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.

Memory gaps, lost words and crucial mistakes - Men's experiences of cognitive difficulties in fibromyalgia.

OBJECTIVES: The purpose of the study was to explore the impact of perceived cognitive problems on daily life in men with fibromyalgia. METHOD: The data were collected through life-story interviews of eight men with fibromyalgia. Narrative analysis was conducted to create model narratives that comprise the content and storylines across the data. RESULTS: Three model narratives are presented in the findings to describe the scope and severity of the cognitive problems. The participants' experiences of cognitive problems varied from occasional concentration problems to severe and complex difficulties in memory, problem solving and verbal fluency. The impact of these problems on daily life was substantial and overshadowed the participants' domestic life, social relations and work performance. In some cases, maintaining a role in working life was perceived as challenging. DISCUSSION: These patients are usually examined and treated in primary health care settings and the assessment tools and interventions should be applicable in these settings. More research is needed to develop effective interventions that address not only memory but also individual's ability to solve complex problems and to work under pressure as well as the level of verbal fluency, which all are relevant issues in terms of work ability in contemporary society.

'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'.

Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies.

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.

Ethical dilemmas related to the use of safety technology in service house environments.

BACKGROUND: The use of technology in care of older adults has increased rapidly in recent years and is anticipated to increase further in the future. Technological devices and appliances have been developed to promote the safety and independence of older adults living in different settings. However, technology may also be perceived as a threat, and using technology could involve characteristics that may restrict especially patients' autonomy. AIMS AND METHODS: The aim of this study was to explore ethical dilemmas as experienced and expressed by older adults living in service house environment and their family members. The study was carried out in two service house units in Southwest Finland by conducting thematic interviews of service home residents aged 80-92 years (n = 12) and their relatives (n = 5). The interview data were analysed using inductive content analysis to identify similarities and differences across the data. The findings were categorised under three categories: supervision vs. privacy, fear of losing human contact, autonomy and freedom. FINDINGS: The participants appreciated the homely environment they had and preferred increasing the amount of staff over increasing technological surveillance. However, the residents were willing to accept also technological systems and solutions if they strengthened one's feeling of security. Fear of losing human contacts and one's privacy due to implementation technological systems was expressed by the older adults. Both the residents and their relatives emphasised the autonomy of the older adult in decision-making concerning the use of technological services. CONCLUSIONS: In conclusion, thorough discussion about autonomy, freedom and privacy is needed before applying new technologies to service house environments. Possibilities for drafting a 'technological will' where the resident could define under what circumstances technology can be used in his/her case and who can decide about it should be explored in the future.

"I can't have it; I am a man. A young man!" - men, fibromyalgia and masculinity in a Nordic context.

Purpose: Research shows that gender has a substantial impact on the health behaviour such as expression of physical symptoms like persistent pains and aches. However, there is yet little knowledge about the gendered aspect of pain by men who suffer from typical female diseases like fibromyalgia. The purpose of the study was to elucidate the interplay between illness and gender by exploring life-stories of men who suffer from fibromyalgia. Methods: The data were collected through life-story interviews of eight men suffering from fibromyalgia. A narrative methodology for analysis was applied to explore the storytelling and the linguistic and performative aspects of the life-stories. Results: The masculine identity of the participants was re-negotiated by comparisons to other men and life before symptom onset, and by discussing expectations and beliefs of how men should act in contemporary societies. The transition from experiencing a strong, active and reliable body to experiencing a painful, vulnerable and helpless body was perceived as fundamental. Conclusions: Self-management and rehabilitation of fibromyalgia it is not only about learning to manage the symptoms but also about the struggle to find coherence in life through re-constructing gender identity that is acceptable both for the individual and for the community.

"I just want my life back!" - Men's narratives about living with fibromyalgia.

BACKGROUND: Fibromyalgia is characterized by chronic widespread pain and an array of other symptoms. It is less common among men than among women and the results concerning the severity of men's symptoms are contradictory. The purpose of this study was to elucidate the impacts of fibromyalgia on men's daily life and work ability. METHODS: The data were collected through life story interviews of five men with fibromyalgia. RESULTS: The results of a narrative analysis are presented in a form of two model narratives: "Adjusting the life to match the illness" and "Being imprisoned by the pain". The first narrative is a description of finding a balance between the illness and wellness, whereas the second is an account of debilitating symptoms, unsuccessful treatment, and rehabilitation interventions. CONCLUSION: The results suggest that adjusting one's activities may help to manage the symptoms and to support work ability in many cases but for some patients the experience of feeling healthy or pain free might be nothing but a fading memory. Narrative approach is well applicable to rehabilitation of patients with fibromyalgia: an illness narrative may help the patient and professionals to understand the situation better and to set realistic and relevant goals for rehabilitation. Implications for rehabilitation In addition to chronic pain, men with fibromyalgia suffer from daytime tiredness and cognitive challenges that substantially interfere with their work ability and daily functioning. Vocational rehabilitation interventions, including e.g., adjustments of work tasks and hours, should be started early on to support work ability. The results indicate that psychosocial support is needed to improve health related quality of life of patients with severe and complex symptoms, especially if return-to-work is not an option. Men with fibromyalgia seem to lack peer support both in face-to face groups and in on-line groups. "All-male" support groups could be explored in rehabilitation settings in the future. Using a narrative approach in rehabilitation might result in a shared understanding of the patient's situation. This could help the professionals to set more individual, realistic, and relevant goals for rehabilitation, which in turn might improve rehabilitation outcomes.

