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1.
Scand J Public Health ; : 14034948241232461, 2024 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-38443360

RESUMO

AIMS: Based on selected themes from a national survey, the study aims to describe and analyse similarities and differences in community-based palliative care provided to people living at home in two different care settings - the nursing home setting and the home care setting. METHODS: Responses from four palliative care themes covered by a national survey sent to 717 managers in municipality-based care units were used. The themes were: (a) target groups in palliative care; (b) wishes for end-of-life care; (c) tools/guidelines in palliative care; and (d) palliative care provided to relatives. RESULTS: The response rates were 53% in the nursing home setting and 69% in the home care setting (69%). Both settings had target groups for palliative care, in which significantly more units in the home care settings cared for people with other cultural backgrounds or children. Wishes for end-of-life care were addressed by more than 90% of the units in both settings. There were significantly more nursing home units that addressed questions regarding resuscitation, decision making when you are incapable of making decisions for yourself, and the level of medication. In both settings, around half of the units did not use or did not know if they used tools/guidelines to identify palliative care needs. Half of home care and 65% of nursing home settings did not/were unaware of providing palliative care to relatives. CONCLUSIONS: Both settings serve target populations for palliative care with few differences. Identifying palliative care needs seemed to be a low priority in both settings. A difference was found between the settings regarding end-of-life care questions and palliative care promotion to relatives.

2.
J Clin Nurs ; 33(1): 137-148, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37222026

RESUMO

AIM AND OBJECTIVES: To explore challenges in everyday life for people with long-term cognitive effects of COVID-19 and whether a rehabilitation programme contributed to the remedy thereof. BACKGROUND: Healthcare systems around the world need knowledge about acute COVID-19 treatment, long-term effects exerting an impact on peoples' everyday lives, and how to remedy these. DESIGN: This is a qualitative study with a phenomenological approach. METHODS: Twelve people with long-term cognitive effects of COVID-19 participated in a multidisciplinary rehabilitation programme. Individual semi-structured interviews were made. Data were analysed thematically. RESULTS: Three themes and eight sub-themes emerged with respect to everyday life challenges and experiences of the rehabilitation programme. The themes were (1) Personal insight and knowledge, (2) Changed daily routines at home and (3) Coping with working life. CONCLUSION: Participants experienced long-term effects of COVID-19 as cognitive challenges, fatigue and headaches, which affected their everyday lives, that is inability to overcome daily tasks at home and at work, maintaining family roles and relations with relatives. The rehabilitation programme contributed to a vocabulary and insights related to the long-term effects of COVID-19 and the experience of being a different person. The programme contributed to changes in daily routines, organising breaks in everyday life and explaining challenges to family/relatives and the way in which they affected daily routines and their role in the family. In addition, the programme supported several of the participants in finding the right workload and working hours. RELEVANCE TO CLINICAL PRACTICE: We recommend multidisciplinary rehabilitation programmes inspired by cognitive remediation of long-term COVID-19 cognitive effects. Municipalities and organisations could collaborate in the development and completion of such programmes, possibly comprising both virtual and physical elements. This could facilitate access and reduce costs. PATIENT OR PUBLIC CONTRIBUTION: Patients contributed to the conduct of the study by participating in the data collection via interviews. CLINICAL TRIAL REGISTRATION NUMBER: Data collection and processing of data are approved by the Region of Southern Denmark (journal number: 20/46585).


Assuntos
Tratamento Farmacológico da COVID-19 , COVID-19 , Humanos , Pesquisa Qualitativa , Coleta de Dados , Cognição
3.
Palliat Support Care ; : 1-14, 2024 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-39390769

RESUMO

OBJECTIVES: Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death. METHODS: A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013-December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults. RESULTS: This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence. SIGNIFICANCE OF RESULTS: The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

4.
Omega (Westport) ; : 302228241264876, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39046069

RESUMO

People who suffer from advanced cancer may experience a loss of ability to participate in everyday life and meaningful activities, challenging their sense of identity and social relations. Social support in patient-to-patient interactions and the sharing of experiences with people in similar situations may help alleviate distress. This article is based on an ethnographic field study carried out in relation to three residential narrative courses, which included 36 persons with advanced cancer. In this study, we aimed to explore whether the courses were perceived as significant by the participants and, if so, in what ways. The field work included 185 hr of observations, six focus group interviews and nine individual interviews. The data were analyzed using an abductive thematic approach. Our findings indicate that the residential courses were generally experienced as meaningful and that in particular the setting, the community, and gaining hope were experienced as significant.

