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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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References

Adelman, RD, Tmanova, LL, Delgado, D, et al. (2014) Caregiver burden: A clinical review. JAMA 311(10), 1052–1060.CrossRefGoogle ScholarPubMed
Ahern Gould, K (2018) The CARE Act: Identifying and supporting family caregivers from hospitals to home. Dimensions of Critical Care Nursing 37(2), 59–61.Google Scholar
Applebaum, AJ and Breitbart, W (2013) Care for the cancer caregiver: A systematic review. Palliative Supportive Care 11(3), 231–252.CrossRefGoogle ScholarPubMed
Badr, H and Krebs, P (2013) A systematic review and meta-analysis of psychosocial interventions for couples coping with cancer. Psycho-Oncology 22(8), 1688–1704.CrossRefGoogle ScholarPubMed
Baker, JP and Berenbaum, H (2007) Emotional approach and problem-focused coping: A comparison of potentially adaptive strategies. Cognition and Emotion 21(1), 95–118.CrossRefGoogle Scholar
Beinart, N, Weinman, J, Wade, D, et al. (2012) Caregiver burden and psychoeducational interventions in Alzheimer's disease: A review. Dementia and Geriatric Cognitive Disorders Extra 2(1), 638–648.CrossRefGoogle ScholarPubMed
Berkman, LF (1984) Assessing the physical health effects of social networks and social support. Annual Review of Public Health 5, 413–432.CrossRefGoogle ScholarPubMed
Bevans, M and Sternberg, EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4), 398–403.CrossRefGoogle ScholarPubMed
Bom, J, Bakx, P, Schut, F, et al. (2018) The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. Gerontologist 59(5), e629–e642.Google Scholar
Chang, SS, Zhang, Y, Jevagurunathan, A, et al. (2016) Providing care to relatives with mental illness: Reactions and distress among primary informal caregivers. BMC Psychiatry 16, 1–9.CrossRefGoogle ScholarPubMed
Chi, NC and Demiris, G (2015) A systematic review of telehealth tools and interventions to support family caregivers. Journal of Telemedicine and Telecare 21(1), 37–44.CrossRefGoogle ScholarPubMed
Collins, NL and Feeney, BC (2000) A safe haven: An attachment theory perspective on support seeking and caregiving in intimate relationships. Journal of Personality and Social Psychology 78(6), 1053–1073.CrossRefGoogle ScholarPubMed
Davis, LL, Gilliss, CL, Deshefy-Longhi, T, et al. (2011) The nature and scope of stressful spousal caregiving relationships. Journal of Family Nursing 17(2), 224–240.CrossRefGoogle ScholarPubMed
Del-Pino-Casado, R, Frias-Osuna, A, Palomino-Moral, PA, et al. (2018) Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS ONE 13(1), e0189874.CrossRefGoogle ScholarPubMed
de Moor, JS, Dowling, EC, Ekwueme, DU, et al. (2016) Employment implications of informal cancer caregiving. Journal of Cancer Survivorship 11(1), 48–57.CrossRefGoogle ScholarPubMed
Denno, MS, Gillard, PJ, Graham, GD, et al. (2013) Anxiety and depression associated with caregiver burden in caregivers of stroke survivors with spasticity. Archives of Physical Medicine and Rehabilitation 94(9), 1731–1736.CrossRefGoogle ScholarPubMed
Dionne-Odom, JN, Demark-Wahnefried, W, Taylor, RA, et al. (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: Differences by varying levels of caregiver well-being and preparedness. Supportive Care in Cancer 25(8), 2437–2444.CrossRefGoogle ScholarPubMed
Dionne-Odom, JN, Applebaum, AJ, Ornstein, KA, et al. (2018) Participation and interest in support services among family caregivers of older adults with cancer. Psycho-Oncology 27(3), 969–976.CrossRefGoogle ScholarPubMed
Ellis, EM, Orom, H, Giovino, GA, et al. (2015) Relations between negative affect and health behaviors by race/ethnicity: Differential effects for symptoms of depression and anxiety. Health Psychology 34(9), 966–969.CrossRefGoogle Scholar
Evangelista, LS, Stromberg, A and Dionne-Odom, JN (2016) An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure. Current Opinion in Supportive and Palliative Care 10(1), 24–31.CrossRefGoogle ScholarPubMed
