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Research Agenda for Psychosocial and Behavioral Factors in Womens Health: Chronic Diseases
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Arthritis and Rheumatic Diseases
Cancer
Cardiovascular Disease
Depression
Eating Disorders
HIV and AIDS
Arthritis and Rheumatic
Diseases
Arthritis and rheumatic
disease include more than 100 different illnesses and conditions (Schumacher,
Klippel, & Koopman, 1993). Arthritis is the most common self-reported chronic
condition affecting women (CDC, 1995), and many of the more common and more
serious forms of arthritis and rheumatic disease (e.g., osteoarthritis, rheumatoid
arthritis, systemic lupus erythematosus, fibromyalgia) affect two to five times
more women than men. Hence, arthritis and rheumatic diseases, which significantly
affect functioning, represent a significant health problem for women. For example,
among women age 15 and older, arthritis is the most frequently cited reason
for activity limitations, and people with arthritis experience a disproportionately
greater amount of work disability compared with people with other chronic conditions
(CDC, 1995; Yelin, 1992).
Research Priorities for
Arthritis and Rheumatic Diseases
Conduct research to help
identify the underlying mechanisms that account for the discrepancies among
ethnic groups and social classes in the health outcomes among women with arthritis
and rheumatic diseases.
Epidemiological studies
have consistently demonstrated worse health outcomes among women with arthritis
and rheumatic diseases who are members of ethnic minority and lower socioeconomic
groups (CDC, 1994). Unfortunately, the underlying mechanisms that could account
for these differences are poorly understood. Potential constructs that could
explain these relationships include cultural differences in health beliefs,
stress, social support and coping mechanisms, access to health care, and differential
treatment patterns.
Initiate studies to describe
the complex causal connections between psychological and physical processes
in arthritis and rheumatic diseases.
Current research suggests
that complex, reciprocal relationships may exist between physical and cognitive
and emotional processes in arthritis and rheumatic diseases. Investigations
using a variety of methodological approaches are needed to unravel the causal
mechanisms linking cognitions, emotions, arthritis symptoms, physiological processes,
and behavior.
Expand research on the
causes and treatment of pain in patients with arthritis and rheumatic diseases.
Patients identify pain
as the most serious consequence of arthritis and rheumatic diseases (Skevington,
1993). Although a great deal of pain research has been performed regarding inflammation,
little is known about other pain mechanisms in patients with inflammatory and
non-inflammatory arthritis and rheumatic disease. In addition, little is known
about interactions between the brain and endocrine and immune systems that are
involved in arthritis pain. Currently, no treatment interventions are available
that completely alleviate pain in arthritis and rheumatic diseases. The development
of more effective pain treatments would reduce suffering and health care costs
for millions of women.
Expand research on the
epidemiology, identification, treatment, and prevention of depression in people
with arthritis and rheumatic diseases.
Research suggests that
people with serious chronic diseases are at greater risk for developing depressive
disorders and symptoms (Wells, Golding, & Burnam, 1988). Depression alone
is a devastating condition that, in the absence of other health problems, is
associated with severe functional limitations. When depressive symptoms occur
in combination with other chronic diseases, however, functioning levels decrease
(Wells et al., 1989). Because women are at greater risk for depression as well
as at greater risk for some of the more serious and more common forms of arthritis
and rheumatic disease, they bear a double burden of potential disability (DeVellis,
1993). We need a better understanding of the scope and impact of depression
in arthritic and rheumatic diseases as well as research on how to prevent and
treat depression in this population.
Expand research on the
causes and treatment of fatigue in people with arthritis and rheumatic diseases.
Fatigue is commonly associated
with many forms of rheumatic disease such as rheumatoid arthritis (RA) and fibromyalgia
syndrome, yet has received little study. Research by Belza and colleagues (Belza,
1995; Belza, Henke, Epstein, & Gilliss, 1993) has found a high degree of
fatigue among people with RA that interferes with discretionary and nondiscretionary
activities of daily living and causes distress. Among people with RA a number
of disease-related characteristics (e.g., pain, disease duration, sleep quality)
place them at greater risk for experiencing fatigue. Being female, however,
places one at additional risk for fatigue in RA. The causes of fatigue in both
health and illness are poorly understood and need further study.
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Cancer
Cancer is the second leading
cause of death for women in the United States. Approximately one in three Americans
will have cancer at some point during their lives. Breast, lung, and colorectal
cancers have the highest incidence rates and are most likely to be causes of
cancer deaths among women (Meyerowitz & Hart, 1995). The high prevalence
of cancers makes it likely that all women will face the disease either in themselves
or in family members. Furthermore, the availability of effective early diagnostic
procedures means that cancer-related health care behaviors should be a part
of every woman’s life.
