Caregiver burden and vocational participation among parents of adolescents with XXXX .

@entity1 @entity308 @entity1577 @entity1353
AIM: @entity1577 ( @entity1577 ) require parents to make significant lifestyle changes to accommodate their @entity1 's treatments. We examined the impact of @entity1577 -related caregiving on parents' occupational adjustment and labor supply in terms of organizational changes, presenteeism, and absenteeism. METHODS: Nineteen Italian @entity1577 referral centers joined the LINFA group. We enrolled 168 adolescents with the disease and their parents (n   =   225) in a cross-sectional survey research. @entity1 and their parents answered a self-administered questionnaire ( @entity1 : SF-12, satisfaction with life, MRC @entity1353 scale; parent: caregiver burden scale, short @entity308 -happiness scale, self-rated health, socio-demographic factors). A pediatrician recorded clinical information (pulmonary exacerbations, @entity1577 , treatment, BMI percentile, Fev1 %). RESULTS: @entity1 mean age was 16        2.6 and mean BMI percentile was 42.1        29.1; 92 @entity1 (55%) had FEV1 %   >   80. Mean parents' age was 45.9        5.9 years, and 59% were @entity1 ; 75% of @entity1 and 24% of @entity1 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 @entity308 -happiness scale scores suggestive of clinical @entity308 . 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 @entity1 with @entity1577 . We showed that the humanistic and vocational impact of caring for young @entity1 with the disease is striking and demands health-care and welfare supportive actions. Pediatr Pulmonol. 2016;51:243-252.    2015 Wiley Periodicals, Inc.
