This study found elevated levels of depressive symptoms based on established clinical cutoffs of the HADS and CES-D 15,19,20
in caregivers of children with CF who ranged in age from birth to 18. Our findings extend previous studies regarding depression in caregivers of young children with CF.7,8
Furthermore, this is the first study to demonstrate high rates (nearly 50%) of anxious symptoms in caregivers of children with CF.15,16
Female caregivers reported higher rates of both depressive and anxious symptoms than male caregivers. Notably, 30% of female caregivers reported being prescribed medication for depression and/or anxiety. Despite receiving treatment in the form of medication and/or therapy, 50% of female caregivers continued to experience clinically elevated symptoms. In addition, presence of comorbid depressive and anxious symptoms in both female and male caregivers was high. These elevated rates highlight the importance of attending to the psychological functioning of caregivers of children with CF especially because psychological symptoms impact daily tasks,23
as well as adherence to treatment regimens.22–24
Moreover, the highly demanding, costly, and time-consuming treatment regimen associated with caring for a child with CF (e.g., frequent clinic appointments and hospitalizations, lengthy daily treatments) coupled with concern about the child's shortened life expectancy may be factors that contribute to the onset of depressive symptoms in caregivers. Given that the broader pediatric literature has demonstrated a link between parent and child psychological adaptation,25,26
it is also important to examine the role of caregiver depressive and anxious symptoms on similar symptoms in children with CF.
Our results revealed higher rates (i.e., 31%) of depressive symptoms on the CES-D among male caregivers than on the HADS (i.e., 14%), whereas, the two measures revealed comparable rates among female caregivers (i.e., 28% for CES-D, 20% for HADS). It is unclear why rates of depressive symptoms in male caregivers differed based on the measure used. Nevertheless, additional research is needed to determine the utility of the HADS given that a measure of anxiety assessing somatic symptoms was not included in the present study. The decision to use the HADS was pragmatic as its brevity contributed to efficiency of data collection during routine CF Clinic appointments; however, current results support the use of measures that include somatic items (e.g., CES-D, State Trait Anxiety Inventory, Beck Anxiety Inventory) to avoid underestimation of symptoms.
The sample size of male caregivers was modest, which resulted from the fact that female caregivers accompanied their children to CF Clinic appointments more than male caregivers. However, this is one of few studies in CF to assess male caregivers' psychological functioning. Specifically, results indicated that male caregivers reported a greater number of anxious than depressive symptoms. Although we were unable to determine whether the male caregivers who attended CF Clinic differed significantly from those who did not, the fact that they reported elevations of psychological symptoms highlights the importance of attending to the needs of those who did attend and efforts should be made to increase male caregivers' participation in future studies.
Another important finding of the current study was the high symptom rates among female and male caregivers from the same couple; 13% and 46% of couples reported elevated depressive and anxious symptoms, respectively. Again, the sample size of couples was modest, but these rates raise an important issue for future studies. It will be important to determine if higher rates are a result of illness-related factors, such as fewer economic resources, lower family support regarding treatment-related burden, and marital dissatisfaction. Alternatively, symptom contagion27,28
among couples in which one member develops symptoms as a result of the other's symptoms, and assortative pairing in which there is differential association with symptomatic partners29
may play a role too. Factors associated with higher rates of psychological distress in couples are particularly relevant since parents appear more vulnerable to psychological difficulties (e.g., depression) especially when a diagnosis of CF is made within the first few months of life.8
With regard to the relations between caregiver symptoms and health status, better child lung functioning was associated with fewer depressive symptoms and better QOL in female caregivers. These findings suggest that lung functioning may play a greater role in determining caregiver mood as most of the morbidity and mortality in CF is due to respiratory infection and disease. Since female caregivers tend to bear more responsibility for the primary care of children, they could have more difficulty adapting to changes in disease status. Alternatively, it may be that male caregivers are not as attuned to negative health changes on a daily basis because of their potentially more distal role in caregiving. Another explanation is that female caregivers who experience depressive symptoms may not be able to adequately help their children manage CF, leading to poor adherence,23,30,31
and ultimately, worse lung functioning. Future studies involving male caregivers will help to determine the impact of their children's health outcomes (e.g., lung functioning and weight) on their own symptoms of anxiety and depression. Additionally, we did not control for the timing of questionnaire completion in this study. Thus, it is plausible that anticipation of FEV1
% predicted results led to higher symptom endorsement. Alternatively, FEV1
% predicted results learned prior to completion of the questionnaires could have increased or decreased symptom endorsement. Therefore, it will be important to investigate the role of FEV1
% predicted results on immediate reporting of symptoms in future studies. For those caregivers who have a history of depressive or anxious symptoms, effective interventions need to be developed that are time-limited and do not add burden to an already difficult and time-consuming disease management regimen.
Overall, caregivers reported experiencing positive daily functioning and psychological well-being (e.g., QOL32
). Although the caregiver QOL measure used in this study provided only a general indicator of QOL (as opposed to subscales), it is the only CF-specific measure of caregiver QOL in the current literature, a relative strength of the current study. Specific areas potentially impacted by CF, such as social functioning and treatment burden are worthy of future exploration if new measures are developed. Caregiver QOL was associated with both depressive and anxious symptoms, with lower symptoms associated with better QOL, which is likely due to QOL being a broad construct that captures psychological functioning. Although depressive and anxious symptoms uniquely predicted caregiver QOL, even after controlling for whether caregivers were receiving psychological treatment, there was a stronger relation between depressive symptoms and QOL. The cross-sectional nature of the data limits our conclusions about causality and the long-term impact of depressive and anxious symptoms on QOL, as does the lack of an age matched healthy control group. Longitudinal studies that statistically control for initial depressive and anxious symptoms would potentially clarify these issues while accounting for some shared method variance. In addition, prioritizing implementation of interventions for depressive symptoms may lead to improvement in caregiver QOL, as alleviation of anxious symptoms is likely since common treatments are used for both disorders (e.g., cognitive-behavioral therapy, medication).
In conclusion, the results of this study demonstrated a clear need to address the psychological health and well-being of caregivers of children with CF. Assessment of psychological symptoms can be easily incorporated into a routine CF Clinic appointment. The US Preventive Services Task Force recommends routine depression screening among adults.33
Although the best measure to use has not been determined, it appears that using measures such as the CES-D are warranted as part of the routine CF Clinic appointment. Our study suggests that screening measures for anxiety may also be beneficial. CF Teams are in the best position to assist with problem-solving around CF-specific stressors that may contribute to caregiver depressive and anxious symptoms. In addition, assessment of depressive and anxious symptoms presents opportunities for discussion about caregiver psychological health and provision of referrals for comprehensive assessment and intervention.