The quest for ordinariness: transition experienced by midlife women living with chronic illness

AIMS: This paper reports the findings of research that aimed to elucidate the meaning of midlife women's experiences of living with chronic illness. BACKGROUND: A lack of awareness by health professionals of the context in which women must live with chronic illness often results in women feeling overwhelmed, alienated and without voice within the delivery of health care. This inquiry privileged women's voices. DESIGN: The construct of 'transition' in chronic illness experience evolved from this collaborative and participatory research with midlife women living with adult onset chronic illness. Over a 1-year timeframe, 81 women were asked to tell their stories of living with a chronic illness. These correspondence data were thematically analysed to provide storied accounts. Guided by feminist principles, women were empowered through research processes and have actively participated in the development of the transition construct. FINDINGS: The research revealed that when women are first confronted with a chronic illness they appear to move through a complex trajectory that involves an 'extraordinary' phase of turmoil and distress; however, they may then make the transition toward an 'ordinary' phase that involves incorporating chronic illness into their lives. Transitions in chronic illness experience involve movement from extraordinariness to ordinariness and sometimes back again and were found to be processes that are nonlinear, sometimes cyclical and potentially recurring throughout a woman's life. Four major constructs emerged from women's narratives: How quickly life changes; extraordinariness: confronting life with illness; The illness experience as transforming and ordinariness: reconstructing life with illness. CONCLUSION: Nurses are in a position where they may make a difference to women who live with chronic illness. Understanding illness transitions offers a framework that will enable nurses to move beyond the bio-medically orientated concepts of nursing practice, towards a holistic approach to the provision of nursing care.     

Treading lightly: spirituality issues in mental health nursing

ABSTRACT: Spirituality has been recognized as an important part of nursing practice since its early beginnings. However, debate continues about whether and how nurses and other mental health professionals should include spirituality within their daily work. This paper aims to contribute to the discussion of spirituality within mental health nursing, through considering findings from a Heideggerian phenomenological study conducted with six people with mental illness living in regional Australia. This study aimed to provide a greater understanding of the phenomenon of spirituality by answering a primary research question, ‘What does spirituality mean for people with a mental illness?’ Participants were interviewed and data analysed using an iterative approach. Findings emerged through multiple readings and meanings were gradually constructed from the data into themes. The themes describe that spirituality is experienced uniquely for the participants, and that spirituality became vitally important to them when they became mentally unwell. In addition, issues of interest to mental health nurses were raised but not completely addressed by the study. The issues relate to potential interactions about spirituality between nurses and their patients. Although participants wanted to discuss their experiences of spirituality with others, they raised concerns about whether their mental health care providers would be accepting of their beliefs. Spirituality was deemed to be a highly individual phenomenon; it could be experienced as a journey and it was life‐sustaining. For these reasons, it is proposed that mental health professionals must be prepared to discuss patients’ spiritual needs in the context of their health concerns.     

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.     

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.     

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.     

God in control: women's perspectives on managing HIV infection

Women with HIV face a number of challenges in living with this chronic, life-threatening illness: economic, physical, social, and emotional. When discussing their illness the importance these women place on having a strong spiritual life is a consistent theme. In this study, women were asked to describe and explain what spirituality meant to them and how they used it in living with HIV. The results indicate that, in opposition to what some contemporary providers fear HIV-positive women use their spiritual life to enhance the care prescribed by providers, rather than using their faith to avoid mainstream sources of care. In addition, women related the importance of spirituality in dealing with everyday life. Knowledgeable providers can incorporate discussions of spirituality in their care of women with HIV and, in the process, potentially improve the therapeutic results of their HIV-specific care.     

Spirituality and Chronic Illness

Purpose: To present a comprehensive overview of spirituality and identify strategies to support the spiritual dimensions of nursing care for people with chronic illness, focusing specifically on HIV-related illness and AIDS.
Significance and Scope: The AIDS crisis has brought new emphasis to the need to develop therapeutic interventions to support the coping resources of people living and dying with chronic illness. Conceptual, theoretical, and empirical knowledge related to spirituality was reviewed, integrated, and interpreted within the context of nursing care for this population, emphasizing the spiritual needs of people with HIV-related illness and AIDS.
Conclusions and Implications: Spirituality has evolved beyond religious considerations to encompass multidimensional and existential perspectives that are integral to maintaining well-being for the chronically ill. A deeper understanding of spirituality enhances the potential for nurses to identify spiritual needs and incorporate spiritual caring into practice.     

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.     

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.     

Women in the 'developing world' and their perceptions of health: an area for examination by the nurse from the 'developed world'

The aim of this paper is to consider how nurses from the 'developed world', in this instance Great Britain, may assist women from the 'developing world', specifically from Pakistan, to meet their and others' health needs To explore nurses' understanding of women from Pakistan and its translation into delivery of nursing care, a number of topics require exploration These include culture, health, origins of Pakistani women who have settled in Britain, clarification of the geographical area under discussion and a brief introduction to two studies that have investigated the health beliefs of communities in Pakistan, in particular the health beliefs of women Appreciation of studies that illustrate women's beliefs about health can provide a basis upon which further examination can take place Ideas can then be assimilated into a framework for nursing care centred around anthropological and holistic approaches to women from Pakistan The outcome of this should be an examination of women's beliefs within a cultural context in relation to nursing care and management     

Using a women''s health perspective to guide decisions made in quantitative research

Women's health, as an emerging area of nursing scholarship, is based on a set of philosophical assumptions. These assumptions are: (i) women's health can best be understood by examining women's lived experiences within a specific context; (ii) gender bias must be avoided; (iii) the focus should be on health rather than illness; and (iv) non-exploitative relationships should be established between the researcher and research participants. Assumptions from a women's health perspective can be used by researchers to guide decisions made in conducting research with women. In order to strengthen the correspondent validity (i.e., the fit between theory and methods), research decisions need to be consistent with the philosophical assumptions of the inquiry. Examples of quantitative research decisions influenced by a women's health perspective are illustrated using a study of binge eating in women.     

The nurse as mediator of pollution: the influence of the nursing role on the socialization of disease and illness

Nursing plays an influential role in the socialization of disease and illness, that is, how they become integrated within the social context of people living together in the community of human society Generally, it may be argued that physicians adopt the ideology that disease is fixed within a framework of a medical model, which frequently ignores how an individual feels when sick and what effects the sickness will have on an individual's perception of everyday life Nurses, on the other hand, adopt a more flexible approach in their care, which is based on recognizing that the body responds dynamically during the experience of sickness This paper sets out to explore why nursing has evolved with the concept of an illness model as opposed to a disease model, which so often underpins the approach adopted by physicians Traditionally, the care of the young, sick and infirm was delegated to women and set within the realms of domesticity Today, as in the past, many aspects of the nursing role involve polluting aspects that result from sickness These are skilfully, subtly and tacitly managed by nurses in order to protect themselves and create an environment of permission in which the sufferer's sickness is contained and managed Over the past couple of decades, innovations in nursing have recognized the effects of disease and illness on the individual within their own social context, and attempts have been made through the evolvement of the nursing process to focus on an individual's sickness as a lived-body experience However, more recently, critics of the nursing process have claimed that, in essence, the nursing process has done nothing more than merely reproduce the original reductionalism that was previously encountered through a task-allocation approach to nursing     

Mastectomy, body image and therapeutic massage: a qualitative study of women''s experience

Despite the wealth of literature concerning the impact of breast loss on a woman's body image, sexual and psychological adjustment, there have been few studies within the medical and nursing literature directly quoting a woman's private perspective; how in her words she experiences her changed body. Furthermore, there is a lack of evidence-based interventions for addressing the problem of altered body image (ABI); healthcare professionals often feel at a loss in knowing how to help women cope (Hopwood & Maguire 1988). In this study in-depth interviews were undertaken to explore three women's experiences of breast loss with particular focus on body image issues; a second phase piloted a massage intervention as a means of helping them adjust to living with their changed body image. Listening to their experience, in combination with the therapeutic massage, allowed deep access and insight into the nature of the women's trauma. The experiences of the three women in this study suggest there may be a group of women whose needs are overlooked and who, despite their prosthesis and reassurances that they are disease-free, opt to conceal the problems they have in living with a changed image. The availability of a body-centred therapy might help with certain aspects of adjustment as revealed by this study.     

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.     

Living through gynaecological cancer: three typologies

Aims and objectives. The aim of this qualitative study is to highlight how women experienced living through gynaecological cancer. Background. The increasing number of long-term survivors after cancer has created a greater need for knowledge about how patients live through the illness. Design. A qualitative design, with a phenomenological-hermeneutical perspective, provided the framework for the study. Method. Thirty-two unstructured in-depth interviews with 16 women were conducted. Each woman was interviewed twice: one?year apart, and five and six?years after treatment, respectively. Stepwise meaning condensation was used to analyse the data. Results. Based on the women's first-hand stories about their experiences with cancer, we identified three typologies, describing different ways in which the women negotiated encountering and living through cancer. These typologies are the emotion- and relationship-oriented women, the activity-oriented women and the self-controlled women. Conclusions. There are substantial differences regarding how women process the experience of cancer. The findings add valuable knowledge about the impact cancer can have on women's lives and can be of help for nurses who support patients during treatment and follow-up. Relevance to clinical practice. Understanding different ways women can experience living through cancer is fundamental for the development and improvement of cancer care. Allowing time for the women to talk with nurses about their cancer experiences could be essential during treatment and follow-up. Nurses can support the women by listening to their stories, accepting their emotions and informing them in detail. The findings in this study imply that strengthening nurses' listening and conversational competence can be of importance for supporting patients after cancer. By building on the women's own stories, it might be possible to create a follow-up process that is individually tailored for each cancer patient.     

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.     

Strength and vulnerability: spirituality in abused American Muslim women's lives

The importance of spirituality for individuals coping with and recovering from trauma has been widely recognized. Despite this recognition, little information is available addressing the influence of spirituality on the abuse experiences of women surviving intimate partner violence (IPV). This paper begins to amend this gap in knowledge by examining the influence of spirituality on the abuse experiences of American Muslim women, a large and growing population. Findings from this qualitative study indicate that spirituality provided participants with an important means of coping with ongoing violence while in many instances also creating barriers to safety. These findings underscore the complex role spirituality may play as a source of both strength and vulnerability in American Muslim women's response to IPV.     

The essential elements of spirituality among rural Thai elders

The essential elements of spirituality among rural Thai elders The purpose of the study reported here was to understand and describe the essential elements of spirituality among rural Thai elders. The research question that guided the study was: How do rural Thai elders experience and describe spirituality in their daily lives? This question was explored through in‐depth, audio‐taped, face‐to‐face interviews with 12 rural Thai elders living in the Nakhorn Prathom Province in the central part of Thailand during the period from January to March 1998. Prior to implementing the study, approval to conduct this study was granted from the Institutional Review Broad of the University of Alabama at Birmingham. Through the process of hermeneutic phenomenological data analysis, three categories and nine themes emerged. The findings of the study provide a knowledge base for Thai nurses to explore and explain spirituality to enhance nursing science and provide holistic nursing care. Further research should be conducted throughout the health and illness continuum with all age groups and with individuals of different cultures and belief systems.     

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.     

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.