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See detailExperiences of caregiving, satisfaction of life and social repercussions among family caregivers, two years post-stroke.
Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Social Work in Health Care (2012), 51

Cerebrovascular diseases are a public health and social policy priority in Europe due to their high prevalence and the long-term disability they may result in (as the principal cause of handicap ... [more ▼]

Cerebrovascular diseases are a public health and social policy priority in Europe due to their high prevalence and the long-term disability they may result in (as the principal cause of handicap). Increasingly, family caregivers take over the care at home of these patients. Two years post-stroke, our study analyzed the feelings of family caregivers from Luxembourg and northeastern Portugal toward their experience of caregiving and its repercussions on social and couple relationships, life satisfaction, and socioeconomic characteristics. Participating hospitals identified survivors and consent was sought by letter. Patients (n = 62) and their main caregivers (n = 46 pairs) were interviewed at home. The mean life satisfaction of caregivers was similar, but the experience of providing care differed in terms of family support, and disruptions of the caregivers’ family responsibilities. More Portuguese respondents gave activities up, found little time for relaxation, and estimated that their health had deteriorated; more Luxembourgers felt strong enough to cope. More Portuguese spouses reported an impact on their sex lives. Family caregivers represent a “population at risk.” Social workers can help them by providing domestic assistance, undertaking coaching activities, fostering favorable attitudes, and offering reassurance. Home-based rehabilitation in Europe involving family care must take account of cultural lifestyle issues. [less ▲]

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See detailLife satisfaction of two-year post-stroke survivors: effects of socioeconomic factors, motor impairment, Newcastle Stroke-specific Quality of Life leasure and World health Organization quality of Life-bref of informal caregivers in Luxembourg and a rural area in Portugal.
Baumann, Michèle UL; Lurbe-Puerto, Katia UL; Leandro, M. E. et al

in Cerebrovascular Diseases (2012), 33

Background: Life satisfaction of stroke survivors is known to be associated with socio-economic factors and the survivor’s and his/her caregiver’s quality of life, but their respective influence remains ... [more ▼]

Background: Life satisfaction of stroke survivors is known to be associated with socio-economic factors and the survivor’s and his/her caregiver’s quality of life, but their respective influence remains to be fully elucidated. Purpose: To analyse the stroke survivors’ life satisfaction 2 years after the event and its relationships with quality of life, socio-economic and stroke-related characteristics, and with informal caregivers’ life satisfaction and quality of life . Methods: Over 18 months, all stroke patients from Luxembourg and northeastern Portugal who lived at home were identified from the Inspection Générale de la Sécurité Sociale and hospital records, respectively. The clinical diagnosis of cerebrovascular disease was confirmed. We excluded all patients who declared that stroke did not result in neurological impairmentsat the time of stroke from the statistical analysis. The samples comprised 79 patients in Luxembourg and 48 in Portugal. Patients and the people they identified as their main caregivers were interviewed using validated questionnaires measuring life satisfaction, i.e. the Newcastle Stroke-Specific Quality of Life (Newsqol – 11 subscales), which identifies the areas affected by stroke among patients, and the World Health Organization Quality of Life – bref (Whoqol-bref – 4 subscales) of informal caregivers. Survivors without neurological impairment at the time of stroke were excluded. Data were analysed via multiple-regression models. Results: Life satisfaction was higher among women and lower among subjects with impaired motor functions. It was lower among Portuguese respondents with low-level education ( <12th grade) and higher among those at work (37.6/100). In Luxembourg, retired people had more life satisfaction than did working people (–7.9/100). Controlling for socio-economic factors, life satisfaction was associated with feelings- Newsqol (slope 0.25) among Luxembourg residents, and with feelings-, mobility- and self-care-Newsqol (slopes 0.24, 0.27 and 0.33, respectively) among Portuguese respondents. Life satisfaction of patients was strongly related to that offamily caregivers among the Portuguese respondents (slope 0.66) but the relationship was moderate in Luxembourg (slope 0.28). The survivors’ life satisfaction was not correlated with any Whoqol-bref domain in the Luxembourg group, but was correlated with the Whoqol-bref psychological, social relationships and environment domains among the Portuguese respondents (slopes 0.55, 0.59 and 0.51, respectively). Conclusions: The life satisfaction scale and the Newsqol stroke instrument, which identify areas of quality of life affected by stroke, are reliable patient-centred markers of intervention outcome. They can be used within the framework of medical follow-up (such as telephone assistance, clinical practice and prevention). Depending on the stroke survivor’s and the family caregiver’s habitual lifestyle and material circumstances, enhancement of a caregiver’s quality of life can help maintain the patient’s life satisfaction, particularly in a rural setting. [less ▲]