How to live independently with or without technology?

This qualitative study aims to identify how Finnish elderly, aged 65-82, consider technology as part of their life and how the learning of using technology is happening. Thematic interviews were carried out and transcribed to text. Content analysis was done and common elements were found. The analysis was done in researcher triangulation to enhance the reliability of the data extraction. Two main categories were named: lived life and the role of ICT/ICT AT, ICT support and education. We can conclude that the results showed that there is a need to integrate ICT/ICT AT education into the daily life and rehabilitation of elderly. The most common need to use ICT is to be connected and to be able to follow the society. Also open discussion is needed concerning the divide between older and younger citizens. Based on the results the non-users who don't want to use technology also need to be considered in society by developing new service solutions for all. If being positive towards using technology this study showed that ICT skills can positively affect feeling of self-determination and quality of life.

A conceptual framework related to ICT-AT competence development: The theoretical foundations of ENTELIS.

This paper provides an overview of the construction of a conceptual framework regarding ICT-Assistive Technology (ICT-AT) competence development, designed to gain awareness of the elements involved and to facilitate the understanding and exchange among stakeholders of the ENTELIS (European Network for Technology Enhanced Learning in an Inclusive Society) project. The framework was designed based on the basic principles of Activity Theory, which however have been adapted and adjusted to the project's objectives. Hence, it includes a map of actors and other parameters functioning in a person surrounding "ecosystem", and it allows us to understand and map roles, expectations, barriers, as well as to devise solutions to tackle digital divide. Taking as a starting and central point the person and his/her wish to self-determination and fulfilment (quality of life) and the related needs, it provides a map of how the various concepts and variables interact within the theoretical and methodological perspective of the collection, description and assessment of experiences in ICT-AT education and competences development of persons with disabilities (PwD) of all ages. The conceptual framework represents two interacting learning activity systems: (a) the internal system of the end-user, which includes the end-user and his/her needs, the setting where learning takes place and the other actors involved, and (b) the external system, which embraces the internal system but also wider issues of policy and practice and experiences and 'actors' that contribute to the development and use of ICT and ICT-AT skills in all areas of life. The elements of these systems and their interaction provide the basis for analysing experiences and advancing knowledge relevant for bridging the digital divide.

'I've Been Walking on Eggshells All My Life': Fibromyalgia Patients' Narratives About Experienced Violence and Abuse.

According to earlier research, the prevalence of violence and abuse in the life history of patients with chronic widespread pain and fibromyalgia seems to be high in comparison with other pain patients and healthy controls. The purpose of the present study was to explore how experiences of violence and abuse are expressed and reflected on and how the causes and consequences of violence are interpreted by female patients with a long history of fibromyalgia. The data were drawn from narrative interviews of 11 women who had earlier participated in a fibromyalgia-specific rehabilitation course. The findings are presented through three main themes: loss of self-esteem, physical and mental bruises, and loss of womanhood. The onset of fibromyalgia was perceived as an inevitable result of physical or mental trauma. In conclusion, the narrated life stories indicated that violence is still hidden behind a wall of silence and non-interference in our society. The devastating mental and physical consequences of violence in different forms may be carried by the individual for years, even decades. Understanding any exposure to violence that a patient has endured may help healthcare professionals to understand the individual's health behaviour and any possible reluctance to undergo treatment and rehabilitation. Copyright © 2015 John Wiley & Sons, Ltd.

Technology and active agency of older adults living in service house environment.

