The significance of FM associations for women with FM

Abstract

Purpose: Living with fibromyalgia (FM) means living with a long-term pain syndrome that is invisible to others. Support and understanding from others seem to be important to managing the affected daily life. The aim of this study was to describe the significance of FM associations for women with FM. Methods: Data collection was carried out through focus group discussions with seventeen women with FM. Data were analyzed through thematic content analysis. Results: The findings show that women experienced associations for people with FM as important as they gave access to contacts with others with similar experiences. Their need of togetherness was fulfilled at the association and they described being strengthened by the support received. Because of the lack of information and knowledge about FM, the association was described as an important venue for getting and mediating information about the illness. Conclusions: At the association the women seem to be empowered, which increases their ability to manage their daily lives despite the limitations imposed by FM. Healthcare personnel could not satisfy the women’s needs and to manage to support women with FM. There is a need for communication based on a shared understanding between the women and healthcare personnel.

• Implications for Rehabilitation

• This study highlighted the need for communication based on a shared understanding between people with chronic illness and healthcare personnel to support and strengthen women with FM in their daily lives.

• The FM associations meet the needs for togetherness, confirmation, and information that the women with FM in this study described and healthcare personnel could not satisfy.

• Healthcare personnel can learn from FM associations how to empower women with FM in their everyday lives.

     

Living in the shadow of fibromyalgic pain: the meaning of female partners' experiences

The aim of this study was to elucidate the meaning of being a female partner living with a man with fibromyalgic pain. Fourteen partners were interviewed about the meaning of their experiences, using a narrative approach. A phenomenological hermeneutic method, inspired by the French philosopher Ricoeur, was used to interpret the interview text. The structural analysis is presented in three major themes: struggling to give support and comfort, struggling to keep going on, and experiencing lack of understanding and support. The findings elucidate that the meaning of living with a man with fibromyalgic pain meant living a life strongly influenced by the man's illness and in the shadow of the man's pain. Taking daily life for granted was interrupted and restricted family and social life. Prominent in this study was the frustration partners felt as a result of men's reluctance to communicate. This led to feelings of being excluded from men's emotions. The responsibility day in and day out meant that women's own caring and tenderness were replaced, which brought about an almost constant sense of fatigue. Women became drained by the long duration of men's illness. This gave them a feeling of being alone, although they were a couple. Gaining comfort outside the family helped partners to reach a new insight and appreciation for life, which was viewed from a renewed perspective. This involved feelings of both togetherness and separateness in the relationship. The findings also consider the lack of support from the health care system for female partners living with men with fibromyalgic pain.     

Struggling to maintain balance: a study of women living with fibromyalgia

Thirty-six women with fibromyalgia (FM) were asked to describe how they live with their FM Data were analysed using the constant comparative method The goal was understanding the process of living with FM through theory development The women described living with FM as struggling to maintain balance, this involves recalling perceived normality, searching for a diagnosis, finding out and moving on (transcending the illness) Several women relinquished the struggle because of situations that may or may not be under their control (e g depression and feeling imprisoned by treatment) Over time the illness moves from being a primary life focus to being part of the backdrop of the lives of women with FM     

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.     

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 person's 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. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 495–503, 1997     

Constructions of sexuality for women living with multiple sclerosis

AIM: In this paper we reveal constructions of sexuality that were articulated by 12 women who participated in an inquiry, which aimed to understand the experiences of women who live with multiple sclerosis (MS). The aim of this paper is to consider constructions of sexuality when chronic illness such as MS intervenes. BACKGROUND: In previous studies women placed their sexuality on the agenda for discussion, claiming that their concerns had not previously been vocalized nor understood. DESIGN: This participatory inquiry was framed by the principles of 'look, think and act'. These principles are operationalized as looking at ourselves, reflecting and questioning aspects of our lives, and then taking action to resolve the issues identified. Twelve women aged between 30 and 60 years who lived with MS joined the three researchers for five group sessions. Each session lasted 3 hours. In addition, several women opted to be interviewed individually. In this paper we describe the way in which women have constructed and articulated their sexuality since acquiring MS. FINDINGS: Sexuality has multiple meanings that are shaped and influenced by life experiences. When MS intrudes in a woman's life, sexuality is reshaped against a foundation of previous sexual experiences and expectations. Constructions of sexuality encompassed physical sexual responses, perceptions of appearance and attractiveness to self and others, communication and relationships, self-image and self-esteem, and the sense of affirmation and acknowledgement that women experienced from others in their everyday lives. CONCLUSIONS: This paper reveals that sexuality was not privileged by women but was regarded as an ordinary part of life. Often sexual activity was placed on hold as other aspects of living with a chronic illness intervene, for instance an exacerbation of MS. Whilst this paper has a focus on constructions of sexuality, there is a close relationship to shifts in self and identity. Health professionals need to reject the myths and stereotypes surrounding disabled women and attempt to understand the possible impact of long-term illness on women's sexuality.     

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.     

