Holistic health care: Patients\u27 experiences of health care provided by an Advanced Practice Nurse

Introduction: Advanced Practice Nurse (APN) is a fairly new role in the Swedish health care system. Aim: To describe patients\u27 experiences of health care provided by an APN in primary health care. Methods: An inductive, descriptive qualitative approach with qualitative open‐ended interviews was chosen to obtain descriptions from 10 participants regarding their experiences of health care provided by an APN. The data were collected during the spring 2012, and a qualitative approach was used for analyze. Results: The APNs had knowledge and skills to provide safe and secure individual and holistic health care with high quality, and a respectful and flexible approach. The APNs conveyed trust and safety and provided health care that satisfied the patients\u27 needs of accessibility and appropriateness in level of care. Conclusion: The APNs way of providing health care and promoting health seems beneficial in many ways for the patients. The individual and holistic approach that characterizes the health care provided by the APNs is a key aspect in the prevailing change of health care practice. The transfer of care and the increasing number of older adults, often with a variety of complex health problems, call for development of the new role in this context

An intervention with dance and yoga for girls with functional abdominal pain disorders (Just in TIME): Protocol for a randomized controlled trial

©Anna Philipson, Stefan Särnblad, Lars Ekstav, Mats Eriksson, Ulrika L Fagerberg, Margareta Möller, Evalotte Mörelius, Anna Duberg. Background: Functional abdominal pain disorders (FAPDs) affect many children worldwide, predominantly girls, and cause considerable long-term negative consequences for individuals and society. Evidence-based and cost-effective treatments are therefore strongly needed. Physical activity has shown promising effects in the practical management of FAPDs. Dance and yoga are both popular activities that have been shown to provide significant psychological and pain-related benefits with minimal risk. The activities complement each other, in that dance involves dynamic, rhythmic physical activity, while yoga enhances relaxation and focus. Objective: This study aims to evaluate the effects of a dance and yoga intervention among girls aged 9 to 13 years with FAPDs. Methods: The study is a prospective randomized controlled trial among girls aged 9 to 13 years with functional abdominal pain, irritable bowel syndrome, or both. The target sample size was 150 girls randomized into 2 arms: an intervention arm that receives dance and yoga sessions twice weekly for 8 months and a control arm that receives standard care. Outcomes will be measured at baseline and after 4, 8, 12, and 24 months, and long-term follow-up will be conducted 5 years from baseline. Questionnaires, interviews, and biomarker measures, such as cortisol in saliva and fecal microbiota, will be used. The primary outcome is the proportion of girls in each group with reduced pain, as measured by the faces pain scale-revised in a pain diary, immediately after the intervention. Secondary outcomes are gastrointestinal symptoms, general health, mental health, stress, and physical activity. The study also includes qualitative evaluations and health economic analyses. This study was approved by the Regional Ethical Review Board in Uppsala (No. 2016/082 1-2). Results: Data collection began in October 2016. The intervention has been performed in 3 periods from 2016 through 2019. The final 5-year follow-up is anticipated to be completed by fall 2023. Conclusions: Cost-effective and easily accessible interventions are warranted to reduce the negative consequences arising from FAPDs in young girls. Physical activity is an effective strategy, but intervention studies are needed to better understand what types of activities facilitate regular participation in this target group. The Just in TIME (Try, Identify, Move, and Enjoy) study will provide insights regarding the effectiveness of dance and yoga and is anticipated to contribute to the challenging work of reducing the burden of FAPDs for young girls

The ICF core sets for hearing loss project : international expert survey on functioning and disability of adults with hearing loss using the international classification of functioning, disability, and health (ICF)