5.
Scand J Caring Sci ; 37(4): 917-926, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35072276

RESUMO

BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHODS: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULTS: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.


Assuntos
Serviços de Assistência Domiciliar , Neoplasias , Assistência Terminal , Criança , Humanos , Pais , Neoplasias/terapia , Morte
6.
BMC Palliat Care ; 21(1): 41, 2022 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-35331207

RESUMO

BACKGROUND: Early identification of patients who require palliative and supportive care at the general palliative care level is challenging. The Supportive & Palliative Care Indicators Tool (SPICT™) might provide a helpful framework for this process. AIM: To translate, culturally adapt and content validate SPICT™-DK in hospital, primary care, and general practice and within the broader Danish health care context. METHODS: SPICT™-DK was translated and cross-culturally validated by using the TRAPD-model (Translation, Review, adjudication, pretesting, and documentation) as well as the EORTC- translation guide (European Organisation for Research and Treatment of Cancer). In the pre-(pilot) testing phase, six focus group interviews and five individual interviews were conducted involving n = 29 health care professionals from general practice, primary care, and hospital. The qualitative data were analyzed through thematic analysis and the SPICT™-DK was then revised and published. RESULTS: The interviews revealed that SPICT™-DK can be used to identify people with palliative care needs. Three themes were derived from the analysis and showed SPICT™-DK provides a linguistic framework but must be used as an interdisciplinary tool as that SPICT™-DK requires competencies and collaboration. CONCLUSION: SPICT™-DK is now translated and culturally validated in a Danish healthcare setting. The tool is useful to identify people with palliative care needs but must be implemented as an interdisciplinary collaborative intervention. SPICT™ -DK cannot be used by all healthcare professionals as it requires disease-specific competencies. However, it provides a common language for early palliative care interventions which can form the basis for interdisciplinary planning of future treatment and care.


Assuntos
Idioma , Cuidados Paliativos , Comparação Transcultural , Atenção à Saúde , Dinamarca , Humanos , Inquéritos e Questionários
7.
J Fam Nurs ; 28(1): 31-42, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34551643

RESUMO

The aim of this study was to investigate current nursing practice related to end-of-life discussions with incurable lung cancer patients and their family caregivers from the perspectives of patients, family caregivers, and nurses in an oncology outpatient clinic. This phenomenological hermeneutic study included nine patients, eight family caregivers, and 11 nurses. Data were collected using participant observation, informal and semi-structured individual or joint interviews with patients and family caregivers, and focus group interviews with nurses. A Ricoeur-inspired approach was used to analyze the data. Three themes were identified: (a) content of end-of-life discussions, (b) timing of end-of-life discussions, and (c) challenges in end-of-life discussions. End-of-life discussions were seldom initiated; when they were, it was often too late. Discussions addressed treatment, place of care, practical/economic concerns, and existential matters. The physical environment at the outpatient clinic, lack of continuity, and nurses' instrumental task workloads and time pressure posed challenges to initiating end-of-life discussions.


Assuntos
Cuidadores , Assistência Terminal , Atitude do Pessoal de Saúde , Morte , Hermenêutica , Humanos , Cuidados Paliativos
8.
Omega (Westport) ; : 302228211058307, 2022 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-35000465

RESUMO

The study's aim is to explore the experiences of people with advanced cancer and professionals participating in a program with focus on rehabilitation and palliative care. The study is based on two adjusted rehabilitation programs for 33 people with advanced cancer and 12 professionals. An observational study was conducted among the participants and two focus group interviews with 10 professionals. The analytic themes were "Lightness and happiness to gain control in everyday life," "Community and closeness," and "Training as a happiness and changing agent." The activities had to support physical functions and everyday activities promoting body identity and well-being as well as emotions like closeness, lightness, and happiness in groups with like-minded people and at home with a partner and other family members. These activities and theory of emotions and body can expand the understanding of palliative care and rehabilitation as separated or integrated perspectives theoretical and in practice.

9.
Omega (Westport) ; : 302228221111933, 2022 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-35786059

RESUMO

This study explores care experiences while utilising palliative care services of non-western migrant families from the perspectives of patients, family caregivers, and healthcare professionals in Denmark. Twenty-three semi-structured individual and group interviews were conducted among eight patients with a life-threatening disease, 11 family caregivers, and ten healthcare professionals. Thematic analysis revealed three themes: 1) Communication between families and healthcare professionals; 2) Building and lack of trusting relations, and feeling safe, and 3) Access to information and navigating in the healthcare system. Moreover, ''language and culture'' emerged as transaction themes that are not mutually exclusive, however, interconnect across the mentioned three themes. Non-western migrant families can be supported by healthcare professionals' cultural competency training, negotiating on providing services concerning information, patient preferences, family involvement, and palliative care setting. This study findings urge inter-sectoral collaboration to ensure needs-oriented and linguistically and culturally appropriate palliative care services for non-western migrant families in Denmark.

