(295) Measuring caregiver stress and perceived self-efficacy during a worldwide pandemic

Background: Anxiety and depression levels are significant in caregivers of young people with cystic fibrosis (pwCF).^[1] Literature also shows that perceived self-efficacy (a person’s beliefs about their capabilities) is lower in caregivers of children with chronic illness; particularly with increased stress, lack of resources, or ambiguity related to illness course.^[2,3] To date, there are few studies looking at the pandemic effects on self-efficacy in caregivers and children. Given the national distress, school closures, and uncertainty of the SARS-CoV-2 (COVID-19) pandemic, our team aimed to investigate effects on caregivers of young pwCF (< 18 years) at our CF center; particularly their perceived stress, anxiety and self-efficacy.

Methods: An anonymous survey utilizing REDCap was developed to look at descriptive features of caregiver demographics, number of children in the home with CF, and perceptions related to COVID-19 and how it affected their lifestyle. Caregivers completing the survey rated their current stress, anxiety, and depression levels. The PROMIS® self-efficacy tool, which is a validated measure of perceived self-efficacy, was incorporated into the survey. Most response options were on a Likert scale. The survey was available electronically through hyper-link and a QR scan code.

Results: A total of 17 caregivers responded to our initial survey. 82% of respondents reported COVID-19 had significantly affected their lives. 41% experienced financial hardship, 53% answered they were feeling "more" or "much more" anxious, 76% answered feeling angrier. 94% caregivers reported “more” or “much more” stress than before the pandemic. Many survey responders were worried about spreading illness to their children, or being unable to care for their child. The perceived self-efficacy scores were average to high in the majority of caregivers, indicating confidence in their abilities to manage difficult situations. Demographics of the respondents were skewed towards female gender, higher education, and private insurance.

Conclusions: This is the first known descriptive study to look at effects of a worldwide pandemic on caregivers of young pwCF. To date, it also is one of few studies examining caregiver perceived self-efficacy in CF. Our study is limited by the number of responses, skewed demographics of those who responded, and only at a single CF center. We did find that caregivers of pwCF at our center, are experiencing higher rates of stress, anxiety, and anger. This did not seem to negatively impact their perceived self-efficacy, although we acknowledge no pre-pandemic measurement. We learned we need to find ways in which to reach a larger demographic and those who are underrepresented. This study shows the need to better understand our caregivers’ emotional distress, especially during times of ambiguity. Understanding caregiver stress, and perceived self-efficacy has the potential to provide insight for the medical team on supportive ways to abate negative outcomes in young pwCF.


Acknowledgements:

References: [1] Quittner AL, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study. Thorax. 2014 Dec;69(12):1090-7.
[2] Gomes et al. Association of self-efficacy of parents/caregivers with childhood asthma control parameters. Rev Esc Enferm. 2017;51.
[3] Jones et al. Self-efficacy in managing chronic respiratory disease: parents' experiences. Contemp Nurse. 2016 Apr-Jun;52(2-3):341-51.