There are in excess of one million people across the UK people living with atrial fibrillation (AF), a long term condition that can lead to stroke and other complications, costing the NHS over £2,200 million per year. However little is known about the experience of living with AF and what patients' perceptions are of the support they receive from health professionals. In order to ensure that patients have the best possible experience of care, healthcare professionals need to have an understanding of how patients view their condition and the type of support they would like to receive from the professionals involved in their care. Although there has been a significant amount of work investigating social support for people with health conditions, there has been little work exploring support provided by healthcare professionals, defined in this study as professional support. This study aimed to investigate and assess the professional support needs of people with AF to develop knowledge and understanding in this field. A theoretical framework for professional support was developed based on the tri-dimensional model of social support and was used to direct the research. Using an exploratory sequential design, a two phase mixed methods study was undertaken. Initially, qualitative interviews were undertaken with patients recruited from outpatient arrhythmia clinics at one National Health Service (NHS) hospital and identified from the perspective of the patient how, when and where healthcare professionals did/did not provide support. Key components of emotional, informational and tangible professional support were identified from thematic analysis of the interview data and used to inform the development of a quantitative questionnaire. Physical activity, exercise and the impact of AF on activity levels were identified by participants as important and so were also included. The quantitative online questionnaire was completed by patient members of the Atrial Fibrillation Association (AFA). To examine relationships between variables, statistical analyses were performed using Fisher's exact test and indicated that people with AF had a range of emotional, informational and tangible professional support needs. Different subgroups of people with AF had different professional support needs: People with more severe symptoms needed more emotional support as well as more tangible support and people with paroxysmal AF needed more informational support. People undergoing ablation as treatment for their AF had specific informational and emotional needs for support. AF played a significant part in the lives of people with AF by modifying activities of daily living and shaping physical activity behaviour and choice of activities. People with AF therefore needed professional support in maintaining and/or increasing their levels of activity. Considering the specificity of professional support, GPs, cardiologists and arrhythmia nurse specialists were identified as most supportive, with GPs and cardiologists also considered as the least helpful at providing support, indicating a variation in professional support. The findings from this study contribute to the limited body of knowledge describing the experience of living with AF and provide healthcare professionals with a unique understanding of how best to provide professional support. The tri-dimensional model provides detailed knowledge of the components of informational, emotional and tangible support that people with AF would like to receive from the healthcare professionals involved in their care. The findings indicate there are differing support needs for different subsets of people with AF demonstrating a need for individualised professional support. The theoretical framework for professional support used in this study provides a model that could be used in future research studies to identify the types of professional support required by patients and to identify subgroups of patients who may require additional professional support. By accurately identifying the needs of patients, this will ensure that healthcare professionals are able to deliver effective patient centred services, leading to an improved patient experience and the delivery of high quality patient care.

Background: Ovarian cancer is the second most common female form of cancer and is considered to be the most aggressive form of gynecological cancer with the highest mortality. This is due to the difficulties in identifying the disease at an early stageWomen who are diagnosed with ovarian cancer face anxiety, feel great uncertainty for the future, fear of relapse and death. They also feel that family relationshipsand other contacts deteriorate, leading to social isolation. Objective: The purpose was to elucidate women's experiences of nursing in ovarian cancer. Method: A literature study with a qualitative approach that is based on ten qualitative articles and an article with a mixed method where the focus is on the qualitative analysis has been used to compile the result. Result: The women's experience of nursing in ovarian cancer resulted in three main categories: communication, support and knowledge, and seven subcategories which are: the need to create a relationship with caregivers, the need for confirmation, the need for individually adapted information, the experience in lack of follow up, the experience in lack of coordination, the experience in lack of competence and understanding of the healthcare staff as well as the need for self-care training. Conclusion: Byhighlighting women's experiences, nurses can create a better understanding of the nursing need that exists to address and manage it by applying patient-centered nursing. / Bakgrund: Ovarialcancer är den näst vanligaste kvinnliga cancerformen och anses vara den aggressivaste formen av gynekologisk cancer med högst mortalitet. Detta beror påsvårigheterna att identifiera sjukdomen i ett tidigt skede. Kvinnor som diagnostiserats med ovarialcancer möter ångest, känner stor osäkerhet inför framtiden, har rädsla för återfall och dödsfall. De upplever även att familjerelationer, samt övriga kontakter försämras vilket leder till social isolering. Syfte: Syftet var att belysa kvinnors upplevelser av omvårdnad vid ovarialcancer. Metod: En litteraturstudie med kvalitativ ansats som baseras på tio kvalitativa artiklar samt en artikel med blandad metod där fokus läggs på den kvalitativa analysen har använts för att sammanställa resultatet. Resultat: Kvinnornas upplevelse av omvårdnad vid ovarialcancer resulterade i tre huvudkategorier: kommunikation, stöd ochkunskapsamt sju subkategorier vilka är: behov av att skapa en relation till vårdgivaren, behovet av bekräftelse, behovet av individuellt anpassad information, upplevelsen av bristande uppföljning, upplevelsen av bristande samordning, upplevelsen av bristande kompetens och förståelse hos vårdpersonalensamt behovet av utbildning i egenvård. Slutsats: Genom att lyfta fram kvinnornas upplevelser kan sjuksköterskor skapa bättre förståelse för det omvårdnadsbehovet som finns för att kunna bemöta och hantera det genom att tillämpa personcentrerad omvårdnad.