OBJECTIVE : To identify relevant aspects of functioning, disability, and contextual factors for adults with hearing loss (HL) from hearing health professional perspective summarized using the ICF classification as reference tool. DESIGN : Internet-based cross-sectional survey using open-ended questions. Responses were analysed using a simplified content analysis approach to link concept to ICF categories according to linking rules. STUDY SAMPLE : Hearing health professionals (experts) recruited through e-mail distribution lists of professional organizations and personal networks of ICF core set for hearing loss steering committee members. Stratified sampling according to profession and world region enhanced the international and professional representation. RESULTS : Sixty-three experts constituted the stratified sample used in the analysis. A total of 1726 meaningful concepts were identified in this study, resulting in 209 distinctive ICF categories, with 106 mentioned by 5% or more of respondents. Most categories in the activities & participation component related to communication, while the most frequent environmental factors related to the physical environment such as hearing aids or noise. Mental functions, such as confidence or emotional functions were also frequently highlighted. CONCLUSIONS : More than half (53.3%) of the entire ICF classification categories were included in the expert survey results. This emphasizes the importance of a multidimensional tool, such as the ICF, for assessing persons with hearing loss.Oticon Foundation and Hörselforskningsfonden (Swedish hearing research foundation)http://informahealthcare.com/loi/ijahb201

Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study

Background Huntington's disease is caused by a CAG repeat expansion in the huntingtin gene, HTT. Age at onset has been used as a quantitative phenotype in genetic analysis looking for Huntington's disease modifiers, but is hard to define and not always available. Therefore, we aimed to generate a novel measure of disease progression and to identify genetic markers associated with this progression measure. Methods We generated a progression score on the basis of principal component analysis of prospectively acquired longitudinal changes in motor, cognitive, and imaging measures in the 218 indivduals in the TRACK-HD cohort of Huntington's disease gene mutation carriers (data collected 2008–11). We generated a parallel progression score using data from 1773 previously genotyped participants from the European Huntington's Disease Network REGISTRY study of Huntington's disease mutation carriers (data collected 2003–13). We did a genome-wide association analyses in terms of progression for 216 TRACK-HD participants and 1773 REGISTRY participants, then a meta-analysis of these results was undertaken. Findings Longitudinal motor, cognitive, and imaging scores were correlated with each other in TRACK-HD participants, justifying use of a single, cross-domain measure of disease progression in both studies. The TRACK-HD and REGISTRY progression measures were correlated with each other (r=0·674), and with age at onset (TRACK-HD, r=0·315; REGISTRY, r=0·234). The meta-analysis of progression in TRACK-HD and REGISTRY gave a genome-wide significant signal (p=1·12 × 10−10) on chromosome 5 spanning three genes: MSH3, DHFR, and MTRNR2L2. The genes in this locus were associated with progression in TRACK-HD (MSH3 p=2·94 × 10−8 DHFR p=8·37 × 10−7 MTRNR2L2 p=2·15 × 10−9) and to a lesser extent in REGISTRY (MSH3 p=9·36 × 10−4 DHFR p=8·45 × 10−4 MTRNR2L2 p=1·20 × 10−3). The lead single nucleotide polymorphism (SNP) in TRACK-HD (rs557874766) was genome-wide significant in the meta-analysis (p=1·58 × 10−8), and encodes an aminoacid change (Pro67Ala) in MSH3. In TRACK-HD, each copy of the minor allele at this SNP was associated with a 0·4 units per year (95% CI 0·16–0·66) reduction in the rate of change of the Unified Huntington's Disease Rating Scale (UHDRS) Total Motor Score, and a reduction of 0·12 units per year (95% CI 0·06–0·18) in the rate of change of UHDRS Total Functional Capacity score. These associations remained significant after adjusting for age of onset. Interpretation The multidomain progression measure in TRACK-HD was associated with a functional variant that was genome-wide significant in our meta-analysis. The association in only 216 participants implies that the progression measure is a sensitive reflection of disease burden, that the effect size at this locus is large, or both. Knockout of Msh3 reduces somatic expansion in Huntington's disease mouse models, suggesting this mechanism as an area for future therapeutic investigation

Hidden Treasure or Sinking Ship? Diagnosing the Study of Political Leadership

The study of leadership leads a rather languishing life in the discipline of political science. In this article, we explore the literature on political leadership in order to 1) identify the obstacles that have prevented this literature from a more extensive dialogue with related fields in political science, and 2) explore whether this literature contains hidden treasures that could contribute to leadership-analyses in the discipline. We suggest that the tendency to characterize the study of leadership primarily as an art (rather than a science) might have prevented conversations with other sub-fields; however, we argue that the literature contains useful theoretical insights for the analysis of both broader societal transformations and specific political outcomes

Navigating Towards Effective Fishery Management? Exploring the Dynamics of Compliance

