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Review Article

Defining dignity at the intersection of disability: a scoping review

ORCID Icon, , ORCID Icon & ORCID Icon
Received 11 Aug 2023, Accepted 27 Dec 2023, Published online: 24 Jan 2024

References

  • United Nations. Convention on the rights of persons with disabilities (CRPD). 2006. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html.
  • Gilabert P. Human dignity and human rights. Oxford: Oxford University Press; 2018.
  • Lind JD, Powell-Cope G, Chaves MA, et al. Negotiating domains of patient dignity in VA spinal cord injury units: perspective from interdisciplinary care teams and veterans. Ann Anthropol Pract. 2014;37(2):130–148. doi: 10.1111/napa.12027.
  • Jacobson N. A taxonomy of dignity: a grounded theory study. BMC Int Health Hum Rights. 2009;9(1):3. (doi: 10.1186/1472-698X-9-3.
  • Baillie L. Patient dignity in an acute hospital setting: a case study. Int J Nurs Stud. 2009;46(1):23–36. doi: 10.1016/j.ijnurstu.2008.08.003.
  • Berglund B, Mattiasson AC, Randers I. Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome. Disabil Rehabil. 2010;32(1):1–7. doi: 10.3109/09638280903178407.
  • Brown SM, Azoulay E, Benoit D, et al. The practice of respect in the ICU. Am J Respir Crit Care Med. 2018;197(11):1389–1395. doi: 10.1164/rccm.201708-1676CP.
  • Gazarian PK, Morrison C, Lehmann L, et al. Patients’ and care partners’ perspectives on dignity and respect during acute care hospitalization. J Patient Saf. 2020;17(5):392–397. doi: 10.1097/PTS.0000000000000353.
  • Clark J. Defining the concept of dignity and developing a model to promote its use in practice. Nurse Times. 2010;106(20):16–19.
  • Jones DA. Human dignity in healthcare: a virtue ethics approach. New Bioeth. 2015;21(1):87–97. doi: 10.1179/2050287715z.00000000059.
  • de Melo-Martin I. Human dignity, transhuman dignity and all that jazz. Am J Bioeth. 2010;10(7):53–55. doi: 10.1080/15265161003686530.
  • Pothier D, Devlin R. Critical disability theory: essays in philosophy, politics, policy, and law. Vancouver: UCB Press; 2006.
  • Goodley D. Disability studies: an interdisciplinary introduction. Melbourne: Sage Publications; 2017.
  • Shildrick M. Minority model: from liberal to neo-liberal futures of disability. In: Vehmas S, Watson N, editors. Routledge handbook of disability studies. 2nd ed. London: Routledge. 2020.
  • Vehmas S, Watson N. Routledge handbook of disability studies. 2nd ed. London: Routledge. 2020
  • World Health Organisation. Disability. 2023. Available from https://www.who.int/news-room/fact-sheets/detail/disability-and-health#:∼:text=An%20estimated%201.3%20billion%20people,1%20in%206%20of%20us.
  • Flynn S. Perspectives on austerity: the impact of the economic recession in intellectually disabled children. Dis Soc. 2017;32(5):678–700. doi: 10.1080/09687599.2017.1310086.
  • Barclay L. Disability with Dignity: justice, Human Rights and equal status. Taylor and Francis Group: Proquest Ebook Central. 2019. Available from https://ebookcentral-proquest-com.libraryproxy.griffith.edu.au/lib/griffith/detail.action?docID=5490915.
  • Carrese JA, Geller G, Branyon ED, et al. Direct observation checklist to measure respect and dignity in the ICU. Crit Care Med. 2017;45(2):263–270. doi: 10.1097/CCM.0000000000002072.
  • Lohne V, Aasgaard T, Caspari S, et al. The lonely battle for dignity: individuals struggling with multiple sclerosis. Nurs Ethics. 2010;17(3):301–311. doi: 10.1177/0969733010361439.
  • Chochinov HM. Dignity-conserving care- a new model for palliative care- helping the patient feel valued. J Am Med Ass. 2002;287(17):2253. doi: 10.1001/jama.287.17.2253.
  • Chapman K, Dixon A, Cocks K, et al. The dignity project framework: an extreme citizen science framework in occupational therapy and rehabilitation research. Aust Occup Ther J. 2022;69(6):742–752. doi: 10.1111/1440-1630.12847.
  • Bonny R, Ballard HL, Jordan R, et al. Public participation in scientific research: defining the field and assessing its potential for informal science education: a CAISE inquiry group report. 2009. Available from https:///www.informalscience.org/sites/default/files/PublicParticipationinScientificResearch.pdf.
  • Cox R, Molineux M, Kendall M, et al. Different in so many ways: exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography. Aust Occup Ther J. 2022;69(6):676–688. doi: 10.1111/1440-1630.12830.
