Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility

ABSTRACT

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings. Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 ± 4.5, range 2–21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI). Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 ± 1.3, p < 0.05) than mothers of children who can walk (mean CSI score 4.5 ± 3.0, p < 0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II). Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

KEYWORDS.:

• GMFCS
• low resource setting
• mothers