Disagreement about perceptions of patient disability between the stroke patient and caregiver: a cross sectional study exploring the association to patient and caregiver quality of life

References

• Anderson, S., & Keating, N. (2018). Marriage after the transition to stroke: A systematic review. Ageing and Society, 38(11), 2241–2279. https://doi.org/10.1017/S0144686X17000526
   Web of Science ®Google Scholar
• Bakas, T., McCarthy, M. J., & Miller, E. L. (2022). Systematic review of the evidence for stroke family caregiver and dyad interventions. Stroke, 53(6), 2093–2102. https://doi.org/10.1161/STROKEAHA.121.034090
   PubMed Web of Science ®Google Scholar
• Béjot, Y., Bailly, H., Graber, M., Garnier, L., Laville, A., Dubourget, L., Mielle, N., Chevalier, C., Durier, J., & Giroud, M. (2019). Impact of the ageing population on the burden of stroke: The Dijon Stroke Registry. Neuroepidemiology, 52(1–2), 78–85. https://doi.org/10.1159/000492820
   PubMed Web of Science ®Google Scholar
• Clark, P. C., Dunbar, S. B., Shields, C. G., Viswanathan, B., Aycock, D. M., & Wolf, S. L. (2004). Influence of stroke survivor characteristics and family conflict surrounding recovery on caregivers’ mental and physical health. Nursing Research, 53(6), 406–413. https://doi.org/10.1097/00006199-200411000-00009
   PubMed Web of Science ®Google Scholar
• De Wit, L., Theuns, P., Dejaeger, E., Devos, S., Gantenbein, A. R., Kerckhofs, E., Schuback, B., Schupp, W., & Putman, K. (2017). Long-term impact of stroke on patients’ health-related quality of life. Disability and Rehabilitation, 39(14), 1435–1440. https://doi.org/10.1080/09638288.2016.1200676
   PubMed Web of Science ®Google Scholar
• Donkor, E. S. (2018). Stroke in the 21st century: A snapshot of the burden, epidemiology, and quality of life. Stroke Research and Treatment, 2018, 3238165. https://doi.org/10.1155/2018/3238165
   PubMed Web of Science ®Google Scholar
• Duncan, P. W., Lai, S. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the Stroke Impact Scale. Stroke, 33(11), 2593–2599. https://doi.org/10.1161/01.str.0000034395.06874.3e
   PubMed Web of Science ®Google Scholar
• Fekete, C., Tough, H., Siegrist, J., & Brinkhof, M. W. (2017). Health impact of objective burden, subjective burden and positive aspects of caregiving: An observational study among caregivers in Switzerland. BMJ Open, 7(12), e017369. https://doi.org/10.1136/bmjopen-2017-017369[PMC][29275339
   PubMed Web of Science ®Google Scholar
• Fox-Wasylyshyn, S. M., & El-Masri, M. M. (2005). Handling missing data in self-report measures. Research in Nursing & Health, 28(6), 488–495. https://doi.org/10.1002/nur.20100
   PubMed Web of Science ®Google Scholar
• Graham, C. (2007). Mixed mode surveys: A review for the NHS acute patient survey programme. Picker Institute Europe.
   Google Scholar
• Hajek, A., Brettschneider, C., Ernst, A., Lange, C., Wiese, B., Prokein, J., Weyerer, S., Werle, J., Pentzek, M., Fuchs, A., Stein, J., Bickel, H., Mösch, E., Heser, K., Jessen, F., Maier, W., Scherer, M., Riedel-Heller, S. G., & König, H. H. (2015). Complex coevolution of depression and health-related quality of life in old age. Quality of Life Research, 24(11), 2713–2722. https://doi.org/10.1007/s11136-015-1005-8
   PubMed Web of Science ®Google Scholar
• Haley, W. E., Allen, J. Y., Grant, J. S., Clay, O. J., Perkins, M., & Roth, D. L. (2009). Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiological study. Stroke, 40(6), 2129–2133. https://doi.org/10.1161/STROKEAHA.108.545269
   PubMed Web of Science ®Google Scholar
• Haley, W. E., Roth, D. L., Hovater, M., & Clay, O. J. (2015). Long-term impact of stroke on family caregiver well-being: A population-based case-control study. Neurology, 84(13), 1323–1329. https://doi.org/10.1212/WNL.0000000000001418
   PubMed Web of Science ®Google Scholar
• Hawthorne, G., & Elliott, P. (2005). Imputing cross-sectional missing data: Comparison of common techniques. The Australian and New Zealand Journal of Psychiatry, 39(7), 583–590. https://doi.org/10.1080/j.1440-1614.2005.01630.x
   PubMed Web of Science ®Google Scholar
• Katz, M. (2011). Multivariable analysis: A practical guide for clinicians and public health researchers (3rd ed.) Cambridge University Press. (Kihara M, Kihara-Ono M, trans.). https://doi.org/10.1017/CBO9780511974175
   Google Scholar
• Knapp, P., Dunn-Roberts, A., Sahib, N., Cook, L., Astin, F., Kontou, E., & Thomas, S. A. (2020). Frequency of anxiety after stroke: An updated systematic review and meta-analysis of observational studies. International Journal of Stroke, 15(3), 244–255. https://doi.org/10.1177/1747493019896958
   PubMed Web of Science ®Google Scholar
