Journal Logo

Article

Caregiver Burden and Associated Factors Among Informal Caregivers of Stroke Survivors

Achilike, Saviour; Beauchamp, Jennifer E. S.; Cron, Stanley G.; Okpala, Munachi; Payen, Samuel S.; Baldridge, Lyric; Okpala, Nnedinma; Montiel, Tahani Casameni; Varughese, Tina; Love, Mary; Fagundes, Christopher; Savitz, Sean; Sharrief, Anjail

Author Information
Journal of Neuroscience Nursing: December 2020 - Volume 52 - Issue 6 - p 277-283
doi: 10.1097/JNN.0000000000000552

Abstract

Each year, approximately 795 000 Americans experience a stroke event.1 In 2017, 7.8 million adults in the United States reported having survived a stroke.2 By 2030, 4% of the US adult population is projected to have had a stroke.3 Stroke survivorship remains a leading cause of chronic disability in the United States.1 As the number of stroke survivors increases, the need for caregiving expands. Most stroke survivors depend on unprepared informal caregivers for support upon hospital discharge.4 An informal caregiver is an unpaid individual (eg, spouse) who provides care for a person with a chronic condition or disability.5 The proportion of informal caregivers in the US adult population ranges from 12% to 29% depending on the period of data collection, definition of caregiver, and population sampled.6,7 Immediately after a loved one has a stroke, informal caregivers incur considerable demands.8 Consequently, becoming an informal caregiver to individuals with chronic disabilities (eg, stroke survivors) is considered a major life stressor negatively affecting the well-being of the caregiver and suggests that informal caregiving is an important public health issue.9

Informal caregivers of stroke survivors are at risk for care-related complications. Authors of a qualitative meta-synthesis of the effects of caregiving experiences on informal caregiver well-being reported an overall theme of caregiving for stroke survivors as a “full-time job,” with subthemes of restructured life, altered relationships, and physical and psychosocial challenges.10 In addition, findings from a meta-analysis included stroke survivors' activities of daily living, anxiety, depression, and neurological status that predicted informal caregivers' burden.11 Informal caregiver depression, anxiety, workload, female sex, African American race, and daughter-in-law relationship also predicted caregiver burden.

Although an increasing number of studies have examined factors associated with caregiver burden in informal caregivers, most have focused on patient populations other than stroke (eg, cancer or dementia).12,13 The American Heart Association and American Stroke Association strongly recommended that stroke survivors and informal caregivers actively participate in recovery interventions that focus on the well-being of both.14 Thus, studies aimed at characterizing informal caregivers at risk for increased caregiver burden are needed. Understanding factors potentially associated with caregiver burden in informal caregivers of stroke survivors offers opportunities for earlier detection and personalized interventions. Therefore, the purpose of this study was to investigate the degree of caregiver burden and associated factors among a cohort of informal caregivers of stroke survivors.

Methods

The study was an observational study of cross-sectional survey data. The sampling method was convenience sampling of informal caregivers accompanying stroke survivors to an outpatient stroke clinic in the Texas Medical Center within 2 years of ischemic or intracerebral hemorrhagic stroke. Individuals were included if they self-identified as an unpaid informal caregiver of a stroke survivor, the stroke survivor's ischemic or intracerebral hemorrhagic stroke occurred within the previous 2 years, and both the informal caregiver and stroke survivor were at least 21 years old and proficient in English. Informal caregivers of survivors of an acute transient ischemic attack were excluded. The study was approved by the university-affiliated institutional review board, and research procedures were followed in accordance with institutional guidelines. Because the only record linking the participant and the research would be the informed consent document and the principal risk would be potential harm resulting from a breach of confidentiality, the institutional review board waived the requirement for written informed consent. Each informal caregiver provided verbal consent and received a letter of information outlining the study. Informal caregivers were enrolled between October 2014 and November 2018. All data were deidentified.

