Exploring the needs of the family caregiver of persons with spinal cord injury: An integrative review
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Abstract
Background & Aim: A spinal cord injury is a critical event that results in significant life changes for the injured person and the family and caregiver. This study aimed to identify and describe the primary needs of family members that are caregivers of patients with spinal cord injuries.
Methods & Materials: An integrative review study was conducted. The studies were collected from five databases, with no time limit until December 2021: MEDLINE® (Medical Literature Analysis and Retrieval System Online), CINAHL® (Cumulative Index to Nursing and Allied Health Literature), Psychology and Behavioural Sciences Collection, SCOPUS, SciELO (Scientific Electronic Library Online). The inclusion criteria for the accessed literature were: adults over 18 years of age who are caregivers of individuals with spinal cord injury; encompassing all the existing needs experienced by caregivers; including care recipients over 18 years old and who spinal cord injury patients are; and primary studies published without time limit. We performed a synthesis of the contents with an a priori categorization.
Results: The search resulted in 1018 bibliographic records. A total of 17 articles published between 1981 and 2020 that met the inclusion criteria were selected. The priority categorization process resulted from the study by Fernandes and Angelo in the following five thematic areas: the transition to care, being responsible for everything, the importance of support, access to formal support, communication, and information processes.
Conclusion: Family caregivers are important to support people with spinal cord injury, and they present numerous needs that should be the target of intervention by nurses at all stages of rehabilitation.
1.Rodriguez L, Rios M, Costa C, Hermoso M, Alonso N, Agea JL. Relatives of people with spinal cord injury: a qualitative study of caregivers’ metamorphosis. Spinal Cord. 2018; 56:548-59. https://doi.org/10.1038/s41393-018-0092-0
2.Alizadeh A, Dyck SM, Karimi-Abdolrezaee S. Traumatic Spinal Cord Injury: An Overview of Pathophysiology, Models and Acute Injury Mechanisms. Frontiers in Neurology. 2019;10:282. https://doi.org/10.3389/fneur.2019.00282
3.Conti A, Garrino L, Montanari P, Dimonte V. Informal caregivers’ needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disability & Rehabilitation.2016;38(2):159-67. https://doi.org/10.3109/09638288.2015.1031287
4.Ma H-P, Lu H, Xiong X, Yao J, Yang, Z. The investigation of care burden and coping style in caregivers of spinal cord injury patients, International Journal of Nursing Sciences. 2014., http://dx.doi.org/10.1016/j.ijnss.2014.05.010
5.Nogueira PC, Rabeh SA, Caliri MH, Haas VJ. Cuidadores de indivíduos com lesão medular: sobrecarga do cuidado (Caregivers of individuals with spinal cord injury: caregiver burden). Rev Esc Enferm USP. 2013;47(3):607-14. https://doi.org/10.1590/s0080-623420130000300012
6.Prudente COM, Ribeiro MFM, Porto CC. (Quality of life of family caregivers of adults with spinal cord injury: a systematic review). Ciencia & Saude Coletiva. 2017;22(1):123–34. https://doi.org/10.1590/1413-81232017221.08072015
7.Gemperli A, Rubinelli S, Zanini C, Huang J, Brach M, Barzallo DP. Living situation of family caregivers of persons with spinal cord injury. Journal of Rehabilitation Medicine. 2020 Nov 19;52(11):1-10. https://doi.org/10.2340/16501977-2762
8.Jeyathevan G, Cameron JI, Craven BC, Jaglal SB. Identifying required skills to enhance family caregiver competency in caring for individuals With spinal cord injury living in the community. Topics in Spinal Cord Injury Rehabilitation. 2019;25(4):290-302. https://doi.org/10.1310/sci2504-290
9. Fernandes CS, Angelo M. Family caregivers: what do they need? An integrative review. Revista da Escola de Enfermagem da USP. 2016;50(4):672–8. https://doi.org/10.1590/S0080-623420160000500019
10. Whittemore R, Knafl K. The integrative review: updated methodology. Journal of Advanced Nursing. 2005 Dec;52(5):546-53.
