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BACKGROUND: Interventions targeting the needs of caregivers of cardiac patients are few, and in most cases, no effect is found on caregivers' well-being. A closer look at the existing interventions will provide a solid foundation for future efforts to develop effective interventions targeted at caregivers of cardiac patients. OBJECTIVE: The study's objective was to scrutinize and discuss interventions targeting caregivers of cardiac patients and contribute to reflections that will improve future interventions. METHODS: Systematic scoping of the literature within the field was conducted through a literature search in PubMed, EMBASE, CINAHL, PsycINFO, and Cochrane Library from January 2011 to May 2022. The development of search terms and inclusion criteria was inspired by the Patient problem/population, Intervention, Comparison/Control, and Outcome approach, and the Medical Research Council framework for developing and evaluating complex interventions served as the underlying basis for the analysis. RESULTS: Eleven articles were included. The interventions reported in the articles were generally not systematically developed and did not include field-specific, methodological, and theoretical reflections. Furthermore, the development process behind the studies seemed not to be transparent. CONCLUSIONS: Lack of systematic methodology and methodological transparency in the reviewed studies hinders further testing of interventions and might explain lack of evidence for effective interventions within the field. More systematic, needs-based, and well-documented interventions targeting caregivers of various kinds of cardiac patients are needed to develop the field to the benefit of caregivers, patients, and society.
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Knowledge about effective coping strategies is important to support bereaved adolescents who have lost a parent. We used data on 104 bereaved adolescents (13-17 years) from the FALCON nationwide questionnaire study of parentally bereaved families. We examined associations between adolescents' control-oriented and escape-oriented coping strategies (KidCOPE scale) approximately two months after loss and grief symptoms (PG-13 scale) at six months follow-up. We also examined associations between the perceived efficacy of each coping strategy at baseline and grief symptoms at six months. The use of escape-oriented coping (e.g., distraction, self-criticism and social withdrawal) was associated with higher grief symptoms at six months follow-up (ß = 0.4, 95% CI 0.1-0.9, p = 0.02), but no associations were found for control-oriented coping or perceived coping efficacy. Finding alternatives to the use of escape-oriented coping strategies may be an important part of grief interventions for bereaved adolescents.
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Existential suffering refers to the distress arising from an inner realisation that life has lost its meaning or when life is threatened by disease. Compassionate and conscious conversation conducted by healthcare professionals is a way to alleviate existential suffering. In this review, we present a simple conversation tool which can be used to structure and build experience in end-of-life conversations and alleviation of existential suffering. The tool aims for patients to feel dignified and better understood in their existential questions and for doctors to feel better equipped in helping the patients with their suffering.
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Comunicação , Relações Médico-Paciente , Humanos , Empatia , Assistência Terminal/psicologia , Estresse Psicológico/psicologia , ExistencialismoRESUMO
BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference. PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients. Patients/material: Patients aged 18+ years who died from 2010 until 2020. METHOD: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment. RESULTS: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5-7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice. INTERPRETATION: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.
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Bases de Dados Factuais , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Dinamarca , Neoplasias/terapia , Feminino , Idoso , Masculino , Pessoa de Meia-Idade , Adulto , Idoso de 80 Anos ou mais , Indicadores de Qualidade em Assistência à Saúde , Adulto Jovem , Sistema de Registros , Melhoria de Qualidade , Adolescente , Medidas de Resultados Relatados pelo Paciente , Encaminhamento e Consulta/estatística & dados numéricos , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. AIM: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. DESIGN: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. DATA SOURCES: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998-May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. RESULTS: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. CONCLUSIONS: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.
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Pesar , Humanos , Criança , Feminino , Masculino , Adolescente , Adulto , Família/psicologia , Pré-Escolar , Pais/psicologiaRESUMO
This article explores how bereaved individuals co-construct social support and social norms in the social interaction of 14 bereavement group meetings in Denmark. To study this, we used a discourse analytical approach focusing on how the participants position their social supporters. The results show that the participants designate, uphold, and presuppose two hierarchical positions to bereaved and non-bereaved supporters with different abilities to understand them. Based on this finding, the concepts of "grief participation rights" and "social support hierarchy" are proposed to supplement existing notions of "rights to grieve" and "grief hierarchy." These concepts suggest that non-bereaved supporters are not accorded the same participatory rights in social support conversations as bereaved individuals who have suffered a similar loss as the speaker. The concepts are discussed in relation to effective social support and in the context of research on social disconnection in grief.
