Abstract:
BACKGROUND:Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in population-based surveys. METHODS:Modelled on validated questionnaires from research in developed countries, our questionnaire was adapted to the cultural sensitivity and medico-legal context of Trinidad and Tobago. Two sets of semi-structured face-to-face cognitive interviews were done with a sample of physicians, sampling was purposive. Phase 1 assessed interpretation of the questions, terminology and content of the questionnaire. Phase 2 was tested on a heterogeneous group of physicians to identify and fix problematic questions or recurring issues. Adjustments were made incrementally and re-tested in successive interviews. RESULTS:Eighteen physicians were interviewed nationwide. Adaptations to questionnaires used in developed countries included: addition of a definition of palliative care, change of sensitive words like expedited to influenced, adjustments to question formulations, follow-up questions and answer options on medications used were added, the sequence, title and layout were changed and instructions for completion were included at the beginning of the questionnaire. CONCLUSION:A new instrument for assessing and documenting end-of-life care and circumstances of dying in a small, resource-poor Caribbean country was developed and validated, and can be readily used as a mortality follow-back instrument. Our methods and procedures of development can be applied as a guide for similar studies in other small developing countries.
journal_name
BMC Palliat Carejournal_title
BMC palliative careauthors
Jennings N,Chambaere K,Cox Macpherson C,Cox KL,Deliens L,Cohen Jdoi
10.1186/s12904-020-00630-0subject
Has Abstractpub_date
2020-08-14 00:00:00pages
123issue
1issn
1472-684Xpii
10.1186/s12904-020-00630-0journal_volume
19pub_type
杂志文章abstract:BACKGROUND:Laws allowing assisted suicide and euthanasia have been implemented in many locations around the world but some individuals suffering with terminal illness receiving palliative care services are hastening death or die by suicide without assistance. This systematic review aims to summarise evidence of palliat...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-019-0451-4
更新日期:2019-08-31 00:00:00
abstract:BACKGROUND:Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describ...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-019-0505-7
更新日期:2020-01-08 00:00:00
abstract:BACKGROUND:The Palliative Performance Scale (PPS) was first introduced in1996 as a new tool for measurement of performance status in palliative care. PPS has been used in many countries and has been translated into other languages. METHODS:This study evaluated the reliability and validity of PPS. A web-based, case sce...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-7-10
更新日期:2008-08-04 00:00:00
abstract:BACKGROUND:Implementation of quality improvements in palliative care (PC) is challenging, and detailed knowledge about factors that may facilitate or hinder implementation is essential for success. One part of the EU-funded IMPACT project (IMplementation of quality indicators in PAlliative Care sTudy) aiming to increas...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-016-0132-5
更新日期:2016-07-15 00:00:00
abstract:BACKGROUND:Over the past decades there has been a significant increase in the number of published clinical trials in palliative care. However, empirical evidence suggests that there are methodological problems in the design and conduct of studies, which raises questions about the validity and generalisability of the re...
journal_title:BMC palliative care
pub_type: 杂志文章,评审
doi:10.1186/s12904-016-0181-9
更新日期:2017-01-25 00:00:00
abstract:BACKGROUND:Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-9-17
更新日期:2010-08-05 00:00:00
abstract:BACKGROUND:The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-8-20
更新日期:2009-12-30 00:00:00
abstract:BACKGROUND:Overuse of anti-cancer therapy is an important quality-of-care issue. An aggressive approach to treatment can have negative effects on quality of life and cost, but its effect on survival is not well-defined. METHODS:Using the Surveillance, Epidemiology, and End Results-Medicare database, we identified 7,87...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-10-14
更新日期:2011-09-21 00:00:00
abstract:BACKGROUND:People with schizophrenia are at risk of receiving poorer end of life care than other patients. They are often undertreated, avoid treatment and are about half as likely to access palliative care. There are limited options for end of life care for this under-serviced group in need. This study aims to address...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-018-0309-1
更新日期:2018-03-27 00:00:00
abstract:BACKGROUND:The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solv...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-019-0422-9
更新日期:2019-04-18 00:00:00
abstract:BACKGROUND:Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and ...