11. Aromataris E, Munn Z. Chapter 1: JBI Systematic Reviews. In: Aromataris E, Munn Z (Editors). JBI Manual for Evidence Synthesis. JBI, 2020. Available from https://synthesismanual.jbi.global. https://doi.org/10.46658/JBIMES-20-02
12. Remington R. A Step-by-Step Guide to Conducting an Integrative Review. A Step-by-Step Guide to Conducting an Integrative Review. 2020 Springer Nature.
13. Lawless J, Foster MJ. Searching Systematically and Comprehensively. In: Toronto C., Remington R. (eds) A Step-by-Step Guide to Conducting an Integrative Review. Springer, Cham. 2020. https://doi.org/10.1007/978-3-030-37504-1_3
14. Diviani N, Zanini C, Jaks R, Brach M, Gemperli A, Rubinelli S. Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland. Patient Education and Counseling. 2020;103(8):1531–7. https://doi.org/10.1016/j.pec.2020.02.024
15. Rodríguez L, Ríos M, Hermoso M, Alonso N, Costa C, Agea JL. mpact of simulation-based learning on family caregivers during the rehabilitation period of individuals with spinal cord injury. Spinal Cord. 2020;58(1):95–105. https://doi.org/10.1038/s41393-019-0343-8
16. Hall Pullin LD, McKenzie H. Spinal cord injury and long-term carers: Perceptions of formal and informal support. Journal of the Australasian Rehabilitation Nurses’ Association (JARNA). 2017;20(1):7–15.
17. Lucke KT, Martinez H, Mendez TB, Arévalo-Flechas LC. Resolving to Go Forward: The Experience of Latino/Hispanic Family Caregivers. Qualitative Health Research. 2013;23(2):218-30. https://doi.org/10.1177/1049732312468062
18. Arango-Lasprilla JC, Plaza SL, Drew A, Romero JL, Pizarro JA, Francis K, Kreutzer J. Family needs and psychosocial functioning of caregivers of individuals with spinal cord injury from Colombia, South America. Neuro Rehabilitation. 2010 Jan 1;27(1):83-93. https://doi.org/10.3233/NRE-2010-0583
19. Chen H-Y, Boore JRP. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing. 2009;18(2):174–82. https://doi.org/10.1111/j.1365-2702.2008.02355.x
20. Ellenbogen PS, Meade MA, Jackson MN, Barrett K. The impact of Spinal Cord Injury on the employment of family caregivers. Journal of Vocational Rehabilitation. 2006;25(1):35-44. https://worksupport.com/documents/meade_JVR2006%283%29.pdf
21. Boschen KA, Tonack M, Gargaro J. The impact of being a support provider to a person living in the community with a spinal cord injury. Rehabilitation Psychology. 2005;50(4):397–407. https://doi.org/10.1037/0090-5550.50.4.397
22. Post MWM, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord;43(5):311-9. https://doi.org/10.1038/sj.sc.3101704
23. Meade MA, Taylor A, Kreutzer JS, Marwitz JH, Thomas V. A preliminary study of acute family needs after spinal cord injury: analysis and implications. Rehabilitation Psychology; 49 (2):150–5. https://doi.org/10.1037/0090-5550.49.2.150
24. Weitzenkamp DA, Gerhart KA, Charlifue SW, Whiteneck GG, Savic G. Spouses of spinal cord injury survivors: the added impact of caregiving. Archives of Physical Medicine & Rehabilitation. 1997;78(8):822–7.
25. Stanton, Gail M. R.N., M.S. A Needs Assessment of Significant Others Following the Patient's Spinal Cord Injury, Journal of Neurosurgical Nursing: October 1984; 16: 5:253-256.
26. Hart G. Spinal cord injury: impact on clients’ significant others. Rehabilitation nursing : the official journal of the Association of Rehabilitation Nurses. 1981;6(1):11-5.