Measures

Participants completed a demographic questionnaire, the Zarit Burden Interview (ZBI),15 the Patient Health Questionnaire (PHQ-9),16 and the Barthel Index (BI)17 during the clinic visit or afterward by completing online surveys within a secured, Web-based application (REDCap).18 All data were managed in REDCap.18 Informal caregiver and stroke survivor demographics were obtained from informal caregivers as self-reported data. Data collected included age, sex, race, the relationship between the informal caregiver and the stroke survivor, the caregiver's educational level, the caregiver's employment status, the time since the stroke incident, the stroke survivor's memory and/or thinking problems since the stroke, the caregiver's self-health rating, and the number of medications currently taken by the caregiver.

Caregiver burden was assessed using the ZBI,15 which is considered a reliable measure of caregiver burden with a Cronbach α of 0.9219 and is frequently reported in informal caregivers of patients with dementia20 and acquired brain injury.21 The ZBI comprises 22 items rated on a 5-point Likert scale from 0 (never) to 4 (nearly always), with the sum of the scores ranging from 0 to 88. Higher ZBI scores indicate more significant caregiver burden. We used ZBI total scores of 0 to 20 to indicate no to minimal burden, scores of 21 to 40 to indicate mild to moderate burden, and scores greater than 40 to indicate moderate to severe burden.

The presence of depressive symptoms was captured via the PHQ-9,16 a reliable and valid measure of depressive symptoms in stroke survivors with a Cronbach α of 0.7922 and which includes the 9 criteria for depressive disorder diagnosis from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.23 Using a 5-point Likert scoring system, each of the 9 items is scored 0 to 3, yielding a score of 0 to 27. Higher PHQ-9 scores indicate a greater number of depressive symptoms present. According to standard cutoff scores, a sum of 0 to 4 indicates the presence of no to minimal depressive symptoms, 5 to 9 indicates mild depressive symptoms, and 10 or greater indicates moderate to severe depressive symptoms.

Functional disability of the stroke survivor was measured using the BI.17 The BI is considered a reliable measure of functional disability for stroke survivors,24 with a Cronbach α of 0.96,25 and is one of the most commonly used measures to determine treatment effects in stroke trials.26 The BI comprises 10 items (eg, feeding, bathing, grooming) for which the informal caregiver assigns with varying weights (0, 5, 10, and 15 points) to establish degree of independence from any help. The BI is a cumulative score calculated by summing each item score. Higher scores represent higher degrees of independence, and lower scores indicate increased dependence or disability. Using the Modified Rankin Scale as a reference to categorize the BI, we used a BI total score of 100 to indicate no disability, scores of 95 to 99 to indicate mild disability, and scores of 94 or less to indicate moderate to severe disability.27

Data Analysis

Univariable analyses were initially conducted to test for variables that may be associated with caregiver burden category. The χ2 test was used for categorical variables, with the exact version used when any expected cell counts were less than 5. One-way analysis of variance was used for continuous variables. Variables with P values less than .10 in the univariable analyses were included in an ordinal logistic regression model. The caregiver's age was included in the model. The assumption of proportional odds was found to be violated by the model, so a partial proportional odds model was used that specifically designated nonproportional odds for the BI variable. All statistical analyses were conducted using IBM SPSS Statistics 26.0.

Results

Of the 96 enrolled participants, 88 were included in the analysis (Fig 1). Baseline characteristics of the informal caregivers and stroke survivors are provided in Table 1. The informal caregivers were, on average, younger (mean [SD], 54.3 [13.7] years) than the stroke survivors (63.9 [15.1] years). Among the informal caregivers, 69% were female compared with 53% of women among the stroke survivors. Most informal caregivers were caring for a spouse (44%) or child (23%), whereas 19% were caring for a parent. Most informal caregivers completed some college (58%), were employed (53%), reported average health (63%), and were taking 1 or fewer medications (48%). A total of 52% of informal caregivers were non-Hispanic White, followed by those who were non-Hispanic Black (26%) and those who were Hispanic or who self-identified as other races/ethnicities (22%). Most informal caregivers (63%) were caring for stroke survivors who had experienced a stroke within the preceding 6 months.

