Siv Söderberg

Struggling for Dignity: The Meaning of Women’s Experiences of Living with Fibromyalgia

Fibromyalgia (FM) is a common chronic pain syndrome with an obscure etiology, which mostly afflicts middle-aged women. In this study, 14 women with FM were interviewed about the meaning of living with the illness. A phenomenological-hermeneutic method was used to analyze and interpret the interview texts. The findings show that being a woman with FM means living a life greatly influenced by the illness in various ways. The women’s experiences of living with FM were presented in three major interlaced themes: loss of freedom, threat to integrity, and a struggle to achieve relief and understanding. This study highlights the importance of meeting people suffering in illness with respect for their human dignity. The care of women with FM must empower the women to bring to bear their own resources so that they can manage to live with the illness.

Hovering Between Suffering and Enduring: The Meaning of Living With Serious Chronic Illness

Illness is part of life and hence always has a place in a life history. All that went on before the time of the illness, how life was in the past and what hopes and dreams were interrupted and changed, all influence the experiences of illness. The authors interviewed 5 women and 5 men with different kinds of serious chronic illnesses and used phenomenological hermeneutic method to interpret the transcribed interviews. They present the findings in three major themes: experiencing the body as a hindrance, being alone in illness, and struggling for normalcy. Participants seemed to hover between an escape from the emotional suffering pain of illness and the emotionless state of enduring. The comprehensive understanding illuminated that living with a serious chronic illness means living a life that is hovering between enduring and suffering but also including the process of reformulation of the self.

The Experiences of Close Relatives Living with a Person with Serious Chronic Illness

Living with serious chronic illness has a directly threatening effect on the life course of healthy relatives. The aim of this study was to elucidate the meaning of close relatives’experiences of living with a person with serious, chronic illness. Using a narrative approach, the authors interviewed 13 spouses and 1 daughter about the meaning of their experiences. They used a phenomenological hermeneutic method to interpret the interview text. The structural analysis revealed three major themes: A Shrinking Life, Forced to Take Responsibility, and Struggling to Keep Going. Close relatives in this study seemed to be living lives characterized by a reduced sense of individual freedom and an increased sense of responsibility for the care of the ill person. It means struggling to obtain the strength to manage their duty and an inner sense of community and of solidarity. The authors interpret the findings in the light of the works of philosophers who have described ethical demands and natural love between people.

Struggling for a Tolerable Existence: The Meaning of Men’s Lived Experiences of Living with Pain of Fibromyalgia Type

Chronic pain is a major health problem in Sweden because of its consequences in daily life. Fourteen men with fibromyalgia-type pain were interviewed regarding their experiences. A phenomenological hermeneutic method was used to interpret the transcribed interviews. Three major themes emerged: experiencing the body as an obstruction, being a different man, and striving to endure. Overall, the meaning of men’s lived experience of chronic pain was experienced as change in the body, self, and relationships. Striving to live life required achieving balance during both calm and difficult phases of the illness—struggling for a tolerable existence. Information from this study could provide guidelines for health care staff members to give empathic and supportive care to men living with a long-term illness.

Living with fibromyalgia : sense of coherence, perception of well-being, and stress in daily life

Fibromyalgia (FM) is a chronic pain syndrome that has a considerable impact on the ill persons daily life. The purpose of this study was to describe levels of sense of coherence (SOC), perceptions of well-being, and stress in daily life in women with FM in comparison with healthy women, and to determine whether SOC is related to perceived levels of stress and well-being. Thirty women with FM were compared with 30 healthy women matched for Type A behavior. The results revealed a complex picture of the women with FM. On the one hand, they reported many symptoms but, on the other, they rated themselves as feeling quite well and experiencing an SOC in life, despite severe problems. The FM women with a stronger SOC perceived greater well-being than those with a weaker SOC. They felt more hopeful, more free, more valuable, and more like others. Results suggest that women with a weaker SOC may need extra support. More research is needed to investigate the experience of living with FM in order to discover what it is that makes life worthwhile despite high symptom levels.

