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1.
Hematol Oncol Clin North Am ; 38(1): 55-76, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37353378

RESUMO

Cancer is a major public health problem in South America. The cancer mortality burden is increasing in the region due to its presentation at later stages, which is related to limited access to cancer care. This results in a noticeable inequity in provisions of cancer care including specialized screening programs, as well as cancer-related treatments such as personalized medicine, radiation therapy, palliative care, and survivorship services. Consequently, South America faces many challenges for cancer control, most of them deriving from a lack of funding and unequal distribution of resources and cancer services, affecting mostly the underserved populations in the region.


Assuntos
Atenção à Saúde , Neoplasias , Humanos , América do Sul/epidemiologia , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia , Cuidados Paliativos
2.
Int J Nurs Stud ; 149: 104624, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37980718

RESUMO

BACKGROUND: Dignity therapy is a psychotherapeutic intervention that is potentially effective in improving the well-being of patients receiving palliative care. However, the effects of dignity therapy are not well-understood. OBJECTIVE: We attempted to determine the effectiveness of dignity therapy in palliative patients to provide evidence that dignity therapy could be used in their care. DESIGN: Systematic review. PARTICIPANTS: The number of participants from all the studies was 1202 (intervention group, 619 patients; control group, 583 patients). METHODS: The review was reported according to the updated Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020. Relevant studies were collected with database searching of PubMed, Scopus, ScienceDirect, ProQuest Health & Medical Complete, CINAHL, and Psych Info databases from the inception of dignity therapy in 2002 to 2022. Literature was selected to identify trials of dignity therapy in patients with palliative care needs including cancer and non-cancer condition. Critical appraisal was performed independently by two reviewers to assess the relevance, reliability, and quality of the included studies. Two independent reviewers extracted data from all the studies. Data were synthesized using Review Manager version 4.5. RESULTS: A total of 16 studies involving 1202 participants were included. Most studies were rated as medium quality (n = 10, 62.5 %). The results showed a significant difference between the dignity and control groups in dignity-related distress (MD = -3.54, 95 % CI: [-4.66, -2.42], p < 0.00001), hope (MD = 2.27, 95 % CI: [1.32, 3.22], p < 0.0001), and quality of life (SMD = 0.45, 95 % CI: [0.15, 1.14], p = 0.00). However, no significant difference was observed in depression (MD = -0.44, 95 % CI: [-1.09, 0.20], p = 0.18); anxiety (MD = -0.21, 95 % CI: [-1.68, 1.27], p = 0.78), and spiritual well-being (MD = 2.41, 95 % CI: [-0.82, 5.64], p = 0.14). CONCLUSIONS: Dignity therapy was effective in improving dignity-related distress, quality of life, and levels of hope. A meta-analysis found no significant differences in patients' psychological or spiritual well-being. Differences in the providers of dignity therapy in the included studies may be the cause of the different findings regarding the varying effects of dignity therapy. Professional health workers need to be trained as dignity therapists to enhance the visibility of dignity therapy for patients. REGISTRATION: CRD42022375319. TWEETABLE ABSTRACT: Dignity therapy is an effective and promising intervention in palliative care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Respeito , Reprodutibilidade dos Testes
3.
Nurse Educ Today ; 132: 106037, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37976886

RESUMO

BACKGROUND: Palliative care is fraught with numerous challenges when it comes to conducting practical teaching as it involves caring for people facing the complexities of end-of-life and death. Insufficient clinical practice hinders nursing students from mastering knowledge, attitude and ability of hospice care. Virtual clinical simulation has demonstrated its effectiveness as a valuable educational tool in nursing. However, there is a dearth of evidence supporting its utilization in the context of palliative care practice education. OBJECTIVE: To develop a virtual clinical simulation education system and assess its impact on enhancing nursing students' knowledge, ability, and attitudes toward palliative care. DESIGN: A single-group pretest-posttest design and focus group interviews were employed. SETTING: The study was conducted at a medical university in southwest China. PARTICIPANTS: A total of 76 third-year nursing students participated. METHODS: Participants underwent a 1-hour learning session using the virtual clinical simulation education system. Pre-test and post-test evaluations were conducted to assess the participants' knowledge, ability, and attitudes toward palliative care. Survey questionnaire was administered to gauge the students' acceptance and perception of virtual clinical simulation. Focus group interviews were integrated to gain insight into students' subjective perceptions and feedback on the virtual clinical simulation. RESULTS: There were notable enhancements in the students' overall scores of palliative care knowledge, ability, and attitudes after the learning session. Students positively evaluated the usefulness and usability of virtual clinical simulation. Students' feedback regarding virtual clinical simulation can be categorized into four themes: the value of virtual clinical simulation education system, its role as a complement to clinical practice teaching, the enjoyment and accessibility of learning, and the technological challenges encountered. CONCLUSION: Virtual clinical simulation is an effective learning tool in palliative care practice education, which has the potential to enhance students' knowledge, ability, and attitudes toward palliative care.


