L'ouvrage évoque l'accompagnement des personnes atteintes de la maladie d'Alzheimer. A partir de son expérience d'infirmière, l'auteure partage les témoignages des familles venues dans le centre d'accueil de jour qu'elle a ouvert. Des points de vue de neurologues et de neuropsychologues sont également présentés.
BACKGROUND: Nurses and certified nursing assistants (CNA) have a crucial role in 24/7 continuity of palliative care for many vulnerable patients and families, however, their perspective has been largely omitted in reported barriers to palliative care.
AIM: To describe barriers to ideal palliative care that are specific to nurses and CNAs working in all care settings.
METHODS: A cross-sectional, online survey was distributed to members of the Dutch Nurses' Association.
FINDINGS: Almost 50% of the participating 2377 nurses and CNAs experienced more than five barriers to ideal palliative care in their work situation; nurses and CNAs employed in regional hospitals, mental healthcare and nursing home settings encountered more barriers than those working in other settings.
CONCLUSION: The three most common barriers were: lack of proactive care planning, lack of internal consultation possibilities and lack of assessment of care recipients' preferences and needs for a seamless transition to another setting.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Context: Nearing death, hospice patients are increasingly unable or unwilling to self-report their symptom intensity and rely on nurses' assessments.
Objectives: We hypothesized that concordance between patients' and nurses' assessments of symptom intensity improves over time.
Method: A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patient- and nurse-reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional. Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-Professional per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity and the one-way agreement intraclass correlation coefficient for well-being were used.
Results: The most prevalent symptoms, fatigue, dry mouth, and anorexia also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35%-69%). Agreement beyond chance was low to fair (0.146-0.539) and the intraclass correlation for well-being was low (0.25-0.28). Absolute concordance and agreement beyond chance did not improve over time.
Conclusion: Concordance between patients' and nurses' assessment of symptom prevalence is good, and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time.
Backgroud: The 6S Dialogue Tool was elaborated to provide knowledge to nurses about patients' preferences in congruence with the 6S person-centered palliative care model, which includes the S-concepts of self-image, symptom relief, self-determination, social relationships, synthesis and strategies. The tool needs to be scrutinized for appropriateness.
Aims: To develop and psychometrically test the 6S Dialogue Tool.
Design: A qualitative study investigating construct validity of the 6S Dialogue Tool.
Methods: Forty-six patients in palliative care services in Sweden responded to 15 questions from May 2015 to August 2016. Responses were analyzed with qualitative content analysis.
Results: Six categories, capturing the meaning of the 6S-concepts, were formulated: Maintaining everyday life; Challenges in everyday life; Maintaining control; Maintaining selected relationships; Appraisal of life; and Appraisal of the future.
Conclusion: The responses to the 6S Dialogue Tool questions reflect the intent of the 6S-concepts. Nurses should integrate the 6S-concepts and the questions in their approach to facilitate to co-create meaningful palliative care in dialogue with the patient.
Impact: Patients' preferences must be explored to co-create palliative care in accordance with their own needs and beliefs. The 6S Dialogue Tool questions are suitable for obtaining patients' preferences and could be used as an approach in palliative care. Patients, families and nurses will have the potential to co-create palliative care and to improve possibilities for patients to have an appropriate death.
Aim: To explore medication safety issues faced by general and palliative care community nurses working in rural and remote palliative care domiciliary settings.
Method: An online survey for nurses working in rural communities was conducted across the South East region of rural Victoria, Australia. Nurses from 18 community based health care organisations across the region were invited to participate in an anonymous survey addressing medication safety issues in the palliative care settings. Qualitative data obtained from the open-ended survey questions were analysed inductively.
Results: A total of 29 nurses completed the survey (response rate 28% from potential respondents). Most of the nurses were working in a rural practice providing a mixed model of community palliative care and community nursing. Medication safety issues raised by the nurses included; errors associated with dose administration aids, frequency of medications reviews undertaken by clinical pharmacists of clients’ medications, high occurrence of medications error reporting, lack of awareness of medications initiated by nurses and cytotoxic medications handling.
Conclusion: Targeted interventions addressing the identified issues raised by community general and palliative care nurses have the potential to improve medication safety in the domiciliary palliative care setting.