  • Atkin H, Thomson L, Wood O. Co-production in research: co-researcher perspectives on its value and challenges. Brit J Off Ther. 2020;83(7):415–417. doi: 10.1177/0308022620929542.
  • Hammell KRW, Miller WC, Forwell SJ, et al. Sharing the agenda: pondering the politics and practices of occupational therapy research. Scand J Occup Ther. 2012;19(3):297–304. doi: 10.3109/11038128.2011.57415.
  • Cox R, Kendall M, Molineux M, et al. Consumer engagement in occupational therapy health-related research: a scoping review of the Australian occupational therapy journal and a call to action. Aust Occup Ther J. 2021;68(2):180–192. doi: 10.1111/1440-1630.12704.
  • Munn Z, Peters MDJ, Stern C, et al. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143. doi: 10.1186/s12874-018-0611-x.
  • Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32. doi: 10.1080/1364557032000119616.
  • Bray EA, Everett B, George A, et al. Co-designed healthcare transition interventions for adolescents and young adults with chronic conditions: a scoping review. Disabil Rehabil. 2021;44(24):7610–7631. doi: 10.1080/09638288.2021.1979667.
  • Shakespeare T, Watson N. Frameworks, models, theories and experiences for understanding disability. In: Brown RL, editor. The oxford handbook of the sociology of disability. Oxford: Oxford University Press; 2022. Available from doi: 10.1093/oxfordhb/9780190093167.013.1.
  • Ehrlich C, Slattery M, Kendall E. Consumer engagement in health services in Queensland, Australia: a qualitative study about perspectives of engaged consumers. Health Soc Care Community. 2020;28(6):2290–2298. doi: 10.1111/hsc.13050.
  • Zamenopoulous T, Alexiou K. Co-design as collaborative research. Bristol University: AHRC Connected Communities Programme. 2018.
  • Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5(1):69. (doi: 10.1186/1748-5908-5-69.
  • Lockwood C, dos Santos KB, Pap R. Practical guidance for knowledge synthesis: scoping review methods. Asian Nurs Res (Korean Soc Nurs Sci). 2019;13(5):287–294. doi: 10.1016/j.anr.2019.11.002.
  • Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9(1):59. (doi: 10.1186/1471-2288-9-59.
  • Bagheri H, Yaghmaei F, Ashktorab T, et al. Test of a dignity model in patients with heart failure. Nurs Ethics. 2018;25(4):532–546. doi: 10.1177/0969733016658793.
  • Bagheri H, Yaghmaei F, Ashktorab T, et al. Relatinoship between illness-related worries and social dignity in patients with heart failure. Nurs Ethics. 2018;25(5):618–627. doi: 10.1177/0969733016664970.
  • Bagherian S, Sharif F, Zarshenas L, et al. Cancer patients’ perspectives on dignity in care. Nurs Ethics. 2020;27(1):127–140. doi: 10.1177/0969733019845126.
  • Rannikko S, Stolt M, Suhonen R, et al. Dignity realisation of patients with stroke in hospital care: a grounded theory. Nurs Ethics. 2019;26(2):378–389. doi: 10.1177/0969733017710984.
  • Žiaková K, Čáp J, Miertová M, et al. An interpretative phenomenological analysis of dignity in people with multiple sclerosis. Nurs Ethics. 2020;27(3):686–700. doi: 10.1177/0969733019897766.
  • Azadi M, Azarbayejani M, Tabatabie SKRZ. Dignity in Iranian cancer patients: a qualitative approach. Mental Health Relig Culture. 2020;23(7):519–531. doi: 10.1080/13674676.2020.1712592.
  • Collins B, Hall J, Hundley V, et al. Effective communication: core to promoting respectful maternity care for disabled women. Midwifery. 2023;116:103525. doi: 10.1016/j.midw.2022.103525.
  • Gibson BE, Secker B, Rolfe D, et al. Disability and dignity-enabling home environments. Soc Sci Med. 2012;74(2):211–219. doi: 10.1016/j.socscimed.2011.10.006.
  • Kirk TN, Haegele JA, McKay C. Exploring dignity among elite athletes with disabilities during a sport-focused disability awareness program. Sport, Ed Soc. 2021;26(2):148–160. doi: 10.1080/13573322.2020.1713078.
  • Lopez C, Bertram-Farough A, Heywood D, et al. Knowing about you: eliciting dimensions of personhood within tuberculosis care. Int J Tuberc Lung Dis. 2017;21(2):149–153. doi: 10.5588/ijtld.16.0630.
  • Podolinská L, Čáp J. Dignity of patients with multiple sclerosis: a qualitative descriptive study. Cent Eur J Nurs Midw. 2021;12(3):413–419. doi: 10.15452/cejnm.2021.12.0016.
