Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.
Concurrent with the recent enthusiasm for qualitative research in the health fields, an energetic call for methods by which to synthesize the knowledge has been generated on various substantive topics. Although there is an emerging literature on meta-analysis and metasynthesis, many authors overestimate the simplicity of such approaches and erroneously assume that useful knowledge can be synthesized from limited collections of study reports without a thorough analysis of their theoretical, methodological, and contextual foundations and features. In this article, the authors report some of the insights obtained from an extensive and exhaustive metastudy of qualitative studies of chronic illness experience. Their findings reveal the complexities inherent not only in any phenomenon of interest to health researchers but also in the study of how we have come to know what we think we know about it.
Nurses may have little knowledge about scleroderma. It is possible that they, through their ignorance of such rare conditions, may stigmatize individuals. Through understanding about rare diseases will they be able to teach patients the skills necessary to help them cope with their symptoms, as well as the reactions of others to their diagnosis and appearance.
This randomized controlled trial was designed to determine whether practising stress management techniques would decrease activity and promote psychosocial functioning in inflammatory bowel disease patients. Eighty ambulatory adults received a pre-intervention interview, at which time baseline data about disease activity and psychosocial functioning were collected. They were then randomly assigned to either the intervention or control group. The intervention group received six classes on stress management which included autogenics, personal planning skills and communication techniques. All 80 subjects were followed up at 4-month intervals for 1 year by interviewers who were blind to group designation. The data collection instruments, which were used at all assessment points, comprised three questionnaires: the Crohn's Disease Activity Index (CDAI) and the Inflammatory Bowel Disease (IBD) Stress Index. These instruments produced scores which decreased with improvement in physical and psychosocial well-being. At all assessment points, both the CDAI and IBD Stress Index scores dropped significantly (P less than 0.05) from baseline in the treatment group. However, there was no significant change in the scores of the control group throughout the study year. There were no significant changes in medications at any assessment point in either group that could account for changes in the scores. The results of this study indicate that stress management techniques may have therapeutic benefits for IBD patients.
Qualitative researchers have long recognized that fatigue is a common concern among those with chronic illness; however, the insights derived from this body of inquiry have not been synthesized into a coherent body of clinical knowledge that could provide direction for nursing practice. Using a synthesis approach of meta-study, the authors identify four predominant assumptions embedded in qualitative studies that have influenced the way researchers have interpreted and made sense of their findings about fatigue in chronic illness over the past two decades. They argue that these assumptions may have inhibited the development of more dynamic, comprehensive understandings of fatigue. They conclude that addressing some of the methodological issues within this body of research might lead to a more accurate portrayal of the complexity, fluidity, and contextual nature of the fatigue experienced in chronic illness.
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