Merja Sallinen

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.

“I'm tired of being tired” – Fatigue as experienced by women with fibromyalgia

Abstract The aim of the study was to explore how fatigue was experienced and explained in life stories of women with a long history of fibromyalgia to gain a deeper understanding of fatigue as a phenomenon. The data was drawn from the narrative interviews of 20 purposively chosen women with fibromyalgia. In the analysis, the ideas of episodic reading and paradigmatic analysis of narratives were used to find recurrent and repeated experiences of fatigue from the data. Five main themes emerged from the data: sleepless nights, physical weakness, loss of mental energy, social withdrawal and overwhelming exhaustion. The narratives indicated that in fibromyalgia, fatigue is a transient, extreme and intensive experience, which causes major disability and distress and which has consequences on every aspect of life. A deeper understanding of the multi-dimensionality of fatigue may help physiotherapists and other health professionals to increase the relevance and effectiveness of the interventions aimed at fibromyalgia patients who complain of fatigue.

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.

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

Abstract 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.

“I just want my life back!” - Men’s narratives about living with fibromyalgia

Abstract 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.

Nurses' perspectives on implementation of safety technology in elderly care - A mixed method study

The demographic change in Finland is fast and is estimated that in 2030 the share of persons aged 65 or more is about 26%. This study aims to develop usability of the technical safety systems in co-operation with the end-users, i.e. staff and the residents as well as to develop an environment that could enhance security and comfort of living of the elderly. A mixed-method approach combining questionnaires and focus group interviews was used to gather the data. Results brought up development ideas and suggestions of safety technology in elderly care, such as need of further technical support and user-centered education. Discussion between the developers and the users of safety technology should be on-going process before and during the implementation of new technology in the housing environment of elderly residents.

THU0351 Negative life events before the disease onset and disease outcome in long term follow up of pain, sleep, fatigue and general well-being

Background There is some evidence that the effects of stressful events experienced in childhood, adolescence and adulthood before the disease onset run a high risk of chronic pain. Several unresolved stressors, the combination of childhood abuse and current post-traumatic stress disorder substantially increase the risk of later pain. Negative life events predict weak outcomes in long term follow-up. Chronic pain as such is stressful and may increase the incidence of negative life events. Objectives The objective of this study is to describe the long term outcomes of pain, quality of sleep, fatigue and general well-being status in juxtaposition to the experienced stressfulness of certain negative events which occurred in the lives of the subjects before the onset of fibromyalgia. Methods The data were gathered by postal inquiry from 93 women with fibromyalgia. The mean age was 54 (SD 8), and the mean number of years after the diagnosis was 11 (SD 3). Pain, quality of sleep, fatigue and general well-being status were measured on a Visual Analogue Scale (VAS) of 100 mm. Questions about negative events 1-3 years before the disease onset were presented in eight areas: conflict with partner, conflict with child, close relative or friend, support for close relative or friend, physical or psychological abuse, sexual assault, disease or accident of close relative, death of close relative or friend, and financial problems. The experience of the stressfulness of the event was measured on the scale 0-3 (no event 0, event with no significantly negative effects 1, event with quite significantly negative effects 2, and event with very negative effects 3). The total scores ranged 0-27. Cronbach’s alpha of the life event measure was 0.72 (95% CI: 0.61 to 0.82). The statistical significance for the hypotheses of linearity was evaluated with generalized linear models with appropriate distribution and link functions. Results The mean sum total score of the life events was 6.2 (range 0-20). The most stressful events were financial problems (mean 1.01, SD 1.14), conflict with partner (mean 0.92, SD 1.02), and conflict with child, close relative or friend (mean 0.86, SD 1.00). The tertiles of negative life experiences differed significantly (p for linearity) in quality of sleep, fatigue and general well-being. At 11 years after the diagnosis, the VAS scores of sleep, fatigue and general well-being were the highest in the group in which the scores of experienced stressful life events were the highest. (Table 1.) Table 1. Pain, quality of sleep, fatigue and general well-being in tertiles of negative live events VAS Tertiles of the experience of the negative life events P-value* I II III Mean (SD) Mean (SD) Mean (SD) Pain, mm 35 (22) 42 (29) 46 (29) 0.073 Sleep, mm 36 (24) 40 (29) 53 (22) 0.002 Fatigue, mm 42 (26) 51 (28) 58 (27) 0.017 General wellbeing, mm 43 (25) 53 (24) 58 (21) 0.005 *P for linearity; adjusted for age and duration of diagnosis. Conclusions Fibromyalgia patients’ economic situations and conflicts with partners have been identified as their key negative experiences. Life situations and resources must be assessed early in the diagnostic process in order to help them cope and solve their problems, thereby minimizing the effects of such problems on the symptoms in the long term. Disclosure of Interest None Declared