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.     

Adaptation to chronic illness. Analysis of nursing research

The review of reported nursing research on chronic illness has many implications for nursing practice. Results of these studies may be implemented in many of the interventions provided for chronically ill patients. There needs to be collaboration between the researcher and practitioner to share knowledge of interventions that promote adaptation to chronic illness, and to investigate new and innovative therapies. Another contribution to nursing practice is the psychosocial variables that affect adaptation of chronically ill patients. Depending on the health problem and practice setting, nurses need to identify which variable may increase the effectiveness of their interventions and how they can best promote adaptation. Particularly noticeable was the absence of studies on the prevention of chronic illness. Although there is documented evidence of the relationship between stress and illness, and predictions that future environments will be even more stressful, a needed area for nursing research is prevention of chronic health problems. Areas such as stress management, health promotion, relaxation training, and behavior modification are timely subjects for nurses to research for prevention of these problems. There are merits to studying a particular chronic health problem in depth and in studying the commonalities among several chronic illnesses. With knowledge of both the physical and psychosocial, nurses are in an ideal position to contribute to the knowledge base of human responses to chronic illnesses.     

Social support in cyberspace: the next generation

The goal of the Women to Women Project (WTW) is to help chronically ill rural women to adapt to their long-term illnesses by providing support and health information via computers. The specific aims are to (1) assess the impact of the computer-based intervention on psychosocial health (self-efficacy, self-esteem, empowerment, social support, stress, depression, loneliness), computer literacy skills, and health knowledge; and (2) analyze the computer exchanges for insights to explicate the complex process of adapting to chronic illness within the rural context. Participants are 240 rural women with a chronic illness who reside in rural areas of Montana, Idaho, Wyoming, North Dakota, and South Dakota. Preliminary data analysis suggests that the intervention is helping to improve the women's ability to adapt to their chronic illnesses. The WTW intervention model has the potential to effectively connect these women in a program of support and education.     

School nurse case management for children with chronic illness: health, academic, and quality of life outcomes

More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with asthma, diabetes, severe allergies, seizures, or sickle-cell anemia in 5 different school districts who were provided case management by school nurses. The children ranged in age from 5 to 19 years. At the end of the school year, children experienced an improvement in quality of life and gained skills and knowledge to manage their illness more effectively. Classroom participation, grades, and participation in extracurricular activities also increased for many children. The study provides evidence of the positive impact school nurses have on children with chronic illness and suggests ways they can measure the outcomes of their interventions.     

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.     

An online approach to providing chronic illness self-management information

The purpose of this article was to describe an online approach to providing chronic illness self-management information to rural women with chronic illness. To self-manage chronic illness, individuals require information about their conditions. For those in rural areas who have limited access to health services, computer-based interventions are a means of providing this information. Participants were randomly assigned either to an 11-week computer intervention in which they completed nine online self-study health teaching units related to self-management, or to a control group. The health teaching units were positively rated as being helpful in managing their chronic illnesses, with scores ranging from 4.09 to 4.84 on a six-point scale. Perceptions of computer skills increased significantly for the intervention group, with no increase in the control group. Computer-based programs can be an effective approach to providing health information to rural women with chronic conditions that will assist them in their self-management efforts.     

老年常见慢性病病人心理反应的分析

目的　探讨老年慢性病人对疾病的情绪反应 ,以及影响这些情绪反应的因素。方法　对 5 0例住院老年慢性病人进行了访问。访问围绕病人的人口社会学资料、健康自我评价、日常生活自理能力、社会支持系统、负性生活事件、经济负担 ,以及如何应付由慢性病引起的压力等。结果　病人典型反应包括焦虑、恐惧、无用感、抑郁。结论　病人能否成功地适应慢性病取决于他们是否得到来自家庭、其他病人及医务人员的支持     

A conceptual framework for studying child adaptation to Type 1 diabetes

Understanding the challenges of managing a chronic illness, nurses provide a key component of care to patients and families who struggle daily with the demands of self-management and the balance of daily life challenges. Even though nurses empathize with the issues of chronic illness management, the complexity of managing such clients has not been articulated in a theoretical or research base. Hence, the nursing process related to facilitating adaptation to childhood chronic illness remains in a formative stage. My article presents a conceptual framework that can guide the study of children and families coping with children with Type 1 diabetes. The framework also may prove useful for other chronic illnesses.     

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.     

The use of algorithms in assessing and managing persistent pain in older adults

OVERVIEW: As the U.S. population ages, nurses will care for increasing numbers of older adults, most of whom suffer from at least one chronic illness. The persistent pain associated with many chronic illnesses can have detrimental effects on patients' functioning and quality of life. Algorithms developed from evidence-based clinical practice guidelines are tools that can facilitate the application of research to practice. This article introduces readers to the use of algorithms in guiding the assessment and management of persistent pain in older adults, and provides an illustrative case study.     

