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1.
Pain Manag Nurs ; 25(4): 327-329, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38697888

RESUMEN

Fundamental to the quality of life is assisting patients in relieving pain including at the end of life. Compassionate, effective, evidence-based pain care for the dying improves the quality of life for patients and may reduce distress and complicated bereavement in the loved ones witnessing this death. However, efforts designed to mitigate the consequences of the opioid epidemic have seriously compromised pain care at the end of life. This has created an urgent need to focus on the barriers to relief, and solutions necessary to provide safe and effective pain and symptom management in this population. To that end, a committee of experts was convened by the American Society for Pain Management Nursing and the Hospice and Palliative Nursing Association. These experts reviewed the current literature, developed a draft position statement which underwent consecutive revisions. This statement was then endorsed by the respective organizations. Elucidation of barriers to effective pain control in advanced disease allows targeted interventions; including those related to clinical care, education, accessibility, and research. As nurses, we must continuously advocate for humane and dignified care, promoting ethical, effective pain and symptom management at the end of life for all.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Manejo del Dolor , Sociedades de Enfermería , Cuidado Terminal , Humanos , Manejo del Dolor/métodos , Manejo del Dolor/normas , Manejo del Dolor/enfermería , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Cuidado Terminal/métodos , Cuidado Terminal/normas , Estados Unidos , Calidad de Vida/psicología , Cuidados Paliativos/métodos , Cuidados Paliativos/normas
2.
BMC Palliat Care ; 21(1): 132, 2022 Jul 20.
Artículo en Inglés | MEDLINE | ID: mdl-35854375

RESUMEN

BACKGROUND: There has been a global increase in the number of people who are dying of old age. This development implies a need for good palliative care among older persons at the end of life. Here nursing homes have an important role to play. However, the principles of palliative care have not been sufficiently applied in nursing homes, and there is a need to increase the implementation of palliative care in these settings. Therefore the project named Implementation of Knowledge-Based Palliative Care in Nursing Homes (the KUPA project, to use its Swedish acronym) was started as a contribution to filling this knowledge gap. The aim of the present study was to investigate the professionals' experiences of readiness for change to knowledge-based palliative care at nursing homes after the educational intervention within the KUPA project. METHODS: The focus group method was used to interview 39 health-care professionals with the aid of semistructured questions based on the Organizational Readiness for Change theoretical framework. Six focus groups were formed at six nursing homes in two counties in southern Sweden. The groups included different types of professionals: assistant nurses, nurses, occupational therapists, physiotherapists and social workers. The analysis was conducted with an abductive approach and included deductive and inductive content analysis. RESULTS: The analysis revealed one overarching theme: hopeful readiness for change in palliative care despite remaining barriers. The main categories were increased knowledge facilitating development, enhanced team spirit, uncertainty about future plans connected with hopeful readiness and remaining organizational barriers. CONCLUSIONS: This study adds knowledge and understanding concerning professionals' readiness for change palliative care in nursing homes and shows how ready nursing home settings undertake these changes in practice. The Organizational Readiness for Change theory proved suitable for application in nursing homes to assess the professionals' experiences and to evaluate educational interventions regardless of the organization's readiness for change. TRIAL REGISTRATION: ClinicalTrials NCT02708498 , first registration 15/03/2016.


Asunto(s)
Actitud del Personal de Salud , Personal de Salud , Enfermería de Cuidados Paliativos al Final de la Vida , Casas de Salud , Anciano , Anciano de 80 o más Años , Grupos Focales , Estudios de Seguimiento , Personal de Salud/educación , Personal de Salud/psicología , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/organización & administración , Humanos , Casas de Salud/organización & administración , Investigación Cualitativa , Suecia
3.
Support Care Cancer ; 28(5): 2145-2155, 2020 May.
Artículo en Inglés | MEDLINE | ID: mdl-31410598

RESUMEN

BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials. OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT). METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve. RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item 'overall satisfaction with the help received from the health care system' with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05). CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group. TRIAL REGISTRATION: NCT01348048.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Neoplasias/terapia , Cuidados Paliativos/métodos , Anciano , Anciano de 80 o más Años , Dinamarca , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente/estadística & datos numéricos , Calidad de Vida/psicología , Encuestas y Cuestionarios
4.
Support Care Cancer ; 28(12): 5995-6010, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-32285263

RESUMEN

PURPOSE: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. METHODS: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. RESULTS: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer. CONCLUSIONS: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.


