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CHRONIC ILLNESSES

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.

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.

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.

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.

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."

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.
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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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., 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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. 

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.

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