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Luto , Interação Social , Humanos , Pesar , Apoio Social , ComunicaçãoRESUMO
Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON-the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents and children were collected within 2 months of death with ongoing follow-up assessments up to 18 months post-death. A total of 992 families were invited. The final cohort consisted of 250 families (250 widowed parents, 134 adolescents, 120 children aged 6-12 years and 63 children aged 0-5 years). In this paper, we describe the rationale for the cohort's creation, the challenges of researching grief in families, the methods used and future plans to utilize this unique family-level dataset.
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Luto , Pesar , Criança , Adolescente , Humanos , Estudos Prospectivos , Pais , Estudos Longitudinais , DinamarcaRESUMO
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.
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Antineoplásicos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Neoplasias/tratamento farmacológico , Antineoplásicos/uso terapêuticoRESUMO
Despite the vast developments in research on loss and grief, dominant grief models fall short in reflecting the comprehensive issues grieving persons are facing. Three causes seem to be at play: grief is usually understood to be connected to death and other types of loss are under-researched; the majority of research is done from the field of psychology and on pathological forms of grief, hardly integrating research from other disciplines; and the existential suffering related to grief is not recognized or insufficiently integrated in the dominant models. In this paper, we propose an integrated process model (IPM) of loss and grief, distinguishing five dimensions of grief: physical, emotional, cognitive, social, and spiritual. The integrated process model integrates therapies, tools, and models within different scientific theories and paradigms to connect disciplines and professions. The comprehensive and existential understanding of loss and grief has relevance for research, clinical settings and community support.
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PURPOSE: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. METHODS: A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. RESULTS: Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. CONCLUSION: This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions.
There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work.When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions.Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care.
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Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome - quality of life - and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost.
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There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.
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Doenças Pulmonares Intersticiais , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Cuidadores/psicologia , Doenças Pulmonares Intersticiais/terapia , Cuidados Paliativos , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Qualidade de VidaRESUMO
Background The Domus study, a randomized controlled trial (RCT), evaluated the effect of home-based specialized palliative care (SPC) reinforced with a psychological intervention for the patient-caregiver dyad on increasing advanced cancer patients' time spent at home, as opposed to hospitalized, and the number of home deaths. As palliative care extends to include support for patients' families and may thus assist caregivers and decrease demands on them, in this study we evaluated a secondary outcome, caregiver burden.Material and Methods Patients with incurable cancer and their caregivers were randomized (1:1) to care as usual or home-based SPC. Caregiver burden was assessed using the Zarit Burden Interview (ZBI) at baseline and 2, 4, 8 weeks and 6 months after randomization. Intervention effects were assessed in mixed effects models.Results A total of 258 caregivers were enrolled. Eleven per cent of informal caregivers experienced severe caregiver burden at baseline. Caregiver burden increased significantly over time in both groups (p = 0.0003), but no significant effect of the intervention was seen on overall caregiver burden (p = 0.5046) or burden subscales measuring role and personal strain.Conclusion In line with the majority of previous RCTs, the Domus intervention was not able to significantly reduce caregiver burden. Future interventions should consider targeting only caregivers reporting the greatest caregiver burden.
