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CONTEXT: Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. OBJECTIVES: This study developed quality indicators for the integration of oncology and home palliative care in Japan. METHODS: We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. RESULTS: Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. CONCLUSION: Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.
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Técnica Delphi , Serviços de Assistência Domiciliar , Neoplasias , Cuidados Paliativos , Indicadores de Qualidade em Assistência à Saúde , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/organização & administração , Cuidados Paliativos/métodos , Serviços de Assistência Domiciliar/normas , Serviços de Assistência Domiciliar/organização & administração , Japão , Neoplasias/terapia , Oncologia/organização & administração , Oncologia/normasRESUMO
PURPOSE: To explore whether and how eHealth solutions support the dignity of healthcare professionals and patients in palliative care contexts. METHOD: This qualitative study used phenomenographic analysis involving four focus group interviews, with healthcare professionals who provide palliative care to older people. RESULTS: Analysis revealed four categories of views on working with eHealth in hierarchical order: Safeguarding the patient by documenting-eHealth is a grain of support, Treated as less worthy by authorities-double standards, Distrust in the eHealth solution-when the "solution" presents a danger; and Patient first-personal contact with patients endows more dignity than eHealth. The ability to have up-to-date patient information was considered crucial when caring for vulnerable, dying patients. eHealth solutions were perceived as essential technological support, but also as unreliable, even dangerous, lacking patient information, with critical information potentially missing or overlooked. This caused distrust in eHealth, introduced unease at work, and challenged healthcare professionals' identities, leading to embodied discomfort and feeling of a lack of dignity. CONCLUSION: The healthcare professionals perceived work with eHealth solutions as challenging their sense of dignity, and therefore affecting their ability to provide dignified care for the patients. However, healthcare professionals managed to provide dignified palliative care by focusing on patient first.
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Atitude do Pessoal de Saúde , Grupos Focais , Pessoal de Saúde , Cuidados Paliativos , Pessoalidade , Pesquisa Qualitativa , Respeito , Telemedicina , Humanos , Cuidados Paliativos/psicologia , Feminino , Masculino , Idoso , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Adulto , ConfiançaRESUMO
BACKGROUND: France allows deep sedation for pain relief, but not for euthanasia. In anticipation of an increase in home-based palliative care, the role of general practitioners is central to the design of outpatient palliative care services. This study aimed to describe the knowledge, attitudes, and practices of general practitioners in mainland France regarding palliative and end of life care. METHODS: This was a national descriptive cross-sectional study within the Sentinelles network. Self-report questionnaires were distributed to general practitioners between November 2020 and November 2021. A descriptive analysis was carried out. RESULTS: Out of the 123 participating general practitioners, 84% had received academic training in palliative care (n = 104). While a significant majority (69%) expressed comfort in pain management, only a quarter (25%) declared that they were competent at indicating deep and continuous sedation for pain relief. Awareness of outpatient palliative care facilities close to their place of practice such as hospitalization at home was over 97% (n = 117/120). Awareness of hospital facilities, including identified palliative care beds on hospital wards and palliative care units, was lower (75% (n = 59/79) and 86% (n = 86/100), respectively). CONCLUSIONS: Our results suggest that French general practitioners are reasonably aware of palliative care resources available. However, there is room for improvement, particularly in understanding hospital-based facilities. Furthermore, a quarter of the general practitioners expressed discomfort with deep and continuous sedation for pain relief, highlighting the need for increased training in this specific aspect of palliative and end of life care.
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Clínicos Gerais , Cuidados Paliativos , Humanos , Estudos Transversais , França , Clínicos Gerais/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Conhecimentos, Atitudes e Prática em Saúde , Assistência Terminal , Manejo da Dor/métodosRESUMO
BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.
