Chronic illnesses can be defined as many different conditions and disorders, and the resources included here range from breast cancer to arthritis to OCD to HIV/AIDS. But it is clear, as Susan Wendell writes in her 2001 article, that “chronic illness is a major cause of disability, especially in women” (p. 17). These resources deal with the diverse issues for women with chronic conditions, including being a parent with a chronic condition, caregiving issues, a wide range of coping strategies, and personal experiences.
Abatemarco, D. J., Catov, J. M., Cross, H., Delnevo, C., & Hausman A. (2008, August). Factors associated with Zidovudine receipt and prenatal care among HIV-infected pregnant women in New Jersey. Journal of Health Care for the Poor and Underserved, 19(3), 814-828.
Despite reductions in perinatal HIV transmission, cases continue to occur. To determine factors associated with zidovudine (ZDV) receipt among HIV-infected pregnant women we merged three data sets for women in New Jersey in 1995–1997, identifying 395 HIV-infected pregnant women. Half received two arms of ZDV prophylaxis. Attendance at five or more prenatal visits was the strongest independent factor related to ZDV receipt (OR 6.37, 95% CI 3.84, 10.57). Half (49.0%) had limited prenatal care. AIDS diagnosis, race/ethnicity, and drug use were also independently related to ZDV receipt. Post hoc analysis revealed that being unmarried, Black, multiparous, having no insurance, and illegal drug use were associated with limited prenatal care. Although the U.S. has seen reductions in HIV perinatal transmission, our research showed that HIV-infected women who did not get prenatal care were less likely to receive two arms of ZDV prophylaxis. A wide public health net that brings all women into care is necessary to reduce perinatal transmission further.
Abdel-Nasser, A., & Ali, E. I. (2006, November). Determinants of sexual disability and dissatisfaction in female patients with rheumatoid arthritis. Clinical Rheumatology, 25(6), 822-830.
Previous research has identified two main problems of sexuality in female rheumatoid arthritis (RA) patients: difficulties in sexual performance and diminution of sexual desire and satisfaction. This study attempts to determine the clinical and psychological factors significantly contributing to sexual disability and dissatisfaction in female RA patients. Ninety consecutive female RA outpatients were assessed by a gynecologist. After excluding patients who were not sexually active and those with genital tract abnormalities, 52 patients were examined and investigated rheumatologically and given questionnaires assessing sexual performance, desire, and satisfaction, as well as demographic variables, pain, disability, anxiety, and depression. Following a correlation analysis, the contributions of demographic, disease, and psychological variables to sexual disability and dissatisfaction were explored by hierarchical and stepwise regression. Thirty-two patients (62%) had difficulties in sexual performance including nine patients (17%) who were totally unable to engage in sexual intercourse because of arthritis. Sexual desire or satisfaction were diminished in 24 patients (46%) and completely lost in 24 patients (46%). Sexual disability was not significantly correlated with any psychodemographic variables, but with parameters of disease activity (p<0.001), Health Assessment Questionnaire (HAQ)-disability (p<0.001), hip (p<0.001) but not knee joint disease, seropositivity (p<0.05), and diminished desire (p<0.05). However, HAQ-disability and hip joint disease were the only independent and significant determinants of sexual disability in the regression model after controlling for the effects of age and disease duration. These variables together explained 64% of the variance of sexual disability. On the other hand, pain (p<0.001), age (p<0.05), and depression (p<0.05) were the significant determinants in the regression model for sexual dissatisfaction, all together contributing 36% of its variance. More than 60% of female RA patients experience variable degrees of sexual disability and diminished sexual desire and satisfaction. Difficulties in sexual performance are related more to overall disability and hip involvement, while diminished desire and satisfaction are influenced more by perceived pain, age, and depression.
Abraido-Lanza, A. F., Chao, M. T., & Gammon, M. D. (2004, August). Breast and cervical cancer screening among Latinas and non-Latina whites. American Journal of Public Health, 94(8), 1393-1398.
Chao et al examine whether Latinas differ from non-Latinas in having undergone recent mammography, clinical breast examination, or Papanicolaou testing, as well as the contribution of sociodemographic and health care variables to screening. They conclude that Latinas ethnicity does not predict breast and cervical cancer screening behavior independent of sociodemographic and structural factors.
Alexander, R. W., Bradley, L. A., Alarcon, G. S., Tirana-Alexander, M., Aaron, L. A., Alberts, K. R., Martin, M. Y., & Stewart, K. E. (1998). Sexual and physical abuse in women with fibromyalgia: Association with outpatient health utilization and pain medication usage. Arthritis Care and Research, 11(2), 102-115.
Article about the relationship between sexual and/or physical abuse, health care utilization, and pain medication usage in female patients with fibromyalgia. Participants were 75 women with fibromyalgia. It was found that 57% reported a history of sexual or physical abuse. Compare to non-abused patients, abused patients reported significantly greater utilization of outpatient health care services for problems other than fibromyalgia and greater use of medications for pain (P<0.0! 25). Abused patients were also characterized by significantly greater pain, fatigue, functional disability, and stress, as well as by a tendency to label dolorimeter stimuli as painful regardless of their intensities. Additional analyses suggested that the high frequency of sexual/physical abuse was associated primarily with seeking health care for chronic pain rather than the fibromyalgia syndrome itself or genetic factors.
Altschuler, J., & Dale, B. (1999). On being an ill parent. Clinical Child Psychology and Psychiatry, 4(1), 23-37.
Limited research and clinical attention has been paid to the experience of being an ill parent, so that parents are given little support in preparing for the effect their illness might have on their children. In this article, we explore how parents manage being a patient and a parent at the same time, focusing on three themes which have emerged: parental fears that illness renders them less fit to meet the needs of their children; dilemmas about balancing self-care with the care of others; and how the illness can evoke feelings that relate to previous trauma, influencing their responses to their children in the present. We highlight how these issues do not happen in isolation, but in the context of ongoing intimate, family relationships. We suggest that if they are not addressed, parents and children are left unprepared to meet the demands which illness poses. Finally, we examine the implications for clinical work in this area.
Andrasik, M. P., Rose, R., Pereira, D., & Antoni, M. (2008, August). Barriers to cervical cancer screening among low-income HIV-positive African American women. Journal of Health Care for the Poor and Underserved, 19(3), 912-925.
This study elucidates the perspective of low-income HIV-positive African American women who have not received cervical cancer screening for five or more years, on the barriers they face in accessing and using reproductive health care. We focused on how women who live in a severely economically depressed and racially segregated neighborhood experience barriers to cervical cancer screening. Andersen’s Behavioral Model of Health Services Use, which allows for the organization of conditions and situations that bar utilization of health services, served as the theoretical framework. Findings from individual semi-structured interviews with 35 participants revealed the importance of psychological and emotional barriers as well as the more commonly reported economic, social, and health care system barriers. We suggest how access to care for this population can be increased by including psychological and emotional components in intervention efforts.
Åsbring, P., & Närvänen, A. (2004). Patient power and control: A study of women with uncertain illness trajectories. Qualitative Health Research, 14(2), 226-240.
The authors interviewed 12 women diagnosed with chronic fatigue syndrome and 13 with fibromyalgia with the aim of determining the strategies they perceive themselves as using to gain control over their situation during the health care process. The results highlight various strategies that the women report applying to find a way of managing the illness and to influence caregivers. They describe, for example, how they try to gain control over their situation by acquiring knowledge about the illness. The women also describe various power strategies they use in their interaction with the caregivers to take command of their situation, namely exiting, noncompliance, confrontation, persuasion/insistence, making demands, and demonstrative distancing.
Areskoug-Josefsson, K., & Öberg, U. (2009, December). A literature review of the sexual health of women with rheumatoid arthritis. Musculoskeletal Care, 7(4), 219-226.
Sexual health problems are common for women with Rheumatoid Arthritis, RA. Sexual health is covered in the International Classification of Functioning, Disability and Health (ICF) by two different fields: sexual function and intimate relationships, which are included in the ICF core sets for RA. Most patients with RA are female, and there are differences concerning sexual health between women and men with RA. The aim of this study was to explore the literature concerning the effects of RA on the sexual health of female patients, and also recommend solutions to improve the sexual health of women with RA. Sexual health problems can occur before, during and after sexual activities, and can affect women’s sexual health in different perspectives. The investigated areas concerning female RA-patients and sexual are general sexual problems, sexual satisfaction, sexual desire, sexual performance, and sexual functioning. RA affects sexual health as a result of pain, reduced joint mobility, fatigue, depression and body image alterations. The investigated material provides few solutions to sexual health problems of female RA-patients. The most commonly mentioned solution is increased information and communication between health professionals and patients. Some of the studies recommend physiotherapy. Further research is needed to understand which types of intervention can help women with RA to improve their sexual health.
Axtell, S. (1999). Disability and chronic illness identity: Interviews with lesbians and bisexual women and their partners. Journal of Gay, Lesbian, and Bisexual Identity, 4(1). Retrieved March 31, 2005 from http://www.glma.org/programs/lhf/
reports/AxtellS_Disability.pdf.
Disability rights activists and cultural workers are articulating disability identity and culture. Through interviews with lesbians and bisexual women with disabilities or chronic illnesses and their partners, the present study examined disability/chronic illness identity on the level of individual; couple, and community. Participants shared differing perspectives about how disability/chronic illness identity relates to other aspects of identity, and about whether disability/chronic illness identity is fluid or constant. They described several challenges they have encountered in developing disability/chronic illness identity. Couples talked about developing boundaries and balance in their relationships, and about how disability or chronic illness has strengthened their relationships. A number of participants spoke about identity as intimately linked with community. Implications for community building are discussed.
Barker, K. K. (2005). The fibromyalgia story: Medical authority and women’s worlds of pain. Philadelphia: Temple University Press.
More than six million Americans—most of them women—have been diagnosed with fibromyalgia syndrome (FMS), a disorder that produces musculo-skeletal pain and fatigue. In the absence of visible evidence, a well-understood cause, or effective treatment, many have questioned whether FMS is a “real” illness. Amidst the controversy, millions of women live with their very real symptoms. Rather than taking sides in the heated debate, Kristin Barker explains how FMS represents an awkward union between the practices of modern medicine and the complexity of women’s pain. Using interviews with sufferers, Barker focuses on how the idea of FMS gives meaning and order to women beset by troubling symptoms, self-doubt, and public skepticism. This book offers a fresh look at a controversial diagnosis; Barker avoids overly simplistic explanations and empathizes with sufferers without losing sight of the social construction of disease and its relation to modern medical practice. An excerpt can be found online at: http://www.temple.edu/tempress/chapters_1400/1685_ch1.pdf.
Barlow, J. H., & Williams, B. (1999, January). ‘I now feel that I’m not just a bit of left luggage’: The experiences of older women with arthritis attending a personal independence course. Disability & Society, 14(1), 53-64.
Few interventions have directly addressed the needs of older people with arthritis. One exception is a recent initiative developed by Arthritis Care, a voluntary organisation working with and for people with arthritis in the UK. The initiative comprised two Phases. In Phase 1, older people attended a well established course designed to increase participants’ sense of control over their own ability to orchestrate the management of their arthritis-related needs. The focus of this paper is on Phase 2 of the initiative, a Personal Independence Course, which introduced older people to the social model of disability and encouraged them to take an active role in the community. Although Arthritis Care have considerable experience of working within a social model framework with younger people, this paper presents the results of the first Personal Independence Course targeting older adults with arthritis. Data were collected in a series of semi-structured interviews yielding rich insight into the lives of this often neglected group of older people.
Barshay, J. M. (1993). Another strand of our diversity: Some thoughts from a feminist therapist with severe chronic illness. In M. Fine (Ed.), Women with disabilities: Found voices [Feature issue]. Women and Therapy, 14(3/4), 159-69.
This study represents the author’s attempt to open the subjects of disability and accessibility-for-all in the women’s community and specifically the feminist therapy community. This study is a revised version of a presentation given at the May 1990 Advanced Feminist Therapy Institute Conference in Chicago. The author’s illnesses, Chronic Fatigue Immune Dysfunction Syndrome and Multiple Chemical Sensitivity/Environmental Illness are “women’s illnesses,” and, as such, are generally misunderstood and ignored. For this reason, the author describes in some detail her personal experiences, physical and emotional, of becoming and being severely chronically ill. The author discusses shortcomings in the women’s therapy community’s response to disabled women and suggests some analysis of the phenomenon of what she calls the “active unwillingness to know.”
Bendel, M. (2006, Spring). More miracles needed: Breast cancer among Palestinian women. Bridges: A Jewish Feminist Journal, 11(1), 33-38.
“If you are a Palestinian woman with breast cancer, your chances of survival are poor. Breast cancer is the second most common cause of death among Palestinian women, even though the prevalence rate is much lower among Arab women than Western women. And the number is dramatically on the rise. Conservative estimates suggest seven out of ten Palestinian women with breast cancer will die” (p. 33).
Boster, D. H. (2009, Summer). An “epeleptick” bondswoman: Fits, slavery, and power in the antebellum South. Bulletin of the History of Medicine, 83(2), 271-301.
Epilepsy, as nineteenth-century observers understood the disease construct, was a feared diagnosis associated with insanity and uncontrollability. Cases of epileptic fits in slaves-whether they were considered genuine or feigned- highlighted deep struggles among white masters, physicians, and slaves themselves over the control of African American bodies. Some slaves who experienced fits were subjected to prolonged experimental treatments at the hands of physicians and white masters. Although Southern medical sources largely ignored the connection between epilepsy and trauma in slaves, abolitionists and ex-slave narratives published in the North used epilepsy as a representation of the institution’s cruelty. Some white observers thought that slaves with epilepsy were prone to malingering; epileptic fits were also a tool of slave resistance and had a significant role in slave sale negotiations. I use the case study of a fifteen-year-old bondswoman in Virginia, diagnosed with epilepsy in 1843, to illustrate the significance of the disease in the lives of African American slaves.
Bourke, K. (Ed.). (2007). Special Issue on Gender Inequality and HIV/AIDS. Health Care for Women International, 28(8).
“This month’s issue of Health Care for Women International presents research into various aspects of how gender inequality and HIV-related stigma combine to affect girls and women. Individually and together, the articles reinforce a larger point: HIV/AIDS is both exposing and exacerbating the long-existing disadvantage and discrimination under which women live. HIV/AIDS policies and programs, across epidemics, must address this reality to be effective” (pp. 677-678).
Articles included in this feature issue include:
- Women and HIV/AIDS in China: Gender and Vulnerability
- Women’s Choice of Strategies for Improving Utilization of HIV/AIDS Screening Services
- The Impact of Migration on HIV Prevention for Women: Constructing a Conceptual Framework
- The Lived Experiences of HIV-Positive, Pregnant Women in Thailand
- Sexual Coercion, HIV-Related Risk, and Mental Health Among Female Sex Workers in China
Boyle, J. S., Bunting, S. M., Hodnicki, D. R., & Ferrell, J. A. (2001). Critical thinking in African American mothers who care for adult children with HIV: A cultural analysis. Journal of Transcultural Nursing, 12(3), 193-202.
This research study defines critical thinking in nursing and examines the thinking processes revealed by 15 African American mothers who are caregivers to adult children with HIV. The purpose of this cultural analysis was to compare the mothers’ decision-making processes with their critical-thinking processes. Their culture, heritage, faith, and value of family influenced caregivers in this study. Their testimony revealed the patterns of creating a different path of care, weaving together resources, choosing among negative alternatives, and selecting stories to tell. Mothers’ decisions were based on complex and holistic knowledge of their situations and culture and could be termed multilogical, a type of thinking considered necessary for managing complex situations. Health providers can benefit from an understanding of these decision-making processes.
Bradley, C. J., Given, C. W., & Roberts, C. (2003, November). Correlates of late stage breast cancer and death in a Medicaid-insured population. Journal of Health Care for the Poor and Underserved, 14(4), 503-515.
The authors examine how patient and insurance characteristics influence breast cancer state at diagnosis and survival in women insured by Medicaid. Two risk factors were identified for women under 65: absence of Medicaid enrollment prior to diagnosis and residency in a nursing home. Women who were not Medicaid insured prior to diagnosis were nearly two times more likely to have late stage disease relative to women during the month of diagnosis, and women receiving nursing home benefits had 2.47 higher odds of late stage disease relative to women who did not receive this type of care. These two variables also influenced the likelihood of death. Additional investigation is needed to evaluate breast cancer in nursing homes and to understand what, if any, care women receive prior to Medicaid enrollment.
Broom, D. H. (2001). Reading breast cancer: Reflections on a dangerous intersection. Health, 5(2), 249-268.
Because breast is the most common female cancer, it is no surprise that it has prompted lobbying and extensive clinical research. Many women have written autobiographical accounts of their diagnosis and treatment, but there has been little effort to apply the perspectives of feminist or other social theory to our understandings of breast cancer. I propose that breast cancer is located at a meeting point between (at least) four sets of discourses and practices: those relevant to all life-threatening illness, those surrounding most or all cancers, those informing female-specific conditions and conditions of the breast specifically. This article considers how each of those domains defines and informs experiences of breast cancer and its treatment. I offer a reflection on that four-way intersection, and a move towards specifying how sociocultural fears about death, disease, sexuality and femininity converge to isolate and silence women who are diagnosed, to frame their choices and experiences, and to shape their stories.
Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., & Gasior Altman R. (2004, January). Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness, 26(1), 50-80.
Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories: health access movements seek equitable access to health care and improved provision of health care services; constituency-based health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and embodied health movements (EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body to social movements, especially with regard to the embodied experience of people with the disease; 2) they typically include challenges to existing medical/scientific knowledge and practice; and 3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research and expanded funding. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement.
Bucharski, D., Reutter, L. I., & Ogilvie, L. D. (2006, September). “You need to know where we’re coming from”: Canadian aboriginal women’s perspectives on culturally appropriate HIV counseling and testing. Health Care for Women International, 27(8), 723-747.
The purpose of this qualitative descriptive study was to determine Canadian Aboriginal women’s perspectives on culturally appropriate HIV counseling and testing. Data were collected through semistructured individual interviews with 7 Aboriginal women, and one focus group, in a western Canadian city. Four major categories were elucidated through thematic content analysis: Aboriginal women’s life experiences that may influence their risk of HIV infection and their response to testing; barriers to HIV testing; guiding principles of the ideal HIV testing situation; and characteristics of culturally appropriate HIV testing. The fear of being judged by both the Aboriginal and non-Aboriginal communities and the need for sensitivity to the historical and current context of Aboriginal women’s life experiences were pervasive themes throughout the findings.
Bunting, S. M. (2001, January-February). Sustaining the relationship: Women’s caregiving in the context of HIV disease. Health Care for Women International, 22(1-2), 131-148.
In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women’s caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, “sustaining the relationship” as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person’s relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.
Burell, G., & Granlund, B. (2002). Women’s hearts need special treatment. International Journal of Behavioral Medicine, 9(3), 228-242.
Coronary heart disease (CHD) is the leading cause of death for both men and women in the Western world. Some studies show that the observed decline in cardiovascular mortality is not as pronounced among women as among men. There is a growing awareness that most earlier studies both on primary and secondary risk factors, diagnosis, prognosis, and rehabilitation have focused mainly on men. Thus, there is a need to develop knowledge about women with CHD and to address gender issues in treatment and rehabilitation strategies. Negative affect and emotions increase risk and may interfere with effective cardiac rehabilitation. Therefore, methods for coping with emotional stress need to be included in treatment regimens after a coronary event. The feasibility of a stress management program for women with CHD was assessed in a pilot study. The program consisted of twenty 2-hr group sessions during 1 year, with 5 to 9 participants per group. The pilot study showed that this treatment program had a low dropout rate and resulted in improvement in quality of life and reduction in stress and symptoms. Further work to optimize psychosocial interventions for women with CHD is needed.
Burckhardt, C. S., Liedberg, G. M., Henriksson, C. M. & Kendall, S. (2006). The impact of fibromyalgia on employment status of newly-diagnosed young women: A pilot study. Journal of Musculoskeletal Pain, 13(2), 31-41.
Objectives: To describe employment loss in young women with newly diagnosed fibromyalgia syndrome [FMS] and to identify variables that may explain early loss of employment.
Methods: In this pilot studsy, 94 young women [18-39 years old] in the United States [USA] and Sweden completed demographics, global rating scales, and standardized questionnaires, including the Fibromyalgia Impact Questionnaire, SF-36 General Health Subscale, Beck Depression Inventory, Beck Anxiety Inventory, Arthritis Self-Efficacy Scale, Arthritis Impact Measurement Scales II Social Support Subscale, and Job Flexibility Scale, three times during the first 12 to 15 months after diagnosis.
Results: At the time of diagnosis, 60 percent were in paid employment [USA 71 percent, Sweden 49 percent]. When the participants entered the study, within three months of diagnosis, only 46 percent were working [USA 56 percent, Sweden 37 percent]. Twelve months later, 41 percent were working [USA 55 percent, Sweden 28 percent]. Younger age, poorer physical functioning, and lower self-efficacy for pain management along with higher symptom interference with ability to do any work, and pain severity predicted unemployment with 75 percent accuracy.
Conclusions: An early and notable decrease in the percentage of young women diagnosed with FMS and working in paid employment was seen in this pilot study. Because most of the job loss was associated with FMS symptoms, a larger study of strategies to control or ameliorate these symptoms in the work setting should be undertaken.
Burke, M., & Flaherty, S. M. J. (1993, January). Coping strategies and health status of elderly arthritic women. Journal of Advanced Nursing, 18(1), 7-13.
With increasing age many elderly people experience personal and social losses. Physical health declines, there is a loss of vigour and an increased susceptibility to disease. Osteoarthritis, the most common form of arthritis in the elderly, is the greatest cause of disability and limitation of activity in older populations. The purpose of this descriptive study was to investigate how elderly women cope with the physical impairment and pain associated with osteoarthritis and to examine the relationship between coping strategies and health status. The sample consisted of 130 women over 75 years, living alone in one of five life care communities. Three instruments were used to collect data: The Ways of Coping Scale, The Arthritis Impact Measurement Scale and The Musculoskeletal Impairment Index. Pearson product-moment correlations and stepwise multiple regression were used to analyse data. The mean age of the sample was 83.2 years and over 40% had attained bachelor’s degree or higher. The most utilized coping strategy was self-control. The study variables accounted for 49% of the variance in physical health and 20% in psychosocial health.
Caban, M. E., Kuo, Yong-Fang, Mahnken, Jonathan D., Nosek, Margaret A. & Freeman, J. L. (2008). Mammography use may partially mediate disparities in tumor size at diagnosis in women with Social Security disabilities. Women & Health, 46(4), 1-17.
