IDEAS home Printed from https://ideas.repec.org/a/wly/jocnur/v27y2018i15-16p3044-3055.html
   My bibliography  Save this article

Patients’ experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: A case study

Author

Listed:
  • Tina Wang Vedelø
  • Jens Christian Hedemann Sørensen
  • Charlotte Delmar

Abstract

Aims and objectives To identify and describe patients’ experiences and care needs throughout the diagnostic phase of an integrated brain cancer pathway. Background A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affects patients’ ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients; however, the experiences and care needs of patients going through the diagnostic phase of a standardised integrated brain cancer pathway have not previously been explored. Design A case study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour. Methods Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material. Results Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants’ perceptions of the relationship with the healthcare providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control. Conclusions Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled healthcare providers, participants experienced an existential recognition and alleviation of emotional distress. Relevance to clinical practice Patients receiving a brain tumour diagnosis experience unmet care needs in several areas during their hospital stay. There is a need for interventions from healthcare providers.

Suggested Citation

  • Tina Wang Vedelø & Jens Christian Hedemann Sørensen & Charlotte Delmar, 2018. "Patients’ experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: A case study," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(15-16), pages 3044-3055, August.
  • Handle: RePEc:wly:jocnur:v:27:y:2018:i:15-16:p:3044-3055
    DOI: 10.1111/jocn.14372
    as

    Download full text from publisher

    File URL: https://doi.org/10.1111/jocn.14372
    Download Restriction: no

    File URL: https://libkey.io/10.1111/jocn.14372?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
    ---><---

    More about this item

    Statistics

    Access and download statistics

    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:wly:jocnur:v:27:y:2018:i:15-16:p:3044-3055. 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.

    We have no bibliographic references for this item. You can help adding them by using 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: Wiley Content Delivery (email available below). General contact details of provider: https://doi.org/10.1111/(ISSN)1365-2702 .

    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.