‘One size does not fit all’ in organ donation and transplantation

Targeting and tailoring communication for migrant and ethnic minority populations

Authors

  • Alessandra Agnese Grossi University of Insubria
  • David Paredes Hospital Clinic, Barcelona and University of Barcelona
  • Vijayanand Palaniswamy Bendigo Health and Monash University
  • Nichon Jansen Dutch Transplant Foundation
  • Mario Picozzi University of Insubria
  • Gurch Randhawa University of Bedfordshire

DOI:

https://doi.org/10.1558/cam.21434

Keywords:

communication, ethics, organ donation and transplantation, migrants and ethnic minorities, tailoring, targeting

Abstract

With increasing immigration to Europe, migrants and ethnic minorities (MEMs) are progressively represented on transplant waiting lists. However, they remain underrepresented among the pools of both deceased and living donors (LD). Further, studies report inferior knowledge and/or understanding of organ donation and transplantation among these populations, with the potential for detrimental impacts on accessibility, quality and outcomes of care. The ethnic and cultural diversity characterising European societies poses additional challenges to the complexity inherent to communication in transplant settings. This study addresses the ethical, theoretical and practical implications of targeting/tailoring interventions for MEM populations in the transplant continuum. It puts forward a call for action on the emergent issue of how institutional actors and healthcare professionals should interact more effectively with MEM publics, potential donors and/or their families and MEM transplant candidates/recipients/LDs.

Author Biographies

  • Alessandra Agnese Grossi, University of Insubria

    Alessandra A. Grossi is a communication and medical ethics specialist, with a background in public and intercultural communication. She received her PhD in Medical Humanities from the University of Insubria, where she is currently a Research Fellow (Department of Human Sciences, Innovation and Territory) and Collaborator (Center for Clinical Ethics). Her research focuses on health disparities (from assessment through to development of interventions), diversity in healthcare, sociocultural influences on health communication processes and person-centred care.

  • David Paredes, Hospital Clinic, Barcelona and University of Barcelona

    David Paredes is a nephrology and internal medicine specialist working as a Consultant at the Donation and Transplant Coordination Section of the Hospital Clinic in Barcelona and as Associate Professor at the
    Surgery Department of the University of Barcelona, Spain. He has also been a member of the Board of the European Donation and Transplant Coordination Organization (EDTCO) since 2013 and EDTCO past chair. His research focuses on expanding criteria for deceased organ donation and transplantation. He is working actively in developing the living organ donor advocate role for transplant coordinators and on how to implement equity, inclusion and diversity in the field of organ donation and transplantation.

  • Vijayanand Palaniswamy, Bendigo Health and Monash University

    Vijayanand Palaniswami is an intensive care specialist working in Australia with both the adult and paediatric population. He has also worked in India in the same role and has helped in developing protocols and practice changes in the field of organ donation.

  • Nichon Jansen, Dutch Transplant Foundation

    Nichon Jansen received her PhD on organ donor shortage in the Netherlands. She is a social scientist, working as a researcher and policy advisor at the Dutch Transplant Foundation in the Netherlands. She is also the past chair of the European Donation and Transplantation Coordination Organisation, which is a section of the European Society for Organ Transplantation. The focus of her research is on post-mortem organ donation.

  • Mario Picozzi, University of Insubria

    Mario Picozzi is Associate Professor of Legal Medicine and Director of the Centre for Clinical Ethics at the University of Insubria. His research focuses on clinical ethics, with a particular emphasis on clinical ethics consultation, beginning- and end-of-life issues and organ transplantation.

  • Gurch Randhawa, University of Bedfordshire

    Gurch Randhawa is Professor of Diversity in Public Health and Director of the Institute for Health Research at the University of Bedfordshire, and Director of the United Kingdom (UK) Organ Donation and Transplant Research Centre. His research focuses on the development of patient-centred care pathways in diabetes, kidney disease, transplantation and end-of-life care amongst diverse communities. His Centre has carried out extensive research – across many countries – examining variation in donation rates among different ethnic and faith communities. The Centre has recently completed a feasibility study to examine whether primary care physicians can influence organ donor registration rates. He was previously commissioned by NHS Blood and Transplant to develop the Faith Engagement and Organ Donation Action Plan, which was published in partnership with Faith Leaders.