Research Priorities for
Cancer
Continue intensive investigation
of methods to promote cancer screening among women and of women’s reactions
to such screening, particularly in groups where screening is underutilized (e.g.,
women who are older, poorer, or of ethnic minority status), and groups at risk
for specific cancers (e.g., higher cervical cancer risk in Latina women).
Early detection of cancer
leads to substantial reductions in cancer mortality. Intervention efforts directed
toward health care providers should be increased because physicians’ recommendation
for screening appears to be the most consistent predictor of mammography use.
Further, in light of the national research focus on genetic susceptibility to
cancer and the growing consumer demand for genetic screening, we need to know
more about the psychological, social, and economic sequelae of being diagnosed
with genetic mutations that increase breast cancer risk. It is critical to develop
effective methods for delivering information to women about their personal risk
and promoting accurate understanding of this risk. Interventions must be developed
for women of diverse socioeconomic and ethnic backgrounds that address these
special concerns and facilitate the process of making informed screening decisions.
Expand research about
the impact of cancer, particularly some common sites of cancer about which we
have relatively little information (such as colorectal cancers, head and neck
cancers, and lung cancers), and about the mechanisms that promote positive adjustment
to cancer and its treatments within the context of women’s lives.
Research suggests that,
on average, women remain psychologically resilient after being diagnosed with
cancer. However, there are stressful periods during which women with particular
characteristics are vulnerable to marked distress and life disruption. Continued
investigation of areas of ongoing distress and factors that place women at risk
for compromised adjustment is necessary. Additionally, studies of women who
do well over time may further our understanding of mechanisms that promote positive
adjustment. Data on psychosocial recovery following the diagnosis and initial
treatment for cancer, and the areas in which problems are common or persistent,
may vary by site of disease and treatment protocol. Data on quality of life
and predictors of adjustment at the time of disease recurrence and throughout
the period of advanced disease also are needed.
Develop methods for improving
efficiency and efficacy of psychosocial interventions for particular groups
of women and identify mechanisms by which these interventions have positive
psychosocial and medical effects.
Early interventions are
necessary to improve psychosocial functioning and quality of life for women
at risk for adverse outcomes as a result of receiving a cancer diagnosis. Research
on psychosocial interventions for women with cancer has focused on testing the
efficacy of supportive and educative interventions conducted in a group context.
Results are promising and positive benefit has been documented on both psychological
domains and mortality. Effective interventions for women who do not elect a
group approach are also needed. In addition, greater attention to study of interventions
for the broader family system, as well as for women who serve as caretakers
for others who have cancer, is warranted. Further investigation also is needed
regarding the psychological, behavioral, and immunological mechanisms through
which interventions have their impact.
Examine identified causal
and protective factors that may decrease cancer incidence and mortality and
the potentially complex interactions among biological, psychological, and social
factors (e.g., social support, coping strategies, immunological function) that
may promote or hinder survival and psychosocial adjustment.
Researchers have identified
possible predictors of cancer incidence and course that require careful examination,
including exogenous hormones, environmental and workplace toxins, and regular
physical activity.
Psychoneuroimmunological
variables also have shown great promise as predictors of cancer onset and progression.
We must understand the role that these factors may play and the mechanisms that
underlie their impact on cancers.
Examine impediments to
receiving medical care, effects on quality of life, optimal coping, and effective
psychosocial interventions for poor women and women of color.
Cancer research has heavily
focused on middle-class, non-Hispanic white women who live in urban and suburban
areas. It is essential to include research with women who traditionally have
not been studied. Future research will require the development of reliable and
valid assessment tools specifically designed to address issues of particular
relevance to these women.
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Cardiovascular Disease
Despite a steadily declining
rate of cardiovascular disease mortality in the United States, heart disease
is still the number one cause of death in American women. More women die of
heart disease than of all malignant neoplasms combined. Women also have a worse
prognosis for survival after myocardial infarction (MI) than men, and African
American women have the worst prognosis of all.
Research Priorities for
Cardiovascular Disease
Examine neurophysiological
and neuroendocrine mechanisms unique to cardiovascular changes in women, including
the effect of chronic stress on gonadal hormones and the unique neurohormonal
and neurophysiological (vagal) mechanisms for stress buffering.