  • Tehranineshat B, Rakhshan M, Torabizadeh C, et al. The dignity of burns patients: a qualitative descriptive study of nurses, family caregivers, and patients. BMC Nurs. 2021;20(1):205. doi: 10.1186/s12912-021-00725-3.
  • Tomkins B, Siyambalapitiya S, Worrall L. What do people with aphasia think about their health care? Factors influencing satisfaction and dissatisfaction. Aphasiology. 2013;27(8):972–991. doi: 10.080/02687038.2013.811211.
  • Nygren Zotterman A, Skär L, Söderberg S. Dignity encounters: the experiences of people with long-term illnesses and their close relatives within a primary healthcare setting. Prim Health Care Res Dev. 2022;23(e72):1–6. doi: 10.1017/S1463423622000603.
  • Frounfelker SA, Bartone A. The importance of dignity and choice for people assessed as having intellectual disabilities. J Intellect Disabil. 2021;25(4):490–506. doi: 10.1177/1744629520905204.
  • Hubbard RE, Bak M, Watts J, et al. Enhancing dignity for older inpatients: the photograph-next-to-the-bed study. Clin Gerontol. 2018;41(5):468–473. doi: 10.1080/07317115.2017.1398796.
  • Jensen PR. Undignified dignity: using humor to manage the stigma of mental illness and homelessness. Comm Quart. 2018;66(1):20–37. doi: 10.1080/01463373.2017.1325384.
  • Avestan Z, Rahmani A, Heshmati-Nabayi F, et al. Perceptions of iranian cancer patients regarding respecting their dignity in hospital settings. Asian Pac J Cancer Prev. 2015;16(13):5453–5458. doi: 10.7314/apjcp.2015.16.13.5453.
  • Khorasanizadeh MH, Noee MG, Jamshidi T, et al. A comparative survey of the attitudes of nurses, nursing students, and patients as to the observance of the patients’ dignity in the psychiatric ward. AMJ. 2018;11(5):273–277. doi: 10.21767/AMJ.2017.3263.
  • Klůzová Kráčmarová L, Tomanová J, Černíková KA, et al. Perception of dignity in older men and women in the early stages of dementia: a cross-sectional study. BMC Geriatr. 2022;22(1):684. doi: 10.1186/s12877-022-03362-3.
  • Philipp R, Mehnert A, Lehmann C, et al. Detrimental social interactions predict loss of dignity among patients with cancer. Support Care Cancer. 2016;24(6):2751–2758. doi: 10.1007/s00520-016-3090-9.
  • Series L. Disability and human rights. In Vehmas S, Watson N, editor. Routledge handbook of disability studies. 2nd edition. Longond: routledge. 2020.
  • Frankena TK, Naaldenberg J, Cardol M, et al. A consensus statement on how to conduct inclusive health research. J Intellect Disabil Res. 2019;63(1):1–11. doi: 10.1111/ijr.12486.
  • O’Brien P, McConkey R, García-Iriarte E. Co-researching with people who have intellectual disabilities: insights from a national survey. J Appl Res Intellect Disabil. 2014;27(1):65–75. doi: 10.1111/jar.12074.
  • Beeker T, Glück RK, Ziegenhagen J, et al. Designed to clash? Reflecting on the practical, personal, and structural challenges of collaborative research in psychiatry. Front Psychiatry. 2021;12:701312. doi: 10.3389/fpsyt.2021.701312.
  • Happell B, Scholz B, Gordon S, et al. I don’t think we’ve quite got there yet.” the experience of allyship for mental health consumer researchers. J Psychiatr Ment Health Nurs. 2018;25(8):453–462. doi: 10.1111/jpm.12476.
  • Australian Institute of Health and Welfare. Australia’s welfare 2019: data insights. Australian government. 2019. Available from https://www.aihw.gov.au/reports/australias-welfare/australias-welfare-2019-data-insights/contents/summary.
  • Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. Student BMJ. 2007;335(Suppl S3):0709328. doi: 10.1136/sbmj.0709328.
  • Layton NA. Syliva docker lecture: the practice, research, policy, nexus in contemporary occupational therapy. Aust Occup Ther J. 2014;61(2):49–57. doi: 10.1111/1440-1630.12107.
  • Pereira RB, Whiteford G, Hyett N, et al. Capabilities, opportunities, resources and environments (CORE): using the CORE approach for inclusive, occupation-centred practice. Aust Occup Ther J. 2020;67(2):162–171. doi: 10.1111/1440-1630.1264.
  • Rioux MH, Valentine F. Does theory matter? Exploring the nexus between disability, human rights, and public policy. In Pothier D, Devlin R, editors. Critical disability theory: essays in philosophy, politics, policy and law. Vancouver: UCB Press. 2006.