Partner relationship in couples living with atrial fibrillation

The aim of this thesis was to describe and explore how the partner relationship of patient–partner dyads isaffected following cardiac disease and, in particular, atrial fibrillation (AF) in one of the spouses. The thesis is based on four individual studies with different designs: descriptive (I), explorative (II, IV), and cross-sectional (III). Applied methods comprised a systematic review (I) and qualitative (II, IV) and quantitative methods (III). Participants in the studies were couples in which one of the spouses was afflicted with AF. Coherent with a systemic perspective, the research focused on the dyad as the unit of analysis. To identify and describe the current research position and knowledge base, the data for the systematic review were analyzed using an integrative approach. To explore couples’ main concern, interview data (n=12 couples) in study II were analyzed using classical grounded theory. Associations between patients and partners (n=91 couples) where analyzed through the Actor–Partner Interdependence Model using structural equation modelling (III). To explore couples’ illness beliefs, interview data (n=9 couples) in study IV were analyzed using Gadamerian hermeneutics. Study I revealed five themes of how the partner relationship is affected following cardiac disease: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Study II showed that couples living with AF experienced uncertainty as the common main concern, rooted in causation of AF and apprehension about AF episodes. The theory of Managing Uncertainty revealed the strategies of explicit sharing (mutual collaboration and finding resemblance) and implicit sharing (keeping distance and tacit understanding). Patients and spouses showed significant differences in terms of self-reported physical and mental health where patients rated themselves lower than spouses did (III). Several actor effects were identified, suggesting that emotional distress affects and is associated with perceived health. Patient partner effects and spouse partner effects were observed for vitality, indicating that higher levels of symptoms of depression in patients and spouses were associated with lower vitality in their partners. In study IV, couples’ core and secondary illness beliefs were revealed. From the core illness belief that “the heart is a representation of life,” two secondary illness beliefs were derived: AF is a threat to life, and AF can and must be explained. From the core illness belief that “change is an integral part of life,” two secondary illness beliefs were derived: AF is a disruption in our lives, and AF will not interfere with our lives. Finally, from the core illness belief that “adaptation is fundamental in life,” two secondary illness beliefs were derived: AF entails adjustment in daily life, and AF entails confidence in and adherence to professional care. In conclusion, the thesis result suggests that illness, in terms of cardiac disease and AF, affected and influenced the couple on aspects such as making sense of AF, responding to AF, and mutually incorporating and dealing with AF in their daily lives. In the light of this, the thesis results suggest that clinicians working with persons with AF and their partners should employ a systemic view with consideration of couple’s reciprocity and interdependence, but also have knowledge regarding AF, in terms of pathophysiology, the nature of AF (i.e., cause, consequences, and trajectory), and treatments. A possible approach to achieve this is a clinical utilization of an FSN based framework, such as the FamHC. Even if a formalized FSN framework is not utilized, partners should not be neglected but, rather, be considered a resource and be a part of clinical caring activities. This could be met by inviting partners to take part in rounds, treatment decisions, discharge calls or follow-up visits or other clinical caring activities. Likewise, interventional studies should include the couple as a unit of analysis as well as the target of interventions.

Conditions de vie des personnes âgées en Afrique Subsaharienne : cas de la vie dans un ménage à génération coupée au Niger

