IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v139y2015icp36-43.html
   My bibliography  Save this article

Motivations of women with sickle cell disease for asking their partners to undergo genetic testing

Author

Listed:
  • Ross, Paula Thompson

Abstract

Women with sickle cell disease (SCD) now survive well into adulthood, thus knowledge about their reproductive decision-making is becoming increasingly important to both social and medical audiences. Through in-depth interviews with 28 adult women with SCD, I explored their motivations for asking their partners to undergo prospective genetic testing. The analysis revealed several sources of motivation including participants' concerns about the potential physical suffering of future children; potential feelings of guilt and stigma; determining whether to enter or remain in an intimate relationship; and finally, their mother's lack of insisting on their father's undergo testing. These findings offer insight into the pre-conception reproductive decision-making behavior of women with SCD.

Suggested Citation

  • Ross, Paula Thompson, 2015. "Motivations of women with sickle cell disease for asking their partners to undergo genetic testing," Social Science & Medicine, Elsevier, vol. 139(C), pages 36-43.
    • Handle: RePEc:eee:socmed:v:139:y:2015:i:c:p:36-43
    DOI: 10.1016/j.socscimed.2015.06.029
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953615300071
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2015.06.029?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Atkin, Karl & Ahmad, Waqar I. U. & Anionwu, Elizabeth N., 1998. "Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals," Social Science & Medicine, Elsevier, vol. 47(11), pages 1639-1651, December.
    2. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    3. Kavanagh, Anne M. & Broom, Dorothy H., 1998. "Embodied risk: My body, myself?," Social Science & Medicine, Elsevier, vol. 46(3), pages 437-444, February.
    4. Bayer, Ronald, 2008. "Stigma and the ethics of public health: Not can we but should we," Social Science & Medicine, Elsevier, vol. 67(3), pages 463-472, August.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Berghs, M. & Dyson, S.M. & Gabba, A. & Nyandemo, S.E. & Roberts, G. & Deen, G., 2020. "“You have to find a caring man, like your father!” gendering sickle cell and refashioning women's moral boundaries in Sierra Leone," Social Science & Medicine, Elsevier, vol. 259(C).