Objective: This study determined the association between screening mammography and tumor size at diagnosis in older women whose original reason for entitlement to Medicare benefits was disability (SSDI).
Methods: A retrospective study of female Medicare beneficiaries older than 69 years diagnosed with breast cancer using Surveillance Epidemiological End Results (SEER)-Medicare linked database. Multiple linear regression techniques were used to determine the effect of screening mammography use on tumor size.
Main Findings: The total number of women was 413 with SSDI and 8,989 without. Bivariate analysis showed that significantly fewer women with SSDI used screening mammography (45% vs. 38%, P = 0.0006) during the two years prior to diagnosis. Mean tumor size at diagnosis was 2.91 mm (95%, CI = 1.10, 4.73) larger in the group with SSDI.
Conclusion: This study found that older women whose original reason for Medicare benefits was disability present with larger tumors at breast cancer diagnosis compared to those who were not. Screening mammography may partially mediate the disparity.
Cahn, S. (2003, Spring). Come out, come out whatever you’ve got! Or, still crazy after all these years. Feminist Studies, 29(1), 7-18.
Cahn relates her experience in living as a lesbian and describes how she struggled to cope with her chronic fatigue syndrome. Many people see homosexuals as disgusting, sinful, tolerable, abominable, and crazy. Although their is no proof that homosexuality and mental disorder is correlated, many psychiatrists still believe that several mental diseases are caused by homosexuality, and are finding reparative therapies and reconversion programs to treat homosexuals.
Caplan, P. J. (2001). Chronic fatigue syndrome: A first-person story. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 23-43.
Real physical illnesses are often misinterpreted and misdiagnosed as psychological or at least as psychogenic problems, especially in women and especially when the illness is not well understood. This is a first-person story about the author’s history of what ultimately was diagnosed as Chronic Fatigue Syndrome. The frustrating political, social, medical, and economic contexts of living with this syndrome are described on the basis of the author’s experience, and suggestions are offered for therapists working with people who suffer from or may suffer from this and similar medical problems.
Charmaz, K. (1999). Stories of suffering: Subjective tales and research narratives. Qualitative Health Research, 9(3), 362-382.
The following analysis addresses relationships between suffering and the self. It emphasizes subjects’ stories of experiencing chronic illness and their relationship to the construction of self. A symbolic interactionist perspective informs the analysis. Topics include forms of suffering, the moral hierarchy of suffering, relationships between gender and moral status in suffering, and meanings of subjects’ stories. The major argument is that suffering is a profoundly moral status. Placement in the moral hierarchy of suffering affects whether and how an ill person’s stories will be heard.
Chirikos, T. N., Russell-Jacobs, A., & Jacobsen, P. B. (2002). Functional impairment and the economic consequences of female breast cancer. Women & Health, 36(1), 1-20.
Recent trends in breast cancer diagnosis and mortality suggest that long-term survivors are now more likely to be functionally impaired and, hence, more likely to experience adverse economic outcomes. This study tests whether women who have survived breast cancer for at least five years exhibit more, or more severe, functional impairments than otherwise similar women without breast cancer. It also tests whether women with more severe impairments experience poorer economic outcomes attributable to their functional status.
A group of 105 breast cancer survivors was interviewed to obtain data on health and economic changes in the five-year period since diagnosis and initial treatment. An age- and work-matched group of 105 women without cancer was also interviewed to obtain the same data over the same time period. Key changes in the functional status of the subjects as well as economic outcomes such as changes in market earnings, household income, and insurance coverage were measured. Whether impairment is more severe in the breast cancer group than the comparison group was then tested statistically; whether economic outcomes are more adverse in more impaired than less impaired women regardless of their breast cancer status was also tested.
The analysis turned up statistically significant evidence in regard to each of these relationships. Breast cancer survivors were more likely than controls to be functionally impaired at the five-year benchmark. Impaired women, in turn, were more likely to reduce work effort and experience downturns in market earnings, among other things. Policy and research implications are discussed.
Chrisler, J. C. (2001). How can feminist therapists support women with autoimmune disorders? In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 7-22.
Although many autoimmune disorders are unfamiliar to most Americans, together these disorders represent a significant proportion of the total incidence of chronic disease. Women are diagnosed with autoimmune disorders more often than men, and the sex difference is substantial in some disorders. The peak age of onset of these disorders is from early adulthood to mid-life, which violates the popular assumption that only older people experience chronic, debilitating illnesses. The unpredictability of autoimmune disorders, the knowledge that they are progressive and incurable, the possibility of deleterious treatment side-effects, and the general public’s unfamiliarity with autoimmune disorders combine to make living with one a frustrating and isolating experience. The purposes of this article are to educate feminist therapists about autoimmune disorders and to encourage feminist therapists to use their expertise to help support women who are adjusting to life with an autoimmune disorder.
Ciambrone, D. (2002). Informal networks among women with HIV/AIDS: Present support and future prospects. Qualitative Health Research, 12(7), 876-896.
Given the importance of informal support in the lives of chronically ill people, it is imperative to gain a deeper understanding of the nature and impact of HIV-positive women’s informal networks. Through interviews with 37 women with HIV infection, the author explores women’s social network composition and the extent to which these networks appear to facilitate or mediate the disruption caused by HIV/AIDS. Women reported having at least one person, usually a family member, on whom they could depend for emotional support. Although women report adequate levels of current support, the author questions the likelihood that their informal networks will provide support further along in women’s illness trajectories.
Ciambrone, D. (2003). Women’s experiences with HIV/AIDS: Mending fractured selves. Binghamton, NY: Haworth Press.
Women’s Experiences with HIV/AIDS: Mending Fractured Selves examines the impact of HIV/AIDS on women, the fastest-growing subgroup of the HIV-infected population of the United States. Based on interviews with HIV-infected women, the book gives voice to their experiences. This powerful text offers a firsthand view of what it is like to live day-to-day as a woman with the added burden of HIV/AIDS.
Consedine, N. S., Horton, D., Magai, C., & Kukafka, R. (2007, August). Breast screening in response to gain, loss, and empowerment: Framed messages among diverse, low-income women. Journal of Health Care for the Poor and Underserved, 18(3), 550-566.
Framed messaging has emerged as an important means of promoting a number of health behaviors, including breast cancer screening. However, studies of message framing have infrequently considered race and income as possible moderators of framing effects, despite their importance to screening behavior. The current study examined whether demographic characteristics moderated participant responses to message framing. In the study, 102 Black and 42 White low-income, low-screening women were randomized to a loss, gain, or empowerment frame telephone intervention and re-contacted at 6 and 12 months. Contrary to expectation, there was no main effect for framing condition, although both loss and empowerment conditions elicited superior screening than the gain condition at 12 months. Income proved an important moderator of framing effects, interacting with both condition and race to influence screening. Message frames may differ in the amount of time they require to manifest in behavioral outcomes and may lead to changes in different screening outcomes. Understanding how framing effects vary as a function of key demographic characteristics such as race and income is likely to prove important as such variables facilitate targeting of frames.
Cramer, E. P., & Gilson, S. F. (1999, January). Queers and crips: Parallel identity development processes for persons with nonvisible disabilities and lesbian, gay, and bisexual persons. In D. Atkins & C. Marston (Eds.), Queer and Dis/Abled [Special issue]. International Journal of Sexuality and Gender Studies, 4(1), 23-37.
Traditional models of identity development are inadequate when applied to lesbian, gay, and bisexual (LGB) persons and persons with disabilities. The identity development and life experiences of persons with disabilities and LGB persons are similar in many respects including being raised/socialized by persons who are not a part of that group, and being educated to conform to the standards of behavior and appearance of the dominant culture. This article describes and critiques four models of identity development as applied to LGB persons and persons with nonvisible disabilities: stage/linear, issues/milestone experiences, social constructionist, and interactional. The authors propose an interactional identity development model for persons with disabilities and LGB persons that incorporates the significance of bio-psycho-social-cultural contexts, the influence of multiple identities, the fluidity of identity formation, and the importance of language.
Crooks, D. L. (2001, January-February). Older women with breast cancer: New understandings through grounded theory research. Health Care for Women International, 22(1-2), 99-114.
Breast cancer incidence increases by decade of life, significantly affecting the lives and well-being of older women. In a critical analysis of three decades of quantitative and qualitative research literature. I found an indication that something changed over the course of time that allowed women to adjust to breast cancer and resolve emotional turmoil. However, it was not clear what was “adjusted,” or what constituted the process that allowed women to restore meaning within illness. In this paper I discuss the benefits of using a grounded theory approach in the study of older women with breast cancer. A brief overview of the study is given for context. The main focus of this paper is on the contributions of grounded theory research to new understandings of the cancer experience for older women. Contrary to findings in the quantitative literature, this study raised awareness of several issues: the myth of burden in researching older women, willingness to participate in decision making around treatment, ageism, and positive collusion in communication with health professionals.
Crooks, V. A. (2007). Women’s experiences of developing musculoskeletal diseases: Employment challenges and policy recommendations. Disability & Rehabilitation, 29(14), 1107-1116.
Purpose. To answer three specific questions: (i) How do women experience the workplace after the onset of a musculoskeletal disease; (ii) What employment policy and programme suggestions can they offer for ways to better support chronically ill women in their abilities to maintain workforce participation; and (iii) How are these women’s employment policy and programme recommendations informed by their own lived experiences and desires?
Method. In-depth interviews were conducted with 18 women who had developed musculoskeletal diseases while involved in the labour market. Data were coded and analysed thematically.
Results. Participants identified three common workplace barriers experienced and three types of workplace accommodations commonly requested. They offered four specific employment policy and programme recommendations for ways to better support women who develop musculoskeletal diseases in maintaining labour market participation. It is found that their employment policy and programme recommendations are informed by their own experiences in the workplace and desires for being supported in maintaining involvement in paid labour.
Conclusions. Creating employment programmes and policies that support chronically ill women in their attempts to remain involved in the workforce based on how much paid labour they are able to perform and where they are best able to work is of the utmost importance.
Crooks, V. A., Chouinard, V., & Wilton, R. D. (2008, December). Understanding, embracing, rejecting: Women’s negotiations of disability constructions and categorizations after becoming chronically ill. Social Science & Medicine, 67(11), 1837-1846.
The purpose of this article is to elucidate the various responses women have to being, or not being, categorized as disabled within specific spheres (e.g., medical, state) or places (e.g., doctor’s office, work) after developing a contested chronic illness. Drawing on interviews conducted with 55 women living with fibromyalgia syndrome in Ontario, Canada, we examine how they come to understand various constructions of disability and whether or not they reflect their sense of self, and how and why they either embrace or reject external categorizations of themselves as disabled by the state or medical professionals. In doing so we contribute to the limited geographic literature which stresses the importance of spatiality and ways of being in place to ill and impaired persons’ negotiations of the self and relationships with others. We find that negotiating disability was, for many, an emotionally charged and complex process, drawing on one or more strategies: reluctantly employing some meanings associated with ‘being disabled’ to achieve material ends, creating an understanding of disability that is most in keeping with one’s sense of self, embracing other meanings to the extent that they offer a legitimate basis for identity, and/or rejecting disability in the interests of sustaining an existing identity. For those women in need of forms of state assistance such as income support and health care, state institutions exert powerful pressures to come to terms with what disability means in one’s life – particularly as medical and state authorities classify people as ‘disabled enough’ or ‘not disabled enough’ for entitlement to state resources.
Crose, R., Feldman, D., & Gordon, P. A. (1998, July-September). The meaning of disability: How women with chronic illness view their experiences. Journal of Rehabilitation, 64(3), 5-11.
The purpose of this descriptive study was to examine perceptions regarding the experience of disability for 40 women with chronic illness. The participants, all between the ages of 28 and 79, were diagnosed with either multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, osteoporosis, or a combination of these disorders. They were interviewed concerning their beliefs as to whether they now see themselves as disabled. The majority of women did not view themselves as persons with disabilities despite the oftentimes immense limitations now evident in their lives. They did report, though, that due to their own illness experience, their prior assumptions regarding persons with disabilities had substantially changed as the participants now felt they understood how persons with disabilities really feel.
Cudney, S. A., Butler, M. R., Weinert, C., & Sullivan, T. (2002, April). Ten rural women living with fibromyalgia tell it like it is. Holistic Nursing Practices, 16(3), 35-45.
The purpose of this qualitative study was to gain an understanding of the personal experiences of 10 rural women dealing with fibromyalgia based on the theoretical frameworks of adaptation to chronic illness and social support. The data were gathered from a nursing intervention that provided computer-based peer support and encouragement. The women described themes of pain, fatigue, depression, and sleep disturbances; expressed views on the experience of rural isolation; and shared positive philosophies of dealing with this disease. With this understanding, professionals and significant others can compassionately respond to the needs of sufferers of fibromyalgia.
DaCosta, D., Dobkin, P. L., Pinard, L., Fortin, P. R., Danoff, D. S., Esdaile, J. M., & Clarke, A. E. (1999, April). The role of stress in functional disability among women with systemic lupus erythematosus: A prospective study. Arthritis Care and Research, 12(2), 112-119.
Study examining the link between stress and changes in functional disability as assessed by the Stanford Health Assessment Questionnaire (HAQ) in women with systemic lupus erythematosus (SLE). Data are from assessments of 42 women with SLE at baseline and 8 month follow-up. The researchers found that the major short-term determinants of functional disability for these women with SLE were not demographic or disease-related factors, but rather stress caused by negative life events. They conclude that comprehensive treatment of SLE requires management of life stress.
Dalmonte, J., Finlayson, M., & Helfrich, C. (2003). In their own words: Coping processes among women aging with multiple sclerosis. Occupational Therapy in Health Care, 17(3/4), 115-137.
Article describes the coping processes used by women aging with multiple sclerosis (MS). Data were gathered through in-depth interviews with women aged 55 and older. Analysis of the data revealed 2 major themes: attitudinal perspectives and action strategies. Attitudinal perspectives incorporated 3 types of coping strategies: (1) sense of self, which included confidence in abilities and integration of MS; (2) outlook on life; and (3) practicing faith and spirituality. Action strategies contained 3 types of coping strategies: (1) seeking and using social supports, (2) adapting environment, and (3) planning for the future. Excerpts from the interview transcripts are used to illustrate major themes and definitions.
Dangoor, N., & Florian, V. (1994, June). Women with chronic physical disabilities: Correlates of their long-term psychosocial adaptation. International Journal of Rehabilitation Research, 17(2), 159-168.
This study examined the effects of demographic factors, disability status, and individual internal resources to the long-term psychosocial adjustment of 88 married women with orthopedic, neurological, and internal chronic diseases. Results suggest that sense of coherence and socioeconomic status, rather than disability status variables, accounted most for variance in adaptational outcome.
Davies, N., & Duff, M. (2001, June). Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research, 45(3), 253-257.
Breast cancer is one of the commonest cancers to affect women. Present health service guidelines call for screening and mammography for all women aged between 50 and 65 years in an effort to increase early detection and improve survival rates. Nulliparity is one of the associated risk factors for breast cancer. Women with intellectual disability (ID) are increasing in longevity and are frequently nulliparous, and therefore, they are at increased risk of developing breast cancer. The aim of the present study was to review the uptake and knowledge of women with ID living in the community of breast screening programmes. A postal survey of women aged 50 years with ID living in community group homes was used to gather data. Only one-third of the women carried out regular breast examination and a similar proportion had received invitations to mammography. General practitioners and practice nurses were currently playing very minor roles in breast screening these women. Primary health care professionals may be missing opportunistic health promotion opportunities and the support services for women with ID living in the community could be provided with better training and resources to improve breast cancer screening in this vulnerable group.
Davis, M. C., Zautra, A. J., & Reich, J. W. (2001). Vulnerability to stress among women in chronic pain from fibromyalgia and osteoarthritis. Annals of Behavioral Medicine, 23(3), 215-226.
In two investigations, we studied vulnerability to the negative effects of stress among women in chronic pain from 2 types of musculoskeletal illnesses, fibromyalgia syndrome (FMS) and osteoarthritis (OA). In Study 1, there were 101 female participants 50 to 78 years old: 50 had FMS, 29 had OA knee pain and were scheduled for knee surgery, and 22 had OA but were not planning surgery. Cross-sectional analyses showed that the three groups were comparable on demographic variables, personality attributes, negative affect, active coping, and perceived social support. As expected, FMS and OA surgery women reported similar levels of bodily pain, and both groups scored higher than OA nonsurgery women. However, women with FMS reported poorer emotional and physical health, lower positive affect, a poorer quality social milieu, and more frequent use of avoidant coping with pain than did both groups of women with OA. Moreover, the perception and use of social support were closely tied to perceived social stress only among the FMS group. In Study 2, we experimentally manipulated negative mood and stress in 41 women 37 to 74 years old: 20 women had FMS, and 21 women had OA. Participants from each group were randomly assigned to either a negative mood induction or a neutral mood (control) condition, and then all participants discussed a stressful interpersonal event for 30 min. Stress-related increases in pain were exacerbated by negative mood induction among women with FMS but not women with OA, and pain during stress was associated with decreases in positive affect in women with FMS but not women with OA. These findings suggest that among women with chronic pain, those with FMS may be particularly vulnerable to the negative effects of social stress. They have fewer positive affective resources, use less effective pain-coping strategies, and have more constrained social networks than their counterparts with OA, particularly those who experience similar levels of pain. They also seem to experience more prolonged stress-related increases in pain under certain circumstances, all of which may contribute to a lowering of positive affect and increased stress reactivity over time.
Deane, R. (2005, February). Washing my life away: Surviving obsessive-compulsive disorder. London: Jessica Kingsley.
How many of us double-check that we really have locked the door or switched off the iron? For some people, such mundane everyday worries can become life-ruining obsessions. Obsessive-Compulsive Disorder (OCD) affects one in fifty people and one of them was Ruth Deane. In this frank and personal account she shares her own experience as an OCD sufferer, from the first innocuous signs of onset to the devastating effect of the condition on her relationships with her family and friends, her self-esteem and her marriage. Ruth Deane takes the reader on a moving, honest and at times light-hearted journey, from washing her hands until they cracked and bled, to hospital admission and eventual management and recovery from OCD. This book offers hope and support to sufferers and an insight into the disorder for family, friends, professionals and all those who want or need to understand OCD and the recovery process.
DeMarco, R., & Johnsen, C. (2003). Taking action in communities: Women living with HIV/AIDS lead the way. Journal of Community Health Nursing, 20(1), 51-62.
For the past 5 years, a successful collaboration of a medical center, a community-based HIV/AIDS service organization, a university school of nursing, and women living with HIV/AIDS in an inner city community resulted in a series of educational programs1 for women living with HIV/AIDS, their family, friends and caregivers. These programs were intended to provide inner-city women who were living with HIV/AIDS with knowledge and new insights from the voices of their peers. Topics focused on their self-care and empowerment so that they could take control of their wellness and their health care while remaining in their community. The efforts made in launching the collaborative educational series created trusting relationships between academic, clinical, and community service agencies, professional caregivers, and the recipients of their care. The most significant contribution belonged to the women living with HIV/AIDS themselves: After the programming they turned their health and life experiences into “action” by planning a research project that will test the efficacy of an intergenerational HIV prevention program for adolescent women of color in their community in the future.
DesMeules, M., Turner, L., & Cho, R. (2004). Morbidity experiences and disability among Canadian women. BMC Women’s Health 4(Suppl 1), S10.
Health Issue: Women are more frequently affected by chronic conditions and disability than men. Although some of these sex differences have been in part attributed to biological susceptibility, social determinants of health and other factors, these gaps have not been fully explained in the current literature. This chapter presents comparisons of hospitalization rates, and the prevalence of chronic conditions and physical disability between Canadian women and men and between various subgroups of women, adjusting for selected risk factors. The Canadian Hospital Morbidity Database (2000–2001) and Canadian Community Health Survey (2000–2001) were used to examine inpatient hospital morbidity, prevalence of chronic conditions and disability.
Key Findings: Hospitalization rates were 20% higher among women than men. This was due to the large number of hospitalizations for pregnancies and childbirth. When “normal” deliveries were excluded, hospitalization rates remained higher among women. Women had slightly lower rates of hospitalizations for ambulatory-care sensitive conditions than men. Prevalence of activity limitation (mild and severe) was higher among women than men, and differences remained after adjusting for age, chronic conditions, socio-economic status, and smoking. Women who reported a disability were less likely than men to be in a partnered relationship, have less tangible social support, and have lower income and employment rates.
Data Gaps and Recommendations: The impact of morbidity and disability on Canadian women is substantial. These results identify areas for interventions among more vulnerable subgroups, and point to the need for further research in the area of risk factors for the prevention of morbidity and disability in the population.
Dhar, J. P., Essenmacher, L. M., Ager, J. W., & Sokol, R. J. (2005, October). Pregnancy outcomes before and after a diagnosis of systemic lupus erythematosus. American Journal of Obstetrics and Gynecology, 193(4), 1444-1455.
Objective: The purpose of this study was to evaluate pregnancy outcomes before and after diagnosis of lupus.
Study Design: Successive selection criterion applied to 148 lupus and 78,905 non-lupus pregnancies, generated 3 groups: lupus group, 84 pregnancies (not-yet-diagnosed group, 15 women; already-diagnosed group, 69 women), and control group, 51,000 pregnancies. Three-way analysis of variance and the chi-squared test were used for analyses.
Results: Stillbirth outcome was increased in the lupus group compared with the control group (odds ratio, 4.84 [95% CI, 1.72,11.08]); the not-yet-diagnosed group (odds ratio, 9.89 [95% CI, 1.09,42.63]), and the already-diagnosed group (odds ratio, 3.85 [95% CI, 1.02,10.31]). Considering >1 pregnancy per patient would have overestimated the stillbirth rate. Stillbirth risk was increased significantly in severe maternal disease that was marked by central nervous system involvement. The already-diagnosed group had more hypertensive complications (P = .001 and .0001). Both lupus groups showed a significantly greater proportion of preterm births (P = .03), growth restriction (P = .019), and infants in the very low birth weight category (P = .021) compared with the control group.
Conclusion: Poor fetal outcomes are seen in pregnancies that are complicated by lupus, even before clinical appearance of disease, which supports a predisease state.
Dixon, A. N., & Gatchel, R. J. (1999, September). Gender and parental status as predictors of chronic low back pain disability: A prospective study. Journal of Occupational Rehabilitation, 9(3), 195-200.
This study investigated the relationship between chronic low back pain and various psychosocioeconomic factors, especially gender, that have been found significant in previous research. A cohort of 504 acute low back pain patients was initially evaluated and followed via a structured telephone interview at six months and one year after the evaluation in order to assess return-to-work and compensation status. Overall, the results demonstrated that the individuals who did not return to work were more likely to be female, single with children, and who have received compensation for their injury. These findings further document that single working mothers are at greater risk for developing chronic medical problems.
