Aims and objectivesTo elucidate the experience of fatigue across several long-term illnesses, focusing on the similarities and differences.BackgroundFatigue is common to many long-term illnesses, but it has been studied mainly within the context of a single illness; qualitative studies comparing the experience and its impact on daily life across different long-term illnesses are lacking.DesignQualitative design.MethodsA secondary analysis was conducted of five original interview studies involving 95 persons with ankylosing spondylitis, fibromyalgia, multiple sclerosis or stroke.ResultsSimilarities and differences concerning experiences of fatigue were found across the studied long-term illnesses. All patients expressed the perception of having an unfamiliar body. Fatigue was also commonly expressed as unpredictable, uncontrollable and invisible to others. Differences were related to a constant versus a varying condition, a sudden and an uncontrollable sleepiness, a mutual reinforcement with pain and increased stress sensitivity. A lack of energy and a need for sleep and rest were common experiences, as was the impact on social relationships. There were also similarities regarding how the patients managed their daily life. The search for practical solutions and attitude adjustment differed with the fatigue characteristics. All patients felt a lack of understanding and disbelief from others.Conclusion and relevance to clinical practiceFatigue is commonly expressed by patients with long-term illnesses. Variations in experience are related to the type of diagnosis. The disparity between experiences influences how patients managed and adjusted to the conditions of everyday life. The illness-specific characteristics of fatigue warrant increased clinical awareness and may allow professionals to offer adequate information and establish effective methods of managing the condition. The feeling of invisibility and difficulty describing the experience of fatigue in particular highlights this need.

Therapeutic nurse–patient relationships are considered essential for good nursing practice in psychiatric inpatient care. Previous research suggests that inpatient care fails to fulfil patients' expectations in this regard, and that nurses might experience the reality of inpatient care as an obstruction. The aim of the present study was to explore nurses' and assistant nurses' experiences of good nursing practice in the specific context of psychiatric inpatient care. Qualitative interviews were conducted with 12 skilled, relationship-oriented nurses and assistant nurses in order to explore their experiences with nursing practice related to psychiatric inpatient care. Interviews were transcribed and analysed using an interpretive descriptive approach. Findings describe good nursing practice as a matter of nurses and assistant nurses taking personal responsibility for their actions and for the individual patient as a person. Difficulties in providing dignified nursing care and taking personal responsibility cause them to experience feelings of distress and frustration. Shared values and nursing leadership supports being moral and treating patients with respect, having enough time supports being present and connecting with patients, and working as a part of a competent team with critical daily discussions and diversity supports being confident and building trust. The findings suggest that taking personal responsibility is integral to good nursing practice. If unable to improve poor circumstances, nurses might be forced to promote their own survival by refuting or redefining their responsibility. Nurses need to prioritize being with patients and gain support in shaping their own nursing practice. Nursing leadership should provide moral direction and defend humanistic values.

Living with fibromyalgia (FM) means living with a chronic pain condition that greatly influences daily life. The majority of people with FM are middle-aged women. The aim of this study was to elucidate meanings of pain for women with FM. Fifteen women with FM were interviewed about their pain experiences and a phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that meanings of pain for women with FM can be understood as living with a double burden; living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain. The ever-present pain was described as unbearable, overwhelming, and dominated the women’s whole existence. Nevertheless, all the women tried to normalize life by doing daily chores in an attempt to alleviate the pain. In order to support the women’s needs and help them to feel well despite their pain, it is important that nurses and health care personnel acknowledge and understand women with FM and their pain experiences.

Fibromyalgia (FM) is a common chronic pain syndrome that mostly affects middle-aged women. Our aim with this study was to elucidate meanings of being received and met by others as experienced by women with FM. Interviews with a narrative approach were conducted with 9 women. We analyzed the transcribed interviews with a phenomenological hermeneutical interpretation. The findings revealed two themes: being seen as a malingerer and being acknowledged. Meanings of being received and met by others, as experienced by women with FM, can be understood as a movement between the two perspectives. When they were acknowledged, their feelings of security and trust increased, but the women could not rely on this because others received and met them in such an unpredictable manner.

