Constructions of sexuality for midlife women living with chronic illness

AIM: In this paper, we reveal constructions of sexuality that were articulated by women who participated in an inquiry which aimed to understand the experiences of midlife women who live with chronic illness. The aim of this paper is to illuminate sexuality as an important health issue for women living with chronic illness and to offer ways that nurses may acknowledge and facilitate sexuality issues for women. BACKGROUND: The first author, as part of her doctoral study, corresponded with 81 women living with chronic illness. The participatory inquiry was framed by feminist principles and enabled women to anonymously share their experiences and collaborate in the direction of the research. During the analysis phase of the research, it became evident that illness had altered the way in which women conceptualized sexuality. DESIGN: The three authors performed secondary analysis of the original data set in order to re-examine the impact that chronic illness had on the sexuality of midlife women who live with chronic illness. Whilst we acknowledge that sexuality has multiple meanings, in this paper we describe the way in which women themselves have constructed and articulated their sexuality. FINDINGS: We found that sexuality incorporated women's desires, appearance, sexual feelings and expression and imposed on aspects of their lives that they had not needed to acknowledge before illness intruded. Three concerns are discussed; the changing body, meeting the needs of others and communicating sexuality. CONCLUSIONS: This paper reveals that issues of sexuality are an important health concern for women who live with long-term illness and should be acknowledged in sensitive and responsive health practices. The paper concludes that it is important for nurses to provide women opportunity for open and genuine communications about sexuality. In this way, a foundation of acceptance for the whole person is established which provides women permission to ask questions and seek assistance with sexuality issues.     

Chronic illness: reflections on a community-based action research programme

AIM: The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. BACKGROUND: Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. DESIGN: The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. FINDINGS: We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. CONCLUSION: If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.     

Management of chronic illness: voices of rural women

BACKGROUND: The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. AIM: To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. METHOD: The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. FINDINGS: Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. CONCLUSIONS: The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.     

Corporeality: women's experiences of a body with rheumatoid arthritis

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.     

Immigrant women speak of chronic illness: the social construction of the devalued self

This inquiry into the existential experience of chronic illness by immigrant women begins from a phenomenological perspective, and proceeds to examine the context in which women's experiences are embedded. It is argued that multiple factors influence the ability to manage illness. Not least among them are the emotions that are an integral part of daily existence, and the sense of self that is constructed during the course of a chronic illness. These emotions, and the definitions of self embodied within the illness experience, are produced in ongoing social interactions. For the immigrant woman, the difficulties in living with a chronic illness are exacerbated by the experience of uprooting from her homeland and resettling in a new country. She must deal with her marginality, social isolation and alienation in a foreign culture. The feeling of being devalued arises not only from the chronic illness experience, but also from the definition of self that is constructed in dealing with the migration experience. The implications that this research study has for the profession of nursing are discussed.     

Midlife women's experiences living with heart disease

The purpose of this paper is to report results from a qualitative field study of 15 women with heart disease. The study was conducted over a two-year period in a number of clinical settings to document women's subjective experiences after angioplasty or cardiac surgery. The phenomena of interest were participants' perceptions of their health, the impact cardiac illness was having on their lives, lifestyle changes they had engaged in since diagnosis, and how they felt about having heart disease. Qualitative content analysis was applied to field notes and in-depth interviews. The overall sense of living with heart disease for these midlife women was one of paradox. Implications of their contradictory experiences are discussed as they apply to nursing practice.     

Women''s Health and the Practice of Public Health Nurses in Northern British Columbia

This study explored women's health and the practice of public health nurses in northern British Columbia using a phenomenological methodology. Ten public health nurses in northern British Columbia were interviewed to determine their perspectives on their practice in the area of women's health. Findings reveal three central themes: women's health, public health nursing practice, and rural context. Several subthemes elaborate on the central themes. Women's health is described in terms of women's health needs, how women stay healthy in northern communities, and conditions that affect women's health. Public health nursing practice is described in terms of activities, strengths, conditions, and ways to strengthen practice. Definitions of rural context are provided and some of the benefits and challenges of living and working in northern communities are presented. Health promotion and illness and injury prevention needs of women are clearly evident in the findings. Public health nurses are well placed in the North to help women meet their health care needs. However, further attention to women's health needs and the expansion of public health nursing services would facilitate improved health for women who live in isolated northern settings. In addition, further research is needed to explicate women's health and public health nursing practice in isolated northern settings in Canada.     

