Inspirée de sa propre histoire, l'auteure, étudiante infirmière à l'IFSI des Diaconesses de Reuilly, raconte l'histoire de Gaëlle qui va accompagner jusqu'à la fin son père, atteint de cancer, qu'elle retrouve à peine. Elle relate les sentiments qui traversent Gaëlle dans cette épreuve.
Background: Physicians experience high rates of burnout, which may negatively impact patient care. Palliative care is an emotionally demanding specialty with high burnout rates reported in previous studies from other countries. We aimed to estimate the prevalence of burnout and degree of resilience among Canadian palliative care physicians and examine their associations with demographic and workplace factors in a national survey.
Methods: Physician members of the Canadian Society of Palliative Care Physicians and Société Québécoise des Médecins de Soins Palliatifs were invited to participate in an electronic survey about their demographic and practice arrangements and complete the Maslach Burnout Inventory for Medical Professionals (MBI-HSS (MP)), and Connor-Davidson Resilience Scale (CD-RISC). The association of categorical demographic and practice variables was examined in relation to burnout status, as defined by MBI-HSS (MP) score. In addition to bivariable analyses, a multivariable logistic regression analysis, reporting odds ratios (OR), was conducted. Mean CD-RISC score differences were examined in multivariable linear regression analysis.
Results: One hundred sixty five members (29%) completed the survey. On the MBI-HSS (MP), 36.4% of respondents reported high emotional exhaustion (EE), 15.1% reported high depersonalization (DP), and 7.9% reported low personal accomplishment (PA). Overall, 38.2% of respondents reported a high degree of burnout, based on having high EE or high DP. Median CD-RISC resilience score was 74, which falls in the 25th percentile of normative population. Age over 60 (OR = 0.05; CI, 0.01–0.38), compared to age = 40, was independently associated with lower burnout. Mean CD-RISC resilience scores were lower in association with the presence of high burnout than when burnout was low (67.5 ± 11.8 vs 77.4 ± 11.2, respectively, p < 0.0001). Increased mean CD-RISC score differences (higher resilience) of 7.77 (95% CI, 1.97–13.57), 5.54 (CI, 0.81–10.28), and 8.26 (CI, 1.96–14.57) occurred in association with age > 60 as compared to =40, a predominantly palliative care focussed practice, and > 60 h worked per week as compared to =40 h worked, respectively.
Conclusions: One in three Canadian palliative care physicians demonstrate a high degree of burnout. Burnout prevention may benefit from increasing resilience skills on an individual level while also implementing systematic workplace interventions across organizational levels.
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions.
Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency.
Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals.
Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
Laurent Ciccone raconte l'histoire de Luc, une tranche de sa vie durant laquelle, héros malgré lui, il chute et se relève. Durant cette tranche de vie découpée dans le vif, Luc souffre du coeur et du genou, part en vacances en Italie avec des potes, rit beaucoup de tout ou de rien, et pleure, pleure un ami qui meurt. La mort profite des phrases comme un train, des rails, pour coudoyer la vie, la croiser sans crier gare à moins que ce ne soit l'inverse.
Vingt ans après la mort de son père alors qu'il n'était qu'un enfant, Théo replonge dans ses origines et dans son passé, imaginant la vie de personnes qui sont, de près ou de loin, connectées à son présent.
Context: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so.
Objectives: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience.
Methods: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered.
Results: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group.
Conclusion: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals.
This chapter characterizes meaning-making in the context of grief during bereavement, emphasizing its fundamentally social nature and offering several approaches to identifying the extent and nature of the meaning the bereaved has made of a loss. Theoretical developments and empirical research are presented to highlight the crucial role that meaning-making appears to play in recovery and posttraumatic growth following the death of a significant person. By contrast, disrupted meaning-making is described as a mediator of impairing bereavement outcomes, particularly prolonged grief disorder. Clinical procedures and techniques for facilitating meaning-making among the bereft are detailed, including a discussion of their therapeutic rationale and indications for their use in grief therapy. A case vignette illustrates the concepts and clinical processes reviewed in the chapter.
