Neurological patient and informal caregiver quality of life, and caregiver burden: A cross-sectional study of postdischarge community neurological nursing recipients

References

• Aarli, J.A., Dua, T., Janca, A., & Muscetta, A. (2006). Neurological disorders: Public health challenges. Geneva, Switzerland: World Health Organisation.
   Google Scholar
• Alkema, G. (2016). American perceptions and the realities of aging, disability, and independence. In J. Alper & S. Domnitz (Eds.), Policy and research needs to maximize independence and support community living: Workshop summary (pp. 11–14). Washington (DC): National Academies Press (US).
   Google Scholar
• American Psychological Association. (2016). Zarit Burden Interview [Online]. http://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/zarit.aspx.
   Google Scholar
• Australian Institute of Health and Welfare. (2016a). Admitted patient care 2014-15: Australian hospital statistics. ACT: AIHW.
   Google Scholar
• Australian Institute of Health and Welfare. (2016b). Australian burden of disease study: Impact and causes of illness and deaths in Australia 2011. ACT: AIHW.
   Google Scholar
• Australian Institute of Health and Welfare. (2016c). Emergency department care 2015-16: Australian hospital statistics. (Health Services Series No. 72. Cat. no. HSE 182). AIHW.
   Google Scholar
• Australian Institute of Health and Welfare. (2017). Admitted patient care 2015-16: Australian hospital statistics. (Health Services Series No. 75. Cat. no. HSE 185). ACT: AIHW.
   Google Scholar
• Bédard, M., Pedlar, D., Martin, N. J., Malott, O., & Stones, M. J. (2000). Burden in caregivers of cognitively impaired older adults living in the community: Methodological issues and determinants. International Psychogeriatrics, 12(3), 307–332. https://doi.org/10.1017/S1041610200006426
   PubMed Web of Science ®Google Scholar
• Begg, S., Vos, T., Barker, B., Stevenson, C., Stanley, L., & Lopez, A. D. (2007). The burden of disease and injury in Australia, 2003. PHE 82.
   Google Scholar
• Bittman, M., Hill, T., & Thomson, C. (2007). The impact of caring on informal carers’ employment, income and earnings: A longitudinal approach. Australian Journal of Social Issues, 42(2), 255–272. 136. https://doi.org/10.1002/j.1839-4655.2007.tb00053.x
   Web of Science ®Google Scholar
• Bulmer, M. G. (1979). Principles of statistics. Dover Publications.
   Google Scholar
• Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. (2011). Help wanted? Providing and paying for long-term care. OECD Health Policy Studies, OECD Publishing.
   Google Scholar
• Danker, R., Bachner, Y. G., Ginsberg, G., Ziv, A., David, H. B., Litmanovitch-Goldstein, D., Chodick, G., Balicer, R., Tanne, D., & Greenberg, D. (2016). Correlates of well-being among caregivers of long-term community-dwelling stroke survivors. International Journal of Rehabilitation Research, 39(4), 326–330. https://doi.org/10.1097/MRR.0000000000000192
   PubMed Web of Science ®Google Scholar
• Department of Health WA. (2014). Managing Well Neuro’ Checklist v6.0.
   Google Scholar
• Department of Health WA. . (2015a). Epidemiology profile of neurological conditions in Western Australia 2015. Health Networks Branch, Department of Health WA.
   Google Scholar
• Department of Health WA. (2015b). Review of non-admitted outpatients and community services for neurological conditions 2015.
   Google Scholar
• Department of Health WA. (2015c). WA health strategic intent 2015-2020.
   Google Scholar
• du Prel, J.-B., Hommel, G., Röhrig, B., & Blettner, M. (2009). Confidence interval or p-value? Deutsches Ärzteblatt International, 106(19), 335–339. https://doi.org/10.3238/arztebl.2009.0335
   Web of Science ®Google Scholar
• Filipska, K., Wisniewski, A., Krolikowska, A., Jablonska, R., Haor, B., Szewczyk, M. T., & Slusarz, R. (2020). Quality of life and predictors among neurosurgical patients-systematic review of research. The Journal of Neurological and Neurosurgical Nursing, 9(3), 114–118. https://doi.org/10.15225/PNN.2020.9.3.5
   Google Scholar
• Hall, C. J., Peel, N. M., Comans, T. A., Gray, L. C., & Scuffham, P. A. (2012). Can post-acute care programmes for older people reduce overall costs in the health system? A case study using the Australian transition care programme. Health & Social Care in the Community, 20(1), 97–102. https://doi.org/10.1111/j.1365-2524.2011.01024.x
   PubMed Web of Science ®Google Scholar
• Hawthorne, G., Herrman, H., & Murphy, B. (2006). Interpreting the WHOQOL-BREF: Preliminary population norms and effect sizes. Social Indicators Research, 77(1), 37–59. https://doi.org/10.1007/s11205-005-5552-1
   Web of Science ®Google Scholar
• Hoad, V., Somerford, P., & Katzenellenbogen, J. (2010). The burden of disease and injury attributed to preventable risks to health in Western Australia, 2006. Epidemiology Branch, Department of Health WA.
