Abstract

SummaryLittle is known about depressive and anxious symptoms and quality of life (QOL) in caregivers of children with cystic fibrosis (CF). The aims of this study were to: (1) assess rates of female and male caregiver depressive and anxious symptoms, and (2) evaluate relations between depressive and anxious symptoms, caregiver QOL, and health outcomes.Patients and MethodsEligible participants were caregivers of children with CF who completed three questionnaires assessing depressive and anxious symptoms and caregiver QOL during routine CF Clinic appointments.ResultsRates of depressive and anxious symptoms were elevated in female and male caregivers of children with CF. Rates were higher for anxious (51% for females, 43% for males) than depressive symptoms (20–28% for females; 14–31% for males). Female caregiver depressive symptoms increased as child lung functioning decreased. As depressive and anxious symptoms increased, caregiver QOL decreased. In addition, female caregiver depressive and anxious symptoms were positively correlated with male caregiver anxious and depressive symptoms in a small subsample of couples. CF disease severity and caregiver depressive symptoms predicted caregiver QOL.ConclusionRates of depressive and anxious symptoms are high among caregivers of children with CF. The results of this study highlight the need to screen for female and male caregiver depressive and anxious symptoms in the CF Clinic as CF Team members are well positioned to provided assistance around solving CF-related challenges. In addition, alleviation of depressive and anxious symptoms could potentially lead to improvements in the psychological functioning and well-being of caregivers of children with CF. Pediatr Pulmonol. 2009; 44:784–792. © 2009 Wiley-Liss, Inc.

Highlights

  • Cystic fibrosis (CF) is diagnosed in 1 in $3,400 people in the United States.[1,2,3] It is the most common lifeshortening, autosomal recessive disorder among Caucasians and affects $30,000 children and adults in the United States.[3]

  • Caregivers of children with CF may experience a variety of significant stressors such as guilt for having passed a genetic disease to one’s child, quarterly appointments with CF healthcare teams, timeconsuming and complex treatment regimens, hospitalizations due to pulmonary exacerbations, marital role strain, decreased amount of time spent in recreational activities and with other family members, and shortened life expectancy of the child.[4,5]

  • Increased disease-related stressors and caregiver burden can potentially lead to poor parental adaptation,[6] such as increased depressive and anxious symptoms and decreased caregiver quality of life (QOL)

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Summary

Introduction

Cystic fibrosis (CF) is diagnosed in 1 in $3,400 people in the United States.[1,2,3] It is the most common lifeshortening, autosomal recessive disorder among Caucasians and affects $30,000 children and adults in the United States.[3] Caregivers (e.g., biological parents, grandparents, foster parents, etc.) of children with CF may experience a variety of significant stressors such as guilt for having passed a genetic disease to one’s child, quarterly appointments with CF healthcare teams, timeconsuming and complex treatment regimens, hospitalizations due to pulmonary exacerbations, marital role strain, decreased amount of time spent in recreational activities and with other family members, and shortened life expectancy of the child.[4,5] Increased disease-related stressors and caregiver burden can potentially lead to poor parental adaptation,[6] such as increased depressive and anxious symptoms and decreased caregiver quality of life (QOL). A limited number of studies have assessed depressive symptoms in caregivers of children with CF. With 36–44% of female caregivers experiencing ß 2009 Wiley-Liss, Inc

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