Assuntos
Bacharelado em Enfermagem , Educação em Enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Estudantes de Enfermagem , Humanos , Cuidados Paliativos , Bacharelado em Enfermagem/métodos
4.
Pediatr Clin North Am ; 71(1): 71-82, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37973308

RESUMO

An increasing number of children are living for months and years with serious/complex illness characterized by long-term prognostic uncertainty, intensive interactions with medical systems, functional limitations, and often home medical technologies that shape the child's and family's quality of life. These families face many medical decision points that require intentional and iterative discussions about goals of care. Threats to cohesive goals of care include prognostic uncertainty, diffusion of medical responsibility, individual family context, and blended goals of care. This article offers strategies for addressing each of these challenges.


Assuntos
Planejamento de Assistência ao Paciente , Pediatria , Qualidade de Vida , Criança , Humanos , Cuidados Paliativos , Prognóstico , Relações Médico-Paciente , Relações Profissional-Família
5.
J Geriatr Psychiatry Neurol ; 37(1): 3-13, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37161303

RESUMO

OBJECTIVES: Older adults with psychiatric illnesses often have medical comorbidities that require symptom management and impact prognosis. Geriatric psychiatrists are uniquely positioned to meet the palliative care needs of such patients. This study aims to characterize palliative care needs of geriatric psychiatry patients and utilization of primary palliative care skills and subspecialty referral among geriatric psychiatrists. METHODS: National, cross-sectional survey study of geriatrics psychiatrists in the United States. RESULTS: Respondents (n = 397) reported high palliative care needs among their patients (46-73% of patients). Respondents reported using all domains of palliative care in their clinical practice with varied comfort. In multivariate modeling, only frequency of skill use predicted comfort with skills. Respondents identified that a third of patients would benefit from referral to specialty palliative care. CONCLUSIONS: Geriatric psychiatrists identify high palliative care needs in their patients. They meet these needs by utilizing primary palliative care skills and when available referral to subspecialty palliative care.


Assuntos
Transtornos Mentais , Psiquiatria , Humanos , Estados Unidos , Idoso , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Estudos Transversais , Psiquiatria Geriátrica
6.
Gastrointest Endosc Clin N Am ; 34(1): 91-109, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37973233

RESUMO

Endoscopic palliation of dysphagia for patients with inoperable esophageal cancer is complex, highly dependent on local expertise, and best done in a multidisciplinary fashion. Systemic therapy is the standard of care because it has been shown to improve survival. Esophageal stenting has traditionally been the most used endoscopic modality. Some modalities such as laser and photodynamic therapy are rarely used. There has been an increasing amount of data on cryotherapy, especially for patients with mild-to-moderate dysphagia on systemic chemotherapy. This article will discuss the latest evidence guiding the palliation of esophageal cancer.


Assuntos
Transtornos de Deglutição , Neoplasias Esofágicas , Fotoquimioterapia , Humanos , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Neoplasias Esofágicas/complicações , Neoplasias Esofágicas/terapia , Endoscopia/efeitos adversos , Cuidados Paliativos , Stents/efeitos adversos
7.
Soc Work Health Care ; 63(1): 53-70, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37970667

RESUMO

In this article, a communication framework of Connection First is presented to help close the empathy gap in mainstream health care, including palliative and end-of-life care. Expanding beyond biomedicine, Connection First involves rethinking and restructuring business-as-usual in health care. It shifts the typical transactional process during the initial intake session into one that is transformational. Connection First is a structural intervention and skillset comprised of the following elements: disrupting diagnosis, humanizing history, and repairing ruptures. These elements combine to help close the empathy gap in health care during the initial clinical encounter, before intake, and improve outcomes.