Research on nonhuman primates
has shown that chronic social stress is related to a significant increase in
coronary artery atherosclerosis, anovulatory menstrual cycles, a decrease in
estrogen levels, and high central serotonergic responsivity in females. Despite
the strong evidence of these associations in primates whose cardiovascular systems
strongly resemble our own, the effect of chronic stress on gonadal hormones
and atherosclerosis has not been investigated in women.
Another pathway that needs
to be explored is that of oxytocin, a hormone secreted in pregnant and lactating
women. This hormone, which differs by only two amino acids from the vasoconstrictor,
vasopressin, seems to be associated with blood pressure reduction. As a rule,
blood pressure decreases during pregnancy and recent research has demonstrated
that exogenously administered oxytocin causes sustained reduction of blood pressure
in both male and female hypertensive rats. But oxytocin release also can be
stimulated behaviorally by sensory stimuli such as massage. There is a dearth
of research on the unique neurohormonal and neurophysiological (vagal) mechanisms
for stress buffering in women, and such research should be a priority.
Initiate studies to determine
the impact of psychosocial factors (e.g., social support, socioeconomic status,
and environmental stress) on primary prevention of cardiovascular disease in
African American women.
In Africa, women with large,
socially integrated families have the lowest blood pressure. However, in the
United States, African Americans have higher rates of hypertension than do whites
of similar age. African American women also have the worst prognosis after myocardial
infarction. The fact that blood pressure in Africans is much lower than in Americans
of African ancestry suggests that sociocultural rather than genetic factors
explain a large part of the variance in these differences. Research in black
and white differences in recent years has begun to examine gender differences
in cardio-vascular and hemodynamic responses to stress. But research on the
chronic social psychological stressors specific to the lives of black women
is almost nonexistent. Research on such factors as social support, socioeconomic
status, and other psycho-social factors should be directed toward identifying
patterns of high risk stressors and the mechanisms that mediate their effect
on the cardiovascular system.
Examine factors that influence
adherence and behavioral change in the secondary prevention of coronary heart
disease (CHD) in women.
Women are usually supportive
in helping implement lifestyle changes for their husbands and other family members
(e.g., dietary changes, exercise, and stress reduction) that are necessary for
increasing the probability of survival. However, the lifestyle changes that
are important for women’s own rehabilitation of CHD may engender negative responses
from immediate family members because these changes may conflict with gender
role expectations of women (e.g., traditional caretaker and nurturer). Research
is needed that examines the effect of these gender role expectations on the
ability of women to effect and maintain health-related lifestyle changes and
the subsequent effect on quality of life, depression, and disease course.
Expand research to clarify
which psychosocial factors (or pattern of factors) increase vulnerability to
cardiovascular disease and the neuroendocrine pathways that mediate them.
Epidemiological studies
have repeatedly shown a significant linear association between socioeconomic
status (SES) and coronary heart disease (CHD): the lower the SES, the higher
the prevalence of CHD. Previous research in this field has focused on the association
between low SES and poor health behaviors such as higher smoking rates, unhealthy
diets, and higher rates of obesity. More recent research shows a larger proportion
of chronic physical and psychosocial stressors such as jobs with high demand
and low decision latitude, low social support, high job dissatisfaction, unemployment,
residential areas with high crime rates, and poor access to medical treatment
among people with low socioeconomic status. Many of these psychosocial factors
are related to cardiovascular risk. Women with low SES are particularly vulnerable.
Investigate the interactions
among genetics, behavior, and environment in the development of coronary heart
disease.
Many different physiological
factors predispose an individual to increased risk of coronary events. High
blood pressure, high total and LDL cholesterol, low HDL cholesterol, obesity,
and diabetes are prime examples. All of these show evidence of genetic influence.
Therefore, many genetic variations can predispose one to increased risk. Behavioral
and environmental factors interact with underlying genetic predisposition to
trigger, to enhance, or to buffer against risk. Although there is general agreement
about the interaction, the quantitative and qualitative gene and environment
interactions in coronary heart disease have not been well investigated and should
be a target of future genetic research.
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Depression
Major depression is a common
and recurrent disorder. According to Epidemiological Catchment Area (ECA) data
(Robins & Regier, 1991), at least 5 percent of the United States population
(over 12 million Americans) will experience major depression over the course
of a lifetime. Al-though this estimate is substantial, it is thought to be conservative.
Longitudinal data have confirmed the recurrent nature of depressive episodes
and suggests that recurrence (i.e., appearance of a new episode) occurs in greater
than 50 percent of patients who recover from an initial episode (Frank et al.,
1990).
