Volume 7, Issue 3 (2019)                   HEHP 2019, 7(3): 1-8 | Back to browse issues page

XML Print


Download citation:
BibTeX | RIS | EndNote | Medlars | ProCite | Reference Manager | RefWorks
Send citation to:

Rahimi T, Khazir Z. Perceived Experiences of Life Problems for Parents with a Down Syndrome Child. HEHP. 2019; 7 (3) :1-8
URL: http://journals.modares.ac.ir/article-5-30286-en.html
1- Public Health Department, Health Faculty, Jiroft University of Medical Sciences, Jiroft, Iran
2- Health Education & Health Promotion Department, Health Faculty, Shahid Sadoughi University of Medical Sciences, Yazd, Iran , zahrakhazir@gmail.com
Abstract:   (133 Views)
Aims: Down syndrome (DS), as the most common cause of mental retardation causes many health problems for families. This study aimed to investigate the experiences of life problems for parents with a DS child.
Participants & Methods: This qualitative research was conducted using the conventional content analysis method on 21 Iranian parents with a DS child of over one year of age. Data were collected using online asynchronous interviews in 2017. Snowball sampling was continued until the data saturation was reached. Data collection and analysis were conducted simultaneously by qualitative content analysis.
Findings: Participants included 21 parents of children with DS in the age range of 28-49 years old. The analysis of qualitative data led to the extraction of three main themes, including "continuation of a difficult life", "inappropriate atmosphere of the community for acceptance of a child with DS", and "perceived future concerns".
Conclusion: The findings showed that parents of children with DS had major common concerns about taking care of their children. It is necessary for health policymaker and healthcare providers to pay more attention to the implementation of medical care and education programs for children with DS. Also, informing the community about DS helps to raise awareness and appropriate social interactions among the families and community members.
Full-Text [PDF 424 kb]   (51 Downloads)    

