IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v74y2012i5p796-804.html
   My bibliography  Save this article

‘Doing the "Right" Thing’: How parents experience and manage decision-making for children’s ‘Normalising’ surgeries

Author

Listed:
  • Nelson, Pauline Anne
  • Caress, Ann-Louise
  • Glenny, Anne-Marie
  • Kirk, Susan A.

Abstract

Using cleft lip and palate as an exemplar, this article examines parents’ decision-making for children in the context of elective treatments which aim to ‘normalise’ a child’s function, appearance, communication or identity. Using purposive and theoretical sampling, 35 parents with children from infancy to young adulthood were recruited through a specialist cleft centre in England. Parents were interviewed in-depth between 2006 and 2008 about their beliefs and motivations in relation to treatment decision-making in this context. A grounded theory approach was used to analyse the data. Findings revealed a core category, ‘doing the “right” thing’, that encapsulated parents’ main concern in relation to their children’s treatment and highlighted several emotional, social and cultural considerations underpinning their decision-making stance. Parents fulfilled a perceived ‘moral’ obligation to be ‘good’ parents by pursuing the ‘normalising’ treatments, particularly surgeries, made available to their children. Such treatments were viewed as a way of facilitating their child’s social inclusion and helping them reach their full potential. In order to enable their continued pursuit of treatments over the long-term, parents also constructed specialist practitioners as highly competent and particularly trustworthy. This article captures the complexities involved in parents’ decision-making for children’s elective ‘normalising’ treatments, where both functional and appearance-related concerns are involved. It suggests that social norms about parenting, physical appearance and healthcare practitioner power may significantly shape decision-making in this context, so that such choices may be viewed primarily as ‘moral’ rather than social. Services could support parents with such challenges, by gauging their needs for information about surgery and its likely outcomes and providing emotional/decisional support to consider all available options.

Suggested Citation

  • Nelson, Pauline Anne & Caress, Ann-Louise & Glenny, Anne-Marie & Kirk, Susan A., 2012. "‘Doing the "Right" Thing’: How parents experience and manage decision-making for children’s ‘Normalising’ surgeries," Social Science & Medicine, Elsevier, vol. 74(5), pages 796-804.
  • Handle: RePEc:eee:socmed:v:74:y:2012:i:5:p:796-804
    DOI: 10.1016/j.socscimed.2011.11.024
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953612000202
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2011.11.024?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. Larson, Elizabeth, 1998. "Reframing the meaning of disability to families: the embrace of paradox," Social Science & Medicine, Elsevier, vol. 47(7), pages 865-875, October.
    2. Gabe, Jonathan & Olumide, Gillian & Bury, Michael, 2004. "'It takes three to tango':: a framework for understanding patient partnership in paediatric clinics," Social Science & Medicine, Elsevier, vol. 59(5), pages 1071-1079, September.
    3. Okubo, Suguru & Takahashi, Miyako & Kai, Ichiro, 2008. "How Japanese parents of deaf children arrive at decisions regarding pediatric cochlear implantation surgery: A qualitative study," Social Science & Medicine, Elsevier, vol. 66(12), pages 2436-2447, June.
    4. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1999. "Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model," Social Science & Medicine, Elsevier, vol. 49(5), pages 651-661, September.
    5. Sobo, Elisa J., 2005. "Parents' perceptions of pediatric day surgery risks: unforeseeable complications, or avoidable mistakes?," Social Science & Medicine, Elsevier, vol. 60(10), pages 2341-2350, May.
    6. Wirtz, Veronika & Cribb, Alan & Barber, Nick, 2006. "Patient-doctor decision-making about treatment within the consultation--A critical analysis of models," Social Science & Medicine, Elsevier, vol. 62(1), pages 116-124, January.
    7. Loomes, Graham & Sugden, Robert, 1987. "Testing for Regret and Disappointment in Choice under Uncertainty," Economic Journal, Royal Economic Society, vol. 97(388a), pages 118-129, Supplemen.
    Full references (including those not matched with items on IDEAS)