References

Ahmed, Hafeez (2017) Oral health: What is gum disease? British Dental Journal 222 (5): 323. https://doi.org/10.1038/sj.bdj.2017.196

Alexander, Karyn, Bianca Brijnath and Danielle Mazza (2014) Barriers and enablers to delivery of the Health Kids Check: An analysis informed by the Theoretical Domains Framework and COM-B model. Implementation Science 9: Article 60. https://doi.org/10.1186/1748-5908-9-60

Alrawiai, Sumaiah, Koula Asimakopoulou and Sasha Scambler (2019) Dentists’ perceptions of a practical model of patient-centred care: Providing information and choice in a dental consultation. Psychology, Health and Medicine 24 (9): 1090–1099. https://doi.org/10.1080/13548506.2019.1595682

Apelian, Nareg, Jean-Noel Vergnes and Christophe Bedos (2020) Is the dental profession ready for person-centred care? British Dental Journal 229 (2): 133–137. https://doi.org/10.1038/s41415-020-1650-3

Asimakopoulou, Koula, Matthew Nolan, Claire McCarthy and Jonathan Newton (2019) The effect of risk communication on periodontal treatment outcomes: A randomized controlled trial. Journal of Periodontology 90 (9): 948–956. https://doi.org/10.1002/JPER.18-0385

Atkins, Lou, Jill Francis, Rafat Islam, Denise O’Connor, Andrea Patey, Noah Ivers, Robbie Foy, Eilidh Duncan et al. (2017) A guide to using the Theoretical Domains Framework of behaviour change to investigate implementation problems. Implementation Science 21: Article 77. https://doi.org/10.1186/s13012-017-0605-9

Barrat, M. Christine (2015) Untitled comment added 2 August to article ‘Periodontal monitoring’. Dental Protection, 27 August 2014. Online: https://web.archive.org/web/20170609200029/https://www.dentalprotection.org/new-zealand/publications-resources/clinical-audit-tools/clinical-audit-tools-display/2014/08/27/periodontal-monitoring

Batchelor, Paul (2014) Is periodontal disease a public health problem? British Dental Journal 217 (8): 405–409. https://doi.org/10.1038/sj.bdj.2014.912

Barnes, Rebecca (2019) Conversation analysis of communication in medical care: Description and beyond. Research on Language and Social Interaction 52 (3): 300–315. https://doi.org/10.1080/08351813.2019.1631056

Boiko, Olga V. (2010) Dentist-patient communica­tion: How do the models correspond? Social Science and Dentistry 1 (2): 57–67.

Boman, Ase, Ina Borup, Lene Povlsen and Elisabeth Dahlborg Lyckhage (2012) Parents’ discursive resources: Analysis of discourses in Swedish, Danish and Norwegian health care guidelines for children with Diabetes type 1. Scandinavian Journal of Caring Sciences 26 (2): 363–371. https://doi.org/10.1111/j.1471-6712.2011.00942.x

Bowman, Marion (2021) A framework for scaffolding academic reflective writing in dentistry. European Journal of Dental Education 25 (1): 35–49. https://doi.org/10.1111/eje.12575

Bowman, Marion, Ruth Payne, Karen Vinall-Collier and Aradhna Tugnait (2022) Conversation, discourse and linguistic analysis in dental communication: Valuable but under-used approaches. British Dental Journal 232 (12): 875–878. https://doi.org/10.1038/s41415-022-4348-x

Braun, Virginia and Victoria Clarke (2006) Using thematic analysis in Psychology. Qualitative Research in Psychology 3 (2): 77–101. https://doi.org/10.1191/1478088706qp063oa

