EXPERIENCES AND STRATEGIES OF COPING WITH FAMILY MEMBERS WITH CHILDREN IN PEDIATRIC PALLIATIVE CARE: A LITERATURE REVIEW

Authors

DOI:

https://doi.org/10.47820/recima21.v4i2.2762

Keywords:

pediatrics, Palliative Care aims to prevent, identify and treat children

Abstract

In pediatrics, Palliative Care aims to prevent, identify and treat children suffering from chronic, progressive and advanced diseases. The aim of this study is to highlight the experiences and coping strategies used by family members of children and adolescents in palliative care. This is an integrative review of the literature. The main databases used were Web of Science, Scientific Electronic Library Online (SciELO), PubMed, Latin American and Caribbean Literature in Health Sciences (LILACS) and Scopus. Using as key words for the search the descriptors "Palliative Care", "Child", "Family" and the Boolean operator AND. 12 scientific articles, written in Portuguese, English and Spanish from 2017 to 2022, were selected. From the analysis and discussion of the articles selected for this study, it was evident that the process of caring for severely ill children and adolescents who are under palliative care is permeated by the personal, family, professional, organizational and systemic dimensions. When it comes to a child with a life-threatening disease, it is a challenge for both parents and health professionals, because the event is controversial to the "script" of human existence.

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Author Biographies

  • Gabrielly dos Santos Mazini

    Graduanda em Psicologia na Universidade Federal do Triângulo Mineiro, Brasil.

  • Maria Zilda Domingos da Silva

     Graduanda em Enfermagem na Universidade Federal do Triângulo Mineiro.

  • Nathalia Capolis de Castro

    Graduada em Fisioterapia pela Universidade de Uberaba, Brasil.

  • Natália Silva Garcia

    Graduanda em Terapia Ocupacional na Universidade Federal do Triângulo Mineiro, Brasil.

  • Nadia Karolina Gonçalves Oliveira

    Graduanda em Enfermagem na Universidade Federal do Triângulo Mineiro, Brasil.

  • Gabriela Ataide Gonçalves

    Graduanda em Enfermagem na Universidade Federal do Triângulo Mineiro, Brasil.

  • Rayane Aparecida Gomes Soares

    Graduanda em Terapia Ocupacional na Universidade Federal do Triângulo Mineiro, Brasil.

  • Jussara Silva Lima

    Médica Docente na Universidade Federal do Triângulo Mineiro, Brasil.

References

Alliance, W. P. C., & World Health Organization. (2014). Global atlas of palliative care at the end of life. London:World wide Palliative Care Alliance.

Alves, S., Fontaine, A., & Grande, C. (2016). Resiliência Familiar no Contexto dos Cuidados Paliativos Pediátricos. Actas do 3° Congresso da Ordem dos Psicólogos Portugueses, 1098-1105.

Aoun, S. M., Stegmann, R., Deleuil, R., Momber, S., Cuddeford, L., Phillips, M. B., ... & Gill, F. J. (2022). “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care. Children, 9(3), 322. https://doi.org/10.3390/children9030322

Assis, L. A., Batista, P. S. D. S., Lima, D. R. A. D., Silva, S. D. O., Duarte, M. S. C., & Araújo, C. R. D. D. (2020). Vivências de mães de crianças com câncer em cuidados paliativos mediante diagnóstico, tratamento e apoio familiar. Rev. Pesqui.(Univ. Fed. Estado Rio J., Online), 1348-1354. http://dx.doi.org/10.9789/2175-5361.rpcfo.v12.9450

Boyden, J. Y., Hill, D. L., Nye, R. T., Bona, K., Johnston, E. E., Hinds, P., ... & Feudtner, C. (2022). Pediatric palliative care parents’ distress, financial difficulty, and child symptoms. Journal of pain and symptom management, 63(2), 271-282. https://doi.org/10.1016/j.jpainsymman.2021.08.004

Carr, K., Hasson, F., McIlfatrick, S., & Downing, J. (2022). Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study. European journal of pediatrics, 181(3), 1185-1196. https://doi.org/10.1007/s00431-021-04314-6

