Experiences of facilitators and barriers for fulfilment of human needs when living with restless legs syndrome: a qualitative study.

PURPOSE: Restless Legs Syndrome (RLS) is a widespread condition that affects sleep leading to daytime sleepiness, depression, and reduced quality of life. This study aims to determine and describe how patients with RLS experience their everyday life, with a focus on facilitators and barriers related to Maslow's hierarchical theory of human needs. METHOD: Semi-structured interviews were analysed with qualitative content analysis resulting in facilitators and barriers affecting the fulfilment of the five human needs. RESULTS: Addressing RLS symptoms through medications and a quiet sleep environment fulfils psychological needs. Control over RLS symptoms, engagement in activities, trust in treatments, and social support meet safety and security needs. Social inclusion, close relationships, and meaningful interactions fulfil a sense of belongingness and love needs despite RLS. Competence in managing RLS, effective self-care strategies, confident communication, and trust-building support esteem needs. Finally, comprehensive understanding through person-centred interventions and coping fulfils the self-actualization needs in managing RLS. CONCLUSION: Holistic and person-centred interventions, including facilitators for the fulfilment of physiological, psychological, and social needs could help healthcare professionals to provide holistic care.

Older adults' experiences of participation in daily activities in Swedish assisted living.

BACKGROUND: According to Swedish law, older adults in Sweden should be able to live a good, safe, and independent life with social and healthcare provided, based on their individual needs. In assisted living in Swedish eldercare the environment affects the older adults' ability to participate in decision-making and strengthens their ability to feel meaningfulness. The ability of staff working in social and healthcare to invite older adults to participate varies. It is important to examine how older adults perceive their situation, as caregivers in eldercare tend to focus on routine work and experience difficulties in meeting the individual needs of older adults. The aim of this study was to explore how older adults in assisted living experienced participation in daily activities. METHODS: A qualitative interview study was conducted in two municipalities in the western part of Sweden. An exploratory and inductive design was used. Individual interviews were conducted with 11 older adults living in two different assisted living facilities. The data were analysed using thematic analysis. RESULTS: The interviews resulted in three themes: Being involved, Sense of well-being, and Influenced by the context. The older adults' experiences of participation were interpreted as feelings of being involved in daily life activities, and how they felt involved in their own care and nursing. Participation created prerequisites for well-being. Sense of well-being could be related to feelings of security and social community. The organisation and work environment of the healthcare staff had a great impact on their ability to increase the participation of the older adults. The older adults were aware of the everyday work situation of the providers of social and healthcare and were Influenced by the context. DISCUSSION/CONCLUSION: Important conditions for a good quality of life and participation for the older adults are to be treated with respect, receive information, and be able to choose. The older adults expressed several good ideas for improvements and a willingness to be involved in the development of the organisation at different levels. It is essential to invite older adults in assisted living to participate in the design of care and nursing.

Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study.

OBJECTIVES: Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding. METHODS: A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin. RESULTS: Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support. DISCUSSION: The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.

The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD. METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke. RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life. CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.

Women with lipoedema: a national survey on their health, health-related quality of life, and sense of coherence.

BACKGROUND: Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema. METHODS: We conducted a national cross-sectional study using an online survey assessing sociodemographic data, lipoedema characteristics, symptom severity, comorbidities, HRQOL (RAND-36), and SOC (SOC-13). In total, 245 women with lipoedema, recruited from all Lipoedema Association groups in Sweden, participated. Data were compiled with descriptive statistics, and mean differences between groups were analysed by using parametric and non-parametric tests. RESULTS: Moderate and severe leg heaviness, pain, numbness, cold skin, feeling cold, easy bruising, and sleep problems were found to occur in all lipoedema stages. Moreover, almost all participants reported having comorbidities. Worse physical health and most substantial limitations in daily life were reported among women with the most progressive lipoedema (i.e., stage 3). Social and emotional functioning and SOC were found to be, on the other hand, primarily related to respondents' sociodemographic data and their ages at lipoedema onset. Even though approximately 70% of the women had experienced lipoedema onset before age 30, only three (1.6%) had been diagnosed by a healthcare professional before that age. CONCLUSION: Having lipoedema is associated with several health problems and a lower HRQOL. In addition, the extent of delay in diagnosis within this sample indicates that many women with lipoedema are often underdiagnosed and are left without support from healthcare. These findings call for the need for greater attention on lipoedema. Moreover, further studies on how women with lipoedema manage their health and symptoms, as well as on their experiences of healthcare services and lipoedema treatments, are needed.