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Planejamento Antecipado de Cuidados , Empatia , Neoplasias , Cuidados Paliativos , Pesquisa Qualitativa , Assistência Terminal , Humanos , Neoplasias/terapia , Neoplasias/psicologia , Feminino , Masculino , Cuidados Paliativos/psicologia , Idoso , Pessoa de Meia-Idade , Assistência Terminal/psicologia , Serviços de Assistência Domiciliar , Cuidadores/psicologia , Idoso de 80 Anos ou mais , Atenção Primária à SaúdeRESUMO
BACKGROUND: The shift of treatment of paediatric cancer patients to include more care at home puts a lot of pressure on health care professionals (HCPs) to prepare and train parents on safe and correct drug handling at home. Parents must take in and understand the information presented to them while coping with their own fear related to their child's cancer diagnosis. In Sweden, parents are expected to handle and manipulate oral anticancer drugs (OADs) in the home setting. There is however a lack of a standardized method to inform and educate parents on how to handle OADs in a correct way at home. AIM: To describe parents' experiences of handling OADs at home after participating in an educational intervention. METHOD: Educational intervention in the present study aimed to improve parents' knowledge in key concepts that is, handling OADs at home by using information presented in different forms. Fifteen parents to 12 children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis. RESULTS: Parents' experiences are presented in categories: Relieved stress, Awareness of own exposure, Facilitated my everyday life, Parents need continued support individually. The educational intervention resulted in both positive and negative feelings, increased awareness of drug exposure and correct drug handling at home. Practical training and information presented in different ways facilitated the process of drug handling. To handle the drug correctly at home parents requested to be trained and informed in the beginning of their child's oral drug treatment. In addition, parents requested to be individually approached by HCP to get answers to questions and concerns. CONCLUSIONS: This educational intervention study shows promising results for the method used by HCPs to inform and educate parents on complicated topics such as handling OADs at home.
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Home hospitalization represents an alternative to traditional hospitalization, providing comparable clinical safety for hematological patients. At-home therapies can range from the delivery of intravenous antibiotics to more complex scenarios, such as the care during the early period after hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy. Early discharge from conventional hospitalization is feasible and helps reduce hospital resources and waiting lists. The coordinated efforts of multidisciplinary teams, including hematologists, nurses, and pharmacists, ensure patient safety and continuity of care. The traditional model of home hospitalization relies on home visits and telephone consultations with physicians and nurses. However, the use of eHealth technologies, such as MY-Medula, can enhance communication and monitoring, and thereby improve patient outcomes with no additional costs. The active involvement of a clinical pharmacist in home hospitalization programs is essential, not only for the proper logistical management of the medication but also to ensure its appropriateness, optimize treatment, address queries from the team and patients, and promote adherence. In conclusion, the implementation of hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy home hospitalization programs that use both an eHealth tool and a multidisciplinary care model can optimize patient care and improve quality of life without increasing healthcare costs.
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Transplante de Células-Tronco Hematopoéticas , Hospitalização , Farmacêuticos , Telemedicina , Humanos , Serviços de Assistência Domiciliar , Equipe de Assistência ao Paciente , Qualidade de VidaRESUMO
With the aim of describing the activities of nurses in mobile home palliative care teams in the Brussels Region, the study Nursing practices in palliative care in Brussels outpatient mobile teams took the cultural intermediary model as its theoretical framework. This model is based on in-depth research into the history of the nursing discipline. This article provides an overview of this European conceptual model, its integration into a descriptive study, and highlights some of its contributions.
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Cuidados Paliativos , Humanos , Cuidados Paliativos/organização & administração , Modelos de Enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da VidaRESUMO
BACKGROUND: The global population of adults aged 60 and above surpassed 1 billion in 2020, constituting 13.5% of the global populace. Projections indicate a rise to 2.1 billion by 2050. While Hospital-at-Home (HaH) programs have emerged as a promising alternative to traditional routine hospital care, showing initial benefits in metrics such as lower mortality rates, reduced readmission rates, shorter treatment durations, and improved mental and functional status among older individuals, the robustness and magnitude of these effects relative to conventional hospital settings call for further validation through a comprehensive meta-analysis. METHODS: A comprehensive literature search was executed during April-June 2023, across PubMed, MEDLINE, Embase, Web of Science, and Cumulative Index of Nursing and Allied Health Literature (CINAHL) to include both RCT and non-RCT HaH studies. Statistical analyses were conducted using Review Manager (version 5.4), with Forest plots and I2 statistics employed to detect inter-study heterogeneity. For I2 > 50%, indicative of substantial heterogeneity among the included studies, we employed the random-effects model to account for the variability. For I2 ≤ 50%, we used the fixed effects model. Subgroup analyses were conducted in patients with different health conditions, including cancer, acute medical conditions, chronic medical conditions, orthopedic issues, and medically complex conditions. RESULTS: Fifteen trials were included in this systematic review, including 7 RCTs and 8 non-RCTs. Outcome measures include mortality, readmission rates, treatment duration, functional status (measured by the Barthel index), and mental status (measured by MMSE). Results suggest that early discharge HaH is linked to decreased mortality, albeit supported by low-certainty evidence across 13 studies. It also shortens the length of treatment, corroborated by seven trials. However, its impact on readmission rates and mental status remains inconclusive, supported by nine and two trials respectively. Functional status, gauged by the Barthel index, indicated potential decline with early discharge HaH, according to four trials. Subgroup analyses reveal similar trends. CONCLUSIONS: While early discharge HaH shows promise in specific metrics like mortality and treatment duration, its utility is ambiguous in the contexts of readmission, mental status, and functional status, necessitating cautious interpretation of findings.