journal_title:BMC palliative care
pub_type: 杂志文章,评审
doi:10.1186/s12904-015-0047-6
更新日期:2015-10-19 00:00:00
abstract:BACKGROUND:To understand the status of residents' awareness of and demand for hospice care services in Hangzhou and to provide a reference for promoting the formulation of hospice care-related policies in China. METHODS:A small cross-sectional survey of 519 adults aged over 40 years old living in the rural-urban fring...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-00628-8
更新日期:2020-08-17 00:00:00
abstract:BACKGROUND:One ambition regarding palliative care is that it should be more accessible to patients and families regardless of care setting. Previous studies show many difficulties and shortcomings in the care of patients with palliative care needs in acute care facilities, but also challenges regarding efforts to imple...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-017-0262-4
更新日期:2017-12-28 00:00:00
abstract:BACKGROUND:Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations ...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-017-0250-8
更新日期:2017-11-28 00:00:00
abstract:UNLABELLED: BACKGROUND:The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspe...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-12-5
更新日期:2013-02-05 00:00:00
abstract:BACKGROUND:Cervical cancer is mostly diagnosed at advanced stages among the majority of women in low-income settings, with palliative care being the only feasible form of care. This study was aimed at investigating palliative care knowledge and access among women with cervical cancer in Harare, Zimbabwe. METHODS:Seque...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-0523-5
更新日期:2020-02-13 00:00:00
abstract:BACKGROUND:In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of li...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-00598-x
更新日期:2020-06-23 00:00:00
abstract:BACKGROUND:This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer. METHODS:Twenty interviews were conducted with bereaved carers of older people ...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-8-6
更新日期:2009-06-16 00:00:00
abstract:BACKGROUND:Early integration of palliative care concurrently to standard cancer care is associated with several benefits for patients and their caregivers. However, communication barriers on part of the caring physicians often impede a timely referral to palliative care. This study describes the protocol of the evaluat...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-00568-3
更新日期:2020-05-12 00:00:00
abstract:BACKGROUND:Many people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training ...
journal_title:BMC palliative care
pub_type: 杂志文章,随机对照试验
doi:10.1186/s12904-019-0474-x
更新日期:2019-10-23 00:00:00
abstract:BACKGROUND:Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspectiv...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-019-0467-9
更新日期:2019-10-24 00:00:00
abstract:BACKGROUND:The use of music as therapy in multidisciplinary end-of-life care dates back to the 1970s and nowadays music therapy (MT) is one of the most frequently used complementary therapy in in-patient palliative care in the US. However existing research investigated music therapy's potential impact mainly from one p...
journal_title:BMC palliative care
pub_type: 杂志文章,评审
doi:10.1186/s12904-018-0286-4
更新日期:2018-02-20 00:00:00
abstract::Population-based mortality follow-back survey designs have been used to collect information concerning end-of-life care from bereaved family members in several countries. In Canada, this design was recently employed to gather population-based information about the end-of-life care experience among adults in Nova Scoti...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-12-28
更新日期:2013-08-06 00:00:00
abstract:BACKGROUND:During the last few decades, patients' rights have been reinforced in many countries by acts of law. Measures now include health care proxies to uphold the doctor-patient relationship and advance directives for end-of-life patients. These could be relevant tools as early as the initial diagnosis of haematolo...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-13-57
更新日期:2014-12-11 00:00:00
abstract:BACKGROUND:Even though struggling with similar symptom burden, patients with chronic heart failure (CHF) receive less palliative care than patients suffering from malignant diseases. Researchers have found that this might be related to lack of knowledge about palliative care, insufficient interprofessional communicatio...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-016-0149-9
更新日期:2016-08-15 00:00:00
abstract:BACKGROUND:In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say t...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-019-0412-y
更新日期:2019-03-21 00:00:00
abstract:BACKGROUND:The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' ...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-00633-x
更新日期:2020-08-17 00:00:00
abstract:BACKGROUND:Studies have shown that telehealth applications in palliative care are feasible, can improve quality of care, and reduce costs but few studies have focused on user acceptance of current technology applications in palliative care. Furthermore, the perspectives of health administrators have not been explored i...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/s12904-020-00644-8
更新日期:2020-09-07 00:00:00
abstract:BACKGROUND:The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death. The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerate...
journal_title:BMC palliative care
pub_type: 杂志文章
doi:10.1186/1472-684X-13-44
更新日期:2014-09-09 00:00:00
abstract:BACKGROUND:Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both...
journal_title:BMC palliative care
pub_type: 杂志文章,评审
doi:10.1186/s12904-018-0320-6
更新日期:2018-04-24 00:00:00