Experience of relatives of cancer patients in palliative care: an escope review

Authors

DOI:

https://doi.org/10.55892/jrg.v7i14.1118

Keywords:

Family, Oncology, Palliative care, Psychological adaptation, Caregivers

Abstract

This research aimed to analyze the psychological adaptation mechanisms used in the experience of family members of cancer patients in palliative care. Method: This is a scoping review involving the SCOPUS, Web of Science, PubMed and LILACS databases. 33 articles were selected based on the inclusion criteria: publications that addressed coping, without delimiting time or language. The exclusion criteria were: duplicate articles and those that did not answer the guiding question. Results: The analysis of the studies identified important themes related to the invisibility of the caregiver, together with the fact that the majority of family caregivers were female; the main adaptive strategies were avoidance, hope, spirituality and family support. Conclusion: This study highlighted the main coping strategies used by family members of cancer patients in palliative care. Some interventions, such as new instruments to identify the type of coping and a scale of satisfaction between caregivers and the healthcare team, could facilitate care for this population.

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Author Biographies

Mirele Emily Pires da Silva, Universidade Estadual Paulista (Unesp)

Graduanda em Enfermagem pelo Universidade Estadual Paulista Julio de Mesquita Filho – Departamento de Enfermagem.

Leticia Viotto Lima, Universidade Estadual Paulista (Unesp)

Graduanda em Enfermagem pelo Universidade Estadual Paulista Julio de Mesquita Filho – Departamento de Enfermagem.

Elisangela Cristina de Campos, Universidade Estadual Paulista (Unesp)

Graduada em Enfermagem; Mestre(a) em Saúde Coletiva; Doutoranda em Enfermagem.

Guilherme Correa Barbosa, Universidade Estadual Paulista (Unesp)

Graduado em Enfermagem. Mestre(a) em Saúde Mental. Doutor(a) em Saúde Mental.

Milena Temer Jamas, Universidade Estadual Paulista (Unesp)

Graduada em Enfermagem; Mestre(a) em Ciências da Saúde; Doutor(a) em Ciências da Saúde

Anna Paula Ferrari, Universidade Estadual Paulista (Unesp)

Enfermeira graduada pela Universidade Estadual Paulista - "Júlio de Mesquita Filho" UNESP no ano de 2009. Cursou Aprimoramento Profissional em Neonatologia na mesma instituição (2010-2011). Residente Multiprofissional em Saúde da Família pelo Departamento de Enfermagem da FMB - UNESP (2011-2013). Mestre em Enfermagem pelo Programa de Pós-Graduação em Enfermagem - FMB - UNESP (2013-2015). Doutora em Saúde Coletiva pelo Programa de Pós-Graduação em Saúde Coletiva - FMB - UNESP (2015-2019).

*Agradecimentos ao CNPQ pela bolsa do PIBIC.

References

Akpan-Idiok PA, Ehiemere IO, Asuquo EF, Chabo JAU, Osuchukwu EC. Assessment of burden and coping strategies among caregivers of cancer patients in sub-Saharan Africa. World Journal of Clinical Oncology. 2020 Dec 24;11(12):1045–63.

Catt S, Chalmers A, Fallowfield L. Psychosocial and supportive-care needs in high-grade glioma. The Lancet Oncology. 2008 Sep;9(9):884–91.

Choi YS, Hwang SW, Hwang IC, Lee YJ, Kim YS, Kim HM, et al. Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psycho-Oncology. 2015 Jul 7;25(2):217–24.

Dhollande S, Taylor A, Meyer S, Scott M. Conducting integrative reviews: a guide for novice nursing researchers. Journal of Research in Nursing. 2021 Aug;26(5):427–38.

Dionne-Odom JN, Ejem D, Azuero A, Taylor RA, Rocque GB, Turkman Y, et al. Factors Associated with Family Caregivers’ Confidence in Future Surrogate Decision Making for Persons with Cancer. Journal of Palliative Medicine. 2018 Dec;21(12):1705–12.

Feyh JM, Levine EG, Clay K. Close Relatives Find Meaning to Cope With Cancer Diagnosis and Treatment of Family Members. American Journal of Hospice and Palliative Medicine. 2012 Feb 23;29(8):647–54.

