Bakgrund: Andelen vårdtagare som är i behov av palliativ vård i hemmet ökar och därmed också andelen närståendevårdare som utgör en viktig del av vården. Det är en svår övergång att gå från närstående till närståendevårdare och därför är det viktigt för vårdpersonalen att främja närståendevårdarens roll som en god resurs i vårdteamet. Syfte: Att beskriva närståendevårdares erfarenheter av palliativ vård i hemmet. Metod: En litteraturöversikt med en sammanställning och analys av totalt tolv vetenskapliga kvalitativa artiklar. Resultat: Tre kategorier framkom i resultatet; interaktion med vårdpersonalen, utsatthet samt teamarbete och delaktighet. Närståendevårdarna hade ett stort behov av en god vårdrelation och kommunikation med vårdpersonalen och de ville ha en tydlig roll i vårdteamet. De ville även bli bekräftade och sedda som en individ med egna behov samtidigt som de tyckte det var problematiskt att sätta sina egna behov i främsta rummet. Slutsatser: Närståendevårdares erfarenheter av palliativ omvårdnad i hemmet har visat sig vara mångtydigt på grund av individuella behov. Det är en balansgång att som vårdpersonal se till de aktuella behoven och kunna bemöta närståendevårdare på bästa sätt. Vårdpersonal ska, för att optimera den palliativa hemsjukvården, individ- och situation anpassa med hjälp närståendevårdarna som en stor del av teamsamverkan. / Background: The proportion of patients who are in need of palliative care in the home increases and therefor the proportion of informal carers’ increase. It is a difficult transition to go from next of kin to informal carer and therefore it is important for the professional care team to promote informal caretaking role as a good resource in the care team. Objective: To describe informal carers’ experience of palliative home care. Method: A literature review with summary and analysis of twelve qualitative articles. Results: Three main categories emerged in the results; interaction with caregivers, exposure and teamwork and participation. Informal carers had a great need of a good care relationship and communication with the medical staff and they wanted a clear role in the care team. They wanted to be confirmed and seen as individuals with individual needs while they thought it was problematic to put their own needs first. Conclusions: Carers experiences of palliative care in the home has proved to be ambiguous due to individual needs. There is a balancing act to how healthcare professionals have to meet the current needs and to respond to informal carers in the best way. It is therefore important for the healthcare professionals to individualize and adapt the care regarding different situations in palliative home care with help from the informal carers as a big part of the teamwork to optimize the care.

Bakgrund: Medellivslängden i Sverige ökar vilket leder till en ökad äldre befolkning. För att kunna bo hemma så länge som möjligt kan de äldre behöva få hjälp från hemvården. Syfte: Att undersöka vilka faktorer som upplevs påverkar de äldres tillfredsställelse av vården samt vad som är viktigt för de personer som får hjälp. Metod: En deskriptiv kvalitativ intervjustudie. Semi-strukturerade intervjuer gjordes med 11 brukare från två olika kommunala hemvårdsområden. Resultat: Personal och Utförande var två huvudkategorier som kom fram av analysen. Informanterna beskrev sina upplevelser och vad som var viktigt för dem inom dessa ramar. Kategorin Personal kunde delas upp i två underkategorier; Yrkeskompetens och Bemötande. Utförande delades in i underkategorierna; Hemtjänsten – ett serviceperspektiv, Självbestämmande, Kontinuitet och Trygghet.   Konklusion: För att man som utförare av hemtjänst skall förbättra vården är det viktigare att fokusera på de processrelaterade faktorerna som har en stor betydelse för hur brukarna upplever hemvården. Genom att lägga stor vikt vid personalens sociala kompetens vid rekrytering samt att involvera brukaren och dennes familj i vården och utformandet av den kan positiva upplevelser av vården skapas. Detta ser ut att kunna skapa ökat välbefinnande hos brukarna. / Background: The average age in Sweden increases which leads to an increased population of old people. In order to live in their own homes as long as possible, elderly people may be in need of help from the community home-services. Aim/objectives:The goal of this study was to examine variables perceived to affect older people’s satisfaction of home care services and what they emphasize important in the care.  Design: Descriptive qualitative study with interviews. Semi-structured interviews are done with 11 clients receiving care from two different community home-service areas. Results: ’Staff’ and ‘Services’ were the main categories of the results. The clients described their experiences and what they assumed as important for them. The category ‘Staff’ were divided into sub-categories: ‘Professional competence’ and ‘attitudes from staff’. ‘Services’ were divided into four other sub-categories: ‘the community home-service- a service perspective’ ‘self-autonomy’, ‘continuity’ and ‘safety’. Conclusions: The health care providers for the home care services should focus on improvements regarding process related factors, because they are important for the client’s experiences of the home care services. When recruiting new persons for a job in the home care services, the focus should be on his or hers social competence. Furthermore, to involve the client and his or hers family in the care may create positive experiences and increase the clients wellbeing.

