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.
BuhseMDella RattaCGaliczewskiJEckardtP.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.
3.
McKeownLPPorter-ArmstrongAPBaxterGD.Caregivers of people with multiple sclerosis: experiences of support. Mult Scler. 2004;10(2):219-230. doi:10.1191/1352458504ms1008oa
4.
KatsavosSArtemiadisAKZacharisM, 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.
5.
VitalianoPPZhangJScanlanJM.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.
6.
BjorgvinsdottirKHalldorsdottirS.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.
7.
PinquartMSörensenS.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.
8.
LehanTArango-LasprillaJCMaciasMÁAguayoAVillaseñorT.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.
9.
ThorntonMTravisSS.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.
LuYFWykleM.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-JohanssonFLachicaEMFall-DicksonJMKennedyMJ.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.
MerrileesJHubbardEMastickJMillerBLDowlingGA.Sleep in persons with frontotemporal dementia and their family caregivers. Nurs Res. 2014;63(2):129-136. doi:10.1097/NNR.0000000000000024.
14.
BuhseM.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.
RabkinJGAlbertSMRowlandLPMitsumotoH.How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler. 2009;10(5-6):448-455. doi:10.1080/17482960802459889.
16.
HollandNJNorthropDE.Young adults with multiple sclerosis: Management in the home. Home Health Care Manag Pract. 2006;18(3):186-195.
17.
ShapiroSLBrownKWBiegelGM.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.
FaulFErdfelderELangAGBuchnerAG.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.
DhandapaniMGuptaSDhandapaniS, 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.
CellaDYountSRothrockN, 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.
CarlozziNEKratzALSanderAM, 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-CottoneCPGuykerWM.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.
PatrickMESingerEBoydCJCranfordJAMcCabeSE.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.
HayesAF.Introduction to Mediation, Moderation, and Conditional Process Analysis: A Regression-Based Approach. New York: The Guilford Press; 2013.
25.
HaysRDBjornerJBRevickiDASpritzerKLCellaD.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.
AdelmanRDTmanovaLLDelgadoDDionSLachsMS.Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-1060. doi:10.1001/jama.2014.304.
27.
SambasivamRLiuJVaingankarJA, 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.
ByunELerdalAGayCLLeeKA.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.
RossAYangLKlagholzSDWehrlenLBevansMF.The relationship of health behaviors with sleep and fatigue in transplant caregivers. Psychooncology. 2016;25(5):506-512. doi:10.1002/pon.3860.
30.
GaoCChapagainNYScullinMK.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.