Relationship-based support for women living with serious mental illness

Relationships are critical to a woman's growth and development, yet when living with serious mental illness, developing and nurturing connections can be challenging. This qualitative study explored the nature and quality of support provided within relationships for 14 women with schizophrenia. Families were key supporters. Female friends with mental illness often provided a meaningful source of connection for participants. Problematic relationships, losses over time, and living in poverty were among the barriers to receiving needed support. Participants conveyed a sense of wanting relational reciprocity as they talked about their relationships and place within the community.     

The experience of living with fibromyalgia: confronting an invisible disability

Fibromyalgia (FM) is a complex, chronic, painful musculoskeletal syndrome which is characterized by extreme fatigue, disordered sleep, and other associated physical and cognitive problems. Because its etiology is unknown, and because no specific pathophysiological mechanisms have been found to underlie the syndrome, making a diagnosis is very difficult. FM adversely affects the quality of life, and the societal costs based on medical expenses, lost wages, lost tax revenue and compensation expenditures are very significant. The purpose of this phenomenological study was to describe and enhance the understanding of the experience of living with FM. The participants included nine women ranging in age from 30 years to 56 years who had been diagnosed with the condition for more than a year. Data were collected by means of unstructured interviews. Thematic analysis, using van Manen's (1990) methodology, identified eight themes: (a) pain-the constant presence, (b) fatigue-the invisible foe, (c) sleep-the impossible dream, (d) thinking of a frog (e) dealing with a flare-up, (f) longing for a normal life, (g) the power of naming-seeking a diagnosis, and (h) living within the boundaries. These themes were integral parts of the whole story, and through their interrelationships, the essence confronting an invisible disability was captured. The findings of this qualitative study have implications for nursing practice, education and research. It has become an increasing challenge for our health care system to adequately cope with the large numbers of persons diagnosed with chronic illnesses. Administrators of these systems can benefit from the information learned during this study.     

Patients' experiences of illness,operation and outcome with reference to gastro-oesophageal reflux disease

BACKGROUND: Describing the illness-story from a patient perspective could increase understanding of living with a chronic disease for health professionals and others, facilitate decision-making about treatment and enhance information about the outcome from a patient perspective. AIM: To illuminate patients' illness experiences of having a gastro-oesophageal reflux disease (GORD), going through surgery and the outcome. METHODS: Twelve patients were interviewed 5 years after having had the operation; six patients had had fundoplication via laparoscopy and six via open surgery. Each patient was asked to talk openly about their experiences, thoughts, feelings and consequences of living with the illness, going through surgery and the period from surgery to the day of interview. A qualitative content analysis was performed concerning the context of the data and its meaning. FINDINGS: Three central categories were identified and nine subcategories: living with GORD- symptoms of the disease affecting daily living, taking medicines, work, family and social life; concerns related to surgery- decision-making about the operation, influence by physicians; life after the operation- outcomes and consequences, side-effects and complications of the operation, sick leave, information and sharing experiences with future patients. All patients were free from symptoms of the illness after surgery independent of type of surgery, but side-effects from surgical treatment varied individually. Interviewees would have liked information concerning side-effects after surgery from previous patients. CONCLUSIONS: This study contributes to knowledge about patients' long-term suffering, their control of symptoms and how they have tried to cure themselves, but also about their concerns about surgery and the importance of surgical treatment to their quality of life. They wanted information about treatment, outcome and consequences, not only from a health care perspective but also from previous patients having had the same treatment.     

Patients' experiences of living with oesophageal cancer

Aims. The aim of this study is to describe patients’ experiences of living with oesophageal cancer and how they seek information. Background. Oesophageal cancer is a devastating disease with poor prognosis. Nursing care for individuals with oesophageal cancer requires increased knowledge of how they experience illness and how it affects them. Method. Data were collected by semi‐structured, qualitative interviews with 13 participants. Content analysis was used to analyse data. Results. Four themes were identified: (i) Experiences of becoming a patient diagnosed with oesophageal cancer is distinguished by the participants’ experiences of vague symptoms, of receiving the diagnosis and of existential concerns evoked by the illness. (ii) Experiences of undergoing investigations and treatment consist of the participants’ experiences of extreme tiredness in relation to investigations and treatment. (iii) Experiences of intrusions in daily life is conceptualized by the participants’ experiences of how the illness influenced their daily life. (iv) Managing a life‐threatening illness consists of a variety of strategies, which the participants employed to manage their life‐threatening illness. Conclusions. The participants were unprepared of receiving a diagnosis of oesophageal cancer. Dysphagia, fatigue and uncertainty influenced the participants’ everyday life. To manage the illness one of their strategies was seeking for information. The physicians were considered the main source of information, but family as well as friends with medical knowledge were also acknowledged as valuable sources. Relevance to clinical practice. Understanding patients’ experiences of living with oesophageal cancer is important to improve nursing care. When caring for these patients, focus ought to be on the whole family. In nursing care, it is important to be aware of the effects of dysphagia and fatigue. Health‐care professionals ought to organize meetings with fellow patients and recommend literature and websites that provide patients with high quality information.     

Living as a family in the midst of chronic illness

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.     

