DOI QR코드

DOI QR Code

Mothers' Perceived Difficulties in the Management of Chronic Conditions of Children with Spina Bifida: A Qualitative Descriptive Approach

이분척추 환아의 어머니가 인식한 질병관리의 어려움: 질적 서술적 접근

  • Lim, Seoung-Wha (College of Nursing Seoul National University) ;
  • Yi, Myungsun (College of Nursing, Research Institute of Nursing Science, Seoul National University)
  • 임승화 (서울대학교 간호대학) ;
  • 이명선 (서울대학교 간호대학.간호과학 연구소)
  • Received : 2016.07.26
  • Accepted : 2016.08.19
  • Published : 2016.10.31

Abstract

Purpose: The purpose of the study was to identify and describe the caregiving difficulties that mothers of children with spina bifida experience from their own perspectives. Methods: A qualitative descriptive study was designed. Data were collected from five mini-focus group interviews and four individual interviews using open-ended questions. Nineteen mothers of children with mild spina bifida participated in the study during 2014-2015. Data were analyzed using qualitative content analysis to identify major difficulties perceived by the mothers. Results: Five domains were identified with 12 subdomains. "Daily routine continence management" describes difficulties arising in bladder and bowel management for the child with spina bifida. "Management of school life of child" deals with difficulties in relation to the school facilities, such as the toilets, as well as teachers and friends. "Relationship with family and neighbors" illustrates problems in relations with their spouse, normal children, relatives and neighbors. "Maintaining physical and psychological health" includes physical and psychological problems of the mothers. "Finance" describes economic burden that the mothers face in the management of child's illness. Conclusion: The findings from this study provide insight into the practical issues related to the management of chronic conditions of children with spina bifida from the mothers' perspectives.