This paper deals with compliance in the European and Swedish fisheries management regimes. It takes on a theoretical exploration of the dynamics of institutional compliance, and extracts six hypotheses based on theoretical approaches focusing on the links between compliance and individual level trust, compliance and instituional trust, and compliance and norms. More specifically, the hypotheses suggest (1) that fishermen experiencing that governmental authorities perceive them as cheaters will be more prone to accept rule violations that others; (2) that the inclination of individual fishermen to accept regulations depend on their perceptions of the behaviour of other fishermen; (3) that fishermen feeling that they and their Swedish fellows are put under stricter regulations and supervision than fishermen in other countries are more tolerant against violations; (4) that those experiencing that fishermen’s knowledge is valued among other parties are more positive to the prevailing regulations than others; (5) that fishermen with experiences from stakeholder participation in the fisheries regime are more negative to rule violations; and (6) that there is a moral distinction implying that rule-violations are accepted as long as they are considered as an expression of need rather than greed. The empirical test of these hypotheses are beyond the scope of this paper. Having presented the six hypotheses, a descriptive section on European and Swedish fishery closes the paper

Navigating Towards Effective Fishery Management: Exploring the Impact of Imbalanced Burdens on Regime Legitimacy

Despite two decades of the Common Fishery Policy (CFP), the fishery politics of the European Union (EU) is considered a failure when it comes to securing fish-stocks. This paper explores reasons to this state of affairs by analysing the views and opinions among those subjected to regulations, namely professional fishermen (in Sweden). Since the capacity of any natural management regime to protect the resources depends on appropriators’ compliance, the prospects of sustainable natural management depends on improved understanding of when and why appropriators consent, and ultimately comply, with a regulative policy. So, when do fishermen comply with a fishery management regime? Instrumental views give a straightforward explanation; when the risk of being caught is considered high (and the potential economic profit of rule-breaking is low). More normative views point at various “qualities of government” such as procedural fairness, distributive justice, trust and legitimacy, but is much less specified in terms of actual explanations to appropriators’ actions. This paper adds a piece to the compliance puzzle by, relying on the model presented by Levi(1997), exploring the importance of 1) imbalanced burdens and 2) trust in authorities. Results confirm the importance of trust in authorities but contradict the idea that experiences of imbalance in burdens have a negative effect on legitimacy. Strikingly enough, fishermen who believe that other governments take greater concern in their fishing-fleets than the Swedish government, value the principles of Swedish fishery politics more

Falls and dizziness in frail older people. Predictors, experiences and the effects of a case management intervention

