Methods of communication in medical care respecting the dignity of an intellectually disabled person

Patrycja Zurzycka; Katarzyna Wojtas; Grażyna Puto

Methods of communication in medical care respecting the dignity of an intellectually disabled person

Publication date: 08.09.2022

Art of Healing, Volume 37 (2022), Volume 37, Issue 1, pp. 43 - 50

https://doi.org/10.4467/18982026SZL.22.005.15996

Authors

Pobierz pełny tekst

PDF

Titles

Metody komunikowania w opiece medycznej w poszanowaniu godności osoby niepełnosprawnej intelektualnie [Methods of communication in medical care respecting the dignity of an intellectually disabled person]

Abstract

Niepełnosprawni intelektualnie doświadczają stygmatyzacji, są dyskryminowani i często nie decydują o własnych sprawach. W opiece nad osobami niepełnosprawnymi intelektualnie w szczególny sposób należy zwrócić uwagę na poszanowanie ich godności i podmiotowości. Celem pracy jest podkreślenie wagi poszanowania godności i podmiotowości dorosłych niepełnosprawnych intelektualnie oraz znaczenia komunikowania się z nimi. Artykuł powstał na podstawie analizy piśmiennictwa dotyczącego zagadnień niepełnosprawności intelektualnej. Analiza piśmiennictwa wskazuje, że tematyka niepełnosprawności intelektualnej dotyczy podmiotowości i godności osoby, barier w komunikowaniu się z otoczeniem, w tym z personelem medycznym w środowisku szpitalnym. Prowadzenie badań w zakresie opieki nad osobami z niepełnosprawnością intelektualną jest niezbędne. Ponadto istnieje konieczność organizacji szkoleń dla wszystkich członków zespołu terapeutycznego, zwłaszcza w obszarze zagadnień komunikacji z osobami z niepełnosprawnością intelektualną.

ABSTRACT

People with intellectual disabilities experience stigma and discrimination. In caring for people with intellectual disabilities, special attention should be paid to respecting their dignity and subjectivity. The aim of this study is to emphasize the importance of respecting the dignity and subjectivity of adults with intellectual disabilities and the importance of communicating with them. The paper is based on a literature analysis of intellectual disability issues. The literature analysis indicates that the subject of intellectual disability concerns the subjectivity and the dignity of the people as well as the barriers to communication with the environment and medical personnel. It is fundamental to conduct research into care of people with intellectual disabilities. In addition, there is a need to organize training for all members of the therapeutic team, especially in the area of communication issues with people with intellectual disabilities.

Keywords

godność, komunikowanie, niepełnosprawność intelektualna, opieka; care, communication, dignity, intellectual disability

care, communication, dignity, intellectual disability

References

Download references

Agaronnik N., Campbell E.G., Ressalam J., Iezzoni L.I. (2019). Communicating with patients with disability: perspectives of practicing physicians. Journal of General Internal Medicine, 34 (7), 1139–1145, doi:10.1007/s11606-019-04911-0.

https://doi.org/10.1007/s11606-019-04911-0.

APA –American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Association, http://www.psychiatry.org/dsm5 (dostęp: 6.12.2017).

Appelgren M., Bahtsevani C., Persson K., Borglin G. (2018). Nurses’ experiences of caring for patients with intellectual developmental disorders: a systematic review using a meta-ethnographic approach. BMC Nursing, 17, 51, doi: 10.1186/s12912-018-0316-9.

https://doi.org/10.1186/s12912-018-0316-9.

Charles M.L. (2020). Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities –a qualitative study. Nursing Open, 7 (6), 1725–1734, doi: 10.1002/nop2.557. eCollection 2020 Nov.

Cheshire W.P. (2014). Dignifying intellectual disability. Ethics and Medicine, 30 (2), 71–77.

Doherty A.J., Atherton H., Boland P., Hastings R., Hives L., Hood K., James-Jenkinson L., Leavey R., Randell E., Reed J., Taggart L., Wilson N., Chauhan U. (2020). Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review. BJGP Open, 4 (3), bjgpopen20X101030, doi: 10.3399/bjgpopen20X101030.

https://doi.org/10.3399/bjgpopen20X101030.