The researchers focus in this study was to elucidate meanings of feeling well for women with fibromyalgia (FM). We obtained narrative interviews with thirteen women with FM and used a phenomenological-hermeneutic interpretation to analyse the interview texts. Our interpretation of the findings show that for women with FM meanings of feeling well can be understood as having strength to be involved. The women's experiences of feeling well meant being in control, having power, finding one's own pace and feelings of belonging.

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 Read More: http://informahealthcare.com/eprint/hxrQu88eIVBPKf48aBpd/full

Lipedema is a chronic, progressive disease that almost exclusively affects women and often misdiagnosed as obesity or primary lymphedema. Research concerning lipedema is sparse, and there is a lack of studies focusing on women’s experiences of living with the illness. We interviewed fourteen women with lipedema with the aim of describing their experiences of living with lipedema. Our results show that women felt controlled by their body, and were fat-shamed and viewed by others as a person who lacked character. They received unsupportive advice on how to manage from healthcare, and blamed themselves while striving to take responsibility.

Background: A major and complex challenge when trying to support individuals with dementia is meeting the needs of those who experience changes in behaviour and mood. Aim: To explore how a sensor measuring electrodermal activity (EDA) impacts assistant nurses' structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions. Methods: Fourteen individuals with dementia wore a sensor that measured EDA. The information from the sensor was presented to assistant nurses during structured assessments of problematic behaviours. The evaluation process included scorings with the instrument NPI-NH (Neuropsychiatric Inventory-Nursing Home version), the care interventions suggested by assistant nurses to decrease problematic behaviours, and the assistant nurses' experiences obtained by focus group interviews. Results: The information from the sensor measuring EDA was perceived to make behavioural patterns more visual and clear, which enhanced assistant nurses' understanding of time-related patterns of behaviours. In turn, this enhancement facilitated timely care interventions to prevent the patterns and decrease the levels of problematic behaviour. Conclusion: With the addition of information from the sensor, nursing staff could target causes and triggers in a better way, making care interventions more specific and directed towards certain times throughout the day to prevent patterns of problematic behaviours.

Persons with dementia face several challenges in daily life and the consequences of the disease can be a threat to live a dignified life. Martha Nussbaum has developed the concept of dignified life for people with dementia and suggests the capability approach focusing on what people are able to do and to be in certain agreed-upon areas. Particularly, affiliation and practical reasoning are crucial to preserve a dignified life. For people with dementia the consequences of the disease may affect their opportunities to achieve these vital human capabilities. Digital resources have been shown to have potential to support people in their everyday life and provide them with the means necessary to participate in all aspects of life. In this study, our purpose is to describe digital resources aimed at supporting opportunities for affiliation and practical reasoning among people with dementia. Specifically, we wanted to give an overview of the existing digital resources used to support affiliation and practical reasoning and how such resources affect opportunities for people with dementia. A framework for scoping reviews was used and literature searches were conducted in PubMed and Scopus. The results, by providing a deep analysis of digital resources for affiliation and practical reasoning, highlight the need for a clearer direction towards the very core of vital aspects in a dignified life. Hence, there is a need for a framework that can guide attention towards crucial aspects for supporting a dignified life when developing and evaluating digital resources. 

The ability of nursing staff to assess and evaluate behavioral and psychological symptoms of dementia (BPSD) to determine when intervention is needed is essential. In order to assist with the assessment process, the current use of the Neuropsychiatric Inventory Nursing Home version (NPI-NH) is internationally accepted. Even though the NPI-NH is thoroughly validated and has several advantages, there are also various challenges when implementing this system in practice. Thus, the aim of this study was to explore clinical reasoning employed by assistant nurses when utilizing the NPI-NH as a tool to assess frequency and severity of BPSD in individuals with advanced dementia.

Twenty structured assessment sessions in which assistant nurses used the NPI-NH were audio recorded and analyzed with a discourse analysis focusing on the activities in the communication.

Four categories were identified to convey assistant nurses' clinical reasoning when assessing and evaluating BPSD using the NPI-NH: considering deteriorations in ability and awareness, incorporating individual and contextual factors, overcoming variations in behaviors and ambiguous formulations in the instrument, and sense-making interactions with colleagues.

The NPI-NH served as a supportive frame and structure for the clinical reasoning performed during the assessment. The clinical reasoning employed by assistant nurses became a way to reach a consensual and broader understanding of the individual with dementia, with the support of NPI-NH as an important framework.

