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.