Donor-centred care: the facilitating and constraining factors experienced by gamete donors in a public bank

References

• Aarts, J. W. M., Faber, M. J., Van Empel, I. W. H., Scheenjes, E., Nelen, W. L. D. M., & Kremer, J. A. M. (2011). Professionals’ perceptions of their patients’ experiences with fertility care. Human Reproduction (Oxford, England), 26(5), 1119–1127. https://doi.org/10.1093/humrep/der054
   PubMed Web of Science ®Google Scholar
• Alien, T. D., Freeman, D. M., Reizenstein, R. C., & Rentz, J. O. (1995). Just another transition? Examining survivors’ attitudes over time. Academy of Management Proceedings, 1995(1), 78–82. https://doi.org/10.5465/ambpp.1995.17536295
   Google Scholar
• Applegarth, L. D., & Kingsberg, S. A. (2006). The donor as patient: assessment and support. In L. Covington, SN Burns (Ed.), Infertility counselling: A comprehensive handbook for clinicians (pp. 339–355). Cambridge University Press.
   Google Scholar
• Baía, I., de Freitas, C., & Silva, S. (2021). Priority of access to fertility treatments based on sexual orientation and marital status: The views of gamete donors and recipients. Sexuality Research and Social Policy, 18(2), 368–376. https://doi.org/10.1007/s13178-020-00464-8
   Web of Science ®Google Scholar
• Baía, I., De Freitas, C., Samorinha, C., Provoost, V., & Silva, S. (2019). Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research. BMC Medical Ethics, 20(1), 90. https://doi.org/10.1186/s12910-019-0430-6
   PubMed Web of Science ®Google Scholar
• Blakemore, J. K., Voigt, P., Schiffman, M. R., Lee, S., Besser, A. G., & Fino, M. E. (2019). Experiences and psychological outcomes of the oocyte donor: A survey of donors post-donation from one center. Journal of Assisted Reproduction and Genetics, 36(10), 1999–2005. https://doi.org/10.1007/s10815-019-01527-5
   PubMed Web of Science ®Google Scholar
• Bosia, D., Marino, D., & Peretti, G. (2016). Health facilities humanisation: Design guidelines supported by statistical evidence. Annali Dell'Istituto Superiore di Sanita, 52(1), 33–39. https://doi.org/10.4415/ANN_16_01_08
   PubMed Web of Science ®Google Scholar
• Bracewell-Milnes, T., Saso, S., Bora, S., Ismail, A. M., Al-Memar, M., Hamed, A. H., Abdalla, H., & Thum, M.-Y. (2016). Investigating psychosocial attitudes, motivations and experiences of oocyte donors, recipients and egg sharers: A systematic review. Human Reproduction Update, 22(4), 450–465. https://doi.org/10.1093/humupd/dmw006
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Byrd, L. M., Sidebotham, M., & Lieberman, B. (2002). Egg donation-the donor's view: An aid to future recruitment. Human Fertility (Cambridge, England), 5(4), 175–182. https://doi.org/10.1080/1464727022000199082
   PubMedGoogle Scholar
• Coulter, A., Locock, L., Ziebland, S., & Calabrese, J. (2014). Collecting data on patient experience is not enough: They must be used to improve care. BMJ (Clinical Research Ed.), 348, g2225. https://doi.org/10.1136/bmj.g2225
   PubMed Web of Science ®Google Scholar
• Daar, J., Collins, L., Davis, J., Francis, L., Gates, E., Ginsburg, E., Gitlin, S., Klipstein, S., McCullough, L., Paulson, R., Reindollar, R., Ryan, G., Sauer, M., Tipton, S., Westphal, L., & Zweifel, J. (2019). Interests, obligations, and rights in gamete and embryo donation: An ethics committee opinion. Fertility and Sterility, 111(4), 664–670. https://doi.org/10.1016/j.fertnstert.2019.01.018
   PubMed Web of Science ®Google Scholar
• Dancet, E. A. F., Van Empel, I. W. H., Rober, P., Nelen, W. L. D. M., Kremer, J. A. M., & D'Hooghe, T. M. (2011). Patient-centred infertility care: A qualitative study to listen to the patient's voice. Human Reproduction (Oxford, England), 26(4), 827–833. https://doi.org/10.1093/humrep/der022
   PubMed Web of Science ®Google Scholar
• de Freitas, C. (2017). Public and patient participation in health policy, care and research. Porto Biomedical Journal, 2(2), 31–32. https://doi.org/10.1016/j.pbj.2017.01.001
   PubMedGoogle Scholar
• De Geyter, C., Calhaz-Jorge, C., Kupka, M. S., Wyns, C., Mocanu, E., Motrenko, T., Scaravelli, G., Smeenk, J., Vidakovic, S., Goossens, V., Gliozheni, O., Hambartsoumian, E., Strohmer, H., Petrovskaya, E., Tishkevich, O., Bogaerts, K., Wyns, C., Balic, D., Sibincic, S., … Gryshchenko, M. (2020). ART in Europe, 2015: Results generated from European registries by ESHRE. Human Reproduction Open, 2020(1), hoz038. https://doi.org/10.1093/hropen/hoz038