   Google Scholar
• id Consulting. (2018). Australia household income quartiles [Online]. https://profile.id.com.au/australia/household-income-quartiles?BMID = 44.
   Google Scholar
• Iowa Geriatric Education Centre. (2016). Burden interview. Iowa Geriatric Education Centre, The University of Iowa.
   Google Scholar
• Jeong, Y.-G., Myong, J.-P., & Koo, J.-W. (2015). The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients. Disability and Health Journal, 8(4), 619–625. https://doi.org/10.1016/j.dhjo.2015.05.005
   PubMed Web of Science ®Google Scholar
• Katterl, R., Anikeeva, O., Butler, C., Brown, L., Smith, B., & Bywood, P. (2012). Potentially avoidable hospitalisations in Australia: Causes for hospitalisations and primary health care interventions. Primary Health Care Research & Information Service.
   Google Scholar
• Kilkenny, M. F., Longworth, M., Pollack, M., Levi, C., & Cadilhac, D. A. (2013). Factors associated with 28-day hospital readmission after stroke in Australia. Stroke, 44(8), 2260–2268. https://doi.org/10.1161/STROKEAHA.111.000531
   PubMed Web of Science ®Google Scholar
• Leppin, A. L., Gionfriddo, M. R., Kessler, M., Brito, J. P., Mair, F. S., Gallacher, K., Wang, Z., Erwin, P. J., Sylvester, T., Boehmer, K., Ting, H. H., Murad, M. H., Shippee, N. D., & Montori, V. M. (2014). Preventing 30-day hospital readmissions: A systematic review and meta-analysis of randomized trials. JAMA Internal Medicine, 174(7), 1095–1107. https://doi.org/10.1001/jamainternmed.2014.1608
   PubMed Web of Science ®Google Scholar
• Lisby, M., Klingenberg, M., Ahrensberg, J. M., Hoeyem, P. H., & Kirkegaard, H. (2019). Clinical impact of a comprehensive nurse-led discharge intervention on patients being discharged home from an acute medical unit: Randomised controlled trial.. International Journal of Nursing Studies, 100(103411), 103411–103410. https://doi.org/10.1016/j.ijnurstu.2019.103411.
   PubMedGoogle Scholar
• Longman, J. M., Singer, J. B., Gao, Y., Barclay, L. M., Passey, M. E., Pirotta, J. P., Heathcote, K. E., Ewald, D. P., Saberi, V., Corben, P., & Morgan, G. G. (2011). Community based service providers’ perspectives on frequent and/or avoidable admission of older people with chronic disease in rural NSW: A qualitative study. BMC Health Services Research, 11(1), 265. https://doi.org/10.1186/1472-6963-11-265
   PubMedGoogle Scholar
• McCoy, K., & Chan, H. (2016). A neurological integrated care pathway. Australasian Journal of Neuroscience, 26(1), 38–43. https://doi.org/10.21307/ajon-2017-125
   Google Scholar
• Moeller, D., & Carpenter, C. (2013). Factors affecting quality of life for people who have experienced a stroke. International Journal of Therapy and Rehabilitation, 20(4), 207–216. https://doi.org/10.12968/ijtr.2013.20.4.207
   Google Scholar
• Murphy, B., Herrman, H., Hawthorne, G., Pinzone, T., & Evert, H. (2000). Australian WHOQOL-100, WHOQOL-BREF and CA-WHOQOL instruments: User's manual and interpretation guide. Australian WHOQOL Field Study Centre.
   Google Scholar
• Neurological Alliance. (2012). Intelligent outcomes: Applying the health and social care reforms to improve outcomes for people with neurological conditions. MHP Health Mandate.
   Google Scholar
• O'Rourke, N., & Tuokko, H. A. (2003). Psychometric properties of an abridged version of the Zarit Burden Interview within a representative Canadian caregiver sample. The Gerontologist, 43(1), 121–127. https://doi.org/10.1093/geront/43.1.121
   PubMed Web of Science ®Google Scholar
• Pezzullo, L., McKibbin, R., Cheung, S., & Cutler, H. (2010). The economic value of informal care in 2010. ACT: Access Economics & Carers Australia.
