Caregiver burden and vocational participation among parents of adolescents with CF

Abstract

Aim Cystic fibrosis (CF) require parents to make significant lifestyle changes to accommodate their children's treatments. We examined the impact of CF-related caregiving on parents' occupational adjustment and labor supply in terms of organizational changes, presenteeism, and absenteeism. Methods Nineteen Italian CF referral centers joined the LINFA group. We enrolled 168 adolescents with the disease and their parents (n = 225) in a cross-sectional survey research. Patients and their parents answered a self-administered questionnaire (child: SF-12, satisfaction with life, MRC Dyspnea scale; parent: caregiver burden scale, short depression-happiness scale, self-rated health, socio-demographic factors). A pediatrician recorded clinical information (pulmonary exacerbations, CF-related complications, treatment, BMI percentile, Fev1%). Results Patients mean age was 16 ± 2.6 and mean BMI percentile was 42.1 ± 29.1; 92 patients (55%) had FEV1% > 80. Mean parents' age was 45.9 ± 5.9 years, and 59% were women; 75% of women and 24% of men reported to be the primary caregiver. Only 12% had a graduate or post-graduate degree and 56.4% were employed. Approximately 34% of parents reported short depression-happiness scale scores suggestive of clinical depression. Higher caregiving strain was associated with increased likelihood of changing job, work shift schedule, or giving up career opportunities in order to fulfill their caregiving role and increased productivity losses due to family leaves and presenteeism. Conclusion Caregiving burden is a relevant and frequent issue among parents of adolescent patients with cystic fibrosis. We showed that the humanistic and vocational impact of caring for young patients with the disease is striking and demands health-care and welfare supportive actions. Pediatr Pulmonol. 2016;51:243-252.