TRANSITIONS EXPERIENCED BY WOMEN WITH FIBROMYALGIA

Fibromyalgia (FM) is a chronic pain syndrome the hallmarks of which are a chronic diffuse musculoskeletal pain, tender points, and fatigue. The majority of those who have FM are middle-aged women. The aim of this study was to illuminate the transitions experienced by women with FM. Twenty-five women with FM were interviewed about living with FM. The interviews were analyzed using thematic content analysis. The analysis revealed five categories; transitions in patterns of daily life, family life, social life, and working life, and learning to live with the changes brought about by FM. The categories were subsumed into one theme: FM as the choreographer of activity and relationships. The transitions experienced were illuminated in a core story. The experience of transitions is apparently something that is invisible to almost everyone except the women themselves. Paradoxically, the women described transitions in life due to the illness, but they felt that other people saw them as healthy. It is like living in two worlds simultaneously, the world of the sick and the world of the healthy.

Re-visiting the ICU Experiences of follow-up visits to an ICU after discharge: a qualitative study.

The aim of this study is to describe how people who have been critically ill, and their close relatives experience a post-discharge, follow-up visit to the intensive care unit (ICU) that provided the care. There is a lack of studies from such a standpoint. The study design is qualitative. A total of 18 adults participated; nine had been critically ill and nine were close relatives, all made a post-discharge follow-up visit to an ICU in the northern part of Sweden. The study data was collected through personal interviews, conducted after the follow-up visit, using a narrative approach. The data were then subjected to qualitative thematic content analysis which resulted in four themes: receiving strength from returning together; making sense of the critical-illness experience; feeling grateful to have survived and the possibility of improving the care. People who had been critically ill and close relatives felt that returning together was valuable. Meeting the staff, with whom participants felt they had developed a relationship, made it possible for them to express their gratitude for the treatment and nursing care received, and to suggest improvements. The interviews revealed that the follow-up visit was seen as an important way of learning what had happened and why during the period of critical illness.

Using information and communication technology in home care for communication between patients, family members, and healthcare professionals: a systematic review

Introduction. Information and communication technology (ICT) are becoming a natural part in healthcare both for delivering and giving accessibility to healthcare for people with chronic illness living at home. Aim. The aim was to review existing studies describing the use of ICT in home care for communication between patients, family members, and healthcare professionals. Methods. A review of studies was conducted that identified 1,276 studies. A selection process and quality appraisal were conducted, which finally resulted in 107 studies. Results. The general results offer an overview of characteristics of studies describing the use of ICT applications in home care and are summarized in areas including study approach, quality appraisal, publications data, terminology used for defining the technology, and disease diagnosis. The specific results describe how communication with ICT was performed in home care and the benefits and drawbacks with the use of ICT. Results were predominated by positive responses in the use of ICT. Conclusion. The use of ICT applications in home care is an expanding research area, with a variety of ICT tools used that could increase accessibility to home care. Using ICT can lead to people living with chronic illnesses gaining control of their illness that promotes self-care.

The meaning of feeling well in people with moderate or severe traumatic brain injury

AIM The aim of this study was to elucidate the meaning of feeling well for people with moderate or severe traumatic brain injury. BACKGROUND Considerable attention has been given to research consequences, quality of life and satisfaction with life in people with traumatic brain injury. Most studies reveal negative aspects of living with traumatic brain injury. Knowledge that provides an understanding of the meaning of feeling well for people with a traumatic brain injury entails the possibility that they could receive support to feel well, despite their injury. DESIGN This study used a qualitative research approach, as the aim was to elucidate meaning. METHODS Data were collected through qualitative research interviews with two women and six men with moderate or severe traumatic brain injury who had lived with the injury for between 7-15 years. A phenomenological hermeneutic method was used to interpret the data. RESULTS The meaning of feeling well for people with moderate or severe traumatic brain injury was that the initially unfamiliar life with traumatic brain injury became familiar. This included finding strength, regaining control over everyday life, being close to someone and being good enough. People with traumatic brain injury felt well when they became reconciled with the circumstances of their life and created a new entity in that life, in which their complete health had been lost. RELEVANCE TO CLINICAL PRACTICE This study helps professionals to enhance their understanding and awareness of the possibilities for people with moderate or severe traumatic brain injury to feel well. The study showed that people with traumatic brain injury needed a lot of strength to achieve this. Professionals can help them to feel well by getting to know them and thus find ways to support the persons feeling of wellbeing.

Functioning and disability 6-15 years after traumatic brain injuries in northern Sweden

Objectives – To assess long‐term functioning and disability after traumatic brain injury (TBI).