Title: Participatory Research With Incarcerated Women
1Participatory Research With Incarcerated Women
Their Children
- Hahn School of Nursing and Health Sciences
- University of San Diego
- San Diego, California, USA
- March, 2005
2- Welcome Introduction
- Dr. Mary-Rose Mueller
- Women in the US Correctional System
- Drs. Anastasia Fisher and Diane Hatton
- Children of Incarcerated Women
- Dr. Susan Instone
- Outside or Inside the Margins?
- Dr. Mary-Rose Mueller
- Why Participatory Research?
- Dr. Diane Hatton
- Interconnectedness of Method and Jail
- Dr. Anastasia Fisher
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4California
San Diego County
5Acknowledgements
- Dr. Cheryl Ahern-Lehmann
- Associate Clinical Professor
- Dr. Cynthia Connelly
- Associate Professor
- Doctoral Students
- K. Sue Hoyt
- Min Park
- Kim Moreno
- U.S.D. Faculty Research Award
- Participant Community Organizations
Incarcerated Women
6Women in the U.S. Correctional System
- Anastasia Fisher, RN, DNSc
- Diane Hatton, RN, DNSc
7International Council of Nurses
- Prisoners and detainees have the right to health
care and humane treatment
8U. S. Constitution
- Eighth Amendment of the US Constitution
- Indifference to medical needs as cruel and
unusual punishment
9Background
- Dramatic increase in female inmates in the US
since 1995, 5.2/yr. - Prison 100,102
- Jail 81,650
- Probation 937,020
- Parole 100,698
10Women Offenders
- Historically unnoticed as a research concern
- Small percentage compared to men
- In predominantly male systems
- Non-violent crimes
- Shorter periods of imprisonment
11Characteristics of U.S. Incarcerated Women
- Multiple acute and chronic co-occurring health
problems - Majority poorly educated, impoverished
backgrounds, unable to access routine health care - Lives steeped in physical and sexual violence
12Characteristics of U.S. Incarcerated Women (cont)
- High incidence of prostitution
- Growing subpopulation of pregnant and postpartum
inmates
13Health Concerns of Soon-to-Be-Released Women
- High incidence communicable disease
- - Hepatitis B C
- TB
- HIV/AIDS
- Sexually Transmitted Diseases
- Methicillin-Resistant S. Aureus
- infections
14Health Concerns (cont)
- Other chronic diseases
- Physical asthma, hypertension, diabetes
- Mental schizophrenia, PTSD, bipolar disorders,
major depression, substance abuse
15Social Health Concerns
- Report high rates of abuse as children
- 27 report having been raped
- Housing needs, homelessness
- Poverty
- Limited education
- Mothers to 1.3 2 million children
16Children of Incarcerated Women Health
Developmental Concerns
- Susan Instone, DNSc, RN, CPNP
17Who Are These Children?
- About 2 million in the U.S, 90 under 12
- 98 increase between 1991 1999
- About 10 million have had at least one parent
incarcerated or arrested during their lifetime
18Who Are These Children?
- Mostly children of color
- African Americans nine times more likely than
white - Hispanic/Latinos three times more likely than
white
19Who Are Their Mothers?
- Poorly educated, single, young women of color
- Impoverished
- History of chemical dependency
- Victims of physical, sexual, emotional violence
- 25 pregnant or give birth during incarceration
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21Concerns Incarcerated Mothers
- Separation from their children
- Minimal visitation due to distance
- Awareness of their childrens suffering
- Extreme guilt, anxiety, sadness
- Lack of parenting skills
- Fear of losing custody
22Where Are These Children?