Assuntos
Empatia , Assistência Terminal , Humanos , Atenção à Saúde , Comunicação , Cuidados Paliativos
8.
BMC Palliat Care ; 22(1): 194, 2023 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-38044451

RESUMO

BACKGROUND: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. METHODS: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0-19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). RESULTS: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. CONCLUSIONS: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Criança , Humanos , Cuidadores , Canadá , Cuidados Paliativos
9.
Zhong Nan Da Xue Xue Bao Yi Xue Ban ; 48(9): 1325-1332, 2023.
Artigo em Inglês, Chinês | MEDLINE | ID: mdl-38044643

RESUMO

OBJECTIVES: For patients with tetralogy of Fallot (TOF) who are not suitable candidates for primary corrective surgery or have a high surgical risk, transcatheter right ventricular outflow tract (RVOT) stent implantation is considered a safe and effective palliative intervention. This study aims to investigate the therapeutic outcomes of RVOT stent implantation in neonates and infants with TOF in comparison with the modified Blalock-Taussig shunt (mBTS) and to compare the impact of the 2 palliative interventions on arterial oxygen saturation and pulmonary artery development in pediatric patients. METHODS: Clinical data of 32 patients with TOF admitted to the Second Xiangya Hospital of Central South University from March 2011 to March 2021 were retrospectively collected. The patients were divided into an mBTS group (undergoing mBTS, n=15) and a stent implantation group (undergoing RVOT stenting, n=17) according to the surgical procedures. The 2 groups were assessed and compared in the surgical-related arterial oxygen saturation, postoperative complication rate, mortality rate, and re-intervention rate. The development of the patients' main pulmonary artery, right pulmonary artery, and left pulmonary artery was assessed by z-scores according to echocardiographic results. RESULTS: The children in the stent implantation group were younger and less weighed compared with the mBTS group (both P<0.05). Compared with the preoperative period, children in the stent implantation group had significantly higher arterial oxygen saturation [(75±17)% vs (96±3)%, P=0.026]; z-scores of pulmonary trunk [(-2.82±1.27) points vs (0.86±0.77) points, P=0.014], right pulmonary artery [(-1.88±0.59) points vs (-0.28±0.71) points, P=0.011], and left pulmonary artery [(-2.34±0.36) points vs (-1.67±0.36) points, P=0.036] were significantly increased. However, there were no significant differences in arterial oxygen saturation and pulmonary artery z-scores between pre- and post-mBTS procedures (all P>0.05). CONCLUSIONS: RVOT stent would have good surgical outcomes used in TOF patients with low weight and severe comorbidities. It also leads to an higher postoperative oxygen saturation and better promotion of pulmonary artery growth with RVOT stent compared to mBTS.


Assuntos
Procedimento de Blalock-Taussig , Tetralogia de Fallot , Recém-Nascido , Lactente , Humanos , Criança , Tetralogia de Fallot/cirurgia , Tetralogia de Fallot/complicações , Procedimento de Blalock-Taussig/efeitos adversos , Procedimento de Blalock-Taussig/métodos , Estudos Retrospectivos , Cuidados Paliativos/métodos , Resultado do Tratamento , Stents
10.
Can Med Educ J ; 14(5): 121-144, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-38045065

RESUMO

Introduction: The College of Family Physicians of Canada (CFPC) offers the Certificate of Added Competence (CAC) program to designate a family physician with enhanced skills. In 2015, the College expanded its program to introduce enhanced certification in four new domains: Palliative Care, Care of the Elderly, Sports and Exercise Medicine, and Family Practice Anesthesia. In this study, we elicited perceptions from Canadian family physicians with and without the CAC on practice impacts associated with the program. Methods: Active family physicians in Canada with and without CACs were surveyed between November 2019 to January 2020. Descriptive statistics were generated to describe the perceptions of family physicians regarding the CAC program and its impacts on practice. Results: Respondents agreed with several benefits of the program including enhancing the capacity to deliver comprehensive care, alleviating the burden of patient travel by increasing the availability of care in rural and remote communities, and providing opportunities to engage in various collaborative care models and new leadership roles. All respondents perceived CAC holders to pursue the certificate to meet both professional interests and community needs. Conclusions: There is a need for strong and continued investment in systemic practice improvements that incentivize the delivery of comprehensive family medicine practice.