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Alta do Paciente , Humanos , Idoso , Readmissão do Paciente/estatística & dados numéricos , Serviços Hospitalares de Assistência Domiciliar , Idoso de 80 Anos ou maisRESUMO
INTRODUCTION: Older adults with advanced chronic diseases and palliative care needs are more exposed to polypharmacy and use of potentially inappropriate medication, which generates a high risk of adverse events and impaired quality of life. The objective of this study was to describe the frequency of potentially inappropriate medication use among older adults with palliative care needs receiving home care services after hospital discharge. METHODS: Observational cross-sectional study of pharmacy dispensing and electronic health records, of older adults in a home care system and with palliative care needs according to the screening with the NECPAL tool or the PROFUND and/or PALIAR indexes. Dispensed medications during 180 days after admission to home care were analyzed. Medications were classified as potentially inappropriate according to the LESS-CHRON criteria. RESULTS: We included 176 patients, mean age 87.4 years, 67% were women; 73% were pluripathologic patients and 22% had one chronic progressive disease. Mortality at 6 months was 73%. Median frequency of dispensed medications per patient was 9.1 (IQR = 4-9.7). The frequency of potentially inappropriate medication dispensation among patients was 87%, mainly antihypertensives, benzodiazepines and antipsychotics. CONCLUSION: This study observed that dispensation of potentially inappropriate medication among older adults with palliative care needs and home care services is very high. This emphasizes the need for effective patient-centered interventions to prevent inadequate prescription and stimulate de-prescription.
Introducción: Los adultos mayores con enfermedades crónicas avanzadas y necesidad de cuidados paliativos están más expuestos a la polifarmacia y a consumir medicación potencialmente inapropiada, la cual genera un alto riesgo de eventos adversos y alteración de la calidad de vida. El objetivo de este estudio fue describir la frecuencia de consumo de medicación potencialmente inapropiada de adultos mayores con necesidad de cuidados paliativos que ingresaron a cuidados domiciliarios luego de una hospitalización. Métodos: Estudio de corte transversal observacional de registros de dispensación e historias clínicas electrónicas, de adultos mayores en un sistema de cuidados domiciliarios y con necesidades de cuidados paliativos según el rastreo con la herramienta NECPAL, los índices PROFUND y/o PALIAR. Se analizó el consumo de fármacos durante los 180 días posteriores al ingreso a cuidados domiciliarios. Se clasificaron los fármacos como potencialmente inapropiados según criterios de LESS-CHRON. Resultados: Se incluyeron 176 pacientes, edad promedio 87.4 años, 67% mujeres; 78% eran pluripatológicos y 22% presentaban una enfermedad única crónica progresiva. La mortalidad a los 6 meses fue 73%. La mediana de consumo de fármacos por paciente fue 9.1 (RIC = 4-9.7). El 87% consumía medicación potencialmente inapropiada, principalmente antihipertensivos, benzodiacepinas y antipsicóticos. Conclusión: Este estudio observó que los adultos mayores, con necesidad de cuidados paliativos en cuidados domiciliarios, tienen un alto consumo de medicación potencialmente inapropiada. Esto refuerza la necesidad de implementar intervenciones efectivas centradas en el paciente, para prevenir la prescripción inadecuada y estimular la de-prescripción.
