Self-Care for Caregivers of Individuals Living With Multiple Sclerosis: Testing Mediation Models of Caregiver Stress,Health,and Self-Care

Abstract

Individuals with Multiple Sclerosis (MS) often receive home health care, yet little research investigates the health of informal caregivers of individuals with MS. We tested a mediation model in which associations between caregiver stress and caregiver self-care were explained by each of four a priori caregiver health factors—caregiver negative affect, pain, tiredness, and functional limitations. Participants (n = 60 informal caregivers) were recruited online or in-person from March—July 2018, and completed an online survey assessing demographics and their caregiving experience. After controlling for demographics, only caregiver tiredness mediated the association between caregiver stress and caregiver self-care. Therefore, caregiver tiredness may be an important construct for assessment, intervention, and future research, among caregivers of individuals with MS, and among anyone providing home health care. These findings have research, clinical, and policy implications.

Keywords

caregiver multiple sclerosis self-care stress health home health care

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References

National Multiple Sclerosis Society. Multiple sclerosis: Just the facts. http://www.nationalmssociety.org/nationalmssociety/media/msnationalfiles/brochures/brochure-just-the-facts.pdf. Accessed March 22, 2017.

Buhse

Della Ratta

Galiczewski

Eckardt

Caregivers of older persons with multiple sclerosis: determinants of health-related quality of life. J Neurosci Nurs. 2015;47(2):E2-E12. doi:10.1097/JNN.0000000000000117.

McKeown

Porter-Armstrong

Baxter

GD.

Caregivers of people with multiple sclerosis: experiences of support. Mult Scler. 2004;10(2):219-230. doi:10.1191/1352458504ms1008oa

Katsavos

Artemiadis

Zacharis

, et al. Predicting caregiving status and caregivers’ burden in multiple sclerosis. A short report. Neurol Res. 2017;39(1):13-15. doi:10.1080/01616412.2016.1254942.

Vitaliano

Zhang

Scanlan

JM.

Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003;129(6):946-972. doi:10.1037/0033-2909.129.6.946.

Bjorgvinsdottir

Halldorsdottir

Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scand J Caring Sci. 2014;28(1):38-48. doi:10.1111/scs.12030.

Pinquart

Sörensen

Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250-267. doi:10.1037/0882-7974.18.2.250.

Lehan

Arango-Lasprilla

Macias

MÁ

Aguayo

Villaseñor

Distress associated with patients’ symptoms and depression in a sample of Mexican caregivers of individuals with MS. Rehabil Psychol. 2012;57(4):301-307. doi:10.1037/a0030764.

Thornton

Travis

SS.

Analysis of the reliability of the modified caregiver strain index. J Gerontol B Psychol Sci Soc Sci. 2003;58(2):S127-S132. doi:10.1093/geronb/58.2.s127.

10.

Wykle

Relationships between caregiver stress and self-care behaviors in response to symptoms. Clin Nurs Res. 2007;16(1):29-43.ndoi:10.1177/1054773806295238.

11.

Gaston-Johansson

Lachica

Fall-Dickson

Kennedy

MJ.

Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum. 2004;31(6):1161-1169. doi:10.1188/04.ONF.1161-1169.

12.

National Alliance for Caregiving & Evercare. Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare; 2006.

13.

Merrilees

Hubbard

Mastick

Miller

Dowling

GA.

Sleep in persons with frontotemporal dementia and their family caregivers. Nurs Res. 2014;63(2):129-136. doi:10.1097/NNR.0000000000000024.

14.

Buhse

Assessment of caregiver burden in families of persons with multiple sclerosis. J Neurosci Nurs. 2008;40(1):25-31. doi:10.1097/01376517-200802000-00005.

15.

Rabkin

Albert

Rowland

Mitsumoto

How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler. 2009;10(5-6):448-455. doi:10.1080/17482960802459889.

16.

Holland

Northrop

DE.

Young adults with multiple sclerosis: Management in the home. Home Health Care Manag Pract. 2006;18(3):186-195.

17.

Shapiro

Brown

Biegel

GM.

Teaching self-care to caregivers: effects of mindfulness-based stress reduction on the mental health of therapists in training. Train Educ Prof Psychol. 2007;1(2):105-115.

18.

Faul

Erdfelder

Lang

Buchner

AG.

G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods. 2007;39(2):175-191.

19.

Dhandapani

Gupta

Dhandapani

, et al. Study of factors determining caregiver burden among primary caregivers of patients with intracranial tumors. Surg Neurol Int. 2015;6:160. doi:10.4103/2152-7806.167084.

20.

Cella

Yount

Rothrock

, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007;45(5 suppl 1):S3-S11. doi:10.1097/01.mlr.0000258615.42478.55.

21.

Carlozzi

Kratz

Sander

, et al. Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model. Arch Phys Med Rehabil. 2015;96(1):105-113. doi:10.1016/j.apmr.2014.08.021.

22.

Cook-Cottone

Guyker

WM.

The development and validation of the mindful self-care scale: an assessment of practices that support positive embodiment. Mindfulness. 2017;9(1):161-175.

23.

Patrick

Singer

Boyd

Cranford

McCabe

SE.

Incentives for college student participation in web-based substance use surveys. Addict Behav. 2013;38(3):1710-1714. doi:10.1016/j.addbeh.2012.08.007.

24.

Hayes

AF.

Introduction to Mediation, Moderation, and Conditional Process Analysis: A Regression-Based Approach. New York: The Guilford Press; 2013.

25.

Hays

Bjorner

Revicki

Spritzer

Cella

Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res. 2009;18(7):873-880.

26.

Adelman

Tmanova

Delgado

Dion

Lachs

MS.

Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-1060. doi:10.1001/jama.2014.304.

27.

Sambasivam

Liu

Vaingankar

, et al. The hidden patient: chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults. Psychogeriatrics. 2019;19(1):65-72. doi:10.1111/psyg.12365.

28.

Byun

Lerdal

Gay

Lee

KA.

How adult caregiving impacts sleep: a systematic review. Curr Sleep Med Rep. 2016;2(4):191-205. doi:10.1007/s40675-016-0058-8.

29.

Ross

Yang

Klagholz

Wehrlen

Bevans

MF.

The relationship of health behaviors with sleep and fatigue in transplant caregivers. Psychooncology. 2016;25(5):506-512. doi:10.1002/pon.3860.

30.

Gao

Chapagain

Scullin

MK.

Sleep duration and sleep quality in caregivers of patients with dementia: a systematic review and meta-analysis. JAMA Netw Open. 2019;2(8):e199891. doi:10.1001/jamanetworkopen.2019.9891.

31.

American Association of Retired Persons. 2015 Report: Caregiving in the U.S. 2015:69-72. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf. Accessed August 13, 2020.