Comme dans la plupart des pays francophones d’Afrique Subsaharienne, la question du vieillissement ou la situation des personnes âgées ne sont pas encore d’actualité au Niger, principalement à cause de la jeunesse de sa population d’une part et d’un intérêt plus porté sur les enfants, les adolescents et les mères d’autre part. Pourtant le Niger fait face à une crise économique sans précédent qui peut avoir des conséquences néfastes sur les conditions de vie des personnes âgées. D’un côté, selon la coutume, la personne âgée (généralement grand parent) s’occupe principalement des petits enfants (orphelins ou non) qui lui sont confiés par leurs parents vivant dans la même localité ou ailleurs, ou qui sont décédés. De l’autre, l’absence d’un jeune adulte dans un ménage où vit au moins une personne âgée est considérée comme un phénomène social préoccupant dans les pays à forte prévalence de VIH/SIDA. Le Niger fait partie des pays où la proportion des personnes âgées vivant avec des petits enfants en l’absence de leurs parents adultes est la plus élevée. Cependant, malgré une forte mortalité adulte, l’absence de données fiables ne permet pas de le classer parmi les pays à forte mortalité adulte due au VIH/SIDA. La raison de cette situation est donc à chercher dans les différences individuelles et communautaires. Jusqu’au début des années 1990, la plupart des études sur les personnes âgées réalisées en Afrique Subsaharienne étaient basées sur les études qualitatives, tandis que les plus récentes sont faites à partir des données des recensements ou enquêtes sociodémoraphiques et économiques. Les conditions de vie des personnes âgées et les conséquences de la pauvreté et du VIH/SIDA sur celles-ci sont les principaux thèmes jusque-là couverts à l’aide des données existantes. Mais, il manque encore de données longitudinales essentielles à l’analyse de certains aspects du cycle de vie des personnes âgées. L’étude n’étant pas sociologique, c’est à l’aide de données démographiques quantitatives, plus précisément le recensement général de la population, que nous tenterons d’expliquer le phénomène sur une base exploratoire. L’analyse au niveau individuel a été faite à l’aide de la régression logistique sous STATA, tandis qu’au niveau contextuel, nous avons utilisé l’analyse multiniveau à l’aide du logiciel HLM (version 6.0). Les résultats indiquent que la vie en l’absence d’un jeune adulte et dans un ménage à génération coupée dépendent principalement du statut sociodémographique de la personne âgée au Niger. Par exemple, il ressort que le mariage avantage l’homme âgé, tandis que le veuvage l’isole plus que la femme âgée. Au niveau contextuel, ce sont les facteurs socioéconomiques qui influencent les conditions de vie des personnes âgées. L’étude montre, en effet, que le degré d’urbanisation d’une commune augmente le risque d’isolement d’une personne âgée qui y réside, alors que le niveau de pauvreté le réduit. Toutefois, nos résultats sont à prendre avec prudence parce qu’en premier lieu il n’existe pas d’études références sur le sujet tant au Niger que dans la sous-région d’Afrique francophone sahélienne. Ensuite, parce que le phénomène étudié pourrait être mesuré de plusieurs manières en fonction du contexte et des données disponibles, et que l’analyse approfondie des effets du statut matrimonial nécessiterait une plus grande connaissance du phénomène chez les personnes âgées. Enfin, compte tenu de la faible prévalence du VIH/SIDA au Niger, les principaux facteurs explicatifs de la vie dans un ménage à génération coupée (aussi bien pour les personnes âgées que pour les enfants) pourraient être le confiage des enfants ou la mortalité adulte due aux autres causes telles que le paludisme, la tuberculose et les maladies infectieuses. Toutefois, l’absence d’informations relatives à ces aspects dans les données utilisées n’a pas permis de les intégrer dans notre étude. Ainsi, compte tenu de la difficulté d’appréhender les contours du phénomène, les futurs programmes en faveur des personnes âgées au Niger et en Afrique Subsaharienne francophone doivent se baser sur des études concrètes relatives aux dimensions sociale et économique du phénomène. Mots clés : Niger - personnes âgées - conditions de vie - mode de vie - cohabitation intergénérationnelle - études comparatives - absence d’un jeune adulte - ménage à génération coupée - Afrique.

