Abstract
Background
Caregivers of individuals with spinal cord injury encounter high levels of physical, psychosocial, and financial burden by providing lifelong assistance. In the present study, we aimed to assess the overall burden score of caregivers in spinal cord injury by pooling different standard scores together as a review.
Method
Search on databases of PubMed/Medline, Web of Science and Scopus was conducted using PRISMA guidelines. Studies that assessed the burden of care using the caregiver burden inventories of CBI (caregiver burden inventory), CBS (caregiver burden scale), CG (caregiver), CSI (Caregiver Strain Index), and short- and long-form Zarit questionnaires were included in our study. The results were analyzed using the meta-analysis method and a random effect pooled estimator. All analyses were performed using STATA SE software version 14.
Result
A total of 23 articles out of 399 retrieved studies were added to this review study. The overall score of caregiver burden in individuals with SCI was calculated 48.68 (95% CI 42.574–54.788). The I2 heterogeneity was 11.7%, suggesting a low level of heterogeneity among the included studies. There was no systematic difference between various questionnaires added to meta-analysis (P = 0.526). In addition, the caregiver burden did not differ in less and highly developed countries (P = 0.405).
Conclusion
Since SCI places a considerable burden on caregivers, scoring the burden of care can help policymakers plan for essential interventions and allocate more facilities for these patients and their caregivers.
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Availability of data and materials
Data will be available for each researcher who request by Email.
Code availability
Not applicable.
Abbreviations
- WoS:
-
Web of sciences
- TSCI:
-
Traumatic spinal cord injury
- SCI:
-
Spinal cord injury
- CBI:
-
Caregiver burden inventory
- CBS:
-
Caregiver Burden Scale
- CG:
-
Caregiver
- CSI:
-
Caregiver strain index
- Q-SSPL:
-
Quality of surveys in psychological studies
References
Adhikari SP, Gurung G, Khadka B, Rana C (2020) Factors influencing depression in individuals with traumatic spinal cord injury and caregivers’ perceived burden in a low-income country: a cross-sectional study. Spinal Cord 58(10):1112–1118. https://doi.org/10.1038/s41393-020-0451-5
Ahuja CS, Wilson JR, Nori S, Kotter MRN, Druschel C, Curt A, Fehlings MG (2017) Traumatic spinal cord injury. Nat Rev Dis Primers 3(1):17018. https://doi.org/10.1038/nrdp.2017.18
Alizadeh A, Dyck SM, Karimi-Abdolrezaee S (2019) Traumatic spinal cord injury: an overview of pathophysiology, models and acute injury mechanisms. Front Neurol 10:282. https://doi.org/10.3389/fneur.2019.00282
Amanat M, Vaccaro AR, Salehi M, Rahimi-Movaghar V (2019) Neurological conditions associated with spinal cord injury. Inf Med Unlocked 16:100245. https://doi.org/10.1016/j.imu.2019.100245
Ariza-Vega P, Ortiz-Piña M, Kristensen MT, Castellote-Caballero Y, Jiménez-Moleón JJ (2019) High perceived caregiver burden for relatives of patients following hip fracture surgery. Disabil Rehabil 41(3):311–318. https://doi.org/10.1080/09638288.2017.1390612
Beentjes TAA, Goossens PJJ, Poslawsky IE (2012) Caregiver burden in bipolar hypomania and mania: a systematic review. Perspect Psychiatr Care 48(4):187–197. https://doi.org/10.1111/j.1744-6163.2012.00328.x
Blanes L, Carmagnani MIS, Ferreira LM (2007) Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord 45(6):399–403. https://doi.org/10.1038/sj.sc.3102038
Castellano-Tejedor C, Lusilla-Palacios P (2017) A study of burden of care and its correlates among family members supporting relatives and loved ones with traumatic spinal cord injuries. Clin Rehabil 31(7):948–956. https://doi.org/10.1177/0269215517709330
Chen J, Chen Z, Zhang K, Song D, Wang C, Xuan T (2021) Epidemiological features of traumatic spinal cord injury in Guangdong Province, China. J Spinal Cord Med 44(2):276–281. https://doi.org/10.1080/10790268.2019.1654190
