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1.
BMC Palliat Care ; 23(1): 101, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38627710

RESUMO

BACKGROUND: This study addresses the issue of shared decision-making (SDM) in a Norwegian home-based palliative care setting. The significance of patient involvement in SDM is widely acknowledged, and many patients want to participate in decisions about care and treatment. Yet, it remains a need for more knowledge regarding the initiators and approaches of SDM in the context of home-based palliative care, particularly from the patients' perspective. The aim of this study is to understand patients' experiences and preferences for SDM in home-based palliative care, seeking to enhance the quality of care and direct the planning of healthcare services. METHODS: We used a qualitative explorative design. A hermeneutic approach was employed, and data was collected through in-dept interviews with 13 patients. RESULTS: The study uncovered an overarching theme of "Navigating to reach own decisions," comprising three sub-themes: "To be trapped in life without decisions to act on"; "To surrender to others and let others deal with decisions"; "To continue to be oneself without focusing on disease and decision-making". CONCLUSIONS: The findings underscore the need for flexible, person-centered approaches in SDM, tailored to the fluctuating health literacy and changing preferences of patients in palliative care settings. Our study contributes to the understanding of SDM in palliative care by highlighting how patients navigate the balance between autonomy and reliance on HCPs. Future research should explore how healthcare systems, including HCPs' roles in the system, can adapt to the patients' dynamic needs, to ensuring that SDM will remain a supportive and empowering process for patients at all stages of their disease.


Assuntos
Letramento em Saúde , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidados Paliativos , Tomada de Decisão Compartilhada , Participação do Paciente , Tomada de Decisões
2.
BMC Palliat Care ; 23(1): 85, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38556894

RESUMO

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Córnea , Pacientes Internados , Austrália do Sul , Pesquisa Qualitativa
3.
BMC Palliat Care ; 23(1): 79, 2024 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-38519944

RESUMO

BACKGROUND: The World Health Organization identifies pharmacists as a key resource in palliative care. However, the roles of these professionals in end-of-life care at home remain poorly understood, and community pharmacists themselves sometimes struggle to recognize their true role in this care. The aim of our study was to analyze community pharmacists' representations of their roles in palliative care at home in France. METHODS: The methodology was qualitative and based on semi-structured interviews with community pharmacists (n = 26). The analysis of the interviews was carried out using a qualitative content approach with thematic and lexical analysis. RESULTS: Three main elements of the community pharmacist's role were identified: drug expertise, care management, and psychosocial support for patients and their families. CONCLUSIONS: This study highlights a wide variety of roles adopted by French community pharmacists in palliative care at home. Some of these roles, which are in line with WHO recommendations on palliative care, have been little described to date. These roles of community pharmacists in home-based palliative care could be better recognized, and the players better integrated into end-of-life care systems at home, in order to improve such care. TRIAL REGISTRATION: This work was carried out within the framework of a call for projects from the Fondation de France and has received the approval of the University Clermont Auvergne Research Ethics Committee (no. IRB00011540-2021-60).


Assuntos
Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Farmacêuticos/psicologia , Cuidados Paliativos , Papel Profissional
15.
Int J Palliat Nurs ; 30(1): 5-10, 2024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-38308605

RESUMO

BACKGROUND: No specific evaluation of palliative care (PC) has been carried out to date despite its effective integration into Moroccan healthcare strategy. AIMS: To analyse the evolution of PC-related research in Morocco over the last two decades. METHODS: In this study, articles indexed in Web Of Science and PubMED that include the words Morocco and palliative, in their content, in French and English, with at least one author affiliated to a Moroccan institution and published between 2000 and 2020, were evaluated with bibliometrics methods to determine a timeline, a mapping of publications and collaborations, and the main journals, types and topics of publications. FINDINGS: A total of 87.1% of articles have been published since 2011. Some 82.1% concern oncology. A total of 48.5% were produced within the same institution and international collaboration represents only 9.9% of the articles. CONCLUSION: The number of PC related articles have increased since 2011, especially in regions with a greater supply of oncology care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Marrocos , Bibliometria , Publicações
16.
Support Care Cancer ; 32(2): 141, 2024 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-38305835

