Participatory Research With Incarcerated Women

1
Participatory Research With Incarcerated Women
Their Children

• Hahn School of Nursing and Health Sciences
• University of San Diego
• San Diego, California, USA
• March, 2005

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• 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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California
San Diego County
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Acknowledgements

• 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

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Women in the U.S. Correctional System

• Anastasia Fisher, RN, DNSc
• Diane Hatton, RN, DNSc

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International Council of Nurses

• Prisoners and detainees have the right to health
  care and humane treatment

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U. S. Constitution

• Eighth Amendment of the US Constitution
• Indifference to medical needs as cruel and
  unusual punishment

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Background

• 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

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Women Offenders

• Historically unnoticed as a research concern
• Small percentage compared to men
• In predominantly male systems
• Non-violent crimes
• Shorter periods of imprisonment

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Characteristics 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

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Characteristics of U.S. Incarcerated Women (cont)

• High incidence of prostitution
• Growing subpopulation of pregnant and postpartum
  inmates

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Health 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

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Health Concerns (cont)

• Other chronic diseases
• Physical asthma, hypertension, diabetes
• Mental schizophrenia, PTSD, bipolar disorders,
  major depression, substance abuse

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Social 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

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Children of Incarcerated Women Health
Developmental Concerns

• Susan Instone, DNSc, RN, CPNP

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Who 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

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Who Are These Children?

• Mostly children of color
• African Americans nine times more likely than
  white
• Hispanic/Latinos three times more likely than
  white

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Who 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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Concerns 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

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Where 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

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Benefits 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

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Risks 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

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Developmental Concerns

• Infants
• toddlers
• Attachment disorders

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Developmental Concerns

• Preschoolers
• Behavioral regression, separation anxiety, guilt
  over causing arrest, fears mothers will die
• Delay in cognition (communication problem
  solving) other domains of development

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Developmental Concerns

• Adolescent School Failure
• Absenteeism
• Suspensions
• Failing grades
• Drop out rates 3 times higher

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Developmental Concerns

• Internalizing problems in school-age children
  adolescents
• Anxiety
• Guilt
• Depression
• Withdrawal
• Hypervigilance
• Nightmares
• Restlessness,
• Poor impulse control

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Developmental 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

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U.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)

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U.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)

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Implications 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

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Implications 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

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Research 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

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Outside or Inside the Margins? Research with
Incarcerated Women

• Mary-Rose Mueller, PhD, RN

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Recap 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

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Women in contact with the criminal justice
system

• Those held in locked facilities
• Those in and out of detention
• Those on parole
• Those on probation

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Knowledge 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

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Regulation 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

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Historical 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

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Historical 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

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Initial Vulnerable Groups

• The ill, terminally ill, comatose
• Mentally disabled, immature
• Infants, children
• Racial, ethnic minorities
• Incapacitated Patients
• Welfare Patients
• The Institutionalized
• Prisoners

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Vulnerable Groups Added

• Pregnant Women
• People with HIV/AIDS
• Human fetuses, neonates

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Historical 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

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• 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

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Present Context

• Today, the Federal government regulates human
  research through three basic mechanisms
• Institutional Assurances
• Institutional Review Boards
• Informed Consent

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Issues, 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

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• 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?

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Possible 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

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Why Participatory Research?

• Diane C. Hatton, RN, DNSc
• Cheryl Ahern-Lehmann, RN, PhD, CANP

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Purpose 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

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What is Participatory Research?

• Participatory action research
• Participatory research
• Action research
• Mutual inquiry
• Feminist participatory research

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Core Principles

• Community members researchers work together
• Systems and community development
• Intent is to empower participants
• Balance research and action

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Community 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

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Background

• Learning and knowledge in universities
• Collective learning organizations

Levin Greenwood, 2002, p. 103
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Levin 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

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Theoretical Underpinnings

• Challenges traditional positivist views of
  science
• Asks
• Who participates?
• Where does the power lie?

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Research 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

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Significance of Our Work

• Only a few studies have explored the health
  concerns of incarcerated women and/or their
  children

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Local Statistics
http//www.sdsheriff.net/jp/barchart.asp
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Characteristics of Sample
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Findings

• Critical times
• Vulnerabilities
• Mundane health problems, common to women

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Challenges

• Front-end work
• Goals of community members vs. funding agencies
• Power relations

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Power 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.

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In Summary..
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Interconnectedness between Method and Jail
Setting

• Anastasia Fisher, RN, DNSc

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Purpose

• 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

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Definition 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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Jails

• 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

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• 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).

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Jails

• 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).

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Summary Jail Characteristics

• Heterogeneous populations
• Transient
• Containment vs. Rehab focused
• Community-based
• Constructed for and administered by men
• Closed to outsiders

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Challenges To Conducting Research With Women In
Jail

• Getting In
• Being In
• Following after Release

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Getting 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

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Getting 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?

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Being 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.

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Following-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

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Further Challenges to Research

• Challenges to recruitment
• Unpredictable inmate activities
• Overcrowding
• Inmate punishment
• Inmate grapevine
• Challenges to follow-up
• Early/sudden release from jail

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Strategies

• 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

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Strategies (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

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In summary
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