Conducting palliative care research can be personally and professionally challenging. While limitations in funding and training opportunities are well-described, a less recognized barrier to successful palliative care research is creating a sustainable and resilient team. In this special report, we describe the experience and lessons-learned in a single palliative care research lab. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address our sustainability, we translated resilience theory to practice. First, we identified and operationalized shared mission and values. Next, we conducted a resilience resource needs assessment for both individual team-members and the larger team as a whole, and created a workshop based curriculum to address unmet personal and professional support needs. Finally, we changed our leadership approach to foster psychological safety and shared mission. Since then, no team-member has left and the program has thrived. As the demand for rigorous palliative care research grows, we hope this report will provide perspective and ideas to other established and emerging palliative care research programs.
Background: Family caregivers of advanced cancer patients are at risk for developing mental disorders. Despite this risk, the majority seem to adapt well, and throughout the caregiving period, their trajectory is characterised by healthy functioning. However, GPs struggle with making timely assessments of caregivers at risk for mental dysfunction, since they often fail to seek medical help for themselves and the appropriate research about resilience in cancer caregivers is scarce. Moreover, research is hampered by the lack of a universal definition or theoretical framework.
Aim: To propose a comprehensive definition and framework for further research in family caregiving for advanced cancer patients.
Method: Inspired by the hermeneutic methodology, reviews and concept analyses on resilience following a potentially traumatic event were searched and analysed. Conforming to the hermeneutic methodology, article collection from PubMed, EMBASE, CINAHL, and PsycInfo was followed by analysis and was stopped when saturation was reached. Elements consistently arising from the definitions of resilience were listed and the theoretical frameworks were compared.
Results: The APA definition: ‘resilience is the process of adapting well in the face of adversity, trauma or threats’ and Bonanno’s framework ‘temporal elements of resilience’ are proposed.
Conclusion: There is a need for studies on resilience in caregivers of advanced cancer patients. Resilience is context-dependent, hence, study results cannot be transferred as such from one clinical situation to another. Furthermore, conceptual ambiguities hinder the interpretation and comparison of study results. For further research on resilience in caregivers of advanced cancer patients, we suggest the APA definition of resilience and Bonanno’s framework.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
Lorsque son papi disparaît, Hugo se sent terriblement triste et perdu. Jamais plus il ne reverra son grand-père adoré... Mais une nuit, dans un rêve, le petit garçon retrouve son cher papi qui a quelque chose d'important à lui révéler. Un grand secret à propos d'une merveilleuse méduse, d'un hibou très bien vêtu et de l'amour qui, lui, ne meurt jamais.
Dans le vert feuillage de Grand-Pommier, vivent deux jeunes hiboux. L'un s'appelle Tibou, l'autre Brindille. Grand-Pommier veille sur eux depuis que leurs parents ont été tués par l'épervier.
Grand-Pommier, témoin de leur histoire, prend soin des deux petits hiboux et les aide à grandir, répond à leurs questions. Les deux petits hiboux parlent de leurs parents qui leur manquent, des dangers qu'ils courent à cause de l'épervier, de l'envie de s'envoler loin du nid. Beaucoup de sujets sont abordés pour apporter de multiples réponses aux petits lecteurs de ce livre.
Mamie Babka et Petite Ourse, deux voyageuses ourses, cheminent ensemble. Un jour, Mamie Babka s'allonge et dit qu'elle est arrivée. Petite Ourse la veille un moment et reprend son chemin, pousée par le vent (ou le souvenir de Mamie Babka ?) qui lui dit de continuer. Petite Ourse entend des rires et rencontre Oumi, autre ourse avec laquelle elle poursuit le chemin.
BACKGROUND: Providing care for patients with advanced cancer is often the responsibility of the partner. Being confronted with an incurable cancer diagnosis can be highly disruptive for the patient's partner and can be considered a potentially traumatic event. However, most caregivers seem to adapt well during the process of providing care. This finding is in line with the concept of resilience in literature: a dynamic process of adapting well, resulting from the interplay between intrinsic and extrinsic resources and risks. Resilience is age-related, with the elderly population being higher in resilience as compared to the younger generation. However, resilience has been understudied in middle-aged caregivers.
AIM: To explore what intrinsic and extrinsic resources facilitate or hamper resilience in the middle-aged partner of a patient with incurable cancer.
METHODS: Nine middle-aged partners of patients who died at home of cancer were selected and interviewed in depth within the first year following the death of their partner. A thematic analysis utilizing an inductive approach was conducted.
