Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Language and Identity at School and at Home : Language Shift among Mennonites in Paraguay

This essay has investigated the question of an ongoing language shift from Plattdeutsch and German to Spanish among the Mennonites in Paraguay and the role of the school in this process. The aims of the study were to compare the use of languages among the Mennonites in Asuncion and in the Menno colony and to identify the importance that parents give to the languages and to compare this with a school leader perspective. The aim was also to identify factors that influence the language shift and identify the influence that the shift excerpts on Mennonite values and identity. The results are based on my own observations, interviews with Mennonite women and interviews with key informants who have insight into the school policy issues. The outcome may be used as a basis for educational and language planning. There is a need to consciously sit down and re-define the Mennonite identity and to make the community and the school aware of their responsibility in language maintenance.

A new Home, far from Home : The assimilation process of women involved in intercultural marriages based on Internet meeting

The internet has revolutionized the way we socialize, and as a consequence the way to love. The new communication technologies have facilitated intercultural relationships. Nowadays family relations are one of the major factors in immigration to European countries. Family relations means persons who arrive as family dependents and in accordance with laws regulating family reunification. This thesis aims to apply the classical assimilation theory stated by Milton Gordon (1964), which formulates a series of assimilation stages through which an individual must pass in order to be completely assimilated. In accordance with this theory, marriage is the final phase for a newcomer to fully incorporate into the host society. Thus, based on this presumption and other contemporary theories, the present study has analysed how women who get involved in intercultural marriages based on internet meeting experience these assimilation stages and evaluated the resources used by respondents to incorporate themselves into Swedish society.The main goal of the study was to determine if jumping to the last stage of assimilation does assure the incorporation in the social or/and labour spheres and the findings demonstrate that even though husbands are a valuable resource for assimilation, several cultural issues in Swedish society make it difficult to assure success for the newcomers.On the other hand, Sweden is a country with a strong national sentiment and the assimilation of immigrants still is an important issue to deal with. The Swedish Integration Board has disappeared and major projects for integration have been left in the hands of the municipalities or the Migration Board, institutions that still do not know how to deal with this dilemma.

Anhörigas upplevelser i samband med vård av en äldre person i hemmet : En litteraturöversikt

SAMMANFATTNINGSyftet: Syftet med denna systematiska litteraturstudie var att studera hur anhöriga till äldre personer upplevde sin situation i i samband med att de vårdade sina äldre hemma, hur de hanterade sin situation, samt vilka strategier de använde sig av för att hantera sin roll som anhörigvårdare. Metod: Databaserna Cinahl och Medline användes i sökningarna efter relevanta artiklar. Sökord som användes var relative and older people and home care, home health care and family caregiver elderly people, family caregivers and care givers of aging people, elderly people and family care givers of aging people, family care givers of older people, family caregivers and frail elderly, family caregiver and older people and home care, home care older people and family caregivers older people, family caregivers older people. Efter genomläsning bedömdes 16 artiklar vara användbara i resultatet. Dessa kom från vetenskapliga tidskrifter och artiklarna innehöll både kvalitativa studier som kvantitativa studier. Resultat: De flesta anhörigvårdare var kvinnor, de kunde uppleva en högre belastning än män. De anhöriga påverkades både mentalt, fysiskt och emotionellt. De kände sig bundna men kunde även känna ett välbefinnande i vården av den äldre personen. Anhöriga upplevde sin roll som anhörigvårdare till äldre personer i hemmen som att de var delaktiga i omsorgen genom praktiskt som känslomässigt stöd. Deras situation hade även inverkan på deras upplevelse av stress och hur de hanterade situationen. En del äldre anhörigvårdare var själva äldre och i behov av hjälp. Konsekvenserna av deras reaktioner/upplevelser beskrevs som både subjektiv och objektiv belastning. Samt att de även var mindre benägna att söka stöd i form av avlastning för sina äldre personer. Slutsats: Rollen som anhörigvårdare till äldre personer som vårdas i hemmen innebar förändringar i anhörigas livssituation, de fick ta ett stort ansvar för den äldre personen. De upplevde stora påfrestningar både känslomässigt som praktiskt, många kände sig ensamma utan stöd, andra hade olika sätt att hantera sin situation. Äldre anhörigvårdare var mer utsatta för belastning av olika skäl när de vårdade äldre personer i hemmet, dels var de själva äldre samt att de själva kunde vara i behov av hjälp för sina hälsoproblem. Kvinnorna var den grupp anhörigvårdare som upplevde störst belastning i vården av äldre personer i hemmet. När det gällde att söka hjälp och stöd såg det olika ut bland anhörigvårdarna, trots att kvinnorna upplevde störst belastning var de minst benägna att söka hjälp.

