Eva Gjengedal

The Bodily Suffering of Living with Severe Psoriasis: In-Depth Interviews with 22 Hospitalized Patients with Psoriasis

Psoriasis is one of the most common chronic skin diseases. The author presented results from a qualitative study focusing on patients with severe psoriasis in an acute phase and their experience of living with the disease. Twenty-two hospitalized patients with psoriasis were interviewed in depth. The interviews were consecutively analyzed according to grounded theory methodology. Bodily suffering emerged as a core variable in the data. Bodily suffering includes the following categories: the visible body, staying on an even keel, coping with an all-consuming disease, and social vulnerability. The results of this study indicate that the criterion for the management of psoriasis should be the patients’own perception of the consequences of the disease.

FIGHTING BACK—STRUGGLING TO CONTINUE LIFE AND PRESERVE THE SELF FOLLOWING A STROKE

The aim of this longitudinal phenomenological study was to explore how female stroke survivors experienced their life following a stroke and how they managed their altered situation. Twenty-five women suffering first-time stroke were interviewed in depth three times during the first one and a half years after the stroke. Applying the method of Giorgi, we found that there was a lengthy struggle to continue life and preserve the self following the stroke. The struggle was closely related to their deeply rooted identity as mothers, wives, grandmothers, and housewives. The situation of women following a stroke needs particular attention because their needs may conflict with their female caring roles. On the other hand, supporting them in transforming these roles may secure their sense of self and a continued meaningful life.

Life beyond cancer: women's experiences 5 years after treatment for gynaecological cancer.

The number of long-term survivors after cancer is increasing, mainly as a consequence of more efficient treatment. This creates a need for knowledge about experiences of life after cancer. The aim of this study is to gain a deeper understanding of lived experience of long-term cancer survivors and how they experienced cancer care. A qualitative study was performed, based on 32 in-depth interviews with 16 women declared as long-term survivors, aged 39-66. The first interview was made 5 years after treatment and the second a year later. The study has a phenomenological-hermeneutical approach in which the womens own experiences are the basis for understanding their life-world. The long-term surviving women experienced profound changes in their lives and had to adapt to new ways of living. Three core themes were identified: living with tension between personal growth and fear of recurrence: the women spoke of a deep gratitude for being alive and of basic values that had become revitalized. They also lived with a preparedness for recurrence of cancer. Living in a changed female body: the removal of reproductive organs raised questions about sexual life and difficulties related to menopause. Feeling left alone - not receiving enough information and guidance after treatment: the process of sorting things out, handling anxiety, bodily changes and menopause were described as a lonesome journey, existentially and psycho-socially. The findings are discussed in relation to Heideggers perspective of anxiety towards death, existential loneliness and humans as self-interpreting beings. Surviving cancer entails living with profound life-changes, demanding as well as enriching. Existing follow-up regimes need to sharpen focus on psycho-social aspects, information and guidance. Additional follow-up programmes, focusing solely on the individual woman and her specific needs, are necessary.

An act of caring - patient diaries in Norwegian intensive care units.

AIM The aim of this study was to obtain more knowledge about the background, extent and implementation of diaries in Norwegian intensive care units (ICUs) providing mechanical ventilation to adult patients. BACKGROUND The growing understanding of long-term consequences of intensive care therapy has compelled nurses to introduce patient diaries to prevent problems after discharge from ICU. Research on this practice is limited. DESIGN/METHOD The study had a qualitative descriptive design, and was conducted by means of semi-structured telephone interviews with 30 participants, all experienced intensive care nurses. The strategy of analysis was a template organizing style. FINDINGS The findings show that 31 out of 70 ICUs offer patient diaries, and many units have a long history of diary writing. Most of the units have some kind of guidelines, and the study has shown that diaries serve dual purposes; one of caring and another of therapy. Although these two dimensions seemingly present a paradox from a theoretical point of view, a combination appears to be at work in clinical practice. This may be explained by a tendency in nursing to regard caring as superior to therapy. The writing frequency varies, and the units that reported high activity provided follow-up programs in addition to diary writing. Diary writing as a nursing intervention is threatened by a lack of funding.