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Ovrum, Arnstein & Gustavsen, Geir Waehler & Rickertsen, Kyrre, 2012. "Health inequalities over the adult life course: the role of lifestyle choices," 2012 Conference, August 18-24, 2012, Foz do Iguacu, Brazil 125862, International Association of Agricultural Economists.
    2. Stine Glenstrup & Lotus Sofie Bast & Dina Danielsen & Anette Andersen & Tine Tjørnhøj-Thomsen, 2021. "Places to Smoke: Exploring Smoking-Related Practices among Danish Adolescents," IJERPH, MDPI, vol. 18(2), pages 1-12, January.
    3. Greco, Cinzia, 2015. "The Poly Implant Prothèse breast prostheses scandal: Embodied risk and social suffering," Social Science & Medicine, Elsevier, vol. 147(C), pages 150-157.
    4. Carpiano, Richard M. & Fitz, Nicholas S., 2017. "Public attitudes toward child undervaccination: A randomized experiment on evaluations, stigmatizing orientations, and support for policies," Social Science & Medicine, Elsevier, vol. 185(C), pages 127-136.
    5. Werner-Lin, Allison & Forbes Shepherd, Rowan & Young, Jennifer L. & Wilsnack, Catherine & Merrill, Shana L. & Greene, Mark H. & Khincha, Payal P., 2022. "Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body," Social Science & Medicine, Elsevier, vol. 301(C).
    6. Grace Lewis & Neneh Rowa-Dewar & Rachel O’Donnell, 2020. "Stigma and Smoking in the Home: Parents’ Accounts of Using Nicotine Replacement Therapy to Protect Their Children from Second-Hand Smoke," IJERPH, MDPI, vol. 17(12), pages 1-19, June.
    7. Gunson, Jessica Shipman, 2010. ""More natural but less normal": Reconsidering medicalisation and agency through women's accounts of menstrual suppression," Social Science & Medicine, Elsevier, vol. 71(7), pages 1324-1331, October.
    8. Sheikh, Zainab Afshan & Jensen, Anja M.B., 2019. "Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan," Social Science & Medicine, Elsevier, vol. 228(C), pages 103-110.
    9. Abdul Rashid & Azizah Ab Manan & Noorlia Yahya & Lailanor Ibrahim, 2014. "The Support for Smoke Free Policy and How It Is Influenced by Tolerance to Smoking – Experience of a Developing Country," PLOS ONE, Public Library of Science, vol. 9(10), pages 1-7, October.
    10. Arielle R. Deutsch & Rebecca Lustfield & Mohammad S. Jalali, 2022. "Community‐based system dynamics modelling of stigmatized public health issues: Increasing diverse representation of individuals with personal experiences," Systems Research and Behavioral Science, Wiley Blackwell, vol. 39(4), pages 734-749, July.
    11. Eileen Green & Frances Griffiths & Di Thompson, 2006. "‘Are My Bones Normal Doctor?’ the Role of Technology in Understanding and Communicating Health Risks for Midlife Women," Sociological Research Online, , vol. 11(4), pages 1-16, December.
    12. Lewis, Sophie & Thomas, Samantha L. & Blood, R. Warwick & Castle, David J. & Hyde, Jim & Komesaroff, Paul A., 2011. "How do obese individuals perceive and respond to the different types of obesity stigma that they encounter in their daily lives? A qualitative study," Social Science & Medicine, Elsevier, vol. 73(9), pages 1349-1356.
    13. Erol, Maral, 2011. "Melting bones: The social construction of postmenopausal osteoporosis in Turkey," Social Science & Medicine, Elsevier, vol. 73(10), pages 1490-1497.
    14. Rappert, Brian & Moyes, Richard & Lang, Iain, 2012. "The case for addressing explosive weapons: Conflict, violence and health," Social Science & Medicine, Elsevier, vol. 75(11), pages 2047-2054.
    15. Zhang, J. & Tong, L. & Lamberson, P.J. & Durazo-Arvizu, R.A. & Luke, A. & Shoham, D.A., 2015. "Leveraging social influence to address overweight and obesity using agent-based models: The role of adolescent social networks," Social Science & Medicine, Elsevier, vol. 125(C), pages 203-213.
    16. Evans-Polce, Rebecca J. & Castaldelli-Maia, Joao M. & Schomerus, Georg & Evans-Lacko, Sara E., 2015. "The downside of tobacco control? Smoking and self-stigma: A systematic review," Social Science & Medicine, Elsevier, vol. 145(C), pages 26-34.
    17. Dimond, Rebecca & Doheny, Shane & Ballard, Lisa & Clarke, Angus, 2022. "Genetic testing and family entanglements," Social Science & Medicine, Elsevier, vol. 298(C).
    18. Brown, Nik & Machin, Laura & McLeod, Danae, 2011. "Immunitary bioeconomy: The economisation of life in the international cord blood market," Social Science & Medicine, Elsevier, vol. 72(7), pages 1115-1122, April.
    19. Salter, Charlotte Ingrid & Howe, Amanda & McDaid, Lisa & Blacklock, Jeanette & Lenaghan, Elizabeth & Shepstone, Lee, 2011. "Risk, significance and biomedicalisation of a new population: Older women's experience of osteoporosis screening," Social Science & Medicine, Elsevier, vol. 73(6), pages 808-815, September.
    20. Machin, Laura L. & Brown, Nik & McLeod, Danae, 2012. "Giving to receive? The right to donate in umbilical cord blood banking for stem cell therapies," Health Policy, Elsevier, vol. 104(3), pages 296-303.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:139:y:2015:i:c:p:36-43. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.