Duda-Łyszczyk A. (2019). Metoda Charlesa Blissa jako sposób komunikacji w grupie przedszkolnej – innowacja pedagogiczna pt. W zachwycie ciszy budzi się piękno stów – w pięknie słów zasypia cisza. Zeszyty Naukowe Państwowej Wyższej Szkoły Zawodowej im. Witelona w Legnicy, 32 (3), 55–56.

Ells C. (2001). Lessons about autonomy from the experience of disability. Social Theory and Practice, 27 (4), 599–615, http://www.jstor.org/stable/23559192.

Ferguson M., Jarrett D., Terras M. (2010). Inclusion in healthcare choices: the experiences of adults with learning disabilities. British Journal of Learning Disabilities, 39 (1), 73–83, https://doi.org/10.1111/j.1468-3156.2010.00620.x.

https://doi.org/10.1111/j.1468-3156.2010.00620.x.

Fisher K., Robichaux C., Sauerland J., Stokes F. (2020). A nurses’ ethical commitment to people with intellectual and developmental disabilities. Nursing Ethics, 27 (4), 1066–1076.

Gallagher A. (2014). Dignity toolkit for care homes, “ENACT Project – Empowering nurses to provide ethical leadership in care homes supported by a dignity Toolkit”, https://www.surrey.ac.uk/researchprojects/empowering-nurses-provide-ethical-leadership-care-homes-enact (dostęp: 10.08.2021).

Garcia H.C., Diez E., Wojcik D.Z., Santamaria M. (2020). Communication support needs in adults with intellectual disabilities and its relation to quality of life. International Journal of Environmental Research and Public Health, 17 (20), 7370, https://doi.org/10.3390/ijerph17207370.

https://doi.org/10.3390/ijerph17207370.

Gates B., Bar O. (2009). Oxford Handbook of Learning and Intellectual Disability Nursing. New York: Oxford University Press.

Griffiths C., Smith M. (2016). Attuning: a communication process between people with severe and profound intellectual disability and their interaction partners. Journal of Applied Research in Intellectual Disabilities: JARID, 29 (2), 124–138, https://doi.org/10.1111/jar.12162.

https://doi.org/10.1111/jar.12162.

Gryszka-Mędrek Z. (2012). Wprowadzenie alternatywnych i wspomagających metod komunikacji u dziecka z mózgowym porażeniem dziecięcym. Logopedia Silesiana 1, 140–158.

Hardy S. (2010). Mental Health Nursing of Adults with Learning Disabilities RCN Guidance, London: Royal College of Nursing, https://citeseerx.ist.psu.edu/viewdoc/download?doi=

10.1.1.455.9677&rep=rep1&type=pdf (dostęp: 17.8.2017).

Hardy S. (2013). Dignity in health care for people with learning disabilities. Guidance for nurses, 2nd ed. London: Royal College of Nursing, https://www.academia.edu/29980653/Dignity_in_health_care_for_people_with_learning_disabilities_

RCN_guidance_second_edition [dostęp: 17.2.2018].

Harris J. (2013). New terminology for mental retardation in DSM-5 and ICD-11. Current Opinion in Psychiatry, 26 (3), 260–262, https://doi.org/10.1097/YCO.0b013e32835fd6fb.

https://doi.org/10.1097/YCO.0b013e32835fd6fb.

Havercamp S.M., Scott H.M. (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8 (2), 165–172. https://doi.org/10.1016/j.dhjo.2014.11.002.

https://doi.org/10.1016/j.dhjo.2014.11.002.

Holloway D. (2007). Ethical issues in learning disabilities. W: B. Gates (red.), Learning disabilities. Philadelphia: Elsevier, 67–85.

Howie V.A., Welch A.J., Horton E.S., Wirihana L.A. (2021). The quandary of registered nurses untrained in adult intellectual disability nursing when caring for this diverse patient group in acute care settings: An integrated literature review. Journal of Clinical Nursing, 30 (11–12), 1542–1555, https://doi.org/10.1111/jocn.15663.

https://doi.org/10.1111/jocn.15663.