Patients' Experiences of Self-Administered Electrotherapy for Spasticity in Stroke and Cerebral Palsy: A Qualitative Study.

OBJECTIVE: To explore patients' experiences of a self-administered electrotherapy treatment for muscle spasticity in cerebral palsy and stroke; the Exopulse Mollii Suit®. DESIGN: Qualitative design with an inductive approach Subjects: Fifteen patients with spasticity due to stroke or cerebral palsy, participating in a previous randomized controlled trial evaluating the treatment concept. METHODS: Information letters were sent to all potential participants (n = 27) in the previous study. Semi-structured interviews (21-57 min) were carried out with all subjects who volunteered (n = 15), administered by an experienced interviewer who was not involved in the previous study. Transcribed interviews were subject to content analysis. RESULTS: The 5 categories that emerged from the content analysis were "New method gives hope", experiences related to "Using the assistive technology", "Outcome from training with the assistive technology", "The assistive technology" and "Taking part in the study". Respondents felt hopeful when included in the previous study, motivated when experiencing a treatment effect, and disappointed when not. CONCLUSION: The qualitative approach used in this study elicited complementary information that was not evident from the previous randomized controlled trial. This included statements regarding increased mobility, reduced spasticity, reduced use of medication, and problems related to using the treatment concept.

Next of kin's experiences of registered nurses' leadership close to older adults in municipal home care in Sweden: an interview study.

BACKGROUND: Next of kin to older adults over 65 years in municipal home care are concerned whether their older adults' needs are being met. In municipal home care, the registered nurses' leadership is important and complex, entailing multi-artist skills involving the older adults and their next of kin. Yet, little is known about next of kin's experiences of registered nurses' leadership. Thus, the aim of this study was to explore next of kin's experiences of registered nurses' leadership close to older adults in municipal home care. METHODS: Individual telephone interviews were conducted with next of kin (n = 11) of older adults from April to September 2020 in two municipalities in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The results are presented with the theme, registered nurses do what they can, including two categories, interaction and competence, and the subcategories, relationship, communication, availability, responsibility, team leadership and cooperation. Registered nurses' leadership was experienced as a balancing act between their commitments and what they were able to achieve. CONCLUSIONS: Next of kin's experiences of registered nurses' leadership can contribute knowledge that will strengthen and prepare registered nurses for their leadership roles. This knowledge can support the development of policies for organisational preconditions that ensure quality and safe care to older adults in municipal home care.

'My registered nurse': Older people's experiences of registered nurses' leadership close to them in community home care in Sweden.

AIM: To explore older people's experiences of registered nurses' leadership close to them in community home care. INTRODUCTION: In Sweden and throughout the world, the number of people 65 years and older is increasing. While older people are living for more years, living longer can bring more diseases and disabilities, which might lead to the need for home care. Registered nurses are responsible for older people's care needs in their leadership in community home care; this is a part of their professional role as registered nurses, and it implies that they must be multi-artists. DESIGN: An explorative and inductive design was used in two communities in western Sweden. METHODS: Individual interviews were conducted with older people (n = 12) with at least one year of experience with community home care. Data were analysed using qualitative content analysis. RESULTS: The results are presented in the theme 'my registered nurse', including five categories - relationship, professional competence, nursing interventions, coordination and collaboration and organisation - and 15 sub-categories. CONCLUSIONS: These findings are based on older people's own experiences. This is specific, as the phenomenon of the RNs leadership is rarely explored from the perspective of older people. IMPLICATIONS FOR PRACTICE: There is a need for organisations to create more opportunities for older people to have their own registered nurses leading close to them. This is because registered nurses have specific competences for meeting older people's individual needs and involving them as competent partners in satisfying their care needs.