Doktoravhandling. Hovedhensikten var å undersøke risikofaktorer for fall og svimmelhet, samt å belyse hvordan eldre mennesker med langvarig svimmelhet føler at hverdagen påvirkes. Et annet formål var å evaluere effekten av en intervensjon rettet mot fall og fallskader hos skrøpelige eldre bosatt i tradisjonelle hjem.Falling in old age may have a large impact on daily life. Falls can lead to injuries, reduced mobility and reduced quality of life. The risk of falls increases with age and frailty level. Dizziness is a strong risk factor for falls, and preventing falls and dizziness in older people is essential. The overall aim of this thesis was to investigate risk factors for falls or dizziness and to explore older people’s experiences of living with chronic dizziness. Furthermore, the aim was to evaluate the effects of a home-based case management intervention on falls in frail older people. The thesis comprised three studies. Study I was a longitudinal cohort study, the Swedish National Study on Aging and Care (SNAC), with 1,402 participants in 10 age cohorts from 60 to 96 years. The study started in 2001 and follow-up was done after 3 and 6 years. The sample was divided into subjects aged 60-78 years and 80-96 years and the prevalence and predictors of falls or dizziness were investigated (Paper I). Study II was a qualitative study exploring the experiences of living with chronic dizziness in old age and included 13 people (7 women and 6 men, aged 73 to 87 years). Interviews were conducted and were analysed by content analysis (Paper II). Study III was a randomized controlled trial (RCT) including 153 participants randomly assigned to a case management intervention (n=80) or a control group (n=73). The study included people aged 65+ years who lived in their ordinary homes with functional dependency and repeated health care contacts. The intervention included home visits by a nurse and a physiotherapist at least once a month during 12 months. Data from this study were used in two papers. Paper III investigated predictive validity for falls and optimal cut-off scores for the Downton Fall Risk Index (DFRI), Timed Up and Go (TUG) and the Romberg Test (RT). Paper IV investigated the effects of the case management intervention on falls, injurious falls and falls resulting in medical care. The results in Paper I show almost doubled prevalences in the older age cohort. In the younger age cohort 16% reported falls and 18% reported dizziness. In the older age cohort 32% reported falls and 31% reported dizziness. The strongest predictors differed between the age cohorts. The strongest predictors for falls were use of neuroleptics and personal activities of daily living (PADL) in the younger age cohort, and history of falling and instrumental activities of daily living (IADL) in the older age cohort. The strongest predictors for dizziness were history of dizziness and feeling nervous (younger age cohort) and history of dizziness and history of falling (older age cohort). In Paper II the experiences of the interviewees were interpreted as fighting for control in an unpredictable life. This included fumbling for a cure and improvements, struggling to maintain an ordinary life and a restricted everyday life with constant threats. Health care had not been able to meet the needs of older people with chronic dizziness. The results in Paper III show that no test had high predictive validity for falls. DFRI (cut-off ? 3 points) and TUG (cut-off ?12 seconds) showed about 80% sensitivity and 30% specificity. RT show low sensitivity and is not recommended to be used in frail older people at home. The home-based case management intervention in Paper IV did not show any effect on falls, injurious falls and falls resulting in medical care. Falls and dizziness are common, serious health complaints in frail older people and deserve attention. The complex interaction between falls, dizziness and related factors suggests that fall prevention interventions should be individualized. Older people with chronic dizziness have, in spite of frequent health care contacts, needs that are unmet. Besides identifying and treating the underlying cause of dizziness, managing older people with dizziness may also focus on appropriate coping strategies in daily life and should not end until the individual has regained control of their daily life. DFRI and TUG were not able to correctly identify people with and without a high fall risk. They may be used as screening tools, but a comprehensive assessment of a person’s risk factors for falls is needed before a fall prevention intervention is introduced. Preventing falls in frail older people is challenging. The home-based case management intervention did not show any effect on falls, injurious falls and falls resulting in medical care, and further research is needed on how to prevent falls in frail older people living at home

Jag är aktiv, jag sitter inte här och virkar och sånt : Äldre personers upplevelser av sjukgymnastisk verksamhet i kommunal vård och omsorg för äldre

Syftet med studien var att utifrån ett vårdtagarperspektiv nå ökad kunskap om och förståelse för hur äldre personer uppfattar och upplever sjukgymnastik inom kommunal verksamhet. Studien baseras på åtta intervjuer med äldre vårdtagare mellan 67 och 89 år, fyra män och fyra kvinnor, med olika grader av erfarenhet av sjukgymnastisk behandling utförd på olika enheter i kommunal verksamhet. Under analysen framkom tre kategorier; •Den äldre som individ - förutsättningar och förväntningar •Yttre påverkande faktorer – rehaborganisation, miljö och bemötande •Sjukgymnastinsatsernas innehåll och karaktär Resultatet visar att de intervjuade med en övergående funktionsnedsättning, t.ex. efter höft-fraktur, som fått sjukgymnastik under en kort, intensiv behandlingsperiod på en rehabenhet eller i ett hemrehabteam, väsentligen var nöjda med den behandling de fått. Däremot beskri-ver de intervjuade med en kronisk funktionsnedsättning, t.ex. efter stroke, ett missnöje över den sjukgymnastiska behandling de fått. Dessa vårdtagare har fått sjukgymnastik i hemsjuk-vården eller på särskilda boende och de uttrycker ett missnöje framförallt över att tillgången är begränsad men även gällande kvalitén. Sjukgymnastik är ett viktigt inslag i många äldres liv, både i direkt anslutning till sjukdom eller skada men även för de med störst funktionsnedsättning. De ser sjukgymnastik som ett sätt att förbättra och/eller behålla sin fysiska funktionsförmåga i ett led att behålla sin själv-ständighet, integritet och livsstil. Alla informanter uttrycker en vilja och drivkraft till att vara självständiga, en önskan om att klara sig själv i så stor utsträckning som möjligt