Asunto(s)
Directivas Anticipadas/estadística & datos numéricos , Neoplasias Colorrectales/terapia , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Planificación Anticipada de Atención , Cuidadores , Estudios de Cohortes , Neoplasias Colorrectales/patología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Calidad de Vida/psicología , Encuestas y Cuestionarios
5.
Palliat Med ; 34(2): 179-194, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31659939

RESUMEN

BACKGROUND: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures. AIM: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs. DESIGN: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life. DATA SOURCES: Eight citation databases and three trial registries were searched to June 2018. RESULTS: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain. CONCLUSIONS: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care.


Asunto(s)
Aromaterapia/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Masaje/métodos , Terapias Mente-Cuerpo/métodos , Manipulaciones Musculoesqueléticas/métodos , Cuidados Paliativos/métodos , Calidad de Vida/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad
6.
Palliat Med ; 34(2): 209-218, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31659940

RESUMEN

BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. DESIGN: A constructivist qualitative grounded theory study was conducted. SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward. CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Neoplasias/psicología , Enfermeras Clínicas/psicología , Enfermería Oncológica/métodos , Cuidados Paliativos/psicología , Calidad de Vida/psicología , Derivación y Consulta , Adulto , Actitud del Personal de Salud , Femenino , Teoría Fundamentada , Humanos , Masculino , Persona de Mediana Edad , Ontario , Investigación Cualitativa
7.
Palliat Med ; 34(9): 1220-1227, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32736486

RESUMEN

BACKGROUND: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams. AIM: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care. DESIGN: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes. SETTING/PARTICIPANTS: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital. RESULTS: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study.Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues. CONCLUSION: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families.


Asunto(s)
Infecciones por Coronavirus/terapia , Personal de Salud/educación , Enfermería de Cuidados Paliativos al Final de la Vida/educación , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Infectología/educación , Infectología/normas , Neumonía Viral/terapia , Guías de Práctica Clínica como Asunto , Adulto , Betacoronavirus , COVID-19 , Femenino , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Humanos , Infectología/métodos , Infectología/estadística & datos numéricos , Italia/epidemiología , Masculino , Persona de Mediana Edad , Pandemias , Investigación Cualitativa , SARS-CoV-2
8.
J Clin Nurs ; 29(15-16): 2979-2990, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-32320512

RESUMEN

AIMS AND OBJECTIVES: To examine nurses' experiences of working with issues of sexuality in palliative care. BACKGROUND: Sexuality has value for human lives and relations and is important for one's overall well-being throughout life. Guidelines for palliative care state that sexuality should be addressed. Previous research shows that the inclusion of sexuality in general health care is deficient, and there is a knowledge gap on how sexuality is addressed in palliative care. METHOD: Within a qualitative design, the empirical material was obtained through three focus group interviews with eleven registered nurses working in palliative care. The interviews were analysed using qualitative content analysis. RESULT: Nurses experience that sexuality has an indistinct place in their work, "sexuality" is a word difficult to use, and differing views are held on whether it is relevant to address sexuality, and if so, when? Although they have experiences involving patient and partner sexuality, which is viewed as sexuality in transformation during the palliative care process, nurses seldom explicitly address patient or partner sexuality. Despite the lack of knowledge, routines and organisational support, they acknowledge the importance of addressing sexuality in palliative care, as they express that they want to do right. CONCLUSION: Overall, nurses appear to follow differing cultural, interpersonal and intrapsychic scripts on sexuality rather than knowledge-based guidelines. This underlines the importance of managers who safeguard the adherence to existing palliative care guidelines where sexuality is already included. In this work, it is important to be aware of norms to avoid excluding patients and partners that differ from the nurses themselves as well as from societal norms on sexuality. RELEVANCE TO CLINICAL PRACTICES: The results can be used as a point of departure when implementing existing or new guidelines to include and address sexuality and sexual health needs in palliative care.


