Palliative care at the end of life in pediatric oncology: a nursing perspective

2021 ◽  
Vol 42 ◽  
Author(s):  
Tatiana Pifano da Silva ◽  
Liliane Faria da Silva ◽  
Emília Gallindo Cursino ◽  
Juliana Rezende Montenegro Medeiros de Moraes ◽  
Rosane Cordeiro Burla de Aguiar ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Professional Training ◽  
Quality Care ◽  
Structured Interviews ◽  
The Family ◽  
Pediatric Inpatient ◽  
Nursing Professionals

ABSTRACT Objectives: To identify the knowledge of nursing professionals about palliative care in pediatric oncology and their needs for end-of-life care. Method: A descriptive study with a qualitative approach, carried out in a federal hospital in Rio de Janeiro specialized in oncology. 29 nursing professionals from the pediatric inpatient sector participated in semi-structured interviews between July and August 2019. Data submitted to textual lexicographic analysis with Iramuteq. Results: Professionals are aware of the use of comprehensive care, centered on the family, aimed at comfort, and dignified death. They highlighted the need for psychological support for the nursing team, in addition to effective communication with a multidisciplinary team and carrying out actions for professional training in pediatric palliative care. Final considerations: A study showed care that is consistent with the precepts of palliative care and points out gaps in training, highlighting the need for professional training with a view to quality care.

scholarly journals Nursing care in palliative care in pediatric oncology

2021 ◽  
Vol 5 (3) ◽  
pp. 91-94
Author(s):  
Joana Muniz Mendonça ◽  
Luana Luzia de Assis Arruda Corbari ◽  
Matheus Mychael Mazzaro Conchy ◽  
Renan da Silva Bentes
Keyword(s):  
Palliative Care ◽  
Nursing Care ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Pediatric Patients ◽  
Terminal State ◽  
The Family ◽  
The Face ◽  
Nursing Professionals ◽  
Informative Text

This research has as general theme "Nursing care in palliative care in pediatric oncology", an approach that needs to be further discussed due to the need to prepare nursing professionals working in the pediatric sector with cancer patients who are terminally. Thus, an informative text was produced with information based on authors who have already conducted research on this theme, with a qualitative approach, because this is a Bibliographic research. To guide this research, the general objective was to identify the knowledge and reactions of nursing professionals in pediatric cancer care and as specific objectives to identify the perceptions and feelings that permeate pediatric nursing practice in relation to cancer, treatment, and its implications and to know the care/care activities aimed at children hospitalized in the pediatric oncology sector. It is concluded that the courses directed to nursing need to offer disciplines that prepare these professionals to deal with pediatric patients who are in terminal state, preparing them to comfort the family in the face of the failure of the treatments that the patient underwent.

scholarly journals End-of-life care in children and adolescents with cancer: perspectives from a French pediatric oncology care network

2021 ◽  
pp. 030089162110133
Author(s):  
Sophie Blais ◽  
Sarah Cohen-Gogo ◽  
Elodie Gouache ◽  
Lea Guerrini-Rousseau ◽  
Benoit Brethon ◽  
...  
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Developed Countries ◽  
Median Number ◽  
Life Care ◽  
Do Not Resuscitate

Background: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period. Objective: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or hematologic malignancies (HM) who died from tumor progression in the Île-de-France area. Methods: This is a regional, multicentric, retrospective review of medical files of all children and adolescents with cancer who died over a 1-year period. Extensive data from the last 3 months of life were collected. Results: A total of 99 eligible patients died at a median age of 9.8 years (range, 0.3–24 years). The most frequent terminal symptoms were pain (n = 86), fatigue (n = 84), dyspnea (n = 49), and anorexia (n = 41). Median number of medications per patient was 8 (range, 3–18). Patients required administration of opioids (n = 91), oxygen (n = 36), and/or sedation (n = 61). Decision for palliative care was present in all medical records and do-not-resuscitate orders in 90/99 cases. Symptom prevalence was comparable between children and adolescents with ST and HM. A wish regarding the place of death had been expressed for 64 patients and could be respected in 42 cases. Death occurred in hospital for 75 patients. Conclusions: This study represents a large and informative cohort illustrating current pediatric palliative care approaches in pediatric oncology. End-of-life remains an active period of care requiring coordination of multiple care teams.

scholarly journals Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study (Preprint)

2020 ◽  
Author(s):  
Yu-Rui Wu ◽  
Tzu-Jung Chou ◽  
Yi-Jen Wang ◽  
Jaw-Shiun Tsai ◽  
Shao-Yi Cheng ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Discharge Planning ◽  
Control Measures ◽  
Treatment Center ◽  
Life Care ◽  
Palliative Care Setting ◽  
The Family ◽  
Care Family

BACKGROUND In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. OBJECTIVE We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. METHODS Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. RESULTS From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as <i>good</i> or <i>very good</i> (36%), whereas 9 were <i>neutral</i> (64%). CONCLUSIONS Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

Nurses’ Communication With the Families of Patients at the End-of-Life

2020 ◽  
pp. 003022282095993
Author(s):  
Reza Norouzadeh ◽  
Monireh Anoosheh ◽  
Fazlollah Ahmadi
Keyword(s):  
Qualitative Research ◽  
Content Analysis ◽  
End Of Life ◽  
Quality Care ◽  
Main Theme ◽  
Ethical Sensitivity ◽  
Structured Interviews ◽  
The Family ◽  
Conventional Content Analysis ◽  
Nurses Perceptions

