Technology-based support for stroke caregiving: A rapid review of evidence
Corresponding Author
Elton H. Lobo M.Eng
PhD Candidate
School of Information Technology, Deakin University, Geelong, Victoria, Australia
Department of Public Health, University of Copenhagen, Copenhagen, Denmark
Correspondence
Elton H. Lobo, M.Eng, PhD Candidate, School of Information Technology, Faculty of Science, Engineering and Built Environment, Deakin University, Geelong, VIC 3216, Australia.
Email: [email protected]
Search for more papers by this authorMohamed Abdelrazek PhD
Associate Professor
School of Information Technology, Deakin University, Geelong, Victoria, Australia
Search for more papers by this authorFinn Kensing PhD
Professor
Department of Computer Science, University of Copenhagen, Copenhagen, Denmark
Search for more papers by this authorLene J. Rasmussen PhD
Professor
Department of Cellular and Molecular Medicine, University of Copenhagen, Copenhagen, Denmark
Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark
Search for more papers by this authorPatricia M. Livingston PhD
Professor
Faculty of Health, Deakin University, Geelong, Victoria, Australia
Search for more papers by this authorJohn Grundy PhD
Professor
Faculty of Information Technology, Monash University, Victoria, Australia
Search for more papers by this authorSheikh Mohammed Shariful Islam PhD
Physician Scientist
Institute for Physical Activity and Nutrition (IPAN), Deakin University, Geelong, Australia
Search for more papers by this authorAnne Frølich PhD
Clinical Professor
Department of Public Health, University of Copenhagen, Copenhagen, Denmark
Innovation and Research Centre for Multimorbidity, Slagelse Hospital, Region Zealand, Denmark
Search for more papers by this authorCorresponding Author
Elton H. Lobo M.Eng
PhD Candidate
School of Information Technology, Deakin University, Geelong, Victoria, Australia
Department of Public Health, University of Copenhagen, Copenhagen, Denmark
Correspondence
Elton H. Lobo, M.Eng, PhD Candidate, School of Information Technology, Faculty of Science, Engineering and Built Environment, Deakin University, Geelong, VIC 3216, Australia.
Email: [email protected]
Search for more papers by this authorMohamed Abdelrazek PhD
Associate Professor
School of Information Technology, Deakin University, Geelong, Victoria, Australia
Search for more papers by this authorFinn Kensing PhD
Professor
Department of Computer Science, University of Copenhagen, Copenhagen, Denmark
Search for more papers by this authorLene J. Rasmussen PhD
Professor
Department of Cellular and Molecular Medicine, University of Copenhagen, Copenhagen, Denmark
Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark
Search for more papers by this authorPatricia M. Livingston PhD
Professor
Faculty of Health, Deakin University, Geelong, Victoria, Australia
Search for more papers by this authorJohn Grundy PhD
Professor
Faculty of Information Technology, Monash University, Victoria, Australia
Search for more papers by this authorSheikh Mohammed Shariful Islam PhD
Physician Scientist
Institute for Physical Activity and Nutrition (IPAN), Deakin University, Geelong, Australia
Search for more papers by this authorAnne Frølich PhD
Clinical Professor
Department of Public Health, University of Copenhagen, Copenhagen, Denmark
Innovation and Research Centre for Multimorbidity, Slagelse Hospital, Region Zealand, Denmark
Search for more papers by this authorFunding information: University of Copenhagen; Deakin University
Abstract
Aim
This rapid review examines the technology-based interventions for caregivers of stroke proposed in the literature while also identifying the acceptance, effectiveness and satisfaction of the implemented approaches.
Background
The increasing burden of supporting stroke survivors has resulted in caregivers searching for innovative solutions, such as technology-based interventions, to provide better care. Hence, its potential to support caregivers throughout the disease trajectory needs to be assessed.
Evaluation
Five electronic databases were systematically searched for articles related to stroke caregiving technologies based on well-defined inclusion and exclusion criteria.
Key issue(s)
Fifteen articles met the inclusion criteria that focused on supporting caregivers through functionalities such as education, therapy and support, remote consultations, health assessments and logs and reminders using different devices. The majority of interventions demonstrated positive conclusions for caregiving impact, acceptance, effectiveness and satisfaction.
