Between hospitality and the inhospitable: Critical judgments on the professional-beneficiary relationship within assisted reproductive technology

References

• Aarts, J. W. M., Huppelschoten, A. G., van Empel, I. W. H., Boivin, J., Verhaak, C. M., Kremer, J. A. M., & Nelen, W. L. (2012). How patient-centred care relates to patients’ quality of life and distress: A study in 427 women experiencing infertility. Human Reproduction, 27(2), 488–495. https://doi.org/10.1093/humrep/der386
   PubMed Web of Science ®Google Scholar
• Barbot, J. (2002). Les Malades en mouvements. La médecine et la science à l’épreuve du sida. Balland.
   Google Scholar
• Boltanski, L., & Thévenot, L. (2006). On justification. Economies of worth. Princeton University Press.
   Google Scholar
• Borghi, L., Leone, D., Poli, S., Becattini, C., Chelo, E., Costa, M., De Lauretis, L., Ferraretti, A. P., Filippini, C., Giuffrida, G., Livi, C., Luehwink, A., Palermo, R., Revelli, A., Tomasi, G., Tomei, F., & Vegni, E. (2019). Patient-centered communication, patient satisfaction, and retention in care in assisted reproductive technology visits. Journal of Assisted Reproduction and Genetics, 36(6), 1135–1142. https://doi.org/10.1007/s10815-019-01466-1
   PubMed Web of Science ®Google Scholar
• Bradley, E. H., Leone, D., Poli, S., Becattini, C., Chelo, E., Costa, M., De Lauretis, L., Ferraretti, A. P., Filippini, C., Giuffrida, G., Livi, C., Luehwink, A., Palermo, R., Revelli, A., Tomasi, G., Tomei, F., & Vegni, E. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Services Research, 42(4), 1758–1772. https://doi.org/10.1111/j.1475-6773.2006.00684.x
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Breviglieri, M. (2006). Penser l’habiter, estimer l’habitabilité. Tracés, 23, 9–14. https://hal.archives-ouvertes.fr/hal-01578031.
   Google Scholar
• Breviglieri, M. (2008). Le «corps empêché» de l’usager (mutisme, fébrilité, épuisement). Aux limites d’une politique du consentement informé dans le travail social. In J.-P. Payet, F. Giuliani, & D. Laforgue (Eds), La voix des acteurs faibles. De l’indignité à la reconnaissance (pp. 215–229). Presses Universitaires de Rennes.
   Google Scholar
• Breviglieri, M. (2009). L’insupportable. L’excès de proximité, l’atteinte à l’autonomie et le sentiment de violation du privé. In M. Breviglieri, C. Lafaye, & D. Trom (Orgs.) (Eds.), Compétences Critiques et Sens de la Justice (pp. 125–149). Éditions Economica.
   Google Scholar
• Brickley, B., Williams, L. T., Morgan, M., Ross, A., Trigger, K., & Ball, L. (2021). Putting patients first: Development of a patient advocate and general practitioner-informed model of patient-centred care. BMC Health Services Research, 21, 1–9. https://doi.org/10.1186/s12913-021-06273-y
   PubMed Web of Science ®Google Scholar
• Britten, N., & Maguire, K. (2016). Lay knowledge, social movements and the use of medicines: Personal reflections. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 20(2), 77–93. https://doi.org/10.1177/1363459315619021
   Google Scholar
• Brown, P., Morello-Frosch, R., Zavestoski, S., Senier, L., Altman, R. G., Hoover, E., McCormick, S., Mayer, B., & Adams, C. (2011). Health social movements: Advancing traditional medical sociology concepts. In B. A. Pescosolido, et al. (Eds), Handbook of the sociology of health, illness, and healing: A blueprint for the 21st century (pp. 117–137). New York: Springer.
