Healthcare experiences of fibromyalgia patients and their associations with satisfaction and pain relief. A patient survey.

OBJECTIVES: The etiology of fibromyalgia (FM) is disputed, and there is no established cure. Quantitative data on how this may affect patients' healthcare experiences are scarce. The present study aims to investigate FM patients' pain-related healthcare experiences and explore factors associated with high satisfaction and pain relief. METHODS: An anonymous, online, and patient-administered survey was developed and distributed to members of the Norwegian Fibromyalgia Association. It addressed their pain-related healthcare experiences from both primary and specialist care. Odds ratios for healthcare satisfaction and pain relief were estimated by binary logistic regression. Directed acyclic graphs guided the multivariable analyses. RESULTS: The patients (n = 1,626, mean age: 51 years) were primarily women (95%) with a 21.8-year mean pain duration and 12.7 years in pain before diagnosis. One-third did not understand why they had pain, and 56.6% did not know how to get better. More than half had not received satisfactory information on their pain cause from a physician, and guidance on how to improve was reported below medium. Patients regretted a lack of medical specialized competence on muscle pain and reported many unmet needs, including regular follow-up and pain assessment. Physician-mediated pain relief was low, and guideline adherence was deficient. Only 14.8% were satisfied with non-physician health providers evaluating and treating their pain, and 21.5% were satisfied (46.9% dissatisfied) with their global pain-related healthcare. Patients' knowledge of their condition, physicians' pain competence and provision of information and guidance, agreement in explanations and advice, and the absence of unmet needs significantly increased the odds of both healthcare satisfaction and pain relief. CONCLUSIONS: Our survey describes deficiencies in FM patients' pain-related healthcare and suggests areas for improvement to increase healthcare satisfaction and pain relief. (REC# 2019/845, 09.05.19).

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.

In this article, we present findings from a qualitative study examining how young women experience being long-term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long-term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16-29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Individuals' invisible work continues after epilepsy surgery: A qualitative interview study.

OBJECTIVE: How do persons with epilepsy (PWE) experience their everyday lives after epilepsy surgery? METHODS: Qualitative thematic interviews were conducted with eight PWEs (30 to 60 years old). They were recruited when coming for post-operative control 1 to 5 years after epilepsy surgery. The interviews were transcribed. They were analysed by thematic analysis and inspired by Goffman who examines everyday life activities as a theatre play. RESULTS: Before surgery, a substantial invisible and hidden work of adjustments was performed to prevent seizures, to secure help from others if seizures occurred, and to protect oneself from others' gaze during a seizure. This invisible work continued after surgery even for those who became seizure-free; but now for the purpose of protecting oneself from relapse of epilepsy. From the participants perspective there was no or minor change in daily activities among those not becoming seizure-free after surgery. In contrast, those who became seizure-free enjoyed the freedom to participate in social activities without planning or restrictions. CONCLUSIONS: A striking finding was that daily life after surgery comprises considerably invisible work to protect a social self, and this preventive and protective invisible work continued, although those who became seizure-free were living an ordinary socially healthy life.

Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

Post-exertional malaise (PEM) is commonly recognized as a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and is often used as one of several criteria for diagnosing ME/CFS. In this perspective paper we want to reflect on how PEM is understood, assessed, and evaluated in scientific literature, and to identify topics to be addressed in future research. Studies show that patients use a wide variety of words and concepts to label their experience of PEM in everyday life, and they report physical or mental exertions as triggers of PEM. They also report that PEM may have an immediate or delayed onset and may last from a few days to several months. When standardized exercise tests are used to trigger PEM experimentally, the exacerbation of symptoms has a more immediate onset but still shows a wide variability in duration. There are indications of altered muscular metabolism and autonomic nervous responses if exercise is repeated on successive days in patients with ME/CFS. The decreased muscular capacity appears to be maintained over several days following such controlled exercise bouts. These responses may correspond to patients' experiences of increased exertion. Based on this background we argue that there is a need to look more closely into the processes occurring in the restitution period following exercise, as PEM reaches the peak in this phase.

'It's not just about me': a qualitative study of couples' narratives about home death when one of the partners is dying of cancer.

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples' shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: 'Struggles in an Unknown Terrain' and 'Reliance at the Kitchen Table'. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple's shared biography and the partner's ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples' negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.

BACKGROUND: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. PURPOSE: This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. METHODS: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. RESULTS: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. DISCUSSION: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

Experiences of shifts in physiotherapy for rheumatoid arthritis over time - an autoethnography.

INTRODUCTION: Several shifts in physiotherapy treatment of patients with rheumatoid arthritis (RA) have occurred over time. OBJECTIVE: This paper aims to identify shifts in physiotherapy practice for patients with RA based on the author's work experiences from the 1980s until today at two Norwegian rheumatism hospitals, and to explore why shifts may have happened. METHODS: A narrative was developed by describing events making a difference, categorizing, and ordering them with the help of narrative analysis and a sensitizing analytic lens on discourses. RESULTS: The storyline from the 1980s to approximately the turn of the millennium is called 'Shifts determined mainly by clinical context-driven events' which occurred in response to medical advances and physiotherapists' clinical experiences. These shifts were later justified by physiotherapists' research in the clinical context. The other storyline covers mainly the 2000s and is called 'Shifts increasingly determined by events beyond clinical physiotherapy context.' They include adjustments to further medical advances and implementation of biopsychosocial understanding of disease at the hospital, and to external research-based recommendations, health reforms, and economy. CONCLUSION: These processes have moved physiotherapy practice at the hospital from mainly providing individualized remedial and rehabilitative physiotherapy for the purpose to normalize physical function to an increasing focus on generic health measures for the purposes of health promotion and cardiovascular disease prevention. However, this shift may not fully match the complex needs presented by patients in disease remission with unrelenting fatigue and work inability and those who have multiple functional challenges and comorbidities.

The fragile process of Homecoming - Young women in recovery from severe ME/CFS.

PURPOSE: To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present. METHOD: A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants. RESULTS: The first story describes how one participant made a recovery by testing her body's tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained. CONCLUSION: Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.

Bodies in lockdown: Young women's narratives of falling severely ill with ME/CFS during childhood and adolescence.

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Legitimacy in clinical practice: How patients with chronic muscle pain position themselves in the physiotherapy encounter.

RATIONALE, AIMS & OBJECTIVE: Patients who seek healthcare for long-lasting pain and symptoms without a detectable disease must put in extra work to be taken seriously and gain recognition as a patient. However, little is known about how patients' help-seeking is performed in clinical practice. The aim of the current study was to gain knowledge about the ways in which patients with chronic muscle pain position themselves as help-seekers during their first physiotherapy encounter. METHOD: The material consisted of observation of 10 therapist-patient clinical interviews in primary care clinics and was analyzed using perspectives from discourse theory and the concept of positioning. RESULTS: The study highlights how the patients positioned themselves in continually shift between two discourses: that of disease (considering the patient as an object under study) and that of illness (positioning the patient as an active and participating but also troubled individual). This shifting of position was negotiated in interaction with the therapist: patients' opportunities to position themselves within the discourse of illness were limited by therapists' focus on facts and causal relationships within the discourse of disease. CONCLUSION: Patients with chronic muscle pain seek to establish their legitimacy through the positivistic discourse of medicine and also through their compliance with the moral discourse of the patient as someone active, willing to take responsibility for their own health-and therefore worthy of treatment.

A critical phenomenological investigation in the use of touch as "know how" in practical physiotherapy in primary care with children and adults.

In this article, we examine the interactions between physiotherapists and patients in actual situations, focusing on how touch is expressed, what it may mean and how physiotherapists know (or do not know) when and how to touch. The empirical material is obtained from two Norwegian research projects. In both of them, the first author observed physiotherapeutic practice and conducted interviews with patients (children and adults) and physiotherapists. A phenomenological research approach was applied, and analysis of the empirical data was guided by the concept of bridling, implying adopting a questioning attitude and being open to that which presents itself and exploring its possibilities. Three processed excerpts from the empirical data are presented to illustrate how, in different ways, physiotherapists' expert knowledge about how to relate to and interact with individual patients is put into play and expressed in real physiotherapy encounters. Each excerpt is presented individually, followed by analysis. Our findings reveal aspects of the epistemology of physiotherapeutic practice to be intercorporal and illuminated by the concept and phenomenon of letting the other be.

