Uncertainty Towards the Disease of Family Caregivers of Patients in Palliative Care: A Scoping Review

Mauricio Arias-Rojas, Sonia Carreño-Moreno, Jennifer Rojas-Reyes

Resumen


Incertidumbre ante la enfermedad de cuidadores familiares de pacientes en cuidados paliativos: scoping review

Incerteza dos familiares e cuidadores perante a doença de pacientes em cuidados paliativos: scoping review

Objetivo: conocer el desarrollo de la evidencia científica sobre la incertidumbre ante la enfermedad de cuidadores familiares de pacientes en cuidados paliativos.

Materiales y métodos: revisión descriptiva tipo scoping review. Se realizó una búsqueda en las bases de datos Embase, ScienceDirect, Medline, Academic Search Complete y Scopus, en el periodo 2000-2019. Se usaron los términos MeSH uncertainty, paliative care, end of life, nursing y caregiver. Luego del proceso de crítica, se seleccionaron cincuenta artículos.

Resultados: emergieron cinco núcleos temáticos: caracterización de la incertidumbre en el cuidador, factores influyentes en la incertidumbre, recursos para el manejo de la incertidumbre, evaluación de la incertidumbre y terapéuticas e intervenciones para abordar la incertidumbre. La mayor escala de evidencia se encuentra en la caracterización de la incertidumbre en el cuidador, y los vacíos orientan el desarrollo de intervenciones de enfermería sobre la incertidumbre de los cuidadores de personas en cuidado paliativo.

Conclusiones: si bien existe una amplia exploración de los factores que influyen en la incertidumbre ante la enfermedad del cuidador, la evidencia sobre las intervenciones que ayuden a disminuir la incertidumbre ante la enfermedad es aún escasa.

Para citar este artículo / To reference this article / Para citar este artigo

Arias-Rojas M, Carreño-Moreno S, Rojas-Reyes J. Uncertainty towards the disease of family caregivers of patients in palliative care: A scoping review. Aquichan. 2020;20(3):e2034. DOI: https://doi.org/10.5294/aqui.2020.20.3.4

Recibido: 17/12/2019

Aceptado: 27/04/2020

Publicado: 07/09/2020


Palabras clave


Incertidumbre; enfermería; cuidadores; cuidados paliativos; cuidados paliativos al final de la vida.

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Referencias


World Health Organization. Noncommunicable diseases country profiles, 2018. Ginebra: World Health Organization; 2018. [Citado 2019 dic. 20]. Disponible en: https://apps.who.int/iris/handle/10665/274512

World Health Organization. Definition of palliative care. Ginebra: World Health Organization; 2015. [Citado 2019 dic. 20]. Disponible en: http://www.who.int/cancer/palliative/definition/en/#

Garcia-Rueda N, Carvajal VA, Saracibar-Razquin M, Arantzamendi SM. The experience of living with advanced-stage cancer: A thematic synthesis of the literature. Eur J Cancer Care. 2016;25(3):551-69. DOI: https://doi.org/10.1111/ecc.12523

Arias-Rojas M, Carreño-Moreno S, Chaparro L. Incertidumbre ante la enfermedad crónica. Revisión integrativa. Rev Latinoam Bioética. 2019;19(36-1):91-104. DOI: https://doi.org/10.18359/rlbi.3575

Meleis AI, Sawyer LM, Im EO, Hilfinger Messias DK, Schumacher K. Experiencing transitions: An emerging middle-range theory. Adv Nurs Sci. 2000;23(5):12-28. DOI: https://doi.org/10.1097/00012272-200009000-00006

Carreño MS, Chaparro DL, Blanco SP. Cuidador familiar del niño con cáncer: un rol en transición. Rev Latinoam Bioética. 2017;17(33-2):18-30. DOI: https://doi.org/10.18359/rlbi.2781

Moreno CS, Palomino MP, Moral FL, Frías OA, Del Pino CR. Problemas en el proceso de adaptación a los cambios en personas cuidadoras familiares de mayores con demencia. Gac Sanit. 2016;30(7):201-7. DOI: https://doi.org/10.1016/j.gaceta.2016.02.004

Holm M, Årestedt K, Öhlen J, Alvariza A. Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care. Death Stud. 2019(8);23:1-9. DOI: https://doi.org/10.1080/07481187.2019.1586797

Gotze H, Brahler E, Gansera L, Schnabel A, Gottschalk-Fleischer A, Kohler N. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care. 2018;27(9)(2):e12606. DOI: https://doi.org/10.1111/ecc.12606

Domínguez JA, Ruíz M, Gómez I, Gallego E, Valero J, Izquierdo MT. Ansiedad y depresión en cuidadores de pacientes dependientes. Semergen. 2012;38(10):16-23. DOI: https://doi.org/10.1016/j.semerg.2011.05.013

Clayton M, Dean M, Mishel M. Theories of uncertainty in illness. En: Smith MJ, Liehr P, editoras. Middle range theory for nursing. 4.ª ed. Nueva York: Springer Publishing Company; 2018. p. 49-82.

Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015;13(12)(3):1416. DOI: https://doi.org/10.1097/XEB.0000000000000050

Joanna Briggs Institute. Levels of evidence. South Australia: The University of Adelaide; 2013 [Citado 2019 dic. 10]. Disponible en: https://joannabriggs.org/sites/default/files/2019-05/JBI-Levels-of-evidence_2014_0.pdf

Critical Appraisal Skills Programme Español (CASPe). Instrumentos para lectura crítica: herramientas para análisis de reportes de investigación. Alicante, España: CASPe; 2016. [Citado 2019 dic. 10]. Disponible en: http://www.redcaspe.org/herramientas/instrumentos

Northouse LL, Mood DW, Montie JE, Sandler HM, Forman JD, Hussain M, et al. Living with prostate cancer: Patients’ and spouses’ psychosocial status and quality of life. J Clin Oncol. 2007;25(15):4171-7. DOI: https://doi.org/10.1200/JCO.2006.09.6503

Arias-Rojas M, Carreño–Moreno S, Posada C. Incerteza dos cuidadores familiares na doença de pacientes sob cuidados paliativos e fatores associados. Rev Latino-Am Enferm. 2019;27(16):e3200. DOI: https://doi.org/10.1590/1518-8345.3185.3200

Kimbell B, Boyd K, Kendall M, Iredale J, Murray SA. Managing uncertainty in advanced liver disease: A qualitative, multiperspective, serial interview study. BMJ Open. 2015;5(17):e009241.DOI: http://doi.org/10.1136/bmjopen-2015-009241

Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. J Palliat Med. 2004;7(18):19-25. DOI: https://doi.org/10.1089/109662104322737214

Wang T, Molassiotis A, Chung BPM, Tan J-Y. Unmet care needs of advanced cancer patients and their informal caregivers: A systematic review. BMC Palliat Care. 2018;17(1):96. DOI: https://doi.org/10.1186/s12904-018-0346-9

Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9:17. DOI: https://doi.org/10.1186/1472-684X-9-17

Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane database Syst Rev. 2011;(21):CD007617. DOI: https://doi.org/10.1002/14651858.CD007617.pub2

Zavagli V, Raccichini M, Ercolani G, Franchini L, Varani S, Pannuti R. Care for carers: An investigation on family caregivers’ needs, tasks, and experiences. Transl Med UniSa. 2019;19(22):54-9. Disponible en: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581485/

Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15(23):1-18. DOI: https://doi.org/10.1080/0742-969x.2000.11882959

Cortijo PX, Ortíz AG, Cibrián LT. Comparación psicoafectiva entre cuidadores principales de pacientes psiquiátricos y con cáncer en estadios avanzados de la enfermedad. Rev Acta Médica del Cent. 2019;13(24):93-100. Disponible en: http://www.revactamedicacentro.sld.cu/index.php/amc/article/view/980/1243

Rabow MW, Hauser JM, Adams J. Perspectives on care at the close of life. Supporting family caregivers at the end of life: “They don’t know what they don’t know.” J Am Med Assoc. 2004;291(25):483-91. DOI: https://doi.org/10.1001/jama.291.4.483

Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their careers in the community. BMJ Br Med J. 2002;325(7370):929-32. DOI: https://doi.org/10.1136/bmj.325.7370.929

Collins A, McLachlan SA, Philip J. How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer. Palliat Med. 2018;32(27):861-9.DOI: https://doi.org/10.1177/0269216317746584

Gardner DS. Cancer in a dyadic context: Older couples’ negotiation of ambiguity and search for meaning at the end of life. J Soc Work End Life Palliat Care. 2008;4(28):135-59.DOI: https://doi.org/10.1080/15524250802353959