Background: Liver cirrhosis is a global health problem and a national health problem in Egypt. There is a lack of literature on Health-Related Quality of Life (HRQOL) and symptoms experience of liver disease and cirrhotic patients in Middle East, particularly in Egypt. Aims: This PhD had three major aims: First aim: To describe HRQOL of Egyptian liver cirrhotic patients and to identify and evaluate the factors associated with (HRQOL) physical and mental health domains. Second aim: To explore and describe experienced symptoms (prevalence, severity and hindrance) in Egyptian cirrhotic patients and to identify and evaluate factors associated with symptoms severity and symptoms hindrance (distress). Third aim: To explore and describe how cirrhotic patients in Egypt perceive social support from spouse, family and friends and to identify and evaluate factors associated with general perceived social support. Method: A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was conducted between June and August 2011. Patients were interviewed to complete a background data sheet, Short Form-36v2 (SF-36), the Liver Disease Symptom Index (LDSI)-2.0 and the Multidimensional Scale of Perceived Social Support (MSPSS). Results: Findings for first aim: The findings showed that all domains and component summary scores [Physical component summary score (PCS) and mental component summary score (MCS)] of the generic SF-36 were below the norm (cut-off score 50), suggesting that patients with liver cirrhosis in Egypt have poor HRQOL. About 87.2% of the patients rated their general health as poor or fair, which means the majority of these patients have low perceived general health. Many socio-demographic and medial factors were shown to be significantly associated with perceived HRQOL. Women, illiterate and unemployed people, and patients with frequent hospitalisation had poor PCS and MCS, while patients with advanced disease stage, increasing number of comorbidities and complications and those admitted to inpatients had significantly poorer PCS only. Perceived social support from a spouse had a statistically significant positive association with PCS and MCS, while perceived social support from family and friends had a statistically significant positive association with MCS only. Also, severity and hindrance of symptoms significantly correlated with PCS and MCS. Using stepwise multiple linear regression analysis, two models were developed to identify factors associated with PCS (Model 1) and MCS (Model 2) health. Model 1 could significantly explain 19% of the variation in PCS (R2 = 0.190, R2adj = 0.180, p = 0.0005), and four factors (symptoms severity, disease stage, comorbidities and employment status) were significantly (p ≤ 0.02) associated with PCS. Model 2 could significantly explain 31.7% of the variation in MCS (R2 = 0.317, R2adj = 0.308, p = 0.0005), and four factors (symptoms severity, employment status, perceived spouse support and perceived family support) were associated (p ≤ 0.04) with MCS. The key findings of this study were that severity of symptoms and social support from spouse and family were associated with HRQOL. Where patients with high symptoms severity were likely to report poor PCS and MCS; and patients with low perceived social support were likely to report poor MCS. Symptoms severity contributed significantly in explaining 28.7% of the variation in PCS and 43.6% of the variation in MCS. Findings for second aim: This study found that the majority of patients had one or more of a wide range of symptoms and social problems. Two-thirds of patients reported joint pain (78.3%), decreased appetite (75.6%) and memory problems (77.3%). Joint pain and depression were reported to have the biggest impact on daily life. Symptoms severity and distress were significantly higher among patients who were: female, illiterate, unemployed, and who had advanced cirrhosis with more complications and comorbidities (p ≤ 0.006). Symptoms severity (r=-0.206) and symptoms distress (r=-0.205) were negatively associated with perceived social support (p=0.005). Stepwise regression analysis showed that the regression model could significantly explain 19.6% of the variation in symptoms severity (R2 = 0.196, R2adj = 0.180, p = 0.0005), and 14% of the variation in hindrance of symptoms (R2 = 0.140, R2adj = 0.132, p = 0.0005). Being female, having an increasing number of liver disease complications, and having low perceived support from spouse were significantly associated with high-perceived symptoms severity and hindrance (p≤0.01). Findings for third aim: This study found that social support score was relatively high among patients with cirrhosis in Egypt (total score mean of MSPSS was 2.02± standard deviation (0.537), while perceived support from spouse was the highest source of support. 