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.     

The nature of hope in hospitalized chronically ill patients

BACKGROUND: Hope as a universal human phenomenon has been studied from various perspectives often conceptualized as having a unified set of attributes. In this study however hope is viewed to be experienced by people in various patterns structured by different orientations and emphases depending upon their life circumstances. There is a paucity of studies in the literature examining patterns of hope experienced by people in chronic illness or in special life circumstances. OBJECTIVES: The aim of this study was to discover patterns of hope in hospitalized chronically ill patients and to identify the major threads that structure various patterns of hope experienced by them. DESIGN: Q-methodology, which is an approach designed to discover patterns in various subjective experiences, was used as the method for data collection and theory generation. Q-methodology involves five steps in its approach, the first two as the first phase and the last three as the second phase. The study was carried out at a general acute-care, tertiary hospital in a New England state in the US. The study obtained data from a convenient sample of 12 chronically ill patients and 16 oncology nurses for the first phase, and a different convenient sample of 20 chronically ill patients for the second phase. RESULTS AND CONCLUSIONS: Five patterns of subjective experiences of hope emerged as: (a) externalism orientation, (b) pragmatism orientation, (c) reality orientation, (d) future orientation, and (e) internalism orientation. This means that chronically ill patients experience hope in various ways by focusing on different dimensions of meaning, suggesting the conceptualization of hope as a unitary construct may not reflect people's experiences of hope accurately. The major implication of the study is to rethink ways to assess patients' hope in terms of pattern differences rather than in terms of quantity.     

A descriptive study of meaning of illness in chronic renal disease

AIM: To explore the subjective meaning of illness in a sample of renal patients. BACKGROUND: Patients' illness representations, such as the meaning they attach to illness, may affect their coping and adaptation. Improved understanding in this area may therefore benefit patient care. Meaning of illness has not previously been explored in renal disease. DESIGN AND METHODS: Cross-sectional survey (n=405) in a single regional renal unit in the North of England. Ethical approval was obtained and patients gave written consent. The instrument used was an eight-item schema, based on the work of Lipowski (1970, Psychiatry in Medicine 1, 91-102). Field notes regarding rationale for choice were recorded concurrently, then content analysed to enable identification of themes. The chi-square test (significance level P < 0.05) was used to analyse differences in selected meaning in older and younger patients; males and females; and patient groups (predialysis, haemodialysis and transplant). FINDINGS: 'Challenge' was selected by most patients (n=253, 62.5%), with similar results in all three patient groups. Slightly more older than younger patients selected 'challenge', although the difference was not statistically significant and older patients more commonly had a fatalistic interpretation of the option. More men selected 'challenge' than women. Those selecting 'challenge' and 'value' appeared to have a more positive outlook than other patients. CONCLUSIONS: Patients had identifiable meanings for their illness, and these may be associated with their response to renal disease. The schema appeared to be comprehensive, but is in need of further refinement. Consideration of the possible influence of social desirability is necessary.     

Hope: future imagined reality. The meaning of hope as described by a group of healthy Pentecostalists

Hope: future imagined reality. The meaning of hope as described by a group of healthy Pentecostalists ¶ A holistic health care approach involves body, mind and spirit. Religiosity, spirituality and hope, as a part of the spiritual dimension, are often linked to various health-related outcomes such as physical health, spiritual well-being and experienced meaning in life. A person's outlook on life and the experience of hope are essential issues in all health care. The purpose of this paper is to describe the meaning of hope as expressed by a group of healthy adult Pentecostalists ( n  = 15). Using narratives, the ultimate hope was described as life after death, the future imagined reality, promised by God. Hope was strengthened by reading the Bible and saying prayers, through experienced meetings with God and shared values. Hope was quite stable but sometimes God was experienced as being at a distance, which resulted in a sense of alienation. Hope unconnected to Christian belief was of no significant importance to the interviewees.     

Social and existential alienation experienced by people with long-term mental illness

The aim of this study was to explore how people suffering from long-term mental illness and who live in the community experience their daily lives. The study was based on an ethnographic framework involving participant observations with 23 individuals from two rehabilitation centres and interviews with six women and two men. The observational notes and interviews were recorded, transcribed into the data and analysed based on the phases of hermeneutic interpretation. The process consisted of identifying tentative interpretations that highlighted various impediments that prevent people with long-term mental illness from having an active life. The impediments can also be interpreted as a form of alienation, an interpersonal phenomenon and a consequence due to of the lack of social acceptance towards mental illness. The participants expressed concern about the future and lack of hope. Viewing themselves as being 'odd' is not a symptom of mental illness, but rather evidence of experiencing existential and social alienation not only as a consequence of other people's reactions but also their own negative attitudes towards mental illness and effects of their cognitive dysfunction.     