   Google Scholar
• Brown, P., & Zavetoski, S. (2004). Social movements in health: An introduction. Sociology of Health & Illness, 26(6), 679–694. https://doi.org/10.1111/j.0141-9889.2004.00413.x
   PubMed Web of Science ®Google Scholar
• Cai, Q. F., Wan, F., Dong, X. Y., Liao, X. H., Zheng, J., Wang, R., Wang, L., Ji, L. C., & Zhang, H. W. (2014). Fertility clinicians and infertile patients in China have different preferences in fertility care. Human Reproduction, 29(4), 712–719. https://doi.org/10.1093/humrep/deu023
   PubMed Web of Science ®Google Scholar
• Castro, E. M., Van Regenmortel, T., Vanhaecht, K., Sermeus, W., & Van Hecke, A. (2016). Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Education and Counseling, 99(12), 1923–1939. https://doi.org/10.1016/j.pec.2016.07.026
   PubMed Web of Science ®Google Scholar
• Chatel, T. (2011). Ethique du ‘prendre soin’: Sollicitude, care, accompagnement. In E. Hirsch (dir.) (Ed.), Traité de bioéthique (pp. 84–94). Éditions Erès. https://shs.hal.science/halshs-00707121.
   Google Scholar
• Clarke, A. E., Shim, J. K., Mamo, L., Fosket, J. R., & Fishman, J. R. (2003). Biomedicalization: Technoscientific transformations of health, illness, and U.S. Biomedicine. American Sociological Review, 68(2), 161–194. https://doi.org/10.1177/000312240306800201
   Web of Science ®Google Scholar
• Cunningham, N., & Cunningham, T. (2013). Women’s experiences of infertility – towards a relational model of care. Journal of Clinical Nursing, 22(23-24), 3428–3437. https://doi.org/10.1111/jocn.12338
   PubMed Web of Science ®Google Scholar
• Dancet, E. A. F., D'Hooghe, T. M., Sermeus, W., van Empel, I., Strohmer, H., Wyns, C., Santa-Cruz, D., Nardo, L. G., Kovatchki, D., Vanlangenakker, L., Garcia-Velasco, J., Mulugeta, B., Nelen, W. L. D. M., & Kremer, J. A. M. (2012). Patients from across Europe have similar views on patient-centred care: An international multilingual qualitative study in infertility care. Human Reproduction, 27(6), 1702–1711. https://doi.org/10.1093/humrep/des061
   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, 26(4), 827–833. https://doi.org/10.1093/humrep/der022
   PubMed Web of Science ®Google Scholar
• Delaunay, C. (2014). Vulnerabilidades na saúde: Controvérsias públicas em torno da procriação medicamente assistida em contextos de ambivalência e incerteza. Dilemas: Revista de Estudos de Conflito e Controle Social, 7(1), 95–119.
   Google Scholar
• Delaunay, C. (2017). L’insupportable et l’incertain. Anthropologie et Santé, 15. https://doi.org/10.4000/anthropologiesante.2738
   Google Scholar
• Duthie, E. A., Cooper, A., Davis, J. B., Schoyer, K. D., Sandlow, J., Strawn, E. Y., & Flynn, K. E. (2017). A conceptual framework for patient-centered fertility treatment. Reproductive Health, 14. https://doi.org/10.1186/s12978-017-0375-5
   Web of Science ®Google Scholar
• Fleury, C. (2018). Prudence et sollicitude dans le soin. Soins, 63(824), 32–34. https://doi.org/10.1016/j.soin.2018.02.006
   PubMedGoogle Scholar
• Furstenberg, C. (2011). La clé des soins relationnels : La sollicitude en chemin au domicile. Recherche en Soins Infirmiers, 107(4), 76–82. https://doi.org/10.3917/rsi.107.0076
   Google Scholar
• Gagliardi, A. R., Nyhof, B. B., Dunn, S., Grace, S. L., Green, C., Stewart, D. E., & Wright, F. C. (2019). How is patient-centred care conceptualized in women’s health: A scoping review. BMC Women's Health, 19, 1–13. https://doi.org/10.1186/s12905-019-0852-9
   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
• Gaudillière, J.-P. (2002). Mettre les savoirs en débat? Expertise biomédicale et mobilisations associatives aux etats-unis et en France. Politix, 15(57), 103–123. https://doi.org/10.3406/polix.2002.1209
   Google Scholar
• Gilligan, C. (1995). Moral orientation and development. In V. Held (Ed.), Justice and care. Essential readings in feminist ethics (pp. 31–46). Routledge. https://doi.org/10.4324/9780429499463.
   Google Scholar
• Guérin, S. (2016). Pour une éthique concrète de la sollicitude. https://www.espaceethique.org/ressources/article/pour-une-ethique-concrete-de-la-sollicitude.
   Google Scholar
• Hochschild, A. (1983). The managed heart: Commercialisation of human feelings. University of California Press.
   Google Scholar
• Honneth, A. (2004). Recognition and justice. Acta Sociologica, 47(4), 351–364. https://doi.org/10.1177/0001699304048668
   Web of Science ®Google Scholar
• Huele, E. H., Kool, E. M., Bos, A. M. E., Fauser, B. C. J. M., & Bredenoord, A. L. (2020). The ethics of embryo donation: What are the moral similarities and differences of surplus embryo donation and double gamete donation? Human Reproduction, 35(10), 2171–2178. https://doi.org/10.1093/humrep/deaa166
   PubMed Web of Science ®Google Scholar
• Kitson, A., Marshall, A., Bassett, K., & Zeitz, K. (2013). What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing, 69(1), 4–15. https://doi.org/10.1111/j.1365-2648.2012.06064.x
   PubMed Web of Science ®Google Scholar
• Laugier, S. (2011). Care et perception: L’éthique comme attention au particulier. In P. Paperman & S. Laugier (Eds), Le souci des autres: Éthique et politique du care (pp. 359–393). Éditions de l’EHESS. https://doi.org/10.4000/books.editionsehess.11728.
   Google Scholar
• Livet, P., & Thévenot, L. (1993). Modes d’action collective et construction éthique. Les émotions dans l’évaluation. In J.-P. Dupuy & P. Livet (Eds), Les limites de La rationalité (pp. 412–439). La Découverte.
   Google Scholar
• Loffeier, I. (2015). La «norme de sollicitude» jusqu’à l’oubli de soi dans la prise en charge des résidents de maison de retraite. SociologieS, Théories et Recherches, https://doi.org/10.4000/sociologies.5002
   Google Scholar
• Mackenzie, S. (2022). Social movement organizing and the politics of emotion from HIV to COVID-19. Sociology Compass, 16(5), e12979. https://doi.org/10.1111/soc4.12979
   PubMed Web of Science ®Google Scholar
• Maguire, K., & Britten, N. (2018). ‘You're there because you are unprofessional’: Patient and public involvement as liminal knowledge spaces. Sociology of Health & Illness, 40(3), 463–477. https://doi.org/10.1111/1467-9566.12655
   PubMed Web of Science ®Google Scholar
• Martins, A., & Delaunay, C. (2016). O reconhecimento da vontade do outro por via da proximidade: Subsídios para uma análise de quotidianos profissionais em cuidados paliativos. Terceiro Milênio: Revista Crítica de Sociologia e Política, 6(1), 35–57.
   Google Scholar
• Maurer, M., Dardess, P., & Rouse, T. B. (2019). Patient and family engagement in the United States: A social movement from patient to advocate to partner. In M. P. Pomey, J. L. Denis, & V. Dumez (Eds), Patient engagement. Organizational behaviour in healthcare (pp. 91–128). Palgrave Macmillan. https://doi.org/10.1007/978-3-030-14101-1_5
   Google Scholar
• McCormarck, A. L., McCormack, L. A., Treiman, K., Rupert, D., Williams-Piehota, P., Nadler, E., Arora, N. K., Lawrence, W., & Street, R. L. (2011). Measuring patient-centered communication in cancer care: A literature review and the development of a systematic approach. Social Science & Medicine, 72(7), 1085–1095. https://doi.org/10.1016/j.socscimed.2011.01.020
   PubMed Web of Science ®Google Scholar
• Medina-Artom, T. R., & Adashi, E. Y. (2020). Patient-centered care in Israeli IVF units: Divergent perceptions of patients and providers. Israel Journal of Health Policy Research, 9. https://doi.org/10.1186/s13584-020-00395-0
   PubMed Web of Science ®Google Scholar
• Mourad, S. M., Curtis, C., Gudex, G., Merrilees, M., Peek, J., & Sadler, L. (2019). Measuring patient-centredness in publicly funded fertility care: A New Zealand validation and international comparison of the patient-centred questionnaire-infertility. Australian and New Zealand Journal of Obstetrics and Gynaecology, 59(2), 265–271. https://doi.org/10.1111/ajo.12869
   PubMed Web of Science ®Google Scholar
• Paperman, P. (2010). Éthique du care. Gérontologie et Société, 133(2), 51–61. https://doi.org/10.3917/gs.133.0051.