Introduction: Le certificat de compétence additionnelle (CCA) accordé par le Collège des médecins de famille du Canada (CMFC) vise à reconnaître un haut niveau de compétences chez un médecin de famille. En 2015, le Collège a élargi le titre de compétences additionnelles à quatre nouveaux domaines : soins palliatifs, soins aux personnes âgées, médecine du sport et de l'exercice, et anesthésie en médecine familiale. Dans cette étude, nous avons recueilli les perceptions de médecins de famille titulaires et non titulaires d'un CCA sur l'influence de pratiques associées au programme de certification. Méthodes: Des médecins de famille actifs au Canada, titulaires et non titulaires du CCA, ont été interrogés entre novembre 2019 et janvier 2020. Des statistiques descriptives ont été générées pour décrire leurs perceptions concernant le Certificat et ses impacts sur la pratique. Résultats: Les répondants s'entendaient pour reconnaître au CCA plusieurs avantages, notamment le fait d'améliorer la capacité des médecins à fournir des soins complets, de leur offrir la possibilité de s'engager dans divers modèles de soins collaboratifs et de nouveaux rôles de leadership, et d'alléger le fardeau des déplacements des patients en augmentant la disponibilité des soins dans les populations rurales et éloignées. Tous les répondants estiment que les médecins recherchent l'obtention de ce titre de compétence pour répondre à la fois à leurs intérêts professionnels et aux besoins de la collectivité. Conclusions: Il faut investir de manière importante et continue dans des améliorations systémiques qui favoriseront une pratique holistique de la médecine familiale.


Assuntos
Medicina de Família e Comunidade , Médicos de Família , Humanos , Idoso , Canadá , Inquéritos e Questionários , Cuidados Paliativos
11.
BMC Health Serv Res ; 23(1): 1330, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38037107

RESUMO

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.


Assuntos
COVID-19 , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Canadá/epidemiologia , COVID-19/epidemiologia , Morte
12.
BMC Palliat Care ; 22(1): 192, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38037061

RESUMO

BACKGROUND: The pandemic Era has forced palliative care professionals to use a dignity-in-care approach in different settings from the classic ones of palliative care: acute and intensive care. We explored the meanings of dignity for patients, their family members, and clinicians who have experienced COVID-19 in the acute and intensive care setting. METHODS: A qualitative, prospective study by means of semi-structured interviews with patients hospitalized for COVID-19, family members, and clinicians who care for them. FINDINGS: Between March 2021 and October 2021, we interviewed 16 participants: five physicians, three nurses, and eight patients. None of the patients interviewed consented for family members to participate: they considered it important to protect them from bringing the painful memory back to the period of their hospitalization. Several concepts and themes arose from the interviews: humanity, reciprocity, connectedness, and relationship, as confirmed by the literature. Interestingly, both healthcare professionals and patients expressed the value of informing and being informed about clinical conditions and uncertainties to protect dignity. CONCLUSIONS: Dignity should be enhanced by all healthcare professionals, not only those in palliative care or end-of-life but also in emergency departments.


Assuntos
COVID-19 , Pandemias , Humanos , Respeito , Estudos Prospectivos , Cuidados Paliativos , Pesquisa Qualitativa
13.
Int J Palliat Nurs ; 29(11): 528-536, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039125

RESUMO

BACKGROUND: Providing end-of-life care in a patient's home is challenging, especially if the nurse is from a different ethnic background from the patient. Evidence shows that people from an ethnic minority background often experience poorer end-of-life care due to care providers not understanding their care needs. AIM: To explore the experiences of community nursing staff caring for patients with an ethnic minority background at the end of their life. METHOD: Using a qualitative descriptive approach, 16 semi-structured interviews were conducted and the data was thematically analysed. FINDING: Participants dealt with large tight-knit families, paternalism and controlling behaviours. There was a mistrust of Western palliative medicine. Language barriers and challenges were faced by the nursing staff, resulting in difficult conversations with the families. Different levels of the nursing staff's spiritual/cultural competencies were also identified. The COVID-19 pandemic intensified the challenges. CONCLUSION: This research has shed light on the challenges of individualising end-of-life care in a culturally diverse community in the UK. The nursing staff's cultural/spiritual competencies were challenged.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Etnicidade , Pandemias , Grupos Minoritários , Pesquisa Qualitativa
14.
Int J Palliat Nurs ; 29(11): 518-526, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039127