Asunto(s)
Actitud del Personal de Salud , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/organización & administración , Conducta Sexual , Adulto , Femenino , Grupos Focales , Humanos , Masculino , Investigación Cualitativa
9.
J Clin Nurs ; 29(9-10): 1643-1652, 2020 May.
Artículo en Inglés | MEDLINE | ID: mdl-32129521

RESUMEN

AIM AND OBJECTIVES: To explore the experiences and views of nurses who provide nonpharmacological therapies for chronic pain management in palliative care. BACKGROUND: Nursing expertise in palliative care is essential in providing pain relief to patients with chronic diseases. Examinations of the use of nonpharmacological therapies for chronic pain management in palliative care have revealed what nonpharmacological therapies have been used, but there is insufficient knowledge regarding nurses' attitudes, views and experiences regarding pain therapies in this context. DESIGN: A qualitative descriptive design was chosen. METHODS: Data were collected through individual interviews in a purposive sample with 15 nurses to ensure maximum variation. The data were analysed using qualitative content analysis. This study aligns with the consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The analysis yielded four categories, as follows: "building and sustaining favourable therapeutic relationships" involved the creation of trust and a solid relationship; in "recognising the diversity of patients' needs," person-centred care is expressed as being vital for individualised nonpharmacological pain management; "incorporating significant others" describes how nurses can help to ease the patient's pain by identifying positive encounters with family members or friends; and in "recognising the existence of barriers," nurses highlight vulnerable groups such as children, for whom nurses require special education to enable optimal nonpharmacological pain management. CONCLUSION: The unique knowledge that nurses gain about the patient through the nurse-patient relationship is central and crucial for successful nonpharmacological pain management. RELEVANCE TO CLINICAL PRACTICE: This study emphasises the need for nurses to get to know their patient and to be open and sensitive to patients' descriptions of their unique life situations, as this provides the necessary knowledge for optimal care and pain management. Nurses should be encouraged and given the opportunity to attend specialised training in palliative care and pain management.


Asunto(s)
Dolor Crónico/enfermería , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Manejo del Dolor/enfermería , Cuidados Paliativos/métodos , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Enfermero-Paciente , Investigación Cualitativa
10.
Br J Community Nurs ; 25(7): 346-352, 2020 Jul 02.
Artículo en Inglés | MEDLINE | ID: mdl-32614673

RESUMEN

Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.


Asunto(s)
Delirio/enfermería , Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Enfermo Terminal , Femenino , Humanos , Investigación Cualitativa , Escocia
11.
J Christ Nurs ; 37(2): 88-93, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32149908

RESUMEN

This research study aimed to describe preferences about factors related to receiving information regarding medical treatments and palliative care (PC) options for adult patients with a poor prognosis and/or their primary decision maker. A single-group descriptive study design and content analysis were utilized. Seven trained registered nurse (RN) study team members conducted interviews to obtain narrative data. All study participants preferred to learn PC services earlier in the illness trajectory and desired to learn about this service from nurses. Most reported a desire to have spouses and family involved in decisions about PC. Nearly all wanted to understand PC options ahead of time should treatment not go as planned.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Educación del Paciente como Asunto/métodos , Participación del Paciente/psicología , Adulto , Anciano , Cristianismo , Toma de Decisiones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente/estadística & datos numéricos , Investigación Cualitativa
12.
Support Care Cancer ; 27(7): 2425-2434, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-30357555

RESUMEN

PURPOSE: Early palliative care (EPC) has shown a positive impact on quality of life (QoL), quality of care, and healthcare costs. We evaluated such effects in patients with advanced gastric cancer. METHODS: In this prospective, multicenter study, 186 advanced gastric cancer patients were randomized 1:1 to receive standard cancer care (SCC) plus on-demand EPC (standard arm) or SCC plus systematic EPC (interventional arm). Primary outcome was a change in QoL between randomization (T0) and T1 (12 weeks after T0) in the Trial Outcome Index (TOI) scores evaluated through the Functional Assessment of Cancer Therapy-Gastric questionnaire. Secondary outcomes were patient mood, overall survival, and family satisfaction with healthcare and care aggressiveness. RESULTS: The mean change in TOI scores from T0 to T1 was - 1.30 (standard deviation (SD) 20.01) for standard arm patients and 1.65 (SD 22.38) for the interventional group, with a difference of 2.95 (95% CI - 4.43 to 10.32) (p = 0.430). The change in mean Gastric Cancer Subscale values for the standard arm was 0.91 (SD 14.14) and 3.19 (SD 15.25) for the interventional group, with a difference of 2.29 (95% CI - 2.80 to 7.38) (p = 0.375). Forty-three percent of patients in the standard arm received EPC. CONCLUSIONS: Our results indicated a slight, albeit not significant, benefit from EPC. Findings on EPC studies may be underestimated in the event of suboptimally managed issues: type of intervention, shared decision-making process between oncologists and PC physicians, risk of standard arm contamination, study duration, timeliness of assessment of primary outcomes, timeliness of cohort inception, and recruitment of patients with a significant symptom burden. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (NCT01996540).


