The ethos brief index-validation of a brief questionnaire to evaluate wellness based on a holistic perspective in patients with restless legs syndrome.

PURPOSE: The aim of this study was to validate the Ethos Brief Index (EBI) in patients with Restless Legs Syndrome (RLS). METHODS: A cross-sectional design, including 788 subjects with RLS (65% women, 70.8 years, SD 11.3) from the Swedish RLS Association, was used. A postal survey was sent out to collect data regarding socio demographics, comorbidities, and RLS-related treatment data. Questionnaires included were EBI, the Restless Legs Syndrome-6 Scale (RLS-6), Restless Legs Syndrome-Quality of Life questionnaire (RLSQoL), the Insomnia Severity Index (ISI), and the Epworth Sleepiness Scale (ESS). The validity and reliability of the EBI were investigated using Rasch and confirmatory factor analysis (CFA) models. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age and gender groups, as well as insomnia, daytime sleepiness, RLS-related QoL and RLS severity were assessed. RESULTS: The results supported the unidimensionality of the EBI in the CFA (i.e., explaining 61.5% of the variance) and the Rasch model. The reliability of the EBI was confirmed using composite reliability and Cronbach's alpha. No DIF was identified for gender, age, insomnia, daytime sleepiness, RLS severity or RLS-related QoL. CONCLUSION: The EBI showed good validity and reliability and operated equivalently for male and female patients with RLS. Accordingly, healthcare professionals can use the EBI as a psychometrically sound tool to explore and identify patient-centered problems related to the whole life situation.

"It´s like walking in a bubble", nursing students´ perspectives on age suit simulation in a home environment - group interviews from reflection seminars.

BACKGROUND: Older persons with age-related and complex health problems will increasingly depend on care provision from nurses in their own homes. However, a barrier to quality care is ageism and nursing students´ disinterest in geriatrics. In addition, nurse education often falls short in preparing students for the complexity of geriatric care. Welfare technology (WT) is progressively implemented in home care to help older persons live at home despite their health problems. However, this process is intricate and requires acceptance and digital literacy among caregivers and older persons. Despite these challenges, nurse education can address and change negative attitudes through innovative teaching methods such as age suit simulation. Therefore, the study aims to describe nursing students´ experiences of age suit simulation in a home-like environment with WT and technical aids, and will reveal their perspective on ageing and providing care to older adults. METHODS: A qualitative explorative design using semi-structured group interviews (n=39) among nursing students. Data was analysed through reflexive thematic analysis. RESULTS: The analysis generated three main themes; "It's like walking in a bubble", "An eye opener" and "Concerns about ageing and the current structure of geriatric care". The main themes included eight subthemes. Adapting to the sensory and physical limitations of the age suit was an immersive experience and caused feelings of frustration, loneliness and disconnection. A prominent result was a raised awareness of cognitive loss, especially impaired vision, and students felt the simulations had made them aware of the everyday challenges older persons faced. Students highlighted the importance of patience and giving enough time in care situations by being present and having a critical perspective of WT. The students were mostly negative towards their own ageing and could better relate to older persons´ vulnerability. CONCLUSIONS: Age suit simulation was described as an embodied and eye-opening experience, raising nursing students´ awareness of older persons´ functional limitations and the consequences for dignity and independence. Coping with cognitive loss was especially difficult. Students were motivated to apply their new knowledge to clinical practice. Age suit simulation can complement geriatric education, preparing students for the complex care needs of older persons.

Validation of two brief instruments (the SURE and CollaboRATE) to measure shared decision-making in patients with restless legs syndrome.

Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision-making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk-benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross-sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS-related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome-6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care.

'I can see what's going on without being nosey ': What matters to people living with dementia about home as revealed through visual home tours.

OBJECTIVES: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. METHODS: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. RESULTS: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. DISCUSSION: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.

Taking time: The temporal politics of dementia, care and support in the neighbourhood.

Dementia is a global health challenge and currently the focus of a coordinated international response articulated through the notion of 'dementia-friendly communities and initiatives' (DFCIs). Yet, while increasing research attention has been paid to the social and spatial dimensions to life with dementia in a neighbourhood setting, the temporalities of dementia have been largely overlooked. This article sets out different aspects of the lived experience of time for people with dementia and unpaid carers, before exploring the temporal politics of formal dementia care and support. The authors show that time is a site for material struggle and a marker of unequal relations of power. People with dementia and unpaid carers are disempowered through access to formal care, and this is illustrated in their loss of (temporal) autonomy and limited options for changing the conditions of the care received. The authors advocate for a time-space configured understanding of the relationship with neighbourhood and foreground a tempo-material understanding of dementia. Set against the backdrop of austerity policy in the UK, the findings reveal that ongoing budgetary restrictions have diminished the capacity for social care to mediate in questions of social justice and inequality, at times even compounding inequity.

People diagnosed with dementia in Sweden: What type of home care services and housing are they granted? A cross-sectional study.

