“Am I Going to Die?” Considering the Preparation for Research on an Example of Hospice Patients

Weronika Kamińska

doi:10.18778/1733-8077.20.1.06

Authors

Weronika Kamińska Medical University of Gdańsk, Poland

DOI:

https://doi.org/10.18778/1733-8077.20.1.06

Keywords:

Hospice, Patient, Dying, Research, Ethical Issues

Abstract

This article concerns the situations experienced by the researcher in one of the sensitive research groups—hospice patients. The article is based on the author’s experiences in three studies in Poland—94 in-depth interviews and observations in inpatient and home care hospices. Through the seven presented categories the author faced during the interviews, she analyzes the dilemmas of conducting qualitative research from a practical perspective. During studies, we learn about our preferences, sometimes defining ourselves on one of the sides—becoming a quantitative or qualitative researcher, thus deciding further scientific paths. Conducting qualitative research requires specific activities, including knowledge of the literature, selection of the proper method, and analysis of the research group (Silverman 2012). These principles turn out to be only the beginning of the process in which we intuitively, through trial and error, pave the way to deal with demanding situations, previously inexperienced emotions, coordination, and technical and ethical problems. Some studies require special preparation, particularly considering the specificity of certain research groups, such as hospice patients, who will face the dying process soon.

Downloads

Download data is not yet available.

Author Biography

Weronika Kamińska, Medical University of Gdańsk, Poland

Weronika Kamińska, Ph.D. in Sociology, an assistant in the Department of Sociology of Medicine and Social Pathology at the Medical University of Gdansk. Fulbright scholarship holder (2021/2022) and a “PhDo” scholarship holder from the Polish-American Freedom Foundation (2019/2020). In both scholarships, she carried out projects on the psychosocial needs of hospice patients. From 2022, the co-coordinator of the Polish part of public health projects for the Polish Society of Health Programs (PTPZ) and the European Public Health Alliance (EPHA). From July 2023, a team member in the NAWA intervention grant “Improving Migrants’ Access to Information on Vaccines in the TriCity.”

References

Abramson, Corey M. 2016. “Unequal Aging: Lessons from Inequality’s End Game.” Public Policy & Aging Report 2016:1-5.
Google Scholar DOI: https://doi.org/10.1093/ppar/prw006

Addington-Hall, Julia. 2022. “Research Sensitivities to Palliative Care Patients.” Cancer Care 11(3):220-224.
Google Scholar DOI: https://doi.org/10.1046/j.1365-2354.2002.00343.x

Barbour, Rosaline S. and John Schostak. 2005. “Interviewing and Focus Groups.” Pp. 41-48 in Research Methods in the Social Sciences, edited by B. Somekh and C. Lewin. London, Thousand Oaks, New Delhi: Sage Publications.
Google Scholar

Billings, J. Andrew. 1998. “What Is Palliative Care?” Journal of Palliative Medicine 1(1):73-81.
Google Scholar DOI: https://doi.org/10.1089/jpm.1998.1.73

Buss, Tomasz and Monika Lichodziejska-Niemierko. 2008. “Opieka Paliatywna W Polsce – Od idei do praktyki (również lekarza rodzinnego) [Palliative Care in Poland—From Idea to Practice (Also Family Doctor)].” Forum Medycyny Rodzinnej 2(4):277-285.
Google Scholar

Carr, Deborah. 2016. “Is Death ‘The Great Equalizer?’ The Social Stratification of Death Quality in the United States.” The Annals of the American Academy of Political and Social Science 663(1):331-354.
Google Scholar DOI: https://doi.org/10.1177/0002716215596982

Carr, Deborah and Elizabeth A. Luth. 2019. “Well-Being at the End of Life.” Annual Review of Sociology 45:515-534.
Google Scholar DOI: https://doi.org/10.1146/annurev-soc-073018-022524

Clouston, Sean A. P. and Bruce G. Link. 2021. “A Retrospective on Fundamental Cause Theory: State of the Literature and Goals for the Future.” Annual Review of Sociology 47:131-156.
Google Scholar DOI: https://doi.org/10.1146/annurev-soc-090320-094912

Dempsey, Laura et al. 2016. “Sensitive Interviewing in Qualitative Research.” Research in Nursing & Health 39(6):480-490.
Google Scholar DOI: https://doi.org/10.1002/nur.21743

Doorenbos, Ardith Z. and Stephanie Myers Schim. 2004. “Cultural Competence in Hospice.” American Journal of Hospice and Palliative Medicine 21(1):28-32.
Google Scholar DOI: https://doi.org/10.1177/104990910402100108

Ersek, Mary and Joan G. Carpenter. 2013. “Geriatric Palliative Care in Long-Term Care Settings with a Focus on Nursing Homes.” Journal of Palliative Medicine 16(10):1180-1187.
Google Scholar DOI: https://doi.org/10.1089/jpm.2013.9474

Fosler, Laura et al. 2015. “Cultural Differences in Discussion of Do-Not-Resuscitate Status and Hospice.” Journal of Hospice & Palliative Nursing 17(2):128-132.
Google Scholar DOI: https://doi.org/10.1097/NJH.0000000000000135