Dobkin, P. L., Da Costa, D., Joseph, L., Fortin, P. R., Edworthy, S., Barr, S., Ensworth, S., Esdaile, J. M., Beaulieu, A., Zummer, M., Senecal, J. L., Goulet, J. R., Choquette, D., Rich, E., Smith, D., Cividino, A., Gladman, D., St-Pierre, Y., & Clarke, A. E. (2002, Spring). Counterbalancing patient demands with evidence: Results from a pan-Canadian randomized clinical trial of brief supportive-expressive group psychotherapy for women with systemic lupus erythematosus. Annals of Behavioral Medicine, 24(2), 88-99.
Objective: To evaluate the effect of Brief Supportive-Expressive Group Psychotherapy as an adjunct to standard medical care in reducing psychological distress, medical symptoms, and health care costs and improving quality of life in women with systemic lupus erythematosus (SLE).
Methods: A randomized clinical trial was conducted with 133 SLE female patients from 9 clinics across Canada. Clinical and psychosocial measures were taken at baseline, posttreatment, and 6 and 12 months posttreatment. Outcomes assessed were psychological distress, quality of life, disease activity, health service utilization, and diminished productivity.
Results: Intention-to-treat analyses revealed that there were no clinically important group differences on any of the outcome measures.
Conclusion: Although both groups improved over time on several measures (e.g., decreases in psychological distress, stress, and emotion-oriented coping), these changes could not be attributed to the psychotherapeutic intervention. Thus, evidence does not support the referral of these patients to this type of intervention.
Documét, P. I., Green, H. H., Adams, J., Weil, L. A. Stockdale, J., & Hyseni, Y. (2008). Perspectives of African American, Amish, Appalachian and Latina women on breast and cervical cancer screening: Implications for cultural competence. Journal of Health Care for the Poor and Underserved, 19(1), 56-74.
Low-income and minority women are less likely to be screened for breast and cervical cancer and less likely than others to be diagnosed at an early stage in the cancer’s growth. We consulted women and providers to understand how social, economic, and health care environments affect screening among African American, Amish, Appalachian, and Latina women, and to outline possible solutions. Women participated in 31 focus groups. Providers completed a mail survey (n=168) and follow-up interviews (n=12). We identified barriers women face: not always following recommendations; feeling intimidated during appointments; having incorrect information about risks, screening guidelines, and programs; and receiving information in ways they cannot understand or accept. Women indicated a strong desire for accurate information and, like the providers, identified strategies for reducing barriers to screening. In the terms of a social ecological model, our results point to three avenues along which to approach cultural competence: 1) policy, 2) health care provision, and 3) clinical care.
Driedger, D. (2003). In sickness and employment: Women living and working with chronic illness. Resources for Feminist Research, 30(1/2), 125-136.
“This article reports on a study of women with chronic illnesses and their relationship to the workforce in Winnipeg, Manitoba. Workplace accommodation for disabilities is posited as a key concern, and new paradigms for work that would allow the women to participate without marginalization are explored” (p. 125).
Driedger, D. (2006, Summer). When the body protests: New versions of activism. Canadian Women’s Studies, 25(3/4), 188-190.
Driedger describes her long engagement within the disability rights movement, first while she was in good health, then subsequently being diagnosed with fibromyalgia, and then eventually with a diagnosis of breast cancer. Driedger recounts how as she experienced her own disabilities, she “knew that writing one’s story had power…” and thus she “saw [it as] a new kind of activism–it was writing your way into peoples’ consciousness, not marching in the streets” (p. 188).
Durr, M. (2005, December). Sex, drugs, and HIV: Sisters of laundromat. Gender & Society, 19(6), 721-728.
“I was listening to 98.7 KISS and preparing to walk to the laundromat around the corner from my apartment in Brooklyn, New York, when the hosts of the radio program made the following public service announcement: As of December 2003, according to the Office of Women’s Health at the U.S. Department of Health and Human Services, 67 percent of all women with AIDS are African American and 16 percent are Hispanic. The accelerating rate of AIDS among Black and Hispanic women stands in sharp contrast to the low rate found among Asian American women and the declining rate among white women and speaks volumes about continuing patterns of class and racial inequality.”
The author then reflects on how an encounter in a local neighborhood laundromat served to ground her further into the realities of HIV, substance abuse, and low income life among African American women.
Dworkin, S. L. (2005, November). Who is epidemiologically fathomable in the HIV/AIDS epidemic? Gender, sexuality, and intersectionality in public health. Culture Health & Sexuality, 7(6), 615-623.
This paper examines the shifting nature of contemporary epidemiological classifications in the HIV/AIDS epidemic. It first looks at assumptions that guide a discourse of vulnerability and circulate around risk categories. It then examines the underlying emphasis in public health on the popular frame of “vulnerable women” who acquire HIV through heterosexual transmission. Drawing on work on gender, sexuality, and intersectionality, the paper asks why a discourse of vulnerability is infused into discussions of heterosexually-active women’s HIV risks but not those pertaining to heterosexually-active men’s. The paper then moves to current surveillance categories that are hierarchically and differentially applied to women’s and men’s risks in the HIV epidemic. Here, the focus is on the way in which contemporary classifications allow for the emergence of the vulnerable heterosexually-active woman while simultaneously constituting lack of fathomability concerning bisexual and lesbian transmission risk. Lastly, theories of intersectionality, are used to examine current research on woman-to-woman transmission, and to suggest future more productive options.
Dyck, I. (1995, February). Hidden geographies: The changing lifeworlds of women with multiple sclerosis. Social Science & Medicine, 40(3), 307-320.
This paper discusses the microgeographies of unemployed women with multiple sclerosis, as they manage the physical, social and economic consequences of their illness. Recent directions in the geography of health and health care draw attention to the relationships between space, place and health experience, and in this paper a focus on the everyday lives of women with Multiple Sclerosis reveals the complex interweaving of space, physical impairment and gender in how they experience place. In-depth interviews were used in the study to investigate how women occupied and used home and neighbourhood space after leaving the paid labour force. The majority of women were found to experience shrinking social and geographical worlds which rendered their lives increasingly hidden from view as patterns of social interaction changed and use of public space diminished. The paper discusses the women’s residential and household changes, mediated by marital and socio-economic status, and presents two brief case studies to illustrate the remapping of the meanings of work and place as women renegotiate their lifeworlds. The focus of the study on the spatio-temporal settings of the women’s everyday lives revealed an interplay of biomedical discourse, policy structures, sociocultural norms and local sets of social relations that shaped the strategies the women used in reconstructing their lives. The women showed a diversity of responses, but these were all characterized by a restructuring of home and neighbourhood space, a recordering of personal relationships and increasing interpenetration of the public sphere in their private lives. The findings suggest that attention to the body in its geographical as well as social context provides an avenue for investigating the links between subjective experience and the broader social relations and processes which shape the illness experience.
Emlet, C. A., Tangenberg, K., & Siverson, C. (2002). A feminist approach to practice in working with midlife and older women with HIV/AIDS. Affilia, 17(2), 229-251.
Older women with HIV/AIDS constitute an invisible population that is often ignored by organizers of HIV prevention efforts as well as by HIV and aging organizations. This article explores the importance of a feminist approach to practice with a population affected by the intersection of ageism, sexism, and AIDS phobia. A support group for midlife and older women with HIV/AIDS is described, and four themes that were identified by the group participants are discussed. AIDS service organizations, the aging network, and policy makers must begin to recognize the critical need to support and assist older women with HIV/AIDS.
Fact sheet: Women and HIV/AIDS in the United States. (2004, December). Washington, DC: Kaiser Family Foundation. Retrieved March 12, 2005 from http://www.kff.org/hivaids/loader.cfm?url=/commonspot/security/getfile.cfm&PageID=49470.
The 2004 World AIDS Day focused on women, girls, and HIV/AIDS, and how gender inequity fuels the AIDS epidemic. As part of the effort to heighten awareness, this updated fact sheet on “Women and HIV/AIDS in the U.S.” uses the latest data on the epidemic to provide key trends, a profile of women at risk for and living with HIV, data on access to and use of the health care system, and HIV testing.
Feature issue on cancer and international health for women. (2006, January). Health Care for Women International, 27(1).
This special issue features articles reporting on international health for women with breast and cervical cancer.
Feresu, S. A., Zhang, W., Puumala, S. E., Ullrich, F., & Anderson, J. R. (2008, August). Breast and cervical cancer screening among low-income women in Nebraska: Findings from the Every Woman Matters Program, 1993–2004. Journal of Health Care for the Poor and Underserved, 19(3), 797-813.
Objective. To examine the likelihood of enrollees in the Nebraska Every Woman Matters program being screened for breast and cervical cancer.
Methods. We explored the relationship between sociodemographic characteristics and receiving cancer screening services.
Results. Older and Native American women were more likely than younger and White women to have mammograms ordered [adjusted odds ratio (OR) = 1.41, 95% confidence interval (CI) 1.08, 1.85]. African American [OR = 0.54, 95% CI 0.46, 0.64] and Native American women [OR = 0.47, 95% CI 0.39, 0.55] were less likely than White women to have clinical breast exams performed. Native American [OR = 0.19, 95% CI 0.16, 0.23] and African American women [OR = 0.56, 95% CI 0.46, 0.68] were less likely than White women to have a Pap test performed.
Conclusion. Receiving cancer screening services was related to race; thus, understanding barriers for screening for minority women is warranted.
Fernández, L. E., & Morales, A. (2007, June). Language and use of cancer screening services among border and non-border Hispanic Texas women. Ethnicity & Health, 12(3), 245-263.
Objectives. Compared to other groups, Mexican American women screen less frequently for cervical and breast cancer. The most significant barriers reported by previous researchers include not having a usual source of care, lacking health insurance and English-language difficulties. In this paper we document and examine the factors associated with disparities in cancer screening between border and non-border residents by language of interview (Spanish or English) among Texas Hispanic women. We hypothesize that, controlling for socioeconomic and demographic characteristics, border residents are more likely to utilize screening services than non-border residents because of the greater presence of bilingual services in border counties.
Design. We follow the framework of the Behavioral Model for Vulnerable Populations proposed by Gelberg et al. (Health Services Research, vol. 34, no. 6, pp. 1273-1302, 2000). This model conceptualizes use of health care as an outcome of the interplay of predisposing, enabling and need factors and recognizes that vulnerable groups face additional barriers to health care utilization. Data come from the 2000, 2002 and 2004 Texas Behavioral Risk Factor Surveillance surveys.
Results. Group differences in cancer screenings are explained largely by socioeconomic characteristics and structural barriers to access. The significance of language of interview and of border residence disappear after controlling for factors such as health insurance, income and a usual source of care.
Conclusion. Women who selected to be interviewed in Spanish were less likely to report age-appropriate cancer examinations, health insurance and a regular health care provider than those who selected to be interviewed in English. Disparities in cancer screenings among vulnerable Hispanic populations could be reduced by promoting the establishment of a regular health care provider.
Fischer, P. C. (2001). Putting theory into practice: A psychologist’s story. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 101-109.
A diagnosis of breast cancer is a frightening and life-changing experience. It affects not only the physical body, but also one’s psychological well-being and basic assumptions about the world. Paradoxically, having breast cancer can provide an opportunity for personal growth and finding new meaning in life. While coping with cancer is basically an individual task, coping skills, social support, and an empathic therapist can help the breast cancer patient manage this stressful time. This article explores my own experience with breast cancer and the resources and coping strategies that were most helpful in getting through this frightening time. I will discuss how my experience forced me to face my own mortality and led me to an inner strength and courage that I had not used before. By joining the ranks of those who have faced intense anxiety and fear during a serious life crisis, I have greater empathy for and understanding of my own patient’s struggles.
Fleury, J., Sedikides, C., & Lunsford, V. (2001, April). Women’s experience following a cardiac event: The role of the self in healing. Journal of Cardiovascular Nursing, 15(3), 71-82.
This study explored the role of the self in the experiences of women living with cardiovascular disease. The study, which used a naturalistic design, involved interviewing 13 women with a diagnosis of coronary heart disease (CHD) and analyzing their reports through constant comparative analysis. For women, living with CHD was characterized by changing images of the self. Women reported engaging in processes involving seeking meaning, creating mastery, and accepting the self. These processes were marked by the overarching theme of connectedness with significant others. The study findings enhance understanding of the role of the self in recovery for women with diagnosed CHD.
Fyrand, L., Moum, T., Finset, A., & Glennås, A. (2002, June). The impact of disability and disease duration on social support of women with rheumatoid arthritis. Journal of Behavioral Medicine, 25(3), 251-268.
The objective was to investigate the impact of physical disability and disease duration on the amount of social support received by female patients with rheumatoid arthritis. Two hundred sixty-four patients were assessed in a cross-sectional study. Disease duration had a negative relationship to daily emotional support; the length of disease duration was related to less emotional support. A combination of long disease duration and high disability was related to a low degree of problem-oriented emotional support. High physical disability was associated with less social companionship. Patients with high disability and few friends and patients with high disability and few neighbours reported less social companionship than patients with high disability and four or more friends or three or more neighbours. The combination high disability and few friends were associated with less problem-oriented instrumental support. Number of friends, age, and personality type all contributed to the variance in social support.
Gadalla, T. (2008). Disability associated with comorbid anxiety disorders in women with chronic physical illness in Ontario, Canada. Women & Health, 48(1), 1-20.
Anxiety disorders are more prevalent in individuals with chronic physical illness compared to individuals with no such illness, and about twice as prevalent in women as in men. This study used data collected in the 2005 Canadian Community Health Survey (21,198 women and 20,478 men) to examine factors associated with comorbid anxiety disorders and to assess the relation of these disorders on short-term disability and suicidal ideation. Comorbid anxiety disorders were more prevalent among women who were young, single, poor, and Canadian-born, and among women with chronic fatigue syndrome; fibromyalgia, bowel disorder or stomach or intestinal ulcers, or bronchitis had the highest rates of anxiety disorders. The presence of comorbid anxiety disorders was significantly associated with short-term disability, requiring help with instrumental daily activities, and suicidal ideation. Our findings underscore the importance of early detection and treatment of anxiety disorders in the physically ill, especially those who also suffer from mood disorders.
Gatchel, R., Mayer, T., Kidner, C., & McGeary, D. (2005, June). Are gender, marital status or parenthood risk factors for outcome of treatment for chronic disabling spinal disorders? Journal of Occupational Rehabilitation, 15(2), 191-201.
Recent clinical research has suggested that single working mothers may differ in their response to health treatment and outcomes, relative to their married female or male counterparts. The present study explored, on an a priori basis, the existence and extent of differences in chronic pain rehabilitation outcomes of pain report, return-to-work and future health utilization for single working mothers, relative to other patients. A cohort of 1,679 consecutive chronically disabled work related spinal disorder (CDWRSD) patients were placed into one of eight groups as a function of gender, marital status (single/married), and parenthood (with/without children). All patients completed an assessment battery measuring psychosocial variables at pre- and post-treatment, and a structured clinical interview evaluating socioeconomic outcomes at 1 year following completion of a 5–7 week functional restoration program. Results revealed that single females with children differed from all other groups in racial representation, with 57.1% of these individuals being African American, widely disparate from the prevailing local ethnicity. Single females and males with children were represented by a higher incidence of cervical injuries (25.0% and 26.7%, respectively) than all other groups (5.4–16.6%, p < .001). Contrary to expectation, the 8 groups did not differ significantly in program completion rate, work return, work retention, health utilization, recurrent injury or case settlement rates at one-year follow-up. The single females with children group did display greater levels of depression pre-treatment compared to the other groups. However, at post-treatment, these differences no longer existed. This investigation is one of the first to examine if the combination of gender and parenthood distinguishes significantly among CDWRSD patients. Overall, contrary to expectation, the single mothers did not show any significant differences in CDWRSD outcome at one-year post-rehab follow-up, and the single mothers and fathers showed no differences in depression or pain severity post-treatment. Thus, in spite of the societal belief to the contrary, it seems that single parent patients can show similar chronic pain rehabilitation outcomes, relative to other CDWRSD patients, after a prescribed course of tertiary functional restoration rehabilitation.
Gibbs, R. W., & Franks, H. (2002). Embodied metaphor in women’s narratives about their experiences with cancer. Health Communication, 14(2), 139-165.
Many scholars and medical professionals argue over the importance of metaphor in thinking about, and speaking of, cancer and other illnesses. Our study presents an analysis of the metaphors used by 6 women in their narratives of their experiences with cancer. We claim from our analyses that metaphorical talk about cancer reflects enduring metaphorical patterns of thought. Women used multiple, sometimes contradictory metaphors to conceptualize their complex cancer experiences. Many of their metaphors used to understand cancer are actually based on ordinary embodied experiences such that people still refer to the healthy body in trying to understand cancer even when their own bodies have been disrupted. We discuss the importance of our findings for understanding the relation between language and thought in regard to human illness.
Gibson, P. R. (1993). Environmental illness/multiple chemical sensitivities: Invisible disabilities. In M. Fine (Ed.), Women with disabilities: Found voices [Feature issue]. Women and Therapy, 14(3/4), 171-185.
Recent attention has focused on a hidden disability usually referred to as Multiple Chemical Sensitivities (MCS), Environmental Illness (EI), or Ecologic Illness, and involving detrimental effects upon multiple bodily systems in response to exposures to chemicals in levels that have been “generally regarded as safe” (GRAS). This study briefly describes MCS/EI as a disability, with emphasis on the impediments to a productive life for persons who experience this syndrome. Economic and psychological issues that are likely to be present as a result of being forced to face life with this hidden and unacknowledged problem are discussed. Political and disability issues are discussed, and examples are provided of women coping with the various aspects of this illness. Therapists who wish to be supportive to this population are offered suggestions for caregiving.
Goldblatt, B. (2009, September). Gender, rights and the disability grant in South Africa. Development South Africa, 26(3), 369-382.
South Africa’s disability grant is critical for the survival of many disabled people and their families, and is especially important to disabled women, who face further disadvantage because of their family responsibilities, their generally deeper poverty and their greater vulnerability to HIV/AIDS and other illnesses. Valuable engagement between feminism and disability theory offers a useful framework for understanding the needs of disabled women in South Africa’s social assistance system. This paper sets out the findings of a study of the disability grant system in two provinces in South Africa. It discusses the administrative problems with the system and the financial and other costs that burden the grant applicants and beneficiaries. It proposes that a comprehensive response to poverty, disability and gender inequality is needed, and makes specific recommendations for an improved system.
Gordon, L. G., Battistutta, D., Scuffham, P., Tweeddale, M., & Newman, B. (2005, October). The impact of rehabilitation support services on health-related quality of life for women with breast cancer. Breast Cancer Research and Treatment, 93(3), 217-226.
As the number of women surviving breast cancer increases, with implications for the health system, research into the physical and psychosocial sequelae of the cancer and its treatment is a priority. This research estimated self-reported health-related quality of life (HRQoL) associated with two rehabilitation interventions for breast cancer survivors, compared to a non-intervention group. Women were selected if they received an early home-based physiotherapy intervention (DAART, n = 36) or a group-based exercise and psychosocial intervention (STRETCH, n = 31). Questionnaires on HRQoL, using the Functional Assessment of Cancer Therapy – Breast Cancer plus Arm Morbidity module, were administered at pre-, post-intervention, 6- and 12-months post-diagnosis. Data on a non-intervention group (n = 208) were available 6- and 12-months post-diagnosis. Comparing pre/post-intervention measures, benefits were evident for functional well-being, including reductions in arm morbidity and upper-body disability for participants completing the DAART service at one-to-two months following diagnosis. In contrast, minimal changes were observed between pre/post-intervention measures for the STRETCH group at approximately 4-months post-diagnosis. Overall, mean HRQoL scores (adjusted for age, chemotherapy, hormone therapy, high blood pressure and occupation type) improved gradually across all groups from 6- to 12-months post-diagnosis, and no prominent differences were found. However, this obscured declining HRQoL scores for 20-40% of women at 12 months post-diagnosis, despite receiving supportive care services. Greater awareness and screening for adjustment problems among breast cancer survivors is required throughout the disease trajectory. Early physiotherapy after surgery has the potential for short-term functional, physical and overall HRQoL benefits.
Gordan, P.A., Feldman, D., & Crose, R. (1998, July/September). The meaning of disability: How women with chronic illness view their experiences. Journal of Rehabilitation, 64(3), 5-11.
It was the researchers’ belief that by listening to women with chronic illness discuss their disability experience one would be better able to understand the ways in which individuals construct the meaning of this significant life event. The interview format allowed for each participant to share her experience of illness, rather than focus on a specific set of questions or a theoretical construct. Therefore, while this study was exploratory and descriptive in nature, it does provide us an opportunity to gain an understanding about how illness is viewed and to be made aware of issues counselors need to recognize and address when working with persons with chronic illnesses.
Gosselink, C. A., & Myllykangas, S. A. (2007, January). The leisure experiences of older U.S. women living with HIV/AIDS. Health Care for Women International, 28(1), 3-20.
Although leisure is held to provide positive health benefits, structural and social obstacles deny equal participation to the disenfranchised. Employing quantitative and unique qualitative (e.g., Photovoice) methods, we examined the leisure behaviors of older women who were living in the United States and diagnosed with HIV/AIDS. Findings pointed to differences in time for, access to, and meaning of leisure in pre- vs. post-infection leisure for these women. As the disease progressed, however, each woman exhibited resilience in transcending systemic barriers to derive a spiritual view of leisure as a metaphor for the meaning of life. We believe our findings of spiritual transcendence will resonate among people living with HIV/AIDS throughout both Western and non-Western cultures.
Grant, L. D., Long, B. C., & Willms, J. D. (2002). Women’s adaptation to chronic back pain: Daily appraisals and coping strategies, personal characteristics and perceived spousal responses. Journal of Health Psychology, 7(5), 545-563.
Daily diary methodology was used to examine within- and between-person associations among pain appraisals, coping strategies, personal characteristics, perceived spousal responses and daily (30 days) changes in negative mood and pain for 88 women with chronic back pain. Multilevel models revealed that control appraisals and distraction and ignoring pain coping strategies were associated with same-day reductions in negative mood and pain; whereas catastrophizing appraisals and praying and hoping coping strategies were associated with an increase in negative mood or pain. With appraisals and coping controlled for, average within-day decreases in depression were associated with perceived control in one’s life; increases in anxiety were associated with spousal distracting responses; and increases in pain intensity were associated with spousal punishing responses and pain interference.
Grant, A. M., van Teijlingen, E. R., Forrest-Keenan, K., Torrance, N., Wilson, B. J., & Haites, N. E. (2006, December). Does breast cancer genetic counselling meet women’s expectations? A qualitative study. Critical Public Health, 16(4), 281-293.