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See detailDifferences between Luxembourg and Portugal in the Life Satisfaction of Stroke Survivors, two years post-event: The influence of an unequal quality of life.
Baumann, Michèle UL; Lurbe-Puerto, Katia UL; Leandro, ME.

in Health inequalities across Europe (2011)

Two years post-event, we described the survivors’ life satisfaction (LS) and Quality of Life (QoL), the LS and QoL of their caregivers, and their socio-demographic and health characteristics. We analysed ... [more ▼]

Two years post-event, we described the survivors’ life satisfaction (LS) and Quality of Life (QoL), the LS and QoL of their caregivers, and their socio-demographic and health characteristics. We analysed the survivors’ LS and its associations with the above-mentioned determinants from a national (mainly urban society) survey in Luxembourg (LU) and a Bragança district (mainly rural) survey in the Northeast of Portugal (PT). Methods. Over 18 months, survivors (≥18 years) of a stroke, living at home and having given their informed consent were contacted. The Inspection Générale de la Sécurité Sociale of LU and the District Health Centre in PT had previously confirmed all diagnoses and listed the potential participants. Survivors identified their caregivers and both were interviewed, at home, using questionnaires measuring LS (scale 1-10) and two internationally validated QoL’ scales: the survivors’ Newcastle Quality of Life (Newsqol) and the Whoqol-Bref for the caregivers. Results. The participation rate was 26.5% LU and 38% PT: 94 LU (65.5 years) and 50 PT (70.1 years) survivors; 62 LU (59.3 years) and 46 PT (60.7 years) caregivers. The LU survivors and their caregivers had higher QoL scores than the PT samples. In contrast, the PT survivors were more affected by stroke-related impacts, with significant differences in Newsqol ‘mobility’ (i.e. walking, managing stairs, bending down, standing), ‘self-care’ (i.e. preparing food, shopping, using transport, getting washed, getting dressed, and showed), feelings regarding the current situation (i.e. less independence, feelings about oneself, life changes acceptance, depressive mood, feelings of useless, loss of control over their life), and their emotional status (i.e. more emotional, sometimes crying, short-tempered, less tolerant and nervous). Only the PT survivors’ LS was linked to the ‘current neurological impairment’ domains. The LU survivors’ LS was associated with all Newsqol dimensions; stronger links (p<0.001) were found in ‘feelings’ and ‘sleep’, but no relation existed with the caregivers’ Whoqol-bref domains. Difference estimates were obtained between the survivors’ LS and the Newsqol ‘self-care’ dimension (regression coefficient (rc) -0.28 for PT), their caregivers’ LS (rc -0.63 for PT) and Whoqol-bref psychological (rc -0.67 for PT), environmental (rc -0.73 for PT), and social relationship (rc -0.91 for PT) domains. Discussion. Two years post-event, the survivors' multi-dimensional QoL was a more relevant predictor of their LS, than that of their caregivers. LU-PT differences recalled the hypothesis of the cumulative effect throughout life of social inequalities in health and highlighted the distinct impact in survivors’ LS of living in an urban society, turned towards community supports or in a rural society based on a domestic care. In home-based care settings, the survivors’ LS and Newsqol are useful patient-centred markers for individual and community interventions. [less ▲]

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See detailOn the collaborative work between psychiatry and social work in developing transcultural capability in mental health care.
Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Effets psychosociaux de la mondialisation sur la santé mentale. (2011)

