PUBLIC HEALTH PERSPECTIVES: COMMUNITY ADVOCACY

WOMEN'S HEALTH

Karen Welch, MPH

AND LOW-INCOME HOUSING

ABSTRACT

The inequities in health care and housing access experienced by low-income women in the United States are a continuing concern. This article addresses the interrelationships between housing and health as experienced by low-income clients so that health care practitioners can begin to build active and effective health-promoting partnerships with clients, their fam- ilies, and their communities. A case study is presented that describes the actual experience of a woman living in a low- income housing development and its effect on her health and access to health care. The importance of the role of midwives in addressing thE; health care and advocacy needs of women in substandard housing is highlighted. © 1997 by the American College of Nurse-Midwives.

Despite the status of the United States as a modern industrialized nation, many women and families continue to live in substandard housing conditions. The inequities in health care .and housing access are a major concern for this nation, especially in light of recent shifts in federal welfare policy that are likely to compound health and housing access problems already faced by low- income women and their families.

A population-based approach is essential for begin- ning to understand the interrelationships between hous- ing and health as experienced by low-income women. Assessment of housing issues must take into account both the specific living conditions of individuals and the known risk factors for vulnerable populations. With this information, health care practitioners can begin to build active and effective health-promoting partnerships with clients, their families, and their communities. Given their current and historical contributions to the care of low- income women, midwives must be prepared to fill the important role of advocacy, in addition to provision of high-quality health care.

What are the implications for certified nurse-midwives (CNMs) and certified midwives (CMs) who provide pri- mary care to women who live in substandard conditions?

Address correspondence to Karen Welch, MPH, Boston University School of Public Health, Department of Maternal and Child Health, 715 Albany Street, Boston, MA 02118.

The Jo urn a I of Nu rse-Mid wifery (JNM) has sponsored a series on primary care for women (1,2); in Part I, it was asserted (3) that as CNMs and CMs begin the assessment process, it is imperative that they have a clear under- standing of the physical, social, and psychological envi- ronment that clients inhabit, as well as the environmen- tal, legal, and social issues that may contribute to disease.

Many midwifery clients live in substandard or low- income rental units. Paine et al (4) estimate that in 1991, 400,000 visits were made to CNMs by women or infants living in high-poverty areas (where >30% of the popu- lation were living below the national poverty level). Midwives must be able to assess the affect that high levels of stress may have on the health of women living in less than adequate housing and the potential for negative health outcomes resulting from environmental hazards and substandard conditions. This article attempts to address the public health implications of substandard housing and to mobilize advocacy on the part of mid- wives as primary health care providers.

SUBSTANDARD HOUSING: HISTORICAL OVERVIEW

On a national level, the quality of housing is closely tied to economic trends. During the past two decades, the gap between rich and poor has widened in the United States (5,6), as it has worldwide (7). Consequently, in 1985, there was a shortage of more than 500,000 low-rent units in rural areas in the United States, and in 1991, there were nearly two low-income renters for every unit in urban areas (8). Because health status correlates closely with income level, poverty has been a major force behind increasing disparities in health status (9). The negative effects of poverty on health are often mediated and reinforced by substandard housing (10).

Direct Effects on Health

The Department of Housing and Urban Development (HUD) defines a substandard unit, or one with "severe physical problems," as reflecting one or more of the following conditions (1 I):

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• lack of hot water and/or cold water, a flush toilet, and/or either a bathtub or a shower

• heating equipment that has broken down at least three times in the previous winter for periods of 6 hours or more, resulting in the unit being uncomfortably cold for 24 hours or more

• a unit that has no electricity or that has exposed wiring, and a room with no working wall outlet and

has had three blown fuses or tripped circuit breakers within the past 90 days

• no working light fixtures in public areas such as hallways and staircases and loose or missing steps and loose or missing railings and no elevator

• a unit that has at least five basic maintenance prob- lems such as water leaks, floor or ceiling holes, peeling paint or broken plaster, or evidence of rats during the past 90 days