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Serviços de Assistência Domiciliar , Prescrição Inadequada , Cuidados Paliativos , Lista de Medicamentos Potencialmente Inapropriados , Humanos , Feminino , Masculino , Estudos Transversais , Idoso de 80 Anos ou mais , Serviços de Assistência Domiciliar/estatística & dados numéricos , Idoso , Lista de Medicamentos Potencialmente Inapropriados/estatística & dados numéricos , Prescrição Inadequada/estatística & dados numéricos , Polimedicação , Doença Crônica/tratamento farmacológicoRESUMO
OBJECTIVE: Virtual Reality (VR) has been demonstrated to be an effective option for integrating psychological interventions in different therapeutic settings. This randomized controlled interventional study aims to assess the effects of VR, compared to tablet controlled intervention, on anxiety, depression, pain, and short-term psychophysical symptoms in advanced cancer patients assisted at home. METHODS: Participants were provided with a VR headset or a tablet (TAB) for 4 days. On the first and last day, anxiety and depression were measured by Hospital Anxiety and Depression Scale and pain by Brief Pain Inventory. Before and after each VR and tablet session, symptoms were collected by the Edmonton Symptom Assessment Scale (ESAS). RESULTS: Fifty-three patients (27 VR vs. 26 TAB) completed the study. Anxiety significantly decreased in the VR group after the 4-day intervention. The analysis of ESAS showed a significant improvement in pain (p = 0.013), tiredness (p < 0.001), and anxiety (p = 0.013) for TAB group, and a significant reduction in tiredness (p < 0.001) in the VR group. CONCLUSIONS: Technological and user-friendly tools, such as VR and tablets, might be integrated with traditional psychological interventions to improve anxiety and cancer-related short-term symptoms. Further studies are needed to better consolidate the possible beneficial effects of VR.
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Ansiedade , Depressão , Neoplasias , Realidade Virtual , Humanos , Feminino , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/complicações , Ansiedade/terapia , Ansiedade/psicologia , Pessoa de Meia-Idade , Idoso , Depressão/terapia , Depressão/psicologia , Adulto , Fadiga/terapia , Serviços de Assistência Domiciliar , Dor do Câncer/terapia , Dor do Câncer/psicologiaRESUMO
INTRODUCTION: In Portugal, evidence of clinical outcomes within home-based hospitalization programs remains limited. Despite the adoption of homebased hospitalization services, it is still unclear whether these services represent an effective way to manage patients compared with inpatient hospital care. Therefore, the aim of this study was to evaluate the outcomes of home-based hospitalization compared with conventional hospitalization in a group of patients with a primary diagnosis of infectious, cardiovascular, oncological, or 'other' diseases. METHODS: An observational retrospective study using anonymized administrative data to investigate the outcomes of home-based hospitalization (n = 209) and conventional hospitalization (n = 192) for 401 Portuguese patients admitted to CUF hospitals (Tejo, Cascais, Sintra, Descobertas, and the Unidade de Hospitalização Domiciliária CUF Lisboa). Data on demographics and clinical outcomes, including Barthel index, Braden scale, Morse scale, mortality, and length of hospital stay, were collected. The statistical analysis included comparison tests and logistic regression. RESULTS: The study found no statistically significant differences between patients' admission and discharge for the Barthel index, Braden scale, and Morse scale scores, for both conventional and home-based hospitalizations. In addition, no statistically significant differences were found in the length of stay between conventional and home-based hospitalization, although patients diagnosed with infectious diseases had a longer stay than patients with other conditions. Although the mortality rate was higher in home-based hospitalization compared to conventional hospitalization, the mortality risk index (higher in home-based hospitalization) assessed at admission was a more important predictor of death than the type of hospitalization. CONCLUSION: The study found that there were no significant differences in outcomes between conventional and home-based hospitalization. Home-based hospitalization was found to be a valuable aspect of patient- and family-centered care. However, it is noteworthy that patients with infectious diseases experienced longer hospital stays.
