The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study

References

• Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51(7):1–11. doi:10.1016/S0277-9536(00)00098-8.
   PubMed Web of Science ®Google Scholar
• Virdun C, Luckett T, Davidson PM, et al. Generating key practice points that enable optimal palliative care in acute hospitals: results from the opal project’s mid-point meta-inference. Int J Nurs Stud Adv. 2021;3:100035. doi:10.1016/j.ijnsa.2021.100035.
   Google Scholar
• Murray SA, Kendall M, Mitchell G, et al. Palliative care from diagnosis to death. BMJ. 2017;356:j878. doi:10.1136/bmj.j878.
   PubMed Web of Science ®Google Scholar
• Thorne S, Roberts D, Sawatzky R. Unravelling the tensions between chronic disease management and end-of-life planning. Res Theory Nurs Pract. 2016;30(2):91–103. doi:10.1891/1541-6577.30.2.91.
   PubMed Web of Science ®Google Scholar
• Hannon B, Swami N, Rodin G, et al. Experiences of patients and caregivers with early palliative care: a qualitative study. Palliat Med. 2017;31(1):72–81. doi:10.1177/0269216316649126.
   PubMed Web of Science ®Google Scholar
• Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the lancet commission report. Lancet. 2018;391(10128):1391–1454. doi:10.1016/S0140-6736(17)32513-8.
   PubMed Web of Science ®Google Scholar
• Worldwide Hospice Palliative Care Alliance. Global atlas of palliative care. 2nd ed. London (UK): World Health Organization; 2020 [cited 2023 Mar 15]. Available from: https://www.thewhpca.org/resources/global-atlas-on-end-of-life-care.
   Google Scholar
• Arias-Casais N, Garralda E, Rhee JY, et al. EAPCU Atlas of Palliative Care in Europe 2019. 2019. Available from: https://www.researchgate.net/publication/333390123_EAPCU_Atlas_of_Palliative_Care_in_Europe_2019. Accessed March 15, 2023.
   Google Scholar
• Osman H, Rihan A, Garralda E, et al. Atlas of Palliative Care in the Eastern Mediterranean Region. 2017. Available from: https://dadun.unav.edu/handle/10171/43303. Accessed March 15, 2023.
   Google Scholar
• Currow DC, Allingham S, Yates P, et al. Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Support Care Cancer. 2015;23(2):307–315. doi:10.1007/s00520-014-2351-8.
   PubMed Web of Science ®Google Scholar
• Håkansson Eklund J, Holmström IK, Kumlin T, et al. Same same or different?" a review of reviews of person-centered and patient-centered care. Patient Educ Couns. 2019;102(1):3–11. doi:10.1016/j.pec.2018.08.029.
   PubMed Web of Science ®Google Scholar
• World Health Organization. Strengthening of palliative care as a component of comprehensive care throughout the life course. Sixty-seventh World Health Assembly. 2014. Available from: https://apps.who.int/iris/bitstream/handle/10665/162863/A67_R19-en.pdf?sequence=1&isAllowed=y. Accessed March 15, 2023.
   Google Scholar
• Centeno C, Lynch T, Donea O, et al. EAPCU atlas of palliative care in Europe 2013. Full Edition. Milan: EAPCU Press; 2013.
   Google Scholar
• Benítez Del Rosario M, Asensio Fraile A. Fundamentos y objetivos de los cuidados paliativos. Aten Primaria. 2002;29(1):50–52. doi:10.1016/S0212-6567(02)70499-X.
   PubMedGoogle Scholar
• Molina Linde JM, Romero Cotelo J, Romero Rodríguez Y, et al. Encuesta de satisfacción a cuidadores en una unidad de cuidados paliativos. Med Paliat. 2006;13(1):11–17.
   Google Scholar
• Fernández-Isla LE, Conde-Valvis-Fraga S, Fernández-Ruíz JS. Grado de satisfacción de los cuidadores principales de pacientes seguidos por los equipos de cuidados paliativos. SEMERGEN - Med Fam. 2016;42(7):476–481. doi:10.1016/j.semerg.2016.02.011.
   Google Scholar
• Pidgeon TM, Johnson CE, Lester L, et al. Perceptions of the care received from Australian palliative care services: a caregiver perspective. Palliat Support Care. 2018;16(2):198–208. doi:10.1017/S1478951517000177.
   PubMed Web of Science ®Google Scholar
• Yin RK. Case study research and applications: design and methods. 6th ed. Thousand Oaks (CA): Sage Publications; 2018. doi: 10.1177/1356389013497081
   Google Scholar
• Whitehead K, Ala-Leppilampi K, Mpl M, et al. Factors that determine the experience of transition to an inpatient palliative care unit for patients and caregivers: a qualitative study. J Palliat Care. 2022;37(4):579–585. doi:10.1177/08258597221105001.
   PubMed Web of Science ®Google Scholar
• Albrecht TA, Hoppe R, Winter MA. How caregivers cope and adapt when a family member is diagnosed with a hematologic malignancy: informing supportive care needs. Cancer Nurs. 2022;45(6): e 849–E855. doi:10.1097/NCC.0000000000001063.