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Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Sobrecarga do Cuidador , Intervenção Psicossocial , Cuidadores/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Qualidade de VidaRESUMO
CONTEXT: The Danish health care system provides palliative care for terminally ill patients and their family caregivers. However, initiatives to support family caregivers are not systematically organized. OBJECTIVES: We aimed to examine the association between self-reported experience of missing contact to health care professionals involved in palliative care, and symptoms of grief and depression three years post-loss. METHODS: We conducted a prospective population-based survey of 3635 family caregivers to terminally ill patients. At six months follow-up, the caregivers reported whether they missed contact to the general practitioner, home care nurse, hospital staff, and/or palliative care team. Associations between missing contact and symptoms of prolonged grief (Prolonged-Grief-13) and depression (Beck Depression Inventory-II) three years after bereavement were analyzed with multivariable logistic regression analysis. RESULTS: We found that an experience of missing contact with health care professionals six months after bereavement was significantly associated with symptoms indicative of prolonged grief disorder and depression after three years. The strongest association was found for missing contact with the general practitioner with an adjusted OR = 4.0 (95%CI: 1.9;8.3) for prolonged grief and an adjusted OR = 5.2 (95% CI: 3.4;7.9) for depression. CONCLUSION: Experiencing missing contact with health care professionals shortly after bereavement was associated with adverse psychological reactions. Family caregivers may benefit from bereavement support to prevent further complications. A proactive approach with assessment of support needs and risk of complications early during the patient's illness trajectory may target support at those who needs it.
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Luto , Serviços de Assistência Domiciliar , Humanos , Estudos Prospectivos , Pesar , Cuidados Paliativos , Cuidadores/psicologiaRESUMO
The psychological consequences of losing a parent to cancer are unclear. We investigated whether experiencing parental death to cancer before 18 years of age increases the risk of psychotropic medication. We used register data of all children born in Denmark between 1 January 1987 and 31 December 2016 (N = 1,488,846). We assessed rate ratios (RRs) with 95% confidence intervals (CIs) for first redeemed prescription of antidepressants, anxiolytics and hypnotics according to parental death status using Poisson multi-state models. We further examined whether the associations differed according to the gender of the deceased parent, child's age at the time of death or the parental length of illness. Cancer-bereaved children had a significantly increased risk of first prescription of psychotropic medication (rate ratio, RR 1.22, 95% confidence interval, CI 1.10-1.34 for males; RR 1.18, 95% CI 1.09-1.28 for females). Associations were strongest if the parent had the same sex as the child and if the parent died within one year of diagnosis. The risk was highest during the first six months after the loss (RR 2.35, 95% confidence interval, CI 1.48-3.73 for males; RR 1.81, 95% CI 1.17-2.80 for females). Children who lose a parent to cancer, particularly in cases when the disease progressed quickly, may need extra psychological support, especially during the first six months after the death.
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Luto , Neoplasias , Morte Parental , Masculino , Feminino , Humanos , Criança , Psicotrópicos/uso terapêutico , Antidepressivos/uso terapêutico , Pais/psicologia , Neoplasias/tratamento farmacológicoRESUMO
Objetivo: El objetivo de este trabajo es describir y comparar el tipo y las características de atención al duelo en Europa y España, así como actualizar e identificar avances en España con el fin de mejorar la atención al duelo. Método: Estudio observacional, descriptivo, prospectivo y comparativo. Realizado a partir de los datos del grupo de trabajo de duelo de la EAPC relativos a España, recogidos mediante un cuestionario que consta de 54 preguntas en 6 secciones: antecedentes, apoyo, personal, acceso y niveles de cuidado, aspectos comunitarios, recursos y modelo de atención. Fue distribuido por correo electrónico a través de la EAPC a 56 asociaciones nacionales de CP. Las comparaciones entre Europa y España se realizaron utilizando la prueba de Chi-cuadrado de Pearson. Resultados: La atención al duelo se ofrece en el 83 % de los 314 servicios que responden en Europa y en el 73 % de 56 servicios en España, con datos similares a estudios anteriores españoles. La mayoría de servicios corresponden a unidades hospitalarias. El tipo de soporte o intervención especializada depende del nivel de atención en ambos grupos. En Europa, el 32 % dispone de directrices o guías nacionales de duelo en su país, en España el 61 % de los servicios, lo que facilita la actuación. Los instrumentos formales de riesgo son utilizados solo por una cuarta parte de los servicios. Conclusiones: Este estudio presenta un avance y un reto futuro en la atención al duelo en Europa y España. Los datos han mostrado que la atención al duelo no forma parte de todos los servicios. El número de respuestas a los cuestionarios no ha aumentado ni se han incrementado los servicios en España. Tanto en Europa como en España es necesario seguir potenciando, formalizando e incrementando servicios con atención al duelo, como una parte esencial de los cuidados paliativos. (AU)
