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
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
Beard J, Ireland L, Davis N, Barr J (2002) Tissue donation: what does it mean to families? Prog Transplant 12(1):42–48
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
Chiovitti R, Piran N (2003) Rigour and grounded theory research. J Adv Nurs. doi:10.1046/j.0309-2402.2003.02822.x
Corbin J, Strauss A (2015) Basics of qualitative research: techniques and procedures for developing grounded theory, 4th edn. SAGE, Thousand Oaks
DiCicco-Bloom B, Crabtree BF (2006) The qualitative research interview. Med Educ 40:314–321. doi:10.1111/j.1365-2929.2006.02418.x
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
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
Flick U (2009a) Desenho da Pesquisa Qualitativa. Artmed, Porto Alegre
Flick U (2009b) Introdução à Pesquisa Qualitativa. Artmed, Porto Alegre
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
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
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
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
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
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
Hawkins AK (2010) Biobanks: importance, implications and opportunities for genetic counselors. J Genet Couns 19:423–429. doi:10.1007/s10897-010-9305-1
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
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
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
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
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
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
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
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
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
Merrian SB (2009) Qualitative research: a guide to design and implementation. Jossey-Bass, San Francisco
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
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
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
Padoan CS, Magalhães PV (2013) Atitudes relacionadas ao consentimneto para doação de órgãos e tecidos para pesquisa no Brasil. Ciênc Saúde Coletiva 18:1189
Pandey GN, Dwivedi Y (2010) What can post-mortem studies tell us about the pathoetiology of suicide? Future Neurol 5(5):701–720
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
QSR International Pty LTD (2010) NVivo qualitative data analysis software. Melbourne, QSR International Pty Ltd
Sanner MA (2006) People’s attitudes and reactions to organ donation. Mortality 11(2):133–150. doi:10.1080/13576270600615351
Seidman I (2013) Interviewing as qualitative research. Teacher’s College Press, New York
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
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
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
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
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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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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DOI: https://doi.org/10.1007/s10561-016-9601-6