# Presentation: 634182

## Developing measures of racism relevant to childbearing women

*Amani Nuru-Jeter, PhD*
*Aimee Afable-Munsuz, PhD *
*Susan Egerter, PhD *
*Marilyn Skaff, PhD *
*Paula Braveman, MD, *
*and the *
*Measures of Racism and Social Position *
*Working Group*
- December 9, 2005

**Notes:**
Good morning.  Before I get started, I’d like to acknowledge the collaborators on this project, ..., all of whom are with the Center on Social Disparities in Health at UCSF. I’d also like to acknowledge the Measures of Racism and Social Position Working Group. This group, which I’ll discuss in more detail later, is an interagency and interdisciplinary group convened to work on this project and includes partners across the San Francisco Bay area.

As a group, we’ve thought a lot about the role of measurement and about how the strength of our work lies not only on the utility of our frameworks but also on the data we employ to test those frameworks. 

The work in the area of discrimination and health has been growing at a rapid pace. However, we are still limited by the availability of psychometrically sound measures that capture the multi-dimensional nature of racial discrimination and that capture life stages and domains relevant to women of childbearing age. So while there is evidence showing that racial discrimination predicts worse health outcomes among racial minority groups; there is also evidence of non-significant effects and even protective effects. 

So the project I will describe for you today is focused on developing validated measures of racism as a tool for pregnancy outcome studies. 

## Outline

- Background
- Research objectives
- Conceptual framework
- Research methods
- Results
- Next steps
- Remaining questions

**Notes:**
So I’ll start by summarizing some of the background for the study. I’ll then move on to the research objectives, conceptual framework, and research methods. And then I’d like to spend some time discussing some of the preliminary results and talk a little bit about where we go from here.   

## US Preterm Birth Rate

***Source*****: National Center for Health Statistics, final natality data. Prepared by the March of Dimes Perinatal Data Center, 2000**

**Notes:**
This diagram depicts the US preterm birth rate by race and over time.

As most of you know, racial disparities in pregnancy outcomes represent a persistent public health problem in the US. LBW and preterm birth, alone, explain 2/3 of black infant deaths. Not surprisingly but notably troubling, blacks experience 2-3X the risk of LBW & preterm birth compared to whites. 

## Racial disparities in reproductive health outcomes

- Disparity not fully explained
- Known risk factors explain ~50% of the risk differential
- Disparity is greater at higher SES
- Role of social context
- “Eco-social” perspective (Krieger)
- Contextual factors  pregnancy outcomes (e.g., area poverty/SES, unemployment, income incongruity, racial density)
- [Perceived] racism: potential race-related stressor

**Notes:**
Despite efforts to explain this disparity, known risk factors such as age, marital status, short interpregnancy intervals, other health problems, and numerous health behaviors do not explain the burden of risk. Even more striking, is the greater disparity at higher levels of SES.

There are an increasing number of studies demonstrating an association between contextual factors, such as area-based SES and racial density, and adverse pregnancy outcomes, independent of individual-level SES; and suggesting that the experience of chronic social stress may contribute to increased pregnancy risk. 

Recent studies suggest that maternal lifetime exposure to racial discrimination may be a specific race-related stressor related to both preterm birth and LBW.

Note: recent immigrants deliver higher birthweight babies than women of the same race who were born and raised in the US despite their lower SES.

## Perceived racism and pregnancy outcomes

- ~9 studies examining relationship between perceived racism and pregnancy outcomes
- 3X higher odds of VLBW (Collins et al 2000; Collins et al 2004)
- Increased risk of preterm birth (Rosenberg et al 2000; Dole et al 2003)
- Feeling a need to protect children from racism and racism in the workplace  distress (Jackson et al 2001)
- Hypothesized: perceived racism prior to and during pregnancy  adverse pregnancy outcomes
- Other studies
- Psychosocial stress  LBW among blacks (Orr et al 1996)
- Hypothesized: racism and psychosocial factors (e.g., coping style)  adverse pregnancy outcomes (David and Collins 1991)

**Notes:**
Literature in the area of perceived racism and pregnancy outcomes is growing but still in its infancy...

~9 studies have examined the relationship between perceived racism and pregnancy outcomes, most of which show significant effects. 

