Caregiver well-being and child quality of life

Abstract

Objective: To describe the impact of otitis media on the child's family and caregiver, and how this impact influences the caregiver's perception of child's quality of life (QOL) and functional health status (FHS).

Study design and setting: Prospective study of children aged 6 months to 12 years with recurrent or chronic otitis media recruited from a primary care pediatrics practice and a referral-based pediatric otolaryngology practice. Survey measures were assessed for test-retest reliability, internal consistency, and validity. Multiple regression analysis was used to explore relationships.

Results: We enrolled 159 families, with mean age of 3.3 years for the child and 34 years for the caregiver. Most caregivers attended college (80%) and 64% were employed. The Caregiver Impact Questionnaire (CIQ) had good test-retest reliability (r=0.83), internal consistency (alpha=0.88), and construct validity (r=0.37 to 0.62). Most caregivers (52%) were nervous or agitated at least "some of the time" because of their child's ear problems, 29% lost sleep "a good bit of time," and 56% had to change daily activities. Multivariate analysis showed that caregiver QOL explained 62% of variability in child disease-specific QOL, and that caregiver FHS explained up to 45% of the variability in child FHS.

Conclusion: The 6-item CIQ survey permits a valid and reliable assessment of otitis media impact on caregivers and family functioning. Caregiver ratings of child QOL and FHS are largely influenced by caregiver perceptions of their own personal situation.

Significance: The caregiver QOL and FHS should be considered when using proxy-completed surveys to assess the impact of otitis media on children.