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Adaptation in Families of Children with Down Syndrome: A Mixed-methods Design

다운증후군 자녀를 둔 가족의 적응력: 혼합적 연구 방법 적용

  • Choi, Hyunkyung (College of Nursing.The Research Institute of Nursing Science, Kyungpook National University)
  • 최현경 (경북대학교 간호대학.간호과학연구소)
  • Received : 2014.12.23
  • Accepted : 2015.04.01
  • Published : 2015.08.31

Abstract

Purpose: The purpose of this study, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to explore family and parental adaptation and factors influencing family adaptation in Korean families of children with Down syndrome (DS) through a quantitative methodology and (b) to understand the life with a Korean child with DS through a qualitative method. Methods: A mixed-methods design was adopted. A total of 147 parents of children with DS completed a package of questionnaires, and 19 parents participated in the in-depth interviews. Quantitative and qualitative data were analyzed using stepwise multiple regression and content analysis respectively. Results: According to the quantitative data, the overall family adaptation scores indicated average family functioning. Financial status was an important variable in understanding both family and parental adaptation. Family adaptation was best explained by family problem solving and coping communication, condition management ability, and family hardiness. Family strains and family hardiness were the family factors with the most influence on parental adaption. Qualitative data analysis showed that family life with a child with DS encompassed both positive and negative aspects and was expressed with 5 themes, 10 categories, and 16 sub-categories. Conclusion: Results of this study expand our limited knowledge and understanding concerning families of children with DS in Korea and can be used to develop effective interventions to improve the adaptation of family as a unit as well as parental adaptation.

Keywords

References

  1. National Down Syndrome Society. Down syndrome facts [Internet]. New York, NY: National Down Syndrome Society; 2014 [cited 2014 November 2]. Available from: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/.
  2. Choi H, Van Riper M. Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome. Journal of Intellectual Disability Research. 2014;58(10):962-977. http://dx.doi.org/10.1111/jir.12126
  3. Choi EK, Yoo IY. Resilience in families of children with Down syndrome in Korea. International Journal of Nursing Practice. 2014. Forthcoming.
  4. Kim MY. Mothers' adjustments in raising children with down syndrome. Journal of Korean Clinical Nursing Research. 2008;14(2): 19-29.
  5. Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, et al. Physical and mental health in mothers of children with Down syndrome. The Journal of Pediatrics. 2008;153(3):320-326. http://dx.doi.org/10.1016/j.jpeds.2008.02.047
  6. Lam LW, Mackenzie AE. Coping with a child with Down syndrome: The experiences of mothers in Hong Kong. Qualitative Health Research. 2002;12(2):223-237. http://dx.doi.org/10.1177/104973202129119856
  7. Eisenhower AS, Baker BL, Blacher J. Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research. 2005;49(Pt 9):657-671. http://dx.doi.org/10.1111/j.1365-2788.2005.00699.x
  8. Sari HY, Baser G, Turan JM. Experiences of mothers of children with Down syndrome. Paediatric Nursing. 2006;18(4):29-32. http://dx.doi.org/10.7748/paed2006.05.18.4.29.c1024
  9. Wikler L. Chronic stresses of families of mentally retarded children. Family Relations. 1981;30(2):281-288. http://dx.doi.org/10.2307/584142
  10. Van Riper M. Families of children with Down syndrome: Responding to "a change in plans" with resilience. Journal of Pediatric Nursing. 2007;22(2):116-128. http://dx.doi.org/10.1016/j.pedn.2006.07.004
  11. Hodapp RM. Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews. 2007;13(3):279-287. http://dx.doi.org/10.1002/mrdd.20160
  12. McCubbin HI, Thompson AI, McCubbin MA. Family assessment: Resiliency, coping and adaptation: Inventories for research and practice. Madison, WI: University of Wisconsin Publishers; 1996.
  13. Lee HC, Kim YC, Kim KS. Mixed methods research: Qualitative research and quantitative research. Paju: Academypress; 2013.
  14. Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. Journal of Clinical Epidemiology. 1993;46(12): 1417-1432. http://dx.doi.org/10.1016/0895-4356(93)90142-n
  15. Skinner HA, Steinhauer PD, Santa-Barbara J. $FAM-III^{TM}$ Family assessment measure-III. North Tonawanda, NY: Multi-Health Systems Inc.; 1995.
  16. Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Family management measure (FaMM) [Internet]. Chapel Hill, NC: The University of North Carolina at Chapel Hill; 2014 [cited 2014 November 2]. Available from: http://nursing.unc.edu/research/office-of-research-support-consultation/resources/familymanagement-measure-famm/.
  17. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 2004;24(2):105-112. http://dx.doi.org/10.1016/j.nedt.2003.10.001
  18. Olsson MB, Hwang CP. Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual Disability Research. 2008;52(12):1102-1113. http://dx.doi.org/10.1111/j.1365-2788.2008.01081.x
  19. Povee K, Roberts L, Bourke J, Leonard H. Family functioning in families with a child with Down syndrome: A mixed methods approach. Journal of Intellectual Disability Research. 2012;56(10): 961-973. http://dx.doi.org/10.1111/j.1365-2788.2012.01561.x
  20. Trute B, Hiebert-Murphy D, Levine K. Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual Disability Research. 2007;32(1):1-9. http://dx.doi.org/10.1080/13668250601146753
  21. Hsiao CY, Van Riper M. Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing. 2011;17(2):182-201. http://dx.doi.org/10.1177/1074840711405205
  22. Saloviita T, Italinna M, Leinonen E. Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. Journal of Intellectual Disability Research. 2003;47(Pt 4-5):300-312. https://doi.org/10.1046/j.1365-2788.2003.00492.x
  23. Sim MK. Influence of resiliency factors on adaptation in families of children with cancer. Korean Journal of Child Health Nursing. 2004;10(4):383-394.
  24. Clark PC. Effects of individual and family hardiness on caregiver depression and fatigue. Research in Nursing and Health. 2002;25 (1):37-48. http://dx.doi.org/10.1002/nur.10014
  25. Davis K, Gavidia-Payne S. The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual & Developmental Disability. 2009;34(2):153-162. http://dx.doi.org/10.1080/13668250902874608
  26. Jeon MS. Customized service for persons with developmental disabilities will be provided. Ministry of Health & Welfare Press Release [Internet]. Seoul: Ministry of Health & Welfare; 2012 July 13 [cited 2014 November 2]. Available from:http://english.mw.go.kr/front_eng/sg/ssg0111vw.jsp?PAR_MENU_ID=1001&MENU_ID=100111&page=7&CONT_SEQ=274342

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