Guariglia L, Ieraci S, Villani V, Tanzilli A, Benincasa D, Sperati F, et al. Coping Style in Glioma Patients and Their Caregiver: Evaluation During Disease Trajectory. Frontiers in Neurology [Internet]. 2021 Sep 1 [citado 16 Abr 2023 ];12

Hansson H, Björk M, Santacroce SJ, Raunkiær M. End‐of‐life palliative home care for children with cancer: A qualitative study on parents’ experiences. Scandinavian Journal of Caring Sciences. 2022 Jan 24;

Hasdenteufel M, Quintard B. Psychosocial factors affecting the bereavement experience of relatives of palliative-stage cancer patients: a systematic review. BMC Palliative Care. 2022 Nov 30;21(1).

JR, Poles, K. Cuidados Paliativos: Prática dos Médicos da Estratégia Saúde da Família. REVISTA BRASILEIRA DE EDUCAÇÃO MÉDICA. 2019, 43(3): 62-72. https://doi.org/10.1590/1981-52712015v43n3RB20180172.

Kedia SK, Collins A, Dillon PJ, Akkus C, Ward KD, Jackson BM. Psychosocial interventions for informal caregivers of lung cancer patients: A systematic review. Psycho-Oncology. 2020;29(2):251-62, doi: 10.1002/pon.5271

Kelly B, Edwards P, Synott R, Neil C, Baillie R, Battistutta D. Predictors of bereavement outcome for family carers of cancer patients. Psycho-Oncology. 1999 May;8(3):237–49

Kilic ST, Oz F. Family Caregivers’ Involvement in Caring with Cancer and their Quality of Life. Asian Pacific Journal of Cancer Prevention. 2019 Jun 1;20(6):1735–41, doi: 10.31557/APJCP.2019.20.6.1735

Koenig Kellas J, Castle KM, Johnson AZ, Cohen MZ. Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers. Health Communication. 2019 Oct 30;1–13.

Leonidou C, Giannousi Z. Experiences of caregivers of patients with metastatic cancer: What can we learn from them to better support them? European Journal of Oncology Nursing. 2018 Feb;32:25–32.

Lima L do ES, Santana ME de, Correa Júnior AJS, Vasconcelos EV. Experiences of cancer patients’ family caregivers in palliative care / Juntos resistimos, separados caímos: vivências de familiares cuidadores de pacientes oncológicos em cuidados paliativos. Revista de Pesquisa Cuidado é Fundamental Online. 2019 Jul 1;11(4):931–6.

Maffei B, Arrieira IC de O, Ferreira RA, Cardoso DH. Coping strategies of caregivers of patients receiving palliative home care. Psicologia - Teoria e Prática. 2019;21(3)..

Manor-Binyamini I, Schreiber-Divon M. Listening to Parents of Children With Cancer—Between Life and its end. Journal of Patient Experience. 2022 Jan;9:237437352211065.

Marques TCS, Pucci SHM. Espiritualidade nos cuidados paliativos de pacientes oncológicos. Psicologia USP. 2021;32

Molassiotis A, Wang M. Understanding and Supporting Informal Cancer Caregivers. Current Treatment Options in Oncology. 2022 Mar 14;

Mossin H, Landmark BTh. Being present in hospital when the patient is dying - A grounded theory study of spouses experiences. European Journal of Oncology Nursing. 2011 Dec;15(5):382–9.

Nuwamanya S, Nkola R, Najjuka SM, Nabulo H, Al‐Mamun F, Mamun MA, et al. Depression in Ugandan caregivers of cancer patients: The role of coping strategies and social support. Psycho-Oncology. 2022 Oct 31;

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. British Medical Journal [Internet]. 2021 Mar 29;372(71).

Pereira, VC, Oliveira, PAF. Definição das terapias celulares com receptores de antígenos quiméricos (CAR), receptores de células t (TCR) e linfócitos infiltrantes de tumor (TIL). Perspectivas futuras para a cura do cancer. Braz. J. Hea. Rev., 2019, 2 (2): 1105-1124.

Ramasamy T, Veeraiah S, Balakrishnan K. Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer - A Mixed-method Study. Indian Journal of Palliative Care. 2021 Nov 25;27:503–12.