Women's experiences of 'being diagnosed' with a long-term illness

AIMS: In this paper we share women's storied accounts of 'being diagnosed' with a long-term illness. The purpose of the paper is to raise awareness of health professionals that receiving a medical diagnosis is a potentially calamitous event, challenging self-identity. BACKGROUND: The three authors were involved in three separate inquiries which explored women's experiences of living with illness. The authors realized that 'being diagnosed' was a common memorable event for the women across the inquiries. The literature around receiving a diagnosis was scarce. DESIGN: This paper is the result of secondary analysis of data from three different projects where we researched women living with long-term illness. In this paper, we focus on the experience of 'being diagnosed' as we share and show women's perceptions of receiving a medical diagnosis. FINDINGS: Receiving a medical diagnosis of a long-term illness was a memorable event in the women's lives. Many women felt alone with their illness, often without adequate information to find meaning in the relationship between their familiar self and their new identity as a woman living with illness. They felt vulnerable and lost as they tried to understand the meanings and consequences that the diagnosis held for their present and their future. Informational needs may be specific and individual. For many, receipt of a diagnostic label was momentous and should not be underestimated, despite the initial feeling of chaos, many women felt validated. CONCLUSION: Receiving a medical diagnosis is one event where health care professionals could be on standby. It is important to take the woman's articulation of the event seriously. Open, genuine communication, with willingness on behalf of the health professional to listen would be affirming for women who are coming to terms with the diagnosis of a chronic illness.     

Transcendence and transformation in the life patterns of women living with rheumatoid arthritis

Considering personal life stories as the context for health transitions can enhance understanding of what is meaningful in living with chronic illness. Informed by Margaret Newman's theory of Health as Expanding Consciousness, this interpretive study described the life patterns of three women with rheumatoid arthritis as a process of expanding consciousness. The women's stories revealed transcendence of self-boundaries and personal transformation as new ways of living, including "simple pleasures" and "being positive." Through understanding life patterns within caring nursing partnerships, transitions in an entire life story can be appreciated as complex processes involving transcendence and transformation.     

Wellness Profile of Midlife Women with a Chronic Illness

Among issues important to women's health are their wellness profiles including indicators such as activity level, weight status, breakfast and snacking patterns, health status perceptions, and alcohol and tobacco use. This is particularly true for midlife women with a long-term illness. The purpose of this study is to identify the wellness profile of a group of midlife women with multiple sclerosis (MS), and to compare their life-style indicators with national health statistics. Overall, the women in the study group indicated a lower perception of their health status and were less active. However, the women in this study group demonstrated healthier body weights, used less tobacco and alcohol, had better breakfast patterns, and comparable snacking patterns, indicating that may be more attuned to their bodies than women without chronic illnesses. Identifying women's wellness profiles can assist practitioners in addressing the issues of health for women managing a long-term illness.     

Depression: the 'invisible grey fog' influencing the midlife health of African Canadian women

Depression is a topic that is often avoided in discussions among Black women for a myriad of reasons. The purpose of this study was to investigate the midlife health of Black women living in the province of Nova Scotia, Canada. This paper will present one of the key findings of this research; midlife depression. It will examine the factors associated with depression among mid-life African Canadian women and how these women deal with depression. A triangulation of qualitative and quantitative methods guided by the principles of participatory action research (PAR) was used in the study. Data collection methods included 50 in-depth interviews of mid-life African Canadian women aged 40-65, focus groups, and workshops as well as the CES-D structured instrument. Purposive sampling method was the primary recruitment strategy and 113 people participated in the study. Although the women rarely openly discussed depression, they described depression as emotional feelings that range from "feeling blue" to being clinically depressed. Women viewed midlife depression as the consequence of a complex set of circumstances and stressors that they face. At midlife, Black women frequently recognize the importance of greater self-care and the need to pay more attention to their health, but they are reluctant to do so because they have to be "strong" in order to deal with their daily experiences of racism. Racism, among other things, leads to accumulated stress and undermines Black women's ability to cope and make healthy life choices. This signifies the implications of these research findings for clinical practice.     

