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Communication Skills: The Patient as Co-pilot

  • Helen BulbeckEmail author
Chapter

Abstract

Daily interactions with patients and caregivers who are living with a brain tumour reveal that self-management practices, whilst being provided routinely in some places, tend to be on an ad hoc basis, reactive and unplanned. Patients do not know what support is available to them, where to seek help or what questions they should be asking. A shift to being empowered begins at the point of diagnosis, with a collaborative and interactive relationship between patients and healthcare professionals, which empowers patients to take on responsibility for their condition with the appropriate clinical support. This chapter explores why shared engagement is a prerequisite for optimised clinical care, what this looks like and how to achieve it so that it becomes the cornerstone of every communication between people living with a brain tumour and their clinical team.

Keywords

Communication Glioma Coaching Shared engagement 

References

  1. 1.
    Barry M, Edgman-Levitan S. Shared decision making – the pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780–1.CrossRefGoogle Scholar
  2. 2.
    brainstrust. Quality of life: what the brain cancer community needs [Internet]. Cowes: brainstrust; 2015. Updated 2 Apr 2015. https://issuu.com/brainstrust/docs/150309_what_the_community_needs_fin. Accessed 26 Aug 2017Google Scholar
  3. 3.
    Burnet N, Jefferies S, Benson R, Hunt D, Treasure F. Years of life lost (YLL) from cancer is an important measure of population burden – and should be considered when allocating research funds. Br J Cancer. 2005;92(2):241–5.CrossRefGoogle Scholar
  4. 4.
    Quality Health. National cancer patient experience survey 2016: national results summary [Internet]. Chesterfield: Quality Health; 2016. [updated 2016]. http://www.ncpes.co.uk/index.php/reports/2016-reports/national-reports-1/3572-cpes-2016-national-report/file. Accessed 26 Aug 2017Google Scholar
  5. 5.
    Rooney A. Challenges and opportunities in psychological neuro-oncology. Oncol News. 2011;2011(4):133–5.Google Scholar
  6. 6.
    Department of Health. Equality and excellence: liberating the NHS, vol. 57. London: Department of Health; 2010.Google Scholar
  7. 7.
    Flynn K, Smith M, Vanness D. A typology of preferences for participation in healthcare decision making. Soc Sci Med. 2006;63(5):1158–69.CrossRefGoogle Scholar
  8. 8.
    National Institute for Clinical Excellence. Improving supportive and palliative care for adults with cancer: The manual [Internet]. London: National Institute for Clinical Excellence; 2004. p. 70. [Updated 24 Mar 2004]. https://www.nice.org.uk/guidance/csg4/resources/improving-supportive-and-palliative-care-for-adults-with-cancer-pdf-773375005. Accessed 26 Aug 2017Google Scholar
  9. 9.
    Shepherd SC, Cavers D, Wallace LM, Hacking B, Scott SE, Bowyer DJ. Navigation’ to support decision making for patients with a high grade brain tumour. A qualitative evaluation. Neuro Oncol. 2012;14(2):4.Google Scholar
  10. 10.
    Cavers D, Hacking B, Erridge S, Kendall M, Morris P, Murray S. Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study. Can Med Assoc J. 2012;184(7):E373–82.CrossRefGoogle Scholar
  11. 11.
    Cavers D, Hacking B, Erridge S, Morris P, Kendall M, Murray S. Adjustment and support needs of glioma patients and their relatives: serial interviews. Psycho-Oncology. 2012;22(6):1299–305.CrossRefGoogle Scholar
  12. 12.
    Bartolo M, Zucchella C, Pace A, Lanzetta G, Vecchione C, Bartolo M, et al. Early rehabilitation after surgery improves functional outcome in inpatients with brain tumours. J Neuro-Oncol. 2011;107(3):537–44.CrossRefGoogle Scholar
  13. 13.