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Calidad de Vida/psicología , Neoplasias Gástricas/terapia , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias Gástricas/patología
13.
Support Care Cancer ; 27(9): 3311-3319, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30617431

RESUMEN

PURPOSE: Life review therapy combined with memory specificity training (LRT-MST) is effective in cancer patients in palliative care, but the effect size is moderate. The aim of this qualitative study was to obtain more in-depth knowledge on motivation to start with LRT-MST, experiences with LRT-MST, and perceived outcomes of LRT-MST. METHODS: Semi-structured interviews were conducted with 20 cancer patients in palliative care who participated in a randomized controlled trial investigating the effect of LRT-MST. All interviews were digitally recorded and transcribed verbatim. Data were analyzed by means of thematic analysis independently by two coders and coded into key issues and themes. RESULTS: Patients started LRT-MST for intrinsic (e.g., potential benefit for personal well-being) and extrinsic reasons (e.g., potential benefit for future patients). Patients indicated mainly positive experiences with the intervention. They appreciated sharing their memories and regaining memories with a specific focus on retrieving positive memories. Some disliked the fact that negative memories could not be addressed. Most patients perceived positive outcomes of the intervention belonging to the overarching themes "ego-integrity" and "psychological well-being" in the here and now, as well as in the nearby future (including end-of-life). CONCLUSIONS: LRT-MST is of added value as a psychological intervention in palliative care. This study provided in-depth insight into reasons to start the intervention, and the experiences and outcomes, which are important to further tailor LRT-MST and for development or improvement of other psychological interventions targeting cancer patients in palliative care.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Memoria Episódica , Neoplasias/psicología , Cuidados Paliativos/psicología , Calidad de Vida/psicología , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Motivación , Neoplasias/terapia , Satisfacción Personal , Investigación Cualitativa , Sensibilidad y Especificidad
14.
Support Care Cancer ; 27(9): 3291-3300, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30612238

RESUMEN

PURPOSE: The aim of this paper is to describe a model of palliative rehabilitation for newly diagnosed advanced cancer patients and present data on how it was utilised during a randomised controlled trial (RCT). METHODS: We designed a highly flexible, multidisciplinary model of palliative rehabilitation consisting of a "basic offer" and tailored elements. The model was evaluated in the setting on an RCT investigating the effect of systematic referral to a palliative rehabilitation clinic concurrently with standard oncology treatment or standard treatment alone. The basic offer of palliative rehabilitation was two consultations and a 12-week possibility of contacting a palliative rehabilitation team, if needed. In addition, patients and family caregivers could be offered participation in a 12-week patient/caregiver school combined with individually tailored physical exercise in groups, individual consultations, or both. Contacts with the palliative rehabilitation team and participant evaluation were registered prospectively. RESULTS: Between December 2014 and December 2017, 132 adults with newly diagnosed advanced cancer were seen in the palliative rehabilitation outpatient clinic. Twenty percent of the participants received the basic offer only (n = 26), 45% additionally participated in the group program (n = 59), and 35% received supplementary individual consultations without participating in the group program (n = 47). The intervention was primarily led by nurses, and the main themes of the individual consultations were coping, pain, and nutrition. When asked if they would recommend the intervention to others in the same situation, 93% of the respondents agreed, 7% partly agreed, and no one disagreed. CONCLUSION: The new model of palliative rehabilitation presented here had a flexibility to meet the needs of the participants and led to a very high degree of patient satisfaction. It could serve as an inspiration to other cancer centres wanting to integrate palliative care into standard oncology services.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Neoplasias/terapia , Cuidados Paliativos/métodos , Satisfacción del Paciente/estadística & datos numéricos , Calidad de Vida/psicología , Adaptación Psicológica , Adolescente , Adulto , Cuidadores , Femenino , Humanos , Masculino , Oncología Médica/métodos , Persona de Mediana Edad , Derivación y Consulta , Adulto Joven
15.
Support Care Cancer ; 27(9): 3321-3330, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30613908