A high demand exists in the United Kingdom for breast cancer genetic counselling. Due to the disease’s high incidence, many women who received such counselling are eventually assessed as not being at high genetic risk. This study elicits the experiences and perceptions of such women, as little research has been conducted. A qualitative interview-based study was conducted in the north-east of Scotland with a sample of women at low to moderate risk of developing breast cancer, who had received genetic counselling. The interviews addressed the women’s reasons for attending genetic counselling, their prior expectations and their perceptions of the outcomes of counselling. A thematic analysis was conducted to identify the key themes. The women themselves were mainly responsible for raising concerns regarding family history and, in general, sought information and reassurance about their own risk. Whilst they generally felt reassured after counselling, many did not understand the information they had been given and some continued to overestimate their own risk of disease. For many an important motivation for seeking counselling was to receive (more frequent) mammography screening, for which they perceived the genetic counsellors as gatekeepers. Some also expected a genetic test. The study findings were consistent with much of the published literature. Genetic counsellors must understand that genetic information, especially the risk as perceived, is not always well understood. This in turn may influence the further communication of risk information within the family. Also, people coming forward for genetic counselling may not be aware of some of the unintended consequences of such counselling, such as, for example, having to declare information to insurance companies and/or (potential) employers. If primary care practitioners are the main route through which people reach genetic counsellors, these professionals need to be kept up to date on issues related to genetics, and genetic testing and counselling.
Gurevich, M., Mathieson, C. M., Bower, J., & Dhayanandhan, B. (2007). Disciplining bodies, desires and subjectivities: Sexuality and HIV-positive women. Feminism & Psychology,17(1), 9-38.
Very little is known about the sexuality of women who are living with HIV, outside the context of risk prevention and education. Available research in the first-world context shows that, although most women continue to be sexually active following diagnosis, decreased sexual functioning is very common and more prevalent than among HIV-positive men. The present multi-site Canadian study is concerned with the ways in which women’s sexuality is transformed by the experience of living with HIV. Semi-structured interviews with 20 women were analysed using thematic decomposition, an analytic technique that combines discursive approaches with thematic analysis. The women in this study construct HIV as inhibiting in relation to sexuality. A predominant discourse of disciplining bodies, desires and subjectivities emerges, which centers on the restrictions imposed by an HIV-positive diagnosis. The following discursive constructions, in particular, emerge from the women’s accounts: diminished spontaneity, foreclosed (provisional) sexual freedom, foreclosed power, foreclosed flirtation, inciting violence, (un)natural sex, responsibility imperatives, muted/mutated sexuality, and diminished intimacy. The women’s predominant positioning within AIDS discourses as conduits of transmission, the relative neglect of women’s psychological and sexual health concerns in both research and public health agendas, and women’s relatively anomalous standing in AIDS communities imposes limits on bodies, lives, and subjectivities. These are reflected in these women’s accounts, wherein a focus on protecting others frequently impedes access to fulfilling (and safe) sexual and emotional relationships.
Handa, S. (1998, June). Gender and life-cycle differences in the impact of schooling on chronic disease in Jamaica. Economics of Education Review, 17(3), 325-336.
The incidence and correlates of adult health are becoming a policy issue in many middle-income countries due to the aging of population structures associated with medical technology and the demographic transition. Adult health problems such as physical disability and non-communicable chronic diseases require unique health infrastructure and expertise and can impose a large cost on already cash-strapped health services. This paper explores the socioeconomic determinants of chronic illness in Jamaica, a middle-income country where chronic diseases are the primary source of the nation’s disease burden. Econometric results from a national household survey indicate that additional education significantly reduces the reporting incidence of chronic illness, with the impact especially strong among adults aged 14–49. Moreover, this relationship persists after controlling for household resources, suggesting even greater health related social benefits to education than previously considered. Finally, as in other parts of the world and for other health measures, Jamaican women report earlier and higher incidences of chronic illness, but these differences cannot be explained by differences in the level or impact of education, nor are they likely to reflect mortality selection.
Harrison, T., & Stulfbergen, A. (2002, July). Disability, social support, and concern for children: Depression in mothers with multiple sclerosis. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31(4), 444-453.
Objective: To investigate the relationship between disability, concern for children, social support, and depressive symptoms in a group of mothers with multiple sclerosis (MS).
Design: An exploratory secondary analysis using correlation and multiple regression techniques.
Setting and Participants: Two hundred one women with MS responded to a survey as part of a cohort participating in a longitudinal study of health promotion and quality of life.
Outcome Measures: Depressive symptoms were measured using the CESD-10.
Results: The results indicate that disability and concern for children are independent predictors of depressive symptoms, and social support can partially mediate the effect of concern for children on depressive symptoms.
Conclusion: Appropriate support should be identified and provided by nurses caring for mothers with disabilities such as MS to decrease the depressive symptoms related to the concern they have for their children.
Haynes, T. (Writer & Director). (1995). Safe [Film]. Culver City, CA: Sony Pictures.
Carol White (Julianne Moore) is a mousy housewife living the affluent life in the San Fernando Valley when, over the span of a few months, she begins to develop debilitating sensitivities to her environment. A permanent at the hair salon makes her nose bleed and her skin go bad, exhaust from a truck causes her to cough violently, she’s allergic to the new couch, goes into seizures at the dry cleaner’s. No one understands or credits her condition, least of all her husband or family physician. But the symptoms worsen, and Carol eventually discovers others who suffer from similar environmental illnesses.
Henriksson, C. M., Liedberg, G. M., & Gerdle, B. (2005, June). Women with fibromyalgia: Work and rehabilitation. Disability and Rehabilitation, 27(12), 685-694.
Purpose. To explore disability in women with fibromyalgia with a focus on their work situation.
Method. Review of literature on work status of women with fibromyalgia.
Results. Major differences exist between studies in reported disability and in the percentages of women working. Limitations caused by pain, fatigue, decreased muscle strength, and endurance influence work capacity. However, 34–77% of the women work. Individual adjustments in the work situation are reported. When the women find a level that matches their ability, they continue to work and find satisfaction in their work role. Many factors besides degree of impairment or disability influence whether clients with longstanding pain can remain in their work role or return to work after sickness leave.
Conclusion. The total life situation, other commitments, type of work tasks, the ability to influence the work situation, and the physical and psychosocial work environment are important factors in determining whether a person can remain in a work role. More knowledge is needed about how to adjust work conditions for people with partial work ability to the benefit of society and the individual.
Herndl, D. P. (2006). Our breasts, our selves: Identity, community, and ethics in cancer autobiographies. Signs: Journal of Women in Culture and Society, 32(1), 221-245.
“This essay explores four volumes of collective autobiography in which women who have/had breast cancer simultaneously struggle with writing a new identity and creating an ethical narrative. Overwhelmingly, writers of breast cancer autobiography construct narratives that attempt to paint a positive picture of recovery and healing, but are such narratives unproblematically true? What are their political consequences? In what ways do the body, its inadequacies, and its fragmentation become part of a new narrative identity? I come to these questions as a feminist critic who has been writing about women, illness, and narrative for more than fifteen years but also as a six-year survivor of breast cancer. In this essay I want to embody the tension between the immediate purpose (or even need) of narrative and the larger structural and cultural politics of it. To whom and to what end do critical ethics answer?” (pp. 221-222)
Hoffman, D. (1993). Complaints of a dutiful daughter [Film]. New York: Women Make Movies.
With profound insight and a healthy dose of levity, Complaints of a Dutiful Daughter chronicles the various stages of a mother’s Alzheimer’s Disease and the evolution of a daughter’s response to the illness. The desire to cure the incurable–to set right her mother’s confusion and forgetfulness, to temper her mother’s obsessiveness–gives way to an acceptance which is finally liberating for both daughter and mother. Neither depressing nor medical, Complaints of a Dutiful Daughter is much more than a story about Alzheimer’s and family caregiving. It is ultimately a life-affirming exploration of family relations, aging and change, the meaning of memory, and love.
Hommel, K. A., Wagner, J. L., Chaney, J. M., & Mullins, L. L. (1998, July). Gender-specific effects of depression on functional disability in rheumatoid arthritis: A prospective study. International Journal of Rehabilitation and Health, 4(3), 183-191.
We examined the prospective impact of depression on objective ratings of disability as a function of gender in a sample of persons with rheumatoid arthritis. Forty-two individuals from an outpatient rheumatology clinic completed measures of depression, disability, and pain over the course of 1 year. A physician’s assistant completed objective measures of functional disability following a routine physical examination. Results demonstrated a significant main effect for gender on Time 2 objective ratings of disability (after controlling for disease variables and self-report indices of pain and disability), indicating that physician assistants rated female participants as more disabled than male participants. Importantly, the interaction of gender and Time 1 depression contributed significant variance to Time 2 disability. Findings suggest that women, relative to men, may experience greater declines in functional capacity over time, independent of self-perceptions of pain and disability, and that depression plays a significant role in this process. Discussion focuses on treatment considerations for health care teams, with particular focus on women’s adjustment of to RA.
Ingram, D., & Hutchinson, S. A. (2000). Double binds and the reproductive and mothering experiences of HIV-positive women. Qualitative Health Research, 10(1), 117-132.
In spite of the increasing number of young women infected with HIV in the United States, little is known about the reproductive and mothering experiences of these women. The purpose of the grounded-theory research discussed in this article was to describe the reproductive and mothering experiences of HIV-positive women. Twenty HIV-positive women participated in 31 in-depth interviews. The grounded-theory method was used for data analysis. A communication pattern known in the psychiatric literature as a double bind was discovered to be a basic social psychological problem that affected the women’s experiences with reproduction and mothering. An understanding of the power and influence of these double binds permits health care professionals to plan patient-centered programs and to individualize care specifically for HIV-positive women.
Jones, G. C., & Bell, K. (2004, January-March). Adverse health behaviors and chronic conditions in working-age women with disabilities. In J. Lancaster (Ed.), Crossing barriers to health: Disability issues within the family and community [Feature issue]. Family and Community Health, 27(1), 22-36.
An estimated 30 million women with disabilities reside in the US. Living a health enhancing lifestyle is important for every woman, but especially for women with disabilities who have been characterized as having a thinner margin of health. Jones and Bell conducted a retrospective, cross-sectional, multiple cohort study of women with disabilities that addresses two health-related areas in nationally representative sample of women living in the US.
Jung, K. E. (2002, Fall). Chronic illness and educational equity: The politics of visibility. In K. Q. Hall (Ed.), Feminist Disability Studies [Special issue]. NWSA Journal, 14(3), 178-200.
By using the university’s disability policy, chronically ill women become visible in ways that subsequently determine aspects of their undergraduate and graduate careers. This constitutes an exercise of power normally understood as the university acting in the interests of students with disabilities. Using an institutional ethnographic approach, this inquiry starts with the embodied experience of chronically ill women pursuing post-secondary education in order to shed light on the broader social processes that produce systemic inequities for people with disabilities. Specifically, I contend that the requirement that chronically ill students identify themselves as
disabled in the context of the university, subjects them to normative, prognostic, diagnostic, and other judgments and assessments that may disorganize their future student and career opportunities.
Kamm-Steigelman, L., Kimble, L. P., Dunbar, S., Sowell, R. L., & Bairan, A. (2006, February/March). Religion, relationships and mental health in midlife women following acute myocardial infarction. In C. L. Coleman (Ed.), Spiritual and religious activities: Implications for improving mental health [Special issue]. Issues in Mental Health Nursing, 27(2), 141-159.
Little is known about coping in women following an acute myocardial infarction (AMI). In midlife, women have worse outcomes than men following AMI. Innovative interventions need to be developed that respond to these women’s unique recovery needs. In this correlational, descriptive study, 59 women aged 35–64 who had experienced AMI reported low satisfaction with life and decreased mental health; 49% were experiencing depression. However, they also reported that religion, family, and friends provided strength and comfort at the time of their AMI. Greater activation of simple, family-oriented, coping resources during recovery may be key. It is recommended that mental health nurses be essential members of the recovery planning team.
Kendall-Tackett, K., Marshall, R., & Ness, K. (2003). Chronic pain syndromes and violence against women. Women & Therapy, 26(1/2), 45-56.
Chronic pain is a common form of disability, and is often reported among women with a history of victimization. In the present study, we combine six pain symptoms into a measure of self-reported pain, and compare women who have experienced child or domestic abuse with those who do not report such a history. A sample of 110 female patients (57 abused, 53 non-abused controls) was drawn from an adult primary-care practice of 905 patients in a small, affluent, predominantly Caucasian community in northern New England. The subjects ranged in age from 18 to 88 (M = 47). Subjects completed a self-administered questionnaire that was used clinically as part of the new-patient work-up. Women who reported either child or domestic abuse were significantly more likely to report pain symptoms than women in the control group. There was no significant difference between women who had experienced domestic abuse vs. child abuse alone. These findings held true even after controlling for depression.
Kendrick, K. (2008, May). ‘Normalizing’ female cancer patients: Look Good, Feel Better and other image programs. Disability & Society, 23(3), 259-269.
Image programs are a specific type of psychosocial cancer service developed to help women address the appearance-related side effects of cancer treatment. They include the Look Good, Feel Better program, medical and mastectomy boutiques and other cosmetic and makeover programs. In this paper I argue that the primary goal of image programs is to ‘normalize’ female cancer patients by hiding the physical evidence of illness and by reconstructing women with cancer as physically attractive, heterosexual and not disabled. The recovery of femininity and a feminine appearance is seen as central to recovering health. As a result, image programs take on a certain clinical legitimacy and become powerful reproducers of heterosexist and ableist discourses of gender and wellness.
Kenne Sarenmalm, E., Thorén-Jönsson, A., Gaston-Johansson, F., &
Öhlén, J. (2009). Making sense of living under the shadow of death: Adjusting to a recurrent breast cancer illness. Qualitative Health Research, 19(8), 1116-1130.
Women with recurrent breast cancer face many difficulties and challenges, from clinical symptoms of disease progression and treatment to a range of emotional responses. Guided by grounded theory methodology, we explored the main concerns of women with recurrent breast cancer, and how they were dealing with their situations. Data were collected from 40 in-depth interviews with 20 women diagnosed with recurrent breast cancer. The core category illustrated the process of “making sense of living under the shadow of death,” and was based on the women’s experiences of adjusting to living with a persistent life-threatening illness. Confronting a recurrence of breast cancer was a life-altering event. Moving through a difficult and challenging time, women eased their distress by letting go of losses and reassessing important values. Through a personal transition women transcended living with a life-threatening illness. These findings emphasize the importance of recognizing existential distress in clinical practice.
Kiger, H. (2003, October/December). Outreach to multiethnic, multicultural, and multilingual women for breast cancer and cervical cancer education and screening: A model using professional and volunteer staffing. Family & Community Health, 26(4), 307-318.
Reaching low-income women from diverse ethnic and cultural communities for the purpose of breast and cervical cancer education and screening is a challenge. This article describes an approach used by Center for Healthy Aging in Santa Monica, California, to implement three projects aimed at Hispanic and African American women to encourage early intervention behaviors. Hispanic and African American volunteers and professional staff work together to establish trusting relationships, join forces with community leaders and develop collaborative approaches to achieve the goal of screening about 1,000 underserved women annually and providing education for an additional 5,000 women. Incorporated in the article are lessons learned about working with this population, the communities in which they live and the use of volunteers for these and other projects.
Kilbourne, B. E., Baltrus, P. A., Williams-Brown, S., Caplan, L., Briggs, N. C., Roberts, K., Husaini, B. A., & Rust, G. E. (2008). Black-white disparities in elderly breast cancer mortality before and after implementation of Medicare benefits for screening mammography. Journal of Health Care for the Poor and Underserved, 19(1), 103-134.
Background. Medicare implemented reimbursement for screening mammography in 1991.
Main Findings. Post-implementation, breast cancer mortality declined faster (p=.0001) among White than among Black elderly women (65+ years). No excess breast cancer deaths occurred among Black elderly compared with White elderly through 1990; over 2,459 have occurred since. Contextual socioeconomic status does not explain differences between counties with lowest Black breast cancer mortality/post-implementation declines in disparity and counties with highest Black breast cancer mortality/widened disparity post-implementation.
Conclusions. The results lead to these hypotheses: (a) Medicare mammography reimbursement was causally associated with declines in elderly mortality and widened elderly Black:White disparity from breast cancer; (b) the latter reflects inherent Black-White differences in risk of breast cancer death; place-specific, unaddressed inequalities in capacity to use Medicare benefits; and/or other factors; (c) previous observations linking poverty with disparities in breast cancer mortality are partly confounded by factors explained by theories of human capability and diffusion of innovation.
Lane, L. G., & Viney, L. L. (2005, April). The effects of personal construct group therapy on breast cancer survivors. Journal of Consulting and Clinical Psychology, 73(2), 284-292.
In this study, the authors evaluated the effects of a brief personal construct group therapy on breast cancer survivors (N = 42) randomly assigned to either the treatment or wait-list control condition. The Gottschalk Gleser Content Analysis Scales were used to measure the effects for group across time (pre and post treatment, pretreatment, and 3-month post treatment) on the personal construct states of threat, threat to existence, dislocation, and hope. Analyses showed that the beneficial effects of therapy achieved post treatment were maintained at 3-month follow-up. The therapeutic group factors (I. D. Yalom, 1995) identified by the therapy group members as helpful in achieving these outcomes are also reported.
Langer-Gould, A., Huang, S. M., Gupta, R., Leimpeter, A. D., Greenwood, E., Albers, K. B., Van Den Eeden, S. K. & Nelson, L. M. (2009). Exclusive breastfeeding and the risk of postpartum relapses in women with multiple sclerosis. Archives of Neurology, 66(8), E1-E6.
Objective: To determine if exclusive breastfeeding protects against postpartum relapses of multiple sclerosis (MS) and, if so, whether this protection is related to
prolonged lactational amenorrhea.
Design: We conducted structured interviews to assess clinical, menstrual, and
breastfeeding history during each trimester and 2, 4, 6, 9, and 12 months postpartum and collected neurological examination findings from the treating physicians of women with MS. Hazards ratios (HRs) were adjusted for measures of disease severity and age.
Setting: Kaiser Permanente Northern California and Stanford University.
Participants: We prospectively enrolled 32 pregnant women with MS and 29 age-matched, pregnant controls.
Main Outcome: Measure Postpartum relapse.
Results: Of the 52% of women with MS who did not breastfeed or began regular supplemental feedings within 2 months postpartum, 87% had a postpartum relapse, compared with 36% of the women with MS who breastfed exclusively for at least 2 months postpartum (unadjusted HR, 5.0; 95% confidence interval, 1.7-14.2; P = .003; adjusted HR, 7.1; 95% confidence interval, 2.1-24.3; P = .002). Sixty percent reported that the primary reason for foregoing exclusive breastfeeding was to resume MS therapies. Women who breastfed exclusively had a later return of menses (P = .001) than women who did not, and lactational amenorrhea was associated with a reduced risk of postpartum relapses (P = .01).
Conclusions: Our findings suggest that exclusive breastfeeding and concomitant suppression of menses significantly reduce the risk of postpartum relapses in MS. Our findings call into question the benefit of foregoing breastfeeding to start MS therapies and should be confirmed in a larger study.
Leopold, E. (2006). “My soul is among lions”: Katharine Lee Bates’s account of the illness and death of Katharine Coman. Legacy, 23(1), 60-73.
“By the end of the twentieth century, breast cancer narratives constituted a genre of their own. What had begun in the United States in the 1970s with a few scattered memoirs had, by the late 1990s, become a veritable torrent. The popularity of these narratives marked the final—and irreversible—lifting of the veil from a disease that, with few exceptions, had been hidden away since time immemorial. The new genre also delineates significant changes in the course of the disease itself. Earlier diagnosis and treatment now gave women many more years of life. Suddenly transformed into breast cancer “survivors,” women were surprised to discover that they had lived to tell their tale and were eager—and extremely grateful—for the opportunity to do so. Fortified by second-wave feminism, they picked up their pens. Casting themselves as reluctant heroines, the writers trace their dangerous passage through a dark thicket of toxic treatments. Ultimately they prevail, regaining a place of relative safety in their former lives….”
“Bates’s narrative appears to be the earliest American account of breast cancer conceived explicitly as the history of an illness, written sixty years before the first published accounts began to appear. Bates wrote the memorial in a concentrated burst of a few days, shortly after Coman’s death, when the memory and pain of it were both still fresh. For the early twenty-first-century reader, this narrative highlights the radical changes that have taken place over the past century in the way women experience and understand breast cancer. Bates’s account also reveals the language, etiquette, and tropes of attachment between two educated women of the early twentieth century and the coterie of women who surrounded and supported them throughout their lives”(pp. 60-61).
Lerner, J. R., & Reid-Cunningham, M. (2001). Battling injury and chronic illness in a managed care world: A case history. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 59-74.
This article will chronicle Judy R. Lerner’s experiences with a serious injury and the exacerbation of a chronic illness, ensuing disability and the difficulty she had accessing disability and health care benefits through her employer’s managed care plan. It will demonstrate how therapy affected her ability to deal with adversity and to mold a new life for herself. In particular, it will reveal the importance of her relationship with her therapist, which was based on relational theory, and the influence that the therapist’s disclosure of her own chronic illness had on the course of the therapy.
Liedberg, G. M., Burckhardf, C. S., & Henriksson, C. M. (2006, October). Young women with fibromyalgia in the United States and Sweden: Perceived difficulties during the first year after diagnosis. Disability & Rehabilitation, 28(19), 1177-1184.
Purpose. The major symptoms of fibromyalgia (FM)–pain, tiredness, disrupted sleep, and muscle weakness–severely impact everyday activities, including the paid work role of women who have had FM for a long time. There are no prospective studies on young and newly diagnosed women with FM. The aim of the present study was to describe and compare difficulties young and newly diagnosed women in Sweden and the United States experienced during their first year after diagnosis.
Method. Three interviews, 6 months apart, were conducted, with 49 Swedish and 45 US women between the ages of 18 and 39. Five open-ended questions were asked concerning physical, psychological and social difficulties and limitations, and factors that increased or decreased their difficulties and limitations. At interviews 2 and 3 the women were also asked about ways of preventing their difficulties. The answers were written down and analysed by a content analysis approach.
Results. Consistent categories of difficulties were reported: symptoms, movements, activities, moods, social network, external factors and coping strategies. More US women were working outside their homes than were their Swedish counterparts and they expressed more difficulties compared with the Swedish women.
Conclusions. In general, difficulties decreased and coping strategies increased over the 1-year period in both groups of newly diagnosed, young women.
