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Assessment Procedures

An analysis of caregiver burden assessments using the International Classification of Functioning, Disability, and health (ICF): what aspects of burden are measured, and what is missing?

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Pages 3724-3732 | Received 15 Mar 2023, Accepted 25 Aug 2023, Published online: 04 Sep 2023

References

  • International Alliance of Carer Organizations (IACO). Global State of Caring [Internet]. 2021 [cited 2023 Jun 5]. Available from: https://internationalcarers.org/carer-facts/global-carer-stats/.
  • Adelman RD, Tmanova LL, Delgado D, et al. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–1060. doi: 10.1001/jama.2014.304.
  • Chang H-Y, Chiou C-J, Chen N-S. Impact of mental health and caregiver burden on family caregivers’ physical health. Arch Gerontol Geriatr. 2010;50(3):267–271. doi: 10.1016/j.archger.2009.04.006.
  • Lwi SJ, Ford BQ, Casey JJ, et al. Poor caregiver mental health predicts mortality of patients with neurodegenerative disease. Proc. Natl. Acad. Sci. U.S.A. 2017;114(28):7319–7324. doi: 10.1073/pnas.1701597114.
  • Mehri N, Kinney J, Brown S, et al. Informal caregiving and all-cause mortality: a meta-analysis of longitudinal population-based studies. J Appl Gerontol. 2021;40(7):781–791. doi: 10.1177/0733464819893603.
  • Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J Nurs Sci. 2020;7(4):438–445. doi: 10.1016/j.ijnss.2020.07.012.
  • Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655. doi: 10.1093/geront/20.6.649.
  • Given CW, Given B, Stommel M, et al. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–283. doi: 10.1002/nur.4770150406.
  • Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798–803. doi: 10.1093/geront/29.6.798.
  • Robinson BC. Validation of a caregiver strain index. J Gerontol. 1983;38(3):344–348. doi: 10.1093/geronj/38.3.344.
  • Martín-Carrasco M, Otermin P, Pérez-Camo V, et al. EDUCA study: psychometric properties of the Spanish version of the Zarit caregiver burden scale. Aging Ment Health. 2010;14(6):705–711. doi: 10.1080/13607860903586094.
  • World Health Organization. Governments commit to advancements in dementia research and care. [News release]. Geneva, Switzerland. 2015; Available from: https://www.who.int/news/item/17-03-2015-governments-commit-to-advancements-in-dementia-research-and-care.
  • World Health Organization. International Classification of Functioning, Disability and Health (ICF) [Internet]. Available from: https://www.who.int/classifications/international-classification-of-functioning-disability-and-health.
  • Cieza A, Fayed N, Bickenbach J, et al. Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil. 2019;41(5):574–583. doi: 10.3109/09638288.2016.1145258.
  • Cieza A, Kostansjek N. The international classification of functioning, disability and health: the first 20 years. Dev Med Child Neurol. 2021;63(4):363–363. doi: 10.1111/dmcn.14799.
  • Walker LO, Avant KC. Strategies for theory construction in nursing. Pearson/Prentice Hall Upper Saddle River, NJ; 2005.
  • Nagata C, Yada H, Inagaki J. Exploration of the factor structure of the burden experienced by individuals providing end-of-life care at home. Nurs Res Pract. 2018;2018:1–9. doi: 10.1155/2018/1659040.
  • Lee Y-H, Liao Y-C, Shun S-C, et al. Trajectories of caregiver burden and related factors in family caregivers of patients with lung cancer. Psychooncology. 2018;27(6):1493–1500. doi: 10.1002/pon.4678.
  • Senturk SG, Akyol MA, Kucukguclu O. The relationship between caregiver burden and psychological resilience in caregivers of individuals with dementia. Int J Caring Sci. 2018;11:1223–1230.
  • Bekdemir A, İlhan N. Predictors of caregiver burden in caregivers of bedridden patients. J Nurs Res. 2019;27(3):e24. doi: 10.1097/jnr.0000000000000297.
  • Offenbächer M, Cieza A, Brockow T, et al. Are the contents of treatment outcomes in fibromyalgia trials represented in the international classification of functioning, disability, and health? Clin J Pain. 2007;23(8):691–701. doi: 10.1097/AJP.0b013e318148b93d.
  • Fayed N, Schiariti V, Bostan C, et al. Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using world health organization definitions. Qual Life Res. 2011;20(8):1247–1258. doi: 10.1007/s11136-011-9851-5.
  • McHugh ML. Interrater reliability: the kappa statistic. Biochem Med. 2012;22:276–282. doi: 10.11613/BM.2012.031.
  • Bastawrous M. Caregiver burden – a critical discussion. Int J Nurs Stud. 2013;50(3):431–441. doi: 10.1016/j.ijnurstu.2012.10.005.
  • Calderón V, Tennstedt SL. Ethnic differences in the expression of caregiver burden: results of a qualitative study. J Gerontol Social Work. 1998;30(1-2):159–178. doi: 10.1300/J083v30n01_10.
  • Greenwood N, Mackenzie A, Cloud GC, et al. Informal primary carers of stroke survivors living at home–challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil Rehabil. 2009;31(5):337–351. doi: 10.1080/09638280802051721.
  • Creswell JW, Clark VLP. Designing and conducting mixed methods research. Thousand Oaks (CA): Sage Publications; 2017.
  • Lazarus RS, Folkman S. Stress, appraisal, and coping. New York City (NY): Springer Publishing Company; 1984.
  • Perez E, Perrin PB, Lageman SK, et al. Sleep, caregiver burden, and life satisfaction in Parkinson’s disease caregivers: a multinational investigation. Disabil Rehabil. 2022;44(10):1939–1945. doi: 10.1080/09638288.2020.1814878.
  • National Academies of Sciences, Engineering, and Medicine; Division of Behavioral and Social Sciences and Education; Health and Medicine Division; Board on Behavioral, Cognitive, and Sensory Sciences; Board on Health Sciences Policy; Committee on the Health and Medical Dimensions of Social Isolation and Loneliness in Older Adults. Social isolation and loneliness in older adults: opportunities for the health care system. [Internet]. Washington (DC): National Academies Press (US); 2020 [cited 2022 Aug 19]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK557974/.
  • Lee Y-R, Sung K-T. Cultural influences on caregiving burden: cases of Koreans and americans. Int J Aging Hum Dev. 1998;46(2):125–141. doi: 10.2190/PM2C-V93R-NE8H-JWGV.
  • Mui AC. Caregiver strain among black and white daughter caregivers: a role theory perspective. Gerontologist. 1992;32(2):203–212. doi: 10.1093/geront/32.2.203.
  • Son G-R, Wykle ML, Zauszniewski JA. Korean adult child caregivers of older adults with dementia: predictors of burden and satisfaction. J Gerontol Nurs. 2003;29(1):19–28. doi: 10.3928/0098-9134-20030101-09.
  • Caro CC, Costa JD, Da Cruz DMC. Burden and quality of life of family caregivers of stroke patients. Occup Ther Health Care. 2018;32(2):154–171. doi: 10.1080/07380577.2018.1449046.
  • Zinn S, Bosworth HB, Hoenig HM, et al. Executive function deficits in acute stroke. Arch Phys Med Rehabil. 2007;88(2):173–180. doi: 10.1016/j.apmr.2006.11.015.

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