AIMS: This study aims to examine what types of home care services and housing are granted to people with a dementia diagnosis and how these types are associated with socio-demographic factors (sex, age, marital status, native or foreign born, and regional area). METHODS: A cross-sectional study of all people diagnosed with dementia in three Swedish counties was conducted from the medical records in 2012. Logistic regression analysis was carried out to investigate associations between home care services and housing and socio-demographic variables. RESULTS: In total, 17,405 people had a dementia diagnosis, and the majority were women, aged 80+ years, and unmarried. Some 72% were living in ordinary housing and 28% lived in special housing. Of those who lived in ordinary housing, 50% did not receive any home care service. Not receiving any type of home care services was less common for older people and was also associated with being married and living in rural municipalities. The most common home care services granted were home help and personal care. Special housing was more common for older people, unmarried persons, and those living in rural municipalities. CONCLUSIONS: Most people with a dementia diagnosis were living in ordinary housing, and, surprisingly, half of those did not receive any type of home care service. This knowledge is essential for making the living conditions and needs of people living with dementia more visible and to provide good home care services for people with dementia and their families.

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.

Quality of life among patients with restless legs syndrome: A systematic review and meta-analysis.

OBJECTIVE: The primary aim was to estimate the pooled mean score of quality of life (QoL) (total, mental and physical health components) among patients with Restless Legs Syndrome (RLS). Secondary aims were to assess: (I) QoL differences for RLS vs. control groups, (II) heterogeneity and possible sources; and (III) moderating variables. METHODS: Studies identified in PubMed, Scopus, Web of Science, and ProQuest between January 2000 and December 2022 were included. Methodological quality was assessed with Newcastle Ottawa Scale. The protocol was pre-registered (PROSPERO, CRD42023387318). RESULTS: Twenty-seven studies (20121 participants, 12 countries) were included. The corrected pooled estimated mean score of QoL was 47.92 (27 studies, CI 95 %: 43.11 to 52.72, range 0-100, i.e., low-high QoL) and was marginally affected by publication year (increased 0.89 by each year, p = 0.12). The corrected pooled estimated mean score of the mental health component was 47.32 (17 studies, 95 % CI: 43.12 to 51.51, range 0-100) and influenced by RLS instrument (decreased with recent versions, p = 0.05). The corrected pooled estimated mean score of the physical health component was 39.08 (17 studies, 95 % CI: 33.05 to 45.10, range 0-100), with no statistically significant moderator. The pooled estimated QoL scores were statistically significantly lower in RLS patients compared to control groups with standardized mean difference (SMD) of -0.78, -0.57 and -0.50 respectively for overall QoL (24 studies), physical and mental health components (14 studies). Total QoL SMD was affected by proportion of women. CONCLUSION: Low QoL was revealed among RLS patients, which was statistically significantly reduced compared to control groups.

Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students.

AIM: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention. DESIGN: A qualitative, descriptive design was adopted. METHODS: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study. RESULTS: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

Controlling the Uncontrollable: Patient Safety and Medication Management From the Perspective of Registered Nurses in Municipal Home Health Care.

Most adverse events in health care are related to medication management and they are almost always preventable. Increased knowledge of patient safety related to medication management in home health care is an urgent issue to provide safe care for all patients regardless of where the health care takes place. This study explored patient safety within medication management in municipal home health care. Vignettes were used as stimulus during qualitative interviews with registered nurses. Three main themes with related subthemes were identified as challenges to patient safety within medication management in home health care: (1) challenges to information transfer, (2) challenges related to delegation, and (3) challenges of advanced medical treatments in the home. The issue of transfer of information permeated our findings. Coordinating medications, delegating tasks, along with more advanced care require clear communication between care providers to be compatible with patient safety within medication management in home health care.

Getting lost with dementia: Encounters with the time-space of not knowing.

In this paper we explore the experience and implications of getting lost with dementia. While getting lost has become culturally emblematic of dementia, speaking as it does to a widespread fear of losing our place in the world, it is marked by an overall absence of critical attention. We argue that this critical hesitancy is part of a broader unease with 'dementing' that reveals a paradox in dementia scholarship as growing emphasis on strengths-based and capacity-oriented approaches to the condition shift attention away from episodes of disorientation, forgetting and unknowing that commonly arise after onset. We therefore explore getting lost with dementia, not only as a route to better understanding what happens during such events and the meaning it holds but also to consider the implications for a broader politics of the social inclusion of people living with dementia. Reporting findings from a five-year international study of the neighbourhood experiences of people with dementia, we suggest that through such experiences as getting lost, people with dementia have a unique and distinctive contribution to make to the ever-evolving character of public space and civic culture. In particular, we argue that getting lost and the subsequent recovery or reconstitution that ensues can help inform efforts to reimagine public space. This includes looking beyond risk reduction in responses to dementia and public and outdoor settings to consider how freedom of movement for people with dementia might be enhanced rather than curtailed. Our learning points to the value of making the process of dementing more visible and central to the politics and practices of social inclusion.

Health promotion initiative: A dementia-friendly local community in Sweden.

Dementia is a great public health concern worldwide. Despite this, little is known from a health-promoting perspective about dementia in general as a public health issue, in dialog with people living with dementia, applicable at individual, group, and societal levels with regard to policies and practice. This study therefore aims to explore the experiences related to living with dementia in the local community by advancing a health-promoting perspective. Semi-structured individual and group interviews were conducted with participants (n = 22) with lived, professional, and personal experiences of dementia living in a medium-sized municipality in Sweden. Transcripts were analyzed by thematic analysis. Four themes emerged: health promotion through knowledge and public awareness, health promotion through opportunities to be active, health promotion through meaningful meeting places, and health promotion through improvements in the welfare system. We found that more knowledge and public awareness about dementia are needed to advance a health-promoting perspective and increase the prominence of dementia as a public health issue. Further research and policy need to focus more on how professionals in dementia care practice could be involved in promoting health and well-being for people with dementia.

'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish field site of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.