Cet ouvrage synthétise les principaux thèmes de la psychologie gérontologique dans leur dimension sociale, institutionnelle et individuelle. L'auteur dresse un état des lieux de la gérontologie en France et analyse la représentation de la vieillesse dans l'art. Il se fonde sur de très nombreux exemples cliniques pour traiter de la question de la dépression ou de l'accompagnement en fin de vie.
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
BACKGROUND: A child's death affects not only family members but also healthcare professionals involved in patient care. However, the education system for bereavement care in Japan is not systematically established, and care provided is based on healthcare professionals' experiences. We aimed to investigate pediatricians' recognition of and actual circumstances involved in bereavement care in Japan.
METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected with semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis.
RESULTS: Pediatricians' recognition of bereavement care was categorized as follows: (1) developing relationships with families before a child's death is important in bereavement care; (2) after the child dies, family involvement is left to the doctor's discretion; (3) coping with a child's death myself through past experience is essential; (4) doctors involved in a child's death also experience mental burden; and (5) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (1) attention must be given to the emotions of the families who lost a child; (2) doctors' involvement with bereaved families depends on doctors' recognition and expertise.
CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systemized manner. This is necessitates improvement of the self-care of healthcare professionals for grief by improving bereavement care-related education. Additionally, healthcare professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care for families who lose a child.
IMPORTANCE: The Engagement of Patients with Advanced Cancer (EPAC), comprised of a lay health worker (LHW) who assists patients with advance care planning, is an effective intervention for improving patient experiences and reducing acute care use and total health-care costs. The objective of this study was to assess patients' and caregivers' experiences with the intervention.
METHODS: We invited all patients enrolled in EPAC and their caregivers to complete an 8-item survey at the end of the intervention and a random 35% sample to participate in a qualitative interview to assess their experiences. At 15-month follow-up, we invited all caregivers of patients who died during the study to participate in a qualitative interview. We analyzed survey responses using bivariate methods and recorded, transcribed, and analyzed interviews using qualitative content analysis.
RESULTS: Sixty-nine patients were alive at completion of the intervention and all 30 identified caregivers completed the survey. All viewed the intervention as a critical part of cancer care and recommended the intervention for other patients. In qualitative interviews, among 30 patients, all reported improved comfort in discussing their end-of-life care preferences. In qualitative interviews with 24 bereaved caregivers, all viewed the intervention as critical in ensuring that their loved ones' wishes were adhered to at the end of life.
CONCLUSIONS AND RELEVANCE: Incorporating an LHW into end-of-life cancer care is an approach supported and viewed as highly effective in improving care by patients and caregivers. The LHW-led EPAC intervention is one solution that can significantly impact patient and caregiver experiences.
This qualitative case study describes the end-of-life care for a physically healthy, although psychologically dying man. The letters of Countess Moltke to her husband who was sentenced to death and executed during the Nazi regime were analyzed content analytically. Three content clusters emerged, namely, Caring, Comforting, and Providing meaning, all of which were stimulated by Attachment to the dying person and by Expression of empathy, respectively. It is demonstrated that during the final 6 weeks, her care was well adapted to the course of his dying. The findings are summarized by the allegory of the dancing couple.
Nous voudrions, dans cet article, partager notre réflexion relative aux mutations que connaissent de nos jours les équipes mobiles intrahospitalières de soins palliatifs en Wallonie (Belgique) et proposer quelques repères d’avenir face aux défis auxquels ces dernières se trouvent confrontées. Après avoir fait un état des lieux, nous proposons un changement de vision. La nomination palliative est une reconnaissance du passage, de la transition du curatif au palliatif. Cette notion de « passage », de « transition » est fondamentale. L’équipe mobile intrahospitalière a un rôle éducatif à jouer dans la réimplantation de la mort, dans les possibilités qu’on a de l’évoquer. Il s’agit de revenir à une dynamique apaisante de la nomination de la mort possible. C’est tout naturellement qu’il est nécessaire d’évoluer vers une représentation circulaire des soins au cœur desquels se trouvent et les soins curatifs et les soins palliatifs, avec une vision plus précoce des soins palliatifs. Nous terminons en pointant les objectifs et missions de l’équipe mobile intrahospitalière, à continuer ou à développer, en précisant ses mandats et en incitant l’institution hospitalière à lui accorder une reconnaissance.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
Latinos are less likely to have an advance care plan, use hospice or palliative care services, and have conversations about end of life than the general population. This article describes processes and outcomes of a Latino lay health advisor advance care planning training program in eastern North Carolina. An exploratory case study was used to understand the perspectives of Latino leaders. Two Latino leaders completed an advance care planning training in 2016. Data were generated from field notes, interviews, and observations. A description of the social and contextual conditions in the study setting facilitated data analysis. The primary finding, “planting the seeds,” was the strategy that began the conversation of advance care planning. “Planting the seeds” meant introducing the topic carefully to ensure the person is ready to listen, the information will be accepted, and capacity will be gained to make informed decisions. Training Latino lay health advisors in advance care planning has the potential to eliminate health disparities.