Kvinnors upplevelse av planerad hemförlossning i Skandinavien : Women´s experience of planned home birth in the Scandinavian countries

Background: In Sweden and Norway planned home birth is not included in the health care system. In Denmark women with expected low risk birth have the right to choose home birth. Registrations of home births in the Nordic countries are not completed and women’s experiences of planned home birth in Scandinavian context are not earlier described.Objective: The aim of this study was to describe women’s experiences of planned home birth in the Scandinavian countries.Design: Inductive content analysis. Fifty-three Scandinavian women who have experienced planned home birth have replied an open question in a questionnaire. Findings: In the analysis five categories and twelve subcategories emerged. The categories were, to feel secure, experiences of support, being in control, harmony and insecurity. The women felt secure and calm in their own homes. They felt being in control, secure, support and trust in the midwife, relatives and the own body. What worried the women most in presence of the delivery was that the midwife should not be present. Keywords: Home birth, experiences, women.

We did it together : Fathers´ experiences of planned home birth in the Nordic countries

Sammanfattning: Bakgrund: för många pappor kan det vara en av livets största och bästa stund att närvara vid när deras barn föds. Det finns studier som beskriver pappors upplevelse av sjukhusförlossning, däremot finns det få studier som beskriver pappors upplevelse av planerad hemförlossning. Syftet med den här studien är att beskriva pappans upplevelser och erfarenheter av planerad hemförlossning. Metod: i denna studie medverkar 105 pappor från de nordiska länderna som har deltagit i planerad hemförlossning mellan 2009-2011. Materialet från en öppen enkätfråga analyserades med hjälp av deduktiv ansats. Den öppna frågan löd ”beskriv gärna förlossningen med egna ord”. Resultat: papporna upplevde den planerade hemförlossningen som lugn och säker, mycket tack vare den professionella barnmorskan och den välbekanta miljön. Att få vara hemma med sin partner och om så önskades, sin familj var högt skattat. Födelseprocessen hemma beskrevs av papporna som att ”vi gjorde det tillsammans” och ”det var vår egen förlossning”. Papporna uttryckte delaktighet i förlossningsflödet. De kände också att de fick ett barn och var en del av en vacker förlossning full av kärlek. Konklusion: att välkomna ett barn hemma i en lugn miljö där paret känner sig trygga och ostörda, kan underlätta en positiv och meningsfull förlossningsupplevelse.

Palliativ vård i hemmet - Anhörigas upplevelser av att vårda en närstående med cancer : En Litteraturöversikt

Syfte: Syftet med litteraturöversikten var att beskriva anhörigas upplevelser av att vårda sin närstående i den palliativa vården i hemmet. Metod: Studien genomfördes som en litteraturöversikt. Insamlingen av vetenskapliga artiklar utfördes på databaserna CINAHL, PubMed, Vård I Norden och manuella sökningar utfördes i elektroniska tidskrifter. I resultatet användes sammanlagt 15 kvalitativa artiklar som svarade mot litteraturöversiktens syfte och frågeställning. Bedömningsmall med kvalitativ inriktning användes för att granska artiklarnas kvalité. Artiklar med medel till hög kvalité inkluderades i studiens resultat. Resultat: Resultatet byggde på fem huvudteman utifrån anhörigas upplevelser av palliativ vård, (1) anhörigas beslut att vårda en närstående i hemmet, beskriver anhörigas negativa syn på sjukhusmiljön och närståendes önskan om att avsluta sitt liv i hemmet. (2) positiva och negativa faktorer med vård i hemmet, beskriver trygghet i palliativa teamets tillgänglighet, negativ faktor var bland annat trötthet, isolering och brist på stöd. (3) ansvar för vården, att vara oförberedd på rollen som anhörigvårdare och 24 timmars ansvar för sin närstående. (4) relationen mellan anhörig och närstående, stöd i att kommunicera med sin närstående i existentiella frågor. (5) stöd från kvalificerad vårdpersonal, beskriver bristande information från kvalificerad vårdpersonal om sjukdomsförlopp och vårdarrollen. Psykiskt- socialt- och existentiellt stöd var bristfälligt och som anhöriga uttryckte behov av. Konklusion: De främsta faktorerna till valet att bli anhörigvårdare grundade sig i viljan att uppfylla närståendes önskan att få spendera sista tiden i hemmet och att sjukhusmiljön sågs som kall och opersonlig. Anhöriga önskade socialt- psykiskt- och existentiellt stöd.