Coombes, L., Braybrook, D., Roach, A., Scott, H., Harðardóttir, D., Bristowe, K., ... & Harding, R. (2022). Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study. European journal of pediatrics, 1-14. https://doi.org/10.1007/s00431-022-04566-w

Corrêa, A. R., Andrade, A. C. D., Manzo, B. F., Couto, D. L., & Duarte, E. D. (2015). As práticas do Cuidado Centrado na Família na perspectiva do enfermeiro da Unidade Neonatal. Escola Anna Nery, 19, 629-634. https://doi.org/10.5935/1414-8145.20150084

Dolan, J. G., Hill, D. L., Faerber, J. A., Palmer, L. E., Barakat, L. P., & Feudtner, C. (2021). Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross‐sectional study. Pediatric Blood & Cancer, 68(7), e28991. https://doi.org/10.1002/pbc.28991

Ghorbani, F., Iranmanesh, S., Razban, F., & Dehghan, M. (2020). Parental coping with childhood cancer and its relationship with self‐construal: A survey in southeast Iran. Health Science Reports, 3(3), e185. https://doi.org/10.1002/hsr2.185

Iglesias, S., Zollner, A., & Constantino, C. (2016). Cuidados paliativos pediátricos. https://doi.org/10.25060/residpediatr

Inocenti, A., Rodrigues, I. G., &Miasso, A. I. (2009). Vivências e sentimentos do cuidador familiar do paciente oncológico em cuidados paliativos. Revista Eletrônica de Enfermagem, 11(4), 858-65.https://doi.org/10.5216/ree.v11i4.5197

Kim, J. Y., & Park, B. K. (2021). The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer. INQUIRY: The Journal of Health Care Organization, Provision, and Financing, 58, 00469580211028580. https://doi.org/10.1177/00469580211028580

Lockwood, B., & Humphrey, L. (2018). Supporting children and families at a Child’s end of life: pediatric palliative care pearls of anticipatory guidance for families. Child and Adolescent Psychiatric Clinics, 27(4), 527-537. https://doi.org/10.1016/j.chc.2018.05.003

Maffei, B., de O Arrieira, I. C., Ferreira, R. A., & Cardoso, D. H. (2019). Estratégias de enfrentamento de cuidadores de pacientes em cuidados paliativos no domicílio. Psicologia: Teoria e Prática, 21(3). http://dx.doi.org/10.5935/1980-6906/psicologia.v21n3p303-322

Manor-Binyamini, I., & Schreiber-Divon, M. (2022). Listening to Parents of Children With Cancer—Between Life and its end. Journal of Patient Experience, 9, 23743735221106589. https://doi.org/10.1177/23743735221106589

Maturana, A. P. P. M., & Valle, T. G. M. D. (2014). Estratégias de enfrentamento e situações estressoras de profissionais no ambiente hospitalar. Psicologia Hospitalar, 12(2), 02-23. http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1677-74092014000200002

Mekelenkamp, H., Lankester, A. C., Bierings, M. B., Smiers, F. J., de Vries, M. C., & Kars, M. C. (2020). Parental experiences in end‐of‐life decision‐making in allogeneic pediatric stem cell transplantation: “Have I been a good parent?”. Pediatric Blood & Cancer, 67(5), e28229. https://doi.org/10.1002/pbc.28229

Misko, M. D, Santos, M. R. D, Ichikawa, C. R. D. F, Lima, R. A. G. D, &Bousso, R. S. (2015). A vivência de familiares de crianças e/ou adolescentes em cuidados paliativos: flutuando entre a esperança e o desespero em um mundo transformado pela perda. Revista Latino-Americana de Enfermagem, 23(3), 560-567. https://doi.org/10.1590/0104-1169.0468.2588

Mogensen, N., Saaranen, E., Olsson, E., Klug Albertsen, B., Lähteenmäki, P. M., Kreicbergs, U., ... & Harila‐Saari, A. (2022). Quality of life in mothers and fathers of children treated for acute lymphoblastic leukaemia in Sweden, Finland and Denmark.. British Journal of Haematology.