   PubMedGoogle Scholar
• Gameiro, S., Boivin, J., Dancet, E., De Klerk, C., Emery, M., Lewis-Jones, C., Thorn, P., Van Den Broeck, U., Venetis, C., Verhaak, C. M., Wischmann, T., & Vermeulen, N. (2015). ESHRE guideline: Routine psychosocial care in infertility and medically assisted reproduction-a guide for fertility staff. Human Reproduction (Oxford, England), 30(11), 2476–2485. https://doi.org/10.1093/humrep/dev177
   PubMed Web of Science ®Google Scholar
• Gameiro, S., Canavarro, M. C., & Boivin, J. (2013). Patient centred care in infertility health care: Direct and indirect associations with wellbeing during treatment. Patient Education and Counseling, 93(3), 646–654. https://doi.org/10.1016/j.pec.2013.08.015
   PubMed Web of Science ®Google Scholar
• Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough?: An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903
   Web of Science ®Google Scholar
• Hamilton, M. (2010). Sperm donation in the United Kingdom in 2010. Human Fertility (Cambridge, England), 13(4), 257–262. https://doi.org/10.3109/14647273.2010.518658
   PubMed Web of Science ®Google Scholar
• Hogan, R. G., Hammarberg, K., Wang, A. Y., & Sullivan, E. A. (2021). Battery hens’ or ‘nuggets of gold’: A qualitative study on the barriers and enablers for altruistic egg donation. Human Fertility (Cambridge, England), Jan 15, 1–15. https://doi.org/10.1080/14647273.2021.1873430
   Google Scholar
• Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. BMJ, 323(7322), 1192. https://doi.org/10.1136/bmj.323.7322.1192
   Google Scholar
• International Federation of Fertility Societies’ Surveillance (IFFS). (2019). Global trends in reproductive policy and practice. Global Reproductive Health, 4(1), e29. https://doi.org/10.1097/GRH.0000000000000029
   Google Scholar
• Jordan, C., Belar, C. D., & Williams, R. S. (2002). Anonymous oocyte donation: A follow-up analysis of donors’ experiences. Fertility and Sterility, 78, S29. https://doi.org/10.1016/S0015-0282(02)03456-8
   PubMed Web of Science ®Google Scholar
• Kaba, R., & Sooriakumaran, P. (2007). The evolution of the doctor-patient relationship. International Journal of Surgery (London, England), 5(1), 57–65. https://doi.org/10.1016/j.ijsu.2006.01.005
   PubMedGoogle Scholar
• Kalfoglou, A. L., & Gittelsohn, J. (2000). A qualitative follow-up study of women's experiences with oocyte donation. Human Reproduction (Oxford, England), 15(4), 798–805. https://doi.org/10.1093/humrep/15.4.798
   PubMed Web of Science ®Google Scholar
• Kenney, N. J., & McGowan, M. L. (2010). Looking back: Egg donors' retrospective evaluations of their motivations, expectations, and experiences during their first donation cycle. Fertility and Sterility, 93(2), 455–466. https://doi.org/10.1016/j.fertnstert.2008.09.081
   PubMed Web of Science ®Google Scholar
• Kreindler, S. A. (2015). The politics of patient-centred care. Health Expectations, 18(5), 1139–1150. https://doi.org/10.1111/hex.12087
   PubMed Web of Science ®Google Scholar
• Le Lannou, D. (2013). Quelle stratègie pour amèliorer le recrutement des donneurs de gamètes? Gynécologie Obstétrique & Fertilité, 41(12), 711–714. https://doi.org/10.1016/j.gyobfe.2013.10.005
   PubMedGoogle Scholar
• Leino-Kilpi, H., Välimäki, M., Dassen, T., Gasull, M., Lemonidou, C., Scott, A., & Arndt, M. (2001). Privacy: A review of the literature. International Journal of Nursing Studies, 38(6), 663–671. https://doi.org/10.1016/S0020-7489(00)00111-5
   PubMed Web of Science ®Google Scholar
• Martin, G. P., & Finn, R. (2011). Patients as team members: Opportunities, challenges and paradoxes of including patients in multi-professional healthcare teams. Sociology of Health & Illness, 33(7), 1050–1065. https://doi.org/10.1111/j.1467-9566.2011.01356.x
   PubMed Web of Science ®Google Scholar
• Mohr, S. (2014). Beyond motivation: On what it means to be a sperm donor in Denmark. Anthropology & Medicine, 21(2), 162–173. https://doi.org/10.1080/13648470.2014.914806
   PubMed Web of Science ®Google Scholar
