Caregiver burden of parents of young children with cystic fibrosis

Background There is a paucity of research examining the impact of informal caregiving on parents of young children with cystic fibrosis (CF). The aim of this study was to examine caregiver burden and identify risk factors associated with high caregiver burden in mothers and fathers of young children with CF. Methods This was a cross-sectional study of parents of young children with CF. A total of 213 families were invited to complete the CarerQoL questionnaire, a validated tool composed of two parts: (i) the CarerQol-7D which describes the care situation in terms of the negative and positive effects of caregiving and (ii) the visual analogue scale (VAS) which measures happiness on a scale from 0 to 10 (0=completely unhappy and 10=completely happy). The utility score (US) is a weighted average of the subjective burden derived from the CarerQol-7D (0−100); higher US indicates reduced burden. Differences in mother-father dyad median utility scores were examined using Wilcoxon signed rank test. Generalised linear mixed models were used to identify factors associated with high caregiver burden. Results At least one parent from 195 families completed the questionnaire (130 mother-father dyads, 189 mothers and 137 fathers). Fathers had a significantly higher median utility score than mothers [(89.2 (IQR 79.6–96.5) vs. 84.7 (74.5–88.0) p<0.001]. Factors found to be significantly associated with higher caregiver burden were increasing child age (OR 1.02; CI: 1.00–1.04), having a child ever positive for Pseudomonas aeruginosa (Pa) (OR 2.48; CI: 1.30–4.73) and being a mother (OR 1.65; CI: 1.02–2.65). Conclusions This study contributes new findings to the sparse literature on caregiver burden of parents of young children with CF. Increasing child age and infection with Pa, associated with higher morbidity, were linked to greater parental burden.