Feeney, BC (2004) A secure base: Responsive support of goal strivings and exploration in adult intimate relationships. Journal of Personality and Social Psychology 87(5), 631–648.CrossRefGoogle ScholarPubMed
Feeney, BC and Collins, NL (2015) A new look at social support: A theoretical perspective on thriving through relationships. Personality and Social Psychology Review 19(2), 113–147.CrossRefGoogle Scholar
Ferrell, B and Wittenberg, E (2017) A review of family caregiving intervention trials in oncology. CA: A Cancer Journal for Clinicians 67(4), 318–325.Google Scholar
Ferrell, BR, Twaddle, ML, Melnick, A, et al. (2018) National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition. Journal of Palliative Medicine 21(12), 1684–1690.CrossRefGoogle Scholar
Fletcher, BS, Miaskowski, C, Given, B, et al. (2012) The cancer family caregiving experience: An updated and expanded conceptual model. European Journal of Oncology Nursing 16(4), 387–398.CrossRefGoogle ScholarPubMed
Geng, HM, Chuang, DM, Yang, F, et al. (2018) Prevalence and determinants of depression in caregivers of cancer patients: A systematic review and meta-analysis. Medicine 97(39), e11863.CrossRefGoogle ScholarPubMed
Girme, YU, Overall, NC and Simpson, JA (2013) When visibility matters: Short-term versus long-term costs and benefits of visible and invisible support. Personality and Social Psychology Bulletin 39(11), 1441–1454.CrossRefGoogle ScholarPubMed
Gleason, ME, Iida, M, Shrout, PE, et al. (2008) Receiving support as a mixed blessing: Evidence for dual effects of support on psychological outcomes. Journal of Personality and Social Psychology 94(5), 824–838.CrossRefGoogle ScholarPubMed
Gonzales, E, Lee, Y and Brown, C (2017) Back to work? Not everyone. Examining the longitudinal relationships between informal caregiving and paid work after formal retirement. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 72(3), 532–539.Google Scholar
Hahn, EA, DeWalt, DA, Bode, RK, et al. (2014) New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychology 33(5), 490–499.CrossRefGoogle ScholarPubMed
Haun, MW, Sklenarova, H, Brechtel, A, et al. (2014) Distress in cancer patients and their caregivers and association with the caregivers’ perception of dyadic communication. Oncology Research and Treatment 37, 384–388.CrossRefGoogle ScholarPubMed
Hesse, BW, Greenberg, AJ, Peterson, EB, et al. (2017) The health information national trends survey (HINTS): A resource for consumer engagement and health communication research. Studies in Health Technology and Informatics 240, 330–346.Google ScholarPubMed
Ho, SC, Chan, A, Woo, J, et al. (2009) Impact of caregiving on health and quality of life: A comparative population-based study of caregivers for elderly persons and noncaregivers. Journals of Gerontology, Series A: Biological Sciences and Medical Sciences 64(8), 873–879.CrossRefGoogle ScholarPubMed
Hong, J, Aspey, L, Bao, G, et al. (2019) Chronic cutaneous lupus erythematosus: Depression burden and associated factors. American Journal of Clinical Dermatology 20(3), 465–475.CrossRefGoogle ScholarPubMed
House, JS, Umberson, D and Landis, KR (1988) Structures and processes of social support. Annual Review of Sociology 14(1), 293–318.CrossRefGoogle Scholar
Hughes, MT and Smith, TJ (2014) The growth of palliative care in the United States. Annual Review of Public Health 35, 459–475.CrossRefGoogle ScholarPubMed
Jarrott, SE, Zarit, SH, Stephens, MA, et al. (2005) Instrumental help and caregivers’ distress: Effects of change in informal and formal help. American Journal of Alzheimer's Disease & Other Dementias® 20(3), 181–190.CrossRefGoogle ScholarPubMed
Kent, EE and Dionne-Odom, JN (2019) Population-based profile of mental health and support service need among family caregivers of adults with cancer. Journal of Oncology Practice 15(2), e122–e131.CrossRefGoogle ScholarPubMed
Kim, Y, Baker, F, Spillers, RL, et al. (2006) Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 15(9), 795–804.CrossRefGoogle ScholarPubMed
Kroenke, K, Spitzer, RL, Williams, JB, et al. (2009) An ultra-brief screening scale for anxiety and depression: The PHQ-4. Psychosomatics 50(6), 613–621.Google ScholarPubMed