FIGURE 1
FIGURE 1:
Study Flow Diagram and Caregiver Burden Scores.
TABLE 1 - Characteristics of Participating Informal Caregivers and Related Stroke Survivors
Characteristics a Informal Caregivers b
(n = 88)
Stroke Survivor
(n = 88)
Age, mean ± SD, y 54.33 ± 13.65 63.86 ± 15.15
Sex
 Female 61 (69) 46 (53)
 Male 27 (31) 41 (47)
Race/ethnicity
 Non-Hispanic Black 23 (26) 24 (27)
 Non-Hispanic White 46 (52) 46 (52)
 Hispanic or other 19 (22) 18 (20)
Relationshipc
 Parent 20 (23)
 Son or daughter 17 (19)
 Spouse 39 (44)
 Sibling or other 12 (14)
Education
 Some high school 4 (5)
 Completed high school 33 (38)
 Completed college 40 (45)
 Completed graduate school 11 (13)
Current employment status
 Disability or retired 26 (30)
 Employed 47 (53)
 Unemployed 11 (13)
 Other 3 (3)
Time elapsed since stroke
 <6 months 55 (63)
 ≥6 months 33 (38)
Patient Health Questionnaire-9d
 1–4 52 (59)
 5–9 17 (19)
 ≥10 19 (22)
Barthel Indexe
 95–99 14 (16)
 ≤94 42 (48)
 No disability 32 (36)
Disabled before the stroke
 Yes 18 (20)
 No 70 (80)
Memory/thinking problems since stroke
 Yes 65 (74)
 No 22 (25)
Health rating
 Excellent 28 (32)
 Average 55 (63)
 Poor 5 (6)
Current no. medications
 1 or less 42 (48)
 2–3 20 (23)
 4–5 17 (19)
 >6 7 (8)
aAll characteristics as reported by the informal caregiver.
bValues are in n (%) unless otherwise indicated. Values or percentages may not add up to 100% because of missing data or rounding.
cRelationship with the stroke survivor for whom you are providing care.
dDepressive symptoms as measured by the Patient Health Questionnaire-9.
eFunctional disability as measured by the Barthel Index (BI).

Almost half of the informal caregivers (49%) reported no caregiver burden or minimal caregiver burden, 30 informal caregivers (34%) reported mild to moderate caregiver burden, and 15 informal caregivers (17%) reported moderate to severe caregiver burden. The presence of depressive symptoms in the informal caregiver was highly correlated with caregiver burden (χ2 = 41.341, P < .001). The univariable analysis resulted in 3 variables that met the a priori criterion (P < .10) for inclusion in the ordinal logistic regression model, along with the age of the informal caregiver. The 3 variables were informal caregiver sex (χ2 = 8.221, P = .017), stroke survivor memory or thinking problems since the stroke2 = 5.614, P = .059), and stroke survivor functional disability (χ2 = 12.682, P = .012; Table, Supplementary Digital Content 1, available at http://links.lww.com/JNN/A303). Stroke survivor functional disability was associated with informal caregiver burden (χ2 = 10.106, P = .0387), after adjusting for informal caregiver age and sex, and stroke survivor memory or thinking problems since the stroke. The odds of having mild to moderate caregiver burden were 3.7 times higher for informal caregivers of stroke survivors with moderate to severe functional disability (BI ≤ 94) when compared with informal caregivers of stroke survivors with no functional disability (BI = 100; Table, Supplementary Digital Content 2, available at http://links.lww.com/JNN/A304).

Discussion

We examined the degree of informal caregiver burden and associated factors (eg, stroke survivor functional disability) in a sample of informal caregivers of ischemic and intracerebral hemorrhagic stroke survivors within 2 years of the stroke incident. Similar to a recent qualitative meta-synthesis of 39 qualitative studies examining the experiences of informal caregivers of stroke survivors10 and a meta-analysis of 22 studies examining predictors of stroke caregiver burden,11 most of our informal caregivers were female and caring for a spouse. However, our sample was different from most studies of informal caregiver burden,10,11 in that 23% of our participants reported being a parent of an adult stroke survivor. Temporal trends in US hospitalizations for stroke from 2000 to 2010 indicate increased hospitalization rates for individuals 25 to 44 years old.28 Furthermore, stroke incidence in adults 18 to 54 years old has increased.29 Parental caregiving of an adult stroke survivor may differ because the caregiver may be older and dealing with his/her own health concerns.