Aims and objectives

To explore how Martha Nussbaum's approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes.

Background

Challenges experienced when supporting people with advanced dementia who express problematic behaviours include understanding their needs and ensuring a dignified life for them.

Design and methods

Data were gathered using an ethnographic approach based on participatory observation. Nussbaum's capability approach was then used as a framework for the analysis. Four women diagnosed with advanced dementia who also expressed problematic behaviours were recruited from a nursing home in Northern Sweden. The data collection was performed during 2015.

Findings

Individuals with advanced dementia had difficulties in participating in the planning of their lives and achieving the human capability of practical reasoning. They were also at risk of being placed outside the social group, thus hindering them from attaining the human capability of affiliation. A dignified life for individuals with advanced dementia requires nursing staff to be present and to provide adapted support to ensure that the individual can actually pursue human capabilities.

Conclusion

Creating opportunities for the human capabilities of practical reasoning and affiliation is essential as they permeate all other human capabilities. For these individuals, it was crucial not only to create opportunities for human capabilities but also to attend to their expressions and needs and to guide and steer them towards a dignified life.

Implications for Practice

The normative structure of the capability approach described by Nussbaum can ensure that nursing staffs move beyond fulfilling patients’ basic needs to consider other capabilities vital for a dignified life.

In order to describe how women with osteoporosis strive to maintain daily life we interviewed11 women using a reflective lifeworld approach based on phenomenological analysis.Osteoporosis is a major public health concern in the Western world, and is predominantamong women. Our findings indicated that meanings of striving to maintain daily life implya belief in oneself and one’s own capabilities. The women expressly speak out for themselvesas a way of finding reconciliation without giving in to the illness. Women with osteoporosisexpect to gain support early in the course of their illness. They require advice on how tomanage the disease as well as support for striving to maintain daily living. Therefore, it iscrucial that the women not only are given information about the disease. Equally important isto establish continuity in healthcare encounters, and that health care offers support foundedin the women’s lived experiences with focus on their capacities.

Objective: Patient participation is said to be an important factor for patients to experience satisfaction and quality with hospital care. Still, little is known about what participation actually means for patients in the specific context of hospital settings. Therefore, the aim of this study was to elucidate meanings of participation as narrated by patients.

Method: Narrative interviews were conducted during the Autumn of 2013 until the Spring of 2014 and then phenomenological hermeneutically interpreted. In this study, we suggest that the phenomenon of participation in hospital care is experienced by the patient when being a co-creator and seen as an important person in a trustful context.

Results: The results illustrate that an experience of an open, cooperative and coherent environment invites and contributes to participate despite being in a vulnerable situation. The study highlights the importance of responding to each patient as a person, who sometimes has a need to participate actively and sometimes wants to hand over and assume the role of patient in the hospital care setting.

Discussion: Meanings of participation among patients in hospital care can be understood as a phenomenon experienced when being an involved co-creator and seen as an important person in a trustful context. In this study, as well as in previous research it is obvious that participation in hospital care concerns more than being involved in decision-making and receiving information.

The aim of this licentiate thesis was to describe the meaning of women's experiences of living with multiple sclerosis (MS). This licentiate thesis focuses specific on the women's experiences of daily life (I) and the experience of fatigue (II). Narrative interviews were conducted with 10 women living with MS and the interviews were analysed with a phenomenological hermeneutic interpretation. This licentiate thesis proposes that the meaning of living with MS for women can be seen as living an everyday life defined by the body, which imposes living with a restrained freedom in the same time as a feat for freedom in everyday life exists. The constraints of freedom in everyday life, involves the body, relations to others and not being able to involve in everyday life in a desired way. Despite the demanding body which directs the women's life they choose to involve in everyday life instead of withdraw. While the women's experience of freedom is held back the women seam to feat for an own inner freedom, which is used to approach life and meet the demands of illness. The relationship between this inner freedom and the restrained freedom means a feat for freedom in order to meet the conditions that MS brings into the women's everyday life.