    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. Ellen A. Lipstein & William B. Brinkman & Maria T. Britto, 2012. "What Is Known about Parents’ Treatment Decisions? A Narrative Review of Pediatric Decision Making," Medical Decision Making, , vol. 32(2), pages 246-258, March.
    2. Ishikawa, Hirono & Hashimoto, Hideki & Kiuchi, Takahiro, 2013. "The evolving concept of “patient-centeredness” in patient–physician communication research," Social Science & Medicine, Elsevier, vol. 96(C), pages 147-153.
    3. Mendick, Nicola & Young, Bridget & Holcombe, Christopher & Salmon, Peter, 2010. "The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives," Social Science & Medicine, Elsevier, vol. 70(12), pages 1904-1911, June.
    4. Clinch, Megan & Benson, John, 2013. "Making information ‘relevant’: General Practitioner judgments and the production of patient involvement," Social Science & Medicine, Elsevier, vol. 96(C), pages 104-111.
    5. Sacha Bourgeois-Gironde, 2017. "How regret moves individual and collective choices towards rationality," Chapters, in: Morris Altman (ed.), Handbook of Behavioural Economics and Smart Decision-Making, chapter 11, pages 188-204, Edward Elgar Publishing.
    6. Karle, Heiko & Schumacher, Heiner & Vølund, Rune, 2023. "Consumer loss aversion and scale-dependent psychological switching costs," Games and Economic Behavior, Elsevier, vol. 138(C), pages 214-237.
    7. van Dijk, Wilco W. & van der Pligt, Joop, 1997. "The Impact of Probability and Magnitude of Outcome on Disappointment and Elation," Organizational Behavior and Human Decision Processes, Elsevier, vol. 69(3), pages 277-284, March.
    8. Karnieli-Miller, Orit & Eisikovits, Zvi, 2009. "Physician as partner or salesman? Shared decision-making in real-time encounters," Social Science & Medicine, Elsevier, vol. 69(1), pages 1-8, July.
    9. Paul C. Schroy III & Karen Emmons & Ellen Peters & Julie T. Glick & Patricia A. Robinson & Maria A. Lydotes & Shamini Mylvanaman & Stephen Evans & Christine Chaisson & Michael Pignone & Marianne Prout, 2011. "The Impact of a Novel Computer-Based Decision Aid on Shared Decision Making for Colorectal Cancer Screening," Medical Decision Making, , vol. 31(1), pages 93-107, January.
    10. Jaime Moore & Matthew Haemer & Nazrat Mirza & Ying Z Weatherall & Joan Han & Caren Mangarelli & Mary Jane Hawkins & Stavra Xanthakos & Robert Siegel, 2019. "Pilot Testing of a Patient Decision Aid for Adolescents with Severe Obesity in US Pediatric Weight Management Programs within the COMPASS Network," IJERPH, MDPI, vol. 16(10), pages 1-12, May.
    11. Kevin Mertz & Romil F. Shah & Sara L. Eppler & Jeffrey Yao & Marc Safran & Ariel Palanca & Serena S. Hu & Michael Gardner & Derek F. Amanatullah & Robin N. Kamal, 2020. "A Simple Goal Elicitation Tool Improves Shared Decision Making in Outpatient Orthopedic Surgery: A Randomized Controlled Trial," Medical Decision Making, , vol. 40(6), pages 766-773, August.
    12. Sarah-Maude Deschênes & Marie-Pierre Gagnon & France Légaré & Annie Lapointe & Stéphane Turcotte & Sophie Desroches, 2013. "Psychosocial Factors of Dietitians' Intentions to Adopt Shared Decision Making Behaviours: A Cross-Sectional Survey," PLOS ONE, Public Library of Science, vol. 8(5), pages 1-7, May.
    13. Clarissa Hsu & David T. Liss & Dominick L. Frosch & Emily O. Westbrook & David Arterburn, 2017. "Exploring Provider Reactions to Decision Aid Distribution and Shared Decision Making," Medical Decision Making, , vol. 37(1), pages 113-126, January.
    14. Johannes Abeler & Armin Falk & Lorenz Goette & David Huffman, 2011. "Reference Points and Effort Provision," American Economic Review, American Economic Association, vol. 101(2), pages 470-492, April.
    15. Lee, Yin-Yang & Lin, Julia L., 2010. "Do patient autonomy preferences matter? Linking patient-centered care to patient-physician relationships and health outcomes," Social Science & Medicine, Elsevier, vol. 71(10), pages 1811-1818, November.
    16. Aluma Dembo & Shachar Kariv & Matthew Polisson & John Quah, 2021. "Ever since Allais," IFS Working Papers W21/15, Institute for Fiscal Studies.
    17. Coast, Joanna, 2018. "A history that goes hand in hand: Reflections on the development of health economics and the role played by Social Science & Medicine, 1967–2017," Social Science & Medicine, Elsevier, vol. 196(C), pages 227-232.
    18. Underman, Kelly & Hirshfield, Laura E., 2016. "Detached concern?: Emotional socialization in twenty-first century medical education," Social Science & Medicine, Elsevier, vol. 160(C), pages 94-101.
    19. Chen Zhang & Kevin Fiscella & Yu Liu, 2022. "Exploring the Role of Provider–Patient Communication in Women’s Sexual Health and Pre-Exposure Prophylaxis Care in the Primary Care Settings in New York State of the United States," IJERPH, MDPI, vol. 19(13), pages 1-15, July.
    20. Broll, Udo & Welzel, Peter & Wong, Kit Pong, 2014. "Multinational firm, exchange rate risk and the impact of regret on trade," Dresden Discussion Paper Series in Economics 04/14, Technische Universität Dresden, Faculty of Business and Economics, Department of Economics.

    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:74:y:2012:i:5:p:796-804. 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.