Older women's experience of living with chronic leg ulceration

In this study the authors sought to gain insight into the lives of older women, to focus on the experience of living with leg ulcers and to explore women's views by talking to them about their experiences. Twelve English-speaking women aged over 70 years who had experienced leg ulceration for 3 years or more were interviewed. Analysis of the interview text revealed two overarching themes: (i) gaining and maintaining control over vulnerable limb(s); and (ii) lifestyle consequences of chronic leg ulceration and impaired mobility. These themes contained several subthemes including: (i) nagging pain; (ii) self-expertise and infection; (iii) leakage, smell and embarrassment; (iv) fighting for skin and limb integrity; (v) wearing non-preferred apparel; (vi) loneliness; and (vii) coping, determination and hope. The findings of this research show that elderly women who live with leg ulcers experience multiple consequences. While the everyday problems of living with an unhealed would are addressed by the community nurse, other more subtle consequences may be overlooked. Recognition of the complex and sometimes hidden concerns of these women could help to avert the sense of helplessness which currently exists.     

Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia

BACKGROUND: People with chronic illnesses often suffer from identity-loss. Empirical research concerning patients with chronic fatigue syndrome (CFS) or fibromyalgia has not, however, adequately addressed the consequences of these illnesses for identity. AIM: The aim of this article is to describe how women with CFS and fibromyalgia create new concepts of identity after the onset of illness, and how they come to terms with their newly arisen identities. I aim to illuminate the biographical work done by these individuals, which includes a re-evaluation of their former identity and life. This process is illustrated by the following themes: An earlier identity partly lost and Coming to terms with a new identity. METHOD: The study is based on interviews with 25 women in Sweden, 12 with the diagnosis of CFS and 13 diagnosed with fibromyalgia. A grounded theory orientated approach was used when collecting and analysing the data. FINDINGS: The main findings are that: (1) the illnesses can involve a radical disruption in the women's biography that has profound consequences for their identity, particularly in relation to work and social life, (2) biographical disruptions are partial rather than total, calling for different degrees of identity transformation, (3) many of the women also experience illness gains in relation to the new identity. CONCLUSIONS: Thus, the biographical disruption and illness experience comprised both losses and illness gains that had consequences for identity.     

Feminist conceptualizations of women's madness: a review of the literature

BACKGROUND: Gender is one aspect of an individual's identity that has been widely debated and discussed in relation to many different aspects of social life. The literature review explores how gender stereotypes affect women and their experience of mental illness. The aim is to demonstrate how a feminist perspective provides a useful lens through which women's experience of mental illness can be viewed. METHODS: The papers were identified by a computerized search of the CINAHL, Medline, BIDS ISI and Mental Health Nursing Collection databases and a hand search. All papers were screened and subjected to critical review. RESULTS: A theoretical framework was developed that reflected two key themes to emerge from the feminist literature on women and mental illness, namely psychiatry as a method of socially controlling women and the medicalization of women's unhappiness. In addition the complexities and contradictions in the feminist arguments are highlighted. CONCLUSION: The paper concludes by considering the implications of the issues raised for nursing practice by drawing attention to the current debates on the need to focus on gender relations rather than just on women's issues.     

