Women’s Voices Women’s Lives: Low Income, Aging, Black Women Living with

HIV InfectionRosanna DeMarco, PhD, RN, PHCNS-BC, APHN-BC, ACRN, FAAN

Chair & Professor, CNHS, Department of Nursing

University of Massachusetts Boston

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A Program of Research: Outcomes of Interest

Healthcare Adherence Relational Self-Advocacy

Stigma

LOCAL AND GLOBAL PARTNERSHIPS

HIV AIDS Bureau, MDPHDorchesterCambridgeSpringfield

NicaraguaVietnamJamaicaBurkina FasoSouth AfricaMilawi

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

Take Action

Collect analyze

Reflect

Study and Plan

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…….meditation2. Prompt…….4 film clips,

Women’s Voices Women’s Lives©Testing PositiveStigmaGender and Safe Sex NegotiationSurvivorship

3. Write

Research Question

Does structured writing using the AWA method effect change in relational self-silencing, 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 groupsT1, 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)DemographicsSilencing the Self (Jack, 1991; Jack & Dill, 1992)Health Adherence (Medical Outcomes Survey;

DiMatteo, Hays, Sherbourne, 1992 )Stigma Scale (Berger, Ferrans, & Lashley, 2001)

Mixed Methods AnalysisDescriptive, Dependent sample T-tests, GLM

Repeated Measures ModelContent 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 Evidence-Based 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. 343-362). 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), 32-39.

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.