Effect of reading an educational booklet about sickle cell disease on family members' knowledge

Keywords: Anemia, Sickle Cell; Educational Technology; Health Education; Child; Family.


Objective: to analyze the effect of reading an educational booklet about sickle cell disease related to family members’ knowledge. Methods: quasi-experimental study, with 20 children´s family members with sickle cell disease. A form was used before and 30 days after medical consultation (pre- and post-test). The booklet was given to the family member on the day of the consultation. Analysis was performed using Statistical Package for the Social Science version 20 with the Shapiro-Wilk, Student’s t, McNemar’s chi-square and Odds Ratio statistical tests. Results: all participants were female, mostly mothers aged 20 to 30 years with high school education. The analysis revealed increase in the number of correct answers after reading the booklet with statistical significance (p<0.001). Conclusion: the reading of the booklet and the strategies used to encourage it contributed to increase the knowledge of family members about some disease aspects, enabling them to better deal with this disease.


Fernandes Q. Therapeutic strategies in sickle cell anemia: the past present and future. Life Sci. 2017; 1(178):100-8. doi: https://doi.org/10.1016/j.lfs.2017.03.025

Usman RM, Pawara SM, Patil TP. Sickle cell disease: an overview. J Pharm Res [Internet]. 2017 [cited Jan 10, 2021]; 11(6):780-6. Available from: https://www.researchgate.net/publication/318113918_Sickle_Cell_Disease_An_Overview

Yadav P, Vagha J. Impact of education on the know- ledge and skills of parents of children with sickle cell disease. Int J Contemp Pediatr. 2018; 5(1):209-13. doi: https://dx.doi.org/10.18203/2349-3291.ijcp20175588

Figueiredo SV, Lima LA, Silva DPB, Oliveira RMC, Santos MP, Gomes ILV. Importance of health gui- dance for family members of children with sickle cell disease. Rev Bras Enferm. 2018; 71(6):2974-82. doi: https://dx.doi.org/10.1590/0034-7167-2017-0806

Owusu AAA, Acheampong AD, Eshun-Noble EJ, Painstil V. Assessing parental knowledge on sickle cell disease: a phenomenological study. J Health Med Nurs [Internet]. 2018 [cited Jan 10, 2021]; 46:84-9. Available from: https://core.ac.uk/download/pdf/234692432.pdf

Nakazwe E, Mwanakasale V, Siziya S. Knowledge attitude and practices of parents with children suffering from sickle cell disease towards factors that precipitate sickle cell crises at Arthur Davidson children’s hospital in Ndola Zambia. Asian Pac J Health Sci. 2017; 4(3):166-70. doi: http://dx.doi.org/10.21276/apjhs.2017.4.3.26

Figueiredo SV, Moreira TMM, Mota CS, Oliveira RS, Gomes ILV. Creation and validation of a health guidance booklet for family members of children with sickle cell disease. Esc Anna Nery. 2019; 23(1):e20180231. doi: https://dx.doi.org/10.1590/2177-9465-EAN-2018-0231

Gomes GC, Nornberg PKO, Jung BC, Nobre CMG, Rodrigues EF, Xavier DM. Chronic disease in children: family experience in diagnostic reception. Rev Enferm UFPE on line [Internet]. 2016 [cited Jan 10, 2021]; 10(6):4837-44. Available from: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/view/11263/12891

Yawson AE, Abuosi AA, Badasu DM, Atobra D, Adzei FA, Anarfi JK. Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers. Afr Health Sci 2016; 16(2):378-88. doi: http://dx.doi.org/10.4314/ahs.v16i2.6

Pimentel RRS, Targa T, Scardoelli MGC. From diagnosis to the unknown: perceptions of parents of children and adolescents with diabetes mellitus. Rev Enferm UFPE on line [Internet]. 2017 [cited Jan 10, 2021]; 11(3):1118-26. Available from: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/view/13486/16203

Nasiri YA, Jacob E, Lee E, Nyamathi A, Brecht M, Robbins WA, et al. Parent educational intervention program for improving parental knowledge, self-efficacy and health related quality of life in children with sickle cell disease using smartphone technology: a randomized controlled trial. Hematol Med Oncol. 2020; 5:1-8. doi: https://dx.doi.org/10.15761/HMO.1000203

El-Gawad SMEA. Empowering mothers to overcome sickle cell crisis in their children through engagement and education. Am J Nurs. 2017; 5(5):182-90. doi: https://dx.doi.org/10.12691/ajnr-5-5-4

Madani BM, Raddadi RA, Jaouni AS, Omer M, Awa MA. Quality of life among caregivers of sickle cell disease patients: a cross sectional study. Health Qual Life Outcomes. 2018; 16(1):176. doi: http://dx.doi.org/10.1186/s12955-018-1009-5

Santos MP, Menezes CPSR, Costa DCCO, Custódio LL, Silva DPB, Afonso LR, et al. Perfil epidemiológico de casos notificados da doença falciforme no Ceará. Braz J Development. 2021; 7(1):6840-52. doi: http://dx.doi.org/10.34117/bjdv7n1-462

Rodrigues CSS, Xavier ASG, Carneiro JM, Silva TD, Araújo RLMS, Passos SSS. Characterization of persons with falciform disease in a city of the state of Bahia. Rev Baiana Enferm. 2018; 32:e26065. doi: http://dx.doi.org/10.18471/rbe.v32.26065

Marques T, Vidal SA, Braz AF, Teixeira MLH. Clinical and care profiles of children and adolescents with sickle cell disease in the Brazilian Northeast region. Rev Bras Saúde Mater Infant. 2019; 19(4):889-96. doi: https://dx.doi.org/10.1590/1806-93042019000400008

Magalhães NNS, Paz TMM, Medeiros RL, Espósito TS, Santos OF, Ernesto IC, et al. Doença Cerebrovascular: Aspectos de uma população com Doença Falciforme. Braz J Hea Rev. 2020; 3(5):15440-50. doi: http://dx.doi.org/10.34119/bjhrv3n5-320

Caprini FR, Motta AB. The psychological impact on family caregivers of children and adolescents with sickle cell anemia. Estud Psicol. 2021; 38(1):190-8. doi: https://doi.org/10.1590/1982-0275202138e190168

Research Article