Loerzel, V. W., & Bushy, A. (2005, January/February/March). Interventions that address cancer health disparities in women. In J. Higginbotham (Ed.), Decreasing Health Disparities [Feature issue]. Family & Community Health, 28(1), 79-89.
Health disparities exist in cancer incidence and mortality rates among certain populations. Women of low socioeconomic status and minority women are at particular risk for not adhering to recommended cancer screening guidelines. Such behaviors may contribute to disparities when cancers are discovered at later stages, contributing to higher mortality rates in these women. Barriers to screening tests exist and are factors in preventing women from accessing available screening tests for breast and cervical cancer. Once barriers are identified, interventions can be developed to reduce certain health disparities. This article is a review of the literature that focuses on interventions that have been successful in addressing barriers that interfere with cancer screening in women.
Lofgren, M., Ekholm, J., & Ohman, A. (2006, April). ‘A constant struggle’: Successful strategies of women in work despite fibromyalgia. Disability and Rehabilitation, 28(7), 447-455.
Purpose. This study aimed to explore, and obtain increased knowledge of, the strategies used by working women with fibromyalgia regarding control of pain, fatigue and other symptoms.
Method. Qualitative methods with an emergent design were used. The informants were women with fibromyalgia who had participated in rehabilitation 6–8 years earlier, and were still in work. Diaries, focus groups and individual interviews were used for data collection. Content analysis and grounded theory were used for the analyses.
Results. A model with three categories emerged. The core category `constant struggle’ contains eight sub-categories: enjoying life, taking care of oneself, positive thinking, setting limits, using pain as a guide, creative solutions, learning/being knowledgeable and `walking a tightrope’. The category `grieving process’ was a prerequisite for managing the struggle and the category `social support’ contained what facilitated the struggle.
Conclusion. The informants fought a constant struggle against the symptoms and the consequences of their fibromyalgia. Their strategies were action-oriented and evinced a positive spirit. To have grieved and accepted their situation was a prerequisite for managing, and support from the family was a help in the struggle.
Lorber, J., & Moore, L. J. (2002). Gender and the social construction of illness (2nd ed.). Walnut Creek, CA: AltaMira Press.
The authors consider the interface between the social institutions of gender and Western medicine in this brief, lively textbook. They offer a distinct feminist viewpoint to analyze issues of power and politics concerning physical illness. In the extensively revised second edition of this successful text, the authors add chapters on disability and genital surgeries. They also update and expand their discussions of social epidemiology, AIDS, the health professions, PMS, menopause, and feminist health care. For a creative, feminist-oriented alternative to traditional texts on medical sociology, medical anthropology, and the history of medicine, this is an ideal choice.
Lundwall, R. A. (2002). Parents’ perceptions of the impact of their chronic illness or disability on their functioning as parents and on their relationships with their children. The Family Journal, 10(3), 300-307.
This article reports on an exploratory study. Seventeen parents, self-reporting a chronic illness or disability, responded on the Internet to a questionnaire developed from grounded theory techniques. Their perceptions were collected both on their ability to parent and on their relationships with their children. Follow-up interviews were conducted with 6 participants by telephone. Overarching themes that emerged were that with the chronic illness or disability, (a) there occurred more negative than positive changes; (b) reduced personal power occurred in several contexts, including in family role changes; (c) parents worry about family coping; and (d) there is more interest in family counseling than in support groups. Implications for Internet support groups, psychoeducation on the Internet, and future research are discussed.
Lynch, L. (2002). The epidemiology of “regrettable kinship”: Gender, epidemic, and community in Todd Haynes’ [Safe] and Richard Powers’ Gain. In A. D. Polsky (Ed.), Introduction: Biomedical Sciences and Popular Culture: Mutually Constitutive, Not Oppositional [Feature issue]. Journal of Medical Humanities, 23(3-4), 203-219.
In “The Epidemiology of ‘Regrettable Kinship’: Gender, Epidemic, and Community in Todd Haynes’ [Safe] and Richard Powers’ Gain,” the author analyzes two contemporary cultural texts about women and environmentally-linked illnesses to rethink commonplace understandings of the relationship between gender, disease, and community formation. By reading these narratives side by side, Lynch is able to address difficult issues about gendered subjectivity and the fragile construction of collective political identity. While the female protagonists in the texts Lynch examines relate differently to their illnesses, both portray the ways in which women negotiate the potential and limitations of “illness communities.”
Manderson, L., & Stirling, L. (2007). The absent breast: Speaking of the mastectomied body. Feminism & Psychology, 17(1), 75-92.
Worldwide, approximately 1 in 11 women have breast cancer at some time in their lifetime. The majority are successfully treated with surgery, then radiotherapy and/or chemo-therapy. Survival brings its own problems, however, including an underlying ontological problem: What is the part of the body left after a mastectomy? Women talking about their experiences of mastectomy are faced with complex referential tasks with regard to their bodies at different stages of the past and present, within different discourses (medical, sexual, maternal), and from different perspectives (the individual and the generic, their own perspective and that of their medical professionals). Drawing on anthropological research conducted among Australian women, we illustrate how women resolve difficulties of reference to the site of the mastectomy, and examine the shifts in perspective that are marked by different lexical choices.
Manson, D. (2006, Fall). “The trance of the ecstatica”: Margaret Fuller, animal magnetism, and the transcendent female body. Literature and Medicine, 25(2), 298–324.
In Woman in the Nineteenth Century (1845), the American feminist Margaret Fuller promoted the “magnetic” element of the woman as a source of liberation and empowerment. During the time that she was composing this work, animal magnetism, or mesmerism, was a popular form of medical treatment in America and Europe. Fuller suffered chronic pain from intense headaches and spinal curvature, and her letters and essays indicate that she found relief in magnetic treatments at a time when women were thought to be particularly susceptible to the mesmeric trance. Fuller’s experiences with mesmerism not only provided a remedy for her physical ailments but also contributed to her theory of feminism. This essay examines mesmerism as a form of holistic healing for Fuller, tracing her journey from a woman encumbered by intense pain to a woman who celebrated her magnetic female body and the spiritual liberation it afforded.
March, C. (Ed.). (1998). Knowing ME: Women speak about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. London: Womens Press, Ltd.
Collection of stories, poems and illustrations from women with CFS.
Markovic, M. (2006, November). Analyzing qualitative data: Health care experiences of women with gynecological cancer. Field Methods, 18(4), 413-429.
This article describes the process of writing up qualitative research and developing and testing a grounded theory. The article is based on data collected from in-depth interviews conducted in Australia with women with gynecological cancer. Thematic analysis of the data identified issues pertinent to women’s experiences. The article describes the discovery of themes in women’s stories and develops a grounded theory on women’s health care experiences on the basis of interview data.
Markovic, M., Manderson, L., Wray, N., & Quinn, M. (2004, December). ‘He’s telling us something.’ Anthropology & Medicine, 11(3), 327-341.
Drawing on in-depth interviews with patients and participant observation notes from a cancer support group and outpatients department, we analyse the experiences of Australian-born and immigrant women with gynaecological cancer to describe cancer diagnosis disclosures from the patients’ perspectives and examine women’s treatment decision-making. Data suggest that most women did not question the surgeon’s recommendation and assumed a passive role in treatment decision-making. The contextual factors which impacted on this pattern were the unavailability of an alternative biomedical treatment path, the perception of the metropolitan hospital as a centre of clinical excellence with extensive experience in treating women with gynaecological cancer, and lay understandings of the nature of gynaecological cancer as ‘a killer’. We also discuss the circumstances under which a few women took on the role of primary decision-maker.
MacDonald, J. (2004). One woman’s experience of living with chronic pain: The proclamation of voice. Journal of Social Work in Disability and Rehabilitation, 3(2), 17-35.
Emphasis within chronic pain literature is placed upon lost productivity of patients, escalating health care costs, and denunciation of compensation/disability claims, with exiguous recognition of the personal costs of chronic pain. Sufferers, particularly women, are vulnerable to being pathologized and labeled through the psychologizing of their pain and subsequently silenced in the pursuit of health care services. By means of an illness narrative, this article illustrates the invaluable contribution the chronic pain sufferer can make toward the understanding of her pain. Social work, as a health profession, is challenged to listen to women’s stories and to empower sufferers in the proclamation of their own voices, in an efficient movement toward participatory service delivery.
Martínez, M. E., Nielson, C. M., Nagle, R., Lopez, A. M., Kim, C., & Thompson, P. (2007). Breast cancer among Hispanic and non-Hispanic white women in Arizona. Journal of Health Care for the Poor and Underserved, 18(4), 130-145.
Background. Breast cancer in Hispanic women is poorly understood and data on tumor hormone receptor status in this population are limited.
Methods. Using data from the Arizona Cancer Registry, we assessed differences in tumor characteristics between Hispanic and non-Hispanic White (NHW) women using logistic regression modeling. 25,494 invasive breast cancer cases (23,657 NHWs and 1,837 Hispanics) reported to the cancer registry in 1995 to 2003 were included in the analysis.
Results. In age-adjusted models, compared with NHW women, Hispanics were more likely to have high-grade cancers, larger tumors, a greater number of positive lymph nodes, and advanced stage at diagnosis. Hispanic women were less likely to have tumors that are both estrogen and progesterone receptor positive (ER+1/PR+1), particularly those under age 60.
Conclusions. The profile of tumor presentation in Hispanic women in Arizona is consistent with a more aggressive disease pattern and less favorable prognosis than that of NHWs.
McGeary D. D., Mayer T. G., Gatchel, R. J., Anagnostis, C., & Proctor T. J. (2003, May). Gender-related differences in treatment outcomes for patients with musculoskeletal disorders. The Spine Journal, 3(3), 197-203.
Background context: Clinicians have long hypothesized that gender may be a risk factor in treatment outcomes of patients with chronic disability associated with musculoskeletal disorders. Although the scientific literature shows a higher prevalence of occupational low back injury in men, and a higher rate of repetitive motion and neck injuries in women, few studies have comprehensively investigated the role of gender regarding cost-related outcome variables of significance after work-related injuries.
Purpose: This study was designed to examine the relationship between gender and biopsychosocial treatment outcomes in a predominately chronically disabled spinal disorder (CDSD) workers’ compensation cohort undergoing a tertiary functional restoration program.
Study design: A prospective comparison cohort study investigating the effect of gender on biopsychosocial treatment outcomes as risk factors for rehabilitation failure.
Patient sample: A cohort of 1,827 consecutively treated patients with CDSD were placed into two gender-based groups: men (n=1,158, average age 40.7+/-10 years) and women (n=669, average age 42.5+/-10 years).Outcome measures: Before the start of the program, and again upon completion of the program, all patients received a standard psychosocial assessment and were assessed on a variety of physical factors (leading to a cumulative score, calculated on the basis of the aggregates and averages of these physical measures). A structured clinical interview examining socioeconomic outcomes was conducted at 1 year after program completion, and at least partial information was obtained from this interview on all patients in the present study.
Methods: All patients underwent a medically directed functional restoration program combining quantitatively guided exercise progression with a multimodal disability management approach using psychological and case management techniques.
Results: Men had a significantly higher rate of lumbar injury than women, whereas women had a significantly higher rate of cervical injury. Men returned to work and retained work at a 40 hours/week job at a higher rate at 1-year follow-up. Women evidenced a higher rate of health care-seeking behaviors from new providers. On physical testing immediately after treatment, men had a significantly higher cumulative physical score (gender normalized), both before and after treatment. On depression and disability questionnaires, men showed fewer pre- and posttreatment depressive symptoms with lower pretreatment disability scores.
Conclusions: The present study represents the first large-scale examination of the relationship between gender and treatment outcomes for a population with CDSD after work injuries. There was a pattern of moderately better 1-year posttreatment socioeconomic outcome for men. On psychosocial measures, men showed lower disability and depression scores than women, with higher levels of physical functioning both before and after treatment. Overall, male patients with CDSD appeared to show somewhat better biopsychosocial outcomes. This leaves the question of identifying gender-specific risk factors to explain these differences.
Mendelson, C., & Poole, J. L. (2007). Become your own advocate: Advice from women living with scleroderma. Disability & Rehabilitation, 29(19), 1492-1501.
Purpose. Systemic sclerosis (SSC) affects 300,000 people in the USA and has a significant effect on an individual’s functional ability. The purpose of this study was to outline the key components of living with the illness and to identify the information that those who are newly diagnosed would need to initiate a successful course of disease self-management. The results will provide the groundwork for development and testing of a self-paced education program for patients with SSC.
Method. Focus groups were conducted with 11 women diagnosed with SSC.
Results. Analysis of the transcripts yielded three themes, Secure Effective Medical Management, Live Your Life, and Learn Everything You Can. The thread Become Your Own Advocate wove these three themes together and illustrated that taking control of SSC is ultimately a function of self-advocacy.
Conclusion. For patients with SSC, taking control of their illness was a necessary component of maintaining the highest quality of life possible. A positive attitude, a strong support system, a commitment to moving forward with life, and access to high-quality, timely information all provided the participants with the tools to develop and implement a strategy of self-advocacy in disease management.
Milan, S., Ickovics, J., Vlahov, D., Boland, R., Schoenbaum, E., Schuman, P., & Moore, J. (2005, August). Interpersonal predictors of depression trajectories in women with HIV. Journal of Consulting and Clinical Psychology, 73(4), 678-688.
This article tests an interpersonal model of depression symptom trajectories tailored to the experiences of women with HIV. Specifically, the authors examined how bereavement, maternal role difficulty, HIV-related social isolation, and partner conflict predicted change in depressive symptoms over 5 years in 761 women with HIV, controlling for sociodemographic and clinical health factors. Of these interpersonal characteristics, partner conflict emerged as a robust predictor of change in depressive symptoms in growth curve and cross-lag models. Results highlight the need for interventions focusing on interpersonal issues, particularly intimate relationships, in women with HIV.
Miller, A., & Dishon, S. (2006, March). Health-related quality of life in multiple sclerosis: The impact of disability, gender and employment status. Quality of Life Research, 15(2), 259-271.
Objectives: (1) Evaluate the impact of the patient charateristics of disability, gender and employment status on health-related quality of life (HRQOL) in multiple sclerosis (MS) and (2) Characterize the functional relationship between HRQOL and disability overall, and by gender and employment status. Methods: We assessed the HRQOL of 215 MS outpatients in our clinic using the MSQOL-54 and Fatigue Severity Scale (FSS), and that of 172 healthy controls, using the SF-36 (a subset of MSQOL-54). We compared QOL between MS subgroups defined by disability, gender and employment, and computed the linear and non-linear relationships between disability level measured by the Expanded Disability Status Scale (EDSS) and MSQOL-54 dimensions.
Results: QOL of MS patients measured by SF-36 is lower than controls, varying by QOL dimension with the greatest difference emerging for physical aspects of the disease. The relationship of physical disability, measured by EDSS, and all 14 MSQOL-54 dimensions and FSS is negative; for 12 of the 14 dimensions and FSS it is also non-linear. Non-linearity is most pronounced among women, who show a weak EDSS/QOL relatioship at higher levels of physical disability, suggesting women better able to “psychologically buffer” the debilitating aspects of MS. While employed have higher QOL than unemployed, the former are more affected by physical disability.
Conclusions: Multiple attributes, including disability, gender and employment status, affect QOL. QOL’s relationship with disability is complex, displaying non-linearity and interacting with patient characteristics. This has implication for QOL research methodology and provides insight into factors affecting patients’ perceptions of well-being.
Moss, P. (1997, July). Negotiating spaces in home environments: Older women living with arthritis. Social Science and Medicine, 45(1), 23-33.
Within medical geography there has been a surge of interest in applying critical concepts in social theory to empirical settings, including those for persons with disabilities. The ways through which persons with disabilities negotiate space vary widely according to material and social experiences of being disabled. For older women, chronic illness as a type of disability shapes the way in which they approach their daily lives with respect to both the physical and social aspects of their home environments. In the first half of the paper, conceptually, I take a relational view of space and argue that household, as a narrow reading of domestic space, needs to be replaced by home environment which incorporates more fully age- and ablement-sensitive readings of the spaces constitutive of domestic space. This lays the basis for a contextualized socio-spatial understanding of the ways older women with chronic illness negotiate the spaces in home environments because it accounts for the disadvantaged positionings of access to power and resources as well as the uneven distributions of income based on gender, age, and (dis)ability. It also takes into account the material and social aspects of being disabled. In the second half of the paper, I present case studies of three older women diagnosed with rheumatoid arthritis to illustrate these arguments.
Moss, P., & Dyck, I. (1996). Inquiry into environment and body: Women, work and chronic illness. Environment and Planning D: Society and Space, 14(6), 737-753.
The recent call for the reorientation of analysis in medical geography to more critical approaches has been met with both enthusiasm and caution. Critical theories of health and health care services are emerging, which complement the well-developed focus on the spatial aspects of disease and service delivery. Yet in reconceptualising the links between place, space, and health, care must be taken in theorising in context experiences of health and illness. By context we mean the richly textured social formation wherein social relations are threads of a tapestry woven together. One topic which lends itself to such an inquiry is how material and discursive bodies combine to create identities for women with chronic illness around issues of gender and (dis)ability within the context of the wider social political economy. In this paper, we propose a feminist political economic analysis of environment and body as an addition to the critical frameworks emerging in medical geography. We first discuss what a radical body politics entails conceptually. Then we make suggestions with regard to undertaking such inquiry, using in illustration empirical work on women’s reshaping of their environment in response to chronic illness. This type of investigation extends previous work on the formation of women’s identities, experiences of chronic illness, and the materiality of everyday life. Last, we recast the concepts of environment, body, and identity formation while maintaining a commitment to the fluidity of conceptual and material boundaries.
Moss, P., & Dyck, I. (1999). Body, corporeal space, and legitimating chronic illness: Women diagnosed with M.E. Antipode, 31(4), 372-397.
The trendiness in using the body as a unit of analysis does not keep us from trying to understand how the body is part of the mundane stuff that makes up everyday life, particularly the chronically ill body. In our research with women diagnosed with chronic illness, we found that women experience their bodies, both sensorially and in their capacity for labor and leisure, through social scripts, seeming economic imperatives, and their own blood, sweat, and tears. The synchronous existence of the discursively ill and materially ill body seemed to be highlighted in these women’s accounts of their experiences of myalgic encephalomyelitis (M.E., popularly referred to as Chronic Fatigue Syndrome or CFS). This spurred us to rethink the body in terms not just of embodied social practices but also of embodied experiences. In this paper we draw on women’s experiences of M.E. as a way to assist in building a radical body politics. We first review and critique various attempts to come to terms with the simultaneity of the discursive and material body. We then present our empirical study comprised of in-depth interviews with women diagnosed with M.E. and living in Victoria and Vancouver, British Columbia, Canada. We then elaborate the notion of corporeal space as a way to access embodied experience. We close with comments about how body and space create a nexus through which we can access bodily existence within space.
Mudrick, N. R. (1988, June). Predictors of disability among midlife men and women: Differences by severity of impairment. Journal of Community Health, 13(2), 70-84.
This study examines the influences on disability among men and women controlling for the degree of functional incapacity imposed by chronic illness or impairment. The associations between demographic, attitude, social role characteristics and disability are separately examined for persons with mild and severe levels of limitation in order to determine whether different factors are associated with disability when impairment is mild as opposed to severe. Separate logit regressions are estimated for four sex/severity groups using data from the 1978 Survey of Disability and Work. It is hypothesized that among persons with severe impairments, only demographic variables will be significantly associated with disability because the severity of limitations would make other factors unimportant, while among persons who are mildly impaired attitudes and social roles will be important influences. Contrary to these expectations, the factors associated with disability are similar among the four sex/severity groups. In all four groups the presence of pain and fatigue strongly influence disability while gender roles are generally not associated with disability. Attitudes regarding the importance of work for self-esteem are also found to be associated with reports of disability. An unexpected outcome of this analysis is an indication of what predicts the absence of disability among severely impaired persons. In particular, persons who report that their sense of self-esteem is tied to work are least likely to report disability. These findings suggest which non-medical factors may contribute to the maintenance of usual work roles and life activities among persons with severe levels of impairment. They also identify variables which may link impairment and disability across all levels of severity.
Munir, F., Pryce, J., Haslam, C., Leka, S., & Griffiths. A. (2006). Gender differences in managing chronic illness at work: Exploring predictors for disclosure. Journal of Vocational Rehabilitation, 25(3), 173-180.
This study explored possible gender differences in the self-management of chronic illness as predictors for self-disclosure to line managers. A survey, sent to participants at a university, found 461 women and 273 men reporting a chronic illness. Findings suggest that women reported more symptoms of their illness and were more likely to perceive receiving emotional support from others as being important in managing their illness. In contrast, men were more likely to have higher sickness absence and report their symptoms as being more frequent. Despite the difference in the experience of illness between the two genders, findings suggests that the importance of receiving emotional support from line managers is the strongest predictor for disclosure of illness for both genders.
Mustian, K. M., Katula, J. A., & Zhao, H. (2006) A pilot study to assess the influence of Tai Chi Chuan on functional capacity among breast cancer survivors. The Journal of Supportive Oncology, 4(3), 139-145.
The purpose of this pilot study is to compare the influence of 12 weeks of Tai Chi Chuan (TCC) and Psychosocial Support Therapy (PST) on functional capacity among twenty-one women who had completed treatments of breast cancer within the past 30 months using a repeated-measures experimental design. Results suggest that TCC may be effective in improving functional capacity among women diagnosed with and treated for breast cancer though further research is needed to determine the optimal dose of TCC needed to elicit health related benefits among breast cancer survivors.
To read the full abstract, go to http://www.ncpad.org/research/fact_sheet.php?sheet=637.
Ndao-Brumblay, S. K., & Green, C. R. (2005, October). Racial differences in the physical and psychosocial health among black and white women with chronic pain. Journal of the National Medical Association, 97(10), 1369-1377.
Gender-based differences in pain epidemiology, pain threshold, attitudes toward pain management, coping styles and social roles are well described, yet little is known about the chronic pain experience in women or the role race plays. A retrospective analysis of self-reported data using a secondary clinical database was performed to elucidate the relationship between race and pain severity, depression, physical disability, posttraumatic stress disorder (PTSD) as well as affective distress in women with chronic pain. White (n=1,088) and black (n=104) adult women were compared based on their responses to the McGill Pain Questionnaire, Beck Depression Inventory, Pain Disability Index, Posttraumatic Chronic Pain Test and items from the West-Haven Yale Multidisciplinary Pain Inventory. After accounting for sociodemographic, medical, psychological and physical confounders, there was no significant race effect for pain severity or affective distress. However, black women with chronic pain experience more physical impairments than white women with chronic pain (beta = 4.622; p<0.005). Except for the family/home responsibilities, similar differences were found on all PDI subscales. We also found that disability mediates the race-depression relationship such that black women are comparatively more vulnerable to depression as a result of higher disability. Due to the economic, social and emotional impact that disability has on women with chronic pain and their families, these findings have significant implications for chronic pain research as well as its management in black women.