The aim of this doctoral thesis was to describe meanings of women's experiences of living with multiple sclerosis (MS). It focuses specifically on the women's experiences of daily life (I), the experience of fatigue (II), experiences of feeling well (III) and experiences of treatment (IV). Narrative interviews were conducted with 25 women living with MS and the interviews were analyzed from a phenomenological hermeneutic interpretation.For women with MS, living with an unrecognizable body meant that the deterioration of their bodies had become clear and served as a hindrance in daily life. The experience of fatigue seemed to mean that the body instead of working as an implement in order to manage daily life had become an enemy. These experiences included bodily changes, which were evident to others, and imposed feelings of being met in a different way. The ill body threatens the women's dignity and they expressed being avoided by others as hurtful. Despite the fact of all aspects of daily life are being affected by illness, the women with MS nevertheless do find ways to experience feeling well. Feeling well, for women with MS can be understood as finding a pace where daily life goes on and the illness is not the dominant experience.This thesis suggests that meanings of women's experiences of living with MS can be comprehended as a movement between the two dimensions of having a value and feeling unimportant to others. In the dimension of having a value, feeling well is brought forward, meanwhile the dimension of feeling unimportant to others, implies suffering in the daily lives of women with MS. For these women recognizing oneself as valuable and sharing an understanding are important in order to feel dignified in daily life and to experience feeling well.

AIM: This paper reports the findings of a study that aimed to elucidate the meaning of fatigue for women with multiple sclerosis (MS). BACKGROUND: Living with chronic illness can involve giving up usual activities. MS is a chronic autoimmune disease of the central nervous system. Fatigue is a common experience among people with MS; however, little is known about the meaning of fatigue experienced by women with this condition. METHOD: Ten women with MS were interviewed about their experience of fatigue. A phenomenological hermeneutic method influenced by Ricoeur was used to interpret the transcribed interviews. FINDINGS: The findings were presented in two major themes with five subthemes; experiencing the body as a barrier and experiencing a different absence. Fatigue seemed to give rise to an experience of being absent and divided into two parts. This also led to a feeling of not being able to participate in the surrounding world. The feeling of being an outsider and lacking the ability as a healthy person is interpreted as a form of suffering. Although the fatigue had a great impact on the women's daily life, the women still hoped for some relief. Fatigue seemed to imply that instead of working as an implement to manage in the world the body has become an enemy of survival. CONCLUSION: This study highlights the importance for nurses of understanding how women with MS experience fatigue, which is a prerequisite for communication based on a shared understanding. This awareness would enhance nurses' opportunities to alleviate suffering. More research is needed to investigate what kinds of interventions can help these women to manage their everyday lives and to maintain a sense of normality despite their fatigue and illness. Such interventions should be subject to empirical evaluation research.

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated

We conducted a qualitative inquiry to describe the meanings of feeling well as experienced by women with Parkinson's disease. Nine women were interviewed and we analysed the interviews using a reflective lifeworld approach based on phenomenological epistemology. We present the analysis as five constituents: the body as unnoticed; being able to move on; feeling joy by being connected; finding peace and harmony; and being the director of one's own life. Our findings can be used to understand and promote well-being among women with Parkinson's disease. In care meetings, knowledge about the lived and experienced health processes supports the women's striving to not let illness dominate their experience of daily life.

In order to elucidate meanings of being received and met by others as experienced by women with multiple sclerosis (MS) we conducted a qualitative inquiry. We interviewed 15 women with MS and analysed the interviews with a phenomenological hermeneutic interpretation. The findings were presented in two themes: experiencing oneself as a valuable person and experiencing oneself as diminished. Meanings of being received and met by others, as experienced by women with MS, can be understood as containing two dimensions where treatment from others can mean recognising oneself through confirmation, as well as being ignored due to missing togetherness with others.

In research concerning multiple sclerosis (MS), the factors that impact on people's well-being and quality of life have been studied, but little has been written about what it means to feel well for women with MS. Therefore, in this study our aim was to describe meanings of feeling well for women with MS. We interviewed 15 women with MS, and a phenomenological hermeneutic interpretation was utilized to analyze the interviews. Through this study it can be understood that finding a pace where daily life goes on means that women with MS feel well when the illness is kept in check and is not the dominant experience. The findings of this study can be used to confirm women's experiences of feeling well, despite living with the consequences of MS. Health care professionals will find the results of this study useful when they reflect on and formulate the care of women with MS when attempting to support the latter's desire to feel well in their daily lives.

