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. 2000 Oct;83(4):293–297. doi: 10.1136/adc.83.4.293

Quality of life in spina bifida: importance of parental hope

H Kirpalani 1, P Parkin 1, A Willan 1, D Fehlings 1, P Rosenbaum 1, D King 1, A J Van Nie 1
PMCID: PMC1718506  PMID: 10999858

Abstract

BACKGROUND AND AIMS—Prognosis in spina bifida (SB) is often based only on neurological deficits present at birth. We hypothesised that both parental hope and the neurophysical examination predict quality of life in children and adolescents with SB.
METHODS—A previously validated disease and age specific health related quality of life (HRQL) instrument was posted to families of children (aged 5-12 years) and adolescents (aged 13-20 years) with SB. We measured parental hope, determined the child's current physical function, and obtained retrospective data on the neonatal neurophysical examination (NPE). Regression analysis modelled HRQL firstly as a dependent variable on parental hope and NPE ("birth status"); and secondly on parental hope and current physical function ("current function").
RESULTS—Response rates were 71% (137 of 194) for families of children, and 54% (74 of 138) for families of adolescents. NPE data were available for 121 children and 60 adolescents. In children, the birth status model predicted 26% of the variability (R2 hope 21%) compared with 23% of the variability (R2 hope 23%)in the adolescents. The current function model explained 47% of the variability (R2 hope 19%) in children compared with 31% of the variability (R2 hope 24%) in the adolescents.
CONCLUSIONS—In both age groups, parental hope was more strongly associated with the HRQL than neonatal or current physical deficits. A prospective study is required to determine whether a causal relation exists between parental hope and HRQL of children and adolescents with SB.