• Lindsay, M. P., Norrving, B., Sacco, R. L., Brainin, M., Hacke, W., Martins, S., Pandian, J., & Feigin, V. (2019). World Stroke Organization (WSO): Global Stroke Fact Sheet 2019. International Journal of Stroke, 14(8), 806–817. https://doi.org/10.1177/174749301988135
   PubMed Web of Science ®Google Scholar
• Loh, A. Z., Tan, J. S., Zhang, M. W., & Ho, R. C. (2017). The global prevalence of anxiety and depressive symptoms among caregivers of stroke survivors. Journal of the American Medical Directors Association, 18(2), 111–116. https://doi.org/10.1016/j.jamda.2016.08.014
   PubMed Web of Science ®Google Scholar
• Luppa, M., Sikorski, C., Luck, T., Weyerer, S., Villringer, A., König, H. H., & Riedel-Heller, S. G. (2012). Prevalence and risk factors of depressive symptoms in latest life–results of the Leipzig Longitudinal Study of the Aged (LEILA 75+). International Journal of Geriatric Psychiatry, 27(3), 286–295. https://doi.org/10.1002/gps.2718
   PubMed Web of Science ®Google Scholar
• Lyons, K. S., & Lee, C. S. (2018). The theory of dyadic illness management. Journal of Family Nursing, 24(1), 8–28. https://doi.org/10.1177/1074840717745669
   PubMed Web of Science ®Google Scholar
• McCarthy, M. J., Bakas, T., Schellinger, J., Stapleton, K., & Kissela, B. M. (2018). Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers. Topics in Stroke Rehabilitation, 25(8), 569–575. https://doi.org/10.1080/10749357.2018.1503458
   PubMed Web of Science ®Google Scholar
• McCarthy, M. J., & Lyons, K. S. (2015). Incongruence between stroke survivor and spouse perceptions of survivor functioning and effects on spouse mental health: A mixed-methods pilot study. Aging & Mental Health, 19(1), 46–54. https://doi.org/10.1080/13607863.2014.913551
   PubMed Web of Science ®Google Scholar
• McCarthy, M. J., Lyons, K. S., Schellinger, J., Stapleton, K., & Bakas, T. (2020). Interpersonal relationship challenges among stroke survivors and family caregivers. Social Work in Health Care, 59(2), 91–107. https://doi.org/10.1080/00981389.2020.1714827
   PubMed Web of Science ®Google Scholar
• McKevitt, C., Redfern, J., Mold, F., & Wolfe, C. (2004). Qualitative studies of stroke: A systematic review. Stroke, 35(6), 1499–1505. https://doi.org/10.1161/01.STR.0000127532.64840.36
   PubMed Web of Science ®Google Scholar
• Miyai, I., Sonoda, S., Nagai, S., Takayama, Y., Inoue, Y., Kakehi, A., Kurihara, M., & Ishikawa, M. (2011). Results of new policies for inpatient rehabilitation coverage in Japan. Neurorehabilitation and Neural Repair, 25(6), 540–547. https://doi.org/10.1177/1545968311402696
   PubMed Web of Science ®Google Scholar
• Pucciarelli, G., Lommi, M., Magwood, G. S., Simeone, S., Colaceci, S., Vellone, E., & Alvaro, R. (2021). Effectiveness of dyadic interventions to improve stroke patient-caregiver dyads’ outcomes after discharge: A systematic review and meta-analysis study. European Journal of Cardiovascular Nursing, 20(1), 14–33. https://doi.org/10.1177/1474515120926069
   PubMed Web of Science ®Google Scholar
• Quinn, K., Murray, C., & Malone, C. (2014). Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: A meta-synthesis of qualitative research. Disability and Rehabilitation, 36(3), 185–198. https://doi.org/10.3109/09638288.2013.783630
   PubMed Web of Science ®Google Scholar
• Satink, T., Josephsson, S., Zajec, J., Cup, E. H., de Swart, B. J., & Nijhuis-van der Sanden, M. W. (2016). Negotiating role management through everyday activities: Narratives in action of two stroke survivors and their spouses. Disability and Rehabilitation, 38(24), 2354–2364. https://doi.org/10.3109/09638288.2015.1129442
   PubMed Web of Science ®Google Scholar
• Streiner, D. L., Norman, G. R., & Cairney, J. (2015). Health measurement scales: A practical guide to their development and use (5th ed.) Oxford University Press. (Kihara-Ono M, Kaji M, Kihara M, trans.). https://doi.org/10.1093/med/9780199685219.001.0001
   Google Scholar
• Takashi, N., McCarthy, M. J., Suzuki, R., Ogahara, K., Ono-Kihara, M., Kihara, M., & Nakayama, T. (2021). Association of patient quality of life with the degree of agreement in the perceptions of patient disability within the stroke patient-rehabilitation therapist dyad: A cross-sectional study in postdischarge rehabilitation setting. BMJ Open, 11(5), e043824. https://doi.org/10.1136/bmjopen-2020-043824[PMC][33952542
   PubMed Web of Science ®Google Scholar
• Tamura, K., Harada, S., Sasada, S., & Yamada, T. (2011). An Occupational therapy intervention to reacquire a role for a case who used an outpatient rehabilitation service; necessity of considering a double couple system (in Japanese). Japanese Journal of Occupational Behavior, 14(4), 283–290.