Bridges, Susan M., Colman McGrath, Cythia K. Y. Yiu and Brenda S. S. Cheng (2010) ‘Reassuring’ during clinical examinations. Journal of Asian Pacific Communication. 20 (2): 85–206. https://doi.org/10.1075/japc.20.2.02bri

Cane, James, Denise O’Connor and Susan Michie (2012) Validation of the theoretical domains frame­work for use in behaviour change and implementa­tion research. Implementation Science 7: Article 37. https://doi.org/10.1186/1748-5908-7-37

Carey, Jim A., Anna Madill and Michael Manogue (2010) Communication skills in dental education: A systematic review. European Journal of Dental Education 14: 69-78. https://doi.org/10.1111/j.1600-0579.2009.00586.x

Chapple, Ian L., Fridua Van der Weijden, Christof Doerfer, David Herrera, Lior Shapira, David Polak, Phoebus Madianos, Anna Louropoulou et al. (2015) Primary prevention of periodontitis: Managing gingivitis. Journal of Clinical Periodontology. 42 (16): S71–S76. https://doi.org/10.1111/jcpe.12366

Cheek, Julianne (2004) At the margins? Discourse analysis and qualitative research. Qualitative Health Research 14 (8): 1140–1150. https://doi.org/10.1177/1049732304266820

Cobban, Sandra J., Eunice M. Edgington, Florence Myrick and Louanne Keenan (2009) A discourse on the nature of dental hygiene knowledge and knowing. International Journal of Dental Hygiene 7: 10–16. https://doi.org/10.1111/j.1601-5037.2008.00315.x

Crawford, Tonia, Peter Roger and Sally Candlin (2017) The interactional consequences of ‘empowering discourse’ in intercultural patient education. Patient Education and Counseling 100 (3): 405–500. https://doi.org/10.1016/j.pec.2016.09.017

Croft, Phil, Deborah A. White, Connie M. D. Wiskin and Teresa F. Allan (2005) Evaluation by dental students of a communication skills course using professional role-players in a UK school of dentistry. European Journal of Dental Education 9 (1): 2–9. https://doi.org/10.1111/j.1600-0579.2004.00349.x

Cross, Duncan and Ann Smalldridge (2011) Improv­ing written and verbal communication skills for international medical graduates: A linguistic and medical approach. Medical Teacher 33: e364–e367. https://doi.org/10.3109/0142159X.2011.577469

Dahm, Maria, Lynda Yates, Kathryn Ogden, Kim Rooney and Brooke Sheldon (2015) Enhancing international medical graduates’ communication: The contribution of applied linguistics. Medical Education 49 (8): 828–837. https://doi.org/10.1111/medu.12776

Davis, Karen (2011) Power words in periodontal communication. Online: https://www.rdhmag.com/patient-care/radiology/article/16408614/power-words-in-periodontal-communication

D’Cruz, Len (2010) Risk management in clinical practice. Part 1: Introduction. British Dental Journal 209 (1): 19–23. https://doi.org/10.1038/sj.bdj.2010.579

Dental Defence Union (2014) Probing deeper into periodontics claims. DDU Journal (April): 9–11.

Dental Protection (2016) Dental Protection Horizons Roadshow 2015: How to avoid becoming a statistic. Online: http://www.dentalprotection.org/uk/about/media-centre/press-releases-display/2015/08/28/dental-protection-horizons-roadshow-2015-how-to-avoid-becoming-a-statistic

Francis, Jill, Denise O’Connor and Janet Curran (2012) Theories of behaviour change synthesised into a set of theoretical groupings: Introducing a thematic series on the theoretical domains framework. Implementation Science 7 (35): 7–35. https://doi.org/10.1186/1748-5908-7-35

General Dental Council (2013) Standards for the Dental Team. London: General Dental Council. Online: https://standards.gdc-uk.org/Assets/pdf/Standards%20for%20the%20Dental%20Team.pdf