Few known studies have examined the unique nature of a parent caring for an adult child who has had a stroke. One study in Taiwan included a significant proportion of parental caregivers of adult stroke survivors and found highly negative correlations between caregiver anxiety and depression with caregiver physical and mental health.30 Furthermore, caregiver physical health was associated with caregiver health issues, stroke type, anxiety, and depression, and mental health was associated with caregiver health issues, caregiver burden, anxiety, and depression. The Taiwan study is starkly different from other observational stroke studies (eg, CONOCES), where less than 5% of caregivers were parents.31 Most parental caregiving research has focused on caring for children 18 years or younger with chronic disabilities.32 For healthcare providers to best support the nation's aging population, future caregiving research should examine middle-age or aging parents as informal caregivers of adult stroke survivors.

The reasons behind gender and family structure differences in caregiving are speculative. Sociocultural factors and national age structures may contribute to these differences. Consistent with other observations, we found no association between caregiver burden and gender or relationship to the stroke survivor.33 However, other studies have found that female and spousal informal caregivers of stroke survivors experience greater difficulties (eg, depressive symptoms and task difficulties) compared with male informal caregivers of stroke survivors.34,35

Our frequency estimates for mild to moderate caregiver burden and moderate to severe caregiver burden were 34% and 17%, respectively. How caregiver burden is conceptualized (eg, psychosocial and physical effects) varies across different stroke studies and precludes a comparison of our frequency estimates for caregiver burden within the broader body of stroke caregiving literature. In general, informal caregivers experience more depressive symptoms than noncaregivers. Similar to our findings that depressive symptoms were highly correlated with caregiver burden, a recent meta-analysis of 55 studies, which included a total of 9847 caregivers across 20 countries, reported a positive association between caregiver burden and depressive symptoms.36 Therefore, factors predictive of caregiver burden likely also predict the presence of depressive symptoms. Although depression is known to be linked to caregiver burden,37 more should be done to intervene.

Moderate to severe functional disability of the stroke survivor was associated with mild to moderate informal caregiver burden. This finding reinforces previously documented associations between functional disability and caregiver burden.33,38 The functional status of stroke survivors may be used as a surrogate marker to identify informal caregivers at risk of increased caregiver burden.

Strengths and Limitations

The characteristics of the participants are a strength, in that they provide evidence regarding the caregiver burden of parental caregivers of adult stroke survivors. The major limitation related to the cross-sectional design of our study is the inability to conclude cause-and-effect relationships between variables such as caregiver burden, caregiver depressive symptoms, and stroke survivor levels of functional disability. Longitudinal data are needed to understand the temporal pattern of caregiver burden in stroke populations and how factors may influence caregiver burden differently at different times. The convenience sampling strategy may have resulted in selection bias, and sampling in a single stroke clinic limits the generalizability of the study findings. Cross-sectional studies may also result in nonresponse bias due to differences between participants and nonparticipants. The study focused on informal caregiving within 2 years post stroke; however, most participants were surveyed within 6 months of the stroke event, limiting the generalizability of the findings. The caregiver burden within the first 6 months post stroke may be inherently different than caregiver burden years after the stroke event.

Conclusion

Informal caregivers of stroke survivors experience considerable burden, which in turn increases the number of depressive symptoms. Importantly, the degree of burden incurred by the informal caregiver is related to the severity of the stroke survivor's functional disability. Characteristics of stroke survivors and informal caregivers of stroke survivors as reported in this study can inform the development of comprehensive approaches to stroke recovery, including the identification and reduction of caregiver burden. Symptoms of informal caregiver psychological distress (eg, depression) are easily measured and potentially modifiable risk factors. These findings support the need for the research community to move toward a stroke survivor/informal caregiver–centered approach to stroke recovery.