Conclusion
Findings highlight the influences of technology in improving stroke caregiving and the need to include user-centred design principles to create a meaningful, actionable and feasible system for caregivers.
Implications for nursing management
Technology can educate and support stroke caregivers, thereby minimizing uncertainty and ensuring better care for the survivor.
CONFLICT OF INTERESTS
The authors declare that they have no conflict of interests.
Open Research
DATA AVAILABILITY STATEMENT
Author elects to not share data.
Supporting Information
Filename | Description |
---|---|
jonm13439-sup-0001-supplementary_material_A.docxWord 2007 document , 18.6 KB | Data S1. Supporting Information |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
REFERENCES
- Al-Janabi, H., Frew, E., Brouwer, W., Rappange, D., & Van Exel, J. (2010). The inclusion of positive aspects of caring in the Caregiver Strain Index: tests of feasibility and validity. International Journal of Nursing Studies, 47(8), 984–993.
- Aldehaim, A. Y., Alotaibi, F. F., Uphold, C. R., & Dang, S. (2016). The impact of technology-based interventions on informal caregivers of stroke survivors: A systematic review. Telemedicine Journal and E-Health, 22(3), 223–231. https://doi.org/10.1089/tmj.2015.0062
- Andersen, T. O., Bansler, J. P., Kensing, F., Moll, J., Mønsted, T., Nielsen, K. D., Nielsen, O. W., Petersen, H. H., & Svendsen, J. H. (2018). Aligning concerns in Telecare: Three concepts to guide the design of patient-centred E-Health. Computer Supported Cooperative Work (CSCW), 27(3-6), 1181–1214. https://doi.org/10.1007/s10606-018-9309-1
- Andersson, L. (1984). Intervention against loneliness in a group of elderly women: a process evaluation. Social Science & Medicine, 37(4), 295–310.
- Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health, 13(6), 375–384.
- Barrera, M. Jr., Sandler, I. N., & Ramsay, T. B. (1981). Preliminary development of a scale of social support: Studies on college students. American Journal of Community Psychology, 9(4), 435–447.
- Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O'Donnell, M. (2001). The Zarit Burden Interview: a new short version and screening version. Gerontologist, 41(5), 652–657.
- Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale: an updated literature review. Journal of Psychiatric Research, 52(2), 69–77.
- Blanton, S., Dunbar, S., & Clark, P. C. (2018). Content validity and satisfaction with a caregiver-integrated web-based rehabilitation intervention for persons with stroke. Topics in Stroke Rehabilitation, 25(3), 168–173. https://doi.org/10.1080/10749357.2017.1419618
- Brouwer, W., Van Exel, N., Van Gorp, B., & Redekop, W. (2006). The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021.
- Caro, C. C., Costa, J. D., & Da Cruz, D. M. C. (2018). Burden and quality of life of family caregivers of stroke patients. Occup Ther Health Care, 32(2), 154–171. https://doi.org/10.1080/07380577.2018.1449046
- Caunca, M. R., Simonetto, M., Hartley, G., Wright, C. B., & Czaja, S. J. (2020). Design and usability testing of the stroke caregiver support system: A mobile-friendly website to reduce stroke caregiver burden. Rehabilitation Nursing, 45(3), 166–177. https://doi.org/10.1097/RNJ.0000000000000196
- Denham, A. M. J., Wynne, O., Baker, A. L., Spratt, N. J., Turner, A., Magin, P., Janssen, H., English, C., Loh, M., & Bonevski, B. (2019). “This is our life now. Our new normal”: A qualitative study of the unmet needs of carers of stroke survivors. PLOS ONE, 14(5), e0216682. https://doi.org/10.1371/journal.pone.0216682
- Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49(1), 71–75.
- Downs, S. H., & Black, N. (1998). The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. Journal of Epidemiology and Community Health, 52(6), 377–384. https://doi.org/10.1136/jech.52.6.377
- Dyb, K., Berntsen, G. R., & Kvam, L. (2021). Adopt, adapt, or abandon technology-supported person-centred care initiatives: Healthcare providers' beliefs matter. BMC Health Services Research, 21(1), 240. https://doi.org/10.1186/s12913-021-06262-1
- Finch, M., Kane, R. L., & Philp, I. (1995). Developing a new metric for ADLs. Journal of the American Geriatrics Society, 43(8), 877–884.