One study examined a hospital-based sample of black women and showed 3-fold higher odds of infant VLBW (adj OR = 3.2; CI = 0.9-11.3) for mothers reporting discrimination during pregnancy (Collins et al 2000). These results were confirmed in a follow-up study.

Another study examined a prospective cohort study of black women in Detroit and showed a significant effect of perceived racism and increased risk of preterm birth. (Rosenberg et al 2002). 

In a related area of research, there has been work showing negative effects of perceived racism on psychosocial distress. The investigators hypothesize that perceived racism, as a form of psychosocial stress, prior to and during pregnancy may predict adverse pregnancy outcomes. 

Orr – black and white women

## Research objectives

- To better understand the range of life-course experiences of perceived racism among African-American women of childbearing age.
- To systematically develop a reliable and validated measure of perceived racism as a tool for pregnancy outcome studies.

**Notes:**
This study has 2 objectives. First is to....Second is to...

How do AA women of reproductive age express their perceptions and experiences of racism during and since childhood? Are there important domains or aspects of experiences not captured by existing measures?

Example: few measures tap in to past experience; pregnancy stress may be particularly salient for pregnancy outcomes. Do pregnant women experience discrimination differently (new domains?).

Note: Interaction of racism/racial discrimination and class disadvantage

## Conceptual framework

- Levels of Racism (Jones 2000)
- Internalized: acceptance of negative stereotypes/images
- Personally-mediated: acute and chronic/ episodic interpersonal experiences
- Institutional: differential access to goods, services, and opportunities
- Stress and coping
- Exposure and emotional/behavioral response (McNeilly et al 1996; Krieger 1990; Harrell 2000)
- Exposure, appraisal, response framework (Selye 1956)
- Stress-response process (e.g., CRH and HPA axis)
- Life-course (cumulative) approach

**Notes:**
We use a multidimensional framework, which defines 3 distinct levels of racism as important in the lives of women; and in their lifetime exposure to chronic stress. Those three levels are: internalized, peronally-mediated, and institutional.

We also hypothesize that the exposure-appraisal-response stress and coping process operates across levels of racism throughout the lifecourse; and that experiences of racism may affect pregnancy outcomes through psycho-physiological pathways involving neuroendocrine mechanisms activated through the stress-response process.

There have only been 2 studies, to date, that have examined both current and past experiences with perceived racism. 

Note: HPA axis - hypothalamic-pituitary-adrenal 

## Methods

- Measures of Racism and Social Position Working Group:
- UCSF Center on Social Disparities in Health
- CDC partners
- Berkeley and Sacramento Divisions of Public Health; and the San Francisco Department of Public Health
- Organized community groups (BIH, WIC, Youth Alive, etc.)
- 5 phases
- 1.	Literature review
- 2.	Focus groups for initial constructs/domains and questions
- 3.	Analysis to develop measures for testing
- 4.	Psychometric testing (reliability and validity)
- 5. Recommend measures

**Notes:**
This is a collaborative effort including academic, government, and community partners.

The project has 5 phases. First was to conduct a literature review of all existing measures of perceived racism. This enabled us to identify gaps areas of need with respect to our conceptual framework.

The next phase was a qualitative pilot conducting focus groups to engage women in expressing their perceptions and experiences of racism during and since childhood. The purpose of this phase was to identify the constructs of racism, domains of life, and lifecourse stages relevant for women of childbearing age.

The 3rd stage, which is where we are now, is analyzing the focus group transcripts to group/organize constructs and domains; and start to develop specific measures to be tested in phase 4. And the final stage is to be able to actually recommend psychometrically sound measures to be used in pregnancy outcome studies.

Note: Reliability and validity – test-retest, ICC, criterion (concurrent), convergent/ discriminant, socio-demographic, content.

