Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Sous forme d’un journal allant de 2005 à 2019, l’auteur retrace son histoire d’amour avec Christophe, son époux mort à la suite d’une prise mortelle de drogues de synthèse. Il raconte leur rencontre, leurs combats communs, les circonstances de sa disparition et son propre deuil, de même qu’il alerte les pouvoirs publics sur la circulation de ces substances.
Le couple est "une foule à deux" disait Freud. Il s’agit d’une relation entre deux êtres qui est marquée d’un fonctionnement particulier. Le couple a ses habitudes, ses modes de vie, ses règles de fonctionnement plus ou moins tacites. Face à la maladie, le couple est ébranlé. Chacun vit une réalité différente avec ses appréhensions et ses craintes qui lui sont singulières : "Je n’ai pas le droit de me plaindre, c’est lui qui est malade…". Une asymétrie se crée entre "celui qui est malade" et "celui qui est (censé) être bien portant". Pourtant, le partenaire de vie est touché, lui aussi, dans son corps et dans son être. Des troubles du sommeil, de l’appétit, une fatigue physique et psychique, sont souvent constatés. Un sentiment d’impuissance, de culpabilité, de non-légitimité "à dire" ce qu’il ressent à son proche malade est prégnant. Un climat de non-dits règne au sein du couple. Au travers de situations cliniques relatées, nous partirons de l’observation que le soutien apporté aux proches permet de maintenir les ressources personnelles de l’aidant et favorise "l’accordage" relationnel, la communication au sein du couple. Aider le couple dans les différentes crises induites par la maladie grave, peut lui permettre de développer une nouvelle dynamique. De manière préventive, cela permet de favoriser la transmission et l’accompagnement du deuil à venir pour le proche.
OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial.
METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, three months, and six months).
RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06--.10). Anxiety x Gender effects on baseline couple communication (p's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication x Gender x Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men.
CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
L'épreuve de la maladie grave transforme la dynamique du couple. Les professionnels témoignent des ressources et des difficultés des couples à maintenir un espace intime et sécurisant. Il est important pour les accompagnants de réfléchir à leurs représentations du couple et à leur positionnement, à veiller à ne pas violenter davantage ces unions déjà fortement éprouvées.
This work aims to integrate previous research perspectives on terminal well-being decline and partner bereavement by investigating the codevelopment of life satisfaction in the years preceding the death of one partner. We analyzed longitudinal data from the German Socio-Economic Panel Study (N = 1,450 couples) and applied dyadic multilevel models to estimate both partners' trajectories of life satisfaction and to reveal the pathways of well-being transmission in couple members approaching [partner] death. Findings were compared with a propensity-score-matched control sample of couples in which neither partner died during the study. We found that to-be-deceased and to-be-bereaved partners experienced increasing disparities in their trajectories of life satisfaction in the years before [partner] death: Although both partners exhibited significant and accelerated declines in life satisfaction, these declines were more pronounced in to-be-deceased individuals. In the control sample, we also identified significant and accelerated declines in life satisfaction but these declines were less intense and they did not differ between partners. Regarding between-partner correlations, we observed that couples approaching [partner] death experienced weaker interdependencies in their declines of life satisfaction. Finally, and concerning the pathways of well-being transmission, we found that life satisfaction was significantly transmitted between partners and the strength of this effect did not differ between the samples. These findings suggest that the years before [partner] death are characterized by distinctive patterns of change and interdependence in life satisfaction. Future studies may explore the sources of increasing between-partner disparities in life satisfaction in an end-of-life relationship context.
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
Contrary to expectations of joint decision-making, a substantial minority of older married couples report only one spouse possessing an advance directive. Using Health and Retirement Study data, the authors examined advance directive discordance among heterosexual married couples in which at least one spouse had completed an advance directive. It was predicted that spouses who differed in age, self-rated health, or race/ethnicity would be more apt to adopt individualistic as opposed to relational motivational stances, resulting in higher odds of nonmatching advance directive status. Heterogamy did not account for discordance, but couples in which one or both spouses attended some college were more likely to report advance directive concordance. In contrast, couples in which one or both spouses were non-White were more likely to display advance directive discordance. Study results raise concerns about the effectiveness and reach of advance care planning promotion efforts among low-education and non-White older married adults.
Although palliative care nurses are identified as key players in supporting couples during advanced illness, there is a lack of evidence about their knowledge and experiences with this particular role. The aim of the study was to explore palliative care nurses' attitudes, roles, and experiences in addressing relationship functioning of couples in daily practice. A qualitative study was conducted using in-depth interviews, observational research, and peer debriefing groups with palliative care nurses in Flanders, Belgium. Nurses support relationship functioning by creating a couple-positive care environment, by being present/acknowledging feelings, and by rectifying imbalances between couples. They do so in a proactive way, backed up by team support. Nurses hesitate toward explicitly unraveling and intervening in relationship problems, in favor of providing comfort or offering a strengths-based approach. The findings offer an urgent call to enhance the educational programs for palliative care nurses by integrating the theories and practice frameworks that guide relational assessment and intervention, which are being used in family nursing.
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.
[Début résumé éditeur]
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.