The existing knowledge of women’s experiences of living with Parkinson’s disease and fatigue is limited. To gain first-hand knowledge, we interviewed 11 women using a phenomenological hermeneutic interpretation. The results indicate that the familiar daily routines of women with Parkinson’s disease had changed in the sense that their bodily attachment to the world had been altered. The body no longer provided smooth access to the surrounding world; rather, the body served as a barrier to daily living. In practice, understanding this barrier can be significant in recognizing how to create positive conditions that support the women’s experiences and how to formulate their care in congruence with their needs.

The aim of this study was to describe female patients' experiences of dissatisfaction with healthcare. People who have been treated with dignity during healthcare encounters are more prone to report better adherence to treatment and higher satisfaction with their care. Good quality care is commonly described as individualized and related to individual needs. This study has a qualitative approach, as the aim was to describe female patients' experiences of dissatisfaction with healthcare from a first person perspective. A purposive sample of fourteen women was interviewed about their experiences of dissatisfaction with healthcare. The interviews were subjected to a qualitative content analysis. The findings show that the women were treated with indifference when they were being withheld information, felt distrusted, and when they were treated badly they did not receive an apology. The findings also show that the women experienced that they did not feel safe when they had no one liable to turn to within the healthcare when the encounter did not correspond to the women's needs and expectations. The women's experiences of being withheld explanations can be seen as a violation of their dignity and a hidden suffering from care. In conclusion, the study shows the importance of receiving a personal explanation after filing a complaint about healthcare and recommends that clinics that receive a complaint from a patient should contact that patient and provide an individualized explanation

Aims and objectivesThe aim of this study was to elucidate meanings of encounters for patients with long-term illness within the primary healthcare setting.BackgroundGood encounters can be crucial for patients in terms of how they view their quality of care. Therefore, it is important to understand meanings of interactions between patients and healthcare personnel.DesignA phenomenological hermeneutic method was used to analyse the interviews.MethodsNarrative interviews with ten patients with long-term illness were performed, with a focus on their encounters with healthcare personnel within the primary healthcare setting. A phenomenological hermeneutical approach was used to interpret the interview texts.ResultsThe results demonstrated that patients felt well when they were seen as an important person and felt welcomed by healthcare personnel. Information and follow-ups regarding the need for care were essential. Continuity with the healthcare personnel was one way to establish a relationship, which contributed to patients' feelings of being seen and understood. Good encounters were important for patients' feelings of health and well-being. Being met with mistrust, ignorance and nonchalance had negative effects on patients' perceived health and well-being and led to feelings of lower confidence regarding the care received.ConclusionsPatients described a great need to be confirmed and met with respect by healthcare personnel, which contributed to their sense of togetherness. Having a sense of togetherness strengthened patient well-being.Relevance to clinical practiceBy listening and responding to patients' needs and engaging in meetings with patients in a respectful manner, healthcare personnel can empower patients' feelings of health and well-being. Healthcare personnel need to be aware of the significance of these actions because they can make patients experience feelings of togetherness, even if patients meet with different care personnel at each visit.

Good encounters are fundamental for good and professional nursing care, and can be described as treating patients with respect and protecting their integrity and autonomy. This study describes district nurses' views on quality of healthcare encounters in primary healthcare. A purposive sample of 27 district nurses participated in five focus group interviews. The focus groups interviews were digitally recorded and transcribed verbatim. The interview texts were analysed using a thematic content analysis. The analysis resulted in four themes, including being aware of the importance and difficulties during encounters, being the patient's advocate, being attentive to the unique person and being informed when a meeting turned out poorly. The results show that district nurses believed that encounters formed the basis of their work and it was vital for them to be aware of any difficulties. District nurses found that acting in a professional manner during encounters is the most significant factor, but this type of interaction was sometimes difficult because of stress and lack of time. The district nurses considered themselves to be the patients' advocate in the healthcare system; in addition, the acts of seeing, listening, believing and treating the patient seriously were important for providing good quality care. If a poor encounter occurred between the district nurse and the patient, the district nurses found that it was necessary to arrange a meeting to properly communicate what problems arose during the interaction. The district nurses highlighted that providing an apology and explanation could improve future encounters and establish a better nurse–patient relationship. In conclusion, this study shows the importance of confirming and respecting patients' dignity as the fundamental basis for a good quality encounter in primary healthcare