Jaques H., Lewis P., O’Reilly K., Wiese M., Wilson N.J. (2018). Understanding the contemporary role of the intellectual disability nurse: A review of the literature. Journal of Clinical Nursing, 27 (21–22), 3858–3871, https://doi.org/10.1111/jocn.14555.

https://doi.org/10.1111/jocn.14555.

Kaczorowska-Bray K., Michalik M., Milewski S. (2017). Logopedyczne aspekty starzenia się osób z niepełnosprawnością intelektualną. Logopedia, 46, 285–302.

Kallumkal G. H., Jacob R., Edwards L. (2021). Etiology and management of behavioral disorder in adults with intellectual and developmental disabilities. Cureus, 13 (3), e14221, https://doi.org/10.7759/cureus.14221.

https://doi.org/10.7759/cureus.14221.

Kijak R. (2013). Niepełnosprawność intelektualna. Między diagnozą a działaniem. Warszawa: Centrum Rozwoju Zasobów Ludzkich.

Kildal E., Stadskleiv K., Boysen E.S., Oderud T., Dahl I.L., Seeberg T.M., Guldal S., Strisland F., Morland C., Hassel B. (2021). Increased heart rate functions as a signal of acute distress in non-communicating persons with intellectual disability. Scientific Reports, 11 (1), 6479, https://doi.org/10.1038/s41598-021-86023-6.

https://doi.org/10.1038/s41598-021-86023-6.

Kittay E. (2011).The ethics of care, dependence and disability. Ratio Juris, 24 (1), 49–58.

Lewis P., Gaffney R.J., Wilson N. J. (2017). A narrative review of acute care nurses’ experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers. Journal of Clinical Nursing, 26 (11–12), 1473–1484.

Marcinkiewicz K. (2021). Jak rozmawiać z pacjentem z niepełnosprawnością intelektualną? Medycyna Praktyczna, 5 (82), 81–84.

Martin A.M., Connor-Fenelon M.O., Lyons R. (2012). Non-verbal communication between Registered Nurses Intellectual Disability and people with an intellectual disability: an exploratory study of the nurse’s experiences. Part 1. Journal of Intellectual Disabilities: JOID, 16 (1), 61–75, https://doi.org/10.1177/1744629512440938.

https://doi.org/10.1177/1744629512440938.

Martin A.M., O’Connor-Fenelon M., Lyons R. (2010). Non-verbal communication between nurses and people with an intellectual disability: a review of the literature. Journal of intellectual disabilities: JOID, 14(4), 303–314, https://doi.org/10.1177/1744629510393180.

https://doi.org/10.1177/1744629510393180.

Moloney M., Hennessy T., Doody O. (2021). Reasonable adjustments for people with intellectual disability in acute care: a scoping review of the evidence. BMJ Open, 11(2), e039647, https://doi.org/10.1136/bmjopen-2020-039647.

https://doi.org/10.1136/bmjopen-2020-039647.

Nthekang S., Du Plessis E. (2019). Resilience of auxiliary nurses providing nursing care to patients with intellectual disabilities at a public mental healthcare institution. Curationis, 42 (1), e1–e7, https://doi.org/10.4102/curationis.v42i1.1954.

https://doi.org/10.4102/curationis.v42i1.1954.

Pinazo E.P., Reina M.C. (2017). A model to enhance interaction for people with severe intellectual disability in healthcare, education and interpreting. Procedia – Social and Behavioral Sciences, 237, 1189–1195.

Przybysz-Zaremba M. (2020). Wspomaganie komunikacji osób z niepełnosprawnością intelektualną– przegląd wybranych metod ze wskazówkami w tle. W: L. Kataryńczuk-Mania (red.), Emisja głosu w przestrzeni edukacyjnej, artystycznej i terapeutycznej. Zielona Góra: Instytut Pedagogiki. Wydział Pedagogiki, Psychologii i Socjologii. Uniwersytet Zielonogórski, 287–307.

Roman B. (2010). Ethics in caregiving services for people with serious intellectual disabilities. Ramon Llull Journal of Applied Ethics, 1 (1), 121–142.