Connors MH, Seeher K, Teixeira-Pinto A, Woodward M, Ames D, Brodaty H (2020) Dementia and caregiver burden: a three-year longitudinal study. Int J Geriatr Psychiatry 35(2):250–258. https://doi.org/10.1002/gps.5244
Conti A, Clari M, Garrino L, Maitan P, Scivoletto G, Cavallaro L, Frigerio S et al (2019) Adaptation and validation of the Caregiver Burden Inventory in Spinal Cord Injuries (CBI-SCI). Spinal Cord 57(1):75–82. https://doi.org/10.1038/s41393-018-0179-7
Conti A, Clari M, Nolan M, Wallace E, Tommasini M, Mozzone S, Campagna S (2019) The relationship between psychological and physical secondary conditions and family caregiver burden in spinal cord injury: a correlational study. Top Spinal Cord Injury Rehabil 25(4):271–280. https://doi.org/10.1310/sci2504-271
Doyle ST, Perrin PB, Nicholls E, Olivera SL, Quintero LM, Otálvaro NY, Arango-Lasprilla JC (2016) Pediatric SCI/D caregiver mental health and family dynamics in Colombia, South America. Disabil Rehabil 38(9):819–827. https://doi.org/10.3109/09638288.2015.1046568
Durante A, Greco A, Annoni AM, Steca P, Alvaro R, Vellone E (2019) Determinants of caregiver burden in heart failure: does caregiver contribution to heart failure patient self-care increase caregiver burden? Eur J Cardiovasc Nurs 18(8):691–699
Farajzadeh A, Akbarfahimi M, Maroufizadeh S, Miri Lavasani N (2021) Factors associated with quality of life among caregivers of people with spinal cord injury. Occup Ther Int 2021:9921710. https://doi.org/10.1155/2021/9921710
Farajzadeh A, Akbarfahimi M, Maroufizadeh S, Rostami HR, Kohan AH (2018) Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury. Disabil Rehabil 40(3):367–372. https://doi.org/10.1080/09638288.2016.1258738
Gajraj-Singh P (2011) Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord 49(8):928–934. https://doi.org/10.1038/sc.2011.15
Graça Á, Nascimento MA, Lavado EL, Garanhani MR (2013) Quality of life of primary caregivers of spinal cord injury survivors. Rev Bras Enferm 66(1):79–84. https://doi.org/10.1590/s0034-71672013000100012
Grimmer K, Moss J, Falco J (2004) Becoming a carer for an elderly person after discharge from an acute hospital admission. Internet J Allied Health Sci Pract 2(4):4
Hatefi M, Vaisi-Raygani A, Borji M, Tarjoman A (2020) Investigating the relationship between religious beliefs with care burden, stress, anxiety, and depression in caregivers of patients with spinal cord injuries. J Relig Health 59(4):1754–1765. https://doi.org/10.1007/s10943-019-00853-3
Jafari H, Ebrahimi A, Aghaei A, Khatony A (2018) The relationship between care burden and quality of life in caregivers of hemodialysis patients. BMC Nephrol 19(1):321–321. https://doi.org/10.1186/s12882-018-1120-1
Jeong YG, Myong JP, Koo JW (2015) The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients. Disabil Health J 8(4):619–625. https://doi.org/10.1016/j.dhjo.2015.05.005
Khazaeipour Z, Rezaei-Motlagh F, Ahmadipour E, Azarnia-Ghavam M, Mirzababaei A, Salimi N, Salehi-Nejad A (2017) Burden of care in primary caregivers of individuals with spinal cord injury in Iran: Its association with sociodemographic factors. Spinal Cord 55(6):595–600. https://doi.org/10.1038/sc.2016.195
Kudo D, Miyakoshi N, Hongo M, Kasukawa Y, Ishikawa Y, Ishikawa N, Shimada Y (2019) An epidemiological study of traumatic spinal cord injuries in the fastest aging area in Japan. Spinal Cord 57(6):509–515. https://doi.org/10.1038/s41393-019-0255-7
Kumar R, Lim J, Mekary RA, Rattani A, Dewan MC, Sharif SY, Park KB et al (2018) Traumatic spinal injury: global epidemiology and worldwide volume. World Neurosurg 113:e345–e363. https://doi.org/10.1016/j.wneu.2018.02.033
Lau JH, Abdin E, Jeyagurunathan A, Seow E, Ng LL, Vaingankar JA, Subramaniam M et al (2021) The association between caregiver burden, distress, psychiatric morbidity and healthcare utilization among persons with dementia in Singapore. BMC Geriatr 21(1):67–67. https://doi.org/10.1186/s12877-021-02014-2
Lee BB, Cripps RA, Fitzharris M, Wing PC (2014) The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord 52(2):110–116. https://doi.org/10.1038/sc.2012.158
Access Economics Pty Limited (2009) The economic cost of spinal cord injury and traumatic brain injury in Australia: Victorian Neurotrauma Initiative 1:1–116