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See detailThe place oof health and the micro-prowers of health professionals in rtenetion centers for unauthorised migrants multi-situated ethnographic research (France-Spain).
Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Social Relations in Turbulent Times (2011)

This research aimed to identify the place of health in Immigrants Retention Centres (IRC) and analyse the role of the health professionals regarding border control and immigration policies. The current ... [more ▼]

This research aimed to identify the place of health in Immigrants Retention Centres (IRC) and analyse the role of the health professionals regarding border control and immigration policies. The current structures to confine unauthorised migrants seem to address a two-fold issue: the repressive approach to controlling immigration and the increasing set-up of facilities participating in a mode of government centred on national security concern. Method. Ethnographical study was conducted in the Medical Units of a French (capacity: 35 pers.) and a Spanish (150 pers.) ICR for respectively, 9-months with a regularity of 30 half-days of presence every fortnight and 21 continuous days over a 3-weeks period. Qualitative data from observational notes and conversional interviews were triangulated and analysed under the Critical Categorical Content Discourse method, with Atlas.ti support. Findings. Illnesses that could halt deportation were infectious diseases involving treatment requiring a specialized infrastructure (tuberculosis); in France, those whose representation is bound to feelings of fear and disgust (mange) and mental illness that poses a threat to the individual and other persons; in Spain, pregnancy is a reason to allow a release from IRC. Squats are raid when expulsion quotas need to be filled; it accounted for the increased number of substance dependent persons in ICR at that time. Health professionals in IRC confront moral dilemmas. In France, they have a recognised micro-power able to overturn a deportation order: the medical certificate. Discussion. In ensuring healthcare access, they are drawn into the vigilance and control logics of the IRC security regime, despite themselves. Standardization of the medical practices is their main fall back and provides for risks management, which relies on the architecture and the neatness of the space, individual strategies of exception and social relationship that are shaped by a moral economy. The retreat into medical grounds allows keeping things “professional”and helps balance the tension resulting from providing medical care in a space that automatically appears to translate any act into one carried out in compliance with the repressive policy against undesired migration. Institutionalisation of European IRC medical units network is recommended to confront inequalities in care (access and quality). [less ▲]

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See detailThe configurations of a therapeutic failure with children of marginalised Roma families: for transcultural approach.
Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Psychology & Health (2011), 26(suppl 2), 165

Background: Alin (born in 1993, Timisoara, Rumania) is the elder son of a Roma family settled for ten years in France, having heavy psychomotor and cognitive deficiencies. Method: Case study of Alin’s ... [more ▼]

Background: Alin (born in 1993, Timisoara, Rumania) is the elder son of a Roma family settled for ten years in France, having heavy psychomotor and cognitive deficiencies. Method: Case study of Alin’s psychotherapeutic trajectory. Findings. Socio-cultural representations of mental handicaps, intrafamilial relationships and personal history are interactive determinants of psychological accompaniment and healthcare provision. Mental healthcare team in charge of Alin misconceived in the relations of care: the central role played by the particular status family network attributes to the person with mental handicap and the articulation between diversity, difference and inequality in the family’s experience of mental handicap and its care. Discussion: In socio-culturally diverse contexts, the quality of relations of care depends on professionals’ capability to develop socio-culturally sensitive and responsive to beneficiaries’ needs psychotherapeutics. Transcultural approach is not effective unless it is integrated to conventional psychological practice, and a collaborative work is settled with the concerned professionals of social work and associative sectors. [less ▲]

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See detailAccompagner, à leur domicile, des personnes victimes d’un accident vasculaire cérébral : des perceptions différentes entre femmes et hommes
Bucki, Barbara UL; Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Genre et parcours de vie Enfance, adolescence, vieillesse. (2011)

Au Grand-duché de Luxembourg, les aidants informels qui accompagnent au quotidien des personnes victimes d’un accident vasculaire cérébral (AVC) sont de plus en plus nombreux (OMS, 2004 ). L’évènement ... [more ▼]