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Hospitalização , Humanos , Masculino , Estudos Retrospectivos , Feminino , Idoso , Pessoa de Meia-Idade , Hospitalização/estatística & dados numéricos , Portugal , Idoso de 80 Anos ou mais , Tempo de Internação/estatística & dados numéricos , Serviços de Assistência Domiciliar/estatística & dados numéricos , AdultoRESUMO
BACKGROUND: Home health care (HHC) has been increasingly used to improve care transitions and avoid poor outcomes, but there is limited data on its use and efficacy following coronary artery bypass grafting. The purpose of this study was to describe HHC use and its association with outcomes among Medicare beneficiaries undergoing coronary artery bypass grafting. METHODS: Retrospective analysis of 100% of Medicare fee-for-service files identified 77â 331 beneficiaries undergoing coronary artery bypass grafting and discharged to home between July 2016 and December 2018. The primary exposure of HHC use was defined as the presence of paid HHC claims within 30 days of discharge. Hierarchical logistic regression identified predictors of HHC use and the percentage of variation in HHC use attributed to the hospital. Propensity-matched logistic regression compared mortality, readmissions, emergency department visits, and cardiac rehabilitation enrollment at 30 and 90 days after discharge between HHC users and nonusers. RESULTS: A total of 26â 751 (34.6%) of beneficiaries used HHC within 30 days of discharge, which was more common among beneficiaries who were older (72.9 versus 72.5 years), male (79.4% versus 77.4%), White (90.2% versus 89.2%), and not Medicare-Medicaid dual eligible (6.7% versus 8.8%). The median hospital-level rate of HHC use was 31.0% (interquartile range, 13.7%-54.5%) and ranged from 0% to 94.2%. Nearly 30% of the interhospital variation in HHC use was attributed to the discharging hospital (intraclass correlation coefficient, 0.296 [95% CI, 0.275-0.318]). Compared with non-HHC users, those using HHC were less likely to have a readmission or emergency department visit, were more likely to enroll in cardiac rehabilitation, and had modestly higher mortality within 30 or 90 days of discharge. CONCLUSIONS: A third of Medicare beneficiaries undergoing coronary artery bypass grafting used HHC within 30 days of discharge, with wide interhospital variation in use and mixed associations with clinical outcomes and health care utilization.
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Ponte de Artéria Coronária , Serviços de Assistência Domiciliar , Medicare , Readmissão do Paciente , Humanos , Ponte de Artéria Coronária/mortalidade , Ponte de Artéria Coronária/efeitos adversos , Estados Unidos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Resultado do Tratamento , Fatores de Tempo , Idoso de 80 Anos ou mais , Doença da Artéria Coronariana/mortalidade , Doença da Artéria Coronariana/cirurgia , Doença da Artéria Coronariana/terapia , Fatores de Risco , Alta do Paciente , Benefícios do Seguro , Reabilitação Cardíaca , Planos de Pagamento por Serviço Prestado , Bases de Dados Factuais , Serviço Hospitalar de EmergênciaRESUMO
BACKGROUND: The prescription of injectable anticipatory medications ahead of possible need for last-days-of-life symptom relief is established community practice internationally. Healthcare teams and policy makers view anticipatory medication as having a key role in optimising effective and timely symptom control. However, how these medications are subsequently administered (used) is unclear and warrants detailed investigation to inform interdisciplinary practice and guidance. OBJECTIVE: To identify the frequency, timing and recorded circumstances of the administration of injectable end-of-life anticipatory medications prescribed for patients living at home and in residential care. DESIGN: A retrospective mixed-methods observational study using general practitioner (family doctor) and community nursing held clinical records. SETTING(S): Community-based care in two English counties. PARTICIPANTS: 167 deceased adult patients (aged 18+) registered with eleven general practitioner practices and two associated community nursing services. These were patients prescribed anticipatory medications, identified from the 30 most recent deaths per practice. Patients died between 1 March 2017 and 25 September 2019, from any cause except trauma, sudden death or suicide. METHODS: Patient characteristics, anticipatory medication discussions, recorded administration contexts and decision-making, medication details, recorded symptom control and comfort at death were collected from clinical records. Data analysis combined quantitative and qualitative analyses in a mixed methods approach. RESULTS: Anticipatory medications were administered to 59.9â¯% (100/167) patients, commenced between 0 and 586â¯days before death (median 3â¯days). Their usage was similar for patients who died from cancer and non-cancer conditions. Anticipatory medications were almost universally started and titrated by visiting nurses. Eleven patients had medications started between 59â¯days and 586â¯days before death for recorded reversible non-end-of-life care conditions. Only 5â¯% (5/100) of patient records contained detailed accounts of patient participation in decisions to start medications: four were recorded as being reluctant to commence medications but agreed to trial injections to relieve symptoms. Crucially, there was recurrent under-recording of the effectiveness of injectable medications and patient comfort. CONCLUSIONS: Prescribed medications were commonly administered by visiting community nurses to help manage last-days-of-life symptoms. However, patient records infrequently referred to the effectiveness of administered medication and perceived patient comfort. Most recorded references to patient and family preferences for involvement in anticipatory medication decision-making and their experiences of care were brief and perfunctory. More detailed information should be routinely recorded in clinical records to enable assessment of the appropriate and effective use of anticipatory medicines and how inter-professional collaboration and services could be developed to provide adequate twenty-four-hour cover. TWEETABLE ABSTRACT: Effectiveness of injectable end-of-life symptom control medications and patient comfort often under-recorded @Ben_Bowers__ @PELi_Cam @TheQNI.