27. Meleis AH. Transitions theory: middle range and situation specific theories in nursing research and practice. New York: Springer; 2010
28. Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: A literature review. Spinal Cord. 2017;55(11):964–78. https://doi.org/10.1038/sc.2017.56
29. Costa Melo RM, dos Santos Rua M, de Brito Santos CSV. Family caregiver’s needs in caring for the dependent person: an integrative literature review. Revista de Enfermagem Referência. 2014;4(2):143–51. https://doi.org/10.12707/RIV14003
30. Fernandes CS, Margareth Â, Martins MM. Family caregivers of dependent elderly: same needs, different contexts-a focus group analysis. Geriatr Gerontol Aging. 2018;12:31-37. https://doi.org/10.5327/Z2447-211520181800008.
2.Alizadeh A, Dyck SM, Karimi-Abdolrezaee S. Traumatic Spinal Cord Injury: An Overview of Pathophysiology, Models and Acute Injury Mechanisms. Frontiers in Neurology. 2019;10:282. https://doi.org/10.3389/fneur.2019.00282
3.Conti A, Garrino L, Montanari P, Dimonte V. Informal caregivers’ needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disability & Rehabilitation.2016;38(2):159-67. https://doi.org/10.3109/09638288.2015.1031287
4.Ma H-P, Lu H, Xiong X, Yao J, Yang, Z. The investigation of care burden and coping style in caregivers of spinal cord injury patients, International Journal of Nursing Sciences. 2014., http://dx.doi.org/10.1016/j.ijnss.2014.05.010
5.Nogueira PC, Rabeh SA, Caliri MH, Haas VJ. Cuidadores de indivíduos com lesão medular: sobrecarga do cuidado (Caregivers of individuals with spinal cord injury: caregiver burden). Rev Esc Enferm USP. 2013;47(3):607-14. https://doi.org/10.1590/s0080-623420130000300012
6.Prudente COM, Ribeiro MFM, Porto CC. (Quality of life of family caregivers of adults with spinal cord injury: a systematic review). Ciencia & Saude Coletiva. 2017;22(1):123–34. https://doi.org/10.1590/1413-81232017221.08072015
7.Gemperli A, Rubinelli S, Zanini C, Huang J, Brach M, Barzallo DP. Living situation of family caregivers of persons with spinal cord injury. Journal of Rehabilitation Medicine. 2020 Nov 19;52(11):1-10. https://doi.org/10.2340/16501977-2762
8.Jeyathevan G, Cameron JI, Craven BC, Jaglal SB. Identifying required skills to enhance family caregiver competency in caring for individuals With spinal cord injury living in the community. Topics in Spinal Cord Injury Rehabilitation. 2019;25(4):290-302. https://doi.org/10.1310/sci2504-290
9. Fernandes CS, Angelo M. Family caregivers: what do they need? An integrative review. Revista da Escola de Enfermagem da USP. 2016;50(4):672–8. https://doi.org/10.1590/S0080-623420160000500019
10. Whittemore R, Knafl K. The integrative review: updated methodology. Journal of Advanced Nursing. 2005 Dec;52(5):546-53.
11. Aromataris E, Munn Z. Chapter 1: JBI Systematic Reviews. In: Aromataris E, Munn Z (Editors). JBI Manual for Evidence Synthesis. JBI, 2020. Available from https://synthesismanual.jbi.global. https://doi.org/10.46658/JBIMES-20-02
12. Remington R. A Step-by-Step Guide to Conducting an Integrative Review. A Step-by-Step Guide to Conducting an Integrative Review. 2020 Springer Nature.
13. Lawless J, Foster MJ. Searching Systematically and Comprehensively. In: Toronto C., Remington R. (eds) A Step-by-Step Guide to Conducting an Integrative Review. Springer, Cham. 2020. https://doi.org/10.1007/978-3-030-37504-1_3
14. Diviani N, Zanini C, Jaks R, Brach M, Gemperli A, Rubinelli S. Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland. Patient Education and Counseling. 2020;103(8):1531–7. https://doi.org/10.1016/j.pec.2020.02.024
15. Rodríguez L, Ríos M, Hermoso M, Alonso N, Costa C, Agea JL. mpact of simulation-based learning on family caregivers during the rehabilitation period of individuals with spinal cord injury. Spinal Cord. 2020;58(1):95–105. https://doi.org/10.1038/s41393-019-0343-8
16. Hall Pullin LD, McKenzie H. Spinal cord injury and long-term carers: Perceptions of formal and informal support. Journal of the Australasian Rehabilitation Nurses’ Association (JARNA). 2017;20(1):7–15.
