scholarly journals Meeting complexity with collaboration: a proposed conceptual framework for participatory community-based music therapy research in end of life-care

2018 ◽  
Vol 2 (3) ◽  
Author(s):  
Wolfgang Schmid
Keyword(s):  
Music Therapy ◽  
Conceptual Framework ◽  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Life Care ◽  
Educational Strategies ◽  
Community Based ◽  
Team Members ◽  
Participatory Music

Research in end-of-life care is complex with specific ethical and practical challenges related to epistemology, methodology and recruitment of people approaching the end of life. However, to ensure the provision of high-quality care research efforts need to be aligned with the priorities of patients, their families, and interdisciplinary team members. A more systematic engagement of all three groups in research is needed to promote tailored and appropriate end-of-life care. In this methodological article I propose a conceptual framework for community-based participatory music therapy research in end-of-life care scenarios as one promising strategy to respond to ethical and practical challenges, to handle complexity and advance integration of perspectives. The conceptual framework consists of two thematic clusters i) Participlinarity across contexts, and ii) Community-based participatory music therapy research in end-of-life care scenarios. Though in the early stages of development, the framework addresses issues of educational strategies and continuity of care, and aims to contribute to innovative music therapy research in the future.

Music Therapy for End-of-Life Care

2011 ◽  
Vol 15 (6) ◽  
pp. 697-698
Author(s):  
Phyllis Whitehead
Keyword(s):  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Music therapy for end-of-life care: An updated systematic review

2016 ◽  
Vol 30 (9) ◽  
pp. 877-883 ◽  
Author(s):  
Tracey McConnell ◽  
David Scott ◽  
Sam Porter
Keyword(s):  
Systematic Review ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e037466
Author(s):  
Patricia Harasym ◽  
Sarah Brisbin ◽  
Misha Afzaal ◽  
Aynharan Sinnarajah ◽  
Lorraine Venturato ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Symptom Assessment ◽  
Assessment Tools ◽  
Life Care ◽  
Community Based ◽  
Term Care

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

scholarly journals CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S668-S668
Author(s):  
Elizabeth A Luth ◽  
Teja Pristavec
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Quality Care ◽  
Care Quality ◽  
National Study ◽  
Life Care ◽  
Care Needs ◽  
Caregiving Burden ◽  
High Burden

Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.

End-of-Life Care for Children Enrolled in a Community-Based Pediatric Palliative Care Program

2014 ◽  
Vol 17 (5) ◽  
pp. 589-591 ◽  
Author(s):  
Lisa M. Niswander ◽  
Philene Cromwell ◽  
Jeanne Chirico ◽  
Alyssa Gupton ◽  
David N. Korones
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Program ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Palliative Care Program ◽  
Community Based

Fostering trusting relationships with older immigrants hospitalised for end-of-life care

2016 ◽  
Vol 25 (6) ◽  
pp. 760-772 ◽  
Author(s):  
Megan-Jane Johnstone ◽  
Helen Rawson ◽  
Alison Margaret Hutchinson ◽  
Bernice Redley
Keyword(s):  
Health Services ◽  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Essential Element ◽  
Host Institution ◽  
Life Care ◽  
Moral Commitment ◽  
Older Immigrants ◽  
English Speaking

Background: Trust has been identified as a vital value in the nurse–patient relationship. Although increasingly the subject of empirical inquiries, the specific processes used by nurses to foster trust in nurse–patient relationships with older immigrants of non-English speaking backgrounds hospitalised for end-of-life care have not been investigated. Aims: To explore and describe the specific processes that nurses use to foster trust and overcome possible cultural mistrust when caring for older immigrants of non-English speaking backgrounds hospitalised for end-of-life care. Research design: A qualitative descriptive approach was used. Twenty-two registered nurses were recruited from four metropolitan health services in Melbourne, Australia. Ethical considerations: Research approval was granted by the Human Research Ethics Committees of the host institution and four participating health services. Findings: Thematic analysis revealed that fostering trust encompassed the following three commensurate stages: establishing trust, strengthening trust and sustaining trust. Underpinning the successful achievement of these stages was the nurses’ moral commitment (reflected in their intentional, conscious and conscientious approach) to fostering trust as an essential ingredient of quality end-of-life care. Discussion: This study has shown that while professional competencies are important to providing quality end-of-life care to older immigrant patients of non-English speaking backgrounds, it is a nurse’s moral commitment to fostering trust that may ultimately lay the foundations for a trusting quality care relationship to be established and sustained. Conclusion: This study has captured the processes used by nurses to foster trust as an essential element of quality end-of-life care in older immigrants. The characteristics of trust and the different factors influencing its expression in diverse cultural contexts are, however, under-researched. Accordingly, gaps remain in the knowledge and understanding of the specific cultural nuances and manifestations of trust across and within different cultures. This is an area that is germane to further cross-cultural and international collaborative scholarly inquiry and research.

Experiences of a Group of Senior Nursing Students with End of Life Care and Death in Turkey

2020 ◽  
pp. 003022282096123
Author(s):  
Deniz Sanli ◽  
Fatma Iltus
Keyword(s):  
Nursing Students ◽  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Death And Dying ◽  
Life Care ◽  
Death Attitudes ◽  
Positive Attitudes ◽  
Dying Patients ◽  
And Behaviors

Nursing students may feel unprepared to manage the care of dying individuals and may experience anxiety and fear related to death and dying. Preparing nursing students for this situation can help them provide quality care to dying patients. This study aimed to examine the end-of-life care values and behaviors and death attitudes of senior nursing students. In examining these variables, the Values and Behaviors of Intensive Care Nurses for End-of-Life Instrument and the Death Attitude Profile-Revised Scale were used. It was found that the students developed positive attitudes and behavior towards end-of-life care, and that they believed death to be a natural part of life and there is life after death. Students who felt that the information they received during their education was partially sufficient were more likely to have negative death attitudes. It can be recommended that teaching strategies in the education of the nursing students be developed.

scholarly journals What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

BMJ Open ◽  
2015 ◽  
Vol 5 (6) ◽  
pp. e007492 ◽  
Author(s):  
Bina Mistry ◽  
Daryl Bainbridge ◽  
Deanna Bryant ◽  
Sue Tan Toyofuku ◽  
Hsien Seow
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Community Based ◽  
What Matters
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