General Dental Council (2015) Preparing for Practice: Dental Team Learning Outcomes for Registra­tion (revised edition). London: General Dental Council. Online: https://www.gdc-uk.org/docs/default-source/quality-assurance/preparing-for-practice-(revised-2015).pdf

Heritage, John and Douglas W. Maynard (2006) Problems and prospects in the study of physician-patient interaction: 30 years of research. Annual Review of Sociology 32: 351–374. https://doi.org/10.1146/annurev.soc.32.082905.093959

Hodges, Brian D., Ayelet Kuper and Scott Reeves (2008) Discourse analysis. British Medical Journal 337 (7669): 570–572. https://doi.org/10.1136/bmj.a879

Holden, Alexander (2019) Dentistry and oral health in online media sources. Community Dental Health 36 (3): 221–228.

Holloway, Immy and Kathleen Galvin (2017) Qual­itative Research in Nursing and Healthcare (4th edition). Chichester, UK: Wiley Blackwell.

Humphris, Gerry, John Crawford, Kirsty Hill, Angela Gilbert and Ruth Freeman (2013) UK population norms for the modified dental anxiety scale with percentile calculator: Adult dental health survey 2009 results. BMC Oral Health 13 (29): Article PMC3691614. https://doi.org/10.1186/1472-6831-13-29

Jahng, Kristina, Leslie Martin, Carol Golin and Robin DiMatteo (2005) Preferences for medical collaboration: Patient–physician congruence and patient outcomes. Patient Education and Counseling 57 (3): 308–314. https://doi.org/10.1016/j.pec.2004.08.006

Kelly, Aengus (2015) The Ceremonial (Dis)Order of the Clinic: Mapping Engagement in Dental Interactions. Unpublished doctoral dissertation, School of Linguistics, Speech and Communication Sciences University of Dublin, Ireland.

Lupton, Deborah (1992) Discourse analysis: A new methodology for understanding the ideologies of health and illness. Australian Journal of Public Health 16 (2): 145–150. https://doi.org/10.1111/j.1753-6405.1992.tb00043.x

McCrae, Niall and Edward Purssell (2016) Is it really theoretical? A review of sampling in grounded theory studies in nursing journals. Journal of Advanced Nursing 72 (10): 2284–2293. https://doi.org/10.1111/jan.12986

Mishler, Elliot G. (1984) The Discourse of Medicine: Dialectics of Medical Interviews. Norwood, NJ: Ablex.

NHS Information Centre for Health and Social Care (2009) Adult Dental Health Survey 2009 – Summary Report and Thematic Series. Online: https://digital.nhs.uk/data-and-information/publications/statistical/adult-dental-health-survey/adult-dental-health-survey-2009-summary-report-and-thematic-series

Nowak, Marta, Heather Buchanan and Koula Asimakopoulou (2018) ‘You have to treat the person, not the mouth only’: UK dentists’ perceptions of communication in patient consultations. Psychology, Health & Medicine 23 (6): 752–761. https://doi.org/10.1080/13548506.2018.1457167

O’Neill [as O’Neil], Michaela (2016) The role of hygienists and therapists. Dentistry Online, 16 September. Online: https://www.dentistry.co.uk/2016/09/16/the-role-of-dental-hygienists-and-therapists/

Pearce, Mark, Steven J. Agius, Joan E. Macfarlane and Nicholas Taylor (2015) Supporting dental registrants in difficulty. British Dental Journal 218: Article E5. https://doi.org/10.1038/sj.bdj.2015.97

Potter, Jonathan and Margaret Wetherell (1987) Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: Sage.

