i
Dear community of the Chilean Journal of Nursing, we inform you that we continue to receive articles for publication this 2024,
with a continuous publication system on Nursing and Health Sciences topics;
and an average publication time of nine weeks from article submission to publication. (GUIDELINES FOR THE AUTOR)
RESIGNIFYING END OF LIFE CARE, EXPERIENCES OF FAMILY MEMBERS IN PALLIATIVE CARE
Authors
-
Carola Montecino
Escuela de Enfermería Universidad de las Américas
https://orcid.org/0000-0002-5665-6303
-
Paula Vega Vega
Escuela de Enfermería Pontificia Universidad Católica de Chile
https://orcid.org/0000-0001-5635-3030
-
Rina González Rodríguez
Escuela de Enfermería Pontificia Universidad Católica de Chile
https://orcid.org/0000-0002-6167-8523
Abstract
Objective: To unveil the experience lived by informal caregivers during the care of their relative in advanced stage of cancer at home that led them to hospitalize them in a palliative care clinic. Methods: The research was conducted with phenomenological qualitative methodology based on Husserl in the constructivist paradigm, the testimonies of ten participants who lived the experience of hospitalizing their adult relative in a palliative care clinic in Santiago de Chile hospice type during the year 2017, after having cared for them at home were collected. The information was obtained through audio-recorded in-depth interviews, transcribed verbatim, protecting confidentiality. Discourse analysis based on Helen Streubert was performed. Authorization was obtained from the institution and the corresponding ethics committee. Results: The study revealed the following units of meaning; the participants, after assuming the responsibility of caring for their relative at home, began to experience exhaustion. This triggered a crisis in caregiving, which led to the decision to hospitalize them. Once hospitalized in the clinic, the caregivers felt supported by the professionals, this allowed them to resignify the experience, feeling that they were returning to care for their family member again. Conclusions: It was revealed that home care requires continuous accompaniment, with 24-hour attention by the Palliative Care team, to reduce the stress of disease progression and promote peace of mind for family members and caregivers.
Keywords:
Hospitalization, Palliative Care, Caregivers, OverloadReferences
World Health Organization (WHO). Palliative Care [Internet]. Geneva. Switzerland; WHO; c2022. [citado 15 de julio de 2022]. Disponible en: https://www.who.int/health-topics/palliative-care
World Health Organization (WHO). Model List of Essential Medicines. WHO. Geneva. Switzerland; c2022. Disponible en: https://www.who.int/groups/expert-committee-on-selection-and-use-of-essential-medicines/essential-medicines-lists
Ministerio de Salud de Chile. Departamento de prevención y control de enfermedades. Manual para el equipo de salud de atención primaria, como cuidar a la persona con cáncer avanzado en el nivel primario de atención. Santiago, Chile; 2011.
Pastrana T, De Lima L, Wenk R, Eisenchlas J, Monti C, Rocafort J, Centeno C. Atlas de Cuidados Paliativos en Latinoamérica [Internet]. Houston: IAHPC Press; 2020 [citado 15 de julio de 2022]. Disponible en: https://dadun.unav.edu/handle/10171/60351
Ministerio de Salud. Sobrecarga del cuidador en tiempos de COVID, qué es y cómo cuidarse. Hospital Digital [Internet]. 2020 Jul [citado 15 de julio de 2022]:20 p. Disponible en: http://www.senama.gob.cl/storage/docs/CAPACITACION_SOBRECARGA_DE_CUIDADOR_QUE_ES_Y_COMO_PREVENIRLO_16_de_junio%281%29.pdf
Streubert H, Carpenter D. Designing data generation and management strategies. In, Streubert H, Carpenter D, Qualitative research in Nursing: Advancing the humanistic imperative. 5th ed. Philadelphia: Lippincott Williams & Wilkins; 2011. 501 p.
Guba EG, Lincoln YS. Fourth generation evaluation. 1th ed. Newbury Park: California: Sage Publications; 1989. 294 p.
Emanuel, Ezekiel. "¿Qué hace que la investigación clínica sea ética? Siete requisitos éticos." Investigación en sujetos humanos: experiencia internacional. Santiago de Chile: Programa Regional de Bioética OPS/OMS. [Internet]. 1999 [citado 15 de julio de 2022] 33-46. Disponible en: https://vri.umayor.cl/images/Pautas-evaluacion-etica-Ezequiel-Emanuel.pdf
Engbers RA. Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review. Am J Hosp Palliat Care [ Internet]. 2019 Dec [citado 15 de julio de 2022];36(12):1114-1123. Disponible en: https://doi.org/10.1177/1049909119842365
Veloso VI, Tripodoro VA. Caregivers burden in palliative care patients: a problem to tackle. Curr Opin Support Palliat Care [Internert]. 2016 Dec [citado 15 de julio de 2022];10(4):330-335. Disponible en: https://doi.org/10.1097/SPC.0000000000000239
Sarmento VP, Gysels M, Higginson IJ, Gomes B. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care [ Internet]. 2017 Dec [citado 15 de julio de 2022];7(4):0. Disponible en: https://doi.org/10.1136/bmjspcare-2016-001141.
Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer [ Internet]. 2015 May [citado 15 de julio de 2022];121(9):1513-9. Disponible en: https://doi.org/10.1002/cncr.29223
Oechsle K. Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature. Med Sci (Basel) [ Internet]. 2019 Mar [citado 15 de julio de 2022];12;7(3). Disponible en: https://doi.org/10.3390/medsci7030043
Jo S, Brazil K, Lohfeld L, Willison K. Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliat Support Care [ Internet]. 2007 Mar [citado 15 de julio de 2022];5(1):11-17. Disponible en: http://doi.org/10.1017/S1478951507070034
Uribe C, Amado A, Rueda AM, Mantilla L. Barreras de acceso a servicios de cuidados paliativos percibidas por pacientes con cáncer gástrico, sus cuidadores y médicos en Santander, Colombia. Ciênc. saúde coletiva [ Internet]. 2019 Oct [citado 15 de julio de 2022];24(5):1597-1607. Disponible en: https://doi.org/10.1590/1413-81232018245.04432019
Peeranuch L, Chongkham-ang S. The experience of caregivers living with cancer patients: A systematic review and Meta-Synthesis. J Pers Med [Internet]. 2015 Nov [citado 15 de julio de 2022];5(4):406-39. Disponible en: http://doi.org/10.3390/jpm5040406
Mohammed S, Swami N, Pope A, Rodin G, Hannon B, Nissim R, Hales S, Zimmermann C. "I didn't want to be in charge and yet I was": Bereaved caregivers' accounts of providing home care for family members with advanced cancer. Psychooncology [ Internet]. 2018 Apr [citado 15 de julio de 2022]; 27(4):1229-1236. Disponible en: https://doi.org/10.1002/pon.4657.
Ellis J, Lloyd WM, Wagland R, Bailey C, Molassiotis A. Coping with and factors impacting upon the experience of lung cancer in patients and primary carers. Eur J Cancer Care [Internet].2013 Jan [citado 15 de julio de 2022];22(1):97-106. Disponible en: http://doi.org/10.1111/ecc.12003
Waldrop DP, Meeker MA, Keer C, Skretny J, Tangeman J, Milch R. The Nature and Timing of Family- Provider Communication in Late- Stage Cancer: A Qualitative study of caregivers’ experiences. J Pain Symptom Manage [Internet]. 2012 Feb [citado 15 de julio de 2022];43(2):182-94. Disponible en: doi: http://doi.org/10.1016/j.jpainsymman.2011.04.017
Rocha EM, Rocha RAPL, Machado ME, Souza A de, Schuch FB. Sobrecarga do cuidador de pacientes oncológicos em cuidados paliativos. Rev enferm UFPE on line [ Internet] 2020 Mar [citado 15 de julio de 2022];14:e244165. Disponible en: doi https://doi.org/10.5205/1981-8963.2020.244165
Toffoletto MC, Reynaldos Grandón KL. Determinantes sociales de salud, sobrecarga familiar y calidad de vida de cuidadores familiares de pacientes oncológicos en cuidados paliativos. Rev. salud pública [Internet]. 2019 Ene [citado 15 de julio de 2022];21(2):154-60. Disponible en: https://revistas.unal.edu.co/index.php/revsaludpublica/article/view/76845
Chi NC, Demiris G. Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review. Am J Hosp Palliat Care [Internet]. 2017 Jun [citado 15 de julio de 2022] ;34(5):470-485. Disponible en: doi:10.1177/1049909116637359
Moreira de Souza R, Turrini RNT. Paciente oncológico terminal: Sobrecarga del cuidador. Enferm. Glob [Internet]. 2011 Abr [citado 15 de julio de 2022];10)(22):0-0. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1695-61412011000200013&lng=es
Delalibera M, Barbosa A, Leal I. Circunstâncias e consequências do cuidar: Caracterización del cuidador o familiar em cuidados paliativos. Ciênc. saúde coletiva [Internet]. 2018 Abr [citado 15 de julio de 2022];23(4):1105-1117. Disponible en: https://doi.org/10.1590/1413-81232018234.12902016
Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol. [Internet] 2020 Mar [citado 15 de julio de 2022]; 20;38(9):926-936. Disponible en: https://doi.org/10.1200/JCO.19.00018
Ullrich A, Ascherfeld L, Marx G. et al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care [ Internet]. 2017 Mar [citado 15 de julio de 2022];16(31). Disponible en: https://doi.org/10.1186/s12904-017-0206-z
Phongtankuel V, Paustian S, Reid MC, Finley A, Martin A, Delfs J, Baughn R, Adelman RD. Events Leading to Hospital-Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers' Perspectives. J Palliat Med [ Internet]. 2017 Mar [citado 15 de julio de 2022];20(3):260-265. Disponible en: https://doi.org/10.1089/jpm.2015.0550
LeSeure P, Chongkham-Ang S. The Experience of Caregivers Living with Cancer Patients: A Systematic Review and Meta-Synthesis. J Pers Med [ Internet]. 2015 Nov [citado 15 de julio de 2022];5(4):406-439. Disponible en: https://doi.org/10.3390/jpm5040406.