Monterosso, L., &Kristjanson, L. J. (2008). Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliative medicine, 22(1), 59-69. https://doi.org/10.1177/0269216307084608

Nafratilova, M., Allenidekania, A., & Wanda, D. (2018). Still hoping for a miracle: Parents' experiences in caring for their child with cancer under palliative care. Indian journal of palliative care, 24(2), 127. DOI: 10.4103/IJPC. IJPC_195_17

Nelson, M., Kelly, D., McAndrew, R., & Smith, P. (2017). ‘Just gripping my heart and squeezing’: naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting. Patient Education and Counseling, 100(9), 1751-1757. https://doi.org/10.1016/j.pec.2017.03.028

Oliveira, S. G, Quintana, A. M, Budó, MDLD, Kruse, M. H. L, Garcia, R. P, & Simon, B. S. (2013). O enfrentamento da terminalidade de cuidadores familiares durante a internação domiciliar. Rev Rene, 14 (3), 460-469. http://www.periodicos.ufc.br/rene/article/view/3413

Price, J., Hurley, F., & Kiernan, G. (2022). ‘Managing an unexpected life-a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition. Journal of Child Health Care, 13674935221132920. https://doi.org/10.1177/13674935221132920

Rincón-Fernández, C. D. (2018). Necesidades psicológicas y espirituales del niño con encefalopatía grave y su familia. Rev. neurol.(Ed. impr.), S57-S60. https://doi.org/10.33588/rn.66S02.2018206

Sanchez, K. D. O. L., Ferreira, N. M. L. A., Dupas, G., & Costa, D. B. (2010). Apoio social à família do paciente com câncer: identificando caminhos e direções. Revista Brasileira de Enfermagem, 63(2), 290-299. https://doi.org/10.1590/S0034-71672010000200019

Souza, M. T. D., Silva, M. D. D., & Carvalho, R. D. (2010). Revisão integrativa: o que é e como fazer. Einstein (São Paulo), 8(1), 102-106.https://doi.org/10.1590/S1679-45082010RW1134

Tan, A. J. N., Tiew, L. H., & Shorey, S. (2021). Experiences and needs of parents of palliative paediatric oncology patients: A meta‐synthesis. European Journal of Cancer Care, 30(3), e13388. https://doi.org/10.1111/ecc.13388

Tutelman, P. R., Lipak, K. G., Adewumi, A., Fults, M. Z., Humphrey, L. M., & Gerhardt, C. A. (2021). Concerns of parents with children receiving home-based pediatric palliative care. Journal of pain and symptom management, 61(4), 705-712. https://doi.org/10.1016/j.jpainsymman.2020.09.007

Vale, J. M. M., Neto, A. C. M., dos Santos, L. M. S., & de Santana, M. E. (2019). Educação em saúde ao familiar cuidador de adoecidos em cuidados paliativos oncológicos domiciliares. Enfermagem em foco, 10(2).http://revista.cofen.gov.br/index.php/enfermagem/article/view/1684/519

Verberne, L. M., Kars, M. C., Schouten-van Meeteren, A. Y., van den Bergh, E. M., Bosman, D. K., Colenbrander, D. A., ... & van Delden, J. J. (2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European journal of pediatrics, 178(7), 1075-1085. https://doi.org/10.1007/s00431-019-03393-w

World Health Organization. (2002). National cancer controlprogrammes: policies and managerialguidelines. World Health Organization.

Zhukovsky, D. S., Rozmus, C. L., Robert, R., Bruera, E., Wells, R. J., & Cohen, M. Z. (2021). Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective. Children, 8(8), 657. https://doi.org/10.3390/children8080657

Published

24/02/2023

How to Cite

EXPERIENCES AND STRATEGIES OF COPING WITH FAMILY MEMBERS WITH CHILDREN IN PEDIATRIC PALLIATIVE CARE: A LITERATURE REVIEW . (2023). RECIMA21 - Revista Científica Multidisciplinar - ISSN 2675-6218, 4(2), e422762. https://doi.org/10.47820/recima21.v4i2.2762