Perceptions of siblings of children hospitalized due to chronic disease
DOI:
https://doi.org/10.12707/RIV18074Keywords:
chronic disease, siblings, pediatric nursing, family, perception, health vulnerabilityAbstract
Background: The daily family life of a child with chronic disease changes according to the illness’s demands. The siblings of these children may receive less attention from both parents, as well as from the rest of the family, who may focus more on the sick child and not in a similar way on the healthy sibling.
Objectives: To compile perceptions of siblings of children hospitalized due to chronic disease.
Methodology: Siblings of children diagnosed with chronic diseases, aged between 8 and 16 years, participated in the study. We used open interviews, recording, transcribing, and submitting them to analysis.
Results: We were able to interview only four siblings. In the interviews’ analysis, four categories of results (coping with the sibling’s disease; family restructuring, experiences resulting from the sibling’s hospitalization, and experiences of exclusion) emerged.
Conclusion: The siblings of children with chronic diseases live in a situation of vulnerability and exclusion, demonstrate difficulties in dealing with their perceptions and feelings, which proves it is to involve the sibling in the nursing process.
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References
Araújo, Y., Reichert, A., Vasconcelos M., & Collet, N. (2013). Fragility of the social network of families of children with chronic disease. Revista Brasileira de Enfermagem, 66(5), 675-681. doi: 10.1590/S0034-71672013000500006
Bardin, L. (2011). Análise de conteúdo. São Paulo, Brasil: Edições 70.
Campos, C. (2004). Método de análise de conteúdo: Ferramenta para a análise de dados qualitativos no campo da saúde. Revista Brasileira de Enfermagem, 57(5), 611-614. doi: 10.1590/S0034-71672004000500019
Driessnack, M., Sousa, V., & Mendes, I. (2007). An overview of research designs relevant to nursing: Part 2: Qualitative research designs. Revista Latino-Americana de Enfermagem, 15(4), 684-688. doi: 10.1590/S0104-11692007000400025
Fontanella, B., Ricas, J., & Turato, E. (2008). Amostragem por saturação em pesquisas qualitativas em saúde: Contribuições teóricas. Cadernos de Saúde Pública, 24(1), 17-27. doi: 10.1590/S0102-311X2008000100003
Haukeland, Y., Fjermestad, K., Mossige, S., & Vatne, T. (2015). Emotional experiences among siblings of children with rare disorders. Journal of Pediatric Psychology, 40(7), 712-720. doi: 10.1093/jpepsy/jsv022
Humphrey, L., Hill, D., Carroll, K., Rourke, M., Kang, T., & Feudtner, C. (2015). Psychological well-being and family environment of siblings of children with life threatening illness. Journal of Palliative Medicine, 18(11), 981-984. doi: 10.1089/jpm.2015.0150
Ichikawa, C., Bousso, R., Misko, M., Mendes-Castillo, A., Bianchi, E., & Damião, E. (2014). Cultural adaptation of the family management measure among families of children and adolescents with chronic diseases. Revista Latino-Americana de Enfermagem, 22(1), 115-122. doi: 10.1590/0104-1169.2978.2379
Johnson, B., Abraham, M., Conway, J., Simmons, L., Edgman-Levitan, S., Sodomka, P., . . . Ford, D. (2008). Partnering with patients and families to design a patient- and family-centered health care system: Recommendations and promising practices. Recuperado de http://www.hqontario.ca/Portals/0/modals/qi/en/processmap_pdfs/articles/partnering%20with%20patients%20and%20families%20to%20design%20a%20patient-%20and%20family-centered%20health%20care%20system.pdf
Lash, M. (2013). Brain injury: Helping brothers and sisters. Pediatric Nursing, 39(6), 309-310.
Lovgren, M., Bylund-Grenklo, T., Jalmsell, L., Wallin, A., & Kreicbergs, U. (2015). Bereaved siblings’ advice to healthcare professionals working with children with cancer and their families. Journal of Pediatric Oncology Nursing, 33(4), 297-305. doi: 10.1177/1043454215616605
Misko, M. D., Santos, M. R., Ichikawa, C. R., Lima, R. A., & Bousso, R. S. (2015). A experiência da família e/ou adolescente em cuidados paliativos: Flutuando entre a esperança e a desesperança num mundo transformado pelas perdas. Revista Latino-Americana de Enfermagem, 23(3), 560-567. doi: 10.1590/0104- 1169.0468.2588
Paiva, B., Carvalho, A., Lucchetti, G., Barroso, E., & Paiva, C. (2015). “Oh, yeah, I´m getting closer to God”: Spirituality and religiousness of family caregivers of cancer patients undergoing palliative care. Support Care Cancer, 23(1), 2383-2389. doi: 10.1007/s00520-015-2604-1
Santos, L., Araújo, J., Lima Júnior, R., Sousa, R., Conceição, V., & Santana, M. (2013). Palliative care for children with cancer: Reflections on the health-disease process. Revista Brasileira de Pesquisa em Saúde, 15(3), 130-138. doi: 10.21722/rbps.v15i3.6335
Sav, A., King, M. A., Whitty, J. A., Kendall, E., McMillan, S. S., Kelly, F., . . . Wheeler, A. J. (2015). Burden of treatment for chronic illness: A concept analysis and review of the literature. Health Expectations, 18(3), 312-324. doi: 10.1111/hex.12046 Shields, L. (2015). What is “family-centered care”? [Guest editorial]. European Journal for Person Centered Healthcare, 3(2), 139-144. doi: 10.5750/ejpch.v3i2.993
Vasques, R., Mendes-Castillo, A., Bousso, R., Borghi, C., & Sampaio, P. (2014). Giving voice to children: Considerations on qualitative interviews in pediatrics. Revista Mineira de Enfermagem, 18(4), 1016-1020. doi: 10.5935/1415-2762.20140075
Vieira, A., & Lima, R. (2002). Children and adolescents with a chronic disease: Living with changes. Revista Latino-Americana de Enfermagem, 10(4), 552-560. doi: 10.1590/S0104-11692002000400013
Wender, E. (2012). Supporting the family after the death of a child. Pediatrics, 130(6), 1164-1169. doi: 10.1542/peds.2012-2772
Woodgate, R., Edwards, E., Ripat, J., Rempel, G., & Johnson, S. (2016). Siblings of children with complex care needs: Their perspectives and experiences of participating in everyday life. Child Care Health and Development, 42(4), 504-512. doi: 10.1111/cch.12345
