Women’s Voices Women’s
Lives: Low Income, Aging,
Black Women Living with
HIV Infection
Rosanna DeMarco, PhD, RN, PHCNS-BC, APHN-BC, ACRN, FAAN
Chair & Professor, CNHS, Department of Nursing
University of Massachusetts Boston
A Program of Research: Outcomes of Interest
Healthcare Adherence
Relational Self-Advocacy
Stigma
LOCAL AND GLOBAL PARTNERSHIPS
HIV AIDS Bureau, MDPH
Dorchester
Cambridge
Springfield
Nicaragua
Vietnam
Jamaica
Burkina Faso
South Africa
Milawi
Genesis from Philosophy, Theory,
and Practice
Sandra Harding
 Is there a scientific method that eliminates social bias?
 Knowledge based on experience but women’s experience
is different
 Is feminist research biased? (perhaps excluding
others….Black women, men……)
 Who’s Science, Who’s Knowledge
Critical Social Theory
 Jurgen Habermas (Frankfurt School;
Social Research)
 Types of Inquiry
 Empirical-analytic: technical (control, objectify)
 Historical-hermeneutic: practical (meaning)
 Critical: self-reflection and emancipation
Public Health Practice
 Capacity Building
 Coalition Building
 Engagement of Community of Concern
WHAT DO SCHOLARS SAY:
 Gilligan, In a Different Voice
 Miller, The Self-In-Relation
 Puka, Conscious Silencing
 Keen, Oppression
 Roberts, Oppressed Group Behaviors
 Jack!!! (Relational Theory of Silencing the Self)
Silencing the Self (Jack, 1991)
The Externalized Self
Judging the Self by
External Standards
Care as Self-Sacrifice
Securing attachments by
putting the needs of others
before the self
Silencing the Self
Inhibiting One’s Own Self
Expression and Action to Avoid
Conflict and Possible Loss of
Relationship
The Divided Self
Presenting an Outer Compliant
Self to Live Up to the Role
Imperatives While the Inner Self
Grows Angry and Hostile
CBPR: Community-Based
Participatory Research
 CBPR is a methodology (a perspective or
belief in the way to carry out research)
that counters oppression in the research
process as well as in the lived experience
of the participants
 Participants have a key role in:
 Setting up the agenda
 Data Gathering
 Analysis
 Controlling use of the Outcomes
CBPR
 Strategies of creating
knowledge that is
relevant to community
needs and interests
(Gibson et. al., 2001)
 Design for research
questions do not come
from the academic
setting but from
reflection
 Roles in the research are
collaborative
Study and
Plan
Take
Action
Collect
analyze
Reflect
Prevalence and Relevance
 Of the 126,964 women living with HIV/AIDS in US, 64%
are black (CDC, 2012)
 HIV infection is the 3rd and 4th leading cause of death
for black women aged 35–44 years and 45-54 years of
age respectively (CDC, 2012).
 MASSACHUSETTS: 52% of ALL LIVING WITH HIV
INFECTION ARE OVER 50 YEARS OLD.
“Black”
 individuals who identify as African
American (considered person born in
the US who are descended from
members of the black community living
in the US since the era of black
slavery) and
 other black individuals including
persons born in African, the Caribbean
basin and parts of Central and South
American (MDPH, AIDS Bureau, 2013).
Building Community Partnerships
and Trust: Sistah Powah
 1998-2007: Healing Our Community Collaborative (HOCC):
Testing validity of STSS items
 Women of Color AIDS Council/Women Connecting and
Affecting Change (WCAC)
 2004- Women’s Voices Women’s Lives©
 Women, Teen, Provider versions and curricula
 Vietnamese 2007
 Spanish 2009

2007- present: Sistah Powah Intervention (SPI) and
Community Group
Film
 Winner of American
Academy of Nursing Media
Award
 Distributed in schools of
public health, nursing, and
ASO’s across USA
 Berkina Faso, 2006
 South Africa, 2007
 Jamaica, 2010
 Milawi, 2011
 Vietnam, 2012
 Nicaragua,2012
Purpose and Intervention
 Evaluate the effect of peer-led structured writing
prevention intervention on Black women living with HIV
infection
 Amherst Writers as Artists Method (Schneider)
 1. Preparation…….meditation
 2. Prompt…….4 film clips,
Women’s Voices Women’s Lives©
Testing Positive
Stigma
Gender and Safe Sex Negotiation
Survivorship
 3. Write
Research Question
 Does structured writing using the AWA
method effect change in relational selfsilencing, health care adherence (condom
and safe sex practice behaviors), and
stigma over time in comparison with usual
care support group
Gaps Addressed by the Study
 Past Publications
 Participants came
from the same
clinical setting
 ? External validity
 ? Mixed efficacy with
peer-led approaches
 Retention/Attrition
Issues
 This Study
 Participants from a
variety of treatment
centers (external
validity)
 Peer-Led
 Directed exclusively
to aging low income
Black women
 Mixed Methods
Approach
Participants/Groups
Total Sample =
110
Intervention
(I): n = 56
Usual Care
(UC): n 54
9 sets of groups
T1, T2
4-6 women
randomized to each
group
I and UC met at
same period of time
on different
evenings
 Sample retention = 85.5%
Method
Measures (paper/pencil, self-report)
 Demographics
 Silencing the Self (Jack, 1991; Jack & Dill, 1992)
 Health Adherence (Medical Outcomes Survey;
DiMatteo, Hays, Sherbourne, 1992 )
 Stigma Scale (Berger, Ferrans, & Lashley, 2001)
 Mixed Methods Analysis
 Descriptive, Dependent sample T-tests, GLM
Repeated Measures Model
 Content Analysis (Miles and Huberman, 1994).