Families are struggling with many challenges in the final stages of patient life. It is important to understand what actions nurses do for the family of the end-of-life (EOL) patients. This study aimed to explain the main strategy of nurses’ dealing with the family of the EOL patients. Data were analyzed using conventional content analysis. Semistructured interviews were conducted on 32 nurses from hospitals in Tehran. Nurses used six measures of explaining the bitter reality, effective communication, management of violence, referral, consolation, and reinforcement. “Contingency help” was conceptualized as the main strategy. Nurses through “contingency help” were involved in solving the emotional, physical, financial, and spiritual needs of the family. Nurses will be able to apply the results of this study to the development of care policies for the family of the EOL patients.
BACKGROUND: The provision of end-of-life care remains a significant component of work for clinicians in critical care settings. Critical care nurses report that this area of practice receives limited attention in education and training.
OBJECTIVES: The objective of this study was to identify and describe the end-of-life care content in postgraduate critical care nursing programs in Australia.
METHODS: Using a descriptive exploratory research design, an Internet search was undertaken in August 2015, identifying 17 education providers offering postgraduate critical care nursing programs. Thirteen individuals agreed to participate in a structured telephone interview regarding end-of-life content in their postgraduate program. Descriptive statistics were calculated to summarise the data obtained.
RESULTS: Twelve participants reported that end-of-life care content was explicitly addressed in their postgraduate critical care nursing programs, yet variation in actual content areas covered was evident. The majority of programs addressed content related to organ donation (92%) and legal and ethical issues (77%). However, content least commonly identified as covered pertained to the work of the nurse in providing direct clinical care to the patient at the end of life and his or her family, including the physical changes experienced by the dying patient (31%), respiratory management encompassing withdrawal of ventilation and symptom management (23%), emotional support of family (23%), care of the body after death (23%), and the process of withdrawing life-sustaining treatment (15%). Participants (92%) agreed that end-of-life content was important in postgraduate critical care nursing programs, with 77% of participants agreeing that more time should be allocated to end-of-life content.
CONCLUSIONS: This study provides preliminary evidence of the variation in end-of-life content in postgraduate critical care nursing programs in Australia. Addressing gaps in end-of-life care content in formal education, including clinical care of the dying patient, is urgently needed to address the complexity of this phase of care that is so frequently provided in critical care units.
There is a growing number of people who need access to high-quality end of life care in the home setting. This requires timely assessments of needs, ensuring good symptom management and recognising the roles undertaken by carers. For some patients, a range of medications may need to be put in place to relieve end-of-life symptoms, using 'anticipatory prescribing'. District nurses must ensure that they acknowledge the patient's voiced preferences and be mindful of the safety issues that arise with the supply of controlled drugs in the home. This article highlights the challenges faced by district nurses providing or dealing with anticipatory prescribing during end-of-life care.
AIMS: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.
BACKGROUND: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.
DESIGN: A pre-experimental design with a one-group pre-test/posttests measurements.
METHODS: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.
RESULTS: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).
CONCLUSION: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.
IMPACT: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. This article is protected by copyright. All rights reserved.
Experiencing the end of life of a family member in the intensive care unit is clearly difficult. An important role of critical care nurses is to help family members through this challenging period. This article highlights a few clinically significant barriers and facilitators related to improving family experiences at the patient's end of life that have received less attention in the literature thus far. Facilitators include specific aspects of communication, the nurse's role as the coordinator of care, bereavement care, promoting a "good death," and caring for health care providers. Barriers include medical uncertainty and differences in values and culture.
Les notions fondamentales des soins palliatifs sont présentées en fiches synthétiques, avec des cas concrets et des situations cliniques. L'ouvrage aborde la douleur, les symptômes, le soin de confort, la souffrance psychique, la sédation ou encore l'éthique.
BACKGROUND: Health care providers should be able to provide good quality end-of-life care. A tool to evaluate the positive and negative consequences of caring for dying patients is warranted.
AIM: The aim of this study was to evaluate the psychometric properties of the Persian version of the End-of-Life Caregiving Experience Appraisal Scale (EOLCAS).