67.5% of the patients felt their spouse is around when they need him/her and 71.7% of them share their joys and sorrows with their spouse. Likewise, 64.9% of married people feel their spouse cares about their feelings. In relation to the perception of adequacy of family support, it was observed that 52.6% felt that their families do not really try to help them. At the same time, 52.1% reported that they got the emotional help and support that they needed from their families. Regarding perceived support from friends, more than half of the patients reported that their friends do not really try to help them (57.9%), they cannot count on their friends when things go wrong (65.6%) and they cannot talk about their problems with their friends (56.4%). There was a significantly positive association between the perception of social support and general health perception (GHP), suggesting that when social support decreases GHP also decreases or and vice versa (r= 0.208, p = 0.0005). Stepwise regression analysis showed that the regression model could significantly explain 10.9% of the variation in perceived social support (R2 = 0.109, R2adj = 0.100, p = 0.0005). Marital status, gender, age and employment status were significantly associated with general perceived social support (p ≤ 0.01), while unmarried, females, unemployed and elderly cirrhotic patients were vulnerable groups that were likely to perceive low social support. Overall discussion and conclusion: This is the first study to investigate HRQOL, symptoms experience and perceived social support in patients with liver cirrhosis in Egypt. All aspects of HRQOL of Egyptian cirrhotic patients were poor, and they were experiencing various symptoms that can affect their daily life. However, social support was found to be related to perceived symptoms severity and perceived poor mental health. Hence, social support may alleviate suffering for certain cirrhotic patients. Nurses have a responsibility to assess and treat symptoms that cirrhotic patients experience, particularly such treatable symptoms as depression, pain and decreased appetite. Also, nurses should involve the patient’s family in any plan of care. Future intervention studies that aim to develop programs to relieve treatable symptoms and enhance social support are also recommended.

Cette recherche a pour but d’étudier le rapport à l’école et à la scolarisation de parents d’élèves récemment immigrés au Québec. Plus précisément, elle étudie les représentations sociales (RS) de ces parents sur les systèmes scolaires de leurs sociétés d’accueil et d’origine ainsi que les stratégies qu’ils déploient pour soutenir l’expérience socioscolaire de leurs enfants dans le contexte scolaire québécois. L’originalité de notre étude réside à la fois dans le recours aux RS pour étudier le rapport à l’école des parents, dans la considération de leur situation prémigratoire et dans le croisement de deux points de vue sur la situation d’intérêt, soit celui de parents récemment immigrés ainsi que d’intervenants et d’intervenantes communautaires scolaires interculturels (ICSI). Ancrée dans une démarche qualitative interprétative exploratoire, notre collecte de données s’est faite auprès de six ICSI (6) et de vingt-cinq parents d’élèves québécois récemment immigrés (25). Les deux groupes de sujets ont été rencontrés dans le cadre d’entrevues semi-dirigées. La technique d’associations libres a aussi été mise à profit auprès des parents, afin de favoriser l’accès à la complexité de leurs RS (Carassus et Dosquet, 2010; Vidal, Rateau et Moliner, 2006). Selon nos résultats de recherche, les RS des parents récemment immigrés sur le système scolaire québécois s’ancrent plus largement dans leur expérience migratoire : motifs d’immigration et conditions d’établissement expérimentées dans la société d’accueil. Aussi, nos résultats ont montré la pertinence de structurer les RS des parents autour de quatre grands thèmes : l’intégration scolaire, sociale et professionnelle assurée par l’école; le développement intellectuel et la forme scolaire; divers enjeux de socialisation véhiculés à l’école et dans la société québécoises; les relations école-familles immigrantes. Dans ce sens, bien que les parents mettent en contraste divers éléments des systèmes scolaires de leurs sociétés d’accueil et d’origine, leurs RS du système scolaire québécois sont surtout ancrées dans des perspectives d’avenir pour leurs enfants, interpellant fortement la capacité de l’école à intégrer ces derniers dans les milieux scolaires et socioprofessionnels de la société d’accueil. Aussi, nos données convergent vers le désir de nombreux parents que le capital humain de leurs enfants soit actualisé à leur plein potentiel dans le contexte migratoire. Nos résultats montrent aussi l’ancrage de l’école à un moment et dans un espace donnés, alors que les RS des parents illustrent souvent des valeurs socioculturelles véhiculées à l’école québécoise et des modalités des relations école-familles pas toujours connues des parents récemment arrivés au Québec. Le croisement des regards des parents et des ICSI révèle aussi de nombreuses stratégies mobilisées par les parents récemment immigrés pour soutenir l’expérience socioscolaire de leurs enfants dans la société d’accueil que nous avons catégorisées ainsi : stratégies déployées «à la maison», stratégies déployées «à l’école» et stratégies déployées «en lien avec la communauté». Nos résultats tendent à montrer que l’actualisation du rôle de parent d’élève «à l’école» est soumise à des modalités plutôt instituées par le milieu scolaire. Aussi, les