Garcia-Toyos N, Escudero-Carretero MJ, Sanz-Amores R, Guerra-De Hoyos JA, Melchor-Rodriguez JM, Tamayo-Velazquez MI. Preferences of caregivers and patients regarding opioid analgesic use in terminal care. Pain Med. 2014;15(29):577-87. DOI: https://doi.org/10.1111/pme.12376

Wennman-Larsen A, Tishelman C. Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci. 2002;16(3):240-7. DOI: https://doi.org/10.1046/j.1471-6712.2002.00091.x

Hasson F, Kernohan WG, McLaughlin M, Waldron M, McLaughlin D, Chambers H, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med. 2010;24(7):731-6. DOI: https://doi.org/10.1177/0269216310371414

McIlfatrick S. Assessing palliative care needs: Views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007;57(1):77-86. DOI: https://doi.org/10.1111/j.1365-2648.2006.04062.x

Hanratty B, Holmes L, Lowson E, Grande G, Addington-Hall J, Payne S, et al. Older adults’ experiences of transitions between care settings at the end of life in England: A qualitative interview study. J Pain Symptom Manage. 2012;44(1):74-83. DOI: https://doi.org/10.1016/j.jpainsymman.2011.08.006

Printz C. Cancer caregivers still have many unmet needs. Cancer. 2011;117(7):1331. DOI: https://doi.org/10.1002/cncr.26075

Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, et al. Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727-37. DOI: https://doi.org/10.1016/s0885-3924(01)00334-7

Lee HTS, Melia KM, Yao CA, Lin CJ, Chiu TY, Hu WY. Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: Family experiences and needs. Am J Hosp Palliat Care. 2014;31(6):628-35 DOI: https://doi.org/10.1177/1049909113499603

Arora NK, Finney Rutten LJ, Gustafson DH, Moser R, Hawkins RP. Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer. Psychooncology. 2007;16(5):474-86. DOI: https://doi.org/10.1002/pon.1084

Cardoso F, Harbeck N, Mertz S, Fenech D. Evolving psychosocial, emotional, functional, and support needs of women with advanced breast cancer: Results from the Count Us, Know Us, Join Us and Here & Now surveys. Breast. 2016;28:5-12. DOI: https://doi.org/10.1016/j.breast.2016.04.004

Tallman K, Greenwald R, Reidenouer A, Pantel L. Living with advanced illness: Longitudinal study of patient, family, and caregiver needs. Perm J. 2012;16(3):28-35. DOI: https://doi.org/10.7812/tpp/12-029

Fortier MA, Batista ML, Wahi A, Kain A, Strom S, Sender LS. Illness uncertainty and quality of life in children with cancer. J Pediatr Hematol Oncol. 2013;35(5):366-70. DOI: https://doi.org/10.1097/MPH.0b013e318290cfdb

Buchbinder DK, Fortier MA, Osann K, Wilford J, Shen V, Torno L, et al. Quality of life among parents of adolescent and young adult brain tumor survivors. J Pediatr Hematol Oncol. 2017;39(8):579-84. DOI: https://doi.org/10.1097/MPH.0000000000000947

Kershaw TS, Mood DW, Newth G, Ronis DL, Sanda MG, Vaishampayan U, et al. Longitudinal analysis of a model to predict quality of life in prostate cancer patients and their spouses. Ann Behav Med. 2008;36(2):117-28. DOI: https://doi.org/10.1007/s12160-008-9058-3

Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M, et al. “I’ll be in a safe place”: A qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open. 2016;6(11):e012134. DOI: https://doi.org/10.1136/bmjopen-2016-012134

Teno JM, Casey VA, Welch LC, Edgman-Levitan S. Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. J Pain Symptom Manage. 2001;22(3):738-51. DOI: https://doi.org/10.1016/s0885-3924(01)00335-9

Sparla A, Flach-Vorgang S, Villalobos M, Krug K, Kamradt M, Coulibaly K, et al. Individual difficulties and resources: A qualitative analysis in patients with advanced lung cancer and their relatives. Patient Prefer Adherence. 2016;10:2021-9. DOI: https://doi.org/10.2147/PPA.S110667

Collier A, Breaden K, Phillips JL, Agar M, Litster C, Currow DC. Caregivers’ perspectives on the use of long term oxygen therapy for the treatment of refractory breathlessness: A qualitative study. J Pain Symptom Manage. 2017;53(1):33-39. DOI: https://doi.org/10.1016/j.jpainsymman.2016.06.007