Background Effective communication is important in providing quality care to families at the end-of-life. In the end-of-life situations, the nurses’ views on how to communicate with the family are not well understood. Aim This study was conducted to explore the nurses' experiences of their communication with families of patients at the end-of-life situations. Methods The authors used standards for reporting qualitative research. The data were analyzed by conventional content analysis. Semi-structured interviews were conducted with 24 Iranian nurses who had the experiences of dealing with patients’ families at the end-of-life. Results Nurses’ perceptions of communication with families emerged base on the main theme: “Disrupted communication” consisting of two categories: “restricted communication” and “abortive communication.” Conclusion The results of this study highlight the need to increase the professional and ethical sensitivity of nurses in dealing with patients' families at the end-of-life.

scholarly journals At the Grave We Make Our Song: A Palliative Care Study in Rural Guatemala

2016 ◽  
Vol 29 (1) ◽  
pp. 38-45 ◽  
Author(s):  
Erin Traister ◽  
Kim L. Larson ◽  
Dell Hagwood
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Involvement ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
The Family ◽  
Qualitative Descriptive ◽  
Training Opportunities

Purpose: We sought to understand decision making, family involvement, and cultural factors that influence palliative care for Guatemalans. Design: A qualitative descriptive study was conducted in Guatemala to explore palliative care experiences among seven participants. Findings: The overarching theme was Relief from Suffering, reinforced by three support systems: the family, community rezadora, and priest. The family made decisions and provided physical care. The rezadora sang prayers and prepared the home altar. The priest provided traditional sacraments. Discussion: The role of the rezadora should be considered in providing palliative care to Guatemalans. Some Guatemalans are unfamiliar with or have difficulty understanding the role of the nurse in palliative and end-of-life care. Implications: We suggest training opportunities using international resources to enhance the role for Guatemalan nurses in end-of-life care. Palliative care nurses in the United States may benefit from incorporating the rezadora into strategies that extend these services to Guatemalans.

scholarly journals Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study

10.2196/22069 ◽  
2020 ◽  
Vol 8 (10) ◽  
pp. e22069
Author(s):  
Yu-Rui Wu ◽  
Tzu-Jung Chou ◽  
Yi-Jen Wang ◽  
Jaw-Shiun Tsai ◽  
Shao-Yi Cheng ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Discharge Planning ◽  
Control Measures ◽  
Treatment Center ◽  
Life Care ◽  
Palliative Care Setting ◽  
The Family ◽  
Care Family

Background In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

Good end-of-life care in nursing home according to the family carers’ perspective: A systematic review of qualitative findings

2019 ◽  
Vol 33 (6) ◽  
pp. 589-606 ◽  
Author(s):  
Silvia Gonella ◽  
Ines Basso ◽  
Maria Grazia De Marinis ◽  
Sara Campagna ◽  
Paola Di Giulio
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Common Ground ◽  
Life Care ◽  
Family Carers ◽  
Basic Care ◽  
The Family

Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method. Data Sources: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. Results: In all, 18 studies met inclusion criteria. A ‘life crisis’ often resulted in a changed need of care, and the transition towards palliative care was sustained by a ‘patient-centered environment’. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident’s end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. Conclusion: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.

Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care

2017 ◽  
Vol 34 (6) ◽  
pp. 374-380 ◽  
Author(s):  
Lauren Ranallo
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Terminal Phase ◽  
Clear Understanding ◽  
Life Care ◽  
Oncology Patients ◽  
Children With Cancer

Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child’s death. In order to alleviate potential suffering the child may experience, there needs to be an emphasis on supportive care and symptom management. There are barriers to implementing palliative care for children with cancer, including the need to clarify the palliative care philosophy, parental acknowledgement and acceptance of a child’s disease and uncertain future, nursing awareness of services, perception of availability, and a shortage of research guidance. It is important for nurses and clinicians to have a clear understanding of the fundamentals of palliative and end-of-life care for pediatric oncology patients to receive the best care possible.

scholarly journals Palliative care in the home: perceptions of nurses in the Family Health Strategy

2012 ◽  
Vol 25 (spe2) ◽  
pp. 13-18
Author(s):  
Michelle Freire Baliza ◽  
Regina Szylit Bousso ◽  
Vívian Marina Calixto Damasceno Spineli ◽  
Lucía Silva ◽  
Kátia Poles
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Exploratory Study ◽  
Family Health ◽  
Qualitative Approach ◽  
Structured Interviews ◽  
Health Strategy ◽  
The Family ◽  
Home Context ◽  
Family Health Strategy

OBJECTIVE: To understand the perception of nurses from the Family Health Strategy in relation to palliative care in the home. METHODS: A descriptive, exploratory study with a qualitative approach conducted with nine nurses from the Family Health Strategy of the municipality of Lavras - MG. Semi-structured interviews were conducted and data were subjected to content analysis. RESULTS: The various dimensions of care in the home context were identified, along with the performance and limitations of nurses in the care of the patient and his family at end of life. The capacity to establish a bond, by the proximity to people who receive their care, is a remarkable point of the action of these nurses with patients and families in end of life situations. CONCLUSION: The nurses consider the patient and his family as the unit of care, they have the opportunity to share solidarity, experiences and learning, not only from a professional standpoint, but above all, from a human one.

scholarly journals The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

2021 ◽  
pp. 026921632110647
Author(s):  
Helena Coleman ◽  
Andy Sanderson-Thomas ◽  
Catherine Walshe
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Interpretative Phenomenological Analysis ◽  
Well Being ◽  
Phenomenological Analysis ◽  
Life Care ◽  
Structured Interviews ◽  
Care Services ◽  
The Impact

Background: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers ( n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it’s where I’m meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients’ fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

Sign in / Sign up

Export Citation Format

Share Document