RESUMO

BACKGROUND: People in Thailand receiving palliative care at home can have complex needs and this means that the family caregiver can have a high burden of care. AIM: To assess the impact of a nursing care activities for a home-based palliative care programme (NHBPC) on the care burden among family caregivers and the care quality in older people at the palliative care stage. METHODS: This quasi-experimental repeated measure study was used to investigate the effects of the nursing care activities for a NHBPC programme. RESULTS: The mean caregiving burden and care quality scores in the experimental and control groups at post-test and 2-weeks follow-up showed significant differences (p<.05). In addition, improvement was not seen in the control group. CONCLUSION: The NHBPC programme significantly improved caregiving burden and quality of care in Thai older people and their family caregiver. This confirms that the NHBPC programme plays a crucial role in helping them to improve quality of life.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Idoso , Cuidadores , Qualidade de Vida , Tailândia
15.
Int J Palliat Nurs ; 29(11): 548-552, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039120

RESUMO

The economic challenges for researchers in palliative care is an emerging and challenging topic. Knowing where, how and how much is spent is fundamental for palliative care (PC) provision to be increasingly efficient and with lower costs. To accomplish this, there are three important factors to consider: early access to PC; specialised PC using standardised procedures and informal and home-based PC. Beyond costs, ethical aspects should always be present when this care is being provided in its different forms, locations and contexts. For those who want to study the economic challenges in PC, they need to comprehend the complexity of them, since they will always come from a careful articulation between ethics, the person´s needs, the cost of the care and who these costs are charged to.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos
16.
Int J Palliat Nurs ; 29(11): 562-564, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039124

RESUMO

Synopses of a selection of recently published research articles of relevance to palliative care.


Assuntos
Pesquisa Biomédica , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidados Paliativos
17.
Int J Palliat Nurs ; 29(11): 556-560, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039123

RESUMO

This monocentric pilot study aimed to assess whether there are significant changes in hair cortisol levels and cognitive functioning at baseline and after 3 weeks of hospitalisation in older palliative care patients, and to ascertain whether hair cortisol can be used as a pertinent stress biomarker in this population. Hair cortisol concentration levels were measured with the use of an enzyme-linked immunosorbent assay (ELISA), while cognitive functions were assessed by using 16-point Mini-Mental State Examination 2 (MMSE-2): brief version. A statistically significant difference in mean hair cortisol levels at the start of the hospitalisation was found when compared to the 3-week follow-up (p=0.007). No statistically significant differences were observed regarding MMSE-2 scores using the same time points. These results have direct clinical implications and set the stage for further research endeavours in the field.


Assuntos
Hidrocortisona , Cuidados Paliativos , Humanos , Idoso , Hidrocortisona/análise , Projetos Piloto , Cabelo/química , Cognição
18.
Int J Palliat Nurs ; 29(11): 538-546, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-38039121

RESUMO

BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.


Assuntos
Educação a Distância , Enfermeiras e Enfermeiros , Humanos , Cuidadores , Austrália , Cuidados Paliativos
19.
BMC Palliat Care ; 22(1): 193, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-38041060

RESUMO

BACKGROUND: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. METHODS: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. RESULTS: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. CONCLUSIONS: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.


Assuntos
Planejamento Antecipado de Cuidados , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Criança , Cuidados Paliativos/métodos , Pais/psicologia , Tomada de Decisão Compartilhada
20.
PLoS One ; 18(11): e0286493, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37930977

RESUMO

BACKGROUND: Nearly 50 million people worldwide have dementia and the increasing numbers requiring end-of-life and palliative care, has led to national efforts to define standards of care for this patient group. Little research, however, has been done to date about the experience of hospice care for people with dementia accessing these services. This study explores the views of hospice dementia care for bereaved carers of people with dementia and hospice clinicians. METHODS: We used purposive sampling for participant recruitment. Semi-structured qualitative interviews were conducted with bereaved carers and hospice clinical staff. Interviews were audio recorded and the transcriptions were analysed through thematic analysis. A total of 12 participants were interviewed from one service in the Northwest region in the UK. All were female and white British. RESULTS: Participants described their experience of hospice dementia care in three main themes: Pre-access to service, roles and responsibility within hospice care, ease and difficulty of last period of end-of-life care. CONCLUSION: Rapid response teams delivering hospice home care could represent a better option to inpatient care and may be preferred by patients. This type of service, however, may require joined-up care with other community services, and this type of care needs to be considered and planned. Future studies should evaluate this type of community care.


Assuntos
Demência , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Feminino , Masculino , Cuidadores , Cuidados Paliativos , Pesquisa Qualitativa
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