## Phase 1: Literature review

- How well do existing measures capture
- Levels of racism
- Stress & coping response
- Lifecourse exposure
- Validity and reliability
- 21 measures
- 2 captured 3 levels of racism
- 4 capture stress and coping response
- 2 capture lifecourse experience/exposure
- 13 have been psychometrically tested
- No overlaps!

**Notes:**
Here we were interested finding out how well existing measures capture the various levels of racism, stress and coping response, and lifecourse exposure. And finally we wanted to find out which of the measures have been psychometrically tested.

We found 21 measures. 2 captured all 3 levels of racism; 4 capture stress and coping response; 2 capture lifecourse experience; and about half have been psychometrically tested.

## Slide 10

| Measure | Level of Racism | Exposure/stress and coping | Life-course | Psychometric testing |
| --- | --- | --- | --- | --- |
| Krieger 1990 | PM | Both |  |  |
| Major life events (Williams et al 97) | PM | Exposure |  |  |
| Everyday Discrimination (Williams et al 97) | PM | Exposure |  |  |
| Perceptions of Racism Scale (Green 1995) |  PM, INST | Exposure |  | Yes |
| Perceived Racism Scale (McNeilly et al 1996) | PM | Both |  | Yes |
| Schedule of Racist Events (Landrine and Klonoff 1996) | PM, INST | Exposure & stress (“how stressful was this for you?”) |  | Yes |
| Racism Reaction Scale (Thompson et al 1990) | PM | Exposure |  | Yes |
| Index of Race-related Stress (Utsey and Ponterotto 1996) | PM, INST, INT | Exposure |  | Yes |
| Reactions to Race (CDC MRWG, 2003) | PM, INST | Exposure |  | Yes  |
| NAD Scale (Taylor & Grundy 1996) | INT | n/a |  | Yes |
| Telephone PRS (Vines et al 2001) | PM | Both | Yes | Yes |

**Notes:**
These next few slides include all of the measures of racism we were able to find. 

## Slide 11

| Measure | Level of Racism | Exposure/stress and coping | Life-course | Psychometric testing |
| --- | --- | --- | --- | --- |
| Racism and Life Experience Scale (Harrell 1996) | PM | Exposure |  | Yes |
| Cultural Mistrust Inventory (Terrell and Terrell) | PM | Exposure |  | Yes |
| The Acculturative Stress Scale (Williams-Flournoy & Anderson) | PM | Exposure |  | Yes |
| Scale of Racial Socialization (Stevenson) | PM | Exposure |  | Yes |
| Racial Discrimination Index (Terrell & Miller 1980) |  PM, INST | Exposure |  | Yes |
| Multifactor Racial Attitudes Inventory (Brighman et al 1976) | PM | Exposure |  | ? |
| Climate for Racism Scale (Barbarin & Gilbert 1981) | PM, INST | Exposure |  | ? |
| Personal Discrimination and Racial Climate Scales (Watts and Carter 1991) | PM | Exposure |  | ? |
| Racialistic Incidents Inventory (Allan-Claiborne and Taylor 1981) | PM, INST, INT | Exposure |  | ? |
| Racism Stress 
(Dominguez et al, in press) | PM | Both | Yes |  |

## Phase 2: Participants

- 8 focus groups of 5 to 10 African American participants each (N=43)
- 2 teen groups (Oak, Sac)
- 6 adult groups (2 Berk, 2 Sac, 1 SF, 1 Oak)
- Low and moderate/high-SES black women with children < 15 years old
- Low and moderate/high-SES black teens (13-18 yrs)
- Northern California region: Berkeley, Sacramento, Oakland, San Francisco
- SES markers: participation in programs for low-income (e.g., WIC, BIH), professional groups/networks, private school

**Notes:**
We conducted 8 focus groups with AA women. Groups were race and gender matched. So the facilitators were also AA females. AA participants and facilitators.

We were also interested in examining interactions across SES; so we recruited for both low and mod/high SES AA women.