Received: 2019/02/8 | Published: 2019/06/21

References
1. Akolekar R, Beta J, Picciarelli G, Ogilvie C, D'Antonio F. Procedure-related risk of miscarriage following amniocentesis and chorionic villus sampling: A systematic review and meta-analysis. Ultrasound Obstet Gynecol. 2015;45(1):16-26. [Link] [DOI:10.1002/uog.14636]
2. Pitetti K, Baynard T, Agiovlasitis S. Children and adolescents with Down syndrome, physical fitness and physical activity. J Sport Health Sci. 2013;2(1):47-57. [Link] [DOI:10.1016/j.jshs.2012.10.004]
3. Kim HI, Kim SW, Kim J, Jeon HR, Jung DW. Motor and cognitive developmental profiles in children with Down syndrome. Annal Rehabil Med. 2017;41(1):97-103. [Link] [DOI:10.5535/arm.2017.41.1.97]
4. Romley JA, Shah AK, Chung PJ, Elliott MN, Vestal KD, Schuster MA. Family-provided health care for children with special health care needs. Pediatrics. 2017;139(1):e20161287. [Link] [DOI:10.1542/peds.2016-1287]
5. Lemacks J, Fowles K, Mateus A, Thomas K. Insights from parents about caring for a child with birth defects. Int J Environ Res Public Health. 2013;10(8):3465-82. [Link] [DOI:10.3390/ijerph10083465]
6. Kortchmar E, Pinto de Jesus MC, Merighi MAB. Experience of women with a school-age child with Down syndrome. Texto Contexto Enferm. 2014;23(1):13-20. [Link] [DOI:10.1590/S0104-07072014000100002]
7. Hanson MJ. Twenty-five years after early intervention A Follow-up of children with Down syndrome and their families. Infant Young Child. 2003;16(4):354-65. [Link] [DOI:10.1097/00001163-200310000-00008]
8. Hemmati S, Asadi AA, Mirsepasi Z. Family burden and problems in patients with Down syndrome. J Rehab. 2005;6(3):20-4. [Persian] [Link]
9. Abbasi S, Sajedi F, Hemmati S, Najafi Fard T, Azadchehr MJ, Poursadoghi A. Evaluation of quality of life in mothers of children with Down syndrome. J Pract Clin Psychol. 2016;4(2),81-8. [Persian] [Link] [DOI:10.15412/J.JPCP.06040202]
10. Marshall J, Tanner JP, Kozyr YA, Kirby RS. Services and supports for young children with Down syndrome: Parent and provider perspectives. Child Care Health Dev. 2015;41(3):365-73. [Link] [DOI:10.1111/cch.12162]
11. Khankeh H, Ranjbar M, Khorasani-Zavareh D, Zargham-Boroujeni A, Johansson E. Challenges in conducting qualitative research in health: A conceptual paper. Iran J Nurs Midwifery Res. 2015;20(6):635-41. [Link] [DOI:10.4103/1735-9066.170010]
12. Rassafiani M, Pourmohamadrezatajrishi M, Hemmati S, Dadkhah A, Sahaf R, Jalil-Abkenar SS, et al. Family to family training: Theoretical basis and practical example of families having children with Down syndrome. J Family Res. 2012;8(2):173-89. [Persian] [Link]
13. Meho LI. E-mail interviewing in qualitative research: A methodological discussion. J Am Soc Inform Sci TechnoL. 2006;57(10):1284-95. [Link] [DOI:10.1002/asi.20416]
14. Campos CJ, Turato ER. Content analysis in studies using the clinical-qualitative method: Application and perspectives. Rev Lat Am Enfermagem. 2009;17(2):259-64. [Link] [DOI:10.1590/S0104-11692009000200019]
15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-88. [Link] [DOI:10.1177/1049732305276687]
16. Tabatabaee A, Hasani P, Mortazavi H, Tabatabaeichehr M. Strategies to enhance rigor in qualitative research. J North Khorasan Univ Med Sci. 2013;5(3):663-70. [Persian] [Link] [DOI:10.29252/jnkums.5.3.663]
17. Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, et al. Maternal physical and mental health in children with Down syndrome. J Pediatr. 2008;153(3):320-6. [Link] [DOI:10.1016/j.jpeds.2008.02.047]
18. Sheets KB, Crissman BG, Feist CD, Sell SL, Johnson LR, Donahue KC, et al. Practice guidelines for communicating a prenatal or postnatal diagnosis of down syndrome: Recommendations of the National Society Of Genetic Counselors. J Genet Couns. 2011;20(5):432-41. [Link] [DOI:10.1007/s10897-011-9375-8]
19. Huiracocha L, Almeida C, Huiracocha K, Arteaga J, Arteaga A, Blume S. Parenting children with Down syndrome: Societal influences. J Child Health Care. 2017;21(4):488-97. [Link] [DOI:10.1177/1367493517727131]
20. Phillips BA, Conners F, Curtner-Smith ME. Parenting children with down syndrome: An analysis of parenting styles, parenting dimensions, and parental stress. Res Dev Disabil. 2017;68:9-19. [Link] [DOI:10.1016/j.ridd.2017.06.010]
21. Skotko BG, Levine SP, Goldstein R. Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. Am J Med Genet A. 2011;155A(10):2335-47. [Link] [DOI:10.1002/ajmg.a.34293]
22. Reeja Mol R, Sujatha R. Lived Experiences of mothers of children with Down's syndroem in selected schools at Mangalore. Nitte Univ J Health Sci. 2013;3(3):87-92. [Link]
23. Levis DM, Harris S, Whitehead N, Moultrie R, Duwe K, Rasmussen SA. Women's knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study. Am J Med Genet Part A. 2012;158A(6):1355-62. [Link] [DOI:10.1002/ajmg.a.35340]
24. Boulet SL, Molinari NA, Grosse SD, Honein MA, Correa-Villaseñor A. Health care expenditures for infants and young children with Down syndrome in a privately insured population. J Pediatrics. 2008;153(2):241-6. [Link] [DOI:10.1016/j.jpeds.2008.02.046]
25. Geelhoed EA, Bebbington A, Bower C, Deshpande A, Leonard H. Direct health care costs of children and adolescents with Down syndrome. J Pediatrics. 2011;159(4):541-5. [Link] [DOI:10.1016/j.jpeds.2011.06.007]
26. Ahmed S, Bryant LD, Ahmed M, Jafri H, Raashid Y. Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy. J Community Genet. 2013;4(1):107-14. [Link] [DOI:10.1007/s12687-012-0124-y]
27. Daudji A, Eby S, Foo T, Ladak F, Sinclair C, Landry MD, et al. Perceptions of disability among south Asian immigrant mothers of children with disabilities in Canada: Implications for rehabilitation service delivery. Disabi Rehabil. 2011;33(6):511-21. [Link] [DOI:10.3109/09638288.2010.498549]
28. Ahmed KJ, Ahmed M, Jafri HS, Raashid Y, Ahmed S. Pakistani mothers' and fathers' experiences and understandings of the diagnosis of Down syndrome for their child. J Commun Genet. 2015;6(1):47-53. [Link] [DOI:10.1007/s12687-014-0200-6]
29. Skotko BG, Kishnani PS, Capone GT. Prenatal diagnosis of Down syndrome: How best to deliver the news. Am J Med Genet A. 2009;149A(11):2361-7. [Link] [DOI:10.1002/ajmg.a.33082]
30. Nunes MD, Dupas G. Independence of children with Down syndrome: The experiences of families. Rev Lat Am Enfermagem. 2011;19(4):985-93. [Link] [DOI:10.1590/S0104-11692011000400018]
31. Ahmad Khan B, Zargar WA, Najar SA. Negotiating future uncertainty: Concerns of mothers of children with down syndrome in Kashmir, India. Disabil CBR Inclus Dev. 2018;29(1):67-77. [Link] [DOI:10.5463/dcid.v29i1.703]

Add your comments about this article : Your username or Email:
CAPTCHA code

Send email to the article author