Substandard housing is not always associated with a deterioration in health or quality of community life, as demonstrated recently by Sampson et al (12). In this landmark study of 343 racially, ethnically, and socioeco- nomically diverse neighborhoods in Chicago, research- ers examined issues related to community cohesion and resilience and described a number of impoverished neighborhoods with substandard housing in which resi- dents maintained shared values, a strong cultural iden- tity, low crime rates, and collective responsibility for children. Communities like these can be healthy, nurtur- ing, and ihealth promoting. In the face of persistent poverty-generated inequities, however, this pattern is the exception rather than the rule.

When community resilience is lacking, residents living in substandard conditions may experience challenges to health status in the form of physical manifestations, mental health effects, and social consequences. Inade~ quate housing is an outcome of poverty, but it also reinforces poverty by creating conditions such as poor sanitation; increased stress levels; lack of safety; and increased rates of infection, injury, and illness, all of which make it difficult to obtain and retain employ- ment (13).

Karen Welch received her MPH from Boston University School of Public Health, where she majored in International Health and Maternal and Child Health. While at Boston University, Ms. Welch completed the Maternal and Child Health Leadership Program and was a fellow in the AmeriCorps Health and Housing Program in which she was assigned to live and work with low-income families in the greater Boston area. Her role vis- ~.vis public housing residents included that of health educator, case manager, community organizer, teacher or tutor, housing authority liaison, friend, and neighbor. Ms. Welch has also worked as a teacher and development worker with the Peace Corps.

Common physical manifestations of substandard housing. Infect ion: Overcrowding; lack of hot water, predisposing to poor sanitation; and insufficient heat dur- ing winter all contribute to an increased risk of infection. Types of infection associated with poor housing conditions include newly emerging resistant forms of tuberculosis, skin abscesses, and positive Helicobacter pylori titers in chil- dren living in overcrowded conditions (14).

A s t h m a : Dampness is associated with increased respi- ratory infection and asthma in a dose-response curve, independent of socioeconomic conditions and other confounding variables (15). Furthermore, the affect of damp conditions and poor ventilation is magnified by an associated overgrowth of mold and fungi (16). Nitrous oxide, which is released when cooking stoves are used for heating purposes, has also been shown to be asso- ciated with respiratory disease (17). Cockroach allergy is known to exacerbate asthmatic conditions (18), as is allergy to house dust mites (19), which is also linked to atopic dermatitis (20). Indoor concentrations of volatile organic compounds such as formaldehyde and terpenes may be factors in asthma exacerbation (19).

Lead poisoning: In addition to direct exposure to lead in paint and contaminated soil, lead contamination of dust is a major health risk in substandard housing (20). Lead exposures among white children appear to be caused primarily by exterior factors such as soil, whereas exposures among black children are more likely to be interior in origin, ie, from windowsill dust (21).

Social consequences of substandard housing. In-

jury and violence: There are other factors that may transform a neighborhood from shelter to social risk and potential health risk. Injury rates are doubled among chil- dren of single mothers living in substandard housing (22). Poor housing quality has been shown to correlate with lack of injury prevention strategies such as stair gates and smoke alarms (23). In addition, contact with hot surfaces is a major cause of childhood injury among children living in public housing (24).

Isolation and marginal izat ion: The very structure and layout of many marginalized neighborhoods discour- ages mobility and fosters isolation (10). Public housing developments, often designed as high-rise buildings Io- cated in pockets throughout the inner city, are generally isolated from commerce and basic amenities and typi- cally lack common areas such as benches or playgrounds where residents can socialize.

Mental health effects of substandard housing. Women in a Chicago public housing focus group study described "intense loneliness," fear, chronic stress, sus- picion, and mistrust of fellow tenants, all of which they attributed to the unpredictable environment in which

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they live (10). One study participant described her daughter's daily efforts to catch the school bus "after stepping over the dope fiends and the junkies" in the hallway. Not surprisingly, women in the study believed that friendships outside the immediate family were risky and likely to introduce more problems and confusion into their lives.

