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1.
Palliat Med ; 28(2): 101-10, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23703237

RESUMO

BACKGROUND: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions. AIM: We examined variations in people's priorities for treatment, care and information across seven European countries. DESIGN: Telephone survey of a random sample of households; we asked respondents their priorities if 'faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors. SETTING/PARTICIPANTS: Members of the general public aged ≥ 16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. RESULTS: In total, 9344 individuals were interviewed. Most people chose 'improve quality of life for the time they had left', ranging from 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidence interval: 1%-3%, England) to 6% (95% confidence interval: 4%-7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%-17%, Spain) to 40% (95% confidence interval: 37%-43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. CONCLUSIONS: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.


Assuntos
Prioridades em Saúde , Neoplasias/psicologia , Qualidade de Vida , Assistência Terminal , Doente Terminal/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Comparação Transcultural , Tomada de Decisões , Europa (Continente)/epidemiologia , Feminino , Humanos , Disseminação de Informação , Entrevistas como Assunto , Expectativa de Vida , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Razão de Chances , Cuidados Paliativos , Educação de Pacientes como Assunto , Preferência do Paciente , Inquéritos e Questionários , Adulto Jovem
2.
Eur J Public Health ; 24(3): 521-7, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23487548

RESUMO

BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. RESULTS: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.


Assuntos
Acessibilidade aos Serviços de Saúde , Opinião Pública , Melhoria de Qualidade , Assistência Terminal , Adolescente , Adulto , Idoso , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Assistência Terminal/normas , Adulto Jovem
3.
BMC Palliat Care ; 13: 48, 2014 Oct 23.
Artigo em Inglês | MEDLINE | ID: mdl-25927972

RESUMO

BACKGROUND: Care homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference. METHODS: We conducted a cross-sectional telephone survey among 9,344 adults from random private households in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We asked participants where they would least prefer to die in a situation of serious illness with less than one year to live. Multivariate binary logistic regressions were used to identify factors associated with choosing care homes as the least preferred place of death in each country. RESULTS: Care homes were the most frequently mentioned least preferred place of death in the Netherlands (41.5%), Italy and Spain (both 36.7%) and the second most frequent in England (28.0%), Portugal (25.8%), Germany (23.7%) and Flanders (18.9%). Only two factors had a similar and significant effect on the least preferred place of death in more than one country. In Germany and the Netherlands those doing housework were less likely to choose care homes as their least preferred place (AOR 0.72; 95% CI:0.54-0.96 and AOR 0.68; 95% CI:0.52-0.90 respectively), while those born in the country where the survey took place were more likely to choose care homes (AOR 1.77; 95% CI:1.05-2.99 and AOR 1.74; 95% CI:1.03-2.95 respectively). Experiences of serious illness, death and dying were not associated with the preference. CONCLUSIONS: Our results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. From a research perspective and in order to allow people to be cared for and die where they wish, our findings highlight the need to build more in depth evidence on reasons underlying this negative preference.


Assuntos
Casas de Saúde/estatística & dados numéricos , Cuidados Paliativos/psicologia , Preferência do Paciente/estatística & dados numéricos , Assistência Terminal/psicologia , Adolescente , Adulto , Idoso , Atitude Frente a Morte , Comparação Transcultural , Estudos Transversais , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Inquéritos e Questionários , Assistência Terminal/estatística & dados numéricos
4.
BMC Cancer ; 13: 105, 2013 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-23496878

RESUMO

BACKGROUND: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this. METHODS: Telephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression. RESULTS: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80). CONCLUSIONS: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.


Assuntos
Efeitos Psicossociais da Doença , Neoplasias/complicações , Neoplasias/terapia , Assistência Terminal , Adolescente , Adulto , Fatores Etários , Idoso , Intervalos de Confiança , Dispneia/etiologia , Europa (Continente) , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Vida Independente , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Razão de Chances , Dor/etiologia , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem
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