- Fitzpatrick, G., & Ellingsen, G. (2013). A review of 25 years of CSCW research in healthcare: Contributions, challenges and future agendas. Computer Supported Cooperative Work, 22(4–6), 609–665. https://doi.org/10.1007/s10606-012-9168-0
- Godwin, K. M., Mills, W. L., Anderson, J. A., & Kunik, M. E. (2013). Technology-driven interventions for caregivers of persons with dementia: A systematic review. American Journal of Alzheimer's Disease and Other Dementias, 28(3), 216–222. https://doi.org/10.1177/1533317513481091
- Goldberg, D. (1985). Identifying psychiatric illness among general medical patients. British Medical Journal (Clinical Research Ed), 291(6489), 161.
- Goldberg, D. P., & Williams, P., D.P.M. (1988). A user's guide to the General Health Questionnaire. Windsor, Berks: NFER-Nelson.
- Greene, J., Smith, R., Gardiner, M., & Timbury, G. (1982). Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study. Age Ageing, 11(2), 121–126.
- Hartke, R. J., & King, R. B. (2003). Telephone group intervention for older stroke caregivers. Topics in Stroke Rehabilitation, 9(4), 65–81. https://doi.org/10.1310/RX0A-6E2Y-BU8J-W0VL
- Hoefman, R. J., van Exel, J., & Brouwer, W. B. (2013). Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument. Health Quality of Life Outcomes, 11(1), 173.
- Hultman, M. T., Everson-Rose, S. A., Tracy, M. F., Lindquist, R., & Hadidi, N. N. (2019). Associations between characteristics of stroke survivors and caregiver depressive symptoms: A critical review. Topics in Stroke Rehabilitation, 26(7), 528–537. https://doi.org/10.1080/10749357.2019.1641010
- Johnston, M., Wright, S. C., & Weinman, J. (1995). Measures in health psychology: A user's portfolio. Windsor, UK: Causal and control beliefs: NFER-NELSON.
- Katz, S., Ford, A., Moskowitch, R., Jackson, B., & Jaffe, M. (1963). Studies of illness in the aged. The index of ADL: a standardized measure of biological and psychosocial function. JAMA, 21, 914–919.
- Kensing, F., & Blomberg, J. (1998). Participatory design: Issues and concerns. Computer Supported Cooperative Work (CSCW), 7(3), 167–185. https://doi.org/10.1023/A:1008689307411
10.1023/A:1008689307411 Google Scholar
- Khangura, S., Polisena, J., Clifford, T. J., Farrah, K., & Kamel, C. (2014). Rapid review: An emerging approach to evidence synthesis in health technology assessment. International Journal of Technology Assessment in Health Care, 30(1), 20–27. https://doi.org/10.1017/S0266462313000664
- Krause, N. (1995). Negative interaction and satisfaction with social support among older adults. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 50(2), 59–73.
- Krause, N., & Markides, K. (1990). Measuring social support among older adults. International Journal of Aging & Human Development, 30(1), 37–53.
- Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ-9: validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613.
- Kruithof, W. J., Post, M. W., & Visser-Meily, J. M. (2015). Measuring negative and positive caregiving experiences: a psychometric analysis of the Caregiver Strain Index Expanded. Clinical Rehabilitation, 29(12), 1224–1233.
- Liu, P., Fels, S., West, N., & Görges, M. (2019). Human computer interaction design for mobile devices based on a smart healthcare architecture. arXiv. 1902.03541
- Liu, P.-C., Gau, B.-S., & Hung, C.-C. (2015). Development and psychometric testing of a Chinese version of the caregiver burden index for parents of children with allergies. Journal of Pediatric Nursing, 30(1), 208–218.
- Lobo, E. H., Frølich, A., Rasmussen, L. J., Livingston, P. M., Grundy, J., Abdelrazek, M., & Kensing, F. (2021). Understanding the methodological issues and solutions in the research design of stroke caregiving technology. Frontiers in Public Health, 9, 647249. https://doi.org/10.3389/fpubh.2021.647249
- Lundberg, S. (2014). The results from a two-year case study of an information and communication technology support system for family caregivers. Disability and Rehabilitation. Assistive Technology, 9(4), 353–358. https://doi.org/10.3109/17483107.2013.814170
- Luszczynska, A., Scholz, U., & Schwarzer, R. (2005). The general self-efficacy scale: multicultural validation studies. Journal of Psychology, 139(5), 439–457.
