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.
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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.