Abstract
Aim: To identify scientific evidence about families of children with sickle cell disease. Method: An integrative review of the search used the following descriptors: anemia sickle cell; hemoglobin SC disease; hemoglobin sickle; family; family relations; and, child. The search was carried out for literature in Portuguese, English, and Spanish. The search used databases such as MEDLINE, LILACS, CINAHL, and PubMed, and looked for articles published between January 2005 and January 2015. Results: There were 16 articles selected that originated the following thematic categories: the impact of sickle cell disease on the family, psychosocial effects on family dynamics, child's quality of life, and family and social support/support networks. Discussion: The studies report that the family remains the main provider of care for children with sickle cell disease, and that families faces challenges in achieving comprehensive care and fighting for their children’s quality of life. C onclusion: This evidence will provide support for multi-professional teams in the construction of continuous care for the families of children who are sickle cell patients.References
Jordan L, Swerdlow P, Coates TD. Systematic review of transition from adolescent to adult care in patients with sickle cell disease. J Pediatr Hematol Oncol. 2013; 35(3):165-9.
Vigilante JA, DiGeorge NW. Sickle cell trait and diving: review and recommendations. Undersea Hyperb Med. 2014; 41(3):223-8.
Rodrigues DOW, Ferreira MCB, Campos SEM, Pereira PM, Oliveira CM, Teixeira MTB. História da triagem neonatal para doença falciforme no Brasil. Rev Med Minas Gerais. 2012; 22(1):66-72.
Silva-Pinto AC, Angulo IL, Brunetta DM, Neves FI, Bassi SC, Santis GC, et al. Clinical and hematological effects of hydroxyurea therapy in sickle cell patients: a single-center experience in Brazil. São Paulo Med J. 2013; 131(4):238-43.
Kanter J, Kruse-Jarres R. Management of sickle cell disease from childhood through adulthood. Blood Rev. 2013; 27(6):279-87.
Gold JI, Treadwell M, Weissman L, Vichinsky E. The mediating effects of family functioning on psychosocial outcomes in healthy siblings of children with sickle cell disease. Pediatr Blood Cancer. 2011; 57(1):1055-61.[included in the review].
Guimaraes TMR, Miranda WL, Tavares MMF. The day-to-day life of families with children and adolescents with sickle cell anemia. Rev Bras Hematol Hemoter.2009;31(1):9-14. [included in the review].
Hildenbrand AK, Barakat LP, Alderfer MA, Marsac ML. Coping and coping assistance among children with sickle cell disease and their parents. J Pediatr Hematol Oncol. 2015; 37(1):25-34. [included in the review].
Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546-53.
Melnyk BM, Fineout-Overholt E. Making the case for evidence-based practice. In: Melnyk BM, Fineout-Overholt E. Evidence-based practice in nursing & healthcare. A guide to best practice. Philadelphia: Lippincot Williams & Wilkins; 2005. p. 3-24.
Kam J,Panepinto JA,Brandow AM,Brousseau DC. Parental perception of quality of hospital care for children with sickle cell disease. Wis Med J. 2008;107(3):131-35. [included in the review].
van den Tweel XW, Hatzmann J, Ensink E, van der Lee JH, Peters M, Fijnvandraat K, et al. Quality of life of female caregivers of children with sickle cell disease: a survey. Haematologica. 2008;93(4):588-93. [included in the review]
Karlson CW, Haynes SL, Smith M, Faith MA, Elkin D, Megason G. Examination of risk and resiliency in a pediatric sickle cell disease population using the psychosocial assessment tool 2.0. J Pediatr Psychol. 2012; 37(9):1031-40. [included in the review]
Ayinmode T. Children with sickle cell disease who are experiencing psychosocial problems concurrently with their mothers: a Nigerian study. Afr J Psychiatry (Johannesbg). 2011; 14(1):392-401. [included in the review]
Herzer M, Godiwala N, Hommel KA, Driscoll K, Mitchell M, Crosby LE, et al. Family functioning in the contexto f pediatric chronic conditions. J Dev Behav Pediatr. 2010; 31(1):1-14. [included in the review]
Graff JC, Hankins JS, Hardy BT, Hall HR, Roberts RJ, Neely-Barnes SL. Exploring parent-siblings communication in families of children with sickle cell disease. Issues Compr Pediatr Nurs. 2010; 33(2):101-23. [included in the review]
Raphael JL, Butler AM, Rattler TL, Kowalkowski MA, Mueller BU, Giordano TP. Parental information, motivation, and adherence behaviors among children with sickle cell disease. Pediatr Blood Cancer. 2013; 60(7):1204-10. [included in the review].
Marsh VM, Kamuya DM, Molyneux SS. ”All her children are born that way”: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya. Ethn Health. 2011; 16(4-5):343-59. [included in the review].
Tunde-Ayinmode MF. Psychosocial impact of sickle cell disease on mothers of affected children seen at University of Ilorin Teaching Hospital, Ilorin, Nigeria. East Afr Med J. 2007; 84(9):410-19. [included in the review].
Mitchell MJ, Lemanek K, Palermo TM, Crosby LE, Nichols A, Powers SW. Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease. Clin Pediatr (Phila). 2007;46(4):311-19. [included in the review].
Menezes ASOP, Len CA, Hilário MOE, Terreri MTRA, Braga JAP. Quality of life in patients with sickle cell disease. Rev Paul Pediatr. 2013;31(1):24-9. [included in the review].
Guedes C. Decisões reprodutivas e triagem neonatal: a perspectiva de mulheres cuidadoras de crianças com doença falciforme. Ciênc Saúde Coletiva. 2012; 17(9): 2367-76. [included in the review].
Silva AH, Bellato R, Araújo LFS. Cotidiano da família que experiência a condição crônica por anemia falciforme. Rev Eletr Enf. [internet]. 2013 Apr-Jun [Cited 2015 May 09]; 15(2):437-46. Available from: http://dx.doi.org/10.5216/ree.v15i2.17687. [included in the review].
Rodrigues CCM, Araújo IEM, Melo LL. A família da criança com doença falciforme e a equipe enfermagem: revisão crítica. Rev Bras Hematol Hemoter. 2010;32(3):257-64. [included in the review].
Wright LM, Leahey M. Enfermeiras e Famílias: um guia para avaliação e intervenção na família. 5. ed. São Paulo: Roca, 2012.
Carvalho AS, Depianti JRB, Silva LF, Aguiar RCB, Monteiro ACM. Reactions of family members of children diagnosed with cancer: a descriptive study. Online braz j nurs [Internet]. 2014 Sep [Cited 2015 Mar 20]; 13(3):282-91. Available from: http://www.objnursing.uff.br/index.php/nursing/article/view/4356
Amaral JL, Almeida NA, Santos PS, Oliveira PP, Lanza FM. Perfil sociodemográfico, econômico e de saúde de adultos com doença falciforme. Rev Rene. 2015; 16(3):296-305.