Major depression can cause
severe impairment in social and physical functioning and is a major precipitating
factor in suicide. It has been associated with higher medical costs, greater
disability, poor self-care and adherence to medical regimens, and increased
morbidity and mortality from medical illness (Katon & Sullivan, 1990).
Women are approximately
two times more likely than men to suffer from major depression (McGrath, Keith,
Strickland, & Russo, 1990), and dysthymia (Robins & Regier, 1991). Thus,
empirical investigations of depression should be a major focus of a women's
health research initiative.
Research Priorities for
Depression
Conduct research to determine
gender-related risk factors for depression.
Considerable research effort
has contributed to advancements in the diagnosis and treatment of major depression.
However, the etiology of depression and why depression is twice as likely in
women as in men is not well understood. Understanding risk factors for onset,
severity, and relapse of depression should be a target of future research. Models
for understanding the etiology of major depression and subtypes of depression
should consider direct and indirect effects of study variables as well as interactions.
Expand research on differential
treatment response by women and men.
Little is known about differential
treatment response patterns for major depression in women and men. This is true
for established and new, psychopharmacological and psychosocial treatments,
and should be a focus of research. Outcome measures should be expanded to include
various measures of cognitive and psychosocial functioning as well as symptom
assessments. Response to psychopharmacological treatments can be considerably
affected by psychosocial experience, and consequently, somatic treatments also
should be included in (a) investigations of differential treatment response
patterns for women and men and (b) the larger research agenda for women's health.
Although effective interventions
often are available, the majority of people with psychological disorders do
not obtain professional treatment. Even among people with a history of three
or more comorbid disorders, less than 50 percent ever obtain specialty sector
mental health treatment (Kessler et al., 1994). Data are needed on barriers
to treatment and on how to facilitate (a) entry into treatment and (b) treatment
compliance and retention, particularly for high prevalence disorders for women
such as depression.
Expand research on risk
factors for depression among different populations of women.
Data are limited on risk
factors for depression in various subgroups of women including lesbians, ethnic
minority women, rural women, and older women. For example, although little research
has been conducted on depression among lesbians, available information indicates
that lesbians may be at higher risk for depression than heterosexual women.
Moreover, the rate of suicide attempts by lesbians, particularly African American
and Latina lesbians, appears higher than among heterosexual women (National
Institute of Mental Health, 1987). Additionally, risk factors for conditions
unique to women, specifically postpartum depression, also should be identified.
Expand research and therapeutic
attention to women with depressive symptoms who do not meet criteria for major
depression.
High utilization of medical
services and social impairment are associated with presence of depressive symptoms
as well as with diagnosed depression. Individuals with depressive symptoms have
comparable, or higher, rates of emergency department use, use of medications,
medical consultations for emotional problems, attempted suicide, and days lost
from work as individuals with diagnosable depression (Glied & Kofman, 1995;
Johnson, Weissman, & Klerman, 1992). Understanding subacute depressive syndromes,
and their relationship to psychosocial functioning, should also be a research
target.
Expand research examining
the effects of treating depression on recovery and survival in women with medical
conditions.
More than 60 percent of
office visits to physicians are made by women, and women have higher morbidity
rates. In addition, the "mortality advantage" over men has been decreasing,
that is, the ratio of male to female deaths has been declining (Rodin &
Ickovics, 1990). Major depression is a source of increased morbidity and an
independent risk factor for mortality in patients with medical conditions (Frasure-Smith,
Lesperance, & Talajic, 1993). Identification and treatment of depression
in women with medical disorders, and in aging women who tend to have higher
rates of medical illness, should be a focus of research.
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Eating Disorders
Approximately 2% of adult
women meet current diagnostic criteria for anorexia nervosa or bulimia nervosa
(Fairburn & Beglin, 1990; Hall & Hay, 1991), and even greater prevalence
rates have been found among adolescent girls (Lucas, Beard, O’Fallon, &
Kurland, 1991; Whitaker et al., 1990). In addition, an estimated 2 to 4 percent
of women experience a clinically significant syndrome of disordered eating that
does not fit current criteria for any of the major eating disorders described
in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III, 3rd ed.,
1980; Striegel-Moore & Marcus, 1995). Eating disorders have a profoundly
negative effect on physical and psychological health and on social and vocational
adjustment. In many cases, these disturbances in health and adjustment are long
lasting or even irreversible. Eating disorders are significantly associated
with a variety of psychiatric disorders, including depression, anxiety disorders,
personality disorders, and substance abuse (Striegel-Moore & Marcus, 1995).