   Google Scholar
• Patrizio, P., Albertini, D. F., Gleicher, N., & Caplan, A. (2022). The changing world of IVF: The pros and cons of new business models offering assisted reproductive technologies. Journal of Assisted Reproduction and Genetics, 39(2), 305–313. https://doi.org/10.1007/s10815-022-02399-y
   PubMed Web of Science ®Google Scholar
• Pattaroni, L. (2011). Le care est-il institutionnalisable? Quand la «politique du care» émousse son éthique. In P. Paperman & S. Laugier (Eds.), Le souci des autres: Éthique et politique du care (pp. 209–233). Éditions de l’EHESS. https://doi.org/10.4000/books.editionsehess.11683.
   Google Scholar
• Pelzang, R. (2010). Time to learn: Understanding patient-centred care. British Journal of Nursing, 19(14), 912–917. https://doi.org/10.12968/bjon.2010.19.14.49050
   Google Scholar
• Pedro, J., Canavarro, M. C., Boivin, J., & Gameiro, S. (2013). Positive experiences of patient-centred care are associated with intentions to comply with fertility treatment: Findings from the validation of the Portuguese version of the PCQ-infertility tool. Human Reproduction, 28(9), 2462–2472. https://doi.org/10.1093/humrep/det259
   PubMed Web of Science ®Google Scholar
• Poli, S., Borghi, L., De Stasio, M., Leone, D., & Vegni, E. (2021). Laughs and jokes in assisted reproductive technologies: Quantitative and qualitative analysis of video-recorded doctor-couple visits. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.648333
   PubMed Web of Science ®Google Scholar
• Rabeharisoa, V., & Callon, M. (2002). The involvement of patients' associations in research. International Social Science Journal, 54(171), 57–63. https://doi.org/10.1111/1468-2451.00359
   Google Scholar
• Ricoeur, P. (1990). Soi-même comme un autre. Seuil.
   Google Scholar
• Roberts, E. F. S. (2012). God’s laboratory: Assisted reproduction in the Andes. University of California Press.
   Google Scholar
• Samorinha, C., & Silva, S. (2016). A patient-centred approach to embryo donation for research. Israel Journal of Health Policy Research, 5(44). https://doi.org/10.1186/s13584-016-0098-z
   PubMedGoogle Scholar
• Sastre, M. T. M., Sorum, P. C., & Mullet, E. (2021). French people’s positions regarding same-Sex couples’ and singles’ rights to assisted reproductive technology and adoption. Journal of Child and Family Studies, 30(5), 1381–1391. https://doi.org/10.1007/s10826-021-01898-3
   Web of Science ®Google Scholar
• Scholl, I., Zill, J. M., Härter, M., & Dirmaier, J. (2014). An integrative model of patient-centeredness - a systematic review and concept analysis. PLoS ONE, 9(9), 1–9. https://doi.org/10.1371/journal.pone.0107828
   Web of Science ®Google Scholar
• Shandley, L. M., Hipp, H. S., Anderson-Bialis, J., Anderson-Bialis, D., Boulet, S. L., McKenzie, L. J., & Kawwass, J. F. (2020). Patient-centered care: Factors associated with reporting a positive experience at United States fertility clinics. Fertility and Sterility, 113(4), 797–810. https://doi.org/10.1016/j.fertnstert.2019.12.040
   PubMed Web of Science ®Google Scholar
• Smith, N. C. (2020). How can stigma contribute to our understanding of the formation and mobilization of collective identities in health social movements? Sociology Compass, 14(6), e12796. https://doi.org/10.1111/soc4.12796
   Web of Science ®Google Scholar
• Stavo-Debauge, J. (2014). L’idéal participatif ébranlé par l’accueil de l’étranger. L’hospitalité et l’appartenance en tension dans une communauté militante. Participations, 9(2), 37–70. https://doi.org/10.3917/parti.009.0037
   Google Scholar
• Stavo-Debauge, J. (2018). Qu’est-ce que l’hospitalité. Recevoir l’étranger à la communauté. Liber.