- Lutz, B. J., Chumbler, N. R., Lyles, T., Hoffman, N., & Kobb, R. (2009). Testing a home-telehealth programme for US veterans recovering from stroke and their family caregivers. Disability and Rehabilitation, 31(5), 402–409. https://doi.org/10.1080/09638280802069558
- Mahmood, A., Blaizy, V., Verma, A., Stephen Sequeira, J., Saha, D., Ramachandran, S., Manikandan, N., Unnikrishnan, B., & Solomon, J. M. (2019). Acceptability and attitude towards a mobile-based home exercise program among stroke survivors and caregivers: A cross-sectional study. International Journal of Telemedicine and Applications, 2019, 5903106.
- Malt, U. F. (1989). The validity of the General Health Questionnaire in a sample of accidentally injured adults. Acta Psychiatrica Scandinavica Supplementum, 80, 103–112.
10.1111/j.1600-0447.1989.tb05260.x Google Scholar
- Marcolino, M. S., Oliveira, J. A. Q., D'Agostino, M., Ribeiro, A. L., Alkmim, M. B. M., & Novillo-Ortiz, D. (2018). The impact of mHealth interventions: Systematic review of systematic reviews. JMIR mHealth and uHealth, 6(1), e23. https://doi.org/10.2196/mhealth.8873
- Marziali, E., & Donahue, P. (2006). Caring for others: Internet video-conferencing group intervention for family caregivers of older adults with neurodegenerative disease. Gerontologist, 46(3), 398–403. https://doi.org/10.1093/geront/46.3.398
- Marziali, E., Donahue, P., & Crossin, G. (2005). Caring for others: Internet health care support intervention for family caregivers of persons with Alzheimer's, stroke, or Parkinson's disease. Families in Society, 86(3), 375–383. https://doi.org/10.1606/1044-3894.3435
- Mermelstein, H., Guzman, E., Rabinowitz, T., Krupinski, E., & Hilty, D. (2017). The application of technology to health: The evolution of telephone to telemedicine and Telepsychiatry: A historical review and look at human factors. J. Technol. Behav. Sci, 2(1), 5–20. https://doi.org/10.1007/s41347-017-0010-x
10.1007/s41347-017-0010-x Google Scholar
- Morgan, D. L., Krueger, R. A., & King, J. A. (1998). The focus group kit (Vol. 1-6). Sage Publications, Inc.
- Mortenson, W. B., Demers, L., Fuhrer, M. J., Jutai, J. W., Lenker, J., & DeRuyter, F. (2012). How assistive technology use by individuals with disabilities impacts their caregivers: A systematic review of the research evidence. American Journal of Physical Medicine & Rehabilitation, 91(11), 984–998. https://doi.org/10.1097/PHM.0b013e318269eceb
- National Center for Health Statistics (NCHS). (1987). Current estimates from the National Interview Survey. Washington, D.C.
- Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30(5), 583–594.
- Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19, 2–21.
- Pettit, T., Livingston, G., Manela, M., Kitchen, G., Katona, C., & Bowling, A. (2001). Validation and normative data of health status measures in older people: the Islington study. International Journal of Geriatric Psychiatry, 16(11), 1061–1070.
- Pierce, L. L., Steiner, V. L., Khuder, S. A., Govoni, A. L., & Horn, L. J. (2009). The effect of a web-based stroke intervention on carers' well-being and survivors' use of healthcare services. Disability and Rehabilitation, 31(20), 1676–1684. https://doi.org/10.1080/09638280902751972
- Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385–401.
10.1177/014662167700100306 Google Scholar
- Robinson, B. C. (1983). Validation of a caregiver strain index. Journal of Gerontoloy, 38(3), 344–348.
- Rosenberg, M. (2015). Society and the adolescent self-image. Princeton University Press.
- Russell, D., Peplau, L. A., & Cutrona, C. E. (1980). The revised UCLA Loneliness Scale: concurrent and discriminant validity evidence. Journal of Personality and Social Psychology, 39(3), 472.