• Moura, A., Silva, S., de Freitas, C., Abreu, L., Baía, I., & Samorinha, C. (2019). Concerns with educating the public about donating and receiving gametes. The European Journal of Contraception & Reproductive Health Care, 24(6), 420–421. https://doi.org/10.1080/13625187.2019.1662392
   PubMed Web of Science ®Google Scholar
• Paiva, D., Abreu, L., Azevedo, A., & Silva, S. (2019). Patient-centered communication in type 2 diabetes: The facilitating and constraining factors in clinical encounters. Health Services Research, 54(3), 623–635. https://doi.org/10.1111/1475-6773.13126
   PubMed Web of Science ®Google Scholar
• Purewal, S., & van den Akker, O. B. A. (2009). Systematic review of oocyte donation: Investigating attitudes, motivations and experiences. Human Reproduction Update, 15(5), 499–515. https://doi.org/10.1093/humupd/dmp018
   PubMed Web of Science ®Google Scholar
• Richards, T., Coulter, A., & Wicks, P. (2015). Time to deliver patient centred care. BMJ, 350, h530. https://doi.org/10.1136/bmj.h530
   PubMed Web of Science ®Google Scholar
• Samorinha, C., De Freitas, C., Baía, I., Machado, H., Vale-Fernandes, E., & Silva, S. (2020). Payment to gamete donors: Equality, gender equity, or solidarity? Journal of Assisted Reproduction and Genetics, 37(1), 133–140. https://doi.org/10.1007/s10815-019-01625-4
   PubMed Web of Science ®Google Scholar
• Söderström-Anttila, V. (1995). Follow-up study of Finnish volunteer oocyte donors concerning their attitudes to oocyte donation. Human Reproduction (Oxford, England), 10(11), 3073–3076. https://doi.org/10.1093/oxfordjournals.humrep.a135852
   PubMed Web of Science ®Google Scholar
• Svanberg, A., Lampic, C., Gejerwall, A. L., Gudmundsson, J., Karlström, P. O., Solensten, N. G., & Sydsjö, G. (2013). Gamete donors' satisfaction; gender differences and similarities among oocyte and sperm donors in a national sample. Acta Obstetricia et Gynecologica Scandinavica, 92(9), 1049–1056. https://doi.org/10.1111/aogs.12156
   PubMed Web of Science ®Google Scholar
• Thorn, P., & Wischmann, T. (2009). German guidelines for psychosocial counselling in the area of gamete donation. Human Fertility (Cambridge, England), 12(2), 73–80. https://doi.org/10.1080/14647270802712728
   PubMed Web of Science ®Google Scholar
• Van den Broeck, U., Vandermeeren, M., Vanderschueren, D., Enzlin, P., Demyttenaere, K., & D'Hooghe, T. (2013). A systematic review of sperm donors: Demographic characteristics, attitudes, motives and experiences of the process of sperm donation. Human Reproduction Update, 19(1), 37–51. https://doi.org/10.1093/humupd/dms039
   PubMed Web of Science ®Google Scholar
• van Empel, I. W., Nelen, W. L., Hermens, R. P., & Kremer, J. A. (2008). Coming soon to your clinic: High-quality ART. Human Reproduction (Oxford, England), 23(6), 1242–1245. https://doi.org/10.1093/humrep/den094
   PubMed Web of Science ®Google Scholar
• Williams, R. A., & Machin, L. L. (2018). Rethinking gamete donor care: A satisfaction survey of egg and sperm donors in the UK. PLoS One, 13(7), e0199971. https://doi.org/10.1371/journal.pone.0199971
   PubMed Web of Science ®Google Scholar
• World Health Organization. (2015). WHO global strategy on integrated people-centred health services 2016–2026 - Placing people and communities at the centre of health services. Draft for Consultation. http://apps.who.int/iris/bitstream/10665/180984/1/. http://www.who.int/servicedeliverysafety/areas/people-centred-care/global-strategy/en/
   Google Scholar
• Yee, S., Hitkari, J. A., & Greenblatt, E. M. (2007). A follow-up study of women who donated oocytes to known recipient couples for altruistic reasons. Human Reproduction (Oxford, England), 22(7), 2040–2050. https://doi.org/10.1093/humrep/dem103
   PubMed Web of Science ®Google Scholar
• Ziebland, S., Locock, L., Fitzpatrick, R., Stokes, T., Robert, G., O’Flynn, N., Bennert, K., Ryan, S., Thomas, V., & Martin, A. (2014). Informing the development of NICE (National Institute for Health and Care Excellence) quality standards through secondary analysis of qualitative narrative interviews on patients’ experiences. Health Services and Delivery Research, 2(45), 1–206. https://doi.org/10.3310/hsdr02450
   Google Scholar