Registered nurses' experiences of information technology use in home health care - from a sustainable development perspective.

BACKGROUND: The work of registered nurses in home health care is complicated and extensive, and information technology (IT) is used in everyday activities. Coordination between care and resource efficiency is important. There is a wealth of information that supports the notion of sustainable development, but what sustainable development means from the perspective of the registered nurse in home health care when using IT is limited. The term "sustainable development" is not clearly defined and is poorly researched in nursing. Sustainable development in this study includes the ecological, economic, social, technical and ethical dimensions. The aim of this study was to describe registered nurses' experience of IT use in home health care through a sustainable development model. METHODS: This study was conducted using ten semi-structured lifeworld interviews with registered nurses. The method employed was a qualitative content analysis with a deductive approach. The deductive approach consisted of a model of sustainable development. RESULTS: Analysis of the interviews and the model of sustainable development provided categories: using IT from an ecological dimension, the registered nurses experienced reduced consumption and damage to the environment; using IT in the economical dimension, saving of time and resources was experienced; the use of IT affected social aspects such as the work environment and patient safety, and positive consequences, such as accessibility, were also mentioned; using IT from a technical dimension was characterized by the nurse's attitude towards it - the registered nurses felt it improved the quality of care and gave users an overview of the organization; and from an ethical dimension, the registered nurses expressed the need for IT to be adaptable to the patient's well-being and indicated that more awareness of risks in the care meeting may be needed. CONCLUSION: The findings are discussed based on the synergies and conflicts that arise between the different dimensions of sustainable development. IT intertwines and overlaps with, and within, the environment, economy, society, technology and ethics. Registered nurses in home health care want to conduct good and safe care, while using IT could benefit patients.

What implies registered nurses' leadership close to older adults in municipal home health care? A systematic review.

BACKGROUND: Registered nurses are key figures in municipal home health care for older adults. Thus, registered nurses' leadership is crucial to a successful and preventive care process as well as a supportive organization in order to achieve safe care. However, there is limited research on what registered nurses' leadership implies close to older adults in municipal home health care. Thus, the aim is to compile and critically evaluate how international research results describe registered nurses' leadership close to older adults in municipal home health care. METHODS: A systematic literature review was performed in accordance with a qualitative research study. The main search was conducted on 20 April 2018. The review was reported according to the PRISMA guidelines and is registered in the PROSPERO database (ID# CRD42019109206). Nine articles from PubMed and CINAHL meet the quality criteria. A synthesis of data was performed in four stages according to qualitative research synthesis. RESULTS: Ten themes describe what registered nurses' leadership close to older adults in municipal home health care entails: trust and control; continuous learning; competence through knowledge and ability; nursing responsibility on an organizational level; application of skills; awareness of the individual's needs and wholeness; mutual support; mutual relationships; collaborating on organizational and interpersonal levels; and exposure to challenges. CONCLUSIONS: Registered nurses leading close to older adults in municipal home health care implies being multi-artists. Nursing education, including specialist education for registered nurses, should prepare individuals for their unique and complex leadership role as a multi-artist. Municipal employers require knowledge about what registered nurses' leadership implies in order to create adequate conditions for their leadership objectives to achieve safe care. Further research is warranted to explore registered nurses' leadership close to older adults in municipal home health care from different perspectives, such as older adults and next of kin.

Managers' experiences of ethical problems in municipal elderly care: a qualitative study of written reflections as part of leadership training.