résultats de notre recherche mettent en lumière un décalage intéressant entre la mobilisation et la proactivité accrues de nombreux parents récemment immigrés ainsi que l’invisibilité de ces dernières pour le milieu scolaire, surtout lorsque les stratégies sont déployées dans l’intimité du milieu familial ou dans des contextes liés à la communauté. Le croisement des données recueillies auprès des parents et des ICSI permet aussi de préciser les besoins d’accompagnement des parents récemment immigrés pour une meilleure maîtrise des enjeux du milieu scolaire de la société d’accueil et permet de faire ressortir des pratiques des milieux scolaires et communautaires qui semblent soutenir cet accompagnement. De manière générale, nos résultats convergent vers la pertinence d’accorder une plus grande considération aux parents dans le processus d’intégration des enfants récemment immigrés à l’école du Québec et de favoriser l’établissement de relations école-familles ancrées dans une perspective de partenariat. Enfin, il semble que l’école ne puisse arriver à elle seule à soutenir l’intégration des familles récemment immigrées dans le milieu scolaire québécois ainsi que la réussite scolaire des enfants et que les ICSI représentent des ressources stratégiques à cet égard. / This research aims to study newcomer students’ immigrant parents’ relationship in regards to school and education in Quebec. Specifically, we examined these parents’ social representations (SR) with respect to the host and home societies’ school systems as well as the strategies they deploy to support their children’s educational experience in Quebec’s school context. The originality of our study lies in the use of the SR concept to explore the relationship between newcomer parents in Quebec and school, the consideration of their premigratory situation and, in crossing two views on the situation of interest: newcomer immigrant parents and community, education and cross-culture worker (CECW). In the context of a qualitative interpretative exploratory approach, our data collection was done with six CECW (6) and twenty-five newcomer students’ immigrant parents in Québec (25). In both cases, we have made semi-structured interviews. Also, to access the complexity of SR, we used the technique of free associations with the parents (Carassus & Dosquet, 2010; Vidal & al., 2006). According to our results, parents’ representations of school system in Quebec were mostly based on their migratory experience: reasons for migrating and conditions of establishment in the host society. Also, our results revealed the pertinence to structure parents' SR around four main themes: children’s school, social and professional integration into the host society; intellectual development and school structure; various socialization issues conveyed into school and into society; relationship between school and immigrant families. In this regard, although parents compare various elements between school in the host and home societies, their SR of school in Quebec are generally related to the future of their children, and these SR highly raise school’s ability to integrate their children in the school and socio-professional contexts. Also, our data converge to express many parents’ the desire to see their children’s human capital being at its full potential in the migratory context. Our results also shows that school is rooted in a specific context, while the parents’ SR often illustrate socio-cultural values conveyed in Quebec’s school, and while the terms of relationship between school and families are not always known by immigrant parents. These two points of view - those of parents and CECW -, when put into perspective, also reveals the several strategies mobilized by immigrant parents to support their children's educational experience in the host society. These strategies have been categorized as follows: strategies deployed "at home", "in school" and "with community". Our results suggest that the actualisation of the role of "in school" students’ parents is subject to some terms imposed by school. Also, our results highlight an interesting gap between parents mobilization and proactivity to support their children, and the fact that their actions are invisible for school, especially when strategies are deployed in the privacy of the family environment, or in collaboration with the community. Putting into perspective these two points of view also led us to clarify the support needed by newly immigrated parents to manage different issues related to school and schooling in the host society. Also, we have been able to identify practices deployed by school and community that are likely to support newly immigrated parents in the school context. Overall, our results converge to the pertinence of giving greater consideration to parents in their children’s integration process in Quebec’s school and on the necessity of encouraging greater partnerships between school and families. Finally, it seems that school cannot ensure on its own the integration of newcomer immigrant families and the academic achievement of newly immigrated students in Quebec's schools. In this regard, ICSI seem to be strategic resources.