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How Does Participation of Youth With Spina Bifida Vary by Age?

  • Symposium: Myelomeningocele
  • Published:
Clinical Orthopaedics and Related Research®

Abstract

Background

Youth with disabilities are at risk for decreased participation in community activities. However, little is known about participation at different developmental periods of childhood and adolescence among youth with spina bifida (SB) or whether child, family, and SB-associated factors influence participation.

Questions/purposes

Our cross-sectional study examined participation among youth with SB and assessed how participation differs between youth ages 2–5, 6–12, and 13–18; how participation relates to child (gender) and family (caregiver marital status, education, and employment) characteristics; and how participation relates to SB-related factors (motor level, hydrocephalus, ambulation, medical issues, and bladder/bowel needs).

Patients and Methods

Sixty-three youth ages 2–18 years and/or their caregivers completed age-appropriate measures of participation for youth with disabilities. The patients had an average age of 9.52 years (SD = 5.22), 83% had a shunt, 34% had a motor level of L2 or higher, and 66% L3 or lower.

Results

A comparison of youth ages 2–5 (n = 19), 6–12 (n = 21), and 13–18 (n = 23) revealed older youth participated less in recreational, physical, and skill-based activities. Caregiver employment facilitated participation in social activities. Youth who did not have a shunt participated more often in physical and skill-based activities. Youth without recent major medical issues participated more often in physical and social activities. More caregivers reported bladder and bowel needs as barriers to participation for youth ages 6–12 than those ages 2–5 or 13–18.

Conclusions

Participation of youth with SB varies by age and across child and caregiver factors and should be understood in a developmental and situational context.

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Acknowledgments

We thank the youth and their caregivers who participated in this research.

Author information

Authors and Affiliations

  1. Shriners Hospitals for Children®, 2211 North Oak Park Avenue, Chicago, IL, 60707-3392, USA

    Erin H. Kelly PhD, Haluk Altiok MD, Julie A. Gorzkowski MSW, LSW, Jennifer R. Abrams MSW, LSW & Lawrence C. Vogel MD

  2. University of Illinois at Chicago, Chicago, IL, USA

    Erin H. Kelly PhD

  3. Rush Medical College, Chicago, IL, USA

    Haluk Altiok MD & Lawrence C. Vogel MD

Authors
  1. Erin H. Kelly PhD
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  2. Haluk Altiok MD
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  3. Julie A. Gorzkowski MSW, LSW
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  4. Jennifer R. Abrams MSW, LSW
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  5. Lawrence C. Vogel MD
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Corresponding author

Correspondence to Erin H. Kelly PhD.

Additional information

Each author certifies that he or she has no commercial associations (eg, consultancies, stock ownership, equity interest, patent/licensing arrangements, etc) that might pose a conflict of interest in connection with the submitted article.

This work was funded by Shriners Hospitals for Children®, grant 9143 (LCV).

Each author certifies that his or her institution approved the human protocol for this investigation, that all investigations were conducted in conformity with ethical principles of research, and that informed consent for participation in the study was obtained.

This work was performed at Shriners Hospitals for Children®, Chicago, IL, USA; University of Illinois at Chicago, Chicago, IL, USA; and Rush University, Chicago, IL, USA.

Appendix

Appendix

See Table 7

Table 7 Activities listed in the Children’s Assessment of Participation and Enjoyment (CAPE)* and Assessment of Preschool Children’s Participation (APCP)
Full size table

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Kelly, E.H., Altiok, H., Gorzkowski, J.A. et al. How Does Participation of Youth With Spina Bifida Vary by Age?. Clin Orthop Relat Res 469, 1236–1245 (2011). https://doi.org/10.1007/s11999-010-1693-x

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  • DOI: https://doi.org/10.1007/s11999-010-1693-x

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