Sample
 Demographics (n=110)
 Age: M=44.6; R= 32-65; SD=8.05
 Education: 66% (n=73) HS; 27% (n=30) some HS
 Marital Status: 40% (n=44) not married/partnered;
25% (n=27) married/partnered
 Sexually Active: 60% (n=71)
 STI History: Chlamydia 27%; GC 30%; Syphilis13%;
Herpes 30%
 Pregnancies: M=4, SD=3.00
 Sex for Money: (62%); Food (12%); Drugs (40%);
Alcohol (23%)
Outcome Measures and Findings
 Considerations
 Brief Description
 Results
Silencing the Self Scale Items
(STSS) (Jack, 1991; Jack & Dill, 1992)
1. I find it is harder to be myself when I am in relationships then when I am
on my own.
2. I feel I have to act in a certain way to please my partner.
3. When my partner’s needs or opinions conflict with mine, rather than
asserting my own point of view I usually end up agreeing with him
4. When I am in a close relationship, I lose my sense of who I am
5. I feel that my partner does not know my real self
6. I think it’s better to keep my feelings to myself when in conflict with those
of my partner
7. In a close relationship, I don’t usually care what we do as long as the other
person is happy
8. I try to bury my feelings when I think they will cause trouble in my close
relationships
*Delphi Study of 10 women over three rounds (2006)
**FA: two factor structure [pleasing others; hiding/burying feelings]; Cronbach Alpha=.90 (current study)
T-tests (n=110) T1-T2
 Mean difference = 2.767, p = 0.013 in the intervention
group
 No differences in the comparison group (mean difference
= 0.373, p = 0.723
HIV (MOS)
 Derived from recommendations from the United States Public Health
Service Guidelines for the Prevention of Opportunistic Infections in
Persons with HIV (Kaplan, Masur, Holmes, et al., 1995).
 Components
 Able to do what healthcare provider suggests?
 Keep Routine appts/Prevention appts /specialists
 Behaviors
 Smoke cigarettes/Try to cut down
 Drink Alcohol/Try to cut down
 Use condoms when having sex
 Use safer sex practices as a substitute for unprotected sex
 IVDU (only one person in Usual Care/Control Group
 Medications
 HIV, opportunistic infections, others
 How often taken (1-10)*
 *mean higher than 8.8/SD 2.42 over time
T-tests (n=109) T1-T2
 Frequency response to the question, "how often do you
use condoms when having sex" was higher for the
intervention group (mean difference = 1.02, p = .04).
 For the comparison group, the frequency in condom use
from the two time points was not statistically significant
(mean difference = -0.97, p = 0.12).
