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

Published online by Cambridge University Press:  24 February 2020

Erin E. Kent Open the ORCID record for Erin E. Kent [Opens in a new window] ,
Michelle A. Mollica ,
J. Nicholas Dionne-Odom Open the ORCID record for J. Nicholas Dionne-Odom [Opens in a new window] ,
Rebecca A. Ferrer ,
Roxanne E. Jensen ,
Katherine A. Ornstein  and
Ashley Wilder Smith
Erin E. Kent*
Affiliation:
Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, NC Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD ICF, Fairfax, VA
Michelle A. Mollica
Affiliation:
Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD
J. Nicholas Dionne-Odom
Affiliation:
School of Nursing, University of Alabama at Birmingham, Birmingham, AL
Rebecca A. Ferrer
Affiliation:
Biobehavioral and Psychological Sciences Research Branch, Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD
Roxanne E. Jensen
Affiliation:
Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD
Katherine A. Ornstein
Affiliation:
Icahn School of Medicine at Mount Sinai, New York, NY
Ashley Wilder Smith
Affiliation:
Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD
*
Author for correspondence: Erin Kent, Department of Health Policy and Management, 1102-B McGavran-Greenberg Hall, CB # 7411, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC27599-7411. E-mail: erin.kent@unc.edu
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Abstract

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.

Keywords

CaregivingInstrumental supportPatient-reported outcomesPsychological distress
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 5 , October 2020 , pp. 519 - 527
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Copyright
Copyright © Cambridge University Press 2020

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