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Selected References

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  1. Brackney B. E., Westman A. S. Relationships among hope, psychosocial development, and locus of control. Psychol Rep. 1992 Jun;70(3 Pt 1):864–866. doi: 10.2466/pr0.1992.70.3.864. [DOI] [PubMed] [Google Scholar]
  2. Burd L., Vesely B., Martsolf J., Kerbeshian J. Prevalence study of Prader-Willi syndrome in North Dakota. Am J Med Genet. 1990 Sep;37(1):97–99. doi: 10.1002/ajmg.1320370122. [DOI] [PubMed] [Google Scholar]
  3. Cadman D., Goldsmith C., Bashim P. Values, Preferences, and decisions in the care of children with developmental disabilities. J Dev Behav Pediatr. 1984 Apr;5(2):60–64. [PubMed] [Google Scholar]
  4. Calman K. C., Royston G. H. Risk language and dialects. BMJ. 1997 Oct 11;315(7113):939–942. doi: 10.1136/bmj.315.7113.939. [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Castree B. J., Walker J. H. The young adult with spina bifida. Br Med J (Clin Res Ed) 1981 Oct 17;283(6298):1040–1042. doi: 10.1136/bmj.283.6298.1040. [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Charney E. B., Weller S. C., Sutton L. N., Bruce D. A., Schut L. B. Management of the newborn with myelomeningocele: time for a decision-making process. Pediatrics. 1985 Jan;75(1):58–64. [PubMed] [Google Scholar]
  7. Croaker G. D., Shi E., Simpson E., Cartmill T., Cass D. T. Congenital central hypoventilation syndrome and Hirschsprung's disease. Arch Dis Child. 1998 Apr;78(4):316–322. doi: 10.1136/adc.78.4.316. [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Duff R. S., Campbell A. G. Moral and ethical dilemmas in the special-care nursery. N Engl J Med. 1973 Oct 25;289(17):890–894. doi: 10.1056/NEJM197310252891705. [DOI] [PubMed] [Google Scholar]
  9. Evans R. C., Tew B., Thomas M. D., Ford J. Selective surgical management of neural tube malformations. Arch Dis Child. 1985 May;60(5):415–419. doi: 10.1136/adc.60.5.415. [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Fehring R. J., Miller J. F., Shaw C. Spiritual well-being, religiosity, hope, depression, and other mood states in elderly people coping with cancer. Oncol Nurs Forum. 1997 May;24(4):663–671. [PubMed] [Google Scholar]
  11. Foote A. W., Piazza D., Holcombe J., Paul P., Daffin P. Hope, self-esteem and social support in persons with multiple sclerosis. J Neurosci Nurs. 1990 Jun;22(3):155–159. doi: 10.1097/01376517-199006000-00004. [DOI] [PubMed] [Google Scholar]
  12. Gross R. H. Newborns with myelodysplasia--the rest of the story. N Engl J Med. 1985 Jun 20;312(25):1632–1634. doi: 10.1056/NEJM198506203122509. [DOI] [PubMed] [Google Scholar]
  13. Guyatt G. H., Feeny D. H., Patrick D. L. Measuring health-related quality of life. Ann Intern Med. 1993 Apr 15;118(8):622–629. doi: 10.7326/0003-4819-118-8-199304150-00009. [DOI] [PubMed] [Google Scholar]
  14. Harrison H. The principles for family-centered neonatal care. Pediatrics. 1993 Nov;92(5):643–650. [PubMed] [Google Scholar]
  15. Heim P., Claussen M., Hoffmann B., Conzelmann E., Gärtner J., Harzer K., Hunneman D. H., Köhler W., Kurlemann G., Kohlschütter A. Leukodystrophy incidence in Germany. Am J Med Genet. 1997 Sep 5;71(4):475–478. [PubMed] [Google Scholar]
  16. Hirth A. M., Stewart M. J. Hope and social support as coping resources for adults waiting for cardiac transplantation. Can J Nurs Res. 1994 Fall;26(3):31–48. [PubMed] [Google Scholar]
  17. Hunt G., Lewin W., Gleave J., Gairdner D. Predictive factors in open myelomeningocele with special reference to sensory level. Br Med J. 1973 Oct 27;4(5886):197–201. doi: 10.1136/bmj.4.5886.197. [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Kirkpatrick H., Landeen J., Byrne C., Woodside H., Pawlick J., Bernardo A. Hope and schizophrenia: clinicians identify hope-instilling strategies. J Psychosoc Nurs Ment Health Serv. 1995 Jun;33(6):15–19. doi: 10.3928/0279-3695-19950601-04. [DOI] [PubMed] [Google Scholar]
  19. Kirshner B., Guyatt G. A methodological framework for assessing health indices. J Chronic Dis. 1985;38(1):27–36. doi: 10.1016/0021-9681(85)90005-0. [DOI] [PubMed] [Google Scholar]
  20. Larson E. Reframing the meaning of disability to families: the embrace of paradox. Soc Sci Med. 1998 Oct;47(7):865–875. doi: 10.1016/s0277-9536(98)00113-0. [DOI] [PubMed] [Google Scholar]
  21. Laurence K. M. Effect of early surgery for spina bifida cystica on survival and quality of life. Lancet. 1974 Feb 23;1(7852):301–304. doi: 10.1016/s0140-6736(74)92606-3. [DOI] [PubMed] [Google Scholar]
  22. Lorber J. Results of treatment of myelomeningocele. An analysis of 524 unselected cases, with special reference to possible selection for treatment. Dev Med Child Neurol. 1971 Jun;13(3):279–303. [PubMed] [Google Scholar]
  23. Lorber J. Spina bifida cystica. Results of treatment of 270 consecutive cases with criteria for selection for the future. Arch Dis Child. 1972 Dec;47(256):854–873. doi: 10.1136/adc.47.256.854. [DOI] [PMC free article] [PubMed] [Google Scholar]