LaRocco, JM, House, JS and French, JR Jr. (1980) Social support, occupational stress, and health. Journal of Health and Social Behavior 21(3), 202–218.CrossRefGoogle ScholarPubMed
Li, QP, Mak, YW and Loke, AY (2013) Spouses’ experience of caregiving for cancer patients: A literature review. International Nursing Review 60(2), 178–187.CrossRefGoogle ScholarPubMed
Longacre, ML, Valdmanis, VG, Handorf, EA, et al. (2017) Work impact and emotional stress among informal caregivers for older adults. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 72(3), 522–531.Google ScholarPubMed
Miller, B, Townsend, A, Carpenter, E, et al. (2001) Social support and caregiver distress: A replication analysis. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 56(4), S249–256.CrossRefGoogle ScholarPubMed
Morelli, SA, Lee, IA, Arnn, ME, et al. (2015) Emotional and instrumental support provision interact to predict well-being. Emotion 15(4), 484–493.CrossRefGoogle ScholarPubMed
National Alliance for Caregiving (2015) Caregiving in the U.S. 2015 – Appendix B: Detailed Methodology. https://www.caregiving.org/wp-content/uploads/2015/05/CGV016-Main-Report-Appendix-B-Detailed-Methodology-5.21.15.pdf (Accessed 26 July 2019).Google Scholar
National Alliance for Caregiving and American Association for Retired Persons (2015) Caregiving in the U.S. https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf (Accessed 26 July 2019).Google Scholar
Nielsen, MK, Neergaard, MA, Jensen, AB, et al. (2016) Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: A nationwide population-based cohort study. Supportive Care in Cancer 24(7), 3057–3067.Google ScholarPubMed
Nishio, M, Kimura, H, Ogomori, K, et al. (2017) Emotional and instrumental support influencing male caregivers for people with dementia living at home. Journal of Rural Medicine 12(1), 20–27.CrossRefGoogle ScholarPubMed
Northwestern University (2019) Health measures, Vol. 2019. Northwestern University.Google Scholar
Nota, SP, Spit, SA, Oosterhoff, TC, et al. (2016) Is social support associated with upper extremity disability? Clinical Orthopaedics and Related Research 474(8), 1830–1836.CrossRefGoogle ScholarPubMed
Pearlin, LI, Mullan, JT, Semple, SJ, et al. (1990) Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 30(5), 583–594.CrossRefGoogle ScholarPubMed
Reblin, M, Donaldson, G, Ellington, L, et al. (2016) Spouse cancer caregivers’ burden and distress at entry to home hospice: The role of relationship quality. Journal of Social and Personal Relationships 33(5), 666–686.CrossRefGoogle ScholarPubMed
Reblin, M, Wu, YP, Pok, J, et al. (2017) Development of the electronic social network assessment program using the center for eHealth and wellbeing research roadmap. JMIR Human Factors 4(3), e23.CrossRefGoogle Scholar
Reeves, KW, Bacon, K and Fredman, L (2012) Caregiving associated with selected cancer risk behaviors and screening utilization among women: Cross-sectional results of the 2009 BRFSS. BMC Public Health 12, 685.CrossRefGoogle ScholarPubMed
Santini, ZI, Koyanagi, A, Tyrovolas, S, et al. (2015) The association between social relationships and depression: A systematic review. Journal of Affective Disorders 175, 53–65.CrossRefGoogle ScholarPubMed
Seeman, TE and Berkman, LF (1988) Structural characteristics of social networks and their relationship with social support in the elderly: Who provides support. Social Science and Medicine 26(7), 737–749.CrossRefGoogle ScholarPubMed
Son, J, Erno, A, Shea, DG, et al. (2007) The caregiver stress process and health outcomes. Journal of Aging and Health 19(6), 871–887.CrossRefGoogle ScholarPubMed
Uchino, BN (2009) Understanding the links between social support and physical health: A life-span perspective with emphasis on the separability of perceived and received support. Perspectives on Psychological Science 4(3), 236–255.CrossRefGoogle ScholarPubMed
Weaver, KE, Geiger, AM, Lu, L, et al. (2013) Rural-urban disparities in health status among US cancer survivors. Cancer 119(5), 1050–1057.CrossRefGoogle ScholarPubMed
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