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.     

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.     

Focus group study of endometriosis: struggle,loss and the medical merry-go-round

Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well-being.     

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.     

Living with chronic heart failure: a review of qualitative studies of older people

Title. Living with chronic heart failure: a review of qualitative studies of older people Aim. This paper is a report of a systematic review of qualitative studies of how older people live with chronic heart failure. Background. Chronic heart failure is a global epidemic mainly affecting an ageing population. Understanding how older people live with this disease is important to help promote their adjustment to the distressing illness experience. Data sources. Eligible studies published in 1997–2007 were identified from several databases (Medline, CINAHL, PsycINFO and Sociological Abstracts). A manual search was conducted of bibliographies of the identified studies and relevant journals. Review methods. Two researchers independently reviewed the studies and extracted the data. Key concepts from the papers were compared for similarities and differences. The transactional model of stress was used to guide data synthesis. Findings. Fourteen qualitative studies were identified. Most described the illness experiences of older people with chronic heart failure and associated coping strategies. There was some emerging work exploring the adjustment process. The findings indicated that living with chronic heart failure was characterized by distressing symptoms, compromised physical functioning, feelings of powerlessness and hopelessness, and social and role dysfunction. There were gender differences in the way the disease was conceived. Adjustment required patients to make sense of the illness experience, accept the prognosis, and get on with living with the condition. Conclusion. Empowering older people to manage chronic heart failure, instilling hope and bolstering support system are means of promoting successful adjustment to the disease. Further research needs to explore the cultural differences in the adjustment process.     

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review

BACKGROUND: Advances in medical science and improved lifestyles have reduced mortality rates in Australia and most western countries. This has resulted in an ageing population with a concomitant growth in the number of people who are living with chronic illnesses. Indeed a significant number of younger people experience more than one chronic illness. Large numbers of these may require repeated admissions to hospital for acute or episodic care that is superimposed upon the needs of their chronic conditions. AIM: To explore the issues that circumscribe the complexities of caring for people with concurrent chronic illnesses, or comorbidities, in the acute care setting and postdischarge. METHODS: A literature review to examine the issues that impact upon the provision of comprehensive care to patients with comorbidities in the acute care setting and postdischarge. FINDINGS: Few studies have investigated this subject. From an Australian perspective, it is evident that the structure of the current health care environment has made it difficult to meet the needs of patients with comorbidities in the acute care setting and postdischarge. This is of major concern for nurses attempting to provide comprehensive care to an increasingly prevalent group of chronically ill people. CONCLUSION: Further research is necessary to explore how episodic care is integrated into the on-going management of patients with comorbidities and how nurse clinicians can better use an episode of acute illness as an opportunity to review their overall management.     

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.     

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.     

Adolescents' perception of living with end stage renal disease

BACKGROUND: End stage renal disease (ESRD) is a serious chronic condition, requiring life-long treatment and management to survive. It is unclear how the unique developmental needs of adolescents influence their ability to maintain the complex medical treatment regimen associated with ESRD. PURPOSE: The purpose of this study was to explore the perception of adolescents living with ESRD. Ascertaining the subjective perspectives of the adolescent provides insight into the effects of the chronic condition on their development and well-being. METHOD: Q-methodology was used to assess the adolescent's perception of living with ESRD. Thirty-five adolescents, 13 to 18 years, who were on renal dialysis or had received a renal transplant served as participants. FINDINGS: The results of the analysis identified four significant factors. The factors represented four distinct perspectives held by these adolescents living with ESRD: (a) normalization, (b) illness intrusion: barrier to normalcy; (c) illness management: parent-focused; and (d) illness management: self-focused. CONCLUSION: Overall, the majority of the adolescents in this study held a more positive perspective of living with ESRD than what has been described previously in the literature. The findings of this exploratory study provide direction for future research and nurses in practice.     