Crowding, litter, and poor maintenance of facilities may create an environment of ambivalence and hope- lessness (25). When physical disorder is reflected by high levels of violence in the community, parents may protect children by keeping them inside and away from per- ceived danger but at the same time isolating them from friends and normal play activities. The mental health of adolescents may also be negatively affected by high levels of neighborhood violence. In a study of black teens living in public housing, depression was highly correlated with exposure to violence and the perceived probability of not being aliive by the age of 25 (26).

ASSESSING THE AFFECT OF HOUSING FACTORS ON INDIVIDUAL CLIENTS

Assessment of Health Risk

Women and children living in substandard or low-income housing may aheady be at risk for poor health because of socioeconomic indicators of low educational levels, re- duced income, and single head of household status. In addition to making a determination about these indica- tors, midwives must ask specific questions about housing conditions as a routine part of all client histories to determine whether health problems may be induced or exacerbated by substandard housing. Additionally, the ability of clients to follow through with recommendations may be adversely affected by the circumstances in which women and their families live.

In part 1 of the JNM primary care series, Keleher (27) described in detail the components of a comprehensive assessment of the home environment. Factors to be assessed include a variety of physical, psychological, and social conditions that contribute to injury potential, infection risk, chronic disease exacerbation, stress, and poor health, such as the following:

• Environmem!al hazards posed by the location of low-income units near toxic waste sites (eg, next to or on top of a defunct lead-smelting plant)

• Safety hazards posed by facilities that have become dilapidated oi~ otherwise fallen into disrepair (broken glass or shut-off valves exposed in common areas, lead paint, poor ventilation, infestation)

• Physical conditions such as crowding and disrepair (28,29)

• Psychological factors including isolation, low self- worth, anxiety, and depression (10,30)

• Geographic factors, including proximity to grocery stores and pharmacies and access to transportation

• Social factors such as crime and violence • Discrimination by race, gender, social class, or

location, all of which may contribute to health risks. Indeed, the position of poor residential areas in our social hierarchy and the lack of power associated with living in a poor neighborhood or on public assistance may be connected to a decreased sense of self-efficacy (31)

• Access to health care is often inaccessible or less accessible to marginalized women. Women in public housing who qualify for Medicaid are in effect without insurance if the neighborhood lacks local providers or if existing practitioners do not accept Medicaid (32)

CASE STUDY

As one woman's story, this case study provides an intimate look into the life of a potential client and describes an expanded, active role for midwives as advocates for their clients and allies to their communities.

Jenny is a young, single mother living in a low-income housing development. She suffers from epilepsy and chronic depression as a result of a head injury received as a teenager. In describing her physical environment, she details numerous safety hazards that exist within her immediate neighborhood. There are no sidewalks, stop signs, or speed bumps on the street on which she and her daughter live. On a daily basis, it is not uncommon for her to encounter broken glass and used hypodermic needles littering the ground, lead paint that is chipping and peeling, and neighboring buildings that are infested with termites. Jenny's apartment is filled with mildew and roaches, but extermination is not possible because of poor ventilation.

Jenny was not bom into a culture of poverty. She was raised in a middle-class environment and describes her childhood as privileged. She is very candid about how her opinions of poverty have changed. "I was raised," she says, "to believe that poor people were worthless. No one ever told me that some people are poor because life is life."

Jenny worries that the maintenance problems in her apartment--in particular the lead paint, lack of ventila- tion, and the dampness--may pose a threat to her 3-year-old daughter's health. She wonders whether the asthma, allergies, and ear and respiratory infections to which her daughter is prone have anything to do with the mildew on the walls and ceilings of her apartment. She has called the housing authority several times to com- plain, but her calls have not been returned.