Note: September 04 – April 05

## Focus group guide

- Semi-structured focus group guide
- Levels of racism
- Stress and coping
- Life-course
- Probes
- Setting (e.g., work, school, public, home, neighborhood)
- Frequency, chronicity, intensity
- Personal vs. vicarious (individual and/or group; PGDD)

**Notes:**
We used a semi-structured focus group guide. While we wanted to facilitated an open-ended free flow discussion; we also wanted to make sure that we captured the specific pieces of information we wanted. So our guide was structured to engage women in expressing perceptions of their experiences with racism across levels, across phases of life and that also tapped into their stress and coping response.

We also planned probes for: 1) setting. These are domains covered by some of the existing measures. But we were curious to find out if any new domains emerged; 2) response categories; and 3) person vs. group 

## Analysis

- 6 coders independently analyzed 8 transcripts for thematic content
- Coding: manually and software
- Unit of analysis: words and phrases
- Coding layers: edge coding, thematic coding, pattern coding
- Codebook development: consensus building
- Frequencies of agreement
- Re-analyze data using software and codebook
- pull out language describing themes
- Use language for item development

## Phase 3: Preliminary Results

***Anticipatory racism ***
***Racial identity ***
***Direct/vicarious ***
***Concern for children ***
***Coping response ******(emotional,****** cognitive, ******behavioral)****** ***
***Physical response***
***Lifestage of experience***
***Chronicity***
***Pervasiveness***
***Contextualized experience***

## Anticipatory Racism

- Necessity to be prepared for possibility of being treated differently because of race. (e.g., how often do you think about your race?)
*I** ****expect**** it [racism] to happen everyday. **(low SES, Sacramento)*
*It’s a ****constant thing**** that we [Blacks] ****have to deal with****... **(low SES, Berkeley)*
*It’s ****everyday life****, it’s going to be there. If you try to ignore it, it’s going to be there.* *	**	**	**	**	**	**	**	**(low SES, Sacramento)*

## Racial identity/GroupConnectedness

- How connected one feels to other AAs.
*Because it was ****a black mother**** because they ****already look down**** on us and ****we don’t**** need to give them more reason to do so. *
*	**	**	**	**	**	**(mod SES, Berkeley) *
*We already have this reputation, don’t give them a reason to treat me different when I get up to them, or to look down on us. (mod SES, Berkeley)*

**Notes:**
How connected one feels to other African-Americans

## Direct personal experiences

- Direct/personal experiences with perceived racism (covered by existing measures but not across lifecourse)
*I was walking down the street and a ****white woman**** ****grabbed her purse****....that’s something you always feel...because ****no matter what you have, you’re black first****....they will kiss your behind as long as you have money but ****they still see a nigger****...*
*	**	**	**	**	**	**	**(low SES, Berkeley)*

**Notes:**
Personally-mediated

Unfair treatment question.

## Vicarious experiences

- Indirect experience with perceived racism (individual or group).
*	**My brother, he stays in trouble.  But in our neighborhood, he was about 14 and we’re not even a year apart, but ****they arrested him**** at AM/PM and they had the ****description****** ****when they arrested him of a ****black man in a black coat with braids.  Do you know how many people that is in our neighborhood?******  ***
- 						*(mod SES, Sacramento)*

**Notes:**
Personally-mediated
Unfair treatment question of someone close to you or someone you know.

## Concern for children

**	***I remember ****looking at my baby****, he had to be about 2, I remember looking at him and saying ****oh my God, what have I done?****  And that’s a sad, sad, sad feeling when you bring...because your child is supposed to be the happiest thing that you have on this earth and I’m looking at him going what have I done?  ****My child is going to have to go through this life being black. ***
*	**	**	**	**	**	**	**(mod SES Sacramento)*
*	**I think about it everyday. More than myself, ****I think about the fact that my daughter is black.  ***
*	**	**	**	**	**	**	**(mod SES, Sacramento)*