- Sherbourne, C. D., & Stewart, A. L. (1991). The MOS social support survey. Social Science & Medicine, 32(6), 705–714.
- Smith, G. C., Egbert, N., Dellman-Jenkins, M., Nanna, K., & Palmieri, P. A. (2012). Reducing depression in stroke survivors and their informal caregivers: A randomized clinical trial of a web-based intervention. Rehabilitation Psychology, 57(3), 196–206. https://doi.org/10.1037/a0029587
- Steffen, A. M., McKibbin, C., Zeiss, A. M., Gallagher-Thompson, D., & Bandura, A. (2002). The revised scale for caregiving self-efficacy: Reliability and validity studies. Journal of Gerontology Psychological Science, 57(1), 74–86.
- Stone, K. (2013). Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website. Rehabilitation Nursing, 39(2), 76–85. https://doi.org/10.1002/rnj.123
- Sureshkumar, K., Murthy, G. V. S., Natarajan, S., Naveen, C., Goenka, S., & Kuper, H. (2016). Evaluation of the feasibility and acceptability of the ‘Care for Stroke'intervention in India, a smartphone-enabled, carer-supported, educational intervention for management of disability following stroke. BMJ Open, 6(2), e009243. https://doi.org/10.1136/bmjopen-2015-009243
- Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P. P. (1992). Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychology and Aging, 7(4), 622.
- Torp, S., Hanson, E., Hauge, S., Ulstein, I., & Magnusson, L. (2008). A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway. Health & Social Care in the Community, 16(1), 75–85. https://doi.org/10.1111/j.1365-2524.2007.00725.x
- Tricco, A. C., Langlois, E., & Straus, S. E. (2017). Rapid Reviews to Strengthen Health Policy and Systems: A Practical Guide: World Health Organization.
- Valko, P. O., Bassetti, C. L., Bloch, K. E., Held, U., & Baumann, C. R. (2008). Validation of the fatigue severity scale in a Swiss cohort. Sleep, 31(11), 1601–1607.
- van den Berg, M., Crotty, M., Liu, E., Killington, M., Kwakkel, G., & van Wegen, E. (2016). Early supported discharge by caregiver-mediated exercises and e-health support after stroke: A proof-of-concept trial. Stroke, 47(7), 1885–1892. https://doi.org/10.1161/STROKEAHA.116.013431
- Visser-Meily, J. A., Post, M. W., Riphagen, I. I., & Lindeman, E. (2004). Measures used to assess burden among caregivers of stroke patients: a review. Clinical Rehabilitation, 18(6), 601–623.
- Vloothuis, J., Mulder, M., Nijland, R., Goedhart, Q. S., Konijnenbelt, M., Mulder, H., Hertogh, C., van Tulder, M., van Wegen, E., & Kwakkel, G. (2019). Caregiver-mediated exercises with e-health support for early supported discharge after stroke (CARE4STROKE): A randomized controlled trial. PLoS ONE, 14(4), e0214241. https://doi.org/10.1371/journal.pone.0214241
- Wu, Q., Qian, S., Deng, C., & Yu, P. (2020). Understanding interactions between caregivers and care recipients in person-centered dementia care: A rapid review. Clinical Interventions in Aging, 15, 1637–1647. https://doi.org/10.2147/CIA.S255454
- Zarit, S. H., & Zarit, J. M. (1990). The memory and behavior problems checklist and the burden interview. Pennsylvania, USA: Gerontology Center, the Pennsylvania State University.
- Zhou, B., Zhang, J., Zhao, Y., Li, X., Anderson, C. S., Xie, B., Wang, N., Zhang, Y., Tang, X., Prvu Bettger, J., Chen, S., Gu, W., Luo, R., Zhao, Q., Li, X., Sun, Z., Lindley, R. I., Lamb, S. E., Wu, Y., … Yan, L. L. (2019). Caregiver-delivered stroke rehabilitation in rural China: The RECOVER randomized controlled trial. Stroke, 50(7), 1825–1830. https://doi.org/10.1161/STROKEAHA.118.021558
- Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatr Scand, 67(6), 361–370.
- Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52(1), 30–41.
- Zwicker, D. (2010). Try this: best practices in nursing care to older adults. Preparedness for Caregiving Scale, 15, 2011.