Living with Continuous Muscular Pain—Patient Perspectives

The purpose of the present study was to focus on the patient perspectives of living with chronic muscular pain, and to identify factors that can explain and give further understanding of how the condition influences everyday life. Forty women with fibromyalgia, living in two different cultural, health care and social security settings, Sweden and the USA, were interviewed, using a semi-structured format. Three preliminary typologies are suggested for further studies: Encounters, Consequences, and Strategies. The study is presented in two articles: Part I: Encounters and consequences, Part II: Strategies for daily life. This first article shows that the contradiction between the patients' perception of illness and the lack of objective findings is stressful. The women feel rejected, misunderstood, and disbelieved, which prevents them from dealing with their situation constructively. Long investigation periods provoke anxiety, and confirmation of the diagnosis is a relief. Daily routines are disrupted, conflicts between life roles lead to additional stress and the women experience loss of ability to perform valued activities, lack of physical fitness and loss of future opportunities. Patients need early and adequate information and the consequences of the condition must be acknowledged and taken into consideration if secondary economic and psychosocial consequences are to be minimized.     

Keeping it together: how women use the biomedical explanatory model to manage the stigma of depression

Although considerable research has been conducted on women who are depressed, the actual experiences and voices of women have not been central to this research. Therefore little is known about how women make sense of depression as they live with and manage it in their daily lives. Our purposes in doing this study were to (1) examine how women experience and manage depression and treatment, and (2) investigate the core components of women's explanatory models of depression (including beliefs about etiology, onset of symptoms, pathophysiology, course of illness, and treatment needs). We interviewed 43 women living in a small city in Western Canada who had sought treatment within the previous five years. Data were analyzed using the constant comparison method of grounded theory. In this paper we will focus on the core concept, Keeping it Together, and its three supporting categories, (1) Taking Up a Biomedical Explanation for Depression, (2) Using the Biomedical Explanatory Model (BEM) to Manage the Stigma of Depression, and (3) The Inadvertent Effects of Adopting a BEM.     

KEEPING IT TOGETHER: HOW WOMEN USE THE BIOMEDICAL EXPLANATORY MODEL TO MANAGE THE STIGMA OF DEPRESSION

Although considerable research has been conducted on women who are depressed, the actual experiences and voices of women have not been central to this research. Therefore little is known about how women make sense of depression as they live with and manage it in their daily lives. Our purposes in doing this study were to (1) examine how women experience and manage depression and treatment, and (2) investigate the core components of women's explanatory models of depression (including beliefs about etiology, onset of symptoms, pathophysiology, course of illness, and treatment needs). We interviewed 43 women living in a small city in Western Canada who had sought treatment within the previous five years. Data were analyzed using the constant comparison method of grounded theory. In this paper we will focus on the core concept, Keeping it Together, and its three supporting categories, (1) Taking Up a Biomedical Explanation for Depression, (2) Using the Biomedical Explanatory Model (BEM) to Manage the Stigma of Depression, and (3) The Inadvertent Effects of Adopting a BEM.     

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.     

Older Women’s Experience Of Everyday Life In Old Age: Past,Present And Future

Abstract

Aims: To explore how older Norwegian women living at home experience ageing, and how their everyday life has been influenced by their encounters with the challenges of life. Methods: A qualitative design, interviewing ten women age 90 or older, was employed. Results: The overall theme of the findings is how everyday life in old age is influenced by past, present and future. The subcategories focus on (a) changes in daily life, (b) giving an account of life as it is, (c) various perceptions of experienced loss, and finally, (d) thoughts about the future. Conclusions: Older women need the opportunity to reflect upon their past, present and future existence to have a good everyday life in old age. Our findings might be important in shaping health promotion interventions for older people.     

Treatment adherence of youth and young adults with and without a chronic illness

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational study was undertaken to compare the psychosocial functioning of young people, with and without chronic illness, aged between 12 and 24 years. Subjects were recruited from a metropolitan teaching hospital. Group 1 included 44 young people with chronic illness; Group 2 included 41 young people without chronic illness. Both groups were divided on the basis of age: younger (12-18 years, n = 24); older (19-24 years, n = 61) and sex (female = 43; male = 42). Subjects completed the Achenbach self-report questionnaire as a measure of psychosocial functioning, and a second questionnaire constructed for this study to explore treatment adherence. Psychosocial functioning scores were found to be similar on the majority of subscales. Young women with chronic illness were, however, found to have significantly higher internalizing scores than young women without chronic illness. A significant negative relationship was found for the chronic illness group between internalizing scores and treatment adherence. The findings highlight potential areas of difficulty in psychosocial functioning of some young people with chronic illness. They also suggest the existence of a subgroup of young people with chronic illness who experience more problems than their peers. More research is needed to generate evidence about this possible subgroup to determine predictors of psychosocial functioning and test the timing and efficacy of psychosocial interventions.     

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 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.