    Greene J, Hibbard J. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med. 2012;27(5):520–6.CrossRefGoogle Scholar
  14. 14.
    Hibbard J, Stockard J, Mahoney E, Tusler M. Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4p1):1005–26.CrossRefGoogle Scholar
  15. 15.
    Becker E, Roblin D. Translating primary care practice climate into patient activation. Med Care. 2008;46(8):795–805.CrossRefGoogle Scholar
  16. 16.
    Hibbard JH, Cunningham PJ. How engaged are consumers in their health and health care, and why does it matter? Health Syst Change Res Briefs. 2008;8:1–9.Google Scholar
  17. 17.
    Hibbard J, Mahoney E, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42(4):1443–63.CrossRefGoogle Scholar
  18. 18.
    Mosen DM, Schmittdiel J, Hibbard J, Sobel D, Remmers C, Bellows J. Is patient activation associated with outcomes of care for adults with chronic conditions? J Ambulat Care Manag. 2007;30(1):21–9.CrossRefGoogle Scholar
  19. 19.
    Fowles J, Terry P, Xi M, Hibbard J, Bloom C, Harvey L. Measuring self-management of patients’ and employees’ health: further validation of the Patient Activation Measure (PAM) based on its relation to employee characteristics. Patient Educ Couns. 2009;77(1):116–22.CrossRefGoogle Scholar
  20. 20.
    Edgman-Levitan S, Brady C, Howitt P. Partnering with patients, families, and communities for health: a global imperative – report of the family engagement working group 2013 [Internet]. Ar-Rayyan: World Innovation Summit for Health; 2013. [Updated 2013]. http://dpnfts5nbrdps.cloudfront.net/app/media/387. Accessed 26 Aug 2017.Google Scholar
  21. 21.
    Blunt I. Focus on preventable admissions: trends in emergency admissions for ambulatory care sensitive conditions, 2001 to 2013 [Internet]. London: The Health Foundation and the Nuffield Trust; 2013. http://www.qualitywatch.org.uk/sites/files/qualitywatch/field/field_document/131010_QualityWatch_Focus_Preventable_Admissions.pdf Google Scholar
  22. 22.
    Nesta. The business case for people powered health [Internet]. London: Nesta; 2013. [Updated 8 Apr 2013]. https://www.nesta.org.uk/sites/default/files/the_business_case_for_people_powered_health.pdf. Accessed 26 Aug 2017Google Scholar
  23. 23.
    Piil K, Juhler M, Jakobsen J, Jarden M. Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers: a systematic review. BMJ Support Palliat Care. 2014;6(1):27–34.CrossRefGoogle Scholar
  24. 24.
    brainstrust. Share aware pinboard [Internet]. Cowes: brainstrust; 2013. http://www.brainstrust.org.uk/pinboard/. Accessed 26 Aug 2017Google Scholar
  25. 25.
    Campbell H, Phaneuf M, Deane K. Cancer peer support programs—do they work? Patient Educ Couns. 2004;55(1):3–15.CrossRefGoogle Scholar
  26. 26.
    Hoey LM, Leropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Educ Couns. 2008;70(3):315–37.CrossRefGoogle Scholar
  27. 27.
    California Healthcare Foundation. Final chapter: CAL’ attitudes and experiences with death and dying [Internet]. Oakland, CA: California Healthcare Foundation; 2012. [Updated Feb 2012]. http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/PDF%20F/PDF%20FinalChapterDeathDying.pdf. Accessed 26 Aug 2017Google Scholar
  28. 28.
    Stanfield RB, editor. The art of focused conversation: 100 ways to access group wisdom in the workplace. Montreal, QC: The Canadian Institute of Cultural Affairs; 1997.Google Scholar
  29. 29.
    Alexander G. [2006]. Behavioural coaching—the GROW model. In: Passmore J, editor. Excellence in coaching: the industry guide. 2nd ed. London/Philadelphia: Kogan Page; 2010. p. 83–93. ISBN 9780749456672. OCLC 521754202.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Brainstrust – The Brain Cancer PeopleCowesUK

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