PURPOSE: The purpose of the study was to explore whether or not the assistive and safety technology that is currently used in service house environment supports the active agency of the elderly residents. METHOD: Twelve purposively chosen elderly residents were interviewed. The data were analyzed by theory-driven content analysis using the modalities of the agency-model as a theoretical frame. RESULTS: The technological devices and systems partially support the active agency of the residents. Deterioration of their functioning seems to limit the use of devices as well as complicate their learning on how to use these systems. The respondents had only few insights of the possibilities that this technology could offer to them in their daily life and they were not expecting their functioning to improve in the future. The homeliness and intimacy of the environment was highly appreciated. CONCLUSIONS: Although the attitude towards technology was, in general, reserved, technology was seen as one possibility to support active agency. The current technologies seem to be designed from the needs of the organization and not from the needs of the residents. In the future, more emphasis needs to be put on designing individualized devices in cooperation with the users. Implications for Rehabilitation To support independence, autonomy and active agency of the older adults, the technological solutions must be based on perceived needs of the individual and the design should be adaptable to the functional limitations one has. Nursing staff's knowledge about assistive devices and technologies need to be updated on regular bases in order to be able to recommend appropriate devices for the elderly. Taking into account the fact that many older adults have mild to moderate memory problems as well as difficulties with vision and hearing, more attention needs to be paid to didactics, i.e. how the introduction and guidance of the use of new technologies, assistive devices or safety systems is best done with them.

Ethicted (evaluation process model to improve personalised ICT services for independent living and active ageing)--future scenario.

ICT innovations are constantly developed, and there is no lack of elderly customers, as the number of the elderly is dramatically increasing. Elderly are willing to use ICT to increase their own safety and social activity, but they need trust on the reliability, accessibility and other ethical aspects of ICT including the maintenance of privacy and self-determination. Ethical standards for ICT are usually not considered. "Ethicted" characterizes an ICT service or product as ethically evaluated. As a standardized procedure, it will not only increase the acceptability of ICT, but also provide services for ICT developers. In the future scenario, ICT under development should be evaluated by using a process model that is specifically built to find the lacks in ethical aspects. The model would then be tested by end-users, the formal and informal care givers, to receive direct feedback for redeveloping solutions. As final outcomes, there should be standards for ICT in elderly care and a service for ICT developers to utilize the evaluation model. This future scenario work included partners from 6 EU member countries. The combination of academic research and industrial/commercial interest of ICT developers should and can bring new value to assistive ICT for elderly care.

Fatigue, worry, and fear--life events in the narratives of women with fibromyalgia.

In this article we explored narrated life stories of 20 women with a long history of fibromyalgia to reach a deeper understanding of how people interpret the causes and consequences of different life events and illness experiences. Based on narrative analysis, we identified three model narratives that illustrate the different life courses of women with fibromyalgia. In addition, we described a counternarrative that questions fibromyalgia as a chronic disease. In this narrative study, we give insights to the invisible symptoms and unheard experiences that are associated with fibromyalgia and to the ongoing discussion on the etiology and maintenance of fibromyalgia.

Finally heard, believed and accepted--peer support in the narratives of women with fibromyalgia.

OBJECTIVE: The aim of the present study was to analyse how experiences of peer support were described and reflected upon several years after a group rehabilitation intervention. Moreover, we wanted to learn more about what meanings were ascribed to peer support in the narratives of women with a long history of fibromyalgia. METHOD: This was a qualitative study in which narrative life story interviews of 20 women with fibromyalgia were collected and analysed to elicit the impact of peer support in their lives. RESULTS: We identified four main domains of experienced peer support; permission to talk, need of information, reciprocity and self-evaluation through comparison. The meanings ascribed to peer support were mainly positive, although the participants also expressed thoughts about fear of future, hopelessness and mental health issues. CONCLUSIONS: Long-term fibromyalgia patients saw peer support as an impetus to an ongoing process of reconstruction of identity, illness acceptance and coping with fibromyalgia. PRACTICE IMPLICATIONS: In addition to up-dating their knowledge about fibromyalgia and its treatment, long term patients may need arenas where they can share and compare their experiences to those of other patients with a long history of fibromyalgia.

Women's narratives on experiences of work ability and functioning in fibromyalgia.

BACKGROUND: Fibromyalgia is a significant health problem for women of working age. However, little is known about the long-term effects of fibromyalgia in everyday life or on work ability. METHODS: A narrative interview study was conducted to explore the experiences of work ability and functioning of patients with a long history of fibromyalgia. Twenty women, aged 34-65 years, were purposively chosen for the interviews, to reach a wide range of patients with different social and professional backgrounds. RESULTS: Four types of experience concerning work ability were identified in the narratives: confusion, coping with fluctuating symptoms, being 'in between' and being over the edge of exhaustion. Severe pain and fatigue symptoms, combined with a demanding life situation and ageing, seemed to lead to substantial decrease in work ability and functioning over the long term. In the narratives, vocational rehabilitation or adjustments to work tasks were rarely seen or were started too late to be effective. CONCLUSIONS: Exploring the life stories of women with fibromyalgia can reveal the perceived causes and consequences of fibromyalgia related to work ability or disability, which can be utilized in developing client-centred rehabilitation approaches and effective interventions to support work ability and avoid premature retirement in fibromyalgia patients.