhD, [4] Mo
Korchinski, [5] Ruth Elwood Martin, MD, FCFP, MPH [6]
Author Affiliations
[1.] School of Population and Public Health, University of British
Columbia, Vancouver, BC
[2.] Collaborating Centre for Prison Health and Education,
University of British Columbia, Vancouver, BC
[3.] School of Nursing, University of British Columbia, Vancouver,
BC
[4.] Department of Language and Literacy Education, University of
British Columbia, Vancouver, BC
[5.] Women in2 Healing, Vancouver, BC
[6.] Department of Family Practice, University of British Columbia,
Vancouver, BC
Correspondence: Dr. Ruth Martin, School of Population and Public
Health, University of British Columbia, 2206 East Mall, Vancouver, BC
V6T 1Z3, Tel: 604-822-2496, Fax: 604-822-4994, E-mail:
ruth.martin@familymed.ubc.ca
Table 1. Representative Quotations From Participant Prison Leavers to
Illustrate Themes and Subthemes
Share Knowledge
"Knowledge is power to a person"; "It's about education"
Mentorship and Peer Education "If I had somebody who I knew
went through everything that
I went through it would be
more inspiring."
"It's by telling our own stories."
Mutual Learning "It's equal sharing of information."
Support Self-Advocacy
"Her experience taught me to push and push... and not stop pushing."
System Complexities "Most people who get out of jail
have no idea that they need a
medical card."
"Those guys trying to get
disability, it's straight up
hell."
Judgement and Stigmatization "It's supposed to be safe,
nonjudgemental... and healthcare
providers are not that way."
"When they found out I had been in
prison, it's like a switch went
off."
"People have that fear of being
judged or being criticized for
their lifestyle choices."
Empowerment "Who is going to listen to me? I'm
just a goddamn drug addict and a
criminal."
"Then when they make decisions for
themselves, they're empowered."
"People just coming out of prison
aren't confident."
Strengthen Relationships
"Having people who love me, and people who I love..."
Trust "They don't trust doctors. There's
been no reason to trust them."
"It's being open, and building
Hope "When people are feeling hopeless,
how are they supposed to know what
a health goal is?"
"I wouldn't give a shit about my
health if I didn't have hopes and
dreams for my future."
Connections "There is something different about
having someone to chat with and
another human being there."
"It would be helpful to have
somebody, a contact person."
"People sharing hope and their
experience of how they broke the
cycle."