Research Priorities for
Eating Disorders
Improve classification
to better characterize the full spectrum of eating disorders, including the
range of problems grouped under "eating disorders not otherwise specified" (EDNOS),
and to examine the usefulness of binge eating disorder (BED) in particular.
Currently, diagnostic criteria
are based on the clinical picture of individuals presenting for treatment, yet
only a fraction of individuals with an eating disorder ever seek therapy for
their eating disorder. Important questions remain about the proper classification
of eating disorders.
Conduct studies to determine
incidence and prevalence of eating disorders in a representative sample of adolescent
and adult women, including ethnic minority women. Studies should also examine
whether the current diagnostic criteria adequately address the spectrum of eating
disorders in ethnic minority women.
The Epidemiological Catchment
Area (Robins & Regier, 1991) study included only anorexia nervosa but not
bulimia nervosa or "eating disorders not otherwise specified" in its diagnostic
interview. Additionally, virtually excluded from major research studies are
women of color, women from rural communities, and women representing lower SES
groups. Inclusion of a more diverse group of women is critical to developing
an empirically based classification of eating disorders, to testing hypotheses
regarding differential risk based on membership in a particular subgroup, and
to developing therapeutic and preventive interventions that are maximally effective
for all women. For example, preliminary studies among women of color suggest
that they have higher rates of eating disorder symptoms than had been commonly
assumed.
Conduct research to identify
risk factors (such as dieting) associated with different eating disorders.
Dieting is generally thought
to be a risk factor for the development of an eating disorder. But research
that examines the role of dieting in the context of other risk factors would
be useful. Given the pervasive negative stereotypes about obesity and a broad-based
acceptance of dieting as a weight loss strategy, little research has focused
on the potential adverse consequences of dieting. Identifying risk factors for
eating disorders is critical to developing effective prevention programs.
Test etiological models
of eating disorders that encompass both biological and psychosocial pathways
and address patterns of comorbidity.
A range of etiological
factors have been hypothesized to contribute to the development of an eating
disorder. Twin studies and family genetic studies have found significant familial
aggregation of eating disorders; however, whether and to what degree eating
disorders are genetically determined is not clear. Recently, experts have proposed
that the development of an eating disorder may be best understood by models
that encompass both psychosocial and biological pathways.
Conduct studies that will
lead to the development of effective interventions for the full spectrum of
eating disorders.
Significant advances have
been made in the treatment of bulimia nervosa and binge eating disorder. To
date, individuals with eating disorders not otherwise specified, who outnumber
those with anorexia nervosa or bulimia nervosa, have been excluded from controlled
clinical trials. Moreover, in many trials, comorbidity, especially in the form
of substance abuse, has been an exclusion criterion. As a consequence, rigorous
treatment outcome data are missing for the largest number of individuals in
need of treatment. The results of current treatment methods for anorexia nervosa
remain disappointing. Relatively little research has been devoted to developing
improved methods for its treatment.
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HIV and
AIDS
Over the last decade, women
have accounted for an increasing percentage of people with HIV/AIDS in the United
States, rising from 6.6 percent in 1985 to 18 percent in 1994 (CDC, 1994). As
of December 1994, 58,428 American women were diagnosed with AIDS. More than
half of these women are African American; one quarter, White; one fifth, Hispanic
(CDC, 1993a). Although women across the entire life span are living with HIV/AIDS,
the majority are of reproductive age and living in poverty. They also are likely
to be single parents caring for children, some of whom are infected as well.
Furthermore, women with HIV/AIDS may be diagnosed at a later point in the disease
course than men, and they are more likely to face barriers to health and mental
health care, social services, and community support.
These alarming epidemiologic
trends underscore an urgent need to identify and explain the social and behavioral
risk factors for HIV, especially among African American and Hispanic/Latina
women, as well as adolescent girls, regardless of ethnic group membership. Further,
although effective strategies for HIV prevention across and within ethnic groups
are vital, the large number of women already living with HIV/AIDS suggests the
need for research on demographic, psychosocial, disease, and treatment factors
associated with adaptation, quality of life, and long-term survival.
