Allostatic Load Borne by Caregivers of Children with Serious Conditions: Acceptability of Self-Reported Data.

BACKGROUND

Stress due to a child's serious medical condition affects the entire family. The cumulative stress burden ("allostatic load") has deleterious health and economic effects.

OBJECTIVE

Demonstrate adequate caregiver willingness to disclose health care utilization and work/school attendance.

SETTING/SUBJECTS: We enrolled caregivers of well children (WC), children with medical complexity (CMC), and children receiving palliative care (PC) (N = 15; 5 per group) in a midwestern United States pediatric hospital.

MEASUREMENTS: A novel allostatic load questionnaire and the Family Appraisal of Caregiving Questionnaire for Palliative Care were used.

RESULTS

All caregivers (100% female) completed the study, with 9% of data missing. PC participants reported greater child health care appointments and admissions compared with WC and CMC.

CONCLUSIONS

Caregivers will disclose sensitive information for health care research, providing evidence for subsequent, adequately powered studies to inform policy-making. While underpowered for between-group analyses, results suggest pediatricians should routinely assess caregiver burden even at well-child visits.