Objetive: To describe and compare the type and characteristics of bereavement care in Europe and Spain. To update and identify advances in Spain for improving grief care. Method: An observational, descriptive, prospective and comparative study. Made on data from the EAPC bereavement group relating to Spain, collected through a questionnaire consisting of 54 questions in 6 sections: background; support; personal; access, levels of care; community aspects; resources and care model. It was distributed by online mail via the EAPC to 56 national PC associations. Comparisons between Europe and Spain were made using Pearsons χ2 test. Results: Bereavement care is offered by 83 % of the 314 responding services in Europe and in 73% of 56 services in Spain, with similar data to previous Spanish studies. Most services correspond to hospital units. The type of support or specialized intervention depends on level of care in both groups. In Europe, 27 % have National Grief Guides in their country, in Spain 61 % of services, which facilitates action. Formal risk instruments are used by only a quarter of the services. Conclusions: This study presents an advance and a future challenge in bereavement care in Europe and Spain. Data have shown that bereavement care is not included in all services. The numbers of responses to questionnaires have not increased, nor have services in Spain increased. Both in Europe and in Spain, it is necessary to continue promoting, formalizing and increasing services with attention to grief as an essential part of palliative care services. (AU)
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Humanos , Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Epidemiologia Descritiva , Estudos Prospectivos , Espanha , Inquéritos e Questionários , Europa (Continente)RESUMO
PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Cuidadores , Dinamarca , Humanos , Avaliação das NecessidadesRESUMO
BACKGROUND: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. AIM: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. DESIGN: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%-79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. SETTING/PARTICIPANTS: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. RESULTS: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. CONCLUSIONS: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.
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Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Consenso , Técnica Delphi , Europa (Continente) , HumanosRESUMO
PURPOSE: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008). METHODS: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative. RESULTS: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement. CONCLUSION: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
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Luto , Cuidadores/psicologia , Depressão/etiologia , Idoso , Dinamarca , Depressão/psicologia , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Assistência TerminalRESUMO
Background: Functional impairment is essential in the diagnostic criteria for prolonged grief disorder (PGD) in the ICD-11. It refers to the negative impact on everyday life, including inability to maintain the usual level of functioning. We aimed to assess the extent of functional impairment, emotion-related role limitation, and impaired social functioning before and after bereavement, and to explore associations with PGD, as measured by the 13-item Prolonged Grief Scale (PGDPG13). Method: Relatives of terminally ill patients (n = 1,622) completed a questionnaire before and after bereavement. The questionnaire assessed "overall functional impairment" (PG-13 item) and "aspects of functional impairment" measured by mean scores of the 36-item Short Form Survey (SF-36) subscales emotional role and social functioning (0: worst; 100: best). We analyzed associations between PGDPG13 and functional impairment prior to bereavement using logistic regression models adjusted for age, gender, personal relation, education, time interval to patient's death, and pre-loss grief. Results: In total, 51% reported overall functional impairment before bereavement, 27% reported functional impairment at 6 months after bereavement, and 19% reported functional impairment at 3 years after bereavement. The mean emotional role score was 47.5 (95%CI: 45.4-49.7) before bereavement, increasing to 77.4 (95%CI: 75.7-79.0) at 3 years after bereavement, compared to 85.1 (95%CI: 77.6-92.6) in a reference sample. Mean social functioning score increased gradually reaching the mean of the reference sample at 3 years after bereavement. PGDPG13 was present in 26% of those with overall functional impairment at 6 months after bereavement, decreasing to 11% at 3 years after bereavement. Pre-bereavement measures of emotional role and social functioning were associated with PGDPG13at 6 months and 3 years after bereavement. Discussion: Overall functional impairment was prevalent as reflected in low scores on daily activities and social functioning compared to a reference sample. Functioning may be an important factor during caregiving and bereavement and pre-bereavement functional impairment was associated with PGDPG13. Future studies should investigate if maintaining daily activities and social functioning before bereavement could be key in early supportive care. Moreover, the role of functional impairment in bereavement interventions should be explored.