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Injeções , Assistência Terminal , Humanos , Estudos Retrospectivos , Idoso , Masculino , Feminino , Idoso de 80 Anos ou mais , Pessoa de Meia-Idade , AdultoRESUMO
BACKGROUND: Although family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers' unmet needs is via the design of digital technologies that support caregivers' complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. OBJECTIVE: This study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. METHODS: We conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. RESULTS: We recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians' and caregivers' perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers' already significant burdens. CONCLUSIONS: These findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.
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AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.
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Cuidados Paliativos , Humanos , Lactente , Suécia/epidemiologia , Masculino , Feminino , Adolescente , Pré-Escolar , Criança , Recém-Nascido , Cuidados Paliativos/estatística & dados numéricos , Sistema de Registros , Mortalidade HospitalarRESUMO
OBJECTIVES: Palliative patients generally prefer to be cared for and die at home. Overly aggressive treatments place additional strain on already burdened patients and healthcare services, contributing to decreased quality of life and increased healthcare costs. This study characterises palliative inpatients, quantifies in-hospital mortality and potentially avoidable hospitalisations. METHODS: We conducted a multicentre retrospective analysis using the national inpatient cohort. The extracted data encompassed all inpatients for palliative care spanning the years 2012-2021. The dataset comprised information on demographics, diagnoses, comorbidities, treatments and clinical outcomes. Content experts reviewed a list of treatments for which no hospitalisation was required. RESULTS: 120 396 hospitalisation records indicated palliative patients. Almost half were women (n=59 297, 49%). Most patients were ≥65 years old. 66% had an oncologic primary diagnosis. The majority were admitted from home (82 443; 69%). The patients stayed a median of 12 days (6-20). All treatments for 25 188 patients (21%) could have been performed at home. In-hospital deaths ended 64 739 stays (54%); of note, 10% (n=6357/64 739) of in-hospital deaths occurred within 24 hours. CONCLUSIONS: In this nationwide study of palliative inpatients, two-thirds were 65 years old and older. Regarding the performed treatments alone, a fifth of these hospitalisations can be considered as avoidable. More than half of the patients died during their hospital stay, and 1 in 10 of those within 24 hours.
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Interprofessional collaboration (IPC) is essential for high-quality palliative care (PC) for persons with dementia. The aim of this scoping review was to identify IPC approaches in palliative dementia care and explore the elements constituting these approaches. We performed a search in PubMed, CINAHL, and PsychINFO using the Joanna Briggs Institute Reviewers' manual and PRISMA guidelines, and conducted content analysis of the included articles. In total, 28 articles were included, which described 16 IPC approaches in palliative dementia care. The content analysis revealed three overall elements of these approaches: 1) collaborative themes, 2) collaborative processes, and 3) resources facilitating collaboration. Frequently reported collaborative themes embraced pain management and providing care in the dying phase. These themes were addressed through intertwined collaborative processes including communication, coordination, assessing and monitoring, and reflecting and evaluating. To ensure optimal IPC in palliative dementia care, various resources were required, such as PC knowledge, skills to manage symptoms, skills to communicate with collaborators, and a facilitating environment. In conclusion, the identified IPC approaches in palliative dementia care involve diverse collaborating professionals who mainly manage symptoms, prepare for the dying phase and require material and immaterial resources to enable optimal IPC in palliative dementia care.
