Rouge, jeune femme mystérieuse et désenchantée, cherche à aider sa grand-mère Rose, qui vient de perdre son mari. Afin de rompre le mutisme de la vieille dame, elle recourt à son tandem, un élément indissociable de leur vie et de leurs souvenirs.
Le couple peut vaciller quand il fait l'expérience du deuil périnatal. Les femmes expérimentent le poids du tabou social et les hommes sont souvent oubliés sous prétexte qu'ils ne sont pas concernés dans leur chair. Lorsqu'elle a vécu l'expérience de la grossesse endeuillée, l'héroïne n'a pas trouvé les mots pour faire comprendre sa douleur à son compagnon et lui se sentait impuissant face à la détresse de sa compagne. La logique cartésienne de l'un face à la douleur viscérale de l'autre. Ce livre retrace le parcours d'un couple attachant, auquel on peut tous s'identifier.
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OBJECTIVE: The purpose of the current study was to use a mixed-methods approach to assess the perspective of cancer survivors on the bidirectional impact between cancer and their social contexts.
METHOD: A fixed concurrent triangulation mixed-methods survey design was used with open- and closed-ended questions that were predetermined and administered to participants. Quantitative items included demographic questions and the Life Impact Checklist. Qualitative questions were designed to explore the bidirectional impact between the patient and specific contexts including spirituality/faith, the spousal/partner relationship, and the family. A cross-sectional descriptive approach was used to evaluate the quantitative items and the constant comparative method guided the analysis of open-ended questions.Result Among 116 participants (mean age 58.4 years), the majority were female (66.7%) with breast cancer (27.9%). Nearly one-half the respondents endorsed a positive impact of cancer on their spirituality/faith, but qualitative results suggested less of a bidirectional impact. The importance of the spouse/partner during the cancer experience was emphasized, including the subthemes of instrumental and emotional support; however, there was often a negative impact of cancer on the spouse/partner relationship, including sexual functioning. Survivors indicated family members provided instrumental and emotional support, but not as regularly or directly as a spouse/partner.Significance of results Social contexts are important among cancer survivors, with many cancer survivors relying more on their spouse/partner than other family members for support. The cancer experience is stressful not only for survivors, but also for individuals in their social contexts and relationships.
Griffin a choisi de quitter Théo, son premier amour parti à l'autre bout du pays pour ses études. Les deux garçons s'aiment toujours et sont restés en contact. Griffin était convaincu qu'ils formeraient à nouveau un couple un jour, même quand Théo se met à fréquenter Jackson. Malheureusement, tout vole en éclats à la mort de Théo, laissant derrière lui un garçon qui a bien du mal à vivre dans un monde où il n'est plus.
Non pas un livre sur le deuil, mais un livre sur le refus du deuil. Sous la forme du roman épistolaire - longue lettre qui défie la mort, ambitionne de prolonger la présence, cette Oraison fun est un grand livre baroque, à la fois portrait de la défunte et récit de ses luttes ; portrait d'un couple contraint par la maladie de vivre hors des normes l'intensité d'une union bousculant routines et conventions ; portrait de l'époque à travers celui de la faune cosmopolite des touristes arpentant les allées du Père Lachaise où repose Muriel, l'absente à jamais présente "au centre pile de solitude".
Dans une langue revendiquant sa hardiesse, l'écriture littéraire empoigne ici le deuil, l'humour, l'amour, la mort et ses lois. Refusant la fin sans issue, cette célébration rythme le pouls d'une vie d'outre-tombe.
OBJECTIVE: Specialized palliative care (SPC) interventions increasingly include patient-caregiver dyads, but their effects on dyadic coping are unknown. We investigated whether an SPC and dyadic psychological intervention increased aspects of dyadic coping in patients with advanced cancer and their caregivers, whether dyad characteristics moderated effects and whether aspects of dyadic coping mediated significant intervention effects on caregivers' anxiety and depression.
METHODS: We randomized 258 patients with incurable cancer and their caregivers to care as usual or accelerated transition from oncological treatment to home-based SPC and dyadic psychological support. In secondary outcome analyses, using mixed-effects models, we estimated intervention effects and 95% confidence intervals (CIs) for communication of stress and common coping, and moderation by dyad type and demographics. In path analyses, we investigated whether stress communication and common coping mediated intervention effects on caregivers' symptoms of anxiety and depression. (Clinicaltrials.gov NCT01885637)
RESULTS: The intervention significantly increased common coping in patients and caregivers in couples (estimated difference, 0.68; 95% CI, 0.11 to 1.24) and stress communication by partner caregivers (0.97; 0.24 to 1.24). We found some support for different intervention effects for spouses and other dyads, but no evidence of mediation.
CONCLUSIONS: SPC and dyadic psychological intervention may affect aspects of dyadic coping. Common coping and stress communication did not mediate the previously found significant intervention effects on caregiver anxiety and depression, indicating that other mechanisms may have been.
Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the formation and dissolution of marriage and cohabitation relationships in adulthood, in relation to factors that may help identify potentially vulnerable subgroups of bereaved children, that is, sex of the deceased parent, cause of death and child's age at the time of death. Using data from national registries, we followed all children born in Denmark between 1970 and 1995 (n = 1,525,173) and used Poisson regression models to assess rate ratios by gender for relationship formation and separation according to early parental loss. We stratified the analyses by sex of the deceased parent, cause of death and child's age at the time of death, and adjusted for the confounding effects of parental income, education level, and psychiatric illness. We found that parental loss was associated with a higher rate of relationship formation for young women, but not young men, and higher rates of separation for both men and women. The associations with separation were stronger for persons who lost a parent to suicide than to other causes. The effects were relatively small, a possible testimony to the resilience of developmental processes in most children. However, as long-term relationships are associated with physical and psychological health, interventions for bereaved children and families are important, especially in the subgroup bereaved by suicide.
Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.
Cancer and nutrition-related problems are extremely distressing events and disturb functioning and daily life. It is recognized that the effects of stressors challenging well-being are mediated by the meaning attached to these stressors. As nutrition-related problems are often being experienced within couples, it is also important to gain understanding of a partner’s interpretation of complaints and whether it coincides with that of the patient.
To explore the meaning attached to nutrition-related problems, a qualitative approach was followed. Seven couples, each composed of a patient with cancer and his/her cohabiting life partner, participated. Data were collected through in-depth interviews and analyzed by an interpretative phenomenological approach.
Nutrition-related problems among patients with advanced cancer are mostly perceived as destroying health and leading to loss of physical, psychological, and social health symbols. Because the meaning patients and their partners attach to nutrition-related problems is individual and dynamic, it is necessary to devote special attention to the issues on different occasions.
The study findings can assist nurses and other professional caregivers in providing psychological support for couples confronted with nutrition-related problems in advanced cancer. It is important to take into account the meaning patients and partners attach to these nutrition-related problems.
OBJECTIVES: To determine whether end-of-life (EOL) experiences in the first spouse in a marriage are associated with EOL experiences in the other spouse.
DESIGN: Nationally representative, longitudinal survey.
SETTING: Health and Retirement Study, Waves 1992-2012 linked to Medicare claims
PARTICIPANTS: Community-dwelling older adults who died (N=4,558), representing 2,279 married heterosexual couples.
MEASUREMENTS: We examined 3 EOL experiences: enrollment in hospice for >3 days before death, lack of advance care planning (ACP) before death, and intensive care unit (ICU) use during the last 30 days of life. We used multiple logistic regression to determine whether the EOL experience of the first spouse was a significant predictor of the EOL experience of the second spouse after adjusting for demographic characteristics, socioeconomic status, health status, and time between the first and second spouses' deaths.
RESULTS: First spouses who died were on average 80 years old, and 62% were male; second spouses were on average 85 years old, and 62% were female. After adjustment, second spouses were more likely to use hospice if the first spouse used hospice (odds ratio (OR)=1.68, 95% confidence interval (CI)=1.29–2.20). Second spouses were less likely to have ACP when the first spouse did not have ACP (OR=2.91, 95% CI=2.02–4.21). Hospice and ACP associations were stronger when deaths were closer in time to one another (p-value for interaction < .05). Second spouses were more likely to use ICU services if the first spouse did (OR=1.80, 95% CI=1.27–2.55).
CONCLUSIONS: The EOL experiences of older spouses are strongly associated, which may be relevant when framing ACP discussions.
Cas 8 : Mme A.B., âgée de 74 ans est victime d’une hémiplégie droite par embolie cérébrale. Elle est aphasique type Broca (comprend les paroles, mais ne peut parler). Après une hospitalisation en Unité d’urgences cérébro-vasculaires, puis en rééducation, il est constaté que Mme A.B. ne pourra jamais remarcher ni retrouver la parole. Son mari, âgé de 85 ans, bien que valide et lucide, est incapable de reprendre au domicile son épouse confinée au fauteuil, incapable d’assurer seule ses transferts, incontinente urinaire et fécale et dans l’impossibilité de s’exprimer de façon compréhensible. Les services de Soins et d’aide à domicile du secteur jugent ne pas avoir les moyens de prendre soin de cette malade et l’Hospitalisation à domicile (HAD) refuse une patiente qui exige une présence d’aide humaine quasi permanente.
En conséquence, une demande d’entrée en Établissement d’hébergement pour personnes âgées dépendantes (EHPAD) et en Soins de longue durée (SLD) est faite, ainsi qu’une demande de mise sous tutelle. Pendant ces séjours hospitaliers, son mari est venu la voir tous les jours et a commencé à développer avec elle un début de communication non verbale. L’établissement acceptant cette « résidente » est situé à 30 km du domicile du couple, qui habite une grande ville. Les trois enfants sont dispersés à des distances bien supérieures, travaillent, ont des enfants et ne peuvent s’occuper ni de leur mère handicapée, ni du couple.