Anhörigas upplevelser när en familjemedlem som drabbats av demens flyttar in på ett särskilt boende

Bakgrund: När beslutet att flytta in på ett särskilt boende fattats förändras livssituationen för både den som drabbats av demens som för de anhöriga. Syftet: Syftet med denna litteraturöversikt var att studera och beskriva anhörigas upplevelser i samband med att en person som drabbats av demens flyttar in på ett särskilt boende. Metod: Studien genomfördes som en litteraturöversikt. Litteratur­sökningarna gjordes i databaserna Medline och Cinahl efter relevanta artiklar. Sökord som användes var relatives, experience, caregivers burden, coping, dementia, nursing home, placement, decision, Sweden, family caregivers. Sexton vetenskapliga artiklar analyserades med en kvalitativ innehållsanalys. Analysen resulterade i fem olika kategorier: att skapa en relation att känna sig delaktig, att känna skuld, att känna osäkerhet samt att fatta rätt beslut. Resultat: Att ta beslutet att flytta en person som drabbats av demens var svårt, eftersom det ofta är förknippat med skuldkänslor, att inte känna sig delaktig, samt en känsla av osäkerhet, och en oro om att inte ha tagit rätt beslut. Slutsats: Rollen som anhörig till en person som drabbats av demens är svår och det innebär en hög belastning samt en hög nivå av stress. Det är viktigt att den anhörige får stöd och uppmuntran och där har vårdpersonalen en viktig roll.

Health and quality of care from older peoples' and formal caregivers' perspective

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.

A home environment test battery for status assessment in patients with motor fluctuations

Background and aims Evaluating status in patients with motor fluctuations is complex and occasional observations/measurements do not give an adequate picture as to the time spent in different states. We developed a test battery to assess advanced Parkinson patients' status consisting of diary assessments and motor tests. This battery was constructed and implemented on a handheld computer with built-in mobile communication. In fluctuating patients, it should typically be used several times daily in the home environment, over periods of about one week. The aim of this battery is to provide status information in order to evaluate treatment effects in clinical practice and research, follow up treatments and disease progression and predict outcome to optimize treatment strategy. Methods Selection of diary questions was based on a previous study with Duodopa® (DIREQT). Tapping tests (with and without visual cueing) and a spiral drawing test were added. Rapid prototyping was used in development of the user interface. An evaluation with two pilot patients was performed before and after receiving new treatments for advanced disease (one received Duodopa® and one received DBS). Speed and proportion missed taps were calculated for the tapping tests and entropy of the radial drawing velocity was calculated for the spiral tests. Test variables were evaluated using non-parametric statistics. Results Post-treatment improvement was detected in both patients in many of the test variables. Conclusions Although validation work remains, preliminary results are promising and the test battery is currently being evaluated in a long-term health economics study with Duodopa® (DAPHNE).