RESUMEN

PURPOSE: Providing specialized palliative care support to elderly patients in rural areas can be challenging. The purpose of this study was to gain a preliminary understanding of the experience of using mobile web-based videoconferencing (WBVC) for conducting in-home palliative care consults with elderly rural patients with life-limiting illness. METHODS: This was a descriptive, exploratory, proof-of-concept study with a convenience sample of 10 WBVC visits. A palliative care clinical nurse specialist (PC-CNS), in the home with the patient/family and home care nurse (HC-N), used a laptop computer with webcam and speakerphone to connect to a distant palliative care physician consultant (PC-MD) over a secure Internet connection. Data was collected using questionnaires, interviews, and focus groups. RESULTS: Analysis of qualitative data revealed four themes: communication, logistics, technical issues, and trust. Participants reported they were comfortable discussing concerns by WBVC and felt it was an acceptable and convenient way to address needs. Audiovisual quality was not ideal but was adequate for communication. Use of WBVC improved access and saved time and travel. Fears were expressed about lack of security of information transmitted over the Internet. CONCLUSIONS: Using WBVC for in-home palliative care consults could be an acceptable, effective, feasible, and efficient way to provide timely support to elderly rural patients and their families. Having a health care provider in the home during the WBVC is beneficial. WBVC visits have advantages over telephone calls, but limitations compared to in-person visits, suggesting they be an alternative but not replacement for in-person consultations.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Población Rural/estadística & datos numéricos , Comunicación por Videoconferencia , Anciano , Comunicación , Femenino , Humanos , Internet , Masculino , Derivación y Consulta , Encuestas y Cuestionarios , Viaje
16.
Support Care Cancer ; 27(4): 1263-1270, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30467792

RESUMEN

PURPOSE: Veterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer. METHODS: From August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18). RESULTS: Thematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care. CONCLUSIONS: While concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.


Asunto(s)
Vías Clínicas/organización & administración , Cuidados Paliativos al Final de la Vida/organización & administración , Neoplasias/terapia , Cuidados Paliativos/organización & administración , United States Department of Veterans Affairs/organización & administración , Veteranos , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/organización & administración , Hospitales para Enfermos Terminales , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/epidemiología , Neoplasias/patología , Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos/métodos , Investigación Cualitativa , Estudios Retrospectivos , Estados Unidos/epidemiología , Veteranos/estadística & datos numéricos
17.
Palliat Med ; 33(6): 578-588, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30747052

RESUMEN

BACKGROUND: Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care. AIMS: To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations. DESIGN: We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records. SETTING/PARTICIPANTS: In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed. RESULTS: Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients' individual needs; and aiming to use the lowest possible dosages for patients to be 'comfortable', 'calm' or 'relaxed'. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records' review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4-69.5 mg/24 h). CONCLUSION: Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.


Asunto(s)
Actitud del Personal de Salud , Personal de Salud/psicología , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Hipnóticos y Sedantes/uso terapéutico , Midazolam/uso terapéutico , Cuidados Paliativos/métodos , Cuidado Terminal/métodos , Adulto , Toma de Decisiones , Femenino , Grupos Focales , Humanos , Londres , Estudios Longitudinales , Masculino , Persona de Mediana Edad
18.
J Clin Nurs ; 28(19-20): 3680-3690, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-31216390

RESUMEN

AIMS AND OBJECTIVES: To explore how community nurses experience the collaboration with general practitioners and specialist palliative home care team nurses in palliative home care and the perceived factors influencing this collaboration. BACKGROUND: The complexity of, and the demand for, palliative home care is increasing. Primary palliative care is provided by community nurses and general practitioners, often in collaboration with palliative home care team nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively. DESIGN AND METHODS: A qualitative research design, using semi-structured interviews with community nurses. Participant selection happened through regional palliative care networks in Belgium. The network's palliative home care team nurses selected community nurses with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. Consolidated criteria for reporting qualitative research guidelines were followed. RESULTS: Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the general practitioners' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with general practitioners and determined palliative home care team nurses' involvement. The coping strategies of community nurses balanced between a behaviour focused to the patient and to the professional relationship. Specialist palliative home care team nurses were relied upon for their expertise but also to mediate when community nurses disagreed with general practitioners. CONCLUSION: Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50 years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration. RELEVANCE TO CLINICAL PRACTICE: The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional well-being and workplace learning.