Keywords

References

  1. Botto LD, Moore CA, Khoury MJ, Erickson JD. Neural-tube defects. New England Journal of Medicine. 1999;341(20):1509-1519. http:// dx.doi.org/10.1056/NEJM199911113412006
  2. de Jong TR. Deliberate termination of life of newborns with spina bifida, a critical reappraisal. Child's Nervous System. 2008;24(1):13-28. http://dx.doi.org/10.1007/s00381-007-0478-3
  3. Bowman RM, Boshnjaku V, McLone DG. The changing incidence of myelomeningocele and its impact on pediatric neurosurgery: A review from the Children's Memorial Hospital. Child's Nervous System. 2009;25(7):801-806. http://dx.doi.org/10.1007/s00381-009-0865-z
  4. Sawin KJ, Liu T, Ward E, Thibadeau J, Schechter MS, Soe MM, et al. The national spina bifida patient registry: Profile of a large cohort of participants from the first 10 clinics. The Journal of Pediatrics. 2015;166(2):444-450. e1. http://dx.doi.org/10.1016/j.jpeds.2014.09.039
  5. Dicianno BE, Kurowski BG, Yang JMJ, Chancellor MB, Bejjani GK, Fairman AD, et al. Rehabilitation and medical management of the adult with spina bifida. American Journal of Physical Medicine & Rehabilitation. 2008; 87(12):1027-1050. http://dx.doi.org/10.1097/PHM.0b013e31818de070
  6. Liptak GS, Garver K, Dosa NP. Spina bifida grown up. Journal of Developmental & Behavioral Pediatrics. 2013;34(3):206-215. http://dx.doi. org/10.1097/DBP.0b013e31828c5f88.
  7. Roach JW, Short BF, Saltzman HM. Adult consequences of spina bifida: A cohort study. Clinical Orthopaedics and Related $Research^{(R)}$. 2011; 469(5):1246-1252. http://dx.doi.org/10.1007/s11999-010-1594-z
  8. Fischer N, Church P, Lyons J, McPherson A. A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation. Child: Care, Health and Development. 2015;41(6):954-962. http://dx.doi.org/10.1111/cch.12257
  9. Simeonsson RJ, McMillen JS, Huntington GS. Secondary conditions in children with disabilities: Spina bifida as a case example. Mental Retardation and Developmental Disabilities Research Rreviews. 2002; 8(3):198-205. http://dx.doi.org/10.1002/mrdd.10038
  10. Kanaheswari Y, Razak N, Chandran V, Ong L. Predictors of parenting stress in mothers of children with spina bifida. Spinal Cord. 2011; 49(3):376-380. http://dx.doi.org/10.1038/sc.2010.125
  11. Innocenti MS, Huh K, Boyce GC. Families of children with disabilities: Normative data and other considerations on parenting stress. Topics in Early Childhood Special Education. 1992;12(3):403-427. http://dx.doi.org/10.1177/027112149201200310
  12. Civilibal M, Suman M, Elevli M, Duru NS. The quality of life of mothers of children with spina bifida. Journal of Pediatric Orthopaedics B. 2014;23(4):319-321. http://dx.doi.org/10.1097/BPB.0000000000000063
  13. HJ Y. Factors related to self-management behaviors of children with spina bifida: A mixed-method approach [dissertation]. Seoul. Yonsei University; 2013. p. 79-80.
  14. Lim SW, Lee HE, Davis M, Park K. Perceived barriers and difficulties of intermittent catheterization: In Korean patients with spinal dysraphism and their parents. Neurourology and Urodynamics. 2016; 35(3):395-9. http://dx.doi.org/10.1002/nau.22716
  15. Choi E, Shin S, Im Y, Kim M, Han S. The effects of transanal irrigation as a stepwise bowel management program on the quality of life of children with spina bifida and their caregivers. Spinal Cord. 2013; 51(5):384-388. http://dx.doi.org/10.1038/sc.2013.8
  16. Choi EK, Im YJ, Han SW. Bowel management and quality of Life in children with spina bifida in South Korea. Gastroenterology Nursing: 2015. http://dx.doi.org/10.1097/SGA.0000000000000135
  17. Sandelowski M. Focus on research methods-whatever happened to qualitative description? Research in Nursing and Health. 2000;23(4): 334-340. http://dx.doi.org/10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G
  18. Onwuegbuzie AJ, Dickinson WB, Leech NL, Zoran AG. A qualitative framework for collecting and analyzing data in focus group research. International Journal of Qualitative Methods. 2009;8(3):1-21. http:// dx.doi.org/10.1002/1098-240X(200008)23:43.0.CO;2-G
  19. Lambert SD, Loiselle CG. Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing. 2008; 62(2):228-237. http://dx.doi.org/10.1111/j.1365-2648.2007.04559.x
  20. Krueger RA, Casey MA. A practical guide for applied research. A practical guide for applied research. 2000. 3rd ed. London: Sage Publication; 2000. p132-137.
  21. Sandelowski M. The problem of rigor in qualitative research. Advances in Nursing Science. 1986;8(3):27-37. http://dx.doi.org/10.1097/ 00012272-198604000-00005
  22. Smith J, Cheater F, Bekker H. Parents' experiences of living with a child with a long-term condition: A rapid structured review of the literature. Health Expectations. 2015;18(4):452-474. http://dx.doi.org/10.1111/ hex.12040.
  23. Singh DK. Families of children with spina bifida: A review. Journal of Developmental and Physical Disabilities. 2003;15(1):37-55. http:// dx.doi.org/10.1023/A:1021452220291
  24. Brustrom J, Thibadeau J, John L, Liesmann J, Rose S. Care coordination in the spina bifida clinic setting: Current practice and future directions. Journal of Pediatric Health Care. 2012;26(1):16-26. http://dx.doi. org/10.1016/j.pedhc.2010.06.003
  25. Dunleavy MJ. The role of the nurse coordinator in spina bifida clinics. The Scientific World Journal. 2007;7:1884-1889. http://dx.doi.org/10.1100/ tsw.2007.305.
  26. Katrancha ED. Clean intermittent catheterization in the school setting. The Journal of School Nursing. 2008;24(4):197-204. http://dx.doi. org/10.1177/1059840508319865
  27. Bray L, Sanders C. Teaching children and young people intermittent self-catheterization. Urologic Nursing. 2007;27(3):203-209.
  28. Holmdahl G, Sillen U, Abrahamsson K, Hellstrom A, Kruse S, Solsnes E. Self-catheterization during adolescence: What are the problems?. Scandinavian Journal of Urology and Nephrology. 2007;41(3):214-217. http://dx.doi.org/10.1080/00365590601017493.
  29. Sawin KJ, Bellin MH, Roux G, Buran C, Brei TJ, Fastenau PS. The experience of parenting an adolescent with spina bifida. Rehabilitation Nursing. 2003;28(6):173-185. http://dx.doi.org/10.1002/j.2048- 7940.2003.tb02057.x