10.
BMC Palliat Care ; 20(1): 37, 2021 Feb 26.
Artigo em Inglês | MEDLINE | ID: mdl-33637063

RESUMO

BACKGROUND: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients' quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers' treatment expectations. METHODS: A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients' treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy - General questionnaire. Family caregivers' treatment expectations were assessed once. RESULTS: A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04). CONCLUSION: This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Cuidadores , Humanos , Estudos Longitudinais , Neoplasias Pulmonares/tratamento farmacológico , Motivação , Cuidados Paliativos , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários
11.
BMC Palliat Care ; 20(1): 33, 2021 Feb 18.
Artigo em Inglês | MEDLINE | ID: mdl-33602200

RESUMO

BACKGROUND: Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting. METHOD: The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model. RESULTS: In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors. CONCLUSION: Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Assistência Ambulatorial , Humanos , Pacientes Ambulatoriais , Qualidade de Vida
12.
Scand J Caring Sci ; 34(2): 305-313, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31250938

RESUMO

BACKGROUND: International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved. AIM: To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved. DESIGN: A qualitative interview study, using thematic content analysis and inspired by organisational theory. SETTING/PARTICIPANTS: Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews. RESULTS: The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration. CONCLUSION: Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.


Assuntos
Comportamento Cooperativo , Pessoal de Saúde/psicologia , Cuidados Paliativos , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa
13.
Palliat Support Care ; 18(3): 346-358, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31280735

RESUMO

OBJECTIVE: South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers. METHODS: A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data. RESULTS: A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families. SIGNIFICANCE OF RESULTS: Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.


Assuntos
Cuidados Paliativos/métodos , Migrantes , Sudeste Asiático/etnologia , Povo Asiático/etnologia , Competência Cultural , Humanos , Cuidados Paliativos/tendências
14.
J Med Internet Res ; 21(3): e10208, 2019 03 21.
Artigo em Inglês | MEDLINE | ID: mdl-30896436

RESUMO

BACKGROUND: The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals. OBJECTIVE: Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home. METHODS: This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology. RESULTS: A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions. CONCLUSIONS: Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.


Assuntos
Serviços de Assistência Domiciliar/normas , Cuidados Paliativos/métodos , Encaminhamento e Consulta/normas , Telemedicina/métodos , Gravação em Vídeo/métodos , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
15.
Scand J Pain ; 24(1)2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38776518

RESUMO

OBJECTIVES: The aim of this study was to gain qualitative insight into cancer patients' experiences, explanations, and management strategies regarding their cancer-related pain (CP). METHODS: Seventeen patients with CP were interviewed using a semi-structured interview approach. Braun and Clarke's thematic analysis method was used to analyze the transcribed interviews. The patients all participated in cancer rehabilitation courses arranged by the research clinic at The Danish Knowledge Centre for Rehabilitation and Palliative Care. RESULTS: Three themes were identified: (1) Explaining CP: Patients found it difficult to explain how they experienced their pain. They lacked words, and they frequently used invasive metaphors such as "Pain feels like a heart attack" (2). Strategies and barriers to the management of CP: Initiatives provided by healthcare professionals (HCPs) were perceived as insufficient, and the patients missed guidance in both pharmacological and non-pharmacological approaches to pain management. Several saw medicine as unnatural for their body, and they focused on side effects and the medicine affecting their quality of life. (3) Responsibility for managing CP: A lack of responsiveness from the HCPs and taking on responsibility for pain management were experienced by several of the patients. The patients expressed uncertainty about whom to contact for help with the management of their CP. CONCLUSION: The patients' difficulties in explaining, understanding, and communicating their pain and pain management contributed to insufficient pain management. They were also uncertain about who had the responsibility to help them to achieve pain relief. These results share the evidence drawn from studies on patients with chronic non-cancer pain. This qualitative study highlights the need for having more focus on a common language and shared understanding between patients and HCPs. It also underpins the importance of HCPs to assume their responsibility to help patients manage their pain conditions.