References

1. Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139:e56–e528. doi:10.1161/CIR.0000000000000659
2. NHIS. Summary health statistics. https://www.cdc.gov/nchs/nhis/shs.htm. Accessed July 15, 2020.
3. Ovbiagele B, Goldstein LB, Higashida RT, et al. Forecasting the future of stroke in the United States: a policy statement from the American Heart Association and American Stroke Association. Stroke. 2013;44(8):2361–2375. doi:10.1161/STR.0b013e31829734f2
4. Pindus DM, Mullis R, Lim L, et al. Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services—a systematic review and meta-ethnography. PLoS One. 2018;13(2):e0192533. doi:10.1371/journal.pone.0192533
5. Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309–319. doi:10.1093/geront/gnu177
6. Roth DL, Perkins M, Wadley VG, Temple EM, Haley WE. Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults. Qual Life Res. 2009;18(6):679–688. doi:10.1007/s11136-009-9482-2
7. Caregiving in the U.S. 2009. Executive Summary. https://assets.aarp.org/rgcenter/il/caregiving_09_es.pdf. Accessed March 20, 2020.
8. National Academies of Sciences E and Medicine. Families Caring for an Aging America. Washington, DC: The National Academies Press; 2016. doi:10.17226/23606.
9. Schulz R, Tompkins CA. Informal Caregivers in the United States: Prevalence, Caregiver Characteristics, and Ability to Provide Care. Washington, DC: National Research Council (US) Committee on the Role of Human Factors in Home Health Care; 2010.
10. Kokorelias KM, Lu FKT, Santos JR, Xu Y, Leung R, Cameron JI. “Caregiving is a full-time job” impacting stroke caregivers' health and well-being: a qualitative meta-synthesis. Health Soc Care Community. 2020;28(2):325–340. doi:10.1111/hsc.12895
11. Zhu W, Jiang Y. A meta-analytic study of predictors for informal caregiver burden in patients with stroke. J Stroke Cerebrovasc Dis. 2018;27(12):3636–3646. doi:10.1016/j.jstrokecerebrovasdis.2018.08.037
12. Longacre ML, Applebaum AJ, Buzaglo JS, et al. Reducing informal caregiver burden in cancer: evidence-based programs in practice. Transl Behav Med. 2018;8(2):145–155. doi:10.1093/tbm/ibx028
13. Uflacker A, Edmondson MC, Onyike CU, Appleby BS. Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer's disease. Int Psychogeriatr. 2016;28(2):269–273. doi:10.1017/S1041610215001647
14. Bakas T, McCarthy M, Miller ET. Update on the state of the evidence for stroke family caregiver and dyad interventions. Stroke. 2017;48(5):e122–e125. doi:10.1161/STROKEAHA.117.016052
15. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655. doi:10.1093/geront/20.6.649
16. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. doi:10.1046/j.1525-1497.2001.016009606.x
17. Mahoney FI, Barthel DW. Functional evaluation: the Barthel index. Md State Med J. 1965;14:61–65.
18. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap) – A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–381.
19. Al-Rawashdeh SY, Lennie TA, Chung ML. Psychometrics of the Zarit Burden Interview in caregivers of patients with heart failure. J Cardiovasc Nurs. 2016;31(6):E21–E28. doi:10.1097/JCN.0000000000000348
20. Hébert R, Bravo G, Préville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia*. Canadian J Aging. 2000;19(4):494–507. doi:10.1017/S0714980800012484
21. Siegert RJ, Jackson DM, Tennant A, Turner-Stokes L. Factor analysis and Rasch analysis of the Zarit Burden Interview for acquired brain injury carer research. J Rehabil Med. 2010;42(4):302–309. doi:10.2340/16501977-0511