Oncology nursing is a rewarding, challenging, and ever-changing specialty. Oncology affords the nurse an opportunity to care for individuals with unique, complex issues during his or her cancer journey. I assumed that, at some point, I would care for a patient who may not have a positive outcome. It became clear to me that I would be there during the dying process and, subsequently, face issues related to the death of a patient. I really thought I knew what I was getting into; however, I now understand that I was not sufficiently prepared.
BACKGROUND: Research on nurses' perceptions of dignity is limited, with much work instead focusing on patients' experiences. Maintaining the dignity of patients is considered to be an important element of nursing care; however, it is often diminished by the acts and omissions of healthcare providers.
OBJECTIVES: The purposes of this study were to understand oncology nurses' perceptions of care that supports patients' dignity during end-of-life hospitalization and to propose a theoretical foundation consistent with these perceptions as a guide to practice.
METHODS: A qualitative study using grounded theory was employed. Semistructured interviews with 11 experienced female oncology nurses generated insights into their perceptions of dignity in caring for terminally ill patients. Data were analyzed using the constant comparative method until data saturation was reached.
FINDINGS: This study revealed an emerging model for dignity care that uses communication, support, and facilitation in the education of nurses during end-of-life care. The proposed model could enhance the facilitation of nursing education and aid in the design of nursing course curricula and practical experiences that may improve nurses' ability to provide care supporting dignity.
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).
Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.
BACKGROUND: Family caregivers are crucial in end-of-life care. However, family caregiving may involve a significant burden with various negative health consequences. Although nurses are in a unique position to support family caregivers at home, little is known about which nursing interventions are effective in this context. Therefore, this study aims to provide insight into nursing interventions currently available to support family caregivers in end-of-life care at home and to describe their effects.
METHODS: A systematic search was conducted in Embase, Medline Ovid, Web of Science, Cochrane Central, CINAHL and Google Scholar. This review included quantitative studies published from January 2003 until December 2018 reporting on nursing interventions to support adult family caregivers in end-of-life care at home. Data were extracted on intervention modalities, intervention components, and family caregivers' outcomes. Methodological quality of the studies was assessed with the Cochrane Risk of Bias Tool.
RESULTS: Out of 1531 titles, nine publications were included that reported on eight studies/eight interventions. Of the eight studies, three were randomised controlled trials, one a pilot randomised trial, one a non-randomised trial, and three were single-group prospective studies. Four intervention components were identified: psychoeducation, needs assessment, practical support with caregiving, and peer support. Psychoeducation was the most commonly occurring component. Nursing interventions had a positive effect on the preparedness, competence, rewards, and burden of family caregivers. Multicomponent interventions were the most effective with, potentially, the components 'needs assessment' and 'psychoeducation' being the most effective.
CONCLUSIONS: Although only eight studies are available on nursing interventions to support family caregivers in end-of-life care at home, they show that interventions can have a positive effect on family caregivers' outcomes. Multicomponent interventions proved to be the most successful, implying that nurses should combine different components when supporting family caregivers.
BACKGROUND: Worldwide, operating rooms have seen the re-emergence of donation after cardiac death organ donors to increase the number of available organs. There is limited information on the issues perioperative nurses encounter when caring for donor patients after cardiac death who proceed to organ procurement surgery.
OBJECTIVES: The purpose of this paper is to report a subset of findings derived from a larger study highlighting the difficulties experienced by perioperative nurses when encountering donation after cardiac death organ donors and their family within the operating room during organ procurement surgery from an Australian perspective.
METHODS: A qualitative grounded theory method was used to explore perioperative nurses’ (n = 35) experiences of participating in multi-organ procurement surgery.