   Google Scholar
• Thévenot, L. (2006). L’action au pluriel: Sociologie des régimes d’engagement. Éditions La Découverte.
   Google Scholar
• Thévenot, L. (2007). The plurality of cognitive formats and engagements. European Journal of Social Theory, 10(3), 409–427. https://doi.org/10.1177/1368431007080703
   Google Scholar
• Thévenot, L. (2009). Postscript to the special issue: Governing life by standards. Social Studies of Science, 39(5), 793–813. https://doi.org/10.1177/0306312709338767
   Web of Science ®Google Scholar
• Thévenot, L. (2014). Voicing concern and difference: From public spaces to commonplaces. European Journal of Cultural and Political Sociology, 1(1), 7–34. https://doi.org/10.1080/23254823.2014.905749
   Google Scholar
• Thévenot, L. (2019). What engages ? The sociology of justifications, conventions, and engagements, meeting norms. Revue des Droits de L’homme L’homme, 16. https://doi.org/10.4000/revdh.7114
   Google Scholar
• Thompson, A. G. H. (2007). The meaning of patient involvement and participation in health care consultations: A taxonomy. Social Science & Medicine, 64(6), 1297–1310. https://doi.org/10.1016/j.socscimed.2006.11.002
   PubMed Web of Science ®Google Scholar
• Thompson, C. (2005). Making parents. The ontological choreography of reproductive technologies. MIT Press.
   Google Scholar
• van Empel, I. W. H., Aarts, J. W. M., Cohlen, B. J., Huppelschoten, D. A., Laven, J. S. E., Nelen, W. L. D. M., & Kremer, J. A. M. (2010). Measuring patient-centredness, the neglected outcome in fertility care: A random multicentre validation study. Human Reproduction, 25(10), 2516–2526. https://doi.org/10.1093/humrep/deq219
   PubMed Web of Science ®Google Scholar
• Verkerk, E. W., Rake, E. A., Braat, D. D. M., Nelen, W. L. D. M., Aarts, J. W. M., & Kremer, J. A. M. (2022). The tell me tool: The development and feasibility of a tool for person-centred infertility care. Health Expectations, 25(3), 1081–1093. https://doi.org/10.1111/hex.13455
   PubMed Web of Science ®Google Scholar
• Webair, H. H., Ismail, T. A. T., Ismail, S. B., & Khaffaji, A. J. (2021). Patient-centred infertility care among arab women experiencing infertility: A qualitative study. BMJ Open, 11(6), e044300. https://doi.org/10.1136/bmjopen-2020-044300
   PubMed Web of Science ®Google Scholar
• Yerkes, M. A., Sani, G. M. D., & Solera, C. (2018). Attitudes toward parenthood, partnership, and social rights for diverse families: Evidence from a pilot study in five countries. Journal of Homosexuality, 65(1), 80–99. https://doi.org/10.1080/00918369.2017.1310507
   PubMed Web of Science ®Google Scholar
• Zeh, S. (2019). Assessing the relevance and implementation of patient-centredness from the patients’ perspective in Germany: Results of a Delphi study. BMJ Open, 9, e031741. https://doi.org/10.1136/bmjopen-2019-031741
   PubMedGoogle Scholar