TITLE: Life of Family with a Child with the Toriello-Carey Syndrome AUTHOR: Bc. Ivana Valuchová DEPARTMENT: Department of Special Pedagogy SUPERVISOR: PhDr. Monika Mužáková, PhD. ABSTRACT: The thesis deals with the family of a child with a disease of rare Toriello-Carey syndrome. This is an isolated case of this disease in Europe. The main objective of the thesis is to process of complex information relating to disease of Toriello-Carey syndrome and to determine impacts of the syndrome on the quality of life of individuals and their families. The thesis is divided to theoretical and empirical parts. The theoretical part contains three chapters. The first theoretical chapter (Introduction) is devoted to detail syndrome- its etiology, symptoms, context, history, clinical assessment, treatment and prognosis. Other theoretical chapters describe a family with a child with disabilities and specifics of families with rare diseases. The empirical part of the thesis is focused on a research and mapping the life of the family of a child with Toriello-Carey syndrome by analyzing the documents and semi-structured interview with the parents and an active observation boy. KEYWORDS: Toriello-Carey syndrome; Child; Symptoms; Home care; Rehabilitation

La thèse interroge la possibilité d'une régulation unique du secteur des services à la personne tel qu'il a été institutionnellement délimité par le Plan Borloo de 2005. Nous y défendons l'idée que, si le Plan Borloo n'a pas permis de générer un secteur unifié, (au sens que lui donne les approches en termes de régulation sectorielle), les dispositifs visant la construction d'un marché des services à la personne, qu'il a introduit, sont mobilisés à la fois par les nouveaux entrants et par les acteurs historiques du champ, mais de façon non homogène et différente de ce que le Plan anticipait.Il en résulte une situation de double crise (crise des enseignes et crises des associations autorisées) que les conclusions de la thèse permettent d'éclairer. / My thesis tests the existence of a unique sectorial-based regulation for lifestyle and domiciliary care services as it was institutionally delimited and thought by the French Plan Borloo (2005). I defend the idea that the Plan Borloo has not generated a unified sector configuration (as defined by sectorial-based regulation approaches). The Plan Borloo has introduced institutional arrangements that aim to constructing a market for lifestyle and home care services. Theses arrangements are mobilised both by new players and by historical suppliers but non-homogenously and differently than expected by the Plan. The consequence is a double crisis (crisis of the new player “brand names” and crisis of the historical third sector actors) that my conclusion explains.

In accordance with the Social Services, all Swedish municipalities work to ensure that older people should be given the opportunity to live independently in safe conditions. For that reason they offer them extra help and support in their own homes. This help and this support is provided by the home care and their health care workers in form of assistant nurses and orderlies. The National Board of Health and Welfare emphasizes in several of its investigations that competence in elderly care is one of the major challenges in the future. They consider this a must to meet the needs that come with an aging population and to meet the current lack of quality in health care. According to The National Board of Health and Welfare, competence development is the main element to ensure quality in elderly care. Therefore they establish that all health care workers should as a minimum have basic professional skills for their work in elderly care. The aim of this study has been to investigate whether the National Board's goal that all staff in elderly care should have the basic professional skills is relevant to professional categories: assistant nurses and orderlies in home care. The study has been based on sociological theory of professions that intend to explain the relations between occupational groups, how professional status is developed and maintained within the organization. In order to meet the aim of this study a total of twelve semi-structures and qualitative interviews have been conducted with nurses and orderlies at three different home care services. The results show us how differences between the occupational groups may affect the status and reputation of the profession when questions of competence emerges.