Visualization of spirography-based objective measures in Parkinson's disease

Objective: To investigate whether advanced visualizations of spirography-based objective measures are useful in differentiating drug-related motor dysfunctions between Off and dyskinesia in Parkinson’s disease (PD). Background: During the course of a 3 year longitudinal clinical study, in total 65 patients (43 males and 22 females with mean age of 65) with advanced PD and 10 healthy elderly (HE) subjects (5 males and 5 females with mean age of 61) were assessed. Both patients and HE subjects performed repeated and time-stamped assessments of their objective health indicators using a test battery implemented on a telemetry touch screen handheld computer, in their home environment settings. Among other tasks, the subjects were asked to trace a pre-drawn Archimedes spiral using the dominant hand and repeat the test three times per test occasion. Methods: A web-based framework was developed to enable a visual exploration of relevant spirography-based kinematic features by clinicians so they can in turn evaluate the motor states of the patients i.e. Off and dyskinesia. The system uses different visualization techniques such as time series plots, animation, and interaction and organizes them into different views to aid clinicians in measuring spatial and time-dependent irregularities that could be associated with the motor states. Along with the animation view, the system displays two time series plots for representing drawing speed (blue line) and displacement from ideal trajectory (orange line). The views are coordinated and linked i.e. user interactions in one of the views will be reflected in other views. For instance, when the user points in one of the pixels in the spiral view, the circle size of the underlying pixel increases and a vertical line appears in the time series views to depict the corresponding position. In addition, in order to enable clinicians to observe erratic movements more clearly and thus improve the detection of irregularities, the system displays a color-map which gives an idea of the longevity of the spirography task. Figure 2 shows single randomly selected spirals drawn by a: A) patient who experienced dyskinesias, B) HE subject, and C) patient in Off state. Results: According to a domain expert (DN), the spirals drawn in the Off and dyskinesia motor states are characterized by different spatial and time features. For instance, the spiral shown in Fig. 2A was drawn by a patient who showed symptoms of dyskinesia; the drawing speed was relatively high (cf. blue-colored time series plot and the short timestamp scale in the x axis) and the spatial displacement was high (cf. orange-colored time series plot) associated with smooth deviations as a result of uncontrollable movements. The patient also exhibited low amount of hesitation which could be reflected both in the animation of the spiral as well as time series plots. In contrast, the patient who was in the Off state exhibited different kinematic features, as shown in Fig. 2C. In the case of spirals drawn by a HE subject, there was a great precision during the drawing process as well as unchanging levels of time-dependent features over the test trial, as seen in Fig. 2B. Conclusions: Visualizing spirography-based objective measures enables identification of trends and patterns of drug-related motor dysfunctions at the patient’s individual level. Dynamic access of visualized motor tests may be useful during the evaluation of drug-related complications such as under- and over-medications, providing decision support to clinicians during evaluation of treatment effects as well as improve the quality of life of patients and their caregivers. In future, we plan to evaluate the proposed approach by assessing within- and between-clinician variability in ratings in order to determine its actual usefulness and then use these ratings as target outcomes in supervised machine learning, similarly as it was previously done in the study performed by Memedi et al. (2013).

Fear causes tears – perineal injuries in home birth settings : a Swedish interview study

Background: Perineal injury is a serious complication of vaginal delivery that has a severe impact on the quality of life of healthy women. The prevalence of perineal injuries among women who give birth in hospital has increased over the last decade, while it is lower among women who give birth at home. The aim of this study was to describe the practice of midwives in home birth settings with the focus on the occurrence of perineal injuries. Methods: Twenty midwives who had assisted home births for between one and 29 years were interviewed using an interview guide. The midwives also had experience of working in a hospital delivery ward. All the interviews were tape-recorded and transcribed. Content analysis was used. Results: The overall theme was "No rushing and tearing about", describing the midwives' focus on the natural process taking its time. The subcategories 1) preparing for the birth; 2) going along with the physiological process; 3) creating a sense of security; 4) the critical moment and 5) midwifery skills illuminate the management of labor as experienced by the midwives when assisting births at home. Conclusions: Midwives who assist women who give birth at home take many things into account in order to minimize the risk of complications during birth. Protection of the woman's perineum is an act of awareness that is not limited to the actual moment of the pushing phase but starts earlier, along with the communication between the midwife and the woman.