17. Lucke KT, Martinez H, Mendez TB, Arévalo-Flechas LC. Resolving to Go Forward: The Experience of Latino/Hispanic Family Caregivers. Qualitative Health Research. 2013;23(2):218-30. https://doi.org/10.1177/1049732312468062
18. Arango-Lasprilla JC, Plaza SL, Drew A, Romero JL, Pizarro JA, Francis K, Kreutzer J. Family needs and psychosocial functioning of caregivers of individuals with spinal cord injury from Colombia, South America. Neuro Rehabilitation. 2010 Jan 1;27(1):83-93. https://doi.org/10.3233/NRE-2010-0583
19. Chen H-Y, Boore JRP. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing. 2009;18(2):174–82. https://doi.org/10.1111/j.1365-2702.2008.02355.x
20. Ellenbogen PS, Meade MA, Jackson MN, Barrett K. The impact of Spinal Cord Injury on the employment of family caregivers. Journal of Vocational Rehabilitation. 2006;25(1):35-44. https://worksupport.com/documents/meade_JVR2006%283%29.pdf
21. Boschen KA, Tonack M, Gargaro J. The impact of being a support provider to a person living in the community with a spinal cord injury. Rehabilitation Psychology. 2005;50(4):397–407. https://doi.org/10.1037/0090-5550.50.4.397
22. Post MWM, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord;43(5):311-9. https://doi.org/10.1038/sj.sc.3101704
23. Meade MA, Taylor A, Kreutzer JS, Marwitz JH, Thomas V. A preliminary study of acute family needs after spinal cord injury: analysis and implications. Rehabilitation Psychology; 49 (2):150–5. https://doi.org/10.1037/0090-5550.49.2.150
24. Weitzenkamp DA, Gerhart KA, Charlifue SW, Whiteneck GG, Savic G. Spouses of spinal cord injury survivors: the added impact of caregiving. Archives of Physical Medicine & Rehabilitation. 1997;78(8):822–7.
25. Stanton, Gail M. R.N., M.S. A Needs Assessment of Significant Others Following the Patient's Spinal Cord Injury, Journal of Neurosurgical Nursing: October 1984; 16: 5:253-256.
26. Hart G. Spinal cord injury: impact on clients’ significant others. Rehabilitation nursing : the official journal of the Association of Rehabilitation Nurses. 1981;6(1):11-5.
27. Meleis AH. Transitions theory: middle range and situation specific theories in nursing research and practice. New York: Springer; 2010
28. Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: A literature review. Spinal Cord. 2017;55(11):964–78. https://doi.org/10.1038/sc.2017.56
29. Costa Melo RM, dos Santos Rua M, de Brito Santos CSV. Family caregiver’s needs in caring for the dependent person: an integrative literature review. Revista de Enfermagem Referência. 2014;4(2):143–51. https://doi.org/10.12707/RIV14003
30. Fernandes CS, Margareth Â, Martins MM. Family caregivers of dependent elderly: same needs, different contexts-a focus group analysis. Geriatr Gerontol Aging. 2018;12:31-37. https://doi.org/10.5327/Z2447-211520181800008.
| Files | ||
| Issue | Vol 9 No 4 (2022): Autumn | |
| Section | Review Article(s) | |
| DOI | https://doi.org/10.18502/npt.v9i4.11200 | |
| Keywords | ||
| spinal cord injuries needs assessment caregivers family | ||
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How to Cite
1.
Fernandes C, Pessoa C, Nogueira P. Exploring the needs of the family caregiver of persons with spinal cord injury: An integrative review. NPT. 2022;9(4):279-292.