   Web of Science ®Google Scholar
• Hoppe R, Winter MA, Graap K, et al. Impact of a hematologic malignancy diagnosis and treatment on patients and their family caregivers. Oncol Nurs Forum. 2022;49(5):445–453. doi:10.1188/22.ONF.445-453.
   PubMed Web of Science ®Google Scholar
• Ahmed S, Naqvi SF, Sinnarajah A, et al. Patient & caregiver experiences: qualitative study comparison before and after implementation of early palliative care for advanced colorectal cancer. Can J Nurs Res. 2023;55(1):110–125. doi:10.1177/08445621221079534.
   PubMed Web of Science ®Google Scholar
• Rodríguez M, Feng A, Menjívar C, et al. WhatsApp as a facilitator of expressions of gratitude for palliative care professionals. Int J Med Inform. 2022;166:104857. doi:10.1016/j.ijmedinf.2022.104857.
   PubMed Web of Science ®Google Scholar
• Afolabi OA, Nkhoma K, Soyannwo O, et al. Integrated primary palliative care in Nigeria- Perspectives of patients, families and providers. J Pain Symptom Manage. 2022;64(4):319–329. doi:10.1016/j.jpainsymman.2022.06.019.
   PubMed Web of Science ®Google Scholar
• Carpenter C, Suto M. Qualitative research for occupational and physical therapists: a practical guide. Oxford (UK): Wiley-Blackwell; 2008.
   Google Scholar
• Baxter P, Jack S. Qualitative case study methodology: study design and implementation for novice researchers. TQR. 2015;13:544–559. doi:10.46743/2160-3715/2008.1573.
   Google Scholar
• Korstjens I, Moser A. Series: practical guidance to qualitative research. Part 2: context, research questions and designs. Eur J Gen Pract. 2017;23(1):274–279. doi:10.1080/13814788.2017.1375090.
   PubMed Web of Science ®Google Scholar
• Dossett LA, Kaji AH, Cochran A. SRQR and COREQ reporting guidelines for qualitative studies. JAMA Surg. 2021;156(9):875–876. doi:10.1001/jamasurg.2021.0525.
   PubMed Web of Science ®Google Scholar
• Ramani S, Könings KD, Mann K, et al. A guide to reflexivity for qualitative researchers in education. Acad Med. 2018; Aug93(8):1257–1257. PMID: 29697429. doi:10.1097/ACM.0000000000002263.
   PubMedGoogle Scholar
• Jootun D, McGhee G, Marland GR. Reflexivity: promoting rigour in qualitative research. Nurs Stand. 2009 Feb 11-17;23(23):42–46. PMID: 19263905. doi:10.7748/ns2009.02.23.23.42.c6800.
   Google Scholar
• Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18. doi:10.1001/jamasurg.2021.0525.
   PubMed Web of Science ®Google Scholar
• Gómez-Batiste X, Martínez-Muñoz M, Blay C, et al. Utility of the NECPAL CCOMS-ICO© tool and the surprise question as screening tools for early palliative care and to predict mortality in patients with advanced chronic conditions: a cohort study. Palliat Med. 2017;31(8):754–763. doi:10.1177/0269216316676647.
   PubMed Web of Science ®Google Scholar
• McCormick PJ, Lin H, Mo Deiner SG, et al. Validation of the all patient refined diagnosis related group (APR-DRG) risk of mortality and severity of illness modifiers as a measure of perioperative risk. J Med Syst. 2018;42(5):81. doi:10.1007/s10916-018-0936-3.
   PubMed Web of Science ®Google Scholar
• Horn S, Horn RA. Reliability and validity of the severity of illness index. Med Care. 1986;24(2):159–178. doi:10.1097/00005650-198602000-00007.
   PubMed Web of Science ®Google Scholar
• Hernández-Bello E, Bueno-Lozano M, Salas-Ferrer P, et al. PercePCUión de la calidad de vida y satisfacción con la asistencia sanitaria recibida en un grupo de pacientes oncológicos terminales que reciben cuidados paliativos en un hospital de zaragoza, españa. Rev Colomb Cancer. 2016;20(3):110–116. doi:10.1016/j.rccan.2016.04.003.
   Google Scholar
• Arraras JI, Vera R, Martínez M, et al. The EORTC cancer in-patient satisfaction with care questionnaire: EORTC in-PATSAT32. Clin Transl Oncol. 2009;11(4):237–242. doi:10.1007/s12094-009-0346-6.
   PubMed Web of Science ®Google Scholar
• Brédart A, Bottomley A, Blazeby JM, et al. An international prospective study of the EORTC cancer in-patient satisfaction with care measure (EORTC in-PATSAT32). Eur J Cancer. 2005;41(14):2120–2131. doi:10.1016/j.ejca.2005.04.041.
   PubMed Web of Science ®Google Scholar
• Nowell LS, Norris JM, White DE, et al. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods. 2017;16(1):160940691773384. doi:10.1177/1609406917733847.
