Living a meaningful life with chronic pain from a nursing perspective. Narrative approach to a case story

This paper is a case story discussing the experience of chronic pain from the perspective of the sufferer and suggests ways of improving the use of this perspective in nursing care. A narrative approach is adopted and the analysis was based on content analysis. A condensation of meaning-units revealed a variation in subthemes: the body in pain, striving to preserve self and self-fulfilment. The extent to which living a meaningful life is possible seems to depend on several complex factors, including a person's belief system, life experiences, personal resources, the meaning of pain and the extent to which nurses understand the overall situation. This story might indicate that nociceptive pain can be less important than pain that reduces long-term life quality. A better understanding of living with chronic pain based on cognitive-behavioural techniques could be linked to the information drawn from the narrative and used to improve nursing practice.     

Tiredness and fatigue during processes of illness and recovery: A qualitative study of women recovered from fibromyalgia syndrome

Fibromyalgia syndrome (FMS), a chronic musculoskeletal pain condition, is often accompanied by fatigue. In this study, inspired by narrative approaches to health and illness, we explore how women who have regained their health after FMS describe tiredness along a storyline from before they fell ill, through their illness, recovery process, and present-day health. The data derive from qualitative interviews with eight Norwegian women who previously suffered from FMS but who no longer had the condition at the time of interview. We undertook a narrative analysis to understand the complexity of the stories about tiredness and fatigue and on this basis identified a storyline based on four sub-narratives: 1) Alarming but ignored tiredness (before illness); 2) paralyzing fatigue (during illness); 3) making sense of fatigue (recovery process); and 4) integrating tiredness into life (today). The findings highlight participants’ different understandings and meanings of tiredness and fatigue and the ways in which these link past, present, and future. Significantly, a clear distinction between tiredness and fatigue was not always found. Overall, the storyline that emerges from the narratives is about balancing tiredness/fatigue with everyday life, and how this unfolds in different ways across the span of FMS, from falling ill to recovering and regaining health.     

Living with Continuous Muscular Pain—Patient Perspectives

The purpose of the present study was to focus on the patient perspectives of living with chronic muscular pain, and to identify factors that can explain and give further understanding of how the condition influences everyday life. Forty women with fibromyalgia, living in two different cultural, health care and social security settings, Sweden and the USA, were interviewed, using a semi-structured format. Three preliminary typologies are suggested for further studies: Encounters, Consequences, and Strategies. The study is presented in two articles: Part I: Encounters and consequences, Part II: Strategies for daily life. This first article shows that the contradiction between the patients' perception of illness and the lack of objective findings is stressful. The women feel rejected, misunderstood, and disbelieved, which prevents them from dealing with their situation constructively. Long investigation periods provoke anxiety, and confirmation of the diagnosis is a relief. Daily routines are disrupted, conflicts between life roles lead to additional stress and the women experience loss of ability to perform valued activities, lack of physical fitness and loss of future opportunities. Patients need early and adequate information and the consequences of the condition must be acknowledged and taken into consideration if secondary economic and psychosocial consequences are to be minimized.     

The potential benefits of applying a narrative analytic approach for understanding the experience of fibromyalgia: a review

Purpose: People with fibromyalgia (FM), a medically unexplained illness, habitually experience widespread pain and fatigue. While some qualitative research has aimed to understand the experiences of people with FM, studies from a specific narrative perspective are particularly lacking. This review argues that future research could be significantly enhanced by studies which analyse the narratives of people with FM. Method: This argument is made through reference to an examination of the extant qualitative literature on the experience of FM and theories and narrative studies on chronic illnesses and identity. Results: The empirical literature is reviewed from a narrative perspective; this assumes that the stories people tell reveal much about their identities and social worlds. As such, it is proposed that narrative analysis is particularly well suited for exploring issues of self and culture and for appreciating how meanings evolve over time. Further, it is also argued that consideration of these issues is particularly relevant for understanding the experience of FM given the enigmatic nature of the syndrome and its chronic course. Conclusions: The review concludes by emphasizing that narrative analysis is a valuable method which offers the potential for uncovering novel insights about the illness experience for these individuals.

Implications for Rehabilitation

• Fibromyalgia is a chronic syndrome characterised by pain and fatigue.

• Previous research has neglected the social context within which experience of fibromyalgia develops.

• Narrative studies have the potential to reveal how people make sense of illness.

• It is important for health professionals to acknowledge and validate the uncertainly of the illness experience in fibromyalgia.

     

Synergy towards health: a nursing intervention model for women living with fibromyalgia, and their spouses

AIM: The purpose of this study was to develop a consensus-based nursing intervention model for women living with fibromyalgia, their spouses and nurses working in a community health centre in Québec, Canada. BACKGROUND: Fibromyalgia syndrome, a rheumatic disorder associated with severe chronic pain and fatigue, has a major impact on the lives of individuals and their family. To date, research results on effective interventions are somewhat limited and inconclusive. Few studies take into account the perspective of those who live with this health problem on a day-to-day basis. METHODS: Data were collected mainly in 1999, through in-depth interviews and through group meetings using a qualitative research design, along the lines of the constructivist paradigm. The analysis plan aims for movement between the global and the specific: synthesis and thematic analysis. Analysed data were submitted to all participants throughout the data-collection process, thus allowing for shared constructions. FINDINGS: Results present the general consensus stemming from shared construction in all three groups. The nature of the intervention involves two major elements, support and teaching along with the fundamental importance of believing in the person. The timing of the intervention and the health and social context in which the intervention occurs also emerge as integral parts of the model. Synergy towards health in fibromyalgia emerges as the constitutive pattern composed of the following three elements: personal growth, spousal and professional support. The discussion addresses the model's components and uses an ecological perspective, in order to consider all the contexts that greatly influence the intervention. Empowerment is embedded in this intervention model. CONCLUSIONS: This study shows that research based on partnership allows the integration of perspectives and skills of various actors so as to develop meaningful interventions for both those seeking care and health professionals.     