Au Grand-duché de Luxembourg, les aidants informels qui accompagnent au quotidien des personnes victimes d’un accident vasculaire cérébral (AVC) sont de plus en plus nombreux (OMS, 2004 ). L’évènement majeur que représente l’AVC amène-t-il les femmes et les hommes à percevoir différemment la vie ? Notre étude tente de comparer et d’analyser, deux ans après la survenue d’un AVC, les répercussions psychosociales chez les aidants et les aidantes. A leur domicile, 41 femmes âgées de 59,1 ans (σ = 13,9) et 21 hommes âgés de 59,6 ans (σ = 13,9) ont accepté de répondre volontairement en face à face à un(e) enquêteur/trice. Le questionnaire comportait 1) la mesure de l’autonomie des victimes de l’AVC évaluée par les aidants à l’aide de l’index de Barthel (échelle 0 à 100) ; 2) la satisfaction à l’égard de la vie (échelle 0 à 10) ; 3) les assertions traduites et adaptées du Caregiver Reaction Assessment (CRA) (Given et al., 1992 ) ; 4) des questions sur l’évolution, depuis l’AVC, de la répartition des tâches, des rôles et des responsabilités au sein du foyer. <br />D’après les aidants/tes, le degré d’autonomie des personnes victimes d’AVC (âge moyen 64,8 ans ; σ = 14,1) dont ils/elles s’occupent, ne présente aucune différence significative (moyenne générale 82,2 ; σ = 28,7). Ce sont les hommes qui déclarent avoir la meilleure satisfaction à l’égard de la vie (t = - 2,52** ). D’après les scores obtenus aux dimensions du CRA, ce sont les femmes qui paraissent le plus affectées par le retentissement sur leur santé (t = 2,06**), les retombées sur l’organisation des activités quotidiennes (t = 2,54**) et le manque de soutien familial (t = 2,18**). Aucune différence entre femmes et hommes n’est mise en évidence dans le partage de la plupart des tâches quotidiennes. Il en est de même pour les scores du CRA de l’impact financier et de l’estime de soi, qui sont d’ailleurs perçues de manière positive. Cependant, les femmes reconnaissent se sentir « toujours fatiguées » (56% vs 16,7% **) et centrer leurs activités autour des soins (76,5% vs 38,9% **). Elles ne parviennent pas à trouver du temps pour pouvoir se détendre (45,5% vs 6,7% ***) et ont l’impression que les autres se sont déchargés sur elles (52,6% vs 16,7% **). Elles assurent plus qu’avant les rapports avec les professionnels (52% vs 6,3% ***) et des responsabilités au sein du foyer (37,5% vs 5,9% ***). L’AVC a modifié les parcours de vie en mobilisant des compétences culturelles et des ressources psychologiques liées au genre. Des interventions contribuant à renforcer les « health capabilities » des hommes et des femmes devraient permettre aux aidants de bénéficier d’un appui dans le maintien à domicile des personnes victimes d’un AVC. Des approches qualitatives permettront de mieux comprendre leurs besoins spécifiques. [less ▲]

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See detailTwo years post-stroke, predictors of survivors’ life satisfaction: common associations between Luxembourg and Portugal.
Baumann, Michèle UL; Lurbe-Puerto, Kàtia UL; Bucki, Barbara UL et al

in Psychology & Health (2011), 26(suppl 2), 90

Two years post-stroke, we analysed the survivors’ LS by looking at its associations with their QoL and their informal caregivers’ QoL and drawing from a national survey in Luxembourg (LU) and a Braganc¸a ... [more ▼]

Two years post-stroke, we analysed the survivors’ LS by looking at its associations with their QoL and their informal caregivers’ QoL and drawing from a national survey in Luxembourg (LU) and a Braganc¸a district survey in Portugal (PT). Method: Face-to-face structured interviews at home. Findings: For LU, the 94 stroke survivors’ LS was linked with all survivors’ Newsqol (Newscstle Stroke-Specific Quality of Life)* dimensions, with strong links for feelings and sleep. No association was observed with their 62 caregivers’ Whoqol-bref domains. For PT, the 50 survivors’ LS was correlated with all Newsqol’ dimensions (except vision) with strong relations for mobility, self-care, feelings and sleep, and with all 46 caregivers’ Whoqol-bref domains (physical, psychological, environmental and social relationships). Discussion: Common associations exist with stronger links for PT. Survivors’ QoL is a predictor of LS which is a useful patient-centred marker for the practice of the psychologists who develop family interventions and counselling programmes. [less ▲]