Achieving harmony with oneself: life with a chronic illness

This paper presents partial findings of a larger research project focusing on what it means to live with a chronic illness. Getting in harmony with oneself is a movement towards, and a form of, acceptance of the chronic suffering and disease. Some patients achieve this level of acceptance, while for others the obstacles of everyday life make this movement towards acceptance difficult. Achieving harmony with oneself is conditioned by the existence of hope and spirit of life/life courage and by the pressure of doubts on this hope. Doubts can shake this hope so that instead of moving towards acceptance, the patient drifts towards hopelessness and despair. The research design is qualitative and uses a phenomenological-hermeneutic approach. A total of 18 patients were interviewed, divided into three groups of six patients diagnosed with 'type I' diabetes, colitis ulcerosa and patients with coronary occlusion in the rehabilitation phase. The goal of the research was to derive patterns/themes common to the three diagnosed groups regarding the patients' view of health and disease in connection with chronic illness and to elucidate the significance of this view for how the patients coped with everyday life. The research method is inspired by Paul Ricoeur.     

I am not alone: spirituality of chronically ill rural dwellers.

Spirituality plays a vital role in adjusting to chronic illness and rehabilitation nurses strive to gain understanding of their patients' spirituality in order to improve patient care and outcomes. The purpose of this qualitative study was to explore the nature of spirituality in chronically ill rural dwellers and how it relates to their illness. As a part of this pilot project, 10 women with chronic illness volunteered to participate in a phone interview to discuss their spirituality. Content analysis was used to analyze the data. The theme Means the World to Me described what spirituality meant to participants. The following themes described how spirituality related to chronic illness: I Am Not Alone, Putting on a Happy Face, Others Are Worse Off, Transcending Despair and Letting Go. Participants were able to use spiritual coping measures to transcend despair. Results from this study provide rehabilitation nurses with insight into the spirituality needs of chronically ill rural-dwelling women.     

社区护理干预对癫痫患者疾病不确定感及内心希望水平的影响

目的:社区护理干预对癫痫患者疾病不确定感及希望水平的影响。方法:将60例出院癫痫患者随机分为观察组和对照组各30例,观察组进行社区护理干预,对照组未施加任何影响。1年后对住院患者采用疾病不确定感量表(MUIS)、Herth希望指数(HHI)量表进行效果评价。结果:社区护理干预前观察组和对照组在疾病不确定感和希望指数量表测量结果方面比较差异无统计学意义(P0.05);干预后观察组的疾病不确定感明显低于对照组,而希望指数明显高于对照组,差异有统计学意义(P0.01)。结论:社区护理干预可降低癫痫患者疾病不确定感并提高其希望水平。     

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     

A person-centred lifestyle change intervention model: Working with older people experiencing chronic illness

A person-centred health promotion model of care to improve self-care and lifestyle changes for older people with chronic illnesses is conceptualized in this paper. The model supports effective interpersonal communication with nurses and health-care consumers and is developed to concept stage. Older people with chronic illnesses who experience stress, anxiety or social isolation are more likely to be admitted and re-admitted to acute hospitals. Interventions to decrease the risk factors are frequently unsuccessful in this patient group. Programmes, led by nurses, aimed at reducing stress, anxiety and social isolation while supporting older people postdischarge from hospital might be successful. The model integrates research from synthesized case studies and a critical literature review. The practices of interrelating four key elements-'construct', 'context', 'process' and 'outcome'-are proposed for nurses to assist patients advancing self-care and lifestyle change. The model is designed for implementation in outpatient, clinic or community settings.     

Acceptance and denial: implications for people adapting to chronic illness: literature review

AIM: This paper reports an exploration of the terms acceptance and denial by exploring the literature, with the aim of understanding the implications of using these concepts to categorize people's responses to living with chronic illness. BACKGROUND: People learning to live with a chronic illness or condition may be judged and labelled by others as being in denial, particularly when they do not adhere to prescribed treatment regimes. METHOD: A literature search for the period between 1989 and 2003 was conducted using the electronic databases Medline, CINAHL, PSYCArticles, Health Source Nursing/Academic Edition, Academic Search Elite and Sociological Abstracts. Key terms used were 'acceptance and denial' and variations of such themes as 'chronic illness', 'disability', 'adjustment', 'illness discourse', 'medical discourse', 'illness experience', 'labelling', 'self' and 'identity'. DISCUSSION: The theoretical background of the common constructs 'acceptance and denial' are discussed using the psychoanalytic theories of Freud and Kubler-Ross's work on death and dying. Healthcare professionals and lay people commonly refer to the terms acceptance and denial when describing a person's response to chronic illness. Those whose understanding of the illness experience relies on the acceptance-denial framework may not listen when people with chronic illness attempt to tell their own unique story of how they have experienced life with illness. Instead, their listening antennae may be focused on fitting aspects of the experience with stages of adjustment. When others use labels of acceptance and denial, people who are learning to live with a chronic illness may internalize these labels as reflections of the self. This may be most likely when the person using the label is perceived to have authority, such as a healthcare professional. The internalization of negative information associated with these labels may obstruct the reshaping of self-identity that is fundamental when making a transition to living well with chronic illness. CONCLUSION: Healthcare professionals are urged to challenge the stage model of adjustment as a way of understanding the response to illness and to listen instead to the stories people tell. They are encouraged to privilege the person's experience as the basis for developing a sensitive, client-focussed response that takes into account the wider social context of people's lives as well as the medical aspects.     