Liu Z, Heffernan C, Tan J (2020) Caregiver burden: a concept analysis. Int J Nurs Sci 7(4):438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Ma HP, Lu HJ, Xiong XY, Yao JY, Yang Z (2014) The investigation of care burden and coping style in caregivers of spinal cord injury patients. Int J Nurs Sci 1(2):185–190. https://doi.org/10.1016/j.ijnss.2014.05.010
Madara Marasinghe K (2016) Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review. Disabil Rehabil Assist Technol 11(5):353–360. https://doi.org/10.3109/17483107.2015.1087061
Maitan P, Frigerio S, Conti A, Clari M, Vellone E, Alvaro R (2018) The effect of the burden of caregiving for people with spinal cord injury (SCI): a cross-sectional study. Ann dell’Istituto Super Sanita 54(3):185–193. https://doi.org/10.4415/ANN180304
Maitan P, Frigerio S, Conti A, Clari M, Vellone E, Alvaro R (2018) The effect of the burden of caregiving for people with spinal cord injury (SCI): a cross-sectional study. Ann Ist Super Sanita 54(3):185–193. https://doi.org/10.4415/ann_18_03_04
McDaid D, Park AL, Gall A, Purcell M, Bacon M (2019) Understanding and modelling the economic impact of spinal cord injuries in the United Kingdom. Spinal Cord 57(9):778–788. https://doi.org/10.1038/s41393-019-0285-1
Middleton JW, Simpson GK, De Wolf A, Quirk R, Descallar J, Cameron ID (2014) Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. Arch Phys Med Rehabil 95(7):1312–1319. https://doi.org/10.1016/j.apmr.2014.03.017
Mohammadi S, Roshanzadeh M (2016) The effect of educational intervention based on orem self-care model on family caregiver’s burden of patients with spinal cord injuries. Arch Rehabil 17(1):54–63. https://doi.org/10.20286/jrehab-170152
Bickenbach J, Officer A, Shakespeare T, von Groote P (2013) International perspectives on spinal cord injury: World Health Organization, The International Spinal Cord Society, 1:147–160
Parmar J, Anderson S, Abbasi M, Ahmadinejad S, Brémault-Phillips S, Chan K, Tian PGJ et al (2020) Support for family caregivers: a scoping review of family physician’s perspectives on their role in supporting family caregivers. Health Soc Care Commun 28(3):716–733. https://doi.org/10.1111/hsc.12928
Parry JA, Langford JR, Koval KJ (2019) Caregivers of hip fracture patients: the forgotten victims? Injury 50(12):2259–2262. https://doi.org/10.1016/j.injury.2019.09.030
Pilusa S, Myezwa H, Potterton J (2019) Prevention care for secondary health conditions among people living with spinal cord injuries: research protocol. BMC Res Notes 12(1):179. https://doi.org/10.1186/s13104-019-4202-7
Protogerou C, Hagger MS (2020) A checklist to assess the quality of survey studies in psychology. Methods Psychol 3:100031. https://doi.org/10.1016/j.metip.2020.100031
Rattanasuk D, Nantachaipan P, Sucamvang K, Moongtui W (2013) A causal model of well-being among caregivers of people with spinal cord injury. Pacific Rim Int J Nurs Res 17(4):342–355
Rezaei H, Niksima SH, Ghanei Gheshlagh R (2020) Burden of Care in Caregivers of Iranian patients with chronic disorders: a systematic review and meta-analysis. Health Qual Life Outcomes 18(1):261. https://doi.org/10.1186/s12955-020-01503-z
Rodakowski J, Skidmore ER, Rogers JC, Schulz R (2012) Role of social support in predicting caregiver burden. Arch Phys Med Rehabil 93(12):2229–2236. https://doi.org/10.1016/j.apmr.2012.07.004
Scholten EWM, Kieftenbelt A, Hillebregt CF, De Groot S, Ketelaar M, Visser-Meily JMA, Post MWM (2018) Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation. Spinal Cord 56(5):436–446. https://doi.org/10.1038/s41393-017-0047-x
Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215–2219. https://doi.org/10.1001/jama.282.23.2215
Schulz R, Czaja SJ, Lustig A, Zdaniuk B, Martire LM, Perdomo D (2009) Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabil Psychol 54(1):1–15. https://doi.org/10.1037/a0014932
Shepherd-Banigan ME, Shapiro A, McDuffie JR, Brancu M, Sperber NR, Van Houtven CH, Williams JW Jr et al (2018) Interventions that support or involve caregivers or families of patients with traumatic injury: a systematic review. J Gen Intern Med 33(7):1177–1186. https://doi.org/10.1007/s11606-018-4417-7