Med palliativ vård menas att inriktningen på vården är att lindra symptomen, möjligheten att bota sjukdomen finns inte längre. Läkaren ska då försäkra sig om att livsuppehållande behandlingar inte längre kan påverka sjukdomsförloppet, ta största möjliga hänsyn till patientens önskemål och ta det avgörande beslutet att avsluta eller avbryta en livsuppehållande behandling. Palliativ vård är på många områden numera utbyggd till avancerade hemsjukvårdsteam. Tidigare studier har i huvudsak fokuserat på anhöriga eller vårdpersonal och då särskilt sjuksköterskans upplevelser av att vårda palliativa patienter. Därför är det viktigt att tydliggöra patientperspektivet. Syftet med denna litteraturstudie var att beskriva befintlig forskning om hur patienter inom palliativ vård upplever den sista tiden i livet. Metoden som använts är litteraturstudie och resultatet är funnit i 10 vetenskapliga artiklar. Resultatet redovisas med hjälp av fyra kategorier; Hopp och hopplöshet, Mening och maktlöshet, Tillgänglighet och ensamhet samt Acceptans. Slutsatsen är att den som är allvarligt sjuk och står inför döden bör mötas och behandlas av palliativ vård som grundas i hopp, mening, tillgänglighet och acceptans. För att förbättra den sista tiden i livet för patienten inom palliativ vård när det gäller bevarad värdighet finns det, med stöd i studiens resultat, specifika aspekter att beakta. Patienten bör delta i sin vård så långt det är möjligt; Hopp är inte alltid kopplat till bot; Vårdarna bör underlätta sociala kontakter; Vårdarna bör vara tillgängliga, även när det inte finns något att säga; Allvarlig information bör ges stegvis; och Teamarbete med flera olika professioner.

In order to compile a comprehensive representation of the available guidelines regarding interface design for an elderly audience, the available literature was scoured. A prototype interface was then produced based on the guidelines produced from this in combination with previously established needs among elderly that are subject to home care. Six subjects participated in a series of usability test that were implemented to evaluate the design of the prototype, along with complementary interviews that served to investigate the subject’s attitudes towards such a product that the prototype represents in general. The chosen method for these usability tests proved problematic and appropriate measures had to be implemented in order for the tests to produce adequate data. The results of the attuned method showcased an expected animosity towards the type of technology used in the tests while at the same time demonstrating the perceived redundancy in the product due to already established systems in use by the subjects as well as the requirements for such a product to be viable. That is primarily the extended ability to contact and/or communicate with caregivers that such a product offers.

Le vieillissement de la population est une tendance mondiale. Selon les estimations, en 2050, 2,1 milliard de personnes seront âgés de 60 ans ou plus. Les logiciels d’aide aux soins de santé à domicile (ou en anglais Healthcare Supportive Home- HSH Systems) ont été proposés pour répondre à la forte demande de soins de santé à distance pour les personnes âgées vivant seules. Étant donné que les équipes de professionnels de la santé ont besoin de collaborer pour continuellement surveiller l’état de santé des patients souffrant de maladies chroniques, il est nécessaire de faire coopérer les systèmes logiciels d’e-santé préexistants. Cependant, les systèmes de HSH actuels sont propriétaires, monolithiques, fortement couplés et coûteux ainsi que la plupart d’entre eux ne considèrent pas les interactions dynamiques avec systèmes de e- Health fonctionnant à l’intérieur du domicile (e.g., des robots compagnons interactifs ou moniteurs d’activité) ni à l’extérieur de la maison. Ces systèmes sont parfois conçus et fondés sur des législations locales, des configurations des systèmes de santé spécifiques (e.g., publique, privé ou hybride), des plans nationaux de soins de santé, et des ressources technologiques disponibles ; leur réutilisation dans d’autres contextes est donc souvent limitée. De ce fait, les systèmes de HSH fournissent une vue limitée de l’état de santé des patients, sont difficiles à évoluer en fonction de l’évolution de la santé des patients et ne permettent pas la surveillance constante des patients. Ils ont des limites sérieuses pour aider l’autogestion des multiples maladies chroniques. En réponse à ces problématiques, cette thèse propose HomecARe, une architecture de référence pour permettre le développement des systèmes logiciel de HSH de qualité. HomecARe considère les systèmes HSH comment Systèmes-de-Systèmes (en anglais Systems-of- Systems - SoS) (i.e., systèmes complexes à grande échelle qui sont composées de systèmes hétérogènes, distribués, et avec indépendance opérationnelle et managériale), qui réalisaient leurs missions (e.g., l’amélioration de la qualité de vie des patients) grâce aux comportements qui émergent des collaborations entre les différents systèmes constitutifs. Pour établir HomecARe, un processus systématique pour la conception des architectures de référence a été adopté. HomecARe représente la connaissance du domaine et des solutions architecturales (e.g., patrons et stratégies d’architecture) en utilisant les points de vue architecturales des concepts, missions, et qualité. Pour évaluer HomecARe, un cas d’étude a été mené. Dans cette étude, HomecARe a été utilisé dans la conception de l’architecture logicielle du DiaManT@Home, un système de HSH pour l’assistance aux patients diabétiques. Les résultats montrent qui HomecARe est une solution viable pour guider le développement des systèmes de HSH réutilisables, interopérables, fiables, sécurisés, et adaptatifs. Cette thèse apporte d’importantes contributions dans les domaines d’e-santé, architectures logicielles, et architectures de référence de SoS. / Population ageing has been taking place all over the world, being estimated that 2.1 billion people will be aged 60 or over in 2050. Healthcare Supportive Home (HSH) Systems have been proposed to overcome the high demand of remote home care for assisting an increasing number of elderly people living alone. Since a heterogeneous team of healthcare professionals need to collaborate to continually monitor health status of chronic patients, a cooperation of pre-existing e-Health systems, both outside and inside home, is required. However, current HSH solutions are proprietary, monolithic, high coupled, and expensive, and most of them do not consider their interoperation neither with distributed and external e-Health systems, nor with systems running inside the home (e.g., companion robots or activity monitors). These systems are sometimes designed based on local legislations, specific health system configurations (e.g., public, private or mixed), care plan protocols, and technological settings available; therefore, their reusability in other contexts is sometimes limited. As a consequence, these systems provide a limited view of patient health status, are difficult to evolve regarding the evolution of patient’s health profile, do not allow continuous patients monitoring, and present limitations to support the self-management of multiple chronic conditions. To contribute to solve the aforementioned challenges, this thesis establishes HomecARe, a reference architecture for supporting the development of quality HSH systems. HomecARe considers HSH systems as Systems-of-Systems (SoS) (i.e., large, complex systems composed of heterogeneous, distributed, and operational and managerial independent systems), which achieve their missions (e.g., improvement of patients’ quality of life) through the behavior that emerges as result of collaborations among their constituents. To establish HomecARe, a systematic process to engineer reference architectures was adopted. As a result, HomecARe presents domain knowledge and architectural solutions (i.e., architectural patterns and tactics) described using conceptual, mission, and quality architectural viewpoints. To assess HomecARe, a case study was performed by instantiating HomecARe to design the software architecture of DiaManT@Home, a HSH system to assist at home patients suffering of diabetes mellitus. Results evidenced HomecARe is a viable reference architecture to guide the development of reusable, interoperable, reliable, secure, and adaptive HSH systems, bringing important contributions for the areas of e-Health, software architecture, and reference architecture for SoS.