Vahidi M, Mahdavi N, Asghari E, Ebrahimi H, Eivazi Ziaei J, Hosseinzadeh M, et al. Other side of breast cancer: Factors associated with caregiver burden. Asian Nurs Res. 2016;10(3):201-6. DOI: https://doi.org/10.1016/j.anr.2016.06.002

Borneman T, Sun V, Williams AC, Fujinami R, Del Ferraro C, Burhenn PS, et al. Support for patients and family caregivers in lung cancer: Educational components of an interdisciplinary palliative care intervention. J Hosp Palliat Nurs. 2015;17(4):309-18. DOI: https://doi.org/10.1097/NJH.0000000000000165

Hudson PL, Trauer T, Lobb E, Zordan R, Williams A, Quinn K, et al. Supporting family caregivers of hospitalised palliative care patients: A psychoeducational group intervention. BMJ Support Palliat Care. 2012;2(2):115-20. DOI: https://doi.org/10.1136/bmjspcare-2011-000131

Waldrop DP, Kramer BJ, Skretny JA, Milch RA, Finn W. Final transitions: Family caregiving at the end of life. J Palliat Med. 2005;8(3):623-38. DOI: https://doi.org/10.1089/jpm.2005.8.623

Germino BB, Mishel MH, Belyea M, Harris L, Ware A, Mohler J. Uncertainty in prostate cancer. Ethnic and family patterns. Cancer Pract. 1998;6(2):107-13. DOI: https://doi.org/10.1046/j.1523-5394.1998.1998006107.x

Ling SF, Chen ML, Li CY, Chang WC, Shen WC, Tang ST. Trajectory and influencing factors of depressive symptoms in family caregivers before and after the death of terminally ill patients with cancer. Oncol Nurs Forum. 2013;40(1):E32-40. DOI: https://doi.org/10.1188/13.ONF.E32-E40

Richardson A, Wagland R, Foster R, Symons J, Davis C, Boyland L, et al. Uncertainty and anxiety in the cancer of unknown primary patient journey: A multiperspective qualitative study. BMJ Support Palliat Care. 2015;5(4):366-72. DOI: https://doi.org/10.1136/bmjspcare-2013-000482

Aoun SM, Deas K, Howting D, Lee G. Exploring the support needs of family caregivers of patients with brain cancer using the CSNAT: A comparative study with other cancer groups. PLoS One. 2015;10(12):e0145106. DOI: https://doi.org/10.1371/journal.pone.0145106

Kendall M, Carduff E, Lloyd A, Kimbell B, Cavers D, Buckingham S, et al. Different experiences and goals in different advanced diseases: Comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manage. 2015;50(2):216-24. DOI: https://doi.org/10.1016/j.jpainsymman.2015.02.017

Butow PN, Price MA, Bell ML, Webb PM, DeFazio A, Friedlander M. Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol. 2014;132(3):690-7. DOI: https://doi.org/10.1016/j.ygyno.2014.01.002

Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Caulkin R, et al. Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle. Palliat Med. 2015;29(9):797-807. DOI: https://doi.org/10.1177/0269216315578990

Wordingham SE, McIlvennan CK, Dionne-Odom JN, Swetz KM. Complex care options for patients with advanced heart failure approaching end of life. Curr Heart Fail Rep. 2016;13(1):20-9. DOI: https://doi.org/10.1007/s11897-016-0282-z

Kang Y. Effect of uncertainty on depression in patients with newly diagnosed atrial fibrillation. Prog Cardiovasc Nurs. 2006;21(2):83-8. DOI: https://doi.org/10.1111/j.0889-7204.2006.04810.x

Daneault S, Lussier V, Mongeau S, Yelle L, Cote A, Sicotte C, et al. Ultimate journey of the terminally ill: Ways and pathways of hope. Can Fam Physician. 2016;62(8):648-56. Disponible en: https://pubmed.ncbi.nlm.nih.gov/27521394-ultimate-journey-of-the-terminally-ill-ways-and-pathways-of-hope/

Bjork M, Sundler AJ, Hallstrom I, Hammarlund K. Like being covered in a wet and dark blanket: Parents’ lived experiences of losing a child to cancer. Eur J Oncol Nurs. 2016;25:40-5.DOI: https://doi.org/10.1016/j.ejon.2016.08.007

Northouse L, Kershaw T, Mood D, Schafenacker A. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology. 2005;14(6):478-91. DOI: https://doi.org/10.1002/pon.871




DOI: https://doi.org/10.5294/aqui.2020.20.3.4

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