Shiba K, Kondo N, Kondo K (2016) Informal and formal social support and caregiver burden: the AGES caregiver survey. J Epidemiol 26(12):622–628. https://doi.org/10.2188/jea.JE20150263
Simpson G, Jones K (2013) How important is resilience among family members supporting relatives with traumatic brain injury or spinal cord injury? Clin Rehabil 27(4):367–377. https://doi.org/10.1177/0269215512457961
Simpson GK, Anderson MI, Jones KF, Genders M, Gopinath B (2020) Do spirituality, resilience and hope mediate outcomes among family caregivers after traumatic brain injury or spinal cord injury? A structural equation modelling approach. NeuroRehabilitation 46(1):3–15. https://doi.org/10.3233/nre-192945
Smith EM, Boucher N, Miller WC (2016) Caregiving services in spinal cord injury: a systematic review of the literature. Spinal Cord 54(8):562–569. https://doi.org/10.1038/sc.2016.8
Thelakkadan A, Chacko LK (2021) Caregiver burden of primary caregivers for people with spinal cord injury (SCI) residing at Calicut District Kerala. J Evol Med Dent Sci 10(8):458–462. https://doi.org/10.14260/jemds/2021/101
Tough H, Brinkhof MW, Siegrist J, Fekete C (2017) Subjective caregiver burden and caregiver satisfaction: the role of partner relationship quality and reciprocity. Arch Phys Med Rehabil 98(10):2042–2051. https://doi.org/10.1016/j.apmr.2017.02.009
Tough H, Brinkhof MWG, Fekete C (2020) Is informal caregiving at odds with optimal health behaviour? A cross-sectional analysis in the caregiving partners of persons with spinal cord injury. Health Psychol Behav Med 8(1):526–542. https://doi.org/10.1080/21642850.2020.1838282
Tramonti F, Bonfiglio L, Bongioanni P, Belviso C, Fanciullacci C, Rossi B, Carboncini MC et al (2019) Caregiver burden and family functioning in different neurological diseases. Psychol Health Med 24(1):27–34. https://doi.org/10.1080/13548506.2018.1510131
Xiao P, Zhou Y (2020) Factors associated with the burden of family caregivers of elderly patients with femoral neck fracture: a cross-sectional study. J Orthop Surg Res 15(1):234. https://doi.org/10.1186/s13018-020-01749-9
Acknowledgements
Authors thanks to other contributors of the systematic review who did not add as an author. This study was confirmed ethically in deputy of research, Guilan University of Medical Sciences.
Funding
The study was supported by Guilan Road Trauma Research Center, Guilan University of Medical Sciences.
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EHR proposed the systematic review, analyzed the results, wrote the manuscript and screened the articles, FK screened the articles, revised the manuscript, wrote discussion, SY screened the article, LK screened the article, wrote the manuscript.
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This study was approved ethically in Guilan University of Medical Sciences ethics committee (Ethics code IR.GUMS.REC.1399.570).
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Appendix 1
Appendix 1
An Example of search strategy (Web of Science).
((TI = (burden*) OR AB = (burden*) OR TI = (pressur*) OR AB = (pressur*) OR TI = (burden*) OR AB = (burden*)) AND (TI = (caregiver*) OR AB = (caregiver*))) AND LANGUAGE: (English) AND DOCUMENT TYPES: (Article) AND ((AB = "spinal cord injur*") OR TI = ("spinal cord injur*") OR (AB = "spinal cord lesion*") OR TI = ("Injur* of spine") OR (AB = "Injur* of spine") OR TI = ("spinal column injur*") OR (AB = "spinal column injur*") OR TI = ("vertebral column injur*") OR (AB = "vertebral column injur*")) AND LANGUAGE: (English) AND DOCUMENT TYPES: (Article).
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Keihanian, F., Kouchakinejad-Eramsadati, L., Yousefzadeh-Chabok, S. et al. Burden in caregivers of spinal cord injury patients: a systematic review and meta-analysis. Acta Neurol Belg 122, 587–596 (2022). https://doi.org/10.1007/s13760-022-01888-2
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DOI: https://doi.org/10.1007/s13760-022-01888-2