Salvador-Carulla L., Rodriguez-Blazquez C., Martorell A. (2008). Intellectual disability: an approach from the health sciences perspective. Salud Publica de Mexico, 50 Suppl 2, 142–150, https://doi.org/10.1590/s0036-36342008000800006.

https://doi.org/10.1590/s0036-36342008000800006.

Scholte F.A., European Association of Intellectual Disability Medicine (2008). European Manifesto: basic standards of healthcare for people with intellectual disabilities. Salud Publica de Mexico, 50 Suppl. 2, 273–276, https://doi.org/10.1590/s0036-36342008000800021.

https://doi.org/10.1590/s0036-36342008000800021.

Sigstada H.M.H., Garrelsa V. (2018) Facilitating qualitative research interviews for respondents with intellectual disability, European Journal of Special Needs Education, 33 (5), 692–706, doi: 10.1080/08856257.2017.1413802.

https://doi.org/10.1080/08856257.2017.1413802.

Spassiani N.A., Abou Chacra M.S., Selick A., Durbin J., Lunsky Y. (2020). Emergency department nurses ’knowledge, skills, and comfort related to caring for patients with intellectual disabilities. International Emergency Nursing, 50, 100851, https://doi.org/10.1016/j.ienj.2020.100851.

https://doi.org/10.1016/j.ienj.2020.100851.

Staniec E. (2018). Metody komunikacji niewerbalnej z osobami niepełnosprawnymi intelektualnie. Edukacja – Technika – Informatyka, 9 (4), 448–459, doi: 10.15584/eti.2018.4.65.

https://doi.org/10.15584/eti.2018.4.65.

Van der Meulen A., Hermsen M.A., Embregts P.J. (2018). Restraints in daily care for people with moderate intellectual disabilities. Nursing Ethics, 25 (1), 54–68, https://doi.org/10.1177/0969733016638141.

https://doi.org/10.1177/0969733016638141.

Vehmas S. (2011). Disability and moral responsibility. Trames, 15 (2), 156–167, https://doi: 10.3176/tr.2011.2.04 1

WHO –World Health Organization (2016). International Statistical Classification of Diseases and Related Health Problems, 10th revision. Geneva: WHO, http://apps.who.int/classifications/icd10/browse/2016/en#/ (dostęp: 8.12.2017).

Zawiślak A. (2006). Częstość występowania pojęć upośledzenie umysłowe (mental retardation) i niepełnosprawność intelektualna (intellectual disability) we współczesnym piśmiennictwie. W: J. Pańczyk (red.). Forum Pedagogów Specjalnych XXI wieku. T. VII. Łódź: Wydawnictwo Uniwersytetu Łódzkiego, 99–107.

Żyta A. (2014). Niepełnosprawność intelektualna – najnowsze zmiany terminologiczne i diagnostyczne w świetle DSM-5, ICD-10 oraz AAID. Niepełnosprawność i Rehabilitacja, 1, 17–26.

Information

Information: Art of Healing, Volume 37 (2022), Volume 37, Issue 1, pp. 43 - 50

DOI: https://doi.org/10.4467/18982026SZL.22.005.15996

Article type: Original article

Titles:

Polish:

English:

Methods of communication in medical care respecting the dignity of an intellectually disabled person

Authors

Patrycja Zurzycka

https://orcid.org/0000-0002-2048-3711

Department of Nursing and Obstetrics, Faculty of Health Sciences, Jagiellonian University Medical College
Poland

Katarzyna Wojtas

https://orcid.org/0000-0003-3171-9352

Department of Nursing and Obstetrics, Faculty of Health Sciences, Jagiellonian University Medical College
Poland

Grażyna Puto

https://orcid.org/0000-0002-0829-327X

Collegium Medicum Jagiellonian University, Kraków, Poland

Published at: 08.09.2022

Article status: Open

Licence: CC BY-NC-ND

Percentage share of authors:

Patrycja Zurzycka (Author) - 33%

Katarzyna Wojtas (Author) - 33%

Grażyna Puto (Author) - 34%

Article corrections:

Publication languages:

English, Polish

View count: 635

Number of downloads: 648

<div id="cke_pastebin"> Methods of communication in medical care respecting the dignity of an intellectually disabled person</div>

Download xml