References
- Boland J, Currow DC, Wilcock A, Tieman J, Hussain JA, Pitsillides C, et al. A systematic review of strategies used to increased recruitment of people with cancer or organ failure into clinical trials: Implications for palliative care research. J Pain Symptom Manage 2015;49:762-72. https://doi.org/10.1016/j.jpainsymman.2014.09.018
- Masso M, National Palliative Care Program (Australia); Australia. Department of Health and Ageing. Ethical research in palliative care: a guide through the Human Research Ethics Committee process. Canberra:National Palliative Care Program;c2004.
- Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, et al. Measuring what matters: Top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. J Pain Symptom Manage 2015;49:773-81. https://doi.org/10.1016/j.jpainsymman.2015.01.012
- Park M, Yeom HA, Yong SJ. Hospice care education needs of nursing home staff in South Korea: a cross-sectional study. BMC Palliat Care 2019;18:20. https://doi.org/10.1186/s12904-019-0405-x
- Singer PA, Bowman KW. Quality end-of-life care: a global perspective. BMC Palliat Care 2002;1:4. https://doi.org/10.1186/1472-684X-1-4
- Yun YH, Kang EK, Lee J, Choo J, Ryu H, Yun HM, et al. Development and validation of the quality care questionnaire-palliative care (QCQ-PC): patient-reported assessment of quality of palliative care. BMC Palliat Care 2018;17:40 https://doi.org/10.1186/s12904-018-0296-2
- Clark J, Gardiner C, Barnes A. International palliative care research in the context of global development: a systematic mapping review. BMJ Support Palliat Care 2018;8:7-18. https://doi.org/10.1136/bmjspcare-2015-001008
- Takesaka J, Crowley R, Casarett D. What is the risk of distress in palliative care survey research? J Pain Symptom Manage 2004;28:593-8. https://doi.org/10.1016/j.jpainsymman.2004.03.006
- Currorw D, Allingham S, Yates P, Johnson C, Clark K, Eagar K. Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Support Care Cancer 2015;23:307-15. https://doi.org/10.1007/s00520-014-2351-8
- Terry W, Olson LG, Ravenscroft P, Wilss L, Boulton-Lewis G. Hospice patients’ views on research in palliative care. Intern Med J 2006;36:406-13. https://doi.org/10.1111/j.1445-5994.2006.01078.x
- Abernethy AP, Capell WH, Aziz NM, Ritchie C, Prince-Paul M, Bennett RE et al. Ethical conduct of palliative care research: Enhancing communication between investigators and institutional review boards. J Pain Symptom Manage 2014;48:1211-21. https://doi.org/10.1016/j.jpainsymman.2014.05.005
- Casarett D, Kassner CT, Kutner JS. Recruiting for research in hospice: feasibility of a research screening protocol. J Palliat Med 2004;7:854-60. https://doi.org/10.1089/jpm.2004.7.854
- Casarett DJ, Knebel A, Helmers K. Ethical challenges of palliative care research. J Pain Symptom Manage 2003;25:S3-5. https://doi.org/10.1016/S0885-3924(03)00058-7
- Casarett DJ, Karlawish JH. Are special ethical guidelines needed for palliative care research? J Pain Symptom Manage 2000;20:130-9. https://doi.org/10.1016/S0885-3924(00)00164-0
- Sinclair S. Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. CMAJ 2011;183:182-7. https://doi.org/10.1503/cmaj.100511
- Pereira SM, Fonseca AM, Carvalho AS. Burnout in palliative care: a systematic review. Nurs Ethics 2011;18:317-26. https://doi.org/10.1177/0969733011398092
- Kassa H, Murugan R, Zewdu F, Hailu M, Woldeyohannes D. Assessment of knowledge, attitude and practice and associated factors towards palliative care among nurses working in selected hospitals, Addis Ababa, Ethiopia. BMC Palliat Care 2014;13:6. https://doi.org/10.1186/1472-684X-13-6
- Fine PG. Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life. J Pain Symptom Manage 2003:25:S53-62. https://doi.org/10.1016/S0885-3924(03)00056-3
- National Hospice and Palliative Care Organization. Ethical principles: Guidelines for hospice and palliative care clinical and organizational conduct (Item #: 700270). Alexandria, VA:National Hospice and Palliative Care Organization;c2006.
- Friesen P, Kearns L, Redman B, Caplan AL. Rethinking the Belmont Report? Am J Bioethics 2017;17:15-21. https://doi.org/10.1080/15265161.2016.1275883
- O'Mara AM, St Germain D, Ferrell B, Bornemann T. Challenges to and lessons learned from conducting palliative care research. J Pain Symptom Manage 2009;37:387-94. https://doi.org/10.1016/j.jpainsymman.2008.03.014
- Lee S, Kristjanson L. Human research ethics committees: Issues in palliative care research. Int J Palliat Nurs 2003;9:13-8. https://doi.org/10.12968/ijpn.2003.9.1.11040
- Agar M, Ko DN, Sheehan C, Chapman M, Currow DC. Informed consent in palliative care clinical trials: challenging but possible. J Palliat Med 2013;16:485-91. https://doi.org/10.1089/jpm.2012.0422
- Lutz KF, Shelton KC, Robrecht LC, Hatton DC, Beckett AK. Use of certificates of confidentiality in nursing research. J Nurs Scholarsh 2000;32:185-8. https://doi.org/10.1111/j.1547-5069.2000.00185.x
- Pino M, Parry R, Feathers L, Faull C. Is it acceptable to video-record palliative care consultations for research and training purposes? A qualitative interview study exploring the views of hospice patients, carers and clinical staff. Palliative Med 2017;31:707-15. https://doi.org/10.1177/0269216317696419