There are major gender
differences in sexual behavior that are critical in the analysis of HIV transmission
in women. Although having multiple partners can be a major risk factor for women,
having only one partner who engages in risky behavior places women at increased
risk. Women appear to have a greater chance than men of becoming infected per
coital act, and younger women may be vulnerable because of their immature cervical
tissue. Younger women also are more likely to have an older, more experienced
partner who places them at risk for sexually transmitted diseases (STDs) and
HIV. Likewise, women may be especially vulnerable to infection as a result of
their patterns of sharing drug injection equipment with a sex partner. Women
are more likely than men to have an injection-drug using partner (Feucht, Stephens,
& Roman, 1990), to have only one needle-sharing partner (Brown & Weissman,
1993), who is typically a sex partner, and to often use drug injection equipment
after their male partner (Castro, Valdiserri, & Curran, 1992).
Research Priorities for
HIV and AIDS
Conduct studies to identify
distinctive patterns of behaviors and social conditions among cultural and age-based
subgroups of women that determine their risk of infection and determine how
women protect themselves against sex with risky partners.
The extent to which patterns
of sexual behaviors and intravenous drug use are similar among African American,
Hispanic, and adolescent women of all backgrounds is not well understood (Amaro,
1995; Cochran & Mays, 1989). Ethnic differences in high-risk sexual activity,
substance abuse, and HIV within the context of familial and peer group networks
also have yet to be identified.
Women tend to have substantially
fewer sex partners than men. Consequently, it is crucial that prevention efforts
help women understand the risk level associated with particular partners. Research
needs to explore sexual communication between heterosexual partners within and
across different ethnic groups. For example, to what extent and under what conditions
do men disclose risk factors for HIV and other STD infection, disclose their
intravenous drug use, and/or disclose their serostatus? To what extent and under
what conditions do women communicate in a sexually assertive manner to find
out sexual history information from potential partners? How are decisions made
regarding condom use? How do relationship dynamics influence needle sharing?
Additional research on the role of sexual coercion, sexual assault, and domestic
violence in the transmission of HIV also is vital to prevention efforts.
Increase research on predictors
of risky behaviors focusing on issues such as power in various relationships,
physical and/or sexual abuse, and alcohol and other drug use; conduct research
that will translate identified predictors of risk into effective interventions
to reduce risk.
Several factors have been
found to increase women’s vulnerability to HIV infection, including history
of sexual abuse, current experience of physical abuse in the primary relationship,
sexual assertiveness, and alcohol and other drug use. Research should examine
these possible predictors of risk separately for women from different ethnic
groups. Moreover, models of behavior change should be developed and evaluated
that incorporate issues of reproduction as well as STD prevention for women.
These models should be based on issues identified with diverse populations of
women across age, educational, and economic backgrounds and should incorporate
healthy sexual practices.
Evaluate programs designed
to decrease women's risk associated with injection drug use (e.g., treatment
and needle exchange programs).
Effective, research-based
substance use prevention and drug treatment programs for women are vital. Outcome-based,
comprehensive programs that are gender and culture specific and provide training
in jobs skills, AIDS awareness, sexual assertiveness, childcare, and sexual
abuse survivor issues should be developed. A number of model programs are currently
under way that require careful evaluation.
Needle exchange programs
also should be evaluated, especially their effectiveness for women. Some studies
indicate that women have less access to needle exchange programs than men (Brown
& Weissman, 1993; CDC, 1993a). Increasing women's utilization of such programs
is a high priority because it can save lives immediately.
Determine the effects
of HIV/AIDS on women’s psychological functioning.
Few studies have investigated
the psychological sequelae of HIV and AIDS among women and their families. Longitudinal,
comprehensive research needs to address the relationships among sociodemographic
factors, disease and treatment factors, drug use, caregiving, sexual abuse,
domestic violence, and continued substance abuse or high risk sexual behavior
following diagnosis, coping, resilience, adjustment difficulties, isolation,
social support, quality of life, immune functioning, and survival among women
with HIV/AIDS. In addition, these psychosocial and behavioral factors should
be evaluated in women with HIV/AIDS who also are homeless, disabled, have enduring
mental illness or are older. This research should assess ethnic and cultural
expectations for women such as providing caretaking functions for others and
how these roles are carried out over the course of HIV infection. Research in
these areas is necessary for the development of outcome-based interventions
aimed at enhancing self-care, coping, resilience, and quality of life for the
broad range of women and families living with HIV/AIDS.
Conduct studies to assess
barriers to obtaining medical and psychological treatment for women with HIV
infection or AIDS.
Innovative, outcome-based
programs that reduce barriers to health care, mental health care, and social
services for women with HIV/AIDS should be developed. Community-based programs
targeting women of color and families must address barriers (e.g., poverty,
language, child care, transportation, gender and ethnic bias in services, and
HIV-related discrimination) to care and service.
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