French, Maddy et al. 2021. “Exploring Socioeconomic Inequities in Access to Palliative and End-of-Life Care in the UK: A Narrative Synthesis.” BMC Palliative Care 20(1):1-20.
Google Scholar DOI: https://doi.org/10.1186/s12904-021-00878-0

Hui, David et al. 2013. “Concepts and Definitions for ‘Supportive Care,’ ‘Best Supportive Care,’ ‘Palliative Care,’ and ‘Hospice Care’ in the Published Literature, Dictionaries, and Textbooks.” Supportive Care in Cancer 21(3):659-685.
Google Scholar DOI: https://doi.org/10.1007/s00520-012-1564-y

Gysels, Marjolein, Cathy Shipman, and Irene J. Higginson. 2008. “Is the Qualitative Research Interview an Acceptable Medium for Research with Palliative Care Patients and Carers?” BMC Medical Ethics 9:1-6. Retrieved November 24, 2023 https://bmcmedethics.biomedcentral.com/articles/10.1186/1472-6939-9-7
Google Scholar DOI: https://doi.org/10.1186/1472-6939-9-7

Jemielniak, Dariusz. 2012. Badania jakościowe [Qualitative Research], vol. 1. Warsaw: Wydawnictwo Naukowe PWN.
Google Scholar

Magno, Josefina B. 1990. “The Hospice Concept of Care: Facing the 1990s.” Death Studies 14(2):109-119.
Google Scholar DOI: https://doi.org/10.1080/07481189008252353

Oliver, Debra et al. 2013. “Patient Safety Incidents in Hospice Care: Observations from Interdisciplinary Case Conferences.” Journal of Palliative Medicine 16(12):1561-1567.
Google Scholar DOI: https://doi.org/10.1089/jpm.2013.0104

Osterweis, Marian and Daphne S. Champagne. 1979. “The U.S. Hospice Movement: Issues in Development.” American Journal of Public Health 69(5):492-496.
Google Scholar DOI: https://doi.org/10.2105/AJPH.69.5.492

Pereira, Sandra and Pablo Hernández-Marrero. 2019. “Research Ethics in Palliative Care: A Hallmark in Palliative Medicine.” Palliative Medicine. Retrieved November 24, 2023 https://journals.sagepub.com/doi/10.1177/0269216319827178
Google Scholar DOI: https://doi.org/10.1177/0269216319827178

Raudonis, Barbara. 1992. “Ethical Considerations in Qualitative Research with Hospice Patients.” Qualitative Health Research 2(2):238-249.
Google Scholar DOI: https://doi.org/10.1177/104973239200200207

Rickerson, Elizabeth et al. 2005. “Timing of Hospice Referral and Families’ Perceptions of Services: Are Earlier Hospice Referrals Better?” Journal of the American Geriatrics Society 53(5):819-823.
Google Scholar DOI: https://doi.org/10.1111/j.1532-5415.2005.53259.x

Silverman, David. (2010). Doing Qualitative Research, 3rd ed. Los Angeles, London, New Delhi, Singapore, Washington: Sage.
Google Scholar

Sivell, Stephanie et al. 2019. “Considerations and Recommendations for Conducting Qualitative Research Interviews with Palliative and End-of-Life Care Patients in the Home Setting: A Consensus Paper.” BMJ Supportive & Palliative Care 9(1):e14.
Google Scholar DOI: https://doi.org/10.1136/bmjspcare-2015-000892

Smucker, Douglas R. et al. 2014. “Patient Safety Incidents in Home Hospice Care: The Experiences of Hospice Interdisciplinary Team Members.” Journal of Palliative Medicine 17(5):540-544.
Google Scholar DOI: https://doi.org/10.1089/jpm.2013.0111

Terrill, Alexandra L. et al. 2018. “Positive Emotion Communication: Fostering Well-Being at the End of Life.” Patient Education and Counseling 101(4):631-638.
Google Scholar DOI: https://doi.org/10.1016/j.pec.2017.11.018

Torpy, Janet M., Alison Burke, and Robert M. Golub. 2012. “Hospice Care.” JAMA 308(2):200-220.
Google Scholar DOI: https://doi.org/10.1001/jama.2012.6210

Yenurajalingam, Sriram and Eduardo Bruera. 2016. Oxford American Handbook of Hospice and Palliative Medicine and Supportive Care, 2nd ed. New York: Oxford University Press.
Google Scholar

Wilkie, Patricia. 1997. “Ethical Issues in Qualitative Research in Palliative Care.” Palliative Medicine 11:321-324.
Google Scholar DOI: https://doi.org/10.1177/026921639701100411

Wohleber, Ashley, Daniel McKitrick, and Shawn Davis. 2012. “Designing Research with Hospice and Palliative Care Populations.” American Journal of Hospice and Palliative Medicine 29(5):335-345.
Google Scholar DOI: https://doi.org/10.1177/1049909111427139