Stigma
 Negative Self Image
 Disclosure Concerns
 Personal Stigma
 Concern for Public Attitudes
 40 items, Likert 1-4, strongly disagree to
strongly agree
? What About Time Three
 Absence of intervention
 Back to Baseline
Qualitative Data
 Data (themes) from writing and end of program evaluation
indicates other influences affecting outcomes
through content analysis (Miles & Huberman)
 Addiction Recovery
 Trauma (CSA; IPV)
 Mental Health (Depression; Bipolar; Personality Disorders)
 Sustained issues of lack of money & job skills
 Women asking for longer program (peer support) and skill
building component
 Very positive about writing “helped me focus”
 Would do this without research reimbursement
DEBI: Dissemination of EvidenceBased Interventions
 Prevention Research Synthesis (PRS) Efficacy Criteria,
Community Level Interventions (Rigor)
 Prospective
 Comparison Arm (50 each arm at least)
 Minimize Selection Bias: Systematic Selection for
community characteristics
 Randomize to groups
 Follow-up Assessment > 3 months
 70% Retention Rate
 Analysis based on alpha of .05 or more stringent
 Positive Intervention Effect
 No Harm
Continuing Program of Research
 RCT comparing writing with spoken word
 Continuing peer-led approach (Dissemination)
 Exploration related to brain function (qEEG)
hippocampus, amygdala and memory processing
with cognitive restructuring during structured
writing
 Sistah Powah Experience
Thanks
 CDC HIV/AIDS Prevention (HAP) & MA Dept of Health, Bureau of
Infectious Diseases
 Norbert Hardner Foundation
 Women of Color AIDS Council, Inc/Multicultural AIDS Coalition
(MAC)
 Sistah Powah
Publications
 DeMarco, R.F. & Chan, K. (In press, 2012). Structured writing: An
effective intervention for aging low income HIV positive Black
women. American Journal of Health Promotion.
 DeMarco, R.F. & Lanier, L.R. (In press,2012). The Concept of
"Silencing the Self" in Low Income, Aging, HIV-Infected African
American Women: A Ten-Year Community-Based Participatory
Program of Research with Results. Journal of Association of Nurses
in AIDS Care.
 DeMarco, R.F., Bradley Springer, L., Gallagher, D., Jones, S.G., &
Visk, J. (2012). Recommendations and reality: Perceived patient,
provider, and policy barriers to implementing routine HIV-screening
and proposed solutions. Nursing Outlook, 60(2), 72-80.
 DeMarco, R. (2010). Supporting voice in women living with
HIV/AIDS. In D. Jack & A. Ali (Eds.), Cultural Silencing the self
across cultures: Depression and gender in the social world (pp. 343362). New York: Oxford University Press.
Publications
 DeMarco, R. F. & Stokes, C. (2010). Midlife Black Women Living
with HIV/AIDS in the United States: A Treatment Strategy Using
Peer-Led, Structured Writing in a Group with Global Possibilities
Treatment Strategies-AIDS.
http://viewer.zmags.com/publication/d4b7caf8#/d4b7caf8/1.
 DeMarco, R. & Minnich, C.A. (2007). Men’s experiences viewing an
HIV/AIDS prevention education
film by and for women.
American Journal of Men’s Health, 1 (3), 183-189.
 Norris, A.E. & DeMarco, R. (2005). The experience of African
American women living with HIV creating a prevention film for
teens. Journal of the Association of Nurses in AIDS Care, 16(2), 3239.
 Norris, A.E. & DeMarco, R. (2004). The mechanics of conducting
culturally relevant HIV prevention research with Haitian American
adolescents: Lessons learned. Journal of Multicultural Nursing and
Health,11(1), 69-76 .
Publications
 DeMarco, R., & Norris, A.E. (2004). Women’s voices
women’s lives: A Web-Based HIV prevention film project. J.
V.M. Welie & J. Lee (Eds.). Jesuit health sciences and the
promotion of justice: An invitation to a discussion.
Milwaukee, WI: Marquette University Press.
 DeMarco, R. & Norris, A. (2004). Culturally Relevant HIV
Interventions: Transcending Ethnicity. Journal of Cultural
Diversity, 11(2), 65-68.
 DeMarco, R., & Johnsen, C. (2003). Taking action in
communities: Women living with HIV lead the way. Journal
of Community Health Nursing, 20 (1), 51-62.
 DeMarco, R. & Johnsen, C. (2002).Vulnerable populations:
Women living with HIV/AIDS. In E.A. Mahoney & J.K. Shaw
(Eds.) HIV/AIDS Nursing Secrets. Philadelphia, PA: Hanely
& Belfus, Inc.
Publications
 DeMarco, R., Lynch, M.M., & Board, R. (2002). Mothers
who silence themselves: Clinical implications for women
living with HIV/AIDS and their children. Journal of
Pediatric Nursing, 17 (2), 89-95.
 *DeMarco, R., Johnsen, C., Fukuda, D., &
Deffenbaugh, O. (2001). Content validity of a scale to
measure silencing and affectivity among women living
with HIV/AIDs. Journal of Association of Nurses in AIDS
Care (JANAC), 12 (4), 49-60.
 *DeMarco, R.F., Miller, K., Patsdaughter, C., Grindel, C.
& Chisholm, M. (1998). From silencing the self to action:
Experiences of Women Living with HIV/AIDS. Women’s
Health Care International, 19 (6), 539-552.