The 2014 National Nursing Research Roundtable: The science of caregiving

The National Nursing Research Roundtable (NNRR) meets annually to provide an opportunity for the leaders of nursing organizations with a research mission to discuss and disseminate research findings to improve health outcomes. In 2014, the NNRR addressed the science of caregiving, a topic of increasing importance given that more people are living with chronic conditions and that managing chronic illness is shifting from providers to individuals, their families, and the communities where they live. The NNRR consisted of scientific presentations in which leading researchers discussed the latest advances in caregiving science across the life span and breakout sessions where specific questions were discussed. The questions focused on the policy and practice implications of caregiving science and provided an opportunity for nursing leaders to discuss ways to advance caregiving science. The nursing community is ideally positioned to design and test caregiver health interventions and to implement these interventions in clinical and community settings.     

Health within illness: experiences of chronically ill/disabled people

The concept of health within illness is beginning to gain recognition in nursing However, there has been little research to explore and describe this phenomenon The results of a recent study investigating the meaning of the experience of feeling healthy for people living with a chronic illness and/or disability are presented An interpretive phenomenological study was undertaken with eight participants living with a variety of different chronic conditions The results provide a rich mosaic of themes describing the participants' health experiences These themes include (a) honouring the self, (b) seeking and connecting with others, (c) creating opportunities, (d) celebrating life, (e) transcending the self, and (f) acquiring a state of grace The significance of these results is that they provide for a reconceptualization of health and illness Such a reconceptualization calls for a transformation in nursing care, from a problem focus and a deficit perspective, to one which focuses on the client's capacity and the promotion of health and healing     

Women's experiences of bulimia nervosa

AIM: This paper reports a study to interpret and understand bulimia nervosa as women experience it. BACKGROUND: Research into bulimia nervosa has focused on prevalence rates, health complications, comorbidity, neurochemical dysregulation, and cultural influences. Despite a multitude of investigations, little published research appraised bulimic women's personal experiences and understanding of this disorder. Such an understanding would assist health care professionals in providing sensitive, empathetic care. METHOD: The principles of Heideggerian phenomenology guided the study. Participants were 13 actively bulimic women, aged 18-36 years, with lengths of illness from 1 to 23 years. Data were obtained through interviews, personal diaries, and demographic questionnaires. FINDINGS: Participants' narratives revealed four themes that characterized the experience of living with bulimia: isolating self, living in fear, being at war with the mind, and pacifying the brain. The practices bulimic women engage in are carried out in secret, and hence participants experienced isolation. Binge eating and self-induced vomiting are considered abnormal behaviours; therefore, participants believed that they were subjected to negative public perceptions, which led to the experience of living in fear. The women feared being judged if others knew about the disorder. Several feared living without bulimia because it had become a significant part of their identity. In addition, these women were terrified of gaining weight or becoming fat. They experienced an internal struggle with the mind. In order to pacify the inner voice, many fed the compulsion to eat, and this resulted in guilt. The women subsequently balanced the experience by getting rid of fullness and erasing guilt, which was primarily achieved through self-induced vomiting. CONCLUSIONS: Understanding the experience of bulimia for women who suffer from this disorder is important. Bulimia often presents as a chronic and potentially lifelong health issue. Awareness of bulimic women's perspectives could promote a comprehensive appreciation of bulimia, its aetiology, and directions for treatment alternatives.     

The experience of waiting and life during breast cancer follow-up

Much research exists on quality of life issues with breast cancer survivors. However, there has been little done on the waiting experience itself, and on the experience of follow-up from the women's perspective. Women who have been diagnosed and treated for breast cancer live with the condition for a minimum of 5 years, waiting for the next medical intervention; waiting for the next battery of tests; waiting for the next physician check-up. Throughout most of these years they may feel healthy, but they experience visits to cancer clinics, medical testing, and physician interactions. Women's accounts of their experiences of waiting and life during follow-up for breast cancer has not been the focus of research on the quality of life of breast cancer survivors. In particular research that uses a qualitative approach, in which women recount their experiences in their own language, has been missing. This study used a phenomenological approach, telling the stories of waiting and life throughout follow-up of nine women. The women's experiences are captured in four themes: life-changing; a sense of belonging; uncertainty; needing to know.