Wittenberg-Lyles E, Demiris G, Oliver DP, Washington K, Burt S, Shaunfield S. Stress Variances Among Informal Hospice Caregivers. Qual Health Res [Internet]. 2012 Aug [citado 15 de julio de 2022];22(8):114-1125. Disponible en: http://doi.org/10.1177/1049732312448543
Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Family Members' Evaluation of Hospice Care: What Factors Influence Overall Satisfaction with Services? J Pain Symptom Manage.2008 Apr [citado 15 de julio de 2022];35(4):365-371. Disponible en: https://doi.org/10.1016/j.jpainsymman.2007.12.004.
Ong J, Brennsteiner A, Chow E, Hebert RS. Correlates of Family Satisfaction with Hospice Care: General Inpatient Hospice Care versus Routine Home Hospice Care. J Palliat Med [Internet]. 2016 Jan [citado 15 de julio de 2022];19(1):97-100. Disponible en: https://doi.org/10.1089/jpm.2015.0055.
Bajwah S, Oluyase AO, Yi D, et al. The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers. Cochrane Database Syst Rev [ Internet]. 2020 Sep [citado 15 de julio de 2022];9(9):CD012780. Disponible en: https://doi.org/10.1002/14651858.CD012780.pub2
Bainbridge D, Seow H. Palliative Care Experience in the Last 3 Months of Life: A Quantitative Comparison of Care Provided in Residential Hospices, Hospitals, and the Home From the Perspectives of Bereaved Caregivers. Am J Hosp Palliat Care [Internet]. 2018 Mar [citado 15 de julio de 2022]; 35(3):456-463. Disponible en: https://doi.org/10.1177/1049909117713497
Parast L, Tolpadi AA, Teno JM, Elliott MN, Price RA. Hospice Care Experiences Among Cancer Patients and Their Caregivers. J Gen Intern Med [ Internet]. 2021 Apr [citado 15 de julio de 2022];36(4):961-969. Disponible en: https://doi.org/10.1007/s11606-020-06490-x.
Luxardo N, Brage E, Alvarado C. An examination of advanced cancer caregivers’ support provided by staff interventions at hospices in Argentina. Ecancermedicalscience [Internet]. 2012 Nov [citado 15 de julio de 2022];6:281. Disponible en: http://doi.org/10.3332/ecancer.2012.281
Waldrop DP, Meeker MA. Final decisions: how hospice enrollment prompts meaningful choices about life closure. Palliat Support Care [ Internet]. 2014 Jun [citado 15 de julio de 2022];12(3):211-21. Disponible en: https://doi.org/10.1017/S1478951512001113
Kang J, Shin DW, Choi JE, Sanjo M, Yoo SJ, Kim HK, Oh MS, Kwen HS, Choi HY, Yoon WH. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology [ Internet]. 2014 Jun [citado 15 de julio de 2022];3(71). Disponible en: http://doi.org/10.1002/pon.3033
Bainbridge D, Hsien S. Palliative Care Experience in the Last 3 Months of Life: A Quantitative Comparison of Care Provided in Residential Hospices, Hospitals, and the Home From the Perspectives of Bereaved Caregivers. Am J Hosp Palliat Care [Internet]. 2018 Mar [citado 15 de julio de 2022];35(3):456–463. Disponible en: https://doi.org/10.1177/1049909117713497
Senden C, Vandecasteele T, Vandenberghe E, Versluys K, Piers R, Grypdonck M, Van Den Noortgate N. The interaction between lived experiences of older patients and their family caregivers confronted with a cancer diagnosis and treatment: a qualitative study. Int J Nurs Stud [Internet]. 2015 Jan [citado 15 de julio de 2022];52(1):197-206. Disponible en: https://doi.org/10.1016/j.ijnurstu.2014.07.012.
Hannon B, Swami N, Rodin G, Pope A, Zimmermann C. Experiences of patients and caregivers with early palliative care: A qualitative study. Palliat Med [ Internet]. 2017 Jan [citado 15 de julio de 2022];31(1):72-81. Disponible en: https://doi.org/10.1177/0269216316649126
El-Jawahri A, Greer JA, Pirl WF, et al. Effects of Early Integrated Palliative Care on Caregivers of Patients with Lung and Gastrointestinal Cancer: A Randomized Clinical Trial. Oncologist [Internet]. 2017 Dec [citado 15 de julio de 2022] ;22(12):1528-1534. Disponible en: https://doi.org/10.1634/theoncologist.2017-0227
Alligood MR, Marriner AT. Modelos y Teorías de Enfermería. Elsevier Barcelona, 2011 (7ed.), 797.
Twitter
Instagram