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See detailIncreased residual disability among post-stroke survivors, and differences in the repercussions between informal caregivers.
Baumann, Michèle UL; Lurbe-Puerto, Katia UL

in Topics in Stroke Rehabilitation (2011), 18(2), 162-171

Purpose: To analyze the associations between increased residual disability among poststroke survivors and the repercussions for their informal caregivers’ lives, taking into account the latter’s gender ... [more ▼]

Purpose: To analyze the associations between increased residual disability among poststroke survivors and the repercussions for their informal caregivers’ lives, taking into account the latter’s gender and education level. Methods: 215 stroke survivors (64.5 years; 55.8% men) were recruited by one neurologist from each of the 22 French regions. Katz Index of Independence in Activities of Daily Living (Katz ADL) was mean 9.3, and 54% still had impairments in “more than two of the six neurological domains” of the American Heart Association Stroke Outcome Classifi cation (AHA.SOC): motor,sensory, vision, affect, cognition, and language. The 215 caregivers (57.8 years; 72.1% women) completed a face-to-face questionnaire concerning their social (8 items), material (4 items), and emotional (8 items) repercussions. Results: Katz ADL and AHA.SOC were significantly related to social repercussions for caregivers. Lack of autonomy among stroke survivors (low Katz ADL) was associated with the material diffi culties of most concern to caregivers: “I needed to move house” (odds ratio [OR] 1.16; 95% CI, 1.07-1.27) and “I cannot go out anymore” (OR 1.29; 95% CI, 1.16-1.44). Being a male caregiver was strongly associated with a feeling of injustice (OR 2.53; 95% CI, 1.07-6.00). A low educational level was linked to an increased feeling of fear (OR 2.61; 95% CI, 1.05-6.51) and a greater feeling of isolation (OR 6.49; 95% CI, 1.20-35.02). Conclusion: Increased dependency post stroke leads to impoverishment in the caregiver’s social relationships. Evaluating the emotional repercussions, particularly for men, is an important aspect of enabling survivors to continue to live at home.Innovative accompaniment and counseling services should be considered.repercussions for their informal caregivers’ lives, taking account of the latter’s gender and education level. [less ▲]

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See detailDay-to-day home caring for a stroke survivor, two-year post-stroke perceived psychosocial impacts for woman caregivers in Luxembourg
Bucki, Barbara UL; Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in Women’s Mental Health (2011)

In the Grand-Duchy of Luxembourg (GDL) informal caregivers are increasingly requested to provide daily home care to stroke survivors to avoid institutionalization (Kjellstrom et al. 20071). As this major ... [more ▼]