Neal-Barnett, A., & Mendelson, L. L. (2003, March). Obsessive Compulsive Disorder in the workplace: An invisible disability. In M. E. Banks, & E. Kaschak (Eds.), Women with visible and invisible disabilities: multiple intersections, multiple issues, multiple therapies, Part I [Special issue]. Women & Therapy, 26(1/2), 169-178.
In this paper we examine the role of obsessive-compulsive disorder (OCD) in the workplace lives of women. Classified as a disability under the Americans with Disabilities Act (ADA), the secrecy associated with the disorder makes it invisible to everyone except the women who suffer from it. Left untreated and without appropriate forms of support and accommodation, OCD often creates difficulties in the working lives of women. However, with appropriate treatment, education, and support, women with OCD are successful and bring unique and valuable assets to their jobs. Case studies and a recent court case are used to illustrate our recommendations.
Neill, J. (2005). Exploring underlying life patterns of women with multiple sclerosis or rheumatoid arthritis: Comparison with NANDA dimensions. Nursing Science Quarterly, 18(4), 344-352.
In Newman’s theory, disease is one of many manifestations of underlying pattern and its existence provides meaningful information about person-environment interactions. Underlying patterns manifest differently over time, so clues to their understanding can be found within life stories. Further interpretation subsequent to illustrating expanding consciousness for seven women living with multiple sclerosis or rheumatoid arthritis suggested six underlying patterns expressed in theoretical terms as energy-fatigue, giving-receiving, rejecting-accepting, vulnerability-resilience, control-release, and being silent-speaking out. Discussion and comparison with the North American Nursing Diagnosis Association’s dimensions for assessment of human response patterns illustrates how nurses caring for women could identify and use underlying patterns in practice.
Neill, J. (2005). Health as expanding consciousness: Seven women living with multiple sclerosis or rheumatoid arthritis. Nursing Science Quarterly, 18(4), 334-343.
The meaning of health as expanding consciousness is explored through stories of seven women who developed multiple sclerosis or rheumatoid arthritis during their lives. Using Newman’s hermeneutic-dialectic approach, unstructured interviews were conducted over a 2-year period. Analysis and interpretation of narratives concerning person-environment interactions revealed turning points and separate choice points before four new ways of living including finding simple pleasures, being positive, gaining self-control, and self-differentiation, were found. Support for Newman’s stages of expanding consciousness and more comprehensive descriptions of self-transcendence in space and time are presented. Implications for theory development and theory-guided practice are offered.
Newman, P. A., Williams, C. C., Massaquoi, N., Brown, M., & Logie, C. (2008, August). HIV prevention for Black women: Structural barriers and opportunities. Journal of Health Care for the Poor and Underserved, 19(3), 829-841.
Black women bear a disproportionate burden of HIV/AIDS in North America. The purpose of this investigation was to explore Black Canadian women’s perspectives on HIV risk and prevention. Four 90-minute focus groups (n = 26) and six key informant interviews were conducted in Toronto with Black women of African and Caribbean descent and low socioeconomic status. Data analysis revealed a number of potent barriers to existing HIV preventive interventions: stigma, cultural disconnections, lack of engagement of Black religious institutions, and multiple intersecting forms of discrimination. Recommended HIV prevention opportunities included the Black church, mainstreaming, health care providers, and ethno-specific agencies. HIV prevention strategies for North American Black women, rather than focusing on HIV and individual risk behaviors, may benefit from a primary focus on social and structural factors (e.g., promoting gender equality, economic opportunity, women-controlled prevention technologies and combating racism in health care) thereby integrating HIV prevention into the larger context of community health and survival.
Oliver, K., & Cronan, T. A. (2005). Correlates of physical activity among women with fibromyalgia syndrome. Annals of Behavioral Medicine, 29(1), 44-53.
Background: Fibromyalgia (FMS) is a chronic pain syndrome of unknown origin that lacks standardized treatment. However, participation in physical activity (PA) benefits people with FMS. Despite the psychosocial and health benefits that can be gained through PA, the correlates of PA among people with FMS remain poorly understood.
Purpose: The purpose of this study was to identify and compare the effects of cross-sectional and longitudinal correlates of PA among women with FMS.
Methods: Participants were 187 female members of a HMO with a confirmed diagnosis of FMS. They were administered a battery of questionnaires assessing potential correlates of PA. These correlates were suggested by social cognitive theory and the transtheoretical model, and have been repeatedly associated with PA among the general population.
Results: Multivariate analyses indicated that self-efficacy for PA and the behavioral processes of change were the strongest discriminators among PA adopters, maintainers, quitters, and those who were sedentary. Enjoyment of PA, barriers to PA, the impact of FMS, and the environment also significantly discriminated among these groups. Longitudinally, changes in self-efficacy were significantly associated with changes in PA.
Conclusions: These findings suggest that self-efficacy may play a critical role in both the present and long-term PA of women with FMS. They also lend additional support to the role of social cognitive and transtheoretical variables in discriminating among levels of PA.
Orgad, S. (2006). The cultural dimensions of online communication: A study of breast cancer patients’ internet spaces. New Media & Society, 8(6), 877-899.
Many have studied the interrelations between online spaces and offline contexts, highlighting that internet spaces are fundamentally embedded within specific social, cultural and material contexts. Drawing upon a study of breast cancer patients computer-mediated communication (CMC), this article aims to contribute to our understanding of the role of cultural elements in shaping the participation in and design of, CMC environments. It uses an analysis of patients interviews and breast cancer websites as an exploratory site for identifying cultural dimensions that should be considered in studying online spaces. It shows how both the breast cancer sites and their participants emphasize a sense of global similarity and commonality, while at the same time this CMC context is shaped by specific linguistic, national, temporal, spatial, religious, ideological and discursive North-American dimensions. It concludes with a broader discussion of the importance of examining the cultural aspects of online contexts and by extension, how cultural elements shape the methodologies that researchers employ.
Palmadottir, G. (2009, October). The road to recovery: Experiences and occupational lives of Icelandic women with breast cancer. Occupational Therapy in Health Care, 23(4), 319-335.
The purpose of this qualitative study was to explore the experiences and occupational lives of Icelandic women with breast cancer. In all 18 women were interviewed using the Occupational Performance History Interview as a guide. The women employed different modes of interpreting and responding to the cancer event with occupational participation being the central vehicle to resist the illness. Adjustment to breast cancer survivorship was characterized by permanent changes in the women’s lives with both positive and negative consequences. When working with women with breast cancer, occupational therapists should focus on their needs as occupational beings.
Panton, L. B., Kingsley, J. D., Toole, T., Cress, M. E., Abboud, G., Sirithienthad, P., Mathis, R., & McMillan, V. (2006, November). A comparison of physical functional performance and strength in women with fibromyalgia, age- and weight-matched controls, and older women who are healthy. Physical Therapy, 86(11), 1479-1488.
Background and Purpose: The purpose of this study was to compare functionality and strength among women with fibromyalgia (FM), women without FM, and older women.
Subjects: Twenty-nine women with FM (age [X±SD]=46±7 years), 12 age- and weight-matched women without FM (age=44±8 years), and 38 older women who were healthy (age=71±7 years) participated.
Methods: The Continuous Scale-Physical Functional Performance Test (CS-PFP) was used to assess functionality. Isokinetic leg strength was measured at 60°/s, and handgrip strength was measured using a handgrip dynamometer.
Results: The women without FM had significantly higher functionality scores compared with women with FM and older women. There were no differences in functionality between women with FM and older women. Strength measures for the leg were higher in women without FM compared with women with FM and older women, and both women with and without FM had higher grip strengths compared with older women.
Discussion and Conclusion: This study demonstrated that women with FM and older women who are healthy have similar lower-body strength and functionality, potentially enhancing the risk for premature age-associated disability.
Peek, M. K., & Coward, R. T. (1999, May). Gender differences in the risk of developing disability among older adults with arthritis. Journal of Aging and Health, 11(2), 131-150
Although older women are disabled from arthritis at higher rates than men, there is an inadequate understanding of the factors that place women at higher risks. The purpose of this research is to improve understanding of gender differences in the process of becoming disabled among older adults with arthritis. Methods: Gender differences in risk factors associated with developing a disability during a 30-month period are examined among a sample of noninstitutionalized elders with arthritis (N = 749). Results: Results from discrete time-hazard models indicate that sociodemographic factors account for gender differences in disability with activities of daily living (ADLs). However, for difficulties performing instrumental activities of daily living (IADLs), gender differences remain unexplained by variations in demographic and health factors. Discussion: More descriptive and explanatory work needs to focus on gender differences in IADL disability; however, these finding suggest that the gendered nature of the IADL tasks influences gender differences in IADL disability.
Peek, M. E., Sayad, J. V., & Markwardt, R. (2008, November). Fear, fatalism and breast cancer screening in low-income African-American women: The role of clinicians and the health care system. Journal of General Internal Medicine, 23(11), 1847-1853.
Background: African-American women have the highest breast cancer death rates of all racial/ethnic groups in the US. Reasons for these disparities are multi-factorial, but include lower mammogram utilization among this population. Cultural attitudes and beliefs, such as fear and fatalism, have not been fully explored as potential barriers to mammography among African-American women.
Objective: To explore the reasons for fear associated with breast cancer screening among low-income African-American women.
Methods: We conducted four focus groups (n = 29) among a sample of African-American women at an urban academic medical center. We used trained race-concordant interviewers with experience discussing preventive health behaviors. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted using an iterative process, and each transcription was independently coded by members of the research team.
Main Results: Several major themes arose in our exploration of fear and other psychosocial barriers to mammogram utilization, including negative health care experiences, fear of the health care system, denial and repression, psychosocial issues, delays in seeking health care, poor health outcomes and fatalism. We constructed a conceptual model for understanding these themes.
Conclusions: Fear of breast cancer screening among low-income African-American women is multi-faceted, and reflects shared experiences within the health care system as well as the psychosocial context in which women live. This study identifies a prominent role for clinicians, particularly primary care physicians, and the health care system to address these barriers to mammogram utilization within this population.
Person, B., Bartholomew, K. L., Addiss, D., & van den Borne, B. (2007, November). Disrupted social connectedness among Dominican women with chronic filarial lymphedema. Patient Education and Counseling, 68(3), 279-286.
Objective: The objectives of this paper were to identify specific factors associated with intact or disrupted social connectedness among Dominican women with chronic filarial lymphedema and better understand the impact of disrupted connectedness on their lives.
Methods: Data were collected through 28 individual interviews and 3 focus group discussions of 28 women from filariasis-endemic areas of the Dominican Republic presenting with lymphedema of one or both legs.
Results: The confluence of chronic and acute stressors with severity of lymphedema lead women to rely on others for social support. Women described complications of aging, disability, reduced social networks, and inability to adhere to cultural scripts as contributing to disrupted social connectedness.
Conclusion: Social disconnectedness appears to exacerbate the negative consequences of living with lymphedema among women. Social connectedness and cultural scripts often define a social role for women that transcend physical deformity and disability, while disrupted social connectedness contributes to social isolation, depressive symptoms, and poor health outcomes.
Practice implications: Further behavioral research into the contribution of intact social connectedness to resiliency and coping is warranted in order to develop effective interventions for women. Identifying women with disrupted social connectedness and engaging them in behavioral interventions to enhance natural social networks and create new or enhanced social support opportunities may mitigate the negative effects of social disconnectedness and improve quality of life.
Petersen, S., & Benishek, L. A. (2001). Social construction of illness: Addressing the impact of cancer on women in therapy. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 75-100.
There is no question that a diagnosis of cancer has a significant impact on anyone, however, certain aspects of American culture and particularly the medical culture exacerbate the impact. This article supports the notion that a woman’s experience of cancer is, at least in part, socially constructed, political in nature, and therefore, uniquely disempowering to women. Those cultural forces affecting women with cancer include the stigma, the socially-embedded self-definitions, and the practices that dominate the medical-industrial complex. This article demonstrates how the use of social constructivist therapy can assist women in disengaging from these cultural forces while engaging in new ways of thinking and behaving that, in empirical studies, have resulted in decreased progression of disease, longer survival rates, and more effective coping with cancer.
Phenix, L. M. (1994). Cancer in two voices [Film]. New York: Women Make Movies.
“I’m the first among our friends to have cancer… Many will see their future in the way I handle mine,” Barbara Rosenblum wrote after learning she had advanced breast cancer. For three years Barbara had yet to live, she and her partner, Sandra Butler, documented their lives with courage and frankness. This stunning film provides a unique view into the intimacy of a relationship in a time of crisis. The two women talk about their identity as Jewish women and as lesbians, and they speak openly about the difficult issues each is facing: anger, guilt, feelings about their bodies and changing sexuality, about death and loss. Never once losing either its balance or its fierce emotional integrity, Cancer in Two Voices provides a practical example of dealing with death with sensitivity and a deep commitment to living.
Phillips, L. J., & Stuifbergen, A. K. (2009). Structural equation modeling of disability in women with fibromyalgia or multiple sclerosis. Western Journal of Nursing Research, 31(1), 89-109.
Structural equation modeling (SEM), a popular statistical technique for analysis of multivariate data in the social sciences, is increasingly being used in the behavioral and clinical sciences. SEM is appropriate for posing complex models that evaluate the direct and indirect influence of several variables on one or more outcome variables. A biosocial model of disability, the Disablement Process Model, lends itself to evaluation by SEM. Using SEM, this study examined predictors of disability (Age, Education, Duration of Illness, and Economic Adequacy Functional Limitations, Depressive Symptoms, and Social Support) separately in women with multiple sclerosis (MS) and women with fibromyalgia syndrome (FMS) and compared the respective models across groups. Data were analyzed with Analysis of Moment Structures (Amos) 7.0. Problems identified in initial confirmatory model testing included collateral correlated errors, a negative error variance, and poor performance of the disability indicators. After specifying well-fitting confirmatory models for each group, a structural model for the larger FMS group was estimated. Model refinement resulted in the reversal of the path between Depressive Symptoms and Social Support. Further model revisions were based on comparative fit statistics and theoretical logic. The structural model developed from the FMS sample required minimal changes to fit the MS sample. The multisample model explained greater variance in disability in women with FMS than in women with MS. Social support and depressive symptoms mediated the effect of functional limitations on disability. Interventions that target modifiable characteristics, such as depression and social support, may improve outcomes such as disability.
Plach, S. K., Stevens, P. E., & Keigher, S. (2005). Self-care of women growing older with HIV and/or AIDS. Western Journal of Nursing Research, 27(5), 534-553.
The purpose of this report is to describe the ways older women living with HIV perceive of and practice self-care. Data are taken from a culturally diverse subsample of 9 women age 50 years or older who participated in a larger longitudinal qualitative study of women who were HIV infected. During a period of 2 years, 10 semistructured narrative interviews were conducted with each of the 9 participants to gain an in-depth understanding of their experiences with symptom management, adherence to medical regimens, reduction of HIV risk, access to health care and social services, and personal efforts to maintain their health. Transcribed data were managed using Nvivo software and analyzed using multistaged narrative analysis. Findings suggest that mature women living with HIV integrate actions to maintain bodily comfort and improve physical well-being with actions that champion and conserve the existential self. Excerpts from their interviews illustrate this dialectical understanding of self-care.
Plach, S. K., Stevens, S. K., & Moss, V. A. (2004). Corporeality: Women’s experiences of a body with rheumatoid arthritis. Clinical Nursing Research, 13(2), 137-155.
The purpose of this research report is to describe women’s experiences living with rheumatoid arthritis (RA). Twenty women diagnosed with RA participated in semistructured interviews that were analyzed using qualitative content analysis. Findings indicated that how women with RA experience life in their physical bodies is fundamentally important. Corporeality, the name we chose for this phenomenon, is quite literally being one’s body. This experience of the reality of being in or being of a body or corpus was central, not only to participants’ perceptions of well-being but also to the impact rheumatoid arthritis was having on their lives and the actions they took to contend with the illness. The authors identified three themes that described what corporeality was for women with RA: relating to a noncompliant body, body out of synch, and private body made public. These results are discussed in light of other research about embodied experience in persons living with chronic illness.
Plach, S. K., Stevens, P. E., & Moss, V. A. (2004). Social role experiences of women living with rheumatoid arthritis. Journal of Family Nursing, 10(1), 33-49.
This study was designed as the qualitative arm of a larger quantitative study (N= 156) of the relationships among social role quality, physical health, and psychological well-being of women living with rheumatoid arthritis (RA). A subset of 20 midlife and late-life women from this larger sample participated in semistructured interviews with the specific aims of investigating how fulfilling they found social roles to be, including their spouse, mother, worker, and homemaker roles, while contending with RA, and what circumstances made social role experiences more positive. The results of the current followup qualitative study illustrate how difficult it can be to fulfill social roles during exacerbations of the illness in their formative adult years. The circumstance that best facilitated their positive experience in social roles was the unburdening of social role obligations as they grew older. Implications for nursing practice are discussed.
Potts, L., Dixey, R., & Nettleton, S. (2007, December). Bridging differential understanding of environmental risk of breast cancer: Why so hard? Critical Public Health, 17(4), 337-350.
The incidence of breast cancer in the UK continues to increase: the lifetime risk for women is now one in nine. The reasons for this are hotly disputed by scientists (toxicologists, molecular biologists, geneticists, epidemiologists), breast cancer activists, and environmentalists, with a range of theories about breast cancer causation. There is a significant degree of disagreement between these various stakeholders, and a lack of effective dialogue among them. This paper reports on the findings of an innovative project investigating these issues. The study both explored the different standpoints taken up by the various players, and actively intervened to create opportunities for dialogue among them. Thus interviews were arranged with a range of policy makers, scientists, clinicians and health workers, breast cancer activists, environmentalists and others, in order for them to outline their understanding and theories of breast cancer causation. In addition, a series of ‘hearings’ were held where the different stakeholders had an opportunity to listen to each other and air their views, and allowed us to assess whether there could be any possibility of bridging the divide between their viewpoints. Our findings and analysis throw light on the factors that inhibit, and indeed might facilitate, effective communication of divergent ideas. We identify three epistemological positions which we call ‘traditionalist’, ‘dissident traditionalist’ and ‘dissident/challenge’, and conclude by suggesting that an appreciation of the stakeholders’ worldviews in this way, and the underlying ideological premises, provides an important indication as to why debates on breast cancer causation are so vociferous.
Radley, A., & Bell, S. (2006, August). Artworks, collective experience, and claims for social justice: The case of women living with breast cancer. Paper presented at the annual meeting of the All Academic Inc., Montreal Convention Center, Montreal, Quebec, Canada, Available: http://www.allacademic.com/meta/
p103132_index.html.
This paper discusses the role of ‘artworks’ produced by women with breast cancer in the context of breast cancer activism. We argue that such works play a key role in making visible and collective the ideological issues surrounding this disease. They do this through their potential for anchoring social practices relating to its treatment and what might be done about it (Klawiter 2004, Swidler 2001). The paper focuses upon the work of two women artists diagnosed with breast cancer–the British photographer Jo Spence, and Martha Hall, an American who made artist’s books. We examine specific works from these collections, and the context of their production. In this way we show how and why artworks are important in establishing visual and discursive space related to social practices associated with disease regimes, and how they provide emancipatory potential for women living with breast cancer. This analysis enables criticism of both the functionalist position that sees artworks as outside the social context of illness (rather than constitutive of it), and the constructivist position that regards artworks as needing interpretation in order to bring them into being. Instead, we argue that artworks are already ideological, working through and on bodies to enable a redemptive and emancipatory potential. As mediators of representations of illness, they deserve attention from sociologists researching social movements, the sharing of illness experience and strategies for survival.
Reisine, S. T., & Fifield, J. (1988, December). Defining disability for women and the problem of unpaid work. Psychology of Women Quarterly, 12(4), 401-415.
Discusses political, theoretical, and methodological issues in defining and measuring paid and unpaid work disability. Presents results of study analyzing disability in paid work and unpaid family work among 206 women with rheumatoid arthritis, demonstrating feasibility of measuring disability in family work and showing that women experience significant limitations in homemaker functioning and in paid work roles.
Reynolds, F. (2003). Conversations about creativity and chronic illness I: Textile artists coping with long-term health problems reflect on the origins of their interest in art. Creativity Research Journal, 15(4), 393-407.
This qualitative study explored the origins of interest in textile arts among a group of women living with long-term health problems. The part that illness played in motivating engagement in creative arts was of particular concern. Twenty-four women, between 29-72 years old, were interviewed. Most were hobbyists, but the sample included some publicly acclaimed textile artists. A minority had engaged in art continuously since their earlier years. Most of the women had discovered (or rediscovered) textile arts in middle and later life. Several factors facilitated this. The narratives indicated that the women’s preexisting resilient personality, as well as extensive support structures, may have encouraged a reflective attitude and a problem-solving approach to living with illness. The experience of biographical disruption, stemming from the crisis of illness, dissatisfaction with unproductive time, and a growing need for self-fulfillment, appeared to create a search for a meaningful occupation. The discovery of textile art as a meaningful occupation (as opposed to other ways of living with illness) appeared to be encouraged by early role models, enjoyment of art at school, the discovery that adult personal and professional interests could be expressed through artwork, and chance events. Textile art at school appeared to provide a form of “cultural capital” for these women, who returned to this art medium and the skills learned earlier when crisis occurred. The findings indicate that a negative event such as illness may have life-enhancing effects. Rehabilitation specialists might focus more on the arts as a resource for adults living with illness.
Reynolds, F. (2003). Reclaiming a positive identity in chronic illness through artistic occupation. Occupation, Participation and Health (OTJR) (formerly The Occupational Therapy Journal of Research), 23(3), 118-127.
Article presents narrative accounts of women who used artistic occupation as a means of reconstructing a positive self and identity during chronic illness. In-depth interviews were conducted with the participants who engaged in textile arts (embroidery, appliqué, quilting, and mixed-media art). Analysis of the interviews revealed that the participants’ engagement in creating art gradually contributed to a positive identity as a textile artist. Four main process of identity reconfiguration through artistic occupation were identified: (1) reconnection with the previous, pre-illness self; (2) positive personal identity growth and development; (3) a restored sense of expertise, status, and self-esteem; and (4) a socially validated identity.
Reynolds, F., & Prior, S. (2003, July). ‘A lifestyle coat-hanger’: A phenomenological study of the meanings of artwork for women coping with chronic illness and disability. Disability and Rehabilitation, 25(14) 785-794.
Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being.
Method: Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out.
Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a ‘lifestyle coat-hanger’ organising numerous further roles and act! ivities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before.
Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.
Reynolds, F., Vivat, B., & Prior, S. (2008). Women’s experiences of increasing subjective well-being in CFS/ME through leisure-based arts and crafts activities: A qualitative study. Disability & Rehabilitation, 30(17), 1279-1288.
Purpose: To understand the meanings of art-making among a group of women living with the occupational constraints and stigma of CFS/ME. The study explored their initial motives for art-making, and then examined how art-making had subsequently influenced their subjective well-being.
Method: Ten women with CFS/ME were interviewed; three provided lengthy written accounts to the interview questions.
Findings: Illness had resulted in devastating occupational and role loss. Participants took many years to make positive lifestyle changes. Art-making was typically discovered once participants had accepted the long-term nature of CFS/ME, accommodated to illness, and reprioritized occupations. Several factors then attracted participants specifically to art-making. It was perceived as manageable within the constraints of ill-health. Participants also tended to be familiar with craft skills; had family members interested in arts and crafts, and some desired a means to express grief and loss. Once established as a leisure activity, art-making increased subjective well-being mainly through providing increased satisfaction in daily life, positive self-image, hope, and contact with the outside world. Participants recommended provision of occupational/recreational counselling earlier in the illness trajectory.
Conclusions: Creative art-making occurred as part of a broader acceptance and adjustment process to CFS/ME, and allowed some psychological escape from a circumscribed lifeworld.
Roessler, R. T., Turner, R. C., Robertson, J. L., & Rumrill, P. D. (2005). Gender and perceived illness severity: Differential indicators of employment concerns for adults with multiple sclerosis. Rehabilitation Counseling Bulletin (ARCA), 48(2), 66-74.
Men and women with different levels of perceived severity of multiple sclerosis (MS) completed a survey eliciting their employment concerns. Results indicated that adults with MS were dissatisfied with 6 types of employment services and policies: (1) employer support, (2) program knowledge, (3) external support, (4) service provision, (5) work potential, and (6) prescriptions and health care. Findings also indicated gender and severity interaction, which are discussed in terms of implications for rehabilitation.
Roetzheim, R. G., & Chirikos, T. N. (2002, November). Breast cancer detection and outcomes in a disability beneficiary population. Journal of Health Care for the Poor and Underserved, 13(4), 461-476.
Women with disabilities may be at higher risk of late-stage breast cancer. Using the 1991-93 Medicare-Surveillance Epidemiology and End Results (SEER)-linked data set, the authors compared stage at diagnosis and mortality, for Social Security Disability Insurance (SSDI)-qualifying women and similarly aged non-SSDI qualifying women. Disabled patients were diagnosed at a later American Joint Committee on Cancer stage. Disabled patients had higher all-cause mortality rates but had similar breast cancer-specific mortality. Disabled women belonging to Medicare HMOs tended to have earlier stage diagnosis and better survival compared to Medicare fee-for-service (FFS) insurance. In conclusion, disabled patients tended to be diagnosed with breast cancer at a later stage and to have higher mortality. These findings were more pronounced in Medicare FFS than in Medicare HMOs.
Ryan, C. (2004, June). Am I not a woman: The rhetoric of breast cancer stories in African American women’s popular periodicals. Journal of Medical Humanities, 25(2), 129-150.
Representations of breast cancer are examined in three popular women’s periodicals targeting African American readers: Ebony, Essence, and Black Elegance. The researcher focuses specifically on representations that reflect certain ideas/ideals about the sharing and creating of information about the disease and related issues, such as health care and body image. Magazine selections are analyzed and critiqued according to the epistemological principles outlined by Patricia Hill Collins in Black Feminist Thought. The author calls for further research into how and why particular social and cultural groups consume information about health and illness in particular ways.
Saad, S. C. (1999, January). The gender of chronically ill characters in children’s realistic fiction, 1970–1994. In M. Teppner (Ed.), Gender and disability [Special issue]. Sexuality and Disability, 17(1), 79-92.
The purpose of this study was to determine how the numbers of female chronically ill characters compared with the numbers of male chronically ill characters in children’s books. I used 100% sampling to investigate the 78 children’s chapter books with chronically ill main characters which met the criteria for inclusion in this study. Four-fifths (80.8%) of the children’s books studied had female chronically ill main characters, 18% had chronically ill male main characters, and 1.3% had a chronically ill main character of each gender. This preponderance of ill female characters reflects the traditional societal view that female bodies are inherently pathological.
Sallinen, M., Kukkurainen, M. L., Peltokallio, L., & Mikkelsson, M. (in press). Women’s narratives on experiences of work ability and functioning in fibromyalgia. Musculoskeletal Care.
Background: Fibromyalgia is a significant health problem for women of working age. However, little is known about the long-term effects of fibromyalgia in everyday life or on work ability.
Methods: A narrative interview study was conducted to explore the experiences of work ability and functioning of patients with a long history of fibromyalgia. Twenty women, aged 34-65 years, were purposively chosen for the interviews, to reach a wide range of patients with different social and professional backgrounds.
Results: Four types of experience concerning work ability were identified in the narratives: confusion, coping with fluctuating symptoms, being in between and being over the edge of exhaustion. Severe pain and fatigue symptoms, combined with a demanding life situation and ageing, seemed to lead to substantial decrease in work ability and functioning over the long term. In the narratives, vocational rehabilitation or adjustments to work tasks were rarely seen or were started too late to be effective.
Conclusions: Exploring the life stories of women with fibromyalgia can reveal the perceived causes and consequences of fibromyalgia related to work ability or disability, which can be utilized in developing client-centred rehabilitation approaches and effective interventions to support work ability and avoid premature retirement in fibromyalgia patients.
Sallfors, C., & Hallberg, L. (2009). Fitting into the prevailing teenage culture: A grounded theory on female adolescents with chronic arthritis. International Journal of Qualitative Studies on Health and Well-being, 4(2), 106-114.
The aim of this study was to deepen the understanding of female adolescents’ daily living with chronic arthritis. Tape-recorded open interviews were conducted once with six teenage girls (14–17 years), who also wrote diaries for a 12-month period. In addition, 12 interviews of female adolescents diagnosed with chronic arthritis selected from another sample in an earlier study by the authors were included in the data. The Grounded Theory (GT) method was used for analysing the diaries and the transcribed interviews. A core category, labelled Fitting into the prevailing teenage culture, and four related categories labelled (1) mastering a body in pain; (2) living one day at time; (3) using social support; and (4) fighting for health emerged. The categories formed a substantive theory illuminating living with chronic arthritis during adolescence. The theory explains and provides a deeper understanding of the main concern of these female adolescents and their strategies in managing their situation.
Sandelowski, M., Barroso, J., & Voils, C. I. (2009, April). Gender, race/ethnicity, and social class in research reports on stigma in HIV-positive women. Health Care for Women International, 30(4), 273-288.
The layering of HIV-related stigma with stigmas associated with gender, race, and class poses a methodological challenge to those seeking to understand and, thereby, to minimize its negative effects. In this meta-study of 32 reports of studies of stigma conducted with HIV-positive women, we found that gender was hardly addressed despite the all-female composition of samples. Neither sexual orientation nor social class received much notice. Race was the dominant category addressed, most notably in reports featuring women in only one race/ethnic group. The relative absence of attention to these categories as cultural performances suggests the recurring assumption that sample inclusiveness automatically implies the inclusion of gender, race, and class, which is itself a cultural performance.
Schneider, K. (2006). To the left of inspiration: Adventures in living with disabilities. Indianapolis: Dog Ear Publishing.
When is the last time you’ve read an honest, funny book about living with disabilities? To the Left of Inspiration: Adventures in Living with Disabilities is just such a book. Fifty-four million Americans have chronic illnesses or disabilities requiring them to make accommodations in the ways they live their lives. You may have students, customers, and clients with disabilities and want to interact with them knowledgeably and sensitively. Or perhaps you are adjusting to a new illness or disability and have accepted that it’s a whole new world you are entering. You’ll learn from a woman blind from birth about activities of daily life, like talking to children about disabilities, traveling, going to church, and working. Kathie’s life experiences highlight the warmth and humor in everyone’s struggles to be humane with each other, whether we are temporarily able-bodied or disabled. Disabilities can be more than adjusted to; they can be mined for pearls and Kathie shares some of hers with you. Kathie is a guide, familiar with the territory, who will walk beside you as you negotiate your new world. You won’t learn how to overcome your disability, but you will laugh in recognition and hope as you read To the Left of Inspiration. Come along with Kathie and her Seeing Eye dog on their adventures; your life will be enriched.
Schootman, M., & Jeffe, D. B. (2003, March). Identifying factors associated with disability-related differences in breast cancer screening (United States). Cancer Causes and Control, 14(2), 97-107.
Objective: The purpose of this study was to identify factors that could explain breast cancer underutilization among women age 40 and older with disabilities.
Methods: The data are part of the 1996 Medical Expenditure Panel Survey (MEPS), a nationally representative sample of medical care use and expenditures in the United States. Two different definitions of disability were used: limitations in activities of daily living (ADL) and limitations in instrumental activities of daily living (IADL). Annual mammography was used as the outcome measure. The data are restricted to noninstitutionalized women at least 40 years of age.
Results: Crude odds ratios showed that women with long-term limitations in their ADLs or IADLs were less likely to be screened for breast cancer compared to those without such limitations. These associations remained while controlling for possible confounders and were observed among women age 40 or older, those 50–69, and among women 70 years of age and older.
Conclusions: Reasons for the underutilization of breast cancer screening among women with long-term disabilities remain elusive. Future studies need to examine additional factors in order to improve screening use, especially among women with long-term disabilities who are 50–69 years of age, for whom screening has been shown to be beneficial in terms of reduced risk of mortality from breast cancer.
Sered, S., & Tabory, E. (1999, June). “You are a number, not a human being”: Israeli breast cancer patients’ experiences with the medical establishment. Medical Anthropology Quarterly, 13(2), 223-252.
In the course of interviews with Israeli women who had recently been treated for breast cancer, we found that our informants tended to offer us “treatment narratives” rather than, or sometimes in addition to, the “illness narratives” made famous by Arthur Kleinman. For the women we interviewed, treatment narratives constitute verbal platforms on which to explore what it means to be human during a period in which one’s body, spirit, and social identity are undergoing intense transformations. A central theme in these narratives is the Hebrew word yachas, loosely translated as “attitude, ” “attention,” or “relationship.” The women consistently contrasted the good yachas of medical staff who treated them “like humans” or like ” real friends” with the bad yachas of staff who treated them like numbers, machines, or strangers. We argue that the women used language (in various contexts) as a means of resisting the medical culture’s pattern of treating patients as “nonhumans.”
Shannon, C. S., & Shaw, S. M. (2005). “If the dishes don’t get done today, they’ll get done tomorrow”: A breast cancer experience as a catalyst for changes to women’s leisure. Journal of Leisure Research, 37(2), 195-213.
Breast cancer is a life threatening illness experienced by many women. Although research is being conducted in various disciplines, the effect of breast cancer on the role of leisure throughout the illness experience has not been considered. The purpose of this study was to understand in what ways a breast cancer diagnosis and treatment alters women’s experience and choice of leisure activities post-treatment. Eight women with breast cancer experiences participated. The findings indicated women’s leisure changed by their making leisure a priority, seeking more meaningful leisure, and engaging in health promoting leisure. The research has implications for furthering our understanding of leisure entitlement, purposive leisure, and the ethic of care.
Shaul, M. P. (1997). Transitions in chronic illness: Rheumatoid arthritis in women. Rehabilitation Nursing, 22(4), 199-205.
Article about how women learn to live with rheumatoid arthritis (RA), and about the implications for nursing practice. The article is based on a qualitative study of the transition process that followed women with RA over a 3-year period.
Shawler, C., & Logsdon, D. (2008, January). Living vigilant lives with chronic illness: Stories from older low-income minority women. Health Care for Women International, 29(1), 76-84.
Our purpose in this pilot study is to test the validity of the concepts in the Evolutionary Empowerment-Strength model, which was developed through analysis of data from a previous study that observed how older women coped with a hip fracture. Thirteen minority women aged 63 to 88 years with chronic illness participated in this pilot study. Findings indicate four themes: (1) Positive Self-Talk, (2) Strong Spiritual Faith, (3) Refusal to Dwell on Deficits, and (4) Sense of Survival. Three of the five concepts in the Evolutionary Empowerment-Strength model were supported, which demonstrates initial usefulness of the model for varied populations.
Sheena, G., Sullivan, S. G., Slack-Smith, L. M., & Hussain, R. (2004, December). Understanding the use of breast cancer screening services by women with intellectual disabilities. Social and Preventive Medicine, 49(6), 398-405.
Objectives: The uptake of mammography for breast cancer screening is considerably lower among women with intellectual disability than for women in the general population. The purpose of the present study was to investigate carer perceptions of barriers and enablers to mammography use by these women.
Methods: To determine the reasons why women with intellectual disability are not utilising screening services, a series of focus groups were held with social trainers working in accommodation provided for people with intellectual disability.
Results: The major themes identified included the need for a medical referral or invitation from the mammography service to motivate people to attend; the belief that many women with intellectual disability would not understand the procedure or why it needs to be done and therefore would experience fear and anxiety to a greater extent than women in the general population; and that physical disabilities comorbid in many of the women would limit their ability to be adequately accommodated by the machines used to take a mammogram.
Conclusions: The social trainers agreed that many of the barriers to screening would be difficult to overcome and supported alternative strategies to mammography, such as clinical breast examination.
Sheffer, C. E., Cassisi, J. E., Ferraresi, L. M., Lofland, K. R., & McCracken, L. M. (2002, December). Sex differences in the presentation of chronic low back pain. Psychology of Women Quarterly, 26(4), 329-340.
Sex differences in 351 patients with chronic low back pain were examined. Biological, psychological, and psychosocial factors were considered. Sex differences in adaptive functioning were consistent with traditional gender roles. Significant interactions were found for sex and employment status, and sex and marital status. Retired women reported more pain and less activity than retired men. Retired men reported the least pain of any group. Outdoor work and social activities show opposite within–group patterns for men and women when stratified by employment status. Marriage was associated with more household work for women and less for men. The financial and social contexts of employment status and marriage are different for men and women. Results suggest the treatment of women with chronic low back pain requires attention to work in the home and the financial and social context of work outside the home.
Sinclair, V. G., & Wallston, K. A. (2001, Fall). Predictors of improvement in a cognitive-behavioral intervention for women with rheumatoid arthritis. Annals of Behavioral Medicine, 23(4), 291-297.
In this article we present a secondary analysis of data from a brief cognitive-behavioral intervention for women with rheumatoid arthritis that resulted in significant overall improvements in personal coping resources, pain coping behaviors, psychological well-being, and fatigue. Not every participant, however, improved during the intervention. Establishing predictors of improvement in brief interventions is important to optimize the cost-effective use of these resources. In search of predictors of improvement, we examined demographic and background variables, personal coping resources, pain coping behaviors, and social support. Both linear and quadratic effects were analyzed, comparing baseline measures to both immediate postintervention and 3-month follow-up outcomes using standardized indexes ofpredictors and criteria variables. After removing the effects of baseline scores on the outcomes index, significant predictors of improvement included length of time since diagnosis, personal coping resources, and maladaptive and adaptive pain coping behaviors. Both linear and quadratic effects were found, although this varied as a function of type of predictor.
Slawta, J. N., McCubbin, J. A., Wilcox, A. R., Fox, S. D., Nalle, D. J., & Anderson, G. (2002). Coronary heart disease risk between active and inactive women with multiple sclerosis. Medicine & Science in Sports & Exercise, 34(6), 905-912.
Purpose: Physical activity is strongly recommended as a principal component of coronary heart disease (CHD) risk factor management aimed at favorably lowering abdominal fat accumulation, lowering levels of triglyceride (TG), raising levels of high-density lipoprotein-cholesterol (HDL-C), and improving insulin sensitivity. Although physical activity practices are reported to be low in women with multiple sclerosis (MS), some women with MS remain physically active despite their disability. Thus, the primary aim of the study was to determine whether abdominal fat accumulation and levels of TG, HDL-C, and glucose differ between active and inactive women with MS.
Methods: The study sample consisted of 123 women with MS, aged 23-72 yr. Venous blood was collected for measurement of lipids, lipoprotein-cholesterol, and glucose. Skin-fold thicknesses and girth circumferences were obtained for estimation of total and abdominal body fat. Leisure-time physical activity (LTPA) during the last 12 months was assessed by the physical activity questionnaire used in the Postmenopausal Estrogens/Progestins Intervention (PEPI) Study. Eating habits were assessed by the Block Food Frequency Questionnaire. Results: LTPA was significantly associated with lower waist circumference (P = 0.0001), lower TG levels (P = 0.0005), and lower glucose levels (0.002). After adjusting for several covariates, women participating in low- to moderate-intensity LTPA had significantly lower waist circumferences, TG levels, and glucose levels relative to inactive women.
Conclusion: Low- to moderate-intensity LTPA was significantly associated with less abdominal fat accumulation, lower levels of TG, and lower levels of glucose in the present sample of women with MS. These findings suggest that exercise levels attainable by women with MS may improve CHD risk and contribute to important health-related benefits.
Soderberg, S., & Lundman, B. (2001, October-November). Transitions experienced by women with fibromyalgia. Health Care for Women International, 22(7), 617-631.
Fibromyalgia (FM) is a chronic pain syndrome the hallmarks of which are a chronic diffuse musculoskeletal pain, tender points, and fatigue. The majority of those who have FM are middle-aged women. The aim of this study was to illuminate the transitions experienced by women with FM. Twenty-five women with FM were interviewed about living with FM. The interviews were analyzed using thematic content analysis. The analysis revealed five categories; transitions in patterns of daily life, family life, social life, and working life, and learning to live with the changes brought about by FM. The categories were subsumed into one theme: FM as the choreographer of activity and relationships. The transitions experienced were illuminated in a core story. The experience of transitions is apparently something that is invisible to almost everyone except the women themselves. Paradoxically, the women described transitions in life due to the illness, but they felt that other people saw them as healthy. It is like living in two worlds simultaneously, the world of the sick and the world of the healthy.
Somjai, A., & Chaipoom, A. (2006, September). Psychosocial needs of women with cancer of the reproductive system: A comparison between Buddhist and Muslim patients in Thailand. Mental Health, Religion & Culture, 9(4), 379-388.
The aims of this study were (1) to compare the differences in psychosocial needs and needs-met between Buddhist and Muslim patients with cancer of the female reproductive system; and (2) to identify factors associated with those needs, and the perception of responses to their needs. The subjects were 45 Thai Buddhist and 45 Thai Muslim patients, with cancer of the reproductive system, who were admitted to a gynecological ward of a university hospital in southern Thailand. A structured interview questionnaire concerning demographic and disease characteristics, and eight categories of psychosocial needs and needs-met (hope, more information, moral support, acceptance, relief of anxiety, economic support, discussion about death, and privacy) was given to the patients an average of six days after admission. Both Buddhist and Muslim patients had overall high psychosocial needs that were not fully met. Muslims had significantly higher needs for acceptance, relief of anxiety, economic support, discussion of issues related to death, and privacy than had Buddhists. The needs scores were higher than the needs-met scores for all categories in both Buddhist and Muslim patients. Being Muslim was the only factor related with the change in the overall needs score. The type and stage of cancers were significantly associated with change in the needs-met scores. Ovarian cancer patients had higher needs-met scores than cervical cancer patients, and patients in the higher stages of illness had lower needs-met scores than those in stage 1. The study revealed a high level of psychosocial needs in female cancer patients. In future planning for the provision of nursing care for these patients, the particular needs of different ethnic groups and patients in different types and stages of cancers should be considered.
Speraw, S. (2009). “Talk to me—I’m human”: The story of a girl, her personhood, and the failures of health care. Qualitative Health Research, 19(6), 732-743.
Perspectives on the concept of personhood and its relationship to health care delivery are considered in the context of the life of an adolescent with multiple disabilities. One phenomenological interview lasting 3 hours illuminated life-long experiences of suffering, healing, and the quest to be treated as human, as perceived by a 16-year-old girl disfigured by multiple cancer treatments. Age-appropriate development is the ground of her existence, whereas the quality of relationships with care providers and the extent to which they demonstrate regard for her value as a person are figural. Health care providers have often failed to interact with her in ways supporting dignity and growth, treating her with “care” that is antithetical to the aims of their professions. The case has relevance for health care education and practice, challenging professionals to examine their views on personhood and self-care agency, and the ways in which those views impact the care they provide.
Stamm, T. A., Machold, K. P., Smolen, J., & Prodinger, B. (in press). Life stories of people with rheumatoid arthritis who retired early: How gender and other contextual factors shaped their everyday activities, including paid work. Musculoskeletal Care Early View.
Objective: The aim of the present study was to explore how contextual factors affect the everyday activities of women and men with rheumatoid arthritis (RA), as evident in their life stories.
Methods: Fifteen people with RA, who had retired early due to the disease, were interviewed up to three times, according to a narrative biographic interview style. The life stories of the participants, which were reconstructed from the biographical data and from the transcribed told story were analysed from the perspective of contextual factors, including personal and environmental factors. The rigour and accuracy of the analysis were enhanced by reflexivity and peer-review of the results.
Results: The life stories of the participants in this study reflected how contextual factors (such as gender, the healthcare system, the support of families and social and cultural values) shaped their everyday activities. In a society such as in Austria, which is based on traditional patriarchal values, men were presented with difficulties in developing a non-paid-work-related role. For women, if paid work had to be given up, they were more likely to engage in alternative challenging activities which enabled them to develop reflective skills, which in turn contributed to a positive and enriching perspective on their life stories. Health professionals may thus use some of the women’s strategies to help men.
Conclusion: Interventions by health professionals in people with RA may benefit from an approach sensitive to personal and environmental factors.
Steck, B., Amsler, F., Kappos, L., & Bürgin, D. (2000, June). Gender-specific differences coping with chronic somatic disease (e.g. Multiple Sclerosis). Archives of Women’s Mental Health, 3(1), 15-21.
Based on the study of 48 patients and their partners by means of semi-structured interviews, we evaluated how the ability to cope (Coping Index) with a chronic somatic disease (e.g. Multiple Sclerosis) is affected by gender, the degree of disability (assessed by the Kurtzke EDSS) and associated depression (measured by the BDI).
An associated depression in a sick wife induces depressive symptoms in the healthy husband; whereas healthy wives are not affected by the depression of their sick husbands.