  24. Mapstone T. B., Rekate H. L., Nulsen F. E., Dixon M. S., Jr, Glaser N., Jaffe M. Relationship of CSF shunting and IQ in children with myelomeningocele: a retrospective analysis. Childs Brain. 1984;11(2):112–118. doi: 10.1159/000120166. [DOI] [PubMed] [Google Scholar]
  25. McClure R. J., Davis P. M., Meadow S. R., Sibert J. R. Epidemiology of Munchausen syndrome by proxy, non-accidental poisoning, and non-accidental suffocation. Arch Dis Child. 1996 Jul;75(1):57–61. doi: 10.1136/adc.75.1.57. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. McCormick M. C., Charney E. B., Stemmler M. M. Assessing the impact of a child with spina bifida on the family. Dev Med Child Neurol. 1986 Feb;28(1):53–61. doi: 10.1111/j.1469-8749.1986.tb03831.x. [DOI] [PubMed] [Google Scholar]
  27. McLaughlin J. F., Shurtleff D. B., Lamers J. Y., Stuntz J. T., Hayden P. W., Kropp R. J. Influence of prognosis on decisions regarding the care of newborns with myelodysplasia. N Engl J Med. 1985 Jun 20;312(25):1589–1594. doi: 10.1056/NEJM198506203122501. [DOI] [PubMed] [Google Scholar]
  28. Menzies R. G., Parkin J. M., Hey E. N. Prognosis for babies with meningomyelocele and high lumbar paraplegia at birth. Lancet. 1985 Nov 2;2(8462):993–995. doi: 10.1016/s0140-6736(85)90535-5. [DOI] [PubMed] [Google Scholar]
  29. Miller J. F. Hope-inspiring strategies of the critically ill. Appl Nurs Res. 1989 Feb;2(1):23–29. doi: 10.1016/s0897-1897(89)80021-7. [DOI] [PubMed] [Google Scholar]
  30. Miller J. F., Powers M. J. Development of an instrument to measure hope. Nurs Res. 1988 Jan-Feb;37(1):6–10. [PubMed] [Google Scholar]
  31. Molassiotis A., Van Den Akker O. B., Milligan D. W., Goldman J. M. Symptom distress, coping style and biological variables as predictors of survival after bone marrow transplantation. J Psychosom Res. 1997 Mar;42(3):275–285. doi: 10.1016/s0022-3999(96)00298-x. [DOI] [PubMed] [Google Scholar]
  32. Noetzel M. J. Myelomeningocele: current concepts of management. Clin Perinatol. 1989 Jun;16(2):311–329. [PubMed] [Google Scholar]
  33. Parkin P. C., Kirpalani H. M., Rosenbaum P. L., Fehlings D. L., Van Nie A., Willan A. R., King D. Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res. 1997 Mar;6(2):123–132. doi: 10.1023/a:1026486016212. [DOI] [PubMed] [Google Scholar]
  34. Piazza D., Holcombe J., Foote A., Paul P., Love S., Daffin P. Hope, social support and self-esteem of patients with spinal cord injuries. J Neurosci Nurs. 1991 Aug;23(4):224–230. doi: 10.1097/01376517-199108000-00008. [DOI] [PubMed] [Google Scholar]
  35. Pless I. B., Feeley N., Gottlieb L., Rowat K., Dougherty G., Willard B. A randomized trial of a nursing intervention to promote the adjustment of children with chronic physical disorders. Pediatrics. 1994 Jul;94(1):70–75. [PubMed] [Google Scholar]
  36. Pollitt R. J., Leonard J. V. Prospective surveillance study of medium chain acyl-CoA dehydrogenase deficiency in the UK. Arch Dis Child. 1998 Aug;79(2):116–119. doi: 10.1136/adc.79.2.116. [DOI] [PMC free article] [PubMed] [Google Scholar]
  37. Rasmussen F., Lie H. R., Hagelsteen J. H., Lagergren J., Börjeson M. C., Lagerkvist B., Köhler L. Nordic children with myelomeningocele. Parents' assessments of the handicap and physicians' classifications of the disabilities. Acta Paediatr. 1993 Mar;82(3):276–280. doi: 10.1111/j.1651-2227.1993.tb12659.x. [DOI] [PubMed] [Google Scholar]
  38. Richards I. D., McIntosh H. T. Spina bifida survivors and their parents: a study of problems and services. Dev Med Child Neurol. 1973 Jun;15(3):292–304. [PubMed] [Google Scholar]
  39. Stark G. D., Drummond M. Results of selective early operation in myelomeningocele. Arch Dis Child. 1973 Sep;48(9):676–683. doi: 10.1136/adc.48.9.676. [DOI] [PMC free article] [PubMed] [Google Scholar]
  40. Takayanagi K., Suruga K. New approach to assess quality of life in neonatal surgical cases: medical providers' subjective assessment of disease- and condition-related factors, using the linear analogue scale. J Pediatr Surg. 1994 May;29(5):659–662. doi: 10.1016/0022-3468(94)90735-8. [DOI] [PubMed] [Google Scholar]
  41. Taylor S. E., Brown J. D. Illusion and well-being: a social psychological perspective on mental health. Psychol Bull. 1988 Mar;103(2):193–210. [PubMed] [Google Scholar]
  42. Tolarova M. M., Harris J. A., Ordway D. E., Vargervik K. Birth prevalence, mutation rate, sex ratio, parents' age, and ethnicity in Apert syndrome. Am J Med Genet. 1997 Nov 12;72(4):394–398. doi: 10.1002/(sici)1096-8628(19971112)72:4<394::aid-ajmg4>3.0.co;2-r. [DOI] [PubMed] [Google Scholar]
  43. Wake M. M., Miller J. F. Treating hopelessness: nursing strategies from six countries. Clin Nurs Res. 1992 Nov;1(4):347–365. doi: 10.1177/105477389200100405. [DOI] [PubMed] [Google Scholar]
  44. Walter J. H., Collins J. E., Leonard J. V. Recommendations for the management of galactosaemia. UK Galactosaemia Steering Group. Arch Dis Child. 1999 Jan;80(1):93–96. doi: 10.1136/adc.80.1.93. [DOI] [PMC free article] [PubMed] [Google Scholar]

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