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Moral distress among family caregivers of people with cancer in palliative care: A qualitative study
Abstract
The study aimed to understand the triggering events of moral distress according to the family caregivers of people with cancer in palliative care. This is a longitudinal qualitative approach study, using the concept of moral distress as an interpretative reference. Ten family caregivers participated in in-depth interviews. The data were analyzed according to the inductive thematic analysis technique, and two themes were identified. In the first theme, entitled “The repercussions following diagnosis,” participants reported the uncertainties they experienced following their family member’s cancer diagnosis. In the second theme, entitled “The transformation of daily life”, participants expressed how providing care for the family member with cancer changed their daily lives. While experiencing the role of a caregiver, they faced dilemmas and uncertainties that led them to feel moral distress, since this situation will follow them continuously until the outcome of the disease.
DOI:10.5737/23688076352369
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Atli-Özba?, A., Kovanci, M.S., & Köken, A.H. (2021). Moral distress in oncology nurses: A qualitative study. Eur J Oncol Nurs., 54, 102038. https://doi.org/10.1016/j.ejon.2021.102038
Bayés, R., Arranz, P., Barbero, J., et al. (1996). Propuesta de un modelo integral para una intervención terapéutica paliativa. Med Paliat, 3, 114–21.
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
Butow, P., Havard, P.E., Butt, Z., Sharpe, L., Dhillon, H., Beatty, L., Beale, P., Cigolini, M., Kelly, B., Chan, RJ., Kirsten, L., Best, M., & Shaw, J. (2022). The impact of COVID-19 on cancer patients, their careers and oncology health professionals: A qualitative study. Patient Educ Couns., 105(7), 2397–2403. https://doi.org/10.1016/j.pec.2022.01.020
Chua, G.P., Pang, G.S.Y., Yee, A.C.P., Neo, P.S.H., Zhou, S., Lim, C., Wong, Y.Y., Qu, D.L., Pan, F.T., & Yang, G.M. (2020). Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs? BMC Cancer, 20(1), 1–15. https://doi.org/10.1186/s12885-020-07239-9
DeBoer, R. J., Mutoniwase, E., Nguyen, C., Ho, A., Umutesi, G., Nkusi, E., Sebahungu, F., Van Loon, K., Shulman, L. N., Shyirambere, C. (2021). Moral distress and resilience associated with cancer care priority setting in a resource-limited context. Oncologist, 26(7), 1189–1196. https://doi.org/10.1002/onco.13818
Deschenes, S., Gagnon, M., Park, T., Kunyk, D. (2020). Moral distress: A concept clarification. Nurs Ethics, 27(4), 1127–1146. https://doi.org/10.1177/0969733020909523
Espíndola, A. V., Quintana, A. M., Farias, C. P., München, M. A. B. (2022). Family relationships in the context of palliative care. Rev. Bioét, 26(3), 371–377. https://doi.org/10.1590/1983-80422018263256
Gaugler, J. E., Statz, T. L., Birkeland, R. W., Louwagie, K. W., Peterson, C. M., Zmora, R., Emery, A., McCarron, H. R., Hepburn, K., Whitlatch, C. J., Mittelman, M. S. & Roth, D. L. (2020). The Residential Care Transition Module: a single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care. BMC Geriatr 20, 133. https://doi.org/10.1186/s12877-020-01542-7
Gunn, K. M., Weeks, M., Spronk, K. J. J., Fletcher, C., & Wilson, C. (2022). Caring for someone with cancer in rural Australia. Supportive Care in Cancer, 30(6), 4857–4865. https://doi.org/10.1007%2Fs00520-022-06857-2
Hamric, A. B. (2014). A case study of moral distress. J. Hospice Palliat. Nurs., 16(8), 457–463. http://dx.doi.org/10.1097/NJH.0000000000000104
Karimi Moghaddam, Z., Rostami, M., Zeraatchi, A., Mohammadi Bytamar, J., Saed, O., & Zenozian, S. (2023). Caregiving burden, depression, and anxiety among family caregivers of patients with cancer: An investigation of patient and caregiver factors. Frontiers in Psychology, 14, 1059605. https://doi.org/10.3389/fpsyg.2023.1059605
Leguía, L. S., Juárez, R. M., Caro, M. P. G., Morales, M. L., & Prieto, A. M. (2019). Experiencia del Cuidador familiar con los cuidados paliativos y al final de la vida. Index Enferm, 28(1-), 51–55. http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1132-12962019000100011&lng=es&tlng=es
Llop-medina, L., Fu, Y., Garcés-Ferrer, J., & Doñate-Martínez, A. (2022). Palliative care in older people with multimorbidities: A scoping review on the palliative care needs of patients, carers, and health professionals. Int J Environ Res Public Health, 19(6), 1–14. https://doi.org/10.3390/ijerph19063195
Lu, S., Wei, F., & Li, G. (2021). The evolution of the concept of stress and the framework of the stress system. Cell Stress, 5(6), 76–85. https://doi.org/10.15698%2Fcst2021.06.250
McAndrew, N.S., Leske, J., & Schroeter, K. (2018). Moral distress in critical care nursing: The state of the science. Nurs Ethics, 25(5), 552–570. https://doi.org/10.1177/0969733016664975