RESULTS: This paper reports a subset of findings of the perioperative nurses' experiences directly related to donation after cardiac death procedures drawn from a larger grounded theory study. Participants revealed four aspects conceptualised as: 'witnessing the death of the donation after cardiac death donor'; 'exposure to family'; 'witnessing family grief' and 'stepping into the family's role by default'.
CONCLUSION: Perioperative nurses' experiences with donation after cardiac death procedures are complex, challenging and demanding. Targeted support, education and training will enhance the perioperative nurses' capabilities and experiences of caring for the donation after cardiac death donor and their family with the operating room context.
Researchers have been interested in the subject of accompanying individuals who experienced a child’s terminal illness and death, sharing their grief online. Using The Reiss Motivation Profile and qualitative methods, the authors identified the life motives of emotional rubberneckers–grief blog and memorial page readers. Key reasons for the regular behavior of this kind are found: interest in the protagonist’s health, compassion, will to help, and sense of bonding. Such activity provides support to the respondents. Readers’ important life motives include the substantial need to care for their loved ones, to be needed, emotional stability, and a low need for power.
La présente étude expose le contexte d’origine de la loi relative à l’euthanasie et les circonstances dans lesquelles elle a été pensée et adoptée. Elle rend compte des principaux débats qui ont émaillé l’élaboration du texte de loi et des grands choix opérés. Ensuite, elle fait état des difficultés et controverses apparues sur le terrain de l’interprétation et du contrôle des conditions de la loi. Enfin, elle donne un aperçu des débats en cours et propositions de loi visant à étendre le champ d’application de la loi.
L’approche des soins palliatifs centrée sur la personne malade oblige à établir des partenariats entre cette dernière, les soignants, la famille, les professionnels sociaux et les bénévoles d’accompagnement. La communication qui se décline dans le dialogue, l’écoute, l’instauration d’une relation de confiance, l’observation des comportements et du langage corporel est essentielle face à l’incertitude et à un questionnement existentiel du malade et de ses proches. À domicile, comme en témoigne cette infirmière expérimentée, ces questionnements convoquent les soignants dans leur professionnalisme et leur humanité.
Il est temps de proposer une nouvelle approche personnalisée de l’accompagnement de nos résidents vers leur fin de vie plus à l’écoute de leur vécu, de leur contexte spécifique, de leurs convictions, de leurs attentes, de leurs valeurs personnelles, des situations qu’ils sont prêts à vivre ou à ne pas supporter. Il est temps de les écouter se raconter, de les voir autonomes dans leurs choix de vie comme de fin de vie, de les aider à préparer leurs proches sur leur disparition et sur leur "après".
BACKGROUND: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.
OBJECTIVE: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.
DESIGN: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.
MEASUREMENTS: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.
RESULTS: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.
CONCLUSIONS: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
BACKGROUND: Women with metastatic breast cancer (MBC) experience unique symptom management and psychosocial needs due to aggressive, yet palliative treatment with a progressive, chronic illness.
OBJECTIVE: This article describes the effect of a quality improvement project for coordination of supportive care in MBC. Program evaluations included referral rates for supportive services, patient-reported outcomes of symptom distress, generalized anxiety, and overall well-being.
DESIGN: An interdisciplinary Support, Education and Advocacy Program (MBC-SEA) was developed. The 1-hour, weekly, patient review included collaborative assessments to determine needs for social service, psychological counseling, and palliative care. A prospective pre- and postexperimental cohort design with convenience sampling was used. Analysis was conducted with paired t test analysis of pre- and postimplementation outcomes.
SETTING/PARTICIPANTS: Program outcomes of 118 women with MBC visiting an urban outpatient breast cancer clinic during September 2016 to November 2016 (pre) and January 2017 to March 2017 (post) were evaluated.
MEASUREMENTS: Referral rates to social work and palliative care, symptom, anxiety, and overall well-being scores.
RESULTS: Following program implementation, referrals to palliative care and social work supportive services increased significantly including patient-reported outcomes symptom distress scores mean difference 1.4 (95% confidence interval [CI]: 0.4306-2.6428), P = .004; generalized anxiety scores mean difference 1.5 (95% CI: 0.5406-2.5781), P = .003; and overall well-being mean difference of -0.7 (95% CI: -1.3498 to -0.0570), P = .03.
CONCLUSIONS: Purposeful nurse-led assessment for social service and palliative care needs increases referrals with improvement in patient-reported outcomes.