Roberts, Celia and Srikant Sarangi (2005) Theme-oriented discourse analysis of medical encounters. Medical Education 39 (6): 632–640. https://doi.org/10.1111/j.1365-2929.2005.02171.x

Roberts, Celia, Val Wass, Roger Jones, Srikant Sarangi and Annie Gillet (2003) A discourse analysis study of ‘good’ and ‘poor’ communication in an OSCE: A proposed new framework for teaching students. Medical Education 37 (3): 197–201. https://doi.org/10.1046/j.1365-2923.2003.01443.x

Sarangi, Srikant (2010) Reconfiguring self/identity/status/role: The case of professional role perf­orm­ance in healthcare encounters Journal of Applied Linguistics and Professional Practice 7 (1): 75–95. https://doi.org/10.1558/japl.v7i1.75

Sarnat, Haim, Pnina Arad, David Hanauer and Elana Shohami (2001) Communication strategies used during paediatric dental treatment: A pilot study. Paediatric Dentistry 23 (3): 337–341.

Smile Aider (2020) Smile Aider (Stakeholder Meaningful Involvement Engagement Aiding Dental Research). School of Dentistry, University of Leeds website. Online: https://medicinehealth.leeds.ac.uk/dir-record/research-projects/1243/smile-aider-stakeholder-meaningful-involvement-engagement-aiding-dental-research

Swenson, Sara L., Stephanie Buell, Patti Zettler, Martha White, Delaney C. Ruston and Bernard Lo (2004) Patient-centred communication: Do patients really prefer it? Journal General Internal Medicine 19 (11): 1069–1079. https://doi.org/10.1111/j.1525-1497.2004.30384.x

Talja, Sanna (1999) Analyzing qualitative inter­view data: The discourse analytic method. Library and Information Science Research 21 (4): 459–477. https://doi.org/10.1016/S0740-8188(99)00024-9

Taylor, Gary and Jane Ussher (2001) Making sense of S&M: A discourse analytic account. Sexualities 4 (3): 293–314. https://doi.org/10.1177/136346001004003002

Threlfall, Antony G., Carianne M. Hunt, Keith M. Milsom, Martin Tickle and Anthony S. Blinkhorn (2007) Exploring factors that influence general dental practitioners when providing advice to help prevent caries in children. British Dental Journal 202: Article E10. https://doi.org/10.1038/bdj.2007.143

Turner, Daniel (2020) Introducing discourse analysis for qualitative research. Quirkos, 29 September. Online: https://www.quirkos.com/blog/post/discourse-analysis-qualitative-research/

Varela-Centelles, Pablo, Pedro Diz-Iglesias, Ana Estany-Gestal, Juan Seoane-Romero, Rosendo Bugarin-Gonzalez and Juan Seoane (2016) Periodontitis awareness amongst the general public: A critical systematic review to identify gaps in knowledge. Journal of Periodontology 87 (4): 403–415. https://doi.org/10.1902/jop.2015.150458

Walker, Tom W. M., Carla Fleming, Ashwin Kerai, S. Hall, Dylan Rakhra, Jeremy P. Horwood, Andrea E. Waylen and S. J. Thomas (2018) Are dental students well-equipped to deal with difficult communication situations? British Dental Journal 224: 163–168. https://doi.org/10.1038/sj.bdj.2018.44

Waylen, Andrea E., Gregory Makoul and Y. Albeyatti (2015) Patient-clinician communication in a dental setting: A pilot study. British Dental Journal 218: 585–588. https://doi.org/10.1038/sj.bdj.2015.389

Weston, Cynthia, Terry Gandell, Jacinthe Beauchamp, Lynne McAlpine, Carol Wiseman and Cathy Beauchamp (2001) Analyzing interview data: The development of a coding system, Qualitative Sociology 24 (3): 381–400. https://doi.org/10.1023/A:1010690908200

Downloads

Published

2023-07-06

Issue

Vol. 18 No. 3 (2021)

Section

Articles

License

copyright Equinox Publishing Ltd.

How to Cite

Grossi, A. A., Paredes, D., Palaniswamy, V., Jansen, N., Picozzi, M., & Randhawa, G. (2023). ‘One size does not fit all’ in organ donation and transplantation: Targeting and tailoring communication for migrant and ethnic minority populations. Communication and Medicine, 18(3), 241-257. https://doi.org/10.1558/cam.21434