FINDINGS: Resilience was challenged by the partner's diagnosis of incurable cancer. All participants made use of a set of interacting, caregiver-specific and context-related resources, facilitating a resilient process and leading to positive feelings and even personal growth. The partners demonstrated individual competences: adaptive flexibility, positivism, a sense of self-initiative and adaptive dependency. Furthermore, they relied on their context: cancer-related professionals and relatives. Context and situation interact continuously. The resulting dynamics were based on the context-availability, meaningful relationships and the patient's role.
CONCLUSION: A resilient trajectory results from an interplay between individual and contextual resources. To build resilience in middle-aged partners of patients with incurable cancer, health care professionals should address all available resources. Moreover, they should be aware of being part of the caregiver's context, a complex adaptive system that can be either resilience-supporting or -threatening.
Working with terminally ill patients is regarded as a stressful or traumatic event and may lead to negative outcomes, including job burnout and secondary traumatic stress (STS). Psychological resilience might protect employees from the negative consequences of stress. The aim of this study was to determine the mediating role of job burnout in the relationship between psychological resilience and STS. The study included 72 nurses aged from 22 to 72 years old (M = 46.01, SD = 10.69), working with terminally ill patients. The recipients completed 3 questionnaires: the Secondary Traumatic Stress Scale, the Oldenburg Burnout Inventory, and the Resilience Measurement. The results reveal negative associations between resilience, job burnout, and secondary traumatic stress, and a positive correlation between secondary traumatic stress and job burnout. Mediation analysis showed that job burnout plays a mediating role in the relationship between psychological resilience and secondary traumatic stress. Our findings highlight the role played by job burnout in the manifestation of STS. Professional and nonprofessional interventions for individuals experiencing work-related traumatic stress would benefit from interventions that build personal resources.
PURPOSE OF REVIEW: Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress.
RECENT FINDINGS: Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.
SUMMARY: Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
PURPOSE: Exposure to end-of-life and chronic illness on a daily basis may put palliative healthcare professionals' well-being at risk. Resilience may represent a protective factor against stressful and demanding challenges. Therefore, the aim is to systematically review the quantitative studies on resilience in healthcare professionals providing palliative care to adult patients.
METHODS: A literature search on PubMed, Scopus, Web of Science and PsycINFO databases was performed. The review process has followed the international PRISMA statement guidelines.
RESULTS: At the initial search, a total of 381 records were identified. Twelve articles were assessed for eligibility and, finally, 6 studies met all the inclusion criteria. Of these, four researches were observational and two interventional pilot studies. From the systematic synthesis, palliative care providers' resilience revealed to be related to other psychological constructs, including secondary traumatic stress, vicarious posttraumatic growth, death anxiety, burnout, compassion satisfaction, hope and perspective taking.
CONCLUSIONS: The current systematic review reported informative data leading to consider resilience as a process modulator and facilitator among palliative care professionals. A model on palliative healthcare providers' experience and the role of resilience was proposed. Further studies may lead to its validation and implementation in assessment and intervention contributing to foster palliative healthcare professionals' well-being.
BACKGROUND: Resilience is a multidimensional construct that explains why people facing the consequences of adversity and stress can have a positive outcome, emphasizing adjustment to experiences that are perceived as threatening.
OBJECTIVE: The aim of this study is to review the construct of resilience and associated variables in caregivers of patients with chronic, advanced illness and at the end of life.
METHODS: The review included studies published between January 2009 and January 2019, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide reporting. The Medline, ScienceDirect, HINARI, PsychINFO, and SciELO databases were used for bibliographic exploration to identify research studies that examined the impact of resilience on adaptation and overall well-being in caregivers of patients with chronic and advanced illness.
RESULTS: A total of 23 quantitative and qualitative studies were identified whose aim was to describe the role of resilience in adaptation and coping in caregivers. In these studies, resilience was associated with a positive impact on the quality of life and emotional distress. Communication and social support increase resilient coping strategies. In most selected articles, the sampling strategy used was convenience sampling. Data collection used evaluation scales related to resilience and associated variables for quantitative studies, and semistructured interviews were used for qualitative studies.
CONCLUSION: Promoting a resilient coping style in caregivers reduces the distress that normally results from illness-related changes in the biopsychosocial and spiritual dimensions. A resilient coping style can diminish the risk of stress and burden, and promote adaptation in the caregiver.