VALIDATION OF THE LONDON CHEST ACTIVITY OF DAILY LIVING SCALE IN PATIENTS WITH HEART FAILURE

Background: The Minnesota Living with Heart Failure Questionnaire (MLHFQ) is a well-validated, commonly-used tool to assess quality of life in patients with heart failure. However, it lacks specific information concerning breathlessness during daily activities. Objective: To determine the validity of the London Chest Activity of Daily Living (LCADL) scale for use in patients with heart failure. Methods: Forty-seven patients with heart failure (57% males, mean age 50 years (standard deviation 9), mean left ventricle ejection fraction 29% (SD 6), New York Heart Association (NYHA) functional class I-III) were included. All subjects first performed a cardiopulmonary exercise test and then responded to the LCADL and the MLHFQ, with guidance from the same investigator. The re-test for the LCADL was applied one week later. Results: LCADL was correlated with MLHFQ (r=0.88; p < 0.0001). LCADL and MLHFQ were also correlated with exercise capacity (r=-0.75 and r=-0.73, respectively; both p < 0.0001). The LCADL was shown to be reproducible (r(i)=0.98). There was a significant difference (p < 0.05) in the LCADL scores between NYHA functional classes I and II, as well as classes I and III, hut not between classes II and III. Conclusion: The LCADL was shown to be a valid measurement of dyspnoea during daily activities in patients with heart failure. This scale could be an additional useful tool for the assessment of patients` dyspnoea during activities of daily living.

Validity of the self reporting questionnaire-20 in epidemiological studies with older adults

This study examined the validity of the self-reporting questionnaire (SRQ-20) in a population-based survey with older adults in Sao Paulo, Brazil. The study sample consisted of 2,008 individuals aged 65 years or more who were living in an economically disadvantaged area of the city. The geriatric mental state (GMS) was used as the gold standard for the assessment of common mental disorders (CMD). The optimal SRQ-20 threshold for case definition was 4/5 (sensitivity = 76.1%, specificity = 74.6%, area under ROC curve = 0.82). Women, older participants and those with lower income were more likely to be misclassified by the questionnaire. The inclusion of older persons with dementia or psychosis did not change the ability of the SRQ-20 to identify cases of CMD. The SRQ-20 may be a useful instrument to be used in large epidemiological studies in resource-poor settings for the identification of cases of depression and anxiety in later life. The performance of the SRQ-20 among older adults was similar to that observed with the adult population in Brazil.

DISCORDANCE BETWEEN BODY MASS INDEX AND ANTHROPOMETRIC MEASUREMENTS AMONG HIV-1-INFECTED PATIENTS ON ANTIRETROVIRAL THERAPY AND WITH LIPOATROPHY/LIPOHYPERTROPHY SYNDROME

Introduction: Highly Active Antiretroviral Therapy (HAART) has improved and extended the lives of thousands of people living with HIV/AIDS around the world. However, this treatment can lead to the development of adverse reactions such as lipoatrophy/lipohypertrophy syndrome (LLS) and its associated risks. Objective: This study was designed to assess the prevalence of self-reported lipodystrophy and nutritional status by anthropometric measurements in patients with HIV/AIDS. Methods: An observational study of 227 adult patients in the Secondary Immunodeficiencies Outpatient Department of Dermatology, Hospital das Clínicas, Faculty of Medicine, University of São Paulo (3002 ADEE-HCFMUSP). The sample was divided into three groups; Group 1 = 92 patients on HAART and with self-reported lipodystrophy, Group 2 = 70 patients on HAART without self-reported lipodystrophy and Group 3 = 65 patients not taking HAART. The nutritional status of individuals in the study sample was determined by body mass index (BMI) and percentage of body fat (% BF). The cardiovascular risk and diseases associated with abdominal obesity were determined by waist/hip ratio (WHR) and waist circumference (WC). Results: The prevalence of self-reported lipoatrophy/lipohypertrophy syndrome was 33% among women and 59% among men. Anthropometry showed depletion of fat mass in the evaluation of the triceps (TSF) in the treatment groups with HAART and was statistically independent of gender; for men p = 0.001, and for women p = 0.007. Similar results were found in the measurement of skin folds of the upper and lower body (p = 0.001 and p = 0.003 respectively). In assessing the nutritional status of groups by BMI and % BF, excess weight and body fat were more prevalent among women compared to men (p = 0.726). The WHR and WC revealed risks for cardiovascular and other diseases associated with abdominal obesity for women on HAART and with self-reported LLS (p = 0.005) and (p = 0.011). Conclusions: Anthropometric measurements were useful in the confirmation of the prevalence of LLS. BMI alone does not appear to be a good parameter for assessing the nutritional status of HIV-infected patients on HAART and with LLS. Other anthropometric measurements are needed to evaluate patients with the lipoatrophy/lipohypertrophy syndrome.