Assuntos
Dor do Câncer , Manejo da Dor , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Dor do Câncer/terapia , Dor do Câncer/psicologia , Pessoa de Meia-Idade , Manejo da Dor/métodos , Idoso , Adulto , Comunicação , Neoplasias/complicações , Neoplasias/psicologia , Dinamarca , Relações Profissional-Paciente
16.
J Clin Med ; 13(20)2024 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-39458150

RESUMO

Background: Chronic obstructive pulmonary disease (COPD) is marked by severe physical symptoms, impaired quality of life, and high psychological distress. Despite its impact, the identification of not only physical but also psychosocial and existential issues in the clinic lags behind that of other patient groups. Methods: This study aimed to assess physical, psychosocial, and existential issues among patients with COPD using a patient-reported outcome measure for general palliative care (the 'PRO-Pall') in a Danish outpatient clinic. We included 115 adults with COPD who completed the PRO-Pall either electronically or in the clinic. Sociodemographic and illness-related data were retrieved from their electronic health records. Results: We found that shortness of breath, tiredness, and difficulty walking were predominant physical issues. Worry about change in social roles was the most frequently reported psychosocial issue, while existential issues were reported by approximately one in ten patients. Most patients (44.5%) felt able to share their feelings with family or friends, and a majority (62.2%) felt their illness-related issues were addressed satisfactorily. Females expressed a greater need for rest and males more frequently reported intimacy issues. Higher COPD-impact on life measured by the COPD Assessment Test was associated with lower ratings on the quality-of-life item of the PRO-Pall independent of age, gender, lung function, and smoking status. Conclusions: Patients reported issues in physical, psychosocial, and existential dimensions of the PRO-Pall. The PRO-Pall shows potential as a broader alternative to measures that focus mainly on physical issues.

17.
Scand J Caring Sci ; 27(4): 804-19, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23289896

RESUMO

BACKGROUND: Studies establish that many incurably ill people would prefer to die at home, whether their final home is their own home or a nursing home. Experience shows that the professionals in palliative care at the basis level need to increase their competences. The purpose of this literature review is to examine experiences with interventions regarding the development of competencies within community palliative care services - in other words, at the individual work places. METHOD: The study has been carried out as a literature review of international databases (PubMed/Medline, CHINAL, PsycInfo) with selected key words. RESULTS: The review of the literature identified 15 publications which dealt with interventions regarding education and competence building. The publications represent individual studies, only two of which were controlled. All conclude that competence building has a positive effect according to the professionals. It is unknown whether or how patients and relatives feel a positive effect from the interventions just as it is unknown how the development of competencies has actually led to a more developed practice. The effect of local competence building in palliative care in the primary sector is lacking. Methods are needed to further examinations of how a competency has actually led to a more developed practice.


Assuntos
Cuidados Paliativos/organização & administração , Competência Profissional , Qualidade da Assistência à Saúde , Casas de Saúde/organização & administração , Cuidados Paliativos/normas , Setor Privado
18.
Eur J Oncol Nurs ; 62: 102238, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36459811

RESUMO

PURPOSE: International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark. METHODS: The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n = 8), family caregivers (n = 11), healthcare professionals (n = 10); and three workshops with migrants (n = 5), social and healthcare professionals (n = 6). The study took place in six different settings in two regions across Denmark. RESULTS: The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care. CONCLUSION: This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Migrantes , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Pessoal de Saúde
19.
Int J Palliat Nurs ; 29(10): 499-506, 2023 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-37862155

RESUMO

BACKGROUND: Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. AIM: To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. METHODS: An explorative interview study was conducted among 31 nurses and three physicians concerning an intervention facilitating a fast transition from treatment at a cancer centre at a university hospital to palliation at home. A thematic analysis was conducted. FINDINGS: This article presents three out of seven themes: 1) improvement in the cessation of antineoplastic treatment in palliation; 2) improvement in organisations delivering palliation; and 3) improvement in multidisciplinary and cross-sectoral collaboration. CONCLUSIONS: The results demonstrate the demand for flexible, family-centred and integrated palliation at all levels, from communication and the collaborative relationship between healthcare professionals and families to service sectors.


Assuntos
Antineoplásicos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Neoplasias/tratamento farmacológico , Antineoplásicos/uso terapêutico
20.
J Immigr Minor Health ; 24(1): 237-255, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34709528

RESUMO

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants' access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.


Assuntos
Cuidados Paliativos , Migrantes , Comunicação , Etnicidade , Europa (Continente) , Humanos
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