BMC palliative care
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BMC palliative care · Jan 2015
Multicenter StudyEnd-of-life care research with bereaved informal caregivers--analysis of recruitment strategy and participation rate from a multi-centre validation study.
One essential element of research is the successful recruitment of participants. However, concerns are obvious regarding the ethical implications of involving terminally ill and even dying patients and their informal caregivers as research participants. This study aims to illustrate central issues encountered when recruiting bereaved informal caregivers for a questionnaire validation study on the quality of dying and death. ⋯ The recruitment strategy can be recommended to other researchers developing research with bereaved carers. The burden caused by study participation was acceptable to the researchers carrying out this research, although a small group of participants experienced high levels of burden which should be anticipated and appropriate support services offered. Family caregivers are willing to support end-of-life care research, have different motivations for participation and even reported benefits from participation. Nevertheless, study designs have to take into account and ease the potential burden of interviews for caregivers experiencing grief.
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BMC palliative care · Jan 2015
Randomized Controlled TrialEnhancing legacy in palliative care: study protocol for a randomized controlled trial of Dignity Therapy focused on positive outcomes.
Dignity Therapy is a brief psychotherapy that can enhance a sense of legacy while addressing the emotional and existential needs of patients receiving hospice or palliative care. In Dignity Therapy, patients create a formalized "legacy" document that records their most cherished memories, their lessons learned in life, as well as their hopes and dreams for loved ones in the future. To date, this treatment has been studied for its impact on mitigating distress within hospice and palliative care populations and has provided mixed results. This study will instead focus on whether Dignity Therapy enhances positive outcomes in this population. ⋯ Dignity Therapy has shown mixed results when evaluating its impact on distress, although no other study to date has solely focused on the potential positive aspects of this treatment. This study is novel in its use of mixed methods assessments to focus on positive outcomes, and will provide valuable information about patients' direct experiences in this area.
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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
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
Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.
There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. ⋯ The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.