- 70 with grandparents other relatives
- Mostly maternal grandmothers gt 50
- Informal custody
- Lack of financial social support
- 30 in foster care
- Frequent disruption in caregivers
23Benefits to Childrens Health
- Increased birth weight due to shelter regular
meals provided in jail - Incarceration is not the answer to improving
neonatal outcomes of babies born to at-risk women
24Risks to Childrens Health
- Initial terror, shock, bewilderment at time of
arrest - Enduring trauma of being abandoned displaced
- Feelings of loneliness, anger, sadness,
resentment, guilt - Fear of stigma
- Disorders of eating and sleeping
25Developmental Concerns
- Infants
- toddlers
- Attachment disorders
26Developmental Concerns
- Preschoolers
- Behavioral regression, separation anxiety, guilt
over causing arrest, fears mothers will die - Delay in cognition (communication problem
solving) other domains of development
27Developmental Concerns
- Adolescent School Failure
- Absenteeism
- Suspensions
- Failing grades
- Drop out rates 3 times higher
28Developmental Concerns
- Internalizing problems in school-age children
adolescents - Anxiety
- Guilt
- Depression
- Withdrawal
- Hypervigilance
- Nightmares
- Restlessness,
- Poor impulse control
29Developmental Concerns
- Externalizing problems in school-age children
adolescents - Anger
- Aggression, assault
- Post Traumatic Stress Disorder (PTSD)
- Substance abuse
- Lying, stealing
- Conduct disorders
- Sexual promiscuity
- Incarceration
30U.S. Models of Intervention
- Strengthening Families Program (Kumpfer,
Molgaard, Spoth, 1996) - The Phoenix Program (SAMHSA Jail Diversion Study,
1997) - Girl Scouts Beyond Bars for incarcerated Maryland
mothers daughters 7-17 (Block Potthast,
1998)
31U.S. Models of Intervention
- TAMARs (Trauma, Addictions, Mental health And
Recovery) Children (Gillece, 2002) - Ten week parent training therapy for incarcerated
fathers children 3-7 (Landreth Lobaugh, 1998)
32Implications for Research
- Few studies focused on impact of maternal
incarceration on children - Use of small convenience samples, inadequate
comparison groups - No longitudinal studies on long-term psychosocial
adjustment - Most research based upon self-reporting of
incarcerated parents
33Implications for Research
- No studies document the effects of maternal
incarceration on childrens physical health - Few studies used standardized measures for
childrens psychosocial adjustment - Lack of direct observations interviews with
children - Few studies about childrens coping resilience
34Research Recommendations
- Guided by developmental, interactional,
ecological perspectives - Grounded in understanding of child adolescent
development - Multi-disciplinary, including researchers from
social service criminal justice communities - Ethically respectful
35Outside or Inside the Margins? Research with
Incarcerated Women
- Mary-Rose Mueller, PhD, RN
36Recap Clinical Social Characteristics of These
Women
- Growing numbers nationally
- Likely to be pregnant /or mothers
- High rates of HIV and HCV infection
- History of some form of abuse
- High rates of mental, cognitive impairment
- Racial ethnic minorities over-represented
- Likely to be from lower socioeconomic ranks
- Limited access to health care, medications
37Women in contact with the criminal justice
system
- Those held in locked facilities
- Those in and out of detention
- Those on parole
- Those on probation
38Knowledge Gaps
- Recognition of need for research
- Recognition that research on women in contact
with criminal justice system and their children
is issue-laden - Status as a concept for thinking through human
subject issues and questions -
39Regulation of Human Subject Research in America
- Historical overview
- Dr. Henry Beechers 1966 NEJM article on
questionable research practices led to
development of Federal guidelines for Public
Health Service-funded research - Led to establishment of Institutional Review
Boards, peer-review of research proposals,
procedures for obtaining consent
40Historical Overview (cont)
- Media exposure of Public Health Service-sponsored
Tuskegee syphilis study led to passage of the
National Research Act of 1974, which - Expanded scope and composition of Institutional
Review Boards - Established Presidential Commission for the
Protection of Human Subjects of Biomedical and
Behavioral Research
41Historical Overview (cont)
- Presidential Commission issued the Belmont Report
in 1979 - Established principles of human subject research
- Respect for persons
- Beneficence
- Justice
- Assigned certain groups to status of
vulnerable, in need of protection
42Initial Vulnerable Groups
- The ill, terminally ill, comatose
- Mentally disabled, immature
- Infants, children
- Racial, ethnic minorities
- Incapacitated Patients
- Welfare Patients
- The Institutionalized
- Prisoners
43 Vulnerable Groups Added
- Pregnant Women
- People with HIV/AIDS
- Human fetuses, neonates
44Historical Overview (cont)
- The National Research Act also issued Regulations
Governing Research Conduct (45 Code of Federal
Regulations 46) The Common Rule - Subsequently revised, renamed Department of
Health and Human Services Regulations for the
Protection of Human Subjects -
45- Added protections for vulnerable populations,
including Subpart C (prisoners) - Subpart C is important to our research because
it - - Designates status of prisoners
- - Specifies Institutional Review
Board - composition
- - Delineates additional human subject
- protections
- - Defines prisoner phenomena that can
be - researched with federal funding
46Present Context
- Today, the Federal government regulates human
research through three basic mechanisms - Institutional Assurances
- Institutional Review Boards
- Informed Consent
47Issues, Questions to Consider
- Planning research on/with women in contact with
the criminal justice system and their children is
complicated because many women fall into more
than one vulnerable status designation - mentally infirm
- pregnant
- poor health affected with HIV/AIDS
- impoverished
- racial and ethnic minorities
-
48- Some questions that arise in planning our
research in the context of the federal research
regulations and their status designations for
prisoners - - Are women on probation and parole also
prisoners? - - Are pregnant incarcerated women doubly
vulnerable? - - How can we obtain informed consent on children
if mothers are incarcerated? - - Do research participants need to be reconsented
upon release from detention?
49Possible Consequences of Federal Regulations
- May discourage researchers from designing and
implementing studies - May render womens health and social hardships
invisible - May lead to the implementation of non-empirical,
theoretically-driven policies and practices - May lead to further social stratification and
marginalization for incarcerated women their
children -
50Why Participatory Research?
- Diane C. Hatton, RN, DNSc
- Cheryl Ahern-Lehmann, RN, PhD, CANP
51Purpose of Paper
- Working definition of participatory research
- Background for these methods
- Community-Based Participatory Research (CBPR) and
complex health problems - Our work origins, progress, and challenges
52What is Participatory Research?
- Participatory action research
- Participatory research
- Action research
- Mutual inquiry
- Feminist participatory research
53Core Principles
- Community members researchers work together
- Systems and community development
- Intent is to empower participants
- Balance research and action
54Community Based Participatory Research (CBPR)
- researchers and community participants seek
to collaborate as full partners in every phase of
the research process - Metzler, M. M., Higgins, D. L., Beeker, C. G.,
Freudenberg, N., Lantz, P. M., Senturia, K. D.,
et al. (2003). Addressing urban health in
Detroit, New York City, and Seattle through
community-based participatory research
partnerships. Am J Public Health, 93(5),p. 803
55Background
- Learning and knowledge in universities
- Collective learning organizations
Levin Greenwood, 2002, p. 103
56Levin Greenwood, 2002
- Participatory research
- Addresses real life problems
- Context for researchers and participants to
co-generate knowledge - Includes local diversity of experience
- Knowledge leads to social action
- Validity measured by whether inquiry solves
problems or increases control over local lives
57Theoretical Underpinnings
- Challenges traditional positivist views of
science - Asks
- Who participates?
- Where does the power lie?
58Research with Complex Health and Social Problems
- Traditional outside expert approaches ill
suited for these problems - CBPR A promising approach for women with a
history of incarceration
59Significance of Our Work
- Only a few studies have explored the health
concerns of incarcerated women and/or their
children
60Local Statistics
http//www.sdsheriff.net/jp/barchart.asp
61Characteristics of Sample
62Findings
- Critical times
- Vulnerabilities
- Mundane health problems, common to women
63Challenges
- Front-end work
- Goals of community members vs. funding agencies
- Power relations
64Power Relations
- Dichotomous thinking
- - Researchers vs. community
-
- Tyranny of the group
- Cooke, B., Kothari, U. (2001). The case for
participation as tyranny. In B. Cooke U.