In the Grand-Duchy of Luxembourg (GDL) informal caregivers are increasingly requested to provide daily home care to stroke survivors to avoid institutionalization (Kjellstrom et al. 20071). As this major life event brings upheavals to caregiver-survivor pairs, we aimed to identify and analyse the perceived psychosocial impacts for female caregivers. Method. Over 12 months, with the help of the Social Security, two-years post-stroke survivors were contacted, and 41 women (59,1 years) and 21 men (59,6 years) informal caregivers consented to participate in this cross national survey. Research assistants interviewed them at home, using face-to-face questionnaires, containing: 1) Life Satisfaction (LS) measure in accordance to the European Quality of Life Study (EQLS)2 (scale 0 - 10) ; 2) Caregiver Reaction Assessment 24 assertions (CRA) (Given et al., 19923); 3) 7 questions about the evolution of caregivers’ tasks and responsibilities in the household since the stroke onset. Means and percentages and, a comparison between sexes were estimated using t tests and chi². Results. The LS mean is lower in woman caregivers (6.84 vs. 8.00 male caregivers t = - 2.52). Women appear to be more affected in terms of physical health (33.0 ±22.1 vs. 19.1±20.1 t = 2.06), disrupted schedule (46.7 ±29.7 vs. 26.2 ±18.8 t = 2.54) and lack of family support (39.9 ±24.7 vs. 25.0 ±15.6 t = 2.18). More women responded to feel « tired all the time » (50.0% vs. 12.5% p=0.013) and found « difficult to find time for relaxation » (35.7% vs. 6.3% p=0.030). They admitted “others have dumped caring for their partner onto them” (35.7% vs. 11.8% p=0.078) and had difficulty “to get help from their family” (17.9% vs. 0.0% p = 0.073). Women considered to be more “in charge of the relationships with professionals” (52.0% vs. 6.3% p=0.003) and to “have more household responsibilities” than before the event (37.5% vs 5.9% p=0.020). Less women declared to « enjoy caring for their partner » (67.9% vs. 93.8% p= 0.049). Conclusions. Informal woman caregivers’ LS average (6.84) were one point lower than the indicator in 2007 for the GDL general population (7.85) who participated at the EQLS, near to the EU-27’ one (7.0). Our study showed their psychosocial repercussions them to require gender-based adaptation strategies to perform their caregiving role. Interventions reinforcing women’s health capability could improve their LS. Follow-up qualitative research would help to identify and understand women’s specific needs regarding these capabilities to develop. [less ▲]

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See detailWhy does multi-situated ethnography develop new competences for sociological research on the poorest and most excluded populations' health as well as for evidence-based health promotion interventions?
Lurbe-Puerto, Katia UL; Baumann, Michèle UL

in European Society for Health and Medical Sociology (2010)

When extremely poor and excluded populations are concerned, Multi-Situated Ethnography (MSE) represents a valuable research design for health needs and resources diagnosis* and for the improvement of ... [more ▼]

When extremely poor and excluded populations are concerned, Multi-Situated Ethnography (MSE) represents a valuable research design for health needs and resources diagnosis* and for the improvement of health promotion programmes. By focusing on the results of our 2-years community-based participatory study on prevention amongst Roma populations living in France**, we will assess the potentials of ethnography-based research for both scientific production and health promotion interventions. Methods/actions. A MSE has been carried in three distinct scenarios, selected because of the different socio-cultural integration levels and life conditions of the Roma families. There are: 1) the Forest of Mery-sur-Oise, a shanty town where around twenty Roma families live, 2) the collective emergency housing in the old headquarters in Saint-Maur-des-Fossé, and 3) S.A.N. de Sénart, a conglomeration of towns which an integration plan of Roma people was launched in. This fieldwork has produced scientific data on the healthcare provision and the social accompaniment realised by professionals of the health, social and administrative sectors as well as on Roma’s health promotion practices. A reflexive evaluation design was undertaken through the conduction of an expert panel involving 3 sociologists and 3 social workers, meeting each month. Results. The MSE allowed building up comparative relations between health practices and socio-economic and geo-political factors amongst “hermetical populations” when they asked to share information on their life with outsiders. Simultaneously, the data analysis allowed considering: universal similarities, cultural differences and individual singularities. The increased of the methodological procedures as it helped avoid falling into stigma reification of groups already highly racially discriminated. Its participatory dimension helped document and share learning across contexts, providing a renewed source of dynamism amongst professionals dealing with sensitive fields and very difficult to access. Because of the sensitivity brought by its in-depth comprehensive-based approach, it moved closer professionals to their Roma beneficiaries, even leading to cases of conflict resolution between both actors. Conclusion. The acquisition of the required skills to carry out a social and health intervention based on a community-based participatory diagnostic of needs and resources and, on an evaluative follow-up of the actions undertaken within the intervention scenario is a major asset for the elaboration and management of individual or community-dimensioned professional projects. MSE needs to be revisited and revalued as it comprises useful a set of competences to give informed guidance by supplying decision-makers and professionals, with sound and comprehensive analysis. [less ▲]