Background: Managers in elderly care have a complex ethical responsibility to address the needs and preferences of older persons while balancing the conflicting interests and requirements of relatives' demands and nursing staff's work environment. In addition, managers must consider laws, guidelines, and organizational conditions that can cause ethical problems and dilemmas that need to be resolved. However, few studies have focused on the role of health care managers in the context of how they relate to and deal with ethical conflicts. Therefore, the aim of this study was to describe ethical problems experienced by managers in elderly care. Methods: We used a descriptive, interpretative design to analyze textual data from two examinations in leadership courses for managers in elderly care. A simple random selection of 100 out of 345 written exams was made to obtain a manageable amount of data. The data consisted of approximately 300 pages of single-spaced written text. Thematic analysis was used to evaluate the data. Results: The results show that managers perceive the central ethical conflicts relate to the older persons' autonomy and values versus their needs and the values of the staff. Additionally, ethical dilemmas arise in relation to the relatives' perspective of their loved one's needs and preferences. Legislations, guidelines, and a lack of resources create difficulties when managers perceive these factors as conflicting with the care needs of older persons. Conclusion: Managers in elderly care experience ethical conflicts that arise as unavoidable and perennial values conflicts, poorly substantiated values, and problematic organizational conditions. Structured approaches for identifying, reflecting on, and assessing ethical problems in the organization should therefore be implemented.

To live a life with COPD - the consequences of symptom burden.

Background: Chronic obstructive pulmonary disease (COPD) is a prevalent illness that, due to its symptoms and treatment, entails a significant burden for the affected person, and his/her family, health care and private finances. Today, knowledge and understanding are sparse regarding COPD-affected persons' own lived experiences and about the symptom burden and its effect on their daily life. Due to this knowledge gap the aim of this study was to identify and describe the symptom burden and its effect on daily life in people with COPD, based on their own lived experiences. Subject and method: Eleven males and 14 females in GOLD stages III and IV, in an age range of 58-82 years, were interviewed. An interview guide was used to direct the face-to-face interviews. Data was analyzed with thematic analysis following the six steps according to Braun and Clarke. Results: The results highlighted one theme: an altered everyday life. The altered everyday life leads to a need for support to handle everyday life and for different strategies to live as desired. Persons with COPD need to take each day as it comes and their life is not easy to plan since it depends on how they feel from day to day. Life is handled with several strategies such as breathing techniques, and ways to take care of the home and garden as well as the emotions. Support from the next of kin, society and the health care service is important. Conclusion: This study provides the insight that persons with COPD in stages III and IV have an altered life caused by the symptom burden. They must struggle with strategies to handle everyday life. There is a need of support from the next of kin and society to facilitate daily living, but this support needs to be well-balanced.

Nurses' competencies in home healthcare: an interview study.

BACKGROUND: Nurses working in Home healthcare (HHC) are facing major challenges since more advanced care and treatment are increasingly being carried out in patients' homes. The aim of this study has been to explore how nurses experience their competencies in HHC situations. METHODS: This study has a qualitative and explorative design. Ten nurses were interviewed and data was analyzed using content analysis. RESULTS: The themes "Being a capable nurse", "Being a useful nurse" and "Being a subordinate and dependent nurse" were identified. Nurses want to be capable of taking care of patients, to develop their competencies and to perform their duties in the way required. They also want their work to be useful and to provide good and safe HHC. Finally, nurses want to improve HHC care by applying their competencies. Simultaneously, they are subordinate and dependent in relation to their manager and also dependent upon their manager's interest in encouraging nurses' competence development. CONCLUSIONS: Nurses in HHC are responsible for many seriously ill patients and they want to contribute to good and safe patient care. To maintain patient safety, reduce the risk for burnout and staff turnover as well as to contribute to a sustainable development of the work, strategies for transferring competencies between nurses and efforts for competence development are needed.

Prerequisites for sustainable care improvement using the reflective team as a work model.

Several work models for care improvement have been developed in order to meet the requirement for evidence-based care. This study examines a work model for reflection, entitled the reflective team (RT). The main idea behind RTs is that caring skills exist among those who work closest to the patients. The team leader (RTL) encourages sustainable care improvement, rooted in research and proven experience, by using a lifeworld perspective to stimulate further reflection and a developmental process leading to research-based caring actions within the team. In order to maintain focus, it is important that the RTL has a clear idea of what sustainable care improvement means, and what the prerequisites are for such improvement. The aim of the present study is, therefore, to explore the prerequisites for improving sustainable care, seeking to answer how RTLs perceive these and use RTs for concrete planning. Nine RTLs were interviewed, and their statements were phenomenographically analysed. The analysis revealed three separate qualitative categories, which describe personal, interpersonal, and structural aspects of the prerequisites. In the discussion, these categories are compared with previous research on reflection, and the conclusion is reached that the optimal conditions for RTs to work, when focussed on sustainable care improvement, occur when the various aspects of the prerequisites are intertwined and become a natural part of the reflective work.