"A bit of everything": Health literacy interventions in chronic conditions - a systematic review.

OBJECTIVE: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness. METHOD: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers. RESULTS: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. CONCLUSIONS: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions' complexity. PRACTICE IMPLICATIONS: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

A long, winding trajectory of suffering with no definite start and uncertain future prospects - narratives of individuals recently diagnosed with fibromyalgia.

PURPOSE: Fibromyalgia is a contested illness with unknown aetiology and poorly understood development. The present aim is to explore the pre-diagnostic illness trajectory narrated by individuals recently diagnosed with fibromyalgia (FM). METHODS: Individual interviews about the course of the illness were conducted with seven women and three men (age from early 20s to 50s) who had recently been diagnosed with FM. A narrative analysis of what the interviewees told and how the stories were narrated was conducted. RESULTS: The findings are expressed by three storylines. "Strenuous life and alerted body preluding illness" displays a difficult, unsupported life and bodily sensitivity to stimuli. "Recurrent pains unfolding to become a lasting and complex illness" describes individuals pushing themselves to meet social obligations until they come to a full stop. "Diagnosed but still uncertain presence and future" portrays satisfaction with finally being diagnosed with FM and being supported by others, but still there are no solutions as to do about it. CONCLUSIONS: The three storylines portray a long, winding trajectory of suffering starting before the onset of illness, and unfolding illness gradually becoming persistent and overwhelming. Finally, a diagnosis of FM is arrived at, but how the situation will evolve is uncertain.

Bridging troubled water - exploring improvement and patients' experiences using patient-reported outcome measures in physiotherapy: A mixed-method study.

BACKGROUND AND AIMS: Increased use of patient-reported outcomes in health care has been emphasized. Our aim was to use the Patient-Specific Functional Scale (PSFS) to examine improvement in neck pain patients' activity limitations during physiotherapy treatment, with the purpose to explore the patients' experiences of using PSFS. The study illuminates whether and how PSFS can be useful in clinical physiotherapy. METHODS: Six patients participated. A mixed-method study design was applied, triangulating ontological perspectives of realism and phenomenology, quantitative and qualitative methods. Single Subject Experimental Design with PSFS as outcome measure examined changes over time and phenomenological interviews examined its meaningfulness for patients. Patients defined their personal activity limitations due to neck pain and scored difficulties several times, during the physiotherapy treatment period, using PSFS. We used visual analyses of the quantitative data and thematic analyses of the qualitative data. Integration and combination of the results from the two designs are presented in the discussion. RESULTS: In the quantitative analyses, PSFS showed improvement in most activity limitations during treatment. The qualitative analyses revealed that using PSFS required the patient to engage in different bodily awareness processes and handle the dilemma of a possible double function of scoring chosen activities. The mixed findings revealed improved functionality and that the context and the interaction between patient and therapist have a significant influence on the assessment process. CONCLUSIONS: To be able to improve the utilization of PSFS, communication between patients and physiotherapists is of vital importance. When using PSFS, physiotherapists should direct their attention to the importance of interaction as always present and vital in assessments.

Rebuilding a tolerable life: narratives of women recovered from fibromyalgia.

INTRODUCTION: Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain and fatigue condition. Despite extensive research, there is currently no known therapy leading to a cure for FMS. Although studies have reported that some patients can regain their health, little is known about their personal process of becoming well. OBJEVTIVE: This study aimed to explore women's narratives about the process of recovering from FMS. METHODS: The empirical material consists of qualitative interviews of eight Norwegian women who all have previously had, but do not have FMS any more. Inspired by a narrative approach we analyzed their experiences of becoming better with a focus on recovery as a meaning-making process. RESULTS: The findings revealed a recovery process consisting of two intertwined narratives that are mutually nurturing each other. The first narrative telling moments of prompting changes refers to events during the recovery process where women understood themselves and their suffering in new ways and thereby enabled them to act in new ways or take further action. The second narrative a mundane process of rebuilding a tolerable daily life refers to a lasting, mundane everyday process of exploration how they initially should act to avoid becoming worse and, later, to promote improvement. CONCLUSION: Our findings show how the women explain their recovery in terms of overcoming fear of movement, making sense of their symptoms and becoming more active in everyday life. The close analysis reveals a recovery narrative portraying a complex and ambiguous process consisting of small dramas about the efforts trying to rebuild a meaningful life.