Assuntos
Comportamento Cooperativo , Demência , Relações Interprofissionais , Cuidados Paliativos , Humanos , Demência/terapia , Cuidados Paliativos/organização & administração , Comunicação , Equipe de Assistência ao Paciente/organização & administração , Manejo da DorRESUMO
This study investigated the impact of home care, health status, and cognition. A qualitative and quantitative approach was employed through a cross-sectional study with a sample of 60 elderly individuals in need of home care in the municipality of Itatiba, São Paulo, Brazil. The analysis utilized the Discourse of the Collective Subject (DCS), EQ-5D, EQ VAS, and Mini-Mental State Examination (MMSE). The sample consisted of 40.0% male and 60.0% female individuals. The majority (61.6%) received weekly visits, mainly from community health agents, who were responsible for the majority of the care (45%). Positive considerations were highlighted, with 36.6% emphasizing the contribution to treatment continuity. The EQ VAS assessment indicated a moderately good perception of health. The EQ-5D analysis revealed significant differences between genders in personal care (p = 0.04). There were significant differences between clinical characteristics and EQ-5D dimensions, such as neoplasia and reduced mobility (p = 0.04), and arthritis/osteoarthritis/rheumatism and a limitation in common activities (p = 0.01). The presence of anxiety/depression was significant in cases of neoplasia (p = 0.006), arthritis/osteoarthritis/rheumatism (p = 0.01), and stroke (p = 0.04). The logistic regression analysis showed associations between usual activities and arthritis, osteoarthritis, rheumatism (p = 0.034), pain/malaise and arthritis, osteoarthritis, rheumatism (p = 0.038), and anxiety/depression and stroke (p= 0.028). The average MMSE scores (17.52) suggested a mild cognitive impairment, with no statistical differences between genders. Based on these results, it can be concluded that home care can provide a comprehensive approach and continuous assistance, emphasizing the importance of personalized care based on perceived and clinical differences.
Assuntos
Cognição , Serviços de Assistência Domiciliar , Qualidade de Vida , Humanos , Masculino , Feminino , Idoso , Serviços de Assistência Domiciliar/estatística & dados numéricos , Estudos Transversais , Idoso de 80 Anos ou mais , Brasil , Nível de Saúde , Pessoa de Meia-Idade , PercepçãoRESUMO
BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.
Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Pesquisa Qualitativa , Humanos , Cuidados Paliativos na Terminalidade da Vida/métodos , Feminino , Masculino , Pessoa de Meia-Idade , Avaliação de Sintomas/métodos , Adulto , Cuidadores/psicologia , Qualidade de VidaRESUMO
Objetivo: Analisar as práticas de cuidado desenvolvidas para atender às necessidades de saúde de homens em atenção domiciliar. Métodos: Pesquisa observacional e qualitativa, realizada com 34 cuidadores e 24 homens assistidos pelo serviço de atenção domiciliar do município de João Pessoa. A coleta de dados foi realizada por meio de um roteiro com variáveis sociodemográficas e perguntas abertas. A Análise Crítica do Discurso foi utilizada como método de análise, com destaque para os significados representacional e identificacional dos discursos. Resultados: As práticas de cuidado e necessidades de saúde foram apontadas com base na relação hegemônica entre os atores do cuidado, associação do cuidado ao processo de trabalho informal, atuação da família, da atividade corresponsabilizada, e prática da autonomia e autocuidado. Conclusão: Evidenciou-se um cuidado multifacetado e executado por diversos atores com suporte de equipes multiprofissionais de atenção domiciliar. (AU)
Objective: To analyze the care practices developed to meet the health needs of men in home care. Methods: Observational and qualitative research, carried out with 34 caregivers and 24 men assisted by the home care service in the city of João Pessoa. Data collection was performed through a script with sociodemographic variables and open questions. Critical Discourse Analysis was used as a method of analysis, with emphasis on the representational and identificational meanings of the discourses. The research was approved according to the opinion number 1.829.326. Results: Care practices and health needs were identified based on the hegemonic relationship between the care actors, association of care with the informal work process, family activities and co-responsibility activities, and the practice of autonomy and self-care. Conclusion: There was evidence of a multifaceted care performed by different subjects with the support of multidisciplinary home care teams. (AU)
Objetivo: Analizar las prácticas asistenciales desarrolladas para satisfacer las necesidades de salud de los hombres en la atención domiciliaria. Métodos: Investigación observacional y cualitativa, realizada con 34 cuidadores y 24 hombres asistidos por el servicio de atención domiciliaria en la ciudad de João Pessoa. La recolección de datos se realizó mediante un guión con variables sociodemográficas y preguntas abiertas. Se utilizó el Análisis Crítico del Discurso como método de análisis, con énfasis en los significados representativos e identificativos de los discursos. La investigación fue aprobada de acuerdo al dictamen número 1.829.326. Resultados: Se identificaron prácticas de cuidado y necesidades de salud a partir de la relación hegemónica entre los actores del cuidado, la asociación del cuidado con el proceso de trabajo informal, las actividades familiares y de corresponsabilidad, y la práctica de la autonomía y el autocuidado. Conclusión: Se evidenció una atención multifacética realizada por diferentes sujetos con el apoyo de equipos multidisciplinares de atención domiciliaria. (AU)