**Notes:**
Emotional response: sad feeling.

## Concern for children

*	**Racism has ****affected me differently at different stages****. As a child having best friends that did not look like me affected [me]. **** ******I wanted to have blonde hair and blue eyes**** like my friend.  ****In high school**** ****going from the white school to the black school**** and feeling fear...because having all that ****social stigma****, stereotyped stuff inside saying that there’s ****something wrong with us****... but trust me, the pressure of racism is a trip...I instill this to my children...I’ve heard my son say to me, why don’t I have blue eyes?  And I look at him because I have brown eyes and your daddy has brown eyes, that’s why you brown eyes. And be proud that you have beautiful brown eyes and nappy hair.  So ****constantly having to fight against that and educating****. *
*	**	**	**	**	**	**	**(high SES, Sacramento)*
* *

**Notes:**
Internalized racism
Lifecourse
Fear (emotional response)
Countering (behavioral response)

## Emotional coping response

*When you’re ****working your hardest**** to get to a place in life where you want to be, and you see ****white people**** or people other than blacks ****getting ahead so quickly****, it ****starts to wear on you where you get depressed**** and you start thinking bad thoughts, and ****wondering if you’re really a valued part of society.****** ****(mod SES Sac)*
***Realistically****, it’s going to affect you...it does bother you, you just ****put it in a different place****. (low SES Berkeley)*

**Notes:**
Depressed connoting a feeling or emotional response which may signal some form of psychosocial stress.

feeling that no matter what they do, they are not going to be anything until they are in the upper ranks with white society.

## Cognitive coping response

*So everyday I have to deal with that [racism] so ****it’s stressful****.  ****I take that in internally****. It’s subtle...it’s like hidden, but you feel it still. So I feel like I feel it everyday.  And it’s more so because I’ve got kids I think. *
*	**	**	**	**	**	**(low SES teens, Oakland)*
*I think that when it happens to you so much that you not necessarily ****learn to accept it******,**** but ****you learn**** to not trip off of it no more.  *
*	**	**	**	**	**	**(low SES teens, Oakland)*
*You’ve just got to ****work harder**** I guess. **(low SES teens, Oakland)*

**Notes:**
Adaptive
Acceptance
John Henryhism

(e.g., denial, acceptance, adaptive processes, countering, John Henryism, etc.)

## Behavioral coping response

*I will take forever to find something to wear **because I feel** I’m not going to be treated right when I go shopping. It makes me feel bad and sad*
*	**	*(impression management)

## Physical (bodily) response

*My **heart **starts beating fast **(low SES, SF)*
*My **stomach**. My, like my baby. I know my baby is **stressed out**. My stomach is in a **knot** when I come over here. **(low SES, SF)*
*I get a **stomach ache**, I’ve **broken out *
*	**	**	**	**	**	**(low SES, SF)*

## Overarching themes

- Impact (invasive)
- Multiplicity of emotions
- Response
***Chronic/pervasive nature***
***Cumulative***
***Subtle  and implicit***
***The “I” in “we”***
- Discrimination shifts across domains of interaction across the lifecourse (***contextualized experience***)

## Where we go from here?

- Literature review manuscript
- Finalize codebook
- Re-analyze data using software coding
- Draft measures of racism
- Validation
- Recommend measures

## Acknowledgements

- Measures of Racism and Social Position Working Group:
- Wizdom Powell, PhD (UCSF/UCB)
- Tyan Parker Dominguez, PhD (USC)
- JanXin Leu, PhD (UCSF/UCB)
- Cassius Lockett, PhD (Sacramento DPH)
- Barbara Curry (Sacramento DPH)
- Vicky Alexander, MD (Berkeley DPH)
- Tiffany Simpson  (Berkeley DPH)
- Lynda Dailey, NP (Berkeley DPH)
- Twila Brown,(San Francisco DPH)
- Camara Jones, MD, PhD, (CDC)
- Funding Support:
- California Endowment
- CDC
- RWJ Health Disparities Working Group (UCSF)