Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research

Author(s):  
Puja J. Umaretiya ◽  
Maya Ilowite ◽  
Lauren Fisher ◽  
Marie Bakitas ◽  
Erin R. Currie ◽  
...  
2020 ◽  
Vol 60 (4) ◽  
pp. 857-865 ◽  
Author(s):  
Abby R. Rosenberg ◽  
Krysta Barton ◽  
Courtney Junkins ◽  
Samantha Scott ◽  
Miranda C. Bradford ◽  
...  

2000 ◽  
Vol 14 (1) ◽  
pp. 55-56 ◽  
Author(s):  
David A Seamark ◽  
James Gilbert ◽  
Clive J Lawrence ◽  
Susan Williams

2009 ◽  
Vol 37 (3) ◽  
pp. 387-394 ◽  
Author(s):  
Ann M. O'Mara ◽  
Diane St. Germain ◽  
Betty Ferrell ◽  
Tami Bornemann

2021 ◽  
Vol 20 ◽  
pp. 160940692110150
Author(s):  
David Fearon ◽  
Sean Hughes ◽  
Sarah G. Brearley

Case study research facilitates the in-depth, real-life exploration of complex phenomena from multiple perspectives. It is a well-established approach to deal with the complexities involved in palliative care research. Case studies are not aligned to a single epistemological paradigm but are defined by the identification of the case to be studied. This article examines the methodological issues of carrying out constructivist Stakian multi-case study research. It is based on the lessons learned from our case study exploring the experiences of advanced breast cancer in Mauritania, a resource-limited, Muslim majority context. Stake provides suggestions and boundaries for the case study researcher, but there is no blueprint available for a Stakian multi-case study. The researcher is encouraged to employ their creativity, intuition and ingenuity. We exercised this freedom by incorporating mixed methods of data collection within our constructivist paradigm. We resourcefully revisited the identity of the case and embedded mini-cases, we rejected traditional views of triangulation in favor of crystallization, and we employed assorted approaches to guide and enrich our within- and cross-case analyses to formulate overarching themes and multi-case assertions. Stakian case study should not be limited to constructivist researchers. We encourage any case study researchers to consider this approach, especially those who wish to employ their intuition and ingenuity to understand and describe experiences and phenomena.


2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.


2021 ◽  
Author(s):  
Rebecca Gemmell ◽  
Alison Allam ◽  
Margaret Perkins ◽  
Joanne Droney

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