Gender-related concerns of rural women with severe and persistent mental illnesses

This study used focus groups to investigate the perceptions of rural women with severe and persistent mental illness (SPMI) about their gender-related health concerns. In a series of five focus groups conducted with 16 women at rural psychosocial clubhouses, women with SPMI discussed many gender-related issues, including unresolved grief over loss of children, isolation from family members, lack of sexual partners, diminished sexuality, and bodily changes secondary to medication side-effects. Women with mental illness felt like their roles as women was superseded by their role as mentally ill individuals. Rural women with SPMI have unmet needs for women's health. Psychiatric nurses have the optimal background for addressing gender-related concerns of rural women with SPMI.     

An evaluation of an online intervention to provide social support and health education

Managing chronic illness in the isolation of rural environments is challenging for women who lack access to personal sources of social support and health information. The Women to Women project was designed to provide chronically ill rural women access to support and health information via electronic means. This article reports on the acquisition of computer skills, the perceptions of importance of various aspects of the intervention, and an assessment of women's overall satisfaction with participation in the research project. Findings indicate that the women's self-ratings of computer skills improved significantly over the 22-week intervention and that highly interactive features of the project were rated as most important by the participants. Overall, women found the program beneficial in assisting them to better manage their chronic illness.     

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.     

A concept analysis of health-related quality of life in young people with chronic illness

Aims. To critique existing concept analyses of quality of life and develop a definition applicable for young people with chronic illness. Background. Quality of life is a commonly used phrase but there is no universal definition. Five perspectives of quality of life have been proposed: sociological, economic, psychological, philosophical and ethical. However, health has emerged as an important but distinct perspective. The nursing profession has made a substantial contribution to the understanding of the interrelationship of health and quality of life. Design. Literature review. Methods. A search on electronic databases to April 2007 was made using the terms ‘quality of life’ and ‘concept analysis’. Papers were included in the review if they used a recognised method of concept analysis and were conducted by nurses. A new concept analysis was then performed specifically focusing on young people’s experiences of living with chronic illness. Results. Eight concept analyses were identified, all of which had limitations. All the concept analyses were based on adult literature so did not take into consideration developmental changes, language level, or young people’s construction of health and illness. The new concept analysis found that young people living with chronic illness generally view themselves and their lives in the same way as their healthy peers. While their aspirations are often constrained by illness and treatment the relationship between illness and life cannot be seen in isolation of development. Conclusion. Previous definitions of quality of life derived from concept analyses with adult populations do not adequately represent the experience of young people with chronic illnesses, but can be made more specific by incorporating important attributes such as developmental stage and the importance of peer group and family. Relevance to clinical practice. The current analysis provides a clear definition of quality of life from the health perspective which is specific for use with young people with chronic illness to guide practice and research.     

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.     

Managing asthma in the workplace: an overview for occupational health nurses.

Occupational health nurses are the ideal members of the workplace team to initiate disease management programs for chronic illnesses; asthma is just one disease for which occupational health nurses can make a difference. Employees win by improving their health and quality of life, having better control of a chronic health condition, simply feeling better, and using time off for vacation rather than sick days. Employers win by having healthier employees who are absent less often and more productive at work, and who cost the company less for their health care. Occupational health nurses are the key link in this cost saving, productivity enhancing chain. Being proactive in this disease management role clearly establishes occupational health nurses' value in their organization.     

Comparison of health-related quality of life among 10- to 12-year-old children with chronic illnesses and healthy children: the parents' perspective.

The purpose of this study was to evaluate mothers' and fathers' perception of their child's health-related quality of life (HRQOL) among 10- to 12-year-old Icelandic children with or without chronic health condition or illness. A total of 912 Icelandic parents (510 mothers and 402 fathers) and 480 children (209 boys and 271 girls) participated in the study. The Icelandic fathers of children who visited the school nurse over a period of 1 week perceived HRQOL of their children to be significantly lower than the mothers. A gender difference was found between the parents; mothers perceived their children to have significantly higher school functioning than fathers. Both mothers and fathers of children with chronic health condition/illness perceived their children to have significantly lower HRQOL than did the parents of children without a chronic health condition. The findings underline the importance for school nurses to develop and test interventions for school-age children with chronic health conditions or illnesses.     

I'm not a "basabasa" woman: an explanatory model of HIV illness in Ghanaian women

Ghana continues to experience an increase in the rate of infection with the human immunodeficiency virus (HIV), with more new infections occurring in women than in men. Prevailing views of health and illness, including indigenous knowledge and traditional beliefs, are an important component of the broad context of disease transmission. Participatory action research was used to explore the explanatory model of HIV illness of 31 seropositive Ghanaian women. Also interviewed were 5 HIV seropositive men, 2 traditional healers, 8 nurses, and 10 professionals, individually and in focus groups, to reflect on the women's comments and the themes emerging from the data. In this article, the women's beliefs about HIV illness will be discussed and their views about the etiology, pathophysiology, symptomology, course of illness, and methods of treatment for their illness will be described. Findings illustrate areas of divergence and convergence between traditional and biomedical explanations of, and treatment for, HIV illness. The necessity for health professionals, particularly nurses, to understand individual and community perceptions about HIV illness is highlighted by the study findings.