   Web of Science ®Google Scholar
• Miles M, Huberman M. Qualitative data analysis: an expanded sourcebook. 1st ed. Thousand Oaks (CA): SAGE Publications, Inc.; 1994.
   Google Scholar
• Korstjens I, Moser A. Series: practical guidance to qualitative research. Part 4: trustworthiness and publishing. Eur J Gen Pract. 2018;24(1):120–124. doi:10.1080/13814788.2017.1375092.
   PubMed Web of Science ®Google Scholar
• Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733–742. doi:10.1056/NEJMoa1000678.
   PubMed Web of Science ®Google Scholar
• El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9(3):87–94. doi:10.1016/j.suponc.2011.03.003.
   PubMedGoogle Scholar
• Tellem R, Orion Y, Cialic R, et al. [Not only for cancer Patients - Palliative care for Non-Oncologic patients at the end of life in a Geriatric-Internal medicine department]. Harefuah. 2022;161(5):322–326. PMID: 35606919.
   PubMedGoogle Scholar
• Centers for Medicare & Medicaid Services. State operations manual: appendix PP – guidance to surveyors for long term care. 2017. Available from: https://www.cms.gov/medicare/provider-enrollment-and-certification/guidanceforlawsandregulations/downloads/appendix-pp-state-operations-manual.pdf. Accessed March 18, 2023.
   Google Scholar
• Roth AR, Canedo AR. Introduction to hospice and palliative care. Prim Care. 2019;46(3):287–302. doi:10.1016/j.pop.2019.04.001.
   PubMed Web of Science ®Google Scholar
• Veronese S, Gallo G, Valle A, et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care. 2017;7(2):164–172. doi:10.1136/bmjsPCUare-2014-000788.
   PubMed Web of Science ®Google Scholar
• Evangelista LS, Lombardo D, Malik S, et al. Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. J Card Fail. 2012;18(12):894–899. doi:10.1016/j.cardfail.2012.10.019.
   PubMed Web of Science ®Google Scholar
• Smith TJ, Cassel JB. Cost and non-clinical outcomes of palliative care. J Pain Symptom Manage. 2009;38(1):32–44. doi:10.1016/j.jpainsymman.2009.05.001.
   PubMed Web of Science ®Google Scholar
• Abian MH, Antón Rodríguez C, Noguera A. End of life cost savings in the palliative care unit compared to other services. J Pain Symptom Manage. 2022;64(5):495–503. doi:10.1016/j.jpainsymman.2022.06.016.
   PubMed Web of Science ®Google Scholar
• Kavalieratos D, Corbelli J, Zhang D, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–2114. doi:10.1001/jama.2016.16840.
   PubMed Web of Science ®Google Scholar
• Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016;92(1090):466–470. doi:10.1136/postgradmedj-2015-133368.
   PubMed Web of Science ®Google Scholar
• Dev R, Coulson L, Del Fabbro E, et al. A prospective study of family conferences: Effects of patient presence on emotional expression and end-of-life discussions. J Pain Symptom Manage. 2013;46(4):536–545. doi:10.1016/j.jpainsymman.2012.10.280.
   PubMed Web of Science ®Google Scholar
• Funk LM, Stajduhar KI, Outcalt L. What family caregivers learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets. Palliat Support Care. 2015;13(3):425–433. doi:10.1017/S1478951513001168.
   PubMed Web of Science ®Google Scholar
• Wallace CL. Family communication and decision making at the end of life: a literature review. Palliat Support Care. 2015;13(3):815–825. doi:10.1017/S1478951514000388.
   PubMed Web of Science ®Google Scholar
• Hasdenteufel M, Quintard B. Psychosocial factors affecting the bereavement experience of relatives of palliative-stage cancer patients: a systematic review. BMC Palliat Care. 2022;21(1):212. doi:10.1186/s12904-022-01096-y.
   PubMed Web of Science ®Google Scholar
• Wang H, Kim K, Burr J, et al. Death-talk may predict death acceptance among advanced cancer patients & spouse caregivers. Innov Aging. 2018;2(suppl_1):913–913. doi:10.1093/geroni/igy031.3398.
   Google Scholar
• Lasmarías C, Espinosa J, Martínez-Muñoz M, et al. Estudio sobre necesidades formativas en cuidados paliativos Para atención primaria. FEM. 2013;16(3):159–165. doi:10.4321/S2014-98322013000300007.
   Google Scholar
• García-Salvador I, Chisbert-Alapont E, Antonaya Campos A, et al. Valoración de necesidades formativas de nivel básico en cuidados paliativos en enfermeras de atención primaria en españa. Aten Primaria. 2022;54(5):102344. doi:10.1016/j.aprim.2022.102344.
   PubMedGoogle Scholar
• Marti-Garcia C, Garcia-Caro MP, Schmidt-RioValle J, et al. Formación en cuidados paliativos y efecto en la evaluación emocional de imágenes de muerte. Medicina Paliativa. 2016;23(2):72–78. doi:10.1016/j.medipa.2013.12.007.
   Google Scholar