Predictors of HIV-protection behaviour in HIV-positive men who have sex with casual male partners: a test of the explanatory power of an extended Information-Motivation-Behavioural Skills model.

This prospective study applies an extended Information-Motivation-Behavioural Skills (IMB) model to establish predictors of HIV-protection behaviour among HIV-positive men who have sex with men (MSM) during sex with casual partners. Data have been collected from anonymous, self-administered questionnaires and analysed by using descriptive and backward elimination regression analyses. In a sample of 165 HIV-positive MSM, 82 participants between the ages of 23 and 78 (M=46.4, SD=9.0) had sex with casual partners during the three-month period under investigation. About 62% (n=51) have always used a condom when having sex with casual partners. From the original IMB model, only subjective norm predicted condom use. More important predictors that increased condom use were low consumption of psychotropics, high satisfaction with sexuality, numerous changes in sexual behaviour after diagnosis, low social support from friends, alcohol use before sex and habitualised condom use with casual partner(s). The explanatory power of the calculated regression model was 49% (p<0.001). The study reveals the importance of personal and social resources and of routines for condom use, and provides information for the research-based conceptualisation of prevention offers addressing especially people living with HIV ("positive prevention").

Adult non-smokers' exposure to second-hand smoke

This quantitative study was commissioned by the DHSSPS as part of their smoke-free monitoring and evaluation strategy after the introduction of smoke-free legislation in Northern Ireland in April 2007.The research was undertaken to determine the impact of smoke-free legislation on non-smoking adults who live with a smoker.Using research carried out both before and after the introduction of smoke-free legislation, this study details for the first time the attitudes and knowledge of non-smoking adults living with smokers in Northern Ireland, in relation to second-hand smoke.The study also reports non-smokers' exposure to second-hand smoke in a range of environments.

Cope with Confidence - survey of heart failure patient experience

Your views matter - if you have heart failure, or are close to someone who does, please complete our survey by 31st�March 2012 (link below).Heart failure is a common condition affecting at least 20,000 people in Northern Ireland. The aim of this survey is to find out how to increase the confidence of people living with heart failure so they have a better quality of life, and can work in partnership with health care professionals and support services in managing their condition. The findings of this survey will be used to help improve services.Your views are important and we would encourage you to complete the survey. It should only take around 20 minutes. Participation is confidential which means that your identity will not be revealed. You are asked for your age, the first part of you post code and which GP practice you are registered with. This is so the results for different age groups and for different large geographical areas (i.e. Health & Social Care Trust areas) can be compared.� Results will not be examined by individual GP practice.Participation is voluntary i.e. taking part in the study is your decision. Whether you participate or not will have no effect on the medical care you receive from your GP practice or elsewhere. None of the health care professionals involved in your care will know if you participate or not: neither will they see your individual response.Whether you are an adult or a young person living with heart failure, or a partner, care giver, son, daughter, relative or friend, we would like you to share your experiences. This will help us to develop existing services in Northern Ireland to better meet your needs.You can share your experience by completing the survey online, clicking this�link:�http://sg.sensemaker-suite.com/CopewithconfidenceThe survey should be completed by 31st�March 2012.�If you have any queries about the survey, or you would like to request a paper copy to complete, please contact the Public Health Agency (028) 9032 1313 and ask for extension 2487 or email us at copewithconfidence@hscni.netPlease note that the survey team can only assist in survey related questions and will not able to answer questions about heart failure, its treatment or services provided.The Northern Ireland Chest Heart & Stroke Association and The British Heart Foundation can provide information about support available to people with heart failure. Their contact details are:.�Northern Ireland Chest Heart and Stroke Association:� www.nichsa.com, telephone (028) 9032 0184.�British Heart Foundation:� www.bhf.org.uk, telephone 0300 330 3311

