IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v363y2024ics0277953624009274.html
   My bibliography  Save this article

Patterns of shared meaning across personal narratives surrounding experiences with palliative care, serious illness, and the end of life

Author

Listed:
  • Matthys, Marjolein
  • Chambaere, Kenneth
  • Deforche, Benedicte
  • Cohen, Joachim
  • Deliens, Luc
  • Beernaert, Kim
  • Van Brussel, Leen
  • Dhollander, Naomi

Abstract

Prior observations of persistent public misconceptions and negative beliefs surrounding palliative care have led to extensive calls for public education on palliative care. Yet, the development of effective initiatives to improve public perceptions of palliative care is still hindered by a lack of research providing a deeper, contextualized understanding of the way people perceive and give meaning to palliative care. This study therefore set out to explore patterns of shared meaning across personal narratives surrounding experiences with palliative care, serious illness, and the end of life. These narratives were collected during a broad public engagement initiative on palliative care in Flanders, Belgium which included a call to share personal stories surrounding palliative care (which 72 persons did) as well as a Citizens' Forum in which 24 persons engaged in live conversations on palliative care. Reflexive thematic analysis was used to analyze the personal narratives and yielded four axes of meaning: 1) ‘Sense of Support’, describing feeling supported or abandoned on multiple levels with key elements of open and empathetic communication, being informed and listened to; 2) ‘Being-in-Time’, incorporating a renewed sense of temporality and the weight of uncertain prognosis; 3) ‘Constituting a Sense of Self while Coping with Life-Threatening Illness’, involving concerns surrounding role adjustments and posthumous reputation; and 4) ‘Going Through the Process of Dying’, unique to bereaved individuals' narratives, highlighting the importance of being informed during the dying process and honoring the wishes of the dying person. Together, these axes illuminate how both positive and stigmatized views on palliative care are shaped by broader patterns of meaning attribution, deeply ingrained in personal and social contexts. The identified narrative elements can play a crucial role in improving the content, reach, and impact of future public communication and education on palliative care, effectively enhancing public receptivity and engagement.

Suggested Citation

  • Matthys, Marjolein & Chambaere, Kenneth & Deforche, Benedicte & Cohen, Joachim & Deliens, Luc & Beernaert, Kim & Van Brussel, Leen & Dhollander, Naomi, 2024. "Patterns of shared meaning across personal narratives surrounding experiences with palliative care, serious illness, and the end of life," Social Science & Medicine, Elsevier, vol. 363(C).
    • Handle: RePEc:eee:socmed:v:363:y:2024:i:c:s0277953624009274
    DOI: 10.1016/j.socscimed.2024.117473
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953624009274
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2024.117473?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. Seale, Clive & van der Geest, Sjaak, 2004. "Good and bad death: Introduction," Social Science & Medicine, Elsevier, vol. 58(5), pages 883-885, March.
    2. van Wijngaarden, Els & Sanders, José, 2022. "‘I want to die on my own terms’: Dominant interpretative repertoires of ‘a good death’ in old age in Dutch newspapers," Social Science & Medicine, Elsevier, vol. 311(C).
    3. Driessen, Annelieke & Borgstrom, Erica & Cohn, Simon, 2021. "Placing death and dying: Making place at the end of life," Social Science & Medicine, Elsevier, vol. 291(C).
    4. Zimmermann, Camilla, 2004. "Denial of impending death: a discourse analysis of the palliative care literature," Social Science & Medicine, Elsevier, vol. 59(8), pages 1769-1780, October.
    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. Borgstrom, Erica & Walter, Tony, 2015. "Choice and compassion at the end of life: A critical analysis of recent English policy discourse," Social Science & Medicine, Elsevier, vol. 136, pages 99-105.
    2. Zimmermann, Camilla, 2012. "Acceptance of dying: A discourse analysis of palliative care literature," Social Science & Medicine, Elsevier, vol. 75(1), pages 217-224.
    3. Lang, Alexander, 2020. "The good death and the institutionalisation of dying: An interpretive analysis of the Austrian discourse," Social Science & Medicine, Elsevier, vol. 245(C).
    4. Carlos Laranjeira & Marília Dourado, 2022. "“Dignity as a Small Candle Flame That Doesn’t Go Out!”: An Interpretative Phenomenological Study with Patients Living with Advanced Chronic Obstructive Pulmonary Disease," IJERPH, MDPI, vol. 19(24), pages 1-18, December.
    5. Aita, Kaoruko & Kai, Ichiro, 2010. "Physicians' psychosocial barriers to different modes of withdrawal of life support in critical care: A qualitative study in Japan," Social Science & Medicine, Elsevier, vol. 70(4), pages 616-622, February.
    6. Stonington, Scott D., 2012. "On ethical locations: The good death in Thailand, where ethics sit in places," Social Science & Medicine, Elsevier, vol. 75(5), pages 836-844.
    7. Chabot, Boudewijn E. & Goedhart, Arnold, 2009. "A survey of self-directed dying attended by proxies in the Dutch population," Social Science & Medicine, Elsevier, vol. 68(10), pages 1745-1751, May.
    8. Panter-Brick, Catherine & Eggerman, Mark, 2018. "The field of medical anthropology in Social Science & Medicine," Social Science & Medicine, Elsevier, vol. 196(C), pages 233-239.
    9. Wilches-Gutiérrez, José L. & Arenas-Monreal, Luz & Paulo-Maya, Alfredo & Peláez-Ballestas, Ingris & Idrovo, Alvaro J., 2012. "A ‘beautiful death’: Mortality, death, and holidays in a Mexican municipality," Social Science & Medicine, Elsevier, vol. 74(5), pages 775-782.
    10. Kirby, Emma & Broom, Alex & MacArtney, John & Lewis, Sophie & Good, Phillip, 2021. "Hopeful dying? The meanings and practice of hope in palliative care family meetings," Social Science & Medicine, Elsevier, vol. 291(C).
    11. Olson, Rebecca E. & Smith, Alexandra & Good, Phillip & Neate, Emily & Hughes, Cody & Hardy, Janet, 2021. "Emotionally reflexive labour in end-of-life communication," Social Science & Medicine, Elsevier, vol. 291(C).

    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:363:y:2024:i:c:s0277953624009274. 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.