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See detailWhat Social Inequalities of Quality of Life (NEWSQOL domains) amongst patients does appear, two years after a stroke?
Baumann, Michèle UL; Lurbe-Puerto, Katia UL; Le Bihan, Etienne UL

in European Society for Health and Medical Sociology (2010)

The quality of live “capability” must be taken into consideration because it affects stroke patients’ ability to make health choices. We aimed to analyse the relations between their socio-demographic ... [more ▼]

The quality of live “capability” must be taken into consideration because it affects stroke patients’ ability to make health choices. We aimed to analyse the relations between their socio-demographic characteristics and their quality of life (domains selected: interpersonal relationship, emotions, feelings, pain, sleep, fatigue). Methods: Two years after their stroke, 72 volunteers participated to a Luxembourg national survey. Completed at their home, the questionnaire included the six NEWSQOL* domains that responded to the criterion of an absence of direct consequence of the injuries caused by the stroke. For each domain, a multiple regression model was fit and adjusted by impairments (motor, vision, sensory, language, and memory). We performed a backward selection discarding, in succession, variables associated with highest p-values, until we obtained a set of explanatory variables significantly linked at the 10% level. Results: To be a woman is positively linked to a better quality of life (interpersonal relationships, feelings, sleep). The older patients and the ones living in couple have a less good quality of life with regards to fatigue. The current professional situation does not have any impact on quality of life; which is not the case for the occupation at the time of the stroke. Compared to the executives’ ones, the patients who never had a job, employees, and manual workers have a worse quality of life in terms of feelings. The manual workers, employees and the ones who never had a job show a minor good quality of life in relation to fatigue. When the patients’ educational level is lower than the first cycle of secondary education, their quality of life deteriorates in terms of interpersonal relationship, emotion, feelings, pain. After the stroke, changes in the financial position resulted in a less good quality of life in relation to interpersonal relationship, feelings, pain, sleep, whilst the ones in the occupational situation only worsened patients’ feelings and fatigue. “Feelings” (depression, control, independent) is the most associated NEWSQOL-domain with the socio-economic factors. Conclusion: Patients’ level of education and the changes in their financial position are determinants of social inequalities of quality of life amongst stroke survivors. A better elementary health education on stroke would make upcoming patients to gain in quality of life capacity. They will better adhere to the advice given within the therapeutics framework and psychological counseling as well as to the social accompaniment provided and the administrative requirements they have to accomplish to obtain financial aids. [less ▲]

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See detailHarmony within stroke patient-caregiver pairs concerning psychological and social repercussions, two years post-stroke in Luxembourg and Portugal.
Baumann, Michèle UL; Lurbe-Puerto, Katia UL; Le Bihan, Etienne UL

in International Sociology Association. (2010)

This study aims to improve our understanding of the impact of stroke on the lives of patients & principal caregivers (PCs). The objective was to analyze agreement within patient-caregiver couples in ... [more ▼]

This study aims to improve our understanding of the impact of stroke on the lives of patients & principal caregivers (PCs). The objective was to analyze agreement within patient-caregiver couples in responses to statements concerning the psychological & social repercussions of stroke. Two years post-stroke, 97 patient-PC pairs were administered questionnaires at home. Logistic regression was used to analyze data on 50 couples of questionnaires from Luxembourg (Lux) & 47 from Portugal (Por); 60% of patients were men, with average ages of 65 years in Luxembourg & 71 years in Portugal; 75% of carers were women aged on average 61.5 years (Lux) & 61 years (Por). Responses to the question "Are you happy or not?" were more correlated with concordance within patient-caregiver couples’ statements concerning the psychological and social repercussions of stroke than were socioeconomic characteristics (nationality, age, having finished elementary school or not). Patients who considered themselves happy were more likely to give answers close to those of their caregivers. This was true particularly in the domain of stroke repercussions on relationships with friends: “sympathy shown by friends and relations”, “loss of friends”, “friends bothered by the handicap” & "ties maintained & even strengthened”. Conversely, PCs who described themselves as happy were less likely to agree with the patient they cared for. Patient-PC couples emphasised the consequences of a stroke on self-image in the face of the “loss of many friends" & the fact that "the patient feels devalued ". Family & social life is disrupted by stroke, and friendly relationships are put under stress. Patient-caregiver coherence is central, not least in its effect on quality of life. Do couples’ feelings about life have a decisive role in the reconstruction of the identities of patients and caregivers? What part will trust play in that process? [less ▲]

