Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study

Erin E. Kent, Michelle A. Mollica, J. Nicholas Dionne-Odom, Rebecca A. Ferrer, Roxanne E. Jensen, Katherine A. Ornstein, Ashley Wilder Smith

Research output: Contribution to journalArticlepeer-review

7 Scopus citations


Background and Objective A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers. Method We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (=2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level. Results Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3-63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level. Conclusions Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

Original languageEnglish
Pages (from-to)519-527
Number of pages9
JournalPalliative and Supportive Care
Issue number5
StatePublished - Oct 2020


  • Caregiving
  • Instrumental support
  • Patient-reported outcomes
  • Psychological distress


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