Asunto(s)
Relaciones Interprofesionales , Cuidados Paliativos , Relaciones Médico-Enfermero , Bélgica , Enfermería en Salud Comunitaria/métodos , Femenino , Medicina General/métodos , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Humanos , Masculino , Investigación Cualitativa
19.
J Clin Nurs ; 28(9-10): 1633-1642, 2019 May.
Artículo en Inglés | MEDLINE | ID: mdl-30589144

RESUMEN

AIMS AND OBJECTIVES: To determine the relevance of nursing's professional dignity in palliative care. BACKGROUND: Dignity is a valued concept in the ethical discourse of health disciplines. Nursing's professional dignity, a concept related to professional identity, is not clearly defined nor have its characteristics been delineated for its clinical relevance in palliative care. DESIGN: A qualitative methodological approach. METHODS: Focus groups elicited dialogues of nursing's professional dignity among 69 nurses working in hospices and home-care in Italy. Data were content-analysed via an inductive process. The COREQ checklist for qualitative studies was used for reporting this research. RESULTS: A central theme related to (a) "Intrinsic dignity of persons" was embedded in the essence of palliative care. Several corollary themes underscored this central theme: (b) Professional (intra- and inter) relationships and teamwork; (c) Nursing professionalism; (d) Ethical dilemmas; and (e) Relationships with patients and their significant persons. CONCLUSIONS: Nurses valued the essence of respect as persons and the essence of respect for their work as coherent with intrinsic dignity and work dignity in palliative care. Nurses perceived their psycho-social relationships with patients and their families as rewarding incentives amidst disputatious interactions with peers and/or other healthcare professionals. They experienced ethical dilemmas, which they perceived as inherent in palliative care. RELEVANCE TO CLINICAL PRACTICE: Study findings corroborate the literature regarding the concept of nursing's professional dignity which is intrinsic in respect of the human person. The intrinsic dignity in palliative care manifests as nurses are working in juxtaposition of a demanding yet rewarding care ambience.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Respeto , Femenino , Grupos Focales , Humanos , Relaciones Interprofesionales , Italia , Masculino , Relaciones Enfermero-Paciente , Investigación Cualitativa
20.
J Clin Nurs ; 28(21-22): 3966-3976, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31328336

RESUMEN

AIMS AND OBJECTIVES: To explore the advantages and disadvantages of using video consultations, as experienced by specialised palliative care healthcare professionals, who are involved in palliative care at home. BACKGROUND: One challenge in the work of specialised palliative care teams is the substantial resources used in terms of time and transport to and from the patient's home. Video consultations may be a solution for real-time specialised palliative home care. DESIGNS: Hermeneutic, postphenomenology. METHODS: An explorative qualitative study utilising data from field notes of an autobiographical diary, participant observations and semi-structured interviews with healthcare professionals. The COREQ guideline was used for reporting the study. See Appendix S1. The data collection took place in patients' homes and at the Department of Oncology, Odense University Hospital, Denmark. RESULTS: Eight participants (n = 8); five community nurses; and three specialised palliative care team members-a head physician, a physiotherapist and a nurse-participated in the study. The healthcare professionals' knowledge was based on n = 82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialised palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present. CONCLUSIONS: Video consultations in specialised palliative home care are feasible, and the technology can facilitate multidisciplinary participation and co-operation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialised palliative home care. RELEVANCE TO CLINICAL PRACTICE: The use of video consultations can provide direct specialised palliative care over distance involving healthcare professionals, patients and their relatives.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Consulta Remota/métodos , Adulto , Actitud del Personal de Salud , Dinamarca , Femenino , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Consulta Remota/estadística & datos numéricos
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