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See detailTwo years post-stroke, Luxembourgish informal caregivers’ life satisfaction and their couple and family repercussions
Lurbe-Puerto, Katia UL; Baumann, Michèle UL; Le Bihan, Etienne UL

in Sociology of Health (2010)

This study aims to improve our understanding of the changes in the couple and family lives of stroke survivors’ caregivers and to analyse the relationships between the Caregivers’ Life Satisfaction (CLS ... [more ▼]

This study aims to improve our understanding of the changes in the couple and family lives of stroke survivors’ caregivers and to analyse the relationships between the Caregivers’ Life Satisfaction (CLS) and the social and emotional repercussions of the caregiving role, two years after this event. Life satisfaction, optimism about the future, happiness and other subjective well-being aspects have attracted the European policymakers, leading to the Eurofund to introduce a “life satisfaction” dimension in the European Quality of Life Surveys (EQLS). The general subjective appraisal of one’s life is now an indicator next to objective measures of economic performance, such as GDP. How is life satisfaction for the main informal caregivers of stroke-survivors, at the Grand-duchy of Luxembourg (one of the smallest UE country, 502 500 hab. (01/2010), 2600 km2). Individual and family upheavals stroke-related have a major effect on the survivor’s life, and on the close relatives and friends’ ones. «The self-assertion on the harmony of the stroke survivor-caregiver pairs» is the strategy to approach the issue. The implications of these changes are determined by the partners’ trajectory. The CLS is disrupted by stroke, but a lack of information remains on caregivers’ needs, mostly on the repercussions on the couple and family relationships and projects. Over twelve months, 62 pairs (among them 51 couples) of stroke survivors (64.4 mean age; majors impairments: sensory 53.2% and memory 38.7%) and their main informal caregivers (62 mean age, 61.7% women) consented to participate at a National Survey. Research assistants interviewed them at home, with a face-to-face questionnaire. Caregivers evaluated, on a four-point scale, a list of repercussions; these assertions were built up from a qualitative exploratory study. The LS ten-point scaled was dichotomised in “low (<=7 of 10)” and “high (>7 of 10) life satisfaction” (LLS vs HLS)”. Our research protocol was approved by the National Committee of Research Ethics and the Committee for Data Protection. Stroke survivors’ LS were lightly inferior than the CLS (mean=8) and no significant differences were observed between their socio-demographic characteristics. Comparing the responses obtained on the couple repercussions, the caregivers with LLS had emphasised the impacts of the care provided to their recipients: « The stroke was experienced as a drama that our couple has never overcome” (54.2 LLS vs 17,2% HLS; p≤0.001);“I cannot leave anymore the stroke survivor alone for a long time” (60.7% LLS vs 17.4% HLS; p=0.001); « The stroke has ended with all the life projects that as a couple we made» (45.8 LLS vs 11.1% HLS ; p≤ 0.05); “The stroke has brought serious turnovers in my couple” (57.1 LLS vs 25.9% HLS ; p≤ 0.05). Regarding family repercussions, the caregivers with LLS had underlined the impacts of their caregiving role: "The stroke is often a cause of the distance problems we have with our children" (23.1% LLS vs 0.0% HLS; p≤0.01), and “The stroke has brought serious turnovers in my family” (82.8% LLS vs 51.7% HLS; p≤0.05). CLS and survivors LS were close. Inequalities regarding CLS were identified. Evaluating repercussions on CLS is needed in enabling stroke survivors to live at home. Long-term informal care sustainability has been overlooked; innovative accompaniment and counselling are developed to follow Helsingborg Declaration on European Stroke Strategies. [less ▲]

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