Experiences of caregiving, satisfaction of life and social repercussions among family caregivers, two years post-stroke.

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 ▲]

The place oof health and the micro-prowers of health professionals in rtenetion centers for unauthorised migrants multi-situated ethnographic research (France-Spain).

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 ▲]

Increased residual disability among post-stroke survivors, and differences in the repercussions between informal caregivers.

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 ▲]

The configurations of a therapeutic failure with children of marginalised Roma families: for transcultural approach.

in Psychology and 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 ▲]

Differences between Luxembourg and Portugal in the Life Satisfaction of Stroke Survivors, two years post-event: The influence of an unequal quality of life.

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 ▲]

Health, care and risks management in the institutions for the confinement of unauthorised foreigners in France and Spain

in Canadian Society for the Sociology of Health (2010)

Two years post-stroke, Luxembourgish informal caregivers’ life satisfaction and their couple and family repercussions

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 ▲]

What Social Inequalities of Quality of Life (NEWSQOL domains) amongst patients does appear, two years after a stroke?

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 ▲]