The process of coping according to gender shows that male coping, whether as patients or partners, is influenced neither by the degree of disability nor by associated depression (their own or their partner’s). Women as patients or partners are influenced in their coping process by the degree of impairment (negatively for their own, positively with increasing disability of their partner). Their ability to cope is negatively affected by an associated depression (their own or their partner’s). The evaluation of the MS patient should include the partner to devise individualised treatment approaches.
Stoddard Holmes, M. (2006, Fall). Pink ribbons and public private parts: On not imagining ovarian cancer. Literature and Medicine, 25(2), 475–501.
Ovarian cancer is the deadliest of all gynecological cancers. Diagnosis is often late-stage when the disease has spread and is harder to manage. Primarily non-visual and sometimes ambiguous early symptoms are exacerbated by the rarity and metaphoric/metonymic character of representations of the ovaries or ovarian disease in television, film, and literature. More representations of ovarian cancer in public and popular culture, as well as images that appeal to a wider range of sensory experience, may help the problem of late-stage diagnosis by producing greater practical awareness of the ovaries and ovarian disease.
Stuifbergen, A. K., Harrison, T. C., Becker, H., & Carter, P. (2004). Adaptation of a wellness intervention for women with chronic disabling conditions. Journal of Holistic Nursing, 22(1), 11-31.
Women with chronic disabling conditions live with multiple symptoms that decrease their ability to function in society, and they may be at elevated risk for further morbidity with age. Despite research indicating that health-promoting behaviors decrease the risk for further morbidity, few interventions have been designed to help women with chronic disabling conditions promote their health. The purpose of this article is to present the results of a pilot study of a wellness intervention adapted for use with women with fibromyalgia syndrome (FMS). First, the development of the original wellness intervention for women with multiple sclerosis (MS) will be described. Next, the steps taken to adapt the intervention to the needs of women with FMS will be described. Finally, it will be argued that commonalities in symptoms and social experiences and the universal need for health-promoting skills make this intervention adaptable to multiple groups of women with chronic disabling conditions.
Sulik, G. A. (2007). The balancing act: Care work for the self and coping with breast cancer. Gender & Society, 21(6), 857-877.
Care work is both gendered and relational, defined typically as the care women do for others. When faced with a chronic life-threatening illness such as breast cancer, women must learn to perform care work for the self. Drawing from participant observation and 60 in-depth interviews, the author explores the gendered strategies and justifications women use to cope with breast cancer and engage in care work for the self. Women in the study used a multiprocess, gendered “balancing act” to learn to balance their needs with the needs of others, which involves setting boundaries and establishing criteria for accepting and asking for help. These strategies reflect a negotiation of normative expectations that stress women’s selflessness, empathy, and caring for others.
Swoboda, D. A. (2005/2006, Fall). Embodiment and the search for illness legitimacy among women with contested illnesses. Michigan Feminist Studies, 19, 73-90.
“A study was conducted that sought to expand understanding of illness embodiment by addressing three questions: 1) How do women with contested illnesses explain their bodily suffering when they encounter uncertainty regarding illness legitimacy? 2) How does a contested illness affect a woman’s sense of her bodily abilities and limitations? 3) How does the experience of living with a contested illness alter a woman’s relationships to others?” (p. 75).
Tejeda, S., Thompson, B., Coronado, G. D., & Rees, J. M. (2006, November). A cervical cancer curriculum for Hispanic adolescents in rural high schools: A pilot study. Journal of Health Care for the Poor and Underserved, 17(4), 734-744.
We assessed the effectiveness of a one-hour curriculum about cervical cancer for high school students. The curriculum was developed and delivered to 142 female students in the 9th to 12th grade at two high schools in rural Eastern Washington State. Self-administered questionnaires assessed changes in knowledge, beliefs, and attitudes related to cervical cancer and Pap smears. Baseline results from a predominantly Hispanic adolescent sample (73%) indicated low pre-test knowledge and negative beliefs and attitudes. Post-test results indicated that there was a significant change in the intervention group for knowledge questions when compared with the control group. Only some changes to more positive beliefs and attitudes about cervical cancer and screening were significant in the post-test. The findings suggest that a culturally appropriate high school curriculum may inform young Hispanic women about important cervical cancer screening practices.
Thorne, S., McCormick, J., & Carty, E. (1997, January-February). Deconstructing the gender neutrality of chronic illness and disability. Health Care for Women International, 18(1), 1-16.
Although a great deal has been written in the fields of women’s health and disability/chronic illness, there is surprisingly little cross-fertilization. The dominant narrative within society orients us toward a view of chronic illness and disability that is gender neutral and devoid of social context. Examination of the ways in which chronic illness and disability are differently experienced by men and women creates a foundation upon which the implications of the dominant narrative can be explored. In this analysis, the authors find clinical, sociopolitical, and theoretical implications that derive from the traditional reluctance to consider the intersection of these fields of study. They conclude with recommendations for broadening our vision, correcting the omissions within our knowledge, and rethinking our part in contributing to inequities within society.
Tüzün , E. H., Albayrak , G., Eker , L, Sözay , S., & Daskapan, A. (2004, February). A comparison study of quality of life in women with fibromyalgia and myofascial pain syndrome. Disability & Rehabilitation, 26(4), 198-202.
Purpose: To compare the quality of life scores of fibromyalgia patients with myofascial pain syndrome patients.
Method: Thirty-three fibromyalgia patients, 33 myofascial pain syndrome patients, and 33 age-matched controls completed Beck Depression Inventory and Short Form-36 questionnaires.
Results: Compared with myofascial pain syndrome patients, fibromyalgia patients reported significantly more often fatigue, numbness, tingling, gastrointestinal discomfort, and poor sleep. The mean scores on VAS and on Beck Depression Inventory were significantly higher in fibromyalgia patients than myofascial pain syndrome patients. Patients with fibromyalgia had significantly poorer health than the patients with myofascial pain syndrome in pain, general health, vitality, and role emotional subscales.
Conclusions: The quality of life profile of fibromyalgia patients is quite different from those in the myofascial pain syndrome group. Myofascial pain syndrome impacted mostly on physical health whereas fibromyalgia impacted on both physical and mental health.
Turk, D. C., & Okifuji, A. (1999, August). Does sex make a difference in the prescription of treatments and the adaptation to chronic pain by cancer and non-cancer patients? Pain, 82(2), 139-148.
The literature suggests that the sex of patients is an important factor in understanding how they are treated by health care professionals and how they adapt to their symptoms. In two groups of patients with chronic pain (n=428 non-cancer (Study 1) and n=143 cancer-related (Study 2)), men and women were compared on medications prescribed, treatment history, and coping and adaptation. In Study 1 with the non-cancer pain patients, there were no significant differences between the sexes in past treatments, current analgesic use, pain, or disability. Women were significantly more depressed and were more likely to receive antidepressants than men. Subgrouping patients on the basis of pain-adaptation responses yielded groups with distinct psychosocial and behavioral characteristics. In Study 2 with the cancer pain patients, men and women did not show significant differences on any variables. Consistent with the results of Study 1, however, psychological subgroups differed significantly in pain severity, mood and disability regardless of sex. The results of both studies suggest that the role of patients’ sex in chronic pain may be less important than their psychosocial and behavioral responses. Thus, it appears that knowing the psychological characteristics of patients may be more important than their sex.
Updegraff, J. A., Taylor, S. E., Kemeny, M. E., & Wyatt, G. E. (2002). Positive and negative effects of HIV infection in women with low socioeconomic resources. Personality and Social Psychology Bulletin, 28(3), 382-394.
Predictions generated by cognitive adaptation theory and conservation of resources theory were tested with regard to positive and negative changes associated with HIV infection in an ethnically diverse, low socioeconomic status sample of 189 HIV-positive women. Women reported a significantly greater number of benefits than losses in their experiences with HIV infection. Changes in the domains of the self and life priorities were significantly positive, whereas changes in romantic/sexual relations and view of body were significantly negative. Women who reported more benefits were less likely to report depressive and anxious symptoms. Although health status and optimism significantly predicted depression, anxiety, and negative HIV-related changes, socioeconomic resources (education and income) were the most significant predictors of HIV-related benefit finding. Implications of these results are discussed.
Vernon, I. S., & Jumper Thurman, P. (2009, Summer). Native American women and HIV/AIDS: Building healthier communities. The American Indian Quarterly, 33(3),
352-372.
“…we share general information about the health of Natives, focus on the health of Native women and their risk factors for contracting HIV/AIDS, and offer a model for change—the Community Readiness Model (CRM). We believe the CRM will build a healthy environment that can develop culturally responsive HIV/AIDS interventions and preventions for Native women and their communities.” (p. 352)
Vyavaharkar, M. V., Moneyham, L., & Corwin, S. (2008). Health care utilization: The experiences of rural HIV-positive African American women. Journal of Health Care for the Poor and Underserved, 19(1), 294-306.
This qualitative study explored perceptions and experiences of HIV-positive rural African American women regarding availability, accessibility, and quality of health care and social services. Twenty-two women residing in rural areas of South Carolina were recruited to participate in one of three focus groups. A conceptual model of health services utilization was used to guide the study and served as a framework for coding data. Verbatim transcripts of group discussions were analyzed using content analysis to code and identify data categories. Data revealed common perceptions of lack of services and inferior quality of available services to meet some of their most important needs. Overall, findings provide a picture of women whom the health care/social services system fails to serve. The findings have significant implications for increasing resources and designing interventions that empower these women and enhance their quality of life.
Walton, J., Craig, C., Derwinski-Robinson, B., & Weinert, C. (2004). I am not alone: Spirituality of chronically ill rural dwellers. Rehabilitation Nursing, 29(5), 164-168.
Study examined what spirituality means to chronically ill rural dwellers and the impact it has on their illness. Content analysis was used to analyze the data obtained from phone interviews with 10 chronically ill women. The theme “means the world to me” described what spirituality meant to participants. The following themes described how spirituality related to chronic illness: (1) I am not alone, (2) putting on a happy face, (3) others are worse off, and (4) transcending despair and letting go. Findings from this study provide rehabilitation nurses with insight into the spirituality needs of chronically women living in rural areas.
Weinert, C. (2000). Social support in cyberspace for women with chronic illness. Rehabilitation Nursing, 25(4), 129-135.
Article concerning the Woman to Woman Project, a health promotion program in which women with chronic health conditions living in isolated rural communities provide information and support to each other via the Internet. Results are presented from a study comparing psychosocial outcomes and responses to participation by women who used computers and the Internet and women who used their usual sources of support without computers or the Internet. Implications for nursing are discussed.
Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. London and New York: Routledge.
In The Rejected Body, Susan Wendell, a woman with Chronic Fatigue Syndrome, draws parallels between her own experiences with illness to feminist theory and Disability Studies. She argues (as many others have), that feminist theory has neglected to incorporate the perspectives and experiences of women with disabilities, and that these perspectives must be included in future discussions of feminist ethics, the body, and the social critique of the medical model. Wendell also examines how cultural attitudes about the body contribute to disability oppression and society’s unwillingness to accept different types of bodies.
Wendell, S. (2001, Fall). Unhealthy disabled: Treating chronic illnesses as disabilities. In E. Kittay, S. Silvers, & S. Wendell S. (Eds.), Special issue: Feminism and disability. Hypatia, 16(4), 17-33.
Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. I argue that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and “cure” of disabilities.
Werner, A., Isaksen, L. W., & Malterud, K. (2004, September). ‘I am not the kind of woman who complains of everything’: Illness stories on self and shame in women with chronic pain. Social Science & Medicine, 59(5), 1035-1045.
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as ‘strong’, and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women’s descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the skepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in ‘storied form’ according to a gender work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.
Werner, A., Steihaug, S., & Malterud, K. (2003). Encountering the continuing challenges for women with chronic pain: Recovery through recognition. Qualitative Health Research, 13(4), 491-509.
This work is based on experiences from a group treatment for women with chronic musculoskeletal pain. The authors explored the nature and consequences of the reported benefits from being met with recognition in the groups, focusing the potential usefulness in everyday life. In-depth interviews of six participants of various age and backgrounds were conducted. The women’s answers reflected how recognition had enhanced strength, confidence, and awareness expressed as increased bodily, emotional, and social competence. This competence provided tools to handle their pain and illness. Achieving the sense of a better life with chronic pain represents an important recovery process. Because of the normative and gendered way the term “coping(ability)” has been used, the authors introduce recovery competence as a more fruitful concept.
White, M. T., Lemkau, J. P., & Clasen, M. E. (2001). Fibromyalgia: A feminist biopsychosocial perspective. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23(1), 45-58.
Fibromyalgia (FM) is a syndrome predominantly experienced by women and characterized by pain, fatigue, sleep disturbance, and multiple tender points at distinct locations on the body. Because of its prevalence and the common comorbidity of FM with depression and other conditions that prompt sufferers to seek psychological care, it is incumbent upon psychologists to be familiar with the syndrome, competent to provide assistance to afflicted individuals, and aware of the impact of gender politics on fibromyalgia sufferers. We present an overview of the diagnosis and treatment of fibromyalgia, a brief summary of etiological possibilities, and a discussion of the experience of illness among affected individuals. We conclude by exploring the social construction of the syndrome from a feminist perspective.
Whitehead, K., & Williams, J. (2001, January). Medical treatment of women with lupus: The case for sharing knowledge and decision-making. Disability & Society, 16(1), 103-121.
Few women patients in this study were found to be active partners in the medical management of systemic lupus erythematosus (SLE). Despite the growing emphasis on doctors and patients sharing knowledge and decision-making power, most of the women were struggling to have their symptoms and needs taken seriously, and appeared relatively powerless in relation to the medical profession. Acknowledging patient expertise requires that doctors share some of their power, and we suggest this may be especially problematic when medical resources and power are primarily located in the hands of white men, and when the patients are typically women and often from the black community. Implications for action that are considered include maximising the influence of women with SLE on research, training and practice.
Wilken, H. A., Valente, T. W., Murphy, S., Cody, M. J., Huang, G., & Beck, V. (2007, July). Does entertainment-education work with Latinos in the United States? Identification and the effects of a telenovela breast cancer storyline. Journal of Health Communication, 12(5), 455-469.
This article examines the proposition that a popular form of entertainment, the telenovela, can educate Spanish-speaking viewers in the United States if accurate health information is presented in a dramatic, narrative format. Health professionals consulted on a breast cancer storyline in a Spanish-language telenovela, Ladron de Corazones, and the impact on viewers’ knowledge and behavioral intentions were assessed using three methods. First, an analysis of call attempts to 1-800-4-CANCER demonstrated a significant increase in calls when a PSA featuring the number aired during the program. Second, a nationwide telephone survey indicated that viewers, especially those who identify with Spanish-language television characters, gained specific knowledge from viewing the story and that male viewers were significantly more likely to recommend that women have a mammogram. Third, these trends were confirmed and further explored using focus groups of Ladron viewers. Implications for educating viewers using dramatic serials in the United States are discussed.
Wilson, R. T., Adams-Cameron, M., Burhansstipanov, L., Roubidoux, M. A., Cobb, N., Lynch, C. F., & Edwards, B. K. (2007, August). Disparities in breast cancer treatment among American Indian, Hispanic and non-Hispanic white women enrolled in Medicare. Journal of Health Care for the Poor and Underserved, 18(3), 648-664.
Because racial/ethnic disparities in breast cancer survival have persisted, we investigated differences in breast cancer treatment among American Indian, Hispanic, and non-Hispanic White (NHW) women. Surveillance, Epidemiology and End Results data linked to Medicare claims in New Mexico and Arizona (1987–1997) among enrollees aged 65 and older were used to identify treatment, treatment interval, and mortality risk associated with delays in care. We identified 2,031 women (67 American Indian, 333 Hispanic and 1,631 NHW women with time to treatment information. Treatment intervals from diagnosis to surgery (all stages, 18 versus 4 days, p<.001) and surgery to radiation (stages I/II, 69 versus 35 days, p<.01), were significantly greater for American Indian women than for NHW women. This disparity remained statistically significant after adjustment for age, stage, grade, year of diagnosis, poverty, and distance to care. There was no statistically significant difference in treatment among Hispanic women. Further, American Indian women without surgery within 6 months experienced a 5.6-fold higher breast cancer mortality (p<.05). The duration of time to surgery and radiation has not been previously reported for American Indian women. These results suggest older American Indian women experience significant delays in cancer treatment, resulting in greater breast cancer mortality.
Wong-Kim, E., & Merighi, J. R. (2007). Complementary and alternative medicine for pain management in U.S. – and foreign-born Chinese women with breast cancer. Journal of Health Care for the Poor and Underserved, 18(4), 118-129.
This study explores beliefs about complementary and alternative medicine (CAM) use for pain management among 15 U.S.-born and 15 foreign-born Chinese women with breast cancer. For this investigation, trilingual interviewers conducted individual, face-to-face, qualitative interviews in Cantonese, Mandarin, or English. All study participants lived in San Francisco, and the foreign-born women had resided in the U.S. for 15 years or fewer. Findings indicate that many participants consider CAM a viable method of pain management. However, concerns about affordability and quality of treatment prevent some women from using CAM on a regular basis. Many participants indicated that Western health care providers are poorly equipped to provide CAM to manage the pain resulting from breast cancer treatment. Future research should explore how access to CAM can be improved for poor and uninsured patients with cancer and how alternative approaches to pain management can be integrated more broadly in the U.S. health care system.
Yacoub Wasef, S. Z. (2004). Gender differences in systemic lupus erythematosus. Gender Medicine, 1(1), 12-17.
Background: Systemic lupus erythematosus (SLE) is known to be much more prevalent in females than in males, but the cause of this sexual predilection is not established. In addition, much controversy surrounds the differences in manifestations of SLE in both sexes.
Objective: This article reviews the possible etiologies of the greater prevalence of SLE in females, as well as the differences in the clinical presentation of the disease in both sexes.
Methods: Relevant studies were identified through a PubMed search for articles published between 1960 and 2001; no language restrictions were applied. Search terms included lupus, SLE, and gender differences. Books and online resources were also consulted.
Results: Potential causes of the female predilection for SLE included the effects of estrogen and its hydroxylation, decreased androgen levels, hyperprolactinemia, and differences in gonadotropin-releasing hormone (GnRH) signaling. Clinical manifestations of SLE included females having more frequent relapses, but the incidence of severe relapses was the same in both sexes. Raynaud phenomenon, arthritis, and leukopenia were more common in women, whereas skin manifestations, serositis, and renal involvement were more common in men. For neurologic manifestations, females with SLE experienced more psychiatric symptoms and headaches, whereas males with SLE experienced more seizures and peripheral neuropathy. Males with SLE also tended to have more severe renal disease and cardiorespiratory involvement.
Conclusions: The increased frequency of SLE among women may be attributed to differences in the metabolism of sex hormones and/or GnRH. Though less common in men, when it does occur SLE tends to run a more severe course—an important consideration in the diagnosis and follow-up of male patients with SLE.
Zautra, A. J., Johnson, L. M., & Davis, M. C. (2005). Positive affect as a source of resilience for women in chronic pain. Journal of Consulting and Clinical Psychology, 73(2), 212–220,
A sample of 124 women with osteoarthritis or fibromyalgia, or both, completed initial assessments for demographic data, health status, and personality traits and 10–12 weekly interviews regarding pain, stress, negative affect, and positive affect. Multilevel modeling analyses indicated that weekly elevations of pain and stress predicted increases in negative affect. Both higher weekly positive affect as well as greater positive affect on average resulted in lower negative affect both directly and in interaction with pain and stress. Finally, increases in weekly
negative affect and higher average negative affect related to greater levels of pain in subsequent weeks. In contrast, higher levels of overall positive affect predicted lower levels of pain in subsequent weeks.
Zautra, A. J., & Smith, B. W. (2001). Depression and reactivity to stress in older women with rheumatoid arthritis and osteoarthritis. Psychosomatic Medicine, 63(4), 687-696.
Objective: The purpose of this study was to examine the role of depressive symptoms in reactivity to stress and pain in older women with rheumatoid arthritis (RA) and osteoarthritis (OA).
Methods: Participants were 188 older women with RA (N = 87) and OA (N = 101). They were initially assessed for depressive symptoms and interviewed weekly for 12 to 20 weeks regarding interpersonal stress, arthritis pain, and negative affect.
Results: Hierarchical linear modeling (HLM) revealed that depressive symptoms were related to weekly elevations in arthritis pain, negative events, perceived stress, and negative affect for RA respondents and elevations in arthritis pain and negative affect for OA respondents. HLM analyses also indicated that depressive symptoms were related to increased reactivity to perceived stress and arthritis pain in people with RA, but not those with OA.
Conclusions: Depression may be related to elevations in pain for people with RA and OA and to elevations in stress and increased reactivity to stress and pain for those with RA.
Zauszniewski, J. A., McDonald, P. E., Krafcik, K., & Chung, C. (2002). Acceptance, cognitions, and resourcefulness in women with diabetes. Western Journal of Nursing Research, 24(7), 728-750.
The coexistence of diabetes and depression occurs frequently among young and middle-age women. Unless one is resourceful, simultaneous management of the symptoms of both conditions is especially challenging. Skills constituting resourcefulness are learned throughout life and are important for the optimal performance of daily activities. Little is known about specific factors that influence resourcefulness. In this study, contextual factors (diabetic and depressive symptoms)and cognitive factors (positive cognitions and acceptance of diabetes) were examined as antecedents of learned resourcefulness in 82 women with type 2 diabetes. Regression analyses showed that depressive symptoms and positive cognitions were significant antecedents of learned resourcefulness: Positive cognitions mediated the effects of depressive symptoms on learned resourcefulness. The findings suggest the need for interventions that focus on development of positive cognitions to better promote resourcefulness in women with type 2 diabetes who are at risk for depression.
Zavestoski, S., McCormick, S., & Brown, P. (2004, December). Gender, embodiment, and disease: Environmental breast cancer activists’ challenges to science, the biomedical model, and policy. In D. J. Hess (Ed.), Health, the environment and social movements [Special issue]. Science as Culture, 13(4), 563-586.
“As developed and developing societies increasingly alter their natural environments by introducing chemical and other industrial by-products, disease-based social movements aiming to link various diseases to environmental causes are becoming more common. The burden of scientific proof, among other factors, poses a significant challenge to these movements. We illustrate how gender identity serves both to constrain and enable activists in the environmental breast cancer movement (EBCM). We highlight how the EBCM’s attempt to emphasize possible environmental causes of breast cancer forces the movement to challenge the medical and popular explanations of breast cancer—what we call the dominant epidemiological paradigm—that point to personal lifestyle and genetics. The concept of the dominant epidemiological paradigm provides an analytical framework for exploring how gender concerns are central to environmental breast cancer activists’ efforts to link breast cancer to environmental causes. It also provides a framework to see how gender discrimination gets institutionalized, and how activists respond to that institutionalized discrimination by employing tactics that often centre on gender-based issues.”