In addition to the specific concerns Jenny voices about

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her physical environment, she says she experiences feelings of anger, resentment, frustration, and hopeless- ness nearly every day and describes herself as feeling "stressed out every day, all the day." She pressures herself to be a "perfect" role model by providing a spotless apartment, neat clothes, and all of the right toys for her daughter. She believes that if she is not perfect, she will be seen as having failed her daughter and judged as deserving to live in public housing.

Jenny's perception is that life in a housing project does not provide a nurturing environment for children. Near tears, Jenny shares, ' I feel like I'II be apologizing to my daughter for the rest of her life." The financial pressures of providing for her daughter on a monthly income of $595 are debilitating, but Jenny brightens when she talks about her hopes for the future. Jenny wants to provide her daughter with everything to make her strong, confident, happy, and well educated.

Jenny is quite articulate and often serves as a neighbor- hood spokesperson. She sees many strengths in poor people arld talks about how powerful the energy and activism of the poor can be because "they have so much to lose and so much to gain from social change." She appreciates the authenticity of her neighbors, commenting that "poor people are more honest about their lifestyles because they know that the other is in no place to judge."

Jenny struggles with the shame and embarrassment that stigma can produce, and she sees her life as a "public performance." She believes that receiving such a visible type of public assistance, a low-income unit in a public housing development, subjects individuals to re- lentless public scrutiny. As she explains, "we're in a fishbowl here, living so close to one another. I feel like if somebody knows where l'm from they'll think that l'm doing okay for a project kid." She describes the anger she feels when people make assumptions about her on the basis of her residence. She recounts experiences when more privileged individuals have found out where she lives and "they try to dumb-down for me and start swearing. They think it's okay to swear in front of my child because of where we live."

The idea of discrimination becomes more powerful, according to Jenny, when it's experienced firsthand. She believes that the poor maintenance of her housing only reinforces discrimination and causes people to think, "okay, they live like animals so we'll treat them like animals."

Jenny wants her providers to understand that she sometimes feels "blocked" and unable to make healthy choices. Barriers that prevent her from obtaining better health ca,re or taking advantage of opportunities to improve her well-being include lack of a baby-sitter, no family support, and scarce financial resources. Jenny believes that "if they [providers] would come down here

and live it, and not just visit," then they would come away with a fuller picture of her health and the risks that she faces on a daily basis. She adds that she would not only feel better understood but also supported, as "it feels good to connect with someone who knows what you have to do just to survive."

Jenny's greatest concern, and the one with which she has asked her health care provider to help her, centers around the lead paint that is chipping and peeling through- out her home. Recently, she discovered that her daughter's blood lead level had nearly doubled, reaching 8.9 and 8.6 during the past 6 months. During a recent healthcare visit, Jenny requested help with writing a letter to her landlord. She also requested copies of the state housing regulations that govem lead abatement and interim control measures and asked her provider to enlist other health professionals in joining with her and community representatives in planning a press conference.

THE MIDWIFERY RESPONSE

Responding effectively to the needs of women such as Jenny requires an expanded definition of health as well as an expanded role for the midwife, a role that goes beyond the standardized assessment and treatment checklist. Intervention that will be effective for women like Jenny may include advocacy to promote their social and economic well-being. To take a population-based view of their clients' needs, midwives will have to possess skills in developing patient-provider partnerships, as- sessing barriers to access, and building alliances with communities and community organizers.

Developing Patient-Provider Partnerships

A comprehensive view of primary health care demands client participation in the assessment, planning, and deliv- ery of services. Health services become more responsive and appropriate when clients participate in their planning and evaluation (33). A participatory approach enables community members to perform their own "diagnosis" of needs and barriers, while setting priorities for health and social services (34). Participatory programs allow clients to plan, evaluate, and redesign interventions and require that community health professionals share control and make a substantial inveslznent toward building the organizational skills and self-efficacy of clients (35).

Assessing Barriers to Access

Assessment tools may include surveys, focus groups, observations, and informal interviews with opinion lead- ers. Access to health care can be provided through neighborhood-based clinics, mobile clinics, storefront

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setups in neighborhood parishes or community centers, and colocations of health services with existing social services (9).

Psychosocial access issues affecting marginalized women must also be examined and addressed. A patient's willing- ness to see a provider is not only determined by the individual's emotional and psychological state but also by the attitudes and practices of clinicians and staff (36). Developing trust and rapport is of paramount importance in settings where women come from residential environ- ments characte:~ed by tension, mistrust, and isolation. The provider's approach can be critical in determining whether women seek further care, especially in the face of larger messages that communicate that the institutions are not to be trusted (37).

Opportunities for dignity and patient control can be built into the re, ferral and service provision process. At a neighborhood-based prenatal clinic in inner-city Notting- ham, United Kingdom, midwives explained their clinic's approach to handling referrals with dignity. When meet- ing a first-time client (often referred through a local midwife), the woman is encouraged to fill out an "intro- duction letter," sharing information about herself and her family (381). The Nottingham clinic's definition of health promotion for pregnant women also recognizes the need for support through discussion groups offered to clients (38).

Building AUiances with Communities

Whenever possible, providers should use referrals to integrate health services for marginalized women into existing networks of social support, rather than attempt- ing to replicate these services. Providers may use worn- en's organizational networks as intermediaries (39), al- lowing women a chance for self-empowerment through social organizations (30). Collaborations with other types of providers strengthen a neighborhood-based clinic's ability to provide comprehensive primary care and health promotion. Individuals may be at less risk for negative health outcomes associated with discrimination if they are "able to articulate, rather than internalize, their experiences with discrimination" (40). Indeed, in settings where supportive services such as child care, adult education, and counseling are not available, a population-based health care focus requires that provid- ers build these components into primary health care practice whenever possible.

Providers must be prepared to provide appropriate services through advocacy and referral. Advocacy may be needed in arenas not typically viewed as related to the health sector; providers might involve themselves in urban planning and policy, or fund-raising projects. They might offer to use their status to communicate to gov-

ernment officials, landlords, and public housing manag- ers the ways in which environmental factors increase their patients' risk of poor health.

Community-Organizing

The most crucial tasks of the health educator are the following: 1) To arouse indigenous community aware- ness, concern, and initiative; 2) To provide technical assistance to those who wish to take initiative; and 3) To connect interested individuals with sources of support needed from other levels of the organization (34).

By encouraging community organization and par- ticipation, clients directly benefit from improved ser- vices and indirectly benefit from learning new skills and developing relationships with their neighbors through planning activities (35). Opportunities for community-building are critical in marginalized neigh- borhoods. Such opportunities permit women to meet one another and build support networks while mitigat- ing the fear and hostility endemic to the environment. These networks must be built gradually and reflect residents' most pressing needs (such as child care, food production, or income-generating small business or microcredit programs). The health professional may play a key role in linking the newly formed groups into the supportive network of the larger health community (30).

IMPLICATIONS FOR POPULATION-BASED PRIMARY HEALTH CARE

Substandard housing may have a negative effect on the health of individuals and the viability of communities. A population-based approach to primary care requires health care providers to broaden their focus to include the social and economic environment of their patients in their assessment of clinical problems and determination of appropriate interventions (41). This focus must in- clude an analysis of the community's shared perceptions (34) and result in community-building strategies that augment social support, encourage help-seeking behav- iors, and strengthen clients' self-worth and self-efficacy.

In this and the first two parts of JNM's series on primary care for women (1,2), several authors have proposed an expanded assessment and advocacy role for midwives and other practitioners to maximize the effectiveness of clinical interventions for individual pa x tients. They have argued cogently that many of the health problems experienced by clients begin in commu ~ nities and can only be resolved in a lasting way with the help of communities.

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Preparation of this article was supported in part by grant MCJ-259501 from the Matemal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, U.S. Department of Health and Human Services. Particular acknowledgment is extended to Judith Bernstein, RNC, PhD, Lisa Paine, CNM, DrPH, FACNM, and Margaret Pendlebury for their input in preparation of this article.

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