McCauley, R., McQuillan, R., Ryan, K., & Foley, G. (2021). Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis. Sage Journals, 35(5), 875–885. https://doi.org/10.1177/0269216321999962
Morley, G., Ives, J., Bradbury-Jones, C., & Irvine, F. (2019). What is ‘moral distress’? A narrative synthesis of the literature. Nurs Ethics, 26(3), 646–662. https://doi.org/10.1177/0969733017724354
Neale, B., & Flowerdew, J. (2003). Time, texture and childhood: The contours of longitudinal qualitative research. International Journal of Social Research Methodology, 6(3), 189–199. https://doi.org/10.1080/1364557032000091798
Neris, R. R., & Nascimento, L. C. (2021). Childhood cancer survival: Emerging reflections on pediatric oncology nursing. Rev esc enferm USP, 55, e03761. https://doi.org/10.1590/S1980-220X2020041803761
Noble, H., & Smith, J. (2015). Issues of validity and reliability in qualitative research. Evidence-based Nursing, 18(2), 34–35. https://doi.org/10.1136/eb-2015-102054
Opsomer, S., Lepeleire, J., Lauwerier, E., & Pype, P. (2020). Resilience in family caregivers of patients diagnosed with advanced cancer – Unravelling the process of bouncing back from difficult experiences, a hermeneutic review. Eur J Gen Pract., 26(1), 79–85. https://doi.org/10.1080/13814788.2020.1784876
Owoo, B., Ninnoni, J. P., Ampofo, E. A., & Seidu, A. A. (2022). Challenges encountered by family caregivers of prostate cancer patients in Cape Coast, Ghana: A descriptive phenomenological study. BMC Palliat Care, 21(1), 1–11. https://doi.org/10.1186/s12904-022-00993-6
Pattison, N., Droney, J., & Gruber, P. (2020). Burnout: Caring for critically ill and end-of-life patients with cancer. Nurs Crit Care, 25(2), 93–101. https://doi.org/10.1111/nicc.12460
Rahimi, S., & Khatooni, M. (2024). Saturation in qualitative research: An evolutionary concept analysis. International Journal of Nursing Studies Advances, 6, 1–11. https://doi.org/10.1016/j.ijnsa.2024.100174
Ringborg, C. H., Schandl, A., Wengström, Y., & Lagergren, P. (2021). Experiences of being a family caregiver to a patient treated for oesophageal cancer—1 year after surgery. Support Care Cancer, 30(1), 915–921. https://doi.org/10.1007%2Fs00520-021-06501-5
Scheel, J. R., Parker, S., Hippe, D. S., Patrick, D. L., Nakigudde, G., Anderson, B. O., Gralow, J. R., Thompson, B., & Molina, Y. (2019). Role of family obligation stress on Ugandan women’s participation in preventive breast health. Oncologist, 24(5), 624–631. https://doi.org/10.1634%2Ftheoncologist.2017-0553
Segrin, C., Badger, T. A., Sikorskii, A., Crane, T. E., & Pace, T. W. W. (2018). A dyadic analysis of stress processes in Latinas with breast cancer and their family caregivers. Psycho-Oncology, 27, 838–846. https://doi.org/10.1002/pon.4580
Souza, A., Campos, J. Y. F. A., Santos-Neto, F. T., Araújo, M. N., & Sousa, M. N. A. (2022). Childhood cancer and emotional impacts on the family: A review of the literature. Research, Society and Development, 10(10), e56101017931. https://doi.org/10.33448/rsd-v10i10.17931
Souza, V. R. S., Marziale, M. H. P., Silva, G.T.R., & Nascimento, P.L. (2021). Translation and validation into Brazilian Portuguese and assessment of the COREQ checklist. Acta Paul Enferm, 34, eAPE02631. https://doi.org/10.37689/acta-ape/2021AO02631
Taylor, J., Fradgley, E., Clinton-Mcharg, T., Byrnes, E., & Paul, C. (2021). What are the sources of distress in a range of cancer caregivers? A qualitative study. Supportive Care in Cancer, 29(5), 2443–2453. https://doi.org/10.1007/s00520-020-05742-0
Ting, A., Lucette, A., Carver, C., & Cannady, R. S. (2019). Preloss spirituality predicts postloss distress of bereaved cancer caregivers. Ann Behav Med., 53(2), 150–157. https://doi.org/10.1093/abm/kay024
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
Ullgren, H., Tsitsi, T., Papastavrou, E., & Charalambous, A. (2018). How family caregivers of cancer patients manage symptoms at home: A systematic review. Int J Nurs Stud., 85, 68–79. https://doi.org/10.1016/j.ijnurstu.2018.05.004
Ullrich, A., Theochari, M., Bergelt, C., Marx, G., Woellert, K., Bokemeyer, C., & Oechsle, K. (2020). Ethical challenges in family caregivers of patients with advanced cancer – A qualitative study. BMC Palliative Care, 19(1), 70. https://doi.org/10.1186/s12904-020-00573-6
Ventovaara, P., Sandeberg, M.A., Räsänen, J., & Pergert, P. (2021). Ethical climate and moral distress in paediatric oncology nursing. Nurs Ethics, 28(6), 1061–1072. https://doi.org/10.1177/0969733021994169
Von Blanckenburg, P., Knorrenschild, J. R., Hofmann, M., Fries, H., Nestoriuc, Y., Seifart, U., Rief, W., & Seifart, C. (2022). Expectations, end-of-life fears and end-of-life communication among palliative patients with cancer and caregivers: A cross-sectional study. BMJ Open, 12(5), 667–675. https://doi.org/10.1136/bmjopen-2021-058531
World Health Organization. (2020). Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2019 global survey. Licence: CC BY-NC-SA 3.0 IGO.
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