Reigada C, Ribeiro E, Novellas A. Capacidades familiares para cuidar de enfermos oncológicos paliativos: un estudio cualitativo. Medicina Paliativa. 2015 Oct;22(4):119–26

Renk VE, Buziquia SP, Bordini ASJ. Mulheres cuidadoras em ambiente familiar: a internalização da ética do cuidado. Cad saúde colet [Internet]. Jul 2022;30(3):416–23.

Rocha RCNP, Pereira ER, Silva RMCRA, Medeiros AYBBV de, Refrande SM, Refrande NA. Spiritual needs experienced by the patient’s family caregiver under Oncology palliative care. Revista Brasileira de Enfermagem [Internet]. 2018;71:2635–42.

Roij J, Raijmakers N, Kloover J, Kuip E, Smilde T, Velden L, et al. Dyadic coping and its association with emotional functioning in couples confronted with advanced cancer: Results of the multicenter observational eQuiPe study. Psycho-Oncology. 2022 May 23;

Rumpold T, Schur S, Amering M, Ebert-Vogel A, Kirchheiner K, Masel E, et al. Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients. Psycho-Oncology. 2016 Aug 1;26(5):672–8.

Santeiro TV, Yoshida EMP, Peixoto EM, Rocha GMA da, Zanini DS. Diferenças conceituais e empíricas entre eficácia adaptativa e coping. Estudos Interdisciplinares em Psicologia. 2016 Jul 7;7(1):02.

Schiavon AB, Muniz RM, Azevedo NA de, Cardoso DH, Matos MR, Arrieira ICO. Profissional da saúde frente a situação de ter um familiar em cuidados paliativos por câncer. Revista Gaúcha de Enfermagem. 2016;37(1).

Sherborne V, Seymour J, Taylor B, Tod A. What are the psychological effects of mesothelioma on patients and their carers? A scoping review. Psycho-Oncology. 2020 Jul 13;29(10):1464–73.

Sherman DW, McGuire DB, Free D, Cheon JY. A Pilot Study of the Experience of Family Caregivers of Patients With Advanced Pancreatic Cancer Using a Mixed Methods Approach. Journal of Pain and Symptom Management. 2014 Sep;48(3):385-399.e2.

Silva Amina Regina, Petry Stéfany. AS EXPERIÊNCIAS DE CUIDADORES INFORMAIS DE PACIENTES EM TRATAMENTO ONCOLÓGICO PALIATIVO: UMA REVISÃO INTEGRATIVA. Ciênc. cuid. saúde [Internet]. 2021 [citado 2024 Abr 11] ; 20: e55978. Disponível em: http://www.revenf.bvs.br/scielo.php?script=sci_arttext&pid=S1677-38612021000100301&lng=pt. Epub 03-Set-2021. http://dx.doi.org/10.4025/cienccuidsaude.v20i0.55978.

Silva CP, Santos ATC, Silva RP, Andrade JD, Almeida LM. Significado dos Cuidados Paliativos para a Qualidade da Sobrevivência do Paciente Oncológico. Revista Brasileira de Cancerologia 201662(3): 225-235.

Ullrich A, Eicken S, Coym A, Hlawatsch C, Bokemeyer C, Oechsle K. Gender-specific problems and needs of family caregivers during specialist inpatient palliative care: a qualitative study on experiences of family caregivers and healthcare professionals. Ann Palliat Med. 2021 Aug;10(8):8571-8583.

Verberne LM, Kars MC, Schouten-van Meeteren AYN, van den Bergh EMM, Bosman DK, Colenbrander DA, et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European Journal of Pediatrics. 2019 May 19;178(7):1075–85.

Published

2024-05-21

How to Cite

SILVA, M. E. P. da; LIMA, L. V.; CAMPOS, E. C. de; BARBOSA, G. C.; JAMAS, M. T.; FERRARI, A. P. Experience of relatives of cancer patients in palliative care: an escope review. JRG Journal of Academic Studies, Brasil, São Paulo, v. 7, n. 14, p. e141118, 2024. DOI: 10.55892/jrg.v7i14.1118. Disponível em: https://revistajrg.com/index.php/jrg/article/view/1118. Acesso em: 22 jul. 2024.

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