Proactive management of menstrual cycle abnormalities in young women

The goal of an integrative science of women's health is bringing together childbearing with women's health during the lifespan. Enhancing a woman's ability to conceive and maintain a pregnancy is influenced by decisions made well before the beginning of a pregnancy. Identifying ovulatory disorders makes it possible to intervene early in a young woman's childbearing years. Gynecologic charting typically used in natural family planning provides information to the woman and to the healthcare provider that is useful for diagnosis. If young women have a better understanding of fertility and menstrual cycle function, they are in a stronger position to make informed decisions about how they wish to manage their reproductive and sexual health. It may be possible to educate the young woman in health habits that will lead to a healthy pregnancy when she chooses and/or to treat the cause of the ovulatory disorder. This article focuses on polycystic ovary syndrome and hypothalamic dysfunction which can cause menstrual cycle abnormalities in which gynecologic charting is useful in young women.     

Illness narratives of persons with post-polio syndrome

This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.     

Dynamics of hope in adults living with HIV/AIDS: a substantive theory

AIM: The aim of this paper was to discuss a substantive theory on the dynamics of hope in adults living with the human immunodeficiency virus/acquired immune deficiency syndrome. BACKGROUND: Existing literature describes how the dynamics of hope have profound connections with human essence and life, wellbeing and health, suffering and illness, and nursing care, in general as well as in the context of human immunodeficiency virus/acquired immune deficiency syndrome. METHOD: The data consisted of five original articles describing the dynamics of hope in people living with human immunodeficiency virus/acquired immune deficiency syndrome and their significant others in Finland. Meta-synthesis was adapted to synthesize the original studies into a substantive theory. FINDINGS: The core category that emerged was the dynamically alternating balance between interconnected hope, despair and hopelessness based on folding (closing down of) and unfolding (opening up of) possibilities with regard to the dynamics of hope in dealing with the changing self and life with human immunodeficiency virus/acquired immune deficiency syndrome. The dynamics of hope include the subprocesses of hope, despair and hopelessness. CONCLUSION: The dynamics of hope in adults living with human immunodeficiency virus/acquired immune deficiency syndrome is an important phenomenon in nursing practice and nursing science. In taking care of people living with acquired immune deficiency syndrome, factors contributing to folding possibilities should be minimized, if possible, and factors contributing to unfolding possibilities should be nourished. The present study adds to the knowledge-base of nursing science about the dynamics of hope in people living with acquired immune deficiency syndrome. Future research should focus on testing this theory in people living with acquired immune deficiency syndrome.     

Relationships between depression,family function,physical symptoms,and illness uncertainty in female patients with chronic kidney disease

This study investigated the relationship between depression, family function, physical symptoms, and illness uncertainty in women with chronic kidney disease. Data were collected through structured questionnaire that was completed by 120 women undergoing hemodialysis. Assessment instruments consisted of the Family Adaptability, Partnership, Growth, Affection, Resolve Scale, Symptom Experience Scale, Mishel's Uncertainty in Illness Scale for Adults, and the Center for Epidemiological Studies‐Depression Scale. The higher the uncertainty about illness and physical symptoms, the higher is the level of depression, and the better the family function, the lower is the level of depression. Greater uncertainty was associated with poorer family function and worsening physical symptoms. A regression model explained 41% of the variance in depression. Significant predictors of depression were physical symptoms, living alone, illness uncertainty, and “poor” subjective health status. To improve depression of women with chronic kidney disease, nurses need to reduce physical symptoms and illness uncertainty in these patients and improve their subjective health status. In addition, the establishment of a therapeutic support system considering living arrangement will help to reduce depression in women with chronic kidney disease.     

Being devastated by critical illness journey in the family: A grounded theory approach of post-intensive care syndrome-family

ObjectivesThis study aimed to explore the meaning and structure of postintensive care syndrome experienced by families of critically ill patients.MethodsThis qualitative study applied the constructivist grounded theory approach and conducted one or two interviews with eight participants with postintensive care syndrome-family for a total of 12 interviews. The contents of the interviews were analysed through line-by-line coding, focused coding, and categorisation. Data collection and analysis were iterative, to enable continuous comparative analysis.FindingsThe core category of postintensive care syndrome experienced by families was ‘being devastated by the critical illness journey in the family’ and comprised the interactions of four categories: ‘overwhelming intensive care experience’, ‘taking responsibility for the recovery trajectory of critical illness’, ‘life devastated by the trauma of intensive care and family caregiving’, and ‘balancing and compromising’.ConclusionBased on this grounded theory approach, postintensive care syndrome experienced by families is a complex and ongoing phenomenon that arises from the recovery trajectory of a critical illness. It involves mental, physical, social and familial aspects, particularly the impact on the patient’s family.Implications for Clinical PracticeThe findings can guide critical care nurses to understand postintensive care syndrome experienced by families in providing patient or family-centred care. To improve the long-term outcomes and quality of life for families, it is necessary to assess their unique needs within the continuum of post-intensive care syndrome experienced by the family and to propose interventions to satisfy those needs.