“Why throw away something useful?”: Attitudes and opinions of people treated for bipolar disorder and their relatives on organ and tissue donation

Abstract

In regard to mental illness, brain donation is essential for the biological investigation of central pathology. Nevertheless, little is known about the thoughts of people with mental disorders on tissue donation for research. Here, our objective was to understand the attitudes and opinions of people treated for bipolar disorder and their relatives regarding donation in general, and particularly donation for research. This is a qualitative study that used in-depth interviews to determine the thoughts of participants regarding tissue donation for research. Theoretical sampling was used as a recruitment method. Grounded theory was used as a framework for content analyses of the interviews. A semi-structured interview guide was applied with the topics: donation in general; donation for research; mental health and body organs; opinion regarding donation; feelings aroused by the topic. Although all participants were aware of organ donation for transplant, they were surprised that tissue could be donated for research. Nevertheless, once they understood the concept they were usually in favor of the idea. Although participants demonstrated a general lack of knowledge on donation for research, they were willing to learn more and viewed it as a good thing, with altruistic reasons often cited as a motive for donation. We speculate that bridging this knowledge gap may be a fundamental step towards a more ethical postmortem tissue donation process.

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References

  1. Anker AE, Feeley TH (2011) Asking the difficult questions: message strategies used by organ procurement coordinators in requesting familial consent to organ donation. J Health Commun 16(6):643–659. doi:10.1080/10810730.2011.551999

    Article  PubMed  Google Scholar 

  2. Beard J, Ireland L, Davis N, Barr J (2002) Tissue donation: what does it mean to families? Prog Transplant 12(1):42–48

    Article  PubMed  Google Scholar 

  3. Boyes M, Ward P (2003) Brain donation for schizophrenia research: gift, consent, and meaning. J Med Ethics 29(3):165–168. doi:10.1136/jme.29.3.165

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  4. Chiovitti R, Piran N (2003) Rigour and grounded theory research. J Adv Nurs. doi:10.1046/j.0309-2402.2003.02822.x

    PubMed  Google Scholar 

  5. Corbin J, Strauss A (2015) Basics of qualitative research: techniques and procedures for developing grounded theory, 4th edn. SAGE, Thousand Oaks

    Google Scholar 

  6. DiCicco-Bloom B, Crabtree BF (2006) The qualitative research interview. Med Educ 40:314–321. doi:10.1111/j.1365-2929.2006.02418.x

    Article  PubMed  Google Scholar 

  7. Eatough V, Shaw K, Lees A (2012) Banking on brains: insights of brain donor relatives and friends from an experiential perspective. Psychology and Health 27:1271–1290. doi:10.1080/08870446.2012.669480

    Article  PubMed  Google Scholar 

  8. Fassinger RE (2005) Paradigms, praxis, problems, and promise: grounded theory in counseling psychology research. J Couns Psychol 52(2):156–166. doi:10.1037/0022-0167.52.2.156

    Article  Google Scholar 

  9. Flick U (2009a) Desenho da Pesquisa Qualitativa. Artmed, Porto Alegre

    Google Scholar 

  10. Flick U (2009b) Introdução à Pesquisa Qualitativa. Artmed, Porto Alegre

    Google Scholar 

  11. Garrick T, Howell S, Terwee P, Redenbach J, Blake H, Harper C (2006) Brain donation for research: who donates and why? J Clin Neurosci 13(5):524–528. doi:10.1016/j.jocn.2005.06.014

    CAS  Article  PubMed  Google Scholar 

  12. Garrick T, Sundqvist N, Dobbins T, Azizi L, Harper C (2009) Factors that influence decisions by families to donate brain tissue for medical research. Cell Tissue Bank 10(2009):309–315. doi:10.1007/s10561-009-9136-1

    Article  PubMed  Google Scholar 

  13. Glaw XM, Garrick TM, Terwee PJ, Patching JR, Blake H, Harper C (2009) Brain donation: who and why? Cell Tissue Bank 10:241–246. doi:10.1007/s10561-009-9121-8

    Article  PubMed  Google Scholar 

  14. Gomes FA, Almeida KM, Magalhães PV, Caetano SC, Kauer-Sant’Anna M, Lafer B, Kapczinski F (2013) Cardiovascular risk factors in outpatients with bipolar disorder: a report from the Brazilian Research Network in Bipolar Disorder. Rev Bras Psiquiatr 35(2):126–130. doi:10.1590/1516-4446-2011-0768

    Article  PubMed  Google Scholar 

  15. Harris C, Kiger A, Counsell C (2013) Attitudes to brain donation for Parkinson’s research and how to ask: a qualitative study with suggested guidelines for practice. J Adv Nurs 69:1096–1108. doi:10.1111/j.1365-2648.2012.06099.x

    Article  PubMed  Google Scholar 

  16. Harrison PJ (2011) Using our brains: the fidings, flaws, and future of postmortem studies of psychiatry. Biol Psychiat 69(2):102–103. doi:10.1016/j.biopsych.2010.09.008

    Article  PubMed  Google Scholar 

  17. Hawkins AK (2010) Biobanks: importance, implications and opportunities for genetic counselors. J Genet Couns 19:423–429. doi:10.1007/s10897-010-9305-1

    Article  PubMed  Google Scholar 

  18. Hayward C, Madill A (2003) The meanings of organ donation: muslims of Pakistani origin and white English nationals living in North England. Soc Sci Med 57(3):389–401

    Article  PubMed  Google Scholar 

  19. Hoeyer K (2008) The ethics of research biobanking: a critical review of the literature. Biotechnol Genet Eng 25:429–452. doi:10.5661/bger-25-429

    Article  Google Scholar 

  20. Hoeyer K, Olofsson BO, Mjörndal T, Lynöe N (2004) Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 32:224–229. doi:10.1080/14034940310019506

