484 - Well-Being Among Caregivers of Children with Medical Complexity in a Complex Care Program

Publication Number: 1464.484

Jessica Schnell, Medical College of Wisconsin, Milwaukee, WI, United States; Nicole Bungert, Marquette University, Milwaukee, WI, United States; Astrida Kaugars, Mar, Milwaukee, WI, United States; Heidi Kloster, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; K. Jane Lee, Medical College of Wisconsin, Hartland, WI, United States; Johanna R. Michlig, Marquette University, Milwaukee, WI, United States; Sara K. Quates, Medical College of Wisconsin, Milwaukee, WI, United States; Molly Paul, Children's Hospital of Wisconsin, Milwaukee, WI, United States; Gemma Warner, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Elaina J. Schueler, Medical College of Wisconsin, MILWAUKEE, WI, United States

Background: Caregivers of children with medical complexity (CMC) are at risk for increased stress, depression, and anxiety due to the demands of caregiving. Complex care programs (CCPs) seek to mitigate caregiver stress by assisting with care coordination and medical management of CMC.

Objective: The objective of the present analyses was to examine associations among scores assessing aspects of caregiver well-being in caregivers of CMC enrolled in a CCP. These analyses were completed in the context of a larger study to validate a new measure, the Complex Care Program- Family Impact Questionnaire (CCP-FIQ).

Design/Methods: Caregivers of CMC (N = 278; mean age = 39.07 years, SD = 8.52; 95.00% women; 72.7% White, 10.4% Black, 10.1% Hispanic, < 6.2% other) from two CCPs completed the following questionnaires online: Patient-Reported Outcomes Measurement Information System (PROMIS) Emotional Distress – Anxiety (ED-A) and Depression (ED-D) scales, CCP-FIQ, University of Washington Caregiver Stress Scale (UWCSS), Caregiver Strain Questionnaire-Short From (CSQ-SF), and demographic questions. Preliminary analyses included Pearson product-moment correlations to examine associations among constructs assessing caregiver well-being.

Results: Greater caregiver anxiety and depression (PROMIS ED-A and D) were associated with poorer caregiver well-being and family well-being (CCP-FIQ) and greater caregiver stress (UWCSS), objective caregiver strain (CSQ-SF), and subjective internalized and externalized caregiver strain (CSQ-SF), r’s -.16-.51; p < .01 - .001. Additional analyses underway will examine how social vulnerability is associated with caregiver well-being and CCP impact.

Conclusion(s): Associations among various measures of caregiver well-being highlight that caregiver wellbeing, including symptoms of depression and anxiety and the stress and strain of caregiving, are related to their experiences of participating in a CCP. As the CCP-FIQ was designed to assess how participating in a CCP affects families, these results suggest that additional interventions embedded in CCP workflows should address caregiver stressors and emotional distress. Such interventions may include regular assessment of caregiver well-being at routine CCP visits or embedding counseling or psychology services within CCPs.