METHODS: This research was conducted in two phases. Phase I: The World Health Organization Protocol of forward-backward translation and an expert panel in order to determine face and content validity. Phase II: Survey development with 310 nurses who worked in critical care units, construct validity (construct, convergent and divergent validity), internal consistency (average inter-item correlation, Cronbach's alpha and McDonald's omega) and construct reliability were evaluated.
RESULTS: The exploratory factor analysis showed that the present scale (Persian version) has four factors: Negative physical-emotional and social consequences, transcendental communication, information deficits and future rumination, which explained 83·92% of the overall extracted variance. Convergent and divergent validity were confirmed for all factors. The internal consistency and construct reliability were acceptable.
CONCLUSION: The scale has a multidimensional concept that is sufficiently reliable and the use of the scale would be helpful in measuring consequences of caring for dying patients.
RELEVANCE TO CLINICAL PRACTICE: This scale makes a significant contribution in that it helps in the recognition of positive and negative consequences of critical care nurses' caring for dying patients.
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: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
OBJECTIVE: This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
DESIGN AND PARTICIPANTS: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
ETHICAL CONSIDERATIONS: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
FINDINGS: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
DISCUSSION: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
CONCLUSION: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
Canada's legalization of Medical Assistance in Dying (MAiD) in 2016 has had important implications for nursing regulators. Evidence indicates that registered nurses perform key roles in ensuring high-quality care for patients receiving MAiD. Further, Canada is the first country to recognize nurse practitioners as MAiD assessors and providers. The purpose of this article is to analyze the documents created by Canadian nursing regulatory bodies to support registered nurse and nurse practitioner practice in the political context of MAiD. A search of Canadian provincial and territorial websites retrieved 17 documents that provided regulatory guidance for registered nurses and nurse practitioners related to MAiD. Responsibilities of registered nurses varied across all documents reviewed but included assisting in assessment of patient competency, providing information about MAiD to patients and families, coordinating the MAiD process, preparing equipment and intravenous access for medication delivery, coordinating and informing health care personnel related to the MAiD procedure, documenting nursing care provided, supporting patients and significant others, and providing post death care. Responsibilities of nurse practitioners were identified in relation to existing legislation. Safety concerns cited in these documents related to ensuring that nurses understood their boundaries in relation to counseling versus informing, administering versus aiding, ensuring safeguards were met, obtaining informed consent, and documenting. Guidance related to conscientious objection figured prominently across documents. These findings have important implications for system level support for the nursing role in MAiD including ongoing education and support for nurses' moral decision making.
Healthcare professionals are often confronted with situations that increase their levels of stress and emotional fatigue, particularly in hospice or palliative care, because of direct contact with dying patients that can contribute to risk of burnout. Psychological support for doctors and nurses is crucial to voice any anxiety or distress experienced.This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo.Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
BACKGROUND: Palliative care is aimed at improving the quality of life of an individual with chronic noncommunicable disease and their care partners. Limitations in the provision of palliative care are mainly lack of knowledge and experience by nurses, fear of treating palliative persons, loss of control over treatment and fear of providing poor-quality palliative care to persons and care partners.
AIM: The aim of this study was to investigate the perception, knowledge and attitudes of palliative care by nurses who use palliative care approaches in practice, as well as the difference in perception, knowledge and attitudes of palliative care between nurses in Slovenia and Finland.
METHODS: We conducted a cross-sectional descriptive study. The survey included 440 nurses in clinical environments in Slovenia and Finland with a completed bachelor, master or doctoral level of education.
RESULTS: We found statistically significant differences between both countries in the perception of palliative care. Differences between the two countries in the knowledge of palliative care were not confirmed. We confirmed statistically significant differences between both countries in the attitudes of palliative nursing care.
CONCLUSION: Early person-centred palliative care is an important part of the holistic and integrative treatment of a person who has a disease with disturbing symptoms. For such an approach, it is important to educate nurses about knowledge, expectations, values and beliefs in developing a concept of person-centred palliative care to improve quality of life. The better perception, knowledge and attitudes of palliative care by nurses may help persons to improve and raise their quality of life, as well as diminish stress in their care partners and improve quality of life.
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.