Living with Long QT Syndrome: A Qualitative Study of Coping with Increased Risk of Sudden Cardiac Death

Long QT syndrome (LQTS) is a congenital disorder associated with increased risk of sudden cardiac death; LQTS patients and their families are offered diagnostic or predictive genetic testing. The purpose of this qualitative study was to investigate the psychosocial aspects of living with LQTS, to identify LQTS patients’ daily life challenges and coping strategies, and to describe their experiences with healthcare services. In-depth interviews were conducted with seven individuals who had been tested for long QT genetic mutation. Four of these participants had an implantable cardiac defibrillator (ICD). The participants reported that early and gradually acquired knowledge of the syndrome was an advantage. They also reported experiencing worries and limitations in daily life, but their main concern was for their children or grandchildren. Healthcare providers’ minimal knowledge of LQTS resulted in uncertainty, misinformation, and even wrong advice regarding treatment. The results suggest that regional centers, with the appropriate expertise, should investigate and counsel LQTS patients and their families.

Life After Burn Injury: Striving for Regained Freedom

Focusing beyond survival, the priority of modern burn care is optimal quality of life. Our aim with this study, which was informed by phenomenology, was to describe and identify invariant meanings in the experience of life after major burn injury. Fourteen adults having sustained a major burn were interviewed, on average, 14 months postinjury, and asked about their experience of important aspects of life. The accident meant facing an extreme situation that demanded vigilance, appropriate action, and the need for assistance. The aftermath of the burn injury and treatment included having to put significant effort into creating coherence in their disrupted personal life stories. Continuing life meant accepting the unchangeable, including going through recurrent processes of enduring, grief, fatalism, comparisons with others, and new feelings of gratefulness. Furthermore, a continuous struggle to change what was changeable, to achieve personal goals, independence, relationships with others, and a meaningful life, were all efforts to regain freedom, aiming for a life as it was before—and sometimes even better.

Totally Changed, Yet Still the Same: Patients’ Lived Experiences 5 Years Beyond Bariatric Surgery

Bariatric surgery provides sustainable weight loss and increased quality of life for most, but not all patients. To increase the knowledge of this complex patient group and their needs during follow-up, we aimed to describe the essential meaning of bariatric surgery patients’ long-term experiences by using a phenomenological lifeworld approach. Eight patients were interviewed between 5 and 7 years after bariatric surgery. Life after bariatric surgery was described as living with tension, ambivalence, and reinforced attention toward one’s own body. The tension was related to embodied change and altered relations to the social world. The patients express an ongoing demand for control of health-related habits and practices, and to not lose control over the body again. Surgical weight loss and improved physical function do not necessarily mean changed health-related habits and practices in the long term. Experiencing weight regain is connected with emotional stress, shame, and self-contempt.

The significance of fellow patients for the patient with cancer: what can nurses do?

Based on two qualitative studies, this article describes the significance of fellow patients in cancer wards, and the relevance for health personnel involved in patient–patient relationships is discussed. Using grounded theory, in-depth interviews were conducted in the first study with 21 adult cancer patients and in a follow-up study with 8 patients and 27 health care providers. The findings indicate that the significance of fellow patients for the patient with cancer can be described in terms of three different dimensions: attitudes toward own illness, interpersonal relationships, and environmental factors. Although contact with fellow patients most often seems to engender positive experiences, some negative experiences are reported also. The suggestions in this article for practical implications are meant to help nurses and other health care providers to promote positive and prevent negative consequences in patient–patient relationships in hospitals.

Methodological Problems Associated With Practice-Close Research

Within the health professions, it is not uncommon to investigate problems in ones field of practice, but researchers who study their own field are bound to encounter both ethical and methodological problems. In this article, the authors focus on some of the challenges in what they have chosen to call practice-close research. They focus on two issues within this area: the researchers ability to explicate his or her preconceptions and the researchers interaction with the participants in the study. It is difficult to treat these dimensions separately, as they border on and will influence each other. The discussion in the article of methodological challenges of practice-close research is based on experiences gleaned from a study in which the first author investigated her own practice.

Men in the women’s world of hereditary breast and ovarian cancer—a systematic review

Little is known about men seeking genetic counseling for hereditary breast and ovarian cancer (HBOC). We review the sparse literature on men attending such genetic consultations. Two main themes are identified: the women’s influence on the genetic counseling process, and the psychological impact on men. The women in the HBOC families have an influence on the men’s decision to request genetic testing, and they take the leading role in communicating genetic information. With respect to psychological impact, the men suffer from grief and fear of developing cancer, and they seem to use avoidance as a coping strategy. Carrier males experience feelings of guilt because they might have passed on a mutation to their children. Non-carriers experience test-related stress if their siblings tested positive. Mutation status may have an impact on reproductive issues. These findings are discussed in light of gender issues and literature concerning men’s health behavior. Further studies are needed to provide optimal care for men seeking genetic counseling for hereditary breast and ovarian cancer.