22. de Man-van Ginkel JM, Gooskens F, Schepers VPM, Schuurmans MJ, Lindeman E, Hafsteinsdóttir TB. Screening for poststroke depression using the Patient Health Questionnaire. Nurs Res. 2012;61(5):333–341. doi:10.1097/NNR.0b013e31825d9e9e
23. Kroenke K, Spitzer RL. The PHQ-9: a new depression diagnostic and severity measure. Psychiatr Ann. 2002;32(9):509–515. doi:10.3928/0048-5713-20020901-06
24. D’Olhaberriague L, Litvan I, Mitsias P, Mansbach HH. A reappraisal of reliability and validity studies in stroke. Stroke. 1996;27(12):2331–2336. doi:10.1161/01.STR.27.12.2331
25. Brown EB, Tiejten GE, Deveshar RK, et al. Clinical stroke scales: an intra- and inter-scale evaluation. Neurology. 1990;40(S1):352.
26. Rahayu UB, Wibowo S, Setyopranoto I. The effectiveness of early mobilization time on balance and functional ability after ischemic stroke. Open Access Maced J Med Sci. 2019;7(7):1088–1092. doi:10.3889/oamjms.2019.269
27. Kwon S, Hartzema AG, Duncan PW, Min-Lai S. Disability measures in stroke. Stroke. 2004;35(4):918–923. doi:10.1161/01.STR.0000119385.56094.32
28. Ramirez L, Kim-Tenser MA, Sanossian N, et al. Trends in acute ischemic stroke hospitalizations in the United States. Journal of the American Heart Association. https://www.ahajournals.org/doi/10.1161/JAHA.116.003233. Accessed April 6, 2020.
29. George MG, Tong X, Bowman BA. Prevalence of cardiovascular risk factors and strokes in younger adults. JAMA Neurol. 2017;74(6):695–703. doi:10.1001/jamaneurol.2017.0020
30. Efi P, Fani K, Eleni T, et al. Quality of life and psychological distress of caregivers of stroke people. Acta Neurol Taiwan. 2017;26(4):154–166.
31. Oliva-Moreno J, Peña-Longobardo LM, Mar J, et al. Determinants of informal care, burden, and risk of burnout in caregivers of stroke survivors. Stroke. 2018;49(1):140–146. doi:10.1161/STROKEAHA.117.017575
32. National Research Council (US) Committee on the Role of Human Factors in Home Health Care. The Role of Human Factors in Home Health Care: Workshop Summary. Washington (DC): National Academies Press (US); 2010. http://www.ncbi.nlm.nih.gov/books/NBK210056/. Accessed November 21, 2019.
33. Em S, Bozkurt M, Caglayan M, et al. Psychological health of caregivers and association with functional status of stroke patients. Top Stroke Rehabil. 2017;24(5):323–329. doi:10.1080/10749357.2017.1280901
34. Jessup NM, Bakas T, McLennon SM, Weaver MT. Are there gender, racial or relationship differences in caregiver task difficulty, depressive symptoms and life changes among stroke family caregivers?Brain Inj. 2015;29(1):17–24. doi:10.3109/02699052.2014.947631
35. Ostwald SK, Bernal MP, Cron SG, Godwin KM. Stress experienced by stroke survivors and spousal caregivers during the first year after discharge from inpatient rehabilitation. Top Stroke Rehabil. 2009;16(2):93–104. doi:10.1310/tsr1602-93
36. Del-Pino-Casado R, Rodríguez Cardosa M, López-Martínez C, Orgeta V. The association between subjective caregiver burden and depressive symptoms in carers of older relatives: a systematic review and meta-analysis. PLoS One. 2019;14(5):e0217648. doi:10.1371/journal.pone.0217648
37. Hu P, Yang Q, Kong L, Hu L, Zeng L. Relationship between the anxiety/depression and care burden of the major caregiver of stroke patients. Medicine (Baltimore). 2018;97(40):e12638. doi:10.1097/MD.0000000000012638
38. Rigby H, Gubitz G, Eskes G, et al. Caring for stroke survivors: baseline and 1-year determinants of caregiver burden. Int J Stroke. 2009;4(3):152–158. doi:10.1111/j.1747-4949.2009.00287.x
Keywords:

caregiver; caregiver burden; family caregiver; spouse caregiver; stroke

Supplemental Digital Content

Copyright © 2020 American Association of Neuroscience Nurses