Tha contribution of home-based technology to older people's quality of life in extra care housing

Background: British government policy for older people focuses on a vision of active ageing and independent living. In the face of diminishing personal capacities, the use of appropriate home-based technology (HBT) devices could potentially meet a wide range of needs and consequently improve many aspects of older people's quality of life such as physical health, psychosocial well-being, social relationships, and their physical or living environment. This study aimed to examine the use of HBT devices and the correlation between use of such devices and quality of life among older people living in extra-care housing (ECH).  Methods: A structured questionnaire was administered for this study. Using purposive sampling 160 older people living in extra-care housing schemes were selected from 23 schemes in England. A face-to-face interview was conducted in each participant's living unit. In order to measure quality of life, the SEIQoL-Adapted and CASP-19 were used.  Results: Although most basic appliances and emergency call systems were used in the living units, communally provided facilities such as personal computers, washing machines, and assisted bathing equipment in the schemes were not well utilised. Multiple regression analysis adjusted for confounders including age, sex, marital status, living arrangement and mobility use indicated a coefficient of 1.17 with 95% CI (0.05, 2.29) and p = 0.04 [SEIQoL-Adapted] and 2.83 with 95% CI (1.17, 4.50) and p = 0.001 [CASP-19].  Conclusions: The findings of the present study will be value to those who are developing new form of specialised housing for older people with functional limitations and, in particular, guiding investments in technological aids. The results of the present study also indicate that the home is an essential site for developing residential technologies.

Assessment of PD Speech Anomalies @ Home

Background: Voice processing in real-time is challenging. A drawback of previous work for Hypokinetic Dysarthria (HKD) recognition is the requirement of controlled settings in a laboratory environment. A personal digital assistant (PDA) has been developed for home assessment of PD patients. The PDA offers sound processing capabilities, which allow for developing a module for recognition and quantification HKD. Objective: To compose an algorithm for assessment of PD speech severity in the home environment based on a review synthesis. Methods: A two-tier review methodology is utilized. The first tier focuses on real-time problems in speech detection. In the second tier, acoustics features that are robust to medication changes in Levodopa-responsive patients are investigated for HKD recognition. Keywords such as Hypokinetic Dysarthria , and Speech recognition in real time were used in the search engines. IEEE explorer produced the most useful search hits as compared to Google Scholar, ELIN, EBRARY, PubMed and LIBRIS. Results: Vowel and consonant formants are the most relevant acoustic parameters to reflect PD medication changes. Since relevant speech segments (consonants and vowels) contains minority of speech energy, intelligibility can be improved by amplifying the voice signal using amplitude compression. Pause detection and peak to average power rate calculations for voice segmentation produce rich voice features in real time. Enhancements in voice segmentation can be done by inducing Zero-Crossing rate (ZCR). Consonants have high ZCR whereas vowels have low ZCR. Wavelet transform is found promising for voice analysis since it quantizes non-stationary voice signals over time-series using scale and translation parameters. In this way voice intelligibility in the waveforms can be analyzed in each time frame. Conclusions: This review evaluated HKD recognition algorithms to develop a tool for PD speech home-assessment using modern mobile technology. An algorithm that tackles realtime constraints in HKD recognition based on the review synthesis is proposed. We suggest that speech features may be further processed using wavelet transforms and used with a neural network for detection and quantification of speech anomalies related to PD. Based on this model, patients' speech can be automatically categorized according to UPDRS speech ratings.

Formal caregivers' perceptions of quality of care for older people : associating factors

Background: Despite the growing number of studies concerning quality of care for older people, there is a lack of studies depicting factors associated with good quality of care from the formal caregivers' perspective. The aim was to describe formal caregivers' perceptions of quality of care for older people in the community and explore factors associated with these perceptions. In total, 70 nursing assistants, 163 enrolled nurses and 198 registered nurses from 14 communities in central Sweden participated in the study. They filled out the following questionnaires: a modified version of Quality from the Patient's Perspective, Creative Climate Questionnaire, Stress of Conscience Questionnaire, items regarding education and competence, Health Index and Sense of coherence questionnaire. The overall response rate was 57 % (n = 431). Results: In the perceived reality of quality of care respondents assessed the highest mean value in the dimension medical-technical competence and physical technical conditions and lower values in the dimensions; identity-oriented approach, socio-cultural atmosphere and in the context specific dimension. The caregivers estimated their competence and health rather high, had lower average values in sense of coherence and organizational climate and low values in stress of conscience. Conculsions: The PR of quality of care were estimated higher among NA/ENs compared to RNs. Occupation, organizational climate and stress of conscience were factors associated with quality of care that explained 42 % of the variance. Competence, general health and sense of coherence were not significantly associated to quality of care. The mentioned factors explaining quality of care might be intertwined and showed that formal caregivers' working conditions are of great importance for quality of care.