With the increasing demands of rising medical costs in combination with a boom in elderly patients in need of quality patient care medical practices are being stressed. Patient to nurse ratios are increasing and government spending in the medical domain is at an all-time high threatening the futures of government medical programs such as Medicare and Medicaid. In this thesis we propose a framework for the monitoring of a patient's vital statistics in a home-based setting using a mobile smart device. We believe that in taking advantage of the wireless sensor technology which is readily available today we can provide a solution that is both economically and socially viable offering a solid quality of healthcare in a comfortable and familiar environment. Our framework exposes both 802.11 and Bluetooth wireless protocol transmitting medical sensor devices using an Android platform device as a monitoring hub. / by Mark Conaster. / Thesis (M.S.C.S.)--Florida Atlantic University, 2011. / Includes bibliography. / Electronic reproduction. Boca Raton, Fla., 2011. Mode of access: World Wide Web.

Uppsatsen syftade till att förstå hur unga vuxna som tidigare varit samhällsplacerade retrospektivt beskriver sin skolgång. Fem unga vuxna i åldrarna 21-26 år intervjuades i en kvalitativ studie. Teorin KASAM hjälpte oss att identifiera de resurser och faktorer som bidrog till graden av informanternas känsla av sammanhang. Resultatet visade att samtliga intervjupersoner blev placerade i olika åldrar och hade skilda erfarenheter av sin skolgång under placeringstiden. Samtliga intervjupersoner fick stöd från vuxna med sina studier vilket hade en positiv inverkan på deras skolgång. Resultatet visade även att vissa informanter hade en negativ erfarenhet av skolgången under placeringstiden på grund av mobbning, psykisk ohälsa och ett flertal omplaceringar. Då vi endast intervjuade fem personer gick det inte att generalisera resultatet till en större kontext i förhållande till tidigare forskning. Gemensamt för samtliga informanter var att de hade läst på högskolenivå eller hade planer på att göra det. / The aim of this study was to understand how young adults whom previously had been in out-of-home care retrospectively described their schooling. Five young adults between the ages of 21-26 were interviewed in a qualitative study. The theory KASAM helped identify the resources and factors that influenced the informants’ sense of coherence. The results showed that the informants were put in out-of-home care at different ages and had different experiences with their studies while in care. They received help from adults in regards to their studies, which had a positive impact on their schooling. Some informants had negative experiences from their schooling while in care caused by bullying, mental health issues and having to move multiple times. Because of our small sample we could not generalize the results. What the informants had in common was the fact that they had college-level education or were planning to receive it.