BMC palliative care
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BMC palliative care · Jan 2015
Randomized Controlled TrialINSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness.
For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). ⋯ The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally.
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BMC palliative care · Jan 2015
A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients.
Advance care planning (ACP) is a process whereby values and goals are sensitively explored and documented to uphold patients' wishes should they become incompetent to make decisions in the future. Evidenced-based, effective approaches are needed. This study sought to assess the feasibility and acceptability of an ACP intervention informed by phase 1 findings and assessed the suitability of measures for a phase 3 trial. ⋯ In this phase 2 study we demonstrated feasibility of recruitment and acceptability of the ACP intervention and most outcome measures. However, patient/family preferences about when and whether to document ACP components need to be respected. Thus flexibility to accommodate variability in intervention delivery, tailored to individual patient/family preferences, may be required for phase 3 research.
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BMC palliative care · Jan 2015
Expert views on the factors enabling good end of life care for people with dementia: a qualitative study.
Dementia, of all long term illnesses, accounts for the greatest chronic disease burden, and the number of people with age-related diseases like dementia is predicted to double by 2040. People with advanced dementia experience similar symptoms to those dying with cancer yet professional carers find prognostication difficult and struggle to meet palliative care needs, with physical symptoms undetected and untreated. While elements of good practice in this area have been identified in theory, the factors which enable such good practice to be implemented in real world practice need to be better understood. The aim of this study was to determine expert views on the key factors influencing good practice in end of life care for people with dementia. ⋯ This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
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BMC palliative care · Jan 2015
The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting.
Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. ⋯ The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.
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BMC palliative care · Jan 2015
Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.
This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers. ⋯ Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients.