Empowering Mothers to Overcome Sickle Cell Crisis in Their Children through Engagement and Education

Sahar Mahmoud El-Khedr Abd El-Gawad^1,

¹Pediatric Nursing Department, Faculty of Nursing, Tanta University, Tanta, Egypt

Cite this paper:
Sahar Mahmoud El-Khedr Abd El-Gawad. Empowering Mothers to Overcome Sickle Cell Crisis in Their Children through Engagement and Education. American Journal of Nursing Research. 2017; 5(5):182-190. doi: 10.12691/ajnr-5-5-4

Abstract

Background: Sickle cell anemia is a common disease in Saudi Arabia. It causes major crises to children who suffering from it. Empowerment refers to measures designed, to increase autonomy and self-determination through professional support and engagement and empowerment. Mothers education and engagement are critical components of high-quality and early care of children suffering from sickle cell crises (SCC). Aims: To empower mothers to manage SCC events experienced by their children. To educate the mothers and engage them in caring for their children and to evaluate the effect of engagement and education on mother’s knowledge and performance regarding SCC. Study design: A quasi-experimental design was used. Individualized interview and small group teaching with pre and post evaluation was applied. Setting: The study was conducted in Pediatric Hematological Department at Maternity and Children Hospital, at Makkah Al-Mukararma. Subjects: A purposive sample composed of 40 mothers recruited according to certain inclusion and exclusion criteria. Tools: Two tools were used to collect data including, First: Interview Questionnaire sheet was used to collect mothers' socio-demographic characteristics. Second: empowerment scale, that consisted of 34 items within three construct areas family, services system and community. Results: Nearly two thirds of the mothers had poor knowledge regarding SCA pretest compared to one fifth of them posttest. Statistical significant differences regarding was found (P= 0.00). Improved mothers' performance was recognized post-test, most of the mothers, always give immunization, and enough oxygen. Three quarters of the mothers offer plenty of fluids to their children. Conclusion: Mothers knowledge and performance were improved after education and engagement. Mothers empowerment was very true “post-test” and there was statistical significant difference pre and posttest. There were significant positive correlations between mothers' age and their education, total knowledge, and total performance. Recommendations: Empowering and engaging mothers in caring for their children with SCA. Developing educational program for mothers about SCA and SCC.

Keywords:
mothers' empowerment sickle cell crisis engagement and education

This work is licensed under a Creative Commons Attribution 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/

References:

[1]	Adams, Robert. Empowerment, participation and social work. New York: Palgrave Macmillan, 2008, p.6.
[2]	Zimmerman, M.A. (2000). Empowerment Theory: Psychological, Organizational and Community Levels of Analysis. “Handbook of Community Psychology,” 43-63.
[3]	Ebrahimi H., Malek A., Babapoor J., Abdorrahman N., & Empowerment of Mothers in Raising and Caring of Child with Autism Spectrum Disorder, 2013, International Research Journal of Applied and Basic Sciences, www.irjabs.com., Vol, 4 (10): 3109-3113.
[4]	Laschinger, H. K. S., Wilk, P., Cho, J., & Greco, P. (2009). Empowerment, engagement and perceived effectiveness in nursing work environments: Does experience matter? Journal of Nursing Management, 17, 636-646.
[5]	Baltimore, MD, McWayne, C., Hampton, V., Fantuzzo, J., Cohen, H.L., & Sekino, Y. (2004). A multivariate examination of parent involvement and the social and academic competencies of urban kindergarten children. Paul H. Brookes Publishing Co. Psychology in the Schools, 41(3), 363-377.
[6]	Bakker, A. B., LeBlanc, P. M., & Schaufel, W. B. (2005). Burnout contagion among intensive care nurses. Journal of Advanced Nursing, 51 (3), 276-287.
[7]	Laschinger, H. K. S., Wilk, P., Cho, J., & Greco, P. (2009). Empowerment, engagement and perceived effectiveness in nursing work environments: Does experience matter? Journal of Nursing Management, 17, 636-646.
[8]	Adapted from Maurer M, Dardess P, Carman, KL, et al. Guide to Patient and Family Engagement: Environmental Scan Report. (Prepared by American Institutes for Research under contract HHSA 290-200-600019). AHRQ Publication No. 12-0042-EF. Rockville, MD: Agency for Healthcare Research and Quality; May 2012.
[9]	Benjamin K. Chu, M.D., 2013, the AHA Committee on Research released Engaging Health Care Users: A Framework for Healthy Individuals and Communities (http://www.aha.org/research/cor/engaging/index.shtml).
[10]	Oni L, Dick M., Walters J., & Rees D., A parent's guide to managing scickle cell anemia, 3 rd edition Brent scickle cell & thalassemia center, London.
[11]	Mansour M., Mohammed I., Abdullah S., Alherbish A., Ahmed A., & Al-omar.,The Prevalence of Sickle Cell Disease in Saudi children and adolescent, Saudi Med,. Journal Volume, 2008; 29(10). 1481-1483.
[12]	Yawn BP, Buchanan GR, Annan AN, et al. (2014). Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA 312: 1033-1048.
[13]	DeBaun MR (2014) The challenge of creating an evidence-based guideline for sickle cell disease.JAMA 312: 1004-1005.
[14]	Julie A., Sylvia T., Cristiane B., Timothy L., Bogdan D., Sandra Sherman-B., Christy B., and James W., PedsQLTM Multidimensional Fatigue Scale in Sickle Cell Disease: Feasibility, Reliability, and Validity., Pediatric Blood Cancer 2014; 61: 171-177.
[15]	Valavi E., Ansari M.J. & zandian K., How to Reach Rapis Diagnosis in Sickle cell disease? Iran J Pediatr, Mar (2010); 20(1): 69-74.
[16]	Asnani MR, Reid ME., Ali SB, Lipps G, & Williams-Green P., Quality of life in Patients with Sickle Cell Disease in Jamaica: Rural-Urban Differences, Rural and Remote Health. 2008; 8: 890: http://www.rrh.org.au.
[17]	Panepinto Julie A., Pajewski Nicholas M., Foerster Lisa M., Svapna Sabnis, Raymond G. Hoffmann: 2009: Impact of Family Income and Sickle Cell Disease on the Health-Related Quality of Life of Children. Qual Life Res (2009) 18:5-13.Pages from, 9412-8.
[18]	Joshua J, Vichincky E., & DeBaun M., Overview of the Management and Prognosis of Sickle Cell Disease, Wolters Kluwer, Literature Review Current through: Dec 2014. Available at, http://www.uptodate.com/contents/overview-of-the-management-and-prognosis-of-sickle-cell-disease.
[19]	Akohoue SA, Shankar S, Milne GL, et al. Energy Expenditure, Inflammation, and Oxidative Stress in Steady-State Adolescents with Sickle Cell Anemia. Pediatric Res 2007; 61:233-8.
[20]	Xandra W.,1 Janneke Hatzmann, Elske E., Johanna H. Marjolein Peters, Karin F., and Martha G. Quality of Life of Female Caregivers of Children with Sickle Cell Disease: a Survey, Haematological 2008; 93(4):588-593.
[21]	Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K. Parental report of Health Related Quality of Life in Children with Sickle Cell Disease, J Behav Med. 2002 Jun; 25(3): 269-83.
[22]	Michael RD, Vichinsky E., Behrman RE, Jenson HB, Stanton BF, Hemoglobinopathies In Kliegman , Nelson Textbook of pediatrics. 18th ed. New Delhi: Elsevier Publication; p. 2026. (2008).
[23]	Shanna Lea Gustafson. Knowledge and Health Beliefs of Sickle Cell Disease and Sickle Cell Trait: the Influence on Acceptance of Genetic Screening for Sickle Cell Trait., Master theses, University of Pittsburgh. (2006).
[24]	Hand L. Sickle Cell Treatment Guideline Released. Medscape Medical News. Available at http://www.medscape.com/viewarticle/831603.Accessed September 14, 2014.
[25]	Kumar S, Powars D, Allen J, & Haywood LJ. Anxiety, Self-concept, Personal and Social Adjustment in Children with Sickle Cell Anemia. J Pediatr, 2005; 88: 859-63.
[26]	Sickle Cell Disease Awareness and Education Strategy Development Workshop Report, National Heart, Lung, and Blood Institute. (2008). Sickle cell anemia. Diseases and Conditions. Retrieved from http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA.
[27]	Lessing S., Vichinsky E., Parents’ handbook of sickle Cell Disease, Children’s Hospital – Oakland, California Department of Public Health, Genetic Disease Screening Program; Revised 1998; Revised 2008.
[28]	Jastaniah W (2011). “Epidemiology of sickle cell disease in Saudi Arabia”. Annals of Saudi Medicine. 31 (3): 289-93.
[29]	Jump up ^ Memish ZA, Saeedi MY (2011). “Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and β-thalassemia in Saudi Arabia”. Annals of Saudi Medicine. 31 (3): 229-35.
[30]	Koren, DeChillo, & Friesen, Family Empowerment Scale, Regional Research Institute, Portland State University, Portland.
[31]	Family empowerment scale, Department of behavioral and developmental services: Children's quality improvement assessment data, 2008.
[32]	Hilda H. (2012). Knowledge and practices of parents and caretakers towards prevention of Scickle Cell Crises in Children with Sickle Cell Disease at the University Teaching Hospital (LUSAKA).
[33]	Olorunfemi E. A., Ahmed B. J., and Alabi A. D., (2016). Parental Influence on Sickle Cell Crisis among Patients Attending Secondary Facilities in Abeokuta South Local Government Area, Ogun State, British Journal of Medicine & Medical Research 14(9): 1-10, 2016.
[34]	Almutairi F., Almutairi N., Almutairi A., & Almutairi M., (2017). Assess Mother’s Knowledge Regarding Their Children With Sickle Cell Disease, International Journal of Healthcare Sciences, Vol. 4, Issue 2, pp: (736-739), www.researchpublish.com.
[35]	Finkelstein Y, Schechter T, Garcia-Bournissen F, et al. Is morphine exposure associated with acute chest syndrome in children with vaso-occlusive crisis of sickle cell disease? A 6-year case-crossover study. Clinical Therapeutics. 2007; 29: 2738-43.
[36]	Buchanan ID, Woodward M, Reed GW. Opioid selection during sickle cell pain crisis and its impact on the development of acute chest syndrome. Pediatric Blood & Cancer. 2005; 45: 716-24.
[37]	Lewing K, Britton K, Debaun M, et al. The impact of parenteral narcotic choice in the development of acute chest syndrome in sickle cell disease. Journal of Pediatric Hematology/Oncology. 2011; 33: 255-60.
[38]	Jaffer E.D. and Amrallah KF., Ali MK., Mohammed An., Hasan AR., & Humood MZ., (2009). Adult Sickle Cell Disease Patients' knowledge and Attitude toward the Preventive Measures of Scickle Cell Disease Crises. Available online http://www.academicjournal.orh/ijnm@2009AcademiaJournal. Accessed on 8/7/2011.
[39]	Hussain R. Yusuf, MD., Michele A. & Lloyd-Puryear,, Sickle Cell Disease The Need for a Public Health Agenda., American Journal of Preventive Medicine, 2011;41(6S4): S376-S383) Published by Elsevier Inc.
[40]	Bethesda MD., (2002). The management of sickle cell disease. 4th ed., National Heart, Lung, and Blood Institute, Division of Blood Diseases and Resources, NIH Publication No. 02-2117, 2002.
[41]	Wethers DL.Sickle cell disease in childhood: part I. laboratory diagnosis, pathophysiology, and health maintenance. Am Fam Physician, 2000; 62: 1013-20.
[42]	Mahat G, Scoloveno MA, Donnelly CB. Written educational materials for families of chronically ill children. J Am Acad Nurse Pract2007; 19: 471-6.
[43]	Arrayed S, A & Hajeri A., A. (2009). Public Awareness of SCD in Bahrain, Available at http://www.ned.nlm.nih.gov/sites/entrez?cmd=search&PubMede& term. Accessed on 25/01/2012.
[44]	Fahad F. A., Naif F. A., Albandari F. A., Almutairi M., (2017), Assess Mother’s Knowledge Regarding Their Children With Sickle Cell Disease., International Journal of Healthcare Sciences, Available at: www.researchpublish.com.