Kothari (Eds.), Participation The New Tyranny?
(pp. 2-15). New York Zed Books.
65In Summary..
66Interconnectedness between Method and Jail
Setting
- Anastasia Fisher, RN, DNSc
67Purpose
- Define jails their unique characteristics
- Identify challenges to conducting research in
this setting - Getting in
- Being in
- Following up
- Share strategies for managing the challenges
68Definition of Jail
- A jail is a locally administered confinement
facility authorized to hold persons awaiting
adjudication and/or those committed after
adjudication to serve sentences of one year or
less. - U.S. Dept. of Justice, Bureau of Justice
Statistics. NATIONAL JAIL CENSUS, 1993 Computer
file. Conducted by the U.S. Dept. of Commerce,
Bureau of the Census. ICPSR ed. Ann Arbor, MI
Inter-university Consortium for Political and
Social Research, 1996.
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70Jails
- receive individuals pending arraignment hold
while awaiting trial, conviction, or sentencing - readmit probation, parole, and bail-bond
violators, absconders - detain juveniles pending transfer to juvenile
authorities - hold mentally ill persons pending movement to
health facilities
71- hold individuals for the military, for protective
custody, for contempt, for courts as witnesses - release convicted inmates to community on
completion of sentence - transfer inmates to Federal, State, or other
authorities due to crowded facilities - sometimes operates community-based programs as
alternatives to incarceration - (BJS, Profile of Jail Inmates, 2002, July 2004,
pp.2).
72Jails
- 74 are run by counties
- 22 are run by cities
- 4 are managed through joint agreements between
a city and a county - Operation of a county jail is assigned to county
sheriff - (Steadman, et al pp.22).
73Summary Jail Characteristics
- Heterogeneous populations
- Transient
- Containment vs. Rehab focused
- Community-based
- Constructed for and administered by men
- Closed to outsiders
74Challenges To Conducting Research With Women In
Jail
- Getting In
- Being In
- Following after Release
75Getting In
- Researcher considerations include
- Front end work
- Administratively complex, time consuming
- Building community alliances
- Working with your IRB
- Passing the background check
- Researcher
- Peer Advocates
76Getting In (cont)
- Jail considerations include
- Does research plan include benefit to the
inmates? - Is the privacy of inmates compromised?
- Are researchers safe?
- Is the security of inmates/custody staff
compromised? - Will study embarrass authorities?
77Being In
- Following the rules
- Developing procedures that fit the jail schedule
- Working hours that fit the jail
- Accessing interacting with inmates touching,
refreshments, reliance on custody personnel - Wearing appropriate attire
- Supervising the inmates
- Mullen, P.D., Cummins, A. G., Velasquez, M.M.,
Sternberg, K. V. Carvajal, R. C. (2003). Jails
as important but constrained venues for
addressing womens health. Family Community
Health, 26(2), 157-168.
78Following-up
- Challenges locating subjects for follow-up
- Dont want to be reminded of jail
- Change in perspective once released
- Return to life-style
- Homelessness, transience
79Further Challenges to Research
- Challenges to recruitment
- Unpredictable inmate activities
- Overcrowding
- Inmate punishment
- Inmate grapevine
-
- Challenges to follow-up
- Early/sudden release from jail
-
-
80Strategies
- Working with prisoner advocates
- Working closely with jail staff/employees
- Associating the research project with established
well-regarded unit within the jail, e.g. the
medical clinic - Front-loading intervention relationship
development
81Strategies (cont)
- Limiting eligibility to those with at least two
locators-- phone numbers and a commitment to stay
in county - Providing a survival kit to participantsbus
tokens, change for the phone, meal cards - Setting aside in budget for unanticipated costs
82In summary
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