The importance of 'approaching' older people: a grounded theory.

AIMS AND OBJECTIVES: The aim of this study was to identify and describe the ethical values in caring encounters as experienced by older patients in their daily interaction with nurses in wards for older people. BACKGROUND: Ethical values and morals are important aspects that influence the quality of care. METHODS: Empirical observational study including follow-up interviews. Twenty-two older patients participated voluntarily in this study. Constant comparative analysis, the core foundation of grounded theory was used. RESULTS: Five categories: being addressed, receiving respect, desiring to participate, increasing self-determination and gaining self-confidence formed the bases for the core category. APPROACHING: Approaching concerns how people become closer to each other in a physical space. It also includes how people become closer to each other in a dialogue, involving verbal or bodily communication. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: Approaching indicates the ethical values that guide nurses in their caring encounters with older patients. These values are noted by the patient and have an individual value as well as leading to improved quality of their care. The older patient will be confident and satisfied with the caring encounter if the desired components in the nurse's approaching are exhibited.

Corroborating indicates nurses' ethical values in a geriatric ward.

The aim of the study was to identify nurses' ethical values, which become apparent through their behaviour in the interactions with older patients in caring encounters at a geriatric clinic.Descriptions of ethics in a caring practice are a problem since they are vague compared with the four principles of autonomy, beneficence, non-maleficence, and justice.A Grounded Theory methodology was used. In total, 65 observations and follow-up interviews with 20 nurses were conducted, and data were analysed by constant comparative analysis.THREE CATEGORIES WERE IDENTIFIED: showing consideration, connecting, and caring for. These categories formed the basis of the core category: "Corroborating." In corroborating, the focus is on the person in need of integrity and self-determination; that is, the autonomy principle. A similar concept was earlier described in regard to confirming. Corroborating deals more with support and interaction. It is not enough to be kind and show consideration (i.e., to benefit someone); nurses must also connect and care for the older person (i.e., demonstrate non-maleficence) in order to corroborate that person.The findings of this study can improve the ethics of nursing care. There is a need for research on development of a high standard of nursing care to corroborate the older patients in order to maintain their autonomy, beneficence, and non-maleficence. The principal of justice was not specifically identified as a visible nursing action. However, all older patients received treatment, care, and reception in an equivalent manner.

Empirical and normative ethics: a synthesis relating to the care of older patients.

The aim of this study was to synthesize the concepts from empirical studies and analyze, compare and interrelate them with normative ethics. The International Council of Nurses (ICN) and the Health and Medical Service Act are normative ethics. Five concepts were used in the analysis; three from the grounded theory studies and two from the theoretical framework on normative ethics. A simultaneous concept analysis resulted in five outcomes: interconnectedness, interdependence, corroboratedness, completeness and good care are all related to the empirical perspective of the nurse's interaction with the older patient, and the normative perspective, i.e. that found in ICN code and SFS law. Empirical ethics and normative ethics are intertwined according to the findings of this study. Normative ethics influence the nurse's practical performance and could be supporting documents for nurses as professionals.

Ethical values in caring encounters on a geriatric ward from the next of kin's perspective: an interview study.

The aim of this study was to identify and describe the governing ethical values that next of kin experience in interaction with nurses who care for elderly patients at a geriatric clinic. Interviews with 14 next of kin were conducted and data were analysed by constant comparative analysis. Four categories were identified: receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category: 'Being amenable', a concept identified in the next of kin's description of the ethical values that they and the elderly patients perceive in the caring encounter. Being amenable means that the nurses are guided by ethical values; taking into account the elderly patient and the next of kin. Nurses' focusing on elderly patients' well-being as a final criterion affects the next of kin and their experience of this fundamental condition for high-quality care seems to be fulfilled.