RESUMO

PURPOSE: Since 2010, a comprehensive symptom/problem (S/P) assessment has been carried out in Danish specialist palliative care using the EORTC QLQ-C15-PAL questionnaire and the open-ended "Write In three Symptoms/Problems" (WISP) instrument. On WISP patients can report up to three S/Ps not included in the EORTC QLQ-C15-PAL. However, little is known about which S/Ps patients with non-cancer diseases report using WISP. Therefore, we investigated the prevalence and severity of S/Ps reported on WISP by non-cancer patients in specialist palliative care and compared these S/Ps with those previously reported by cancer patients. METHODS: This register-based study collected data from the Danish Palliative Care Database. We included adult patients with non-cancer diseases answering the EORTC QLQ-C15-PAL at admittance to specialist palliative care between 2016 and 2021. WISP responses were qualitatively categorized, and their prevalence and severity calculated. RESULTS: Of the 2323 patients with non-cancer diseases answering the EORTC QLQ-C15-PAL, 812 (34.9%) reported at least one S/P using WISP. A total of 1340 S/Ps were reported on WISP, of which 56.7% were not included in the EORTC QLQ-C15-PAL (i.e., were new). Edema, existential problems, dizziness, cough, and dysphagia were the most prevalent new S/Ps. Overall, 88.7% of the S/Ps were scored as moderate-severe. The prevalence of S/Ps reported on WISP did not significantly differ between cancer and non-cancer patients, except for existential problems, dysphagia, myoclonus, speaking problems, sweats, and vomiting. CONCLUSION: The similarities and differences in the prevalence of the most common S/Ps reported on WISP confirm that WISP improves symptom assessment regardless of patient diagnosis.


Assuntos
Transtornos de Deglutição , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Humanos , Cuidados Paliativos , Neoplasias/terapia , Qualidade de Vida , Inquéritos e Questionários
18.
J Hosp Palliat Nurs ; 26(2): 68-73, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38363149

RESUMO

There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical complexity live longer, and the demand for pediatric palliative care is growing. As programs expand to meet this need, there are new opportunities for pediatric palliative APRNs to practice outside acute care consultative models, within large children's hospitals. The aim of this article was to describe the expanding role of the pediatric palliative APRN using a progressive case study that describes how these expanding roles can collaborate using evidence-based practice and expert consensus to define their roles. If pediatric palliative APRNs hesitate to define their practice, others will define it for them.


Assuntos
Prática Avançada de Enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Humanos , Criança , Cuidados Paliativos , Consenso
19.
BMJ Open ; 14(2): e074628, 2024 Feb 26.
Artigo em Inglês | MEDLINE | ID: mdl-38413159

RESUMO

OBJECTIVES: This study aimed to explore the experiences of multidisciplinary medical teams in implementing humanistic palliative care within the oncology ward. DESIGN: Purposive and snowball sampling methods were used in this qualitative study, which involved conducting semistructured interviews to gather personal experiences from members of multidisciplinary medical teams providing humanistic palliative care in the oncology ward. SETTING: The research was conducted in the oncology ward of a tertiary hospital located in Foshan, China. PARTICIPANTS: Participants included 4 doctors, 12 nurses and 2 medical social workers who form the multidisciplinary medical team responsible for delivering humanistic palliative care to patients with cancer in oncology wards. RESULTS: Phenomenological qualitative analysis yielded 3 main themes and 9 subthemes. The identified themes were as follows: (1) conceptual change, (2) concrete actions and (3) facilitators and barriers to the implementation of humanistic palliative care. CONCLUSION: The findings suggest a need for strengthening humanistic consciousness among multidisciplinary palliative care teams working in oncology wards, although there has been a gradual improvement in humanistic care behaviours. Furthermore, facilitators and barriers coexist in the implementation of humanistic palliative care. Efforts should be directed towards refining mechanisms that promote humanistic palliative care, fostering the enthusiasm of healthcare professionals, conducting systematic training to enhance their humanistic care abilities and striving for improvements in the quality of medical services for the benefit of both patients and their families.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Oncologia , Pessoal de Saúde
20.
J Palliat Med ; 27(4): 487-494, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38330403

RESUMO

Background: Terminological problems concerning sedation in palliative care and consequences for research and clinical decision making have been reported frequently. Objectives: To gather data on the application of definitions of sedation practices in palliative care to clinical cases and to analyze implications for high-quality definitions. Design: We conducted an online survey with a convenience sample of international experts involved in the development of guidelines on sedation in palliative care and members of the European Association for Palliative Care (EAPC). Participants were asked to apply four published definitions to four case vignettes. Data were analyzed using descriptive statistics. Results: A total of 32 experts and 271 EAPC members completed the survey. The definitions were applied correctly in n = 2200/4848 cases (45.4%). The mean number of correct applications of the definitions (4 points max.) was 2.2 ± 1.14 for the definition of the SedPall study group, 1.8 ± 1.03 for the EAPC definition, 1.7 ± 0.98 for the definition of the Norwegian Medical Association, and 1.6 ± 1.01 for the definition of the Japanese Society of Palliative Medicine. The rate of correct applications for the 16 vignette-definition pairs varied between 70/303 (23.1%) and 227/303 (74.9%). The content of definitions and vignettes together with free-text comments explains participants' decisions and misunderstandings. Conclusions: Definitions of sedation in palliative care are frequently incorrectly applied to clinical case scenarios under simplified conditions. This suggests that clinical communication and research might be negatively influenced by misunderstandings and inconsistent labeling or reporting of data. Clinical Trial Registration Number: DRKS00015047.


Assuntos
Sedação Profunda , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Medicina Paliativa , Humanos , Cuidados Paliativos , Inquéritos e Questionários , Comunicação
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