Living with major depression: experiences from families' perspectives

The aim of this study was to describe the ways of living with major depression in families. Seven families with an adult member who suffered major depression participated, in all 18 participants. Data were collected from seven narrative group interviews, one with each family. A qualitative thematic content analysis was used and the text was coded according to its content and further interpreted into themes. Findings consist of five themes: 'Being forced to relinquish control of everyday life'; during depression the family members lost their energy and could not manage everyday life. 'Uncertainty and instability are affecting life'; everyday life in the families was unstable and emotions influenced the atmosphere. 'Living on the edge of the community': the families periodically lived in seclusion. 'Everyday life becomes hard'; everyday life was demanding for everyone in the family and the responsibility shifted between family members. 'Despite everything a way out can be found'; the families as a unit as well as individually had their own ways of coping and finding some kind of satisfaction within the bounds of possibility. The families' experiences were demanding. Children were aware of their parent's depression and were involved in managing everyday life and emotionally affected by the situation. This legitimates the need for nurses and other healthcare professionals to have a family's perspective on the whole situation and to include partners as well as children and take their experiences seriously when supporting and guiding a family. It is important to develop strategies which in particular include children in the planning, provision and receiving of care as well as unburden them with the responsibility. It is also important to support the family in their own coping strategies with a major depressive episode.     

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.     

Close relatives in intensive care from the perspective of critical care nurses

Aim. The aim was to describe critical care nurses’ experiences of close relatives within intensive care. Background. There is a lack of research describing critical care nurses' experiences of the significance of close relatives in intensive care. Knowledge in this area will support critical care nurses to develop good nursing care for the critically ill person and their close relatives. Design and method. The design of the study was qualitative. Data collection was carried out through focus group discussions with 24 critical care nurses in four focus groups during spring 2004. The data were subjected to qualitative thematic content analysis. Results. The focus groups discussions showed that the presence of close relatives was taken for granted by critical care nurses and it was frustrating if the critically ill person did not have any. Information from close relatives made it possible for critical care nurses to create individual care for the critically ill person. They supported close relatives by giving them information, being near and trying to establish good relations with them. Close relatives were important. Critical care nurses lacked forums for reflection and discussion about the care given. Relevance to clinical practice. This study indicates that close relatives are a prerequisite for critical care nurses to give good nursing care to meet the needs of the critically ill person. A communication based on mutual understanding is necessary if critical care nurses are to be able to support close relatives. Dealing constantly with situations that were ethically difficult without any chance to reflect was an obstacle for critical care nurses to improve their work with close relatives.     

Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study

Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2‐month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family‐centred support may be most effective.     

Efficacy of the whole-body vibration for pain,fatigue and quality of life in women with fibromyalgia: a systematic review

Purpose: To determine the quality of evidence on the use of whole-body vibration (WBV) in controlling pain, fatigue and quality of life in women with fibromyalgia.

Methods: The search involved MEDLINE/PubMed, LILACS, CINAHL, CENTRAL and PEDro, without temporal or language restriction. The terms “fibromyalgia” and “whole-body vibration” were used. Trials (randomized or quasi-randomized) that compared a group of women with fibromyalgia who received WBV to a control group with no intervention were included. The quality of evidence was assessed using the GRADE system. The quantitative evaluation by meta-analysis was also used, whenever possible.

Results: Three studies were included. Regarding the outcome pain, it has not been possible to assess the magnitude of effect of treatment. The result of the outcome fatigue showed no difference between the groups after the proposed intervention (Mean Difference: 0.01; 95% CI: ?0.11 to 0.09). The meta-analysis for the outcome quality of life showed a small difference between groups, favoring the WBV group (Standard Mean Difference: 0.4943; p?=?0.05; 95% CI: 0.0045 to 0.9841).

Conclusions: The results, based on very low quality of evidence, were inconclusive regarding pain, and showed no clinically important effects on the control of fatigue and improvement of quality of life.

• Implications for rehabilitation

• There is no evidence to support the use of whole-body vibration for pain treatment of women with fibromyalgia.

• The use of whole-body vibration in women with fibromyalgia showed no clinically important effects in the control of fatigue and improvement of quality of life.

     

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     

Elderly peoples' experience of nursing care after a stroke: from a gender perspective

Title.  Elderly peoples' experience of nursing care after a stroke: from a gender perspective.
Aim.  This paper is a report of a study conducted to explore, from a gender perspective, older people's experiences of nursing care after a stroke.
Background.  Little attention has been given to gender differences in nursing care. The majority of people who have a stroke are older. Improving knowledge of the gender perspectives of older men and women regarding nursing care after stroke is crucial.
Method.  This was a qualitative study based on interviews with five women and five men between 66 and 75 years of age, who had received nursing care at a ward for stroke rehabilitation. The data were collected in 2006. Qualitative content analysis of the interviews was carried out.
Findings.  A main theme and five categories, all common to both men and women, were identified. The main theme, to promote recovery of the body, encompassed the categories. There were, however, gender differences in how the nursing care received was experienced. The ways patients experienced nursing care seemed to be linked with their lives as women and men before they had the stroke. Their perceptions are linked with their lives as women and men before they had their stroke. Both men and women will reclaim former abilities but what they perceive to be the goals of nursing care and rehabilitation may differ.
Conclusion.  Nurses need to increase their awareness and knowledge concerning the similarities and gender differences in the experiences and needs of older people, both men and women.