Keywords
child
family nursing
perception of support
How to Cite
Abstract
Background: caring for children with chronic conditions and their families requires in-depth knowledge of families and their disease management process. Objectives: to describe the sociodemographic profile of the parents and the clinical profile of the children/adolescents with chronic pediatric conditions; to describe the parents' perception of the support provided by the nurses; and to explore the association between the parent's perception of the support provided by the nurses and the sociodemographic variables. Methodology: this descriptive-correlational study involved a sample of 237 parents who participated by answering an online questionnaire. The questionnaire included the Portuguese version of the Iceland-Family Perceived Support Questionnaire and questions about disease management and parents' perceptions of their own and their children's health. Results: the sample comprised mothers of adolescents with chronic physical illnesses and behavioral disorders. These parents reported a perception of support provided by nurses that was above the midpoint of the scale, with higher levels of perceived support in the cognitive domain. An association was found between the perception of support provided by nurses and the parent's level of education, age, children's age, and the parents' self-perception of health. Conclusion: these results may contribute to understanding the needs of these families, particularly in the emotional domain, and reinforce the importance of adapting nursing interventions for these families.
References
Bruce, E., Dorell, A., Lindh, V., Erlingsson, C., Lindkvist, M., & Sundin, K. (2016). Translation and Testing of the Swedish Version of Iceland-Family Perceived Support Questionnaire With Parents of Children With Congenital Heart Defects. Journal of Family Nursing, 22(3), 298-320. https://doi.org/10.1177/1074840716656343
Emmamally, W., & Brysiewicz, P. (2019). Families’ perceptions of support from health care professionals in the three emergency departments in KwaZulu Natal, South Africa. International Journal of Africa Nursing Sciences, 10, 55-60. https://doi.org/10.1016/j.ijans.2019.01.004
Gouveia, M. C., Rodrigues, M. J., Duarte, J. C., Sveinbjarnardottir, E. K., & Henriques, M. A. (2019). Cross Cultural Validation of the Iceland- Family Perceived Support Questionnaire (ICE-FPSQ) to European Portuguese. BMC Nursing, 18(2), 7. https://doi.org/10.1186/s12912-019-0370-y
Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O'Neal, L., McLeod, L., Delacqua, G., Delacqua, F., Kirby, J., Duda, S. N., & Consortium, R. E. (2019). The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics, 95, 103208. https://doi.org/10.1016/j.jbi.2019.103208
Huang, L., Freed, G. L., & Dalziel, K. (2020). Children With Special Health Care Needs: How Special Are Their Health Care Needs? Acad Pediatr, 20(8), 1109-1115. https://doi.org/10.1016/j.acap.2020.01.007
Lacerda, A. F., Oliveira, G., Cancelinha, C., & Lopes, S. (2019). Utilização do Internamento Hospitalar em Portugal Continental por Crianças com Doenças Crónicas Complexas (2011 – 2015). Acta Medica Portuguesa, 32(7-8), 488-498. https://doi.org/10.20344/amp.10437
Lima, L., Silva, R., & Andrade, L. (2023). Tratamento com Perfusão Subcutânea Contínua de Insulina na adolescência – a perceção materna. Revista De Investigação & Inovação Em Saúde, 5(2), 59–69. https://doi.org/10.37914/riis.v5i2.237
Lummer-Aikey, S., & Goldstein, S. (2020). Sibling Adjustment to Childhood Chronic Illness: An Integrative Review. Journal of Family Nursing, 1074840720977177. https://doi.org/10.1177/1074840720977177
Mendes, T. N., Leite da Silva Cardoso, É., Trindade de Araújo Tiburtino Neves, N., Araújo, Y. B. d., & De Lima Silva, K. (2022). Avaliação do funcionamento familiar de crianças e adolescentes com doença crônica. Revista Família, Ciclos de Vida e Saúde no Contexto Social, 10(3), 475-487. https://doi.org/10.18554/refacs.v10i3.5843
Pinto, M., Santos, V., Guimarães, J., Gesteira, E., Duarte, E., & Braga, P. (2023). Gestão familiar de crianças com condições crónicas: Perspetivas dos cuidadores. Revista de Enfermagem Referência, VI Série(Nº2). https://doi.org/10.12707/rvi22100
Romana, A., Cardosa, M. F., Lorenzo, C., Matias, J., Almeida, M., & Calhau, P. (2023). Pediatric Department Hospital admissions due to Complex Chronic Conditions: A Retrospective Study. Pediatric Oncall, 20(1). https://doi.org/10.7199/ped.oncall.2023.9
Shajani, Z., & Snell, D. (2023). Wright & Leahey's Nurses and Families : A Guide to Family Assessment and Intervention (8th ed. ed.). F.A. Davis.
Sigurdardottir, A. O., Garwick, A. W., & Svavarsdottir, E. K. (2017). The importance of family support in pediatrics and its impact on healthcare satisfaction. Scandinavian Journal of Caring Sciences, 31(2), 241-252. https://doi.org/10.1111/scs.12336
Spurr, S., Danford, C. A., Roberts, K. J., Sheppard-LeMoine, D., Machado Silva-Rodrigues, F., Darezzo Rodrigues Nunes, M., Darmofal, L., Ersig, A. L., Foster, M., Giambra, B., Lerret, S., Polfuss, M., Smith, L., & Somanadhan, S. (2023). Experiences of Caring for a Child with a Chronic Illness: A Systematic Review. Children, 10(2), 197. https://www.mdpi.com/2227-9067/10/2/197
Sveinbjarnardottir, E. K., Svavarsdottir, E. K., & Hrafnkelsson, B. (2012). Psychometric development of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ). Journal of Family Nursing, 18(3), 328-352. https://doi.org/10.1177/1074840712449203
Toledano-Toledano, F., & Luna, D. (2020). The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study. BioPsychoSocial Medicine, 14, 29. https://doi.org/10.1186/s13030-020-00201-y
Toledano-Toledano, F., Moral de la Rubia, J., Nabors, L. A., Dominguez-Guedea, M. T., Salinas Escudero, G., Rocha Perez, E., Luna, D., & Leyva Lopez, A. (2020). Predictors of Quality of Life among Parents of Children with Chronic Diseases: A Cross-Sectional Study. Healthcare, 8(4). https://doi.org/10.3390/healthcare8040456
Yang, J., Lin, L., Gao, Y., Wang, W., & Yuan, L. (2022). Interventions and strategies to improve social support for caregivers of children with chronic diseases: An umbrella review. Frontiers in Psychiatry, 13, 973012. https://doi.org/10.3389/fpsyt.2022.973012
Von der Lippe, C., Neteland, I., & Feragen, K. B. (2022). Children with a rare congenital genetic disorder: a systematic review of parent experiences. Orphanet Journal of Rare Diseases, 17(1), 375. https://doi.org/10.1186/s13023-022-02525-0
This work is licensed under a Creative Commons Attribution 4.0 International License.
Copyright (c) 2024 Sara Lemos, Maria Do Céu BARBIERI-FIGUEIREDO, Luísa Maria Costa ANDRADE, Lígia Maria Monteiro LIMA