Unstable equilibrium: young adult women in family and career formation in Southern Europe

The paper examines the relationship between family formation (i.e., living with a partner and having children) and women’s occupational career in southern Europe (i.e., Greece, Italy, Portugal and Spain). The relationship is explored by analysing the impact that different family structures and male [nvolvement in caring activities have on women’s early occupational trajectories (i.e., remaining in the same occupational status, experiencing downward or upward mobility, or withdrawing from paid work). This research shows that male involvement in caring activities does not really push women ahead in their career, but the absolute lack of male support seems to negatively affect women’s permanence in paid work. These results apply to all southern European countries except Portugal, where the absolute absence of the partners’ support in caring activities does not seem to alter women’s determination to remain in paid work. The methodology applied consists of the estimation of multinomial logit regression models and the analysis is based on eight waves (1994-2001) of the European Community Household Panel (ECHP).

Baseline data of a population-based cohort of patients with diabetes in Switzerland (CoDiab-VD)

QUESTIONS UNDER STUDY: To describe a population-based sample of patients with diabetes and the quality of their care in the canton of Vaud, Switzerland, as a baseline measure for the evaluation of the "Programme cantonal Diabète". METHODS: We conducted a self-administered paper-based questionnaire survey. Non-institutionalised adult (aged ≥18 years) patients with diabetes diagnosed for at least 1 year and residing in the canton of Vaud were recruited by community pharmacies. Women with gestational diabetes, people with obvious cognitive impairment or people not sufficiently fluent in French were excluded. Primary outcomes were recommended processes-of-care and outcomes of care (glycosylated haemoglobin [HbA1c], generic and disease-specific health-related quality of life (HRQoL), overall care score in relation to the Chronic Care Model). Other measures included diabetes education, self-management support and self-efficacy, health status, health behaviour and demographics. RESULTS: A total of 519 patients with diabetes were included. Whereas the mean HbA1c level was 7.3% (n = 177, 95% confidence interval 7.1-7.5), diabetes-specific processes-of-care and influenza vaccination were reported by less than two-thirds of the patients. Physical activity and diet recommendations results mirrored patients' difficulties with their management in daily life and diabetes-specific HRQoL was worst in the dimensions relative to diet (eating and drinking) and sex life. A minority of patients reported ever having participated in diabetes education courses (32.8%). Overall, patients were satisfied with their care and the support they received. CONCLUSIONS: This study provides a broad picture of the experiences of people living with diabetes in the canton of Vaud. It shall guide the development of targeted interventions within the "Programme cantonal Diabète".

Development and validation of a symptom-based activity index for adults with eosinophilic esophagitis.

BACKGROUND & AIMS: Standardized instruments are needed to assess the activity of eosinophilic esophagitis (EoE) and to provide end points for clinical trials and observational studies. We aimed to develop and validate a patient-reported outcome (PRO) instrument and score, based on items that could account for variations in patient assessments of disease severity. We also evaluated relationships between patient assessment of disease severity and EoE-associated endoscopic, histologic, and laboratory findings. METHODS: We collected information from 186 patients with EoE in Switzerland and the United States (69.4% male; median age, 43 y) via surveys (n = 135), focus groups (n = 27), and semistructured interviews (n = 24). Items were generated for the instruments to assess biologic activity based on physician input. Linear regression was used to quantify the extent to which variations in patient-reported disease characteristics could account for variations in patient assessment of EoE severity. The PRO instrument was used prospectively in 153 adult patients with EoE (72.5% male; median age, 38 y), and validated in an independent group of 120 patients with EoE (60.8% male; median age, 40.5 y). RESULTS: Seven PRO factors that are used to assess characteristics of dysphagia, behavioral adaptations to living with dysphagia, and pain while swallowing accounted for 67% of the variation in patient assessment of disease severity. Based on statistical consideration and patient input, a 7-day recall period was selected. Highly active EoE, based on endoscopic and histologic findings, was associated with an increase in patient-assessed disease severity. In the validation study, the mean difference between patient assessment of EoE severity (range, 0-10) and PRO score (range, 0-8.52) was 0.15. CONCLUSIONS: We developed and validated an EoE scoring system based on 7 PRO items that assess symptoms over a 7-day recall period. Clinicaltrials.gov number: NCT00939263.