   Google Scholar
• Pucciarelli, G., Ausili, D., Galbussera, A. A., Rebora, P., Savini, S., Simeone, S., Alvaro, R., & Vellone, E. (2018). Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study. Journal of Advanced Nursing, 74(8), 1875–1887. https://doi.org/10.1111/jan.13695
   Web of Science ®Google Scholar
• Pugh, J. D., McCoy, K., Williams, A. M., Bentley, B., & Monterosso, L. (2019a). Rapid evidence assessment of approaches to community neurological nursing care for people with neurological conditions post-discharge from acute care hospital. Health & Social Care in the Community, 27(1), 43–54. https://doi.org/10.1111/hsc.12576
   PubMed Web of Science ®Google Scholar
• Pugh, J. D., Williams, A. M., Bentley, B., Pienaar, C., & McCoy, K. (2019b). Neurological patients’ and caregivers’ post-discharge challenges explored in a World Café. Collegian, 26(5), 528–533. https://doi.org/10.1016/j.colegn.2019.02.004
   Web of Science ®Google Scholar
• Raad, J., Rehabilitation Measures Team, TBI EDGE Task Force, Bussman, A., Falk, S., Tappan, R., Anna, D. J., Hussey, E. & PD EDGE task force (2014). Rehabilitation Measures Database: WHO quality of life-BREF (WHOQOL-BREF) [Online]. Rehabilitation Institute of Chicago. https://www.sralab.org/rehabilitation-measures/who-quality-life-bref-whoqol-bref.
   Google Scholar
• Rajtar-Bojarczuk, K., Fidecki, W., Wysokiński, M., Walas, L., Kulina, D., & Kuszplak, K. (2019). Self-evaluation of the quality of life of seniors with neurological disorders. The Journal of Neurological and Neurosurgical Nursing, 8(10), 11–15. https://doi.org/10.15225/PNN.2019.8.1.2
   Google Scholar
• Rankin, E. D., Haut, M. W., Keefover, R. W., & Franzen, M. D. (1994). The establishment of clinical cutoffs in measuring caregiver burden in dementia. The Gerontologist, 34(6), 828–832. https://doi.org/10.1093/geront/34.6.828
   PubMed Web of Science ®Google Scholar
• Rehabilitation Institute of Chicago. (2018). Rehabilitation Measures Database: Zarit Burden Interview [Online]. https://www.sralab.org/rehabilitation-measures/zarit-burden-interview.
   Google Scholar
• Reinhard, S. C., Given, B., Petlick, N. H., & Bemis, A. (2008). Supporting family caregivers in providing care. In R. G. Hughes (Ed.), Patient safety and quality: An evidence-based handbook for nurses. Chapter 14. Agency for Healthcare Research & Quality.
   Google Scholar
• Schofield, D., Cunich, M., Shrestha, R., Passey, M., Kelly, S., Tanton, R., & Veerman, L. (2014). The impact of chronic conditions of care recipients on the labour force participation of informal carers in Australia: Which conditions are associated with higher rates of non-participation in the labour force? BMC Public Health, 14(1), 561–561. https://doi.org/10.1186/1471-2458-14-561
   PubMedGoogle Scholar
• Schreiner, A. S., Morimoto, T., Arai, Y., & Zarit, S. (2006). Assessing family caregiver's mental health using a statistically derived cut-off score for the Zarit Burden interview. Aging & Mental Health, 10(2), 107–111. https://doi.org/10.1080/13607860500312142
   PubMed Web of Science ®Google Scholar
• Skevington, S. M., & McCrate, F. M. (2012). Expecting a good quality of life in health: Assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expectations, 15(1), 49–62. https://doi.org/10.1111/j.1369-7625.2010.00650.x
   PubMed Web of Science ®Google Scholar
• Vos, T., Goss, J., Begg, S., & Mann, N. (2007). Projection of health care expenditure by disease: A case study from Australia. Development Policy and Analysis Division, United Nations.
   Google Scholar
• World Health Organization. (2016). What are neurological disorders? [Online]. http://www.who.int/features/qa/55/en/.
   Google Scholar
• Zarit, S. H. (1980). Zarit Burden Interview (ZBI). Mapi Research Trust.
   Google Scholar
• Zarit, S. H., & Trust, M. R. (2014). ZBI Zarit Burden Interview Version 1.0: Scaling and scoring Version 3.0. FRA: Mapi Research Trust.
   Google Scholar