Concordance between clinician- and 2016 criteria-based diagnoses of fibromyalgia.

OBJECTIVES: The Fibromyalgia Survey Diagnostic Criteria-2016 (FSD-2016 criteria) were recently recommended for both clinical and research purposes. The present study aims to examine whether there is concordance between clinician-based and FSD-2016 criteria-based diagnoses of FM, and secondly, to examine how the illness severity and physical function relate to the criteria-based diagnosis among patients referred to a rheumatism hospital. METHODS: Participants with a clinician-based diagnosis of FM were included consecutively when referred to a patient education programme for patients with FM. Illness severity was assessed with the Fibromyalgia Survey Questionnaire (FSQ). Based on the FSQ, the fulfilment of the FSD-2016 criteria was evaluated. Physical function was assessed using the Fibromyalgia Impact Questionnaire (FIQ) function scale and self-reported employment status. RESULTS: The sample included 130 patients (84% women) from 20 to 66 years of age. Eighty-nine per cent met the FSD-2016 criteria, and 44% of the patients were fully or partially employed. Great variability in illness severity was seen irrespective of employment status. There was an association between illness severity and physical function (r=0.4, p<0.001). For 95% of the patients, the FSQ illness severity scores classify as severe or very severe, and even for those not fulfilling the diagnostic criteria the scores were moderate and severe. CONCLUSIONS: There was relatively high agreement between clinician- and criteria-based diagnoses. The illness severity overlapped irrespective of different employment status and fulfilment of FSD-2016 criteria.

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe.

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)-COST action 15111-from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

Enabling personal recovery from fibromyalgia - theoretical rationale, content and meaning of a person-centred, recovery-oriented programme.

BACKGROUND: Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients. METHODS: A multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients' illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1-1.5 years. RESULTS: The biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency. CONCLUSION: To our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.

'It takes time, but recovering makes it worthwhile'- A qualitative study of long-term users' experiences of physiotherapy in primary health care.

In several European countries, patients with chronic pain conditions are high consumers of physicians' and physiotherapists' health services in primary health care. This study aimed to explore how patients in a Norwegian context make sense of their long-term use of physiotherapy. Narrative interviews were conducted with six long-term users. The data material was subjected to a narrative analysis with a focus on the stories' content and how health professionals and informants were inscribed in the stories. The stories provide rich and varied information about the informants' experiences with prior and present health services inscribed in their experiences of illness and recovery. The narrative's introduction portrays a shared illness narrative, centered around negative experiences as illustrated by the theme 'A long time searching for explanations and solutions to recover'. The narrative's plot describes a gradually ascending story of recovery where abilities overshadowed disabilities, as the informants are 'Learning their own meaningful ways to proceed'. The narrative has no definite ending, but instead depicts an 'Uncertainty about future and own ability to reverse relapse'. The shared narrative's storyline is that 'It takes time, but recovering makes it worthwhile'.

Patients' experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping mixed methods review.

PURPOSE: The EU COST Action 15111 collaboration on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to assess current research and identify knowledge gaps in Europe. Presently, our purpose is to map the effects of non-pharmacological therapies (NPTs) for ME/CFS, and what patients find important in the treatment process. METHODS: A scoping mixed methods literature review of European studies identified 16 papers fulfiling our inclusion criteria. The quantitative and qualitative studies were synthesized separately in tables. Additionally, extracts from the qualitative studies were subjected to translational analysis. RESULTS: Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals' recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail. CONCLUSIONS: Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients' concerns and evaluation tools reflecting what is essential for patients.