Imagine this, a young woman, living in a small fishing town in Devon, travels to Northampton to visit friends and almost immediately falls in love with her own Prince Charming. Within three months the young woman has left her job, her village, her family and friends, to move in with her Prince and his family. Seems hard to imagine this can happen in real life and not just fairy tales but I know it can because this is my story. And, like most fairy tales, it is a mix of happiness and tragedy.
Background: The use of long-term care (LTC) is common in very old age and in the last years of life. It is not known how the use pattern is changing as death is being postponed to increasingly old age. The aim is to analyze the association between the use of LTC and approaching death among old people and the change in this association from 2000 to 2011.
Methods: The data were derived from national registers. The study population consists of 315 458 case-control pairs. Cases (decedents) were those who died between 2000 and 2011 at the age of 70 years or over in Finland. The matched controls (survivors) lived at least 2 years longer. Use of LTC was studied for the last 730 days for decedents and for the same calendar days for survivors. Conditional logistic regression analyses were performed to test the association of LTC use with decedent status and year.
Results: The difference in LTC use between decedents and survivors was smallest among the oldest (OR 9.91 among youngest, 4.96 among oldest). The difference widened from 2000 to 2011 (OR of interaction of LTC use and year increased): use increased or held steady among decedents, but decreased among survivors.
Conclusions: The use of LTC became increasingly concentrated in the last years of life during the study period. The use of LTC is also common among the oldest survivors. As more people live to very old age, the demand for LTC will increase.
INTRODUCTION: In Denmark, first trimester screening has a very high uptake (>90%). If Down syndrome is diagnosed, termination rates are high (>95%). The aim of this study was to investigate the timing of the decision of termination of pregnancy following a Down syndrome diagnosis and the factors influencing this decision
MATERIAL AND METHODS: Semi-structured, qualitative interview study with 21 couples who had received a prenatal diagnosis of Down syndrome and decided to terminate the pregnancy. Participants were recruited from obstetric departments between February 2016 and July 2017. Data were analysed using thematic analysis
RESULTS: Five themes were identified: 'initial decision-making', 'consolidating the decision' 'reasons and concerns shaping the termination of pregnancy decision', 'the right decision is also burdensome' and, 'perceived influences in decision-making'. For most couples, an initial termination of pregnancy decision was made before or during the diagnostic process, but it was re-addressed and consolidated following the actual diagnosis. Imagining a family future with a severely affected Down syndrome child was the main factor influencing the termination of pregnancy decision. The decision was articulated as 'right' but also as existentially burdensome for some due to fear of regret and concern about ending a potential life. The termination of pregnancy decision was considered a private matter between the couple, but was refined through interactions with clinicians and social network
CONCLUSION: All couples made an initial decision prior to receiving the Down syndrome diagnosis. Knowledge of the couple's initial decision may facilitate patient-centred communication during and after the diagnostic process. Couples may benefit from counselling to deal with grief and existential concerns.
OBJECTIVES: In the Late Intermediate Period Andes (AD 1100-1450), the proliferation of above-ground sepulchers reconfigured social boundaries within and between communities engaged in protracted conflict. However, the biosocial dimensions of these mortuary practices, and their implications for conflict and alliance formation, remain unexplored. This study examines patterns of phenotypic variation to: (1) evaluate if open sepulchers were organized on the basis of biological relatedness, and (2) explore if sex-specific phenotypic variability conforms to models of postmarital residence.
MATERIALS AND METHODS: Cranial nonmetric traits were recorded in five skeletal samples from two cemeteries in the Colca Valley, Peru. Biological distances between burial groups were calculated using the Mean Measure of Divergence (MMD) statistic. Postmarital residence was explored by calculating and bootstrapping the ratio of male-to-female mean pairwise differences (MPD) at the within-group level.
RESULTS: The MMD analysis yields greater than expected between-group distances for burial groups with a minimum sample size of 20 individuals. In contrast, a prevailing pattern of sex-specific, within-group phenotypic variability is not apparent from the analysis of MPD. The use of 12 or 24 dichotomous traits produces similar results.
DISCUSSION: Greater than expected biological distances suggest that above-ground mortuary practices reinforced biosocial boundaries between corporate household groups. Intracemetery heterogeneity persisted even as cranial vault modification, a correlate of social identity, became more homogenous, revealing how corporate group organization was negotiated at multiple scales. Sex-specific variation does not conform to traditional migration models. If migration occurred, it did not have a homogenizing effect on phenotypic variation. These results should be viewed with caution in light of the smaller sample sizes of sex-specific groupings.