    Article  PubMed  Google Scholar 

  21. Irving MJ et al (2012) Community attitudes to deceased organ donation: a focus group study. Transplantation 93(10):1064–1069. doi:10.1097/TP.0b013e31824db997

    Article  PubMed  Google Scholar 

  22. Kesselring A, Kainz M, Kiss A (2007) Traumatic memories of relatives regarding brain death, request for organ donation and interactions with professionals in the ICU. Am J Transplant 7(1):211–217. doi:10.1111/j.1600-6143.2006.01594.x

    CAS  Article  PubMed  Google Scholar 

  23. Khan N, Masood Z, Tufail N, Shoukat H, Ashraf KT (2011) Knowledge and attitude of people towards organ donation. http://jumdc.tuf.edu.pk/articles/volume-2/no-2/JUMDC-4.pdf. Accessed 14 Apr 2015

  24. Konradi C, Sillivan SE, Clay HB (2012) Mitochondria, oligodendrocytes and inflammation in bipolar disorder: evidence from transcriptome studies points to intriguing parallels with multiple sclerosis. Neurobiol Dis 45(1):37–47. doi:10.1016/j.nbd.2011.01.025

    CAS  Article  PubMed  Google Scholar 

  25. Kuhta T, Zadikoff C, Simuni T, Martel A, Williams K, Videnovic A (2011) Brain donation: what do patients with movement disorders know and how do they feel about it? Parkinsonism Relat D 17(3):204–207. doi:10.1016/j.parkreldis.2010.12.009

    Article  Google Scholar 

  26. McGhee G, Marland GR, Atkinson J (2007) Grounded theory research: literature reviewing and reflexivity. J Adv Nurs 60:334–342. doi:10.1111/j.1365-2648.2007.04436.x

    Article  PubMed  Google Scholar 

  27. Merrian SB (2009) Qualitative research: a guide to design and implementation. Jossey-Bass, San Francisco

    Google Scholar 

  28. Millar T et al (2007) Tissue and organ donation for research in forensic pathology: the MRC Sudden Death Brain and Tissue Bank. J Pathol 213(4):369–375. doi:10.1002/path.2247

    CAS  Article  PubMed  Google Scholar 

  29. Ministério da Saúde (2015) Ministério da saúde, Sistema Nacional de Transplantes: dúvidas mais frequentes. http://dtr2001.saude.gov.br/sas/dsra/duvidas. Accessed 10 Apr 2015

  30. Nayar S (2012) Grounded theory: a research methodology for occupational science. J Occup Sci 19(January 2015): 76–82. doi:10.1080/14427591.2011.581626

  31. Padoan CS, Magalhães PV (2013) Atitudes relacionadas ao consentimneto para doação de órgãos e tecidos para pesquisa no Brasil. Ciênc Saúde Coletiva 18:1189

    Article  Google Scholar 

  32. Pandey GN, Dwivedi Y (2010) What can post-mortem studies tell us about the pathoetiology of suicide? Future Neurol 5(5):701–720

    Article  PubMed  PubMed Central  Google Scholar 

  33. Pham H, Spigner C (2004) Knowledge and opinions about organ donation and transplantation among Vietnamese Americans in Seattle, Washington: a pilot study. Clin Transplant 18(6):707–715. doi:10.1111/j.1399-0012.2004.00284.x

    Article  PubMed  Google Scholar 

  34. QSR International Pty LTD (2010) NVivo qualitative data analysis software. Melbourne, QSR International Pty Ltd

    Google Scholar 

  35. Sanner MA (2006) People’s attitudes and reactions to organ donation. Mortality 11(2):133–150. doi:10.1080/13576270600615351

    Article  Google Scholar 

  36. Seidman I (2013) Interviewing as qualitative research. Teacher’s College Press, New York

    Google Scholar 

  37. Sheedy D, Garrick T, Dedova I, Hunt C, Miller R, Sundqvist N, Harper C (2008) An Australian Brain Bank: a critical investment with a high return! Cell Tissue Bank 9:205–216. doi:10.1007/s10561-008-9076-1

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  38. Taylor LA, McMullen P (2008) Living kidney organ donation: experiences of spousal support of donors. J Clin Nurs 17(2):232–241. doi:10.1111/j.1365-2702.2007.02016.x

    Article  PubMed  Google Scholar 

  39. Traino HM, Siminoff LA (2013) Attitudes and acceptance of first person authorization: a national comparison of donor and nondonor families. J Trauma Acute Care Surg 74(1):294–300. doi:10.1097/TA.0b013e318270dafc

    Article  PubMed  PubMed Central  Google Scholar 

  40. Womack C, Jack AL (2003) Family attitudes to research using samples taken at coroner’s postmortem examinations: review of records. BMJ 327:781–782. doi:10.1136/bmj.327.7418.781

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

“This work was supported by CAPES and FIPE-HCPA”. Prof. Kapczinski has received Grants/research support from Astra-Zeneca, Eli Lilly, Janssen-Cilag, Servier, CNPq, CAPES, NARSAD and Stanley Medical Research Institute; has been a member of the board of speakers for Astra-Zeneca, Eli Lilly, Janssen and Servier; and has served as a consultant for Servier.

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Correspondence to Carolina S. Padoan.

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Padoan, C.S., Garcia, L.F., Rodrigues, A.A. et al. “Why throw away something useful?”: Attitudes and opinions of people treated for bipolar disorder and their relatives on organ and tissue donation. Cell Tissue Bank 18, 105–117 (2017). https://doi.org/10.1007/s10561-016-9601-6

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Keywords

  • Tissue donation
  • Qualitative research
  • Attitudes
  • Mental disorders
  • Bipolar disorder