   Google Scholar
• Tazaki, M., & Nakane, Y. (2007). A guide to WHOQOL-26. Revised version. Kaneko Shobo.
   Google Scholar
• Teasell, R. W., McRae, M. P., & Finestone, H. M. (2000). Social issues in the rehabilitation of younger stroke patients. Archives of Physical Medicine and Rehabilitation, 81(2), 205–209. https://doi.org/10.1016/S0003-9993(00)90142-4
   PubMed Web of Science ®Google Scholar
• The Japanese Ministry of Health, Labour and Welfare. (2017). Patient Survey. https://www.mhlw.go.jp/toukei/saikin/hw/kanja/17/index.html
   Google Scholar
• The Japanese Ministry of Health, Labour and Welfare. (2019). Comprehensive Survey of Living Conditions. https://www.e-stat.go.jp/stat-search/files?page=1&layout=datalist&toukei=00450061&tstat=000001141126&cycle=7&tclass1=000001141143&tclass2val=0
   Google Scholar
• The Japanese Ministry of Health, Labour and Welfare. (2020). Annual Report on the Aging Society (in Japanese). https://www8.cao.go.jp/kourei/whitepaper/index-w.html
   Google Scholar
• The WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/s0033291798006667[Mismatch
   PubMed Web of Science ®Google Scholar
• Towfighi, A., Ovbiagele, B., El Husseini, N., Hackett, M. L., Jorge, R. E., Kissela, B. M., Mitchell, P. H., Skolarus, L. E., Whooley, M. A., Williams, L. S., & American Heart Association Stroke Council; Council on Cardiovascular and Stroke Nursing; and Council on Quality of Care and Outcomes Research. (2017). Poststroke depression: A scientific statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 48(2), e30–e43. https://doi.org/10.1161/STR.0000000000000113
   PubMed Web of Science ®Google Scholar
• Twiddy, M., House, A., & Jones, F. (2012). The association between discrepancy in illness representations on distress in stroke patients and carers. Journal of Psychosomatic Research, 72(3), 220–225. https://doi.org/10.1016/j.jpsychores.2011.12.004
   PubMed Web of Science ®Google Scholar
• Üstün, T. B., Kastanjsek, N., Chatterji, S., & Rehm, J. (2010). Measuring health and disability. Manual for WHO disability assessment schedule. WHODAS 2.0. World Health Organization.
   Google Scholar
• Wang, Z., Li, J., Wang, C., Yao, X., Zhao, X., Wang, Y., Li, H., Liu, G., Wang, A., & Wang, Y. (2013). Gender differences in 1-year clinical characteristics and outcomes after stroke: Results from the China National Stroke Registry. PLoS One, 8(2), e56459. https://doi.org/10.1371/journal.pone.0056459
   PubMed Web of Science ®Google Scholar
• Williams, S., & Murray, C. (2013). The experience of engaging in occupation following stroke: A qualitative meta-synthesis. British Journal of Occupational Therapy, 76(8), 370–378. https://doi.org/10.4276/030802213X13757040168351
   Web of Science ®Google Scholar
• Yousufuddin, M., & Young, N. (2019). Aging and ischemic stroke. Aging, 11(9), 2542–2544. https://doi.org/10.18632/aging.101931
   PubMedGoogle Scholar