The health behaviours of Chinese people with chronic illness

This study was undertaken to elucidate the type and range of health-promoting behaviours that Chinese people with chronic illness perform to enhance their health. Eight people with a diagnosed chronic illness were interviewed using a semi-structured interview schedule. From the perspectives of these subjects, health behaviour comprises three dimensions: physical, psychosocial and spiritual. The results of this study clarify health behaviours amongst Chinese people with a chronic illness and illustrate the important influence that culture has upon such activity. Additionally, exploring the health behaviours of these Chinese people can be used to inform and enable nurses to adjust their practices to relate more appropriately to patients’ perspectives.     

Masterworks of art and chronic illness experiences in the elderly

AIM: This article presents findings of a qualitative study, conducted between 1997 and 2000, to investigate the plausibility of integrating masterworks of art with care of the chronically ill elderly, and to analyse perceptions about chronic illness among three groups: registered nurses, nursing students, and the elderly. BACKGROUND AND SIGNIFICANCE: Statistically the incidence of chronic illness increases in the elderly. Although pathophysiology of chronic illness is increasingly understood, few studies explore the experience of living with chronicity from the perspective of the elderly. Understanding and intervening appropriately for the elderly with chronic illness may contribute significantly to improving quality of life for this growing population. ETHICAL ISSUES AND APPROVAL: The study was approved through an Institutional Review Board. Facility permission and participant informed consent were obtained. Anonymity and confidentiality were protected. DESIGN: Using hermeneutic phenomenology and masterworks of art as a centre point for dialogue, the investigators explored the perceptions of nurses, students, and the elderly about living with a chronic illness. A purposive sample of 65 participants made up seven focus groups with which group interviews were conducted. Themes were explicated and analysed from audiotaped interviews until data saturation was reached. FINDINGS: Content analysis of focus group interviews revealed themes of social isolation, inevitable role change, and inertia-movement. Only the elderly acknowledged hope and a steadfast refusal to give up, while nurses and students viewed chronicity more negatively. Themes of social isolation and role change are consistent with other studies of the elderly. A paradox of inertia-movement in the chronically ill elderly has not been reported in the nursing literature. CONCLUSIONS: Paradoxical tension of inertia-movement in the chronically ill elderly appears to be linked to the broader concept of energy in nursing science, and to Parse's theory of human becoming. Masterworks of art can generate energy exchange between the elderly and caregivers, providing a plausible catalyst for meaningful interventions that transcend age and practice settings.     

健康宣教对急性冠状动脉综合征患者疾病不确定感及内心希望水平的影响

目的 探讨健康宣教对急性冠状动脉综合征患者疾病不确定感及内心希望水平的影响.方法 将100例急性冠状动脉综合征患者随机分为观察组和对照组各50例,对照组采用常规治疗,观察组在此基础上给予健康宣教.治疗后对2组采用疾病不确定感量表(MUIS)、Herth希望指数(HHI)量表进行效果评价.结果 治疗前观察组和对照组在MUIS和HHI评分方面比较无显著差异;干预后观察组的MUIS评分明显低于对照组,而HHI评分明显高于对照组.结论 健康宣教可降低急性冠状动脉综合征患者疾病不确定感并提高其希望水平.     

Self-efficacy in chronic illness: the juxtaposition of general and regimen-specific efficacy

Changes in lifestyle are difficult for most people but necessary for those with a chronic illness, for whom changes may involve, among other adjustments, learning new behaviours and/or modifying one's lifestyle. The ease with which such changes occur depends on the person's efficacy beliefs and outcome expectations. This paper will discuss the conceptual issues related to self-efficacy: general, domain, and specific. Examples will be drawn from the health-related behaviour changes required to manage diabetes and rheumatoid arthritis. For this paper, regimen-specific or task-specific behaviour refers to the multiple tasks that the person carries out for management of their chronic illness. Confounding the issue of perceived efficacy (general, domain or specific), is the fact that compliance with all aspects of a recommended self-care regimen will not necessarily result in metabolic control for the person with type 1 diabetes mellitus, weight loss for the person with type 2 diabetes mellitus, or pain control for the arthritic person.