Coping with an HIV infection. A multicenter qualitative survey on HIV positive adolescents' perceptions of their disease, therapeutic adherence and treatment.

HIV-positive adolescents face a number of challenges in dealing with their disease and its treatment. In this qualitative study, twenty-nine HIV-positive adolescents aged 13 to 20 years (22 girls), who live in Switzerland, were asked, in a semi-structured interview (duration of 40-110 minutes), to describe their perceptions and experiences with the disease itself and with therapeutic adherence. While younger adolescents most often thought of their disease as fate, older adolescents usually knew that they had received it through vertical transmission, although the topic appeared to be particularly difficult to discuss for those living with their HIV-positive mothers. Based on their attending physician's assessment, 18 subjects were judged highly adherent, 4 fairly and 7 poorly adherent. High adherence appeared linked with adequate psychological adjustment and effective coping mechanisms, as well as with the discussion and adoption of explicit medication-taking strategies. The setting and organisation of health care teams should allow for ongoing discussions with HIV-positive adolescents that focus on their perceptions of their disease, how they cope with it and with the treatment, and how they could improve their adherence.

Removing Oneself from the Shadows: A Heuristic Inquiry to Understand the Lived Experience of Epilepsy in Young Adult Women and their Epilepsy Disclosure

Epilepsy is a chronic neurological disorder characterized by recurrent seizures (Stein & Kanner, 2009). The purpose of this study was to understand the essence of being a young woman living with epilepsy using heuristic inquiry (Moustakas, 1990). The research was built upon the assumption that each experience is unique, yet commonalities exist. Five women aged 22 to 28 years living with epilepsy were interviewed. Additionally, the researcher described her life with epilepsy. Participants characterized life with epilepsy as a transformative journey. The act of meeting and interacting with another woman living with epilepsy provided an opportunity to remove themselves from the shadows and discuss epilepsy. Three major themes of seizures, medical treatment, and social relationships were developed revealing a complex view of an illness requiring engaged advocacy in the medical system. Respondents frequently make difficult adjustments to accommodate epilepsy. This study provides a complex in-depth view of life with epilepsy.

Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions. Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa. Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care. Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world. Copyright © 2004 John Wiley & Sons, Ltd.

Life with a hemodialysis machine

The aim of the present study was to describe the experience of patients undergoing haemodialysis starting from their own perception. A qualitative perspective using Merleau Ponty's Existential Phenomenology was considered to be the most appropriate methodology for this study. Fifteen patients were interviewed in a haemodialysis unit at a Brazilian teaching hospital. Interviews were based on the question 'What does the experience of living with a haemodialysis machine mean?' Convergences in speeches were grouped into three categories: the machine, improvement in quality of life, reflection on patients' experience. These findings show the existential reality patients experience. A haemodialysis machine dictates their lives: they have to accept strict rules controlled by a team of healthcare providers. They realize it has to be so and there is no way out. It is the only way to get some relief from the symptoms of the disease. The feeling is mostly acceptance of the condition. Healthcare providers' dedication is recognized. Some participants complain bout painful procedures, others deny them, others fantasize the reality. An essential piece of information is the lack of future perspectives; few patients mentioned the possibility of a transplant or the possibility of carrying out their own care. The study may contribute in outlining new perspectives for nurses to understand the needs of patients undergoing haemodialysis. An approach accepting patients' views will probably bring awareness to patients as to the possibilities of helping with their own treatment.