Supportive Care in Cancer

, Volume 26, Issue 9, pp 3249–3256 | Cite as

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology

  • Douglas L. Hill
  • Jennifer K. Walter
  • Jessica A. Casas
  • Concetta DiDomenico
  • Julia E. Szymczak
  • Chris Feudtner
Original Article



Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child’s death. The goals of the current project were to learn about pediatric oncology team members’ perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach.


We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration.


The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices.


The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.


Pediatric oncology Pediatric palliative care Experience-based codesign Interdisciplinary collaboration Team interventions Uncertainty Role ambiguity Communication 



We thank all pediatric oncology team members who participated in this study. We thank Pamela G. Nathanson, MBE and Theodore E. Schall, MBE MSW for their comments on the manuscript.

Funding information

Funding for this project was provided by the National Cancer Institute Grant R21CA198049-02.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Supplementary material

520_2018_4190_MOESM1_ESM.docx (138 kb)
ESM 1 (DOCX 138 kb)


  1. 1.
    Contro N, Larson J, Scofield S, Sourkes B, Cohen H (2002) Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 156(1):14–19CrossRefPubMedGoogle Scholar
  2. 2.
    Davies B, Connaughty S (2002) Pediatric end of life care: lessons learned from parents. J Nurs Adm 32(1):5–7CrossRefPubMedGoogle Scholar
  3. 3.
    Mack JW, Chen LH, Cannavale K, Sattayapiwat O, Cooper RM, Chao CT (2015) End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 1:592–600. CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Zhukovsky D, Herzog C, Kaur G, Palmer JL, Bruera E (2009) The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med 12(4):343–349CrossRefPubMedGoogle Scholar
  5. 5.
    Durall A, Zurakowski D, Wolfe J (2012) Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 129:e975–e982. CrossRefPubMedGoogle Scholar
  6. 6.
    Johnston DL, Vadeboncoeur C (2012) Palliative care consultation in pediatric oncology. Support Care Cancer 20(4):799–803. CrossRefPubMedGoogle Scholar
  7. 7.
    Wentlandt K, Krzyzanowska MK, Swami N, Rodin G, Le LW, Sung L, Zimmermann C (2014) Referral practices of pediatric oncologists to specialized palliative care. Support Care Cancer 22(9):2315–2322. CrossRefPubMedGoogle Scholar
  8. 8.
    McCabe ME, Hunt EA, Serwint JR (2008) Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics 121(4):e731–e737. CrossRefPubMedGoogle Scholar
  9. 9.
    Thompson LA, Knapp C, Madden V, Shenkman E (2009) Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics 123(5):e777–e782. CrossRefPubMedGoogle Scholar
  10. 10.
    Menard C, Merckaert I, Razavi D, Libert Y (2012) Decision-making in oncology: a selected literature review and some recommendations for the future. Curr Opin Oncol 24(4):381–390. CrossRefPubMedGoogle Scholar
  11. 11.
    Boyle DK, Kochinda C (2004) Enhancing collaborative communication of nurse and physician leadership in two intensive care units. J Nurs Adm 34(2):60–70CrossRefPubMedGoogle Scholar
  12. 12.
    Nembhard IM, Edmondson AC (2006) Making it safe: the effects of leader inclusiveness and professional status on psychological safety and improvement efforts in health care teams. J Organ Behav 27(7):941–966CrossRefGoogle Scholar
  13. 13.
    Brown CE, Back AL, Ford DW, Kross EK, Downey L, Shannon SE, Curtis JR, Engelberg RA (2016) Self-assessment scores improve after simulation-based palliative care communication skill workshops. Am J Hosp Palliat Care:45–51.
  14. 14.
    Arnold RM, Back AL, Barnato AE, Prendergast TJ, Emlet LL, Karpov I, White PH, Nelson JE (2015) The Critical Care Communication project: improving fellows’ communication skills. J Crit Care 30(2):250–254. CrossRefPubMedGoogle Scholar
  15. 15.
    Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M (2015) Patients and staff as codesigners of healthcare services. BMJ 350:g7714CrossRefPubMedGoogle Scholar
  16. 16.
    Blackwell RW, Lowton K, Robert G, Grudzen C, Grocott P (2017) Using experience-based co-design with older patients, their families and staff to improve palliative care experiences in the emergency department: a reflective critique on the process and outcomes. Int J Nurs Stud 68:83–94. CrossRefPubMedGoogle Scholar
  17. 17.
    Tsianakas V, Robert G, Maben J, Richardson A, Dale C, Griffin M, Wiseman T (2012) Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Support Care Cancer 20(11):2639–2647. CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Tsianakas V, Robert G, Richardson A, Verity R, Oakley C, Murrells T, Flynn M, Ream E (2015) Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff. Support Care Cancer 23(10):3069–3080. CrossRefPubMedGoogle Scholar
  19. 19.
    Gustavsson S, Gremyr I, Kenne Sarenmalm E (2015) Designing quality of care - contributions from parents: Parents’ experiences of care processes in paediatric care and their contribution to improvements of the care process in collaboration with healthcare professionals. J Clin Nurs 25:742–751. CrossRefPubMedGoogle Scholar
  20. 20.
    Gustavsson SM (2014) Improvements in neonatal care; using experience-based co-design. Int J Health Care Qual Assur 27(5):427–438. CrossRefPubMedGoogle Scholar
  21. 21.
    Palmer VJ, Chondros P, Piper D, Callander R, Weavell W, Godbee K, Potiriadis M, Richard L, Densely K, Herrman H, Furler J, Pierce D, Schuster T, Iedema R, Gunn J (2015) The CORE study protocol: a stepped wedge cluster randomised controlled trial to test a co-design technique to optimise psychosocial recovery outcomes for people affected by mental illness in the community mental health setting. BMJ Open 5(3):e006688. CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Knowles MS (1984) Adragogy in action. Jossey-Bass, San FranciscoGoogle Scholar
  23. 23.
    Manning PR, Clintworth WA, Sinopoli LM, Taylor JP, Krochalk PC, Gilman NJ, Denson TA, Stufflebeam DL, Knowles MS (1987) A method of self-directed learning in continuing medical education with implications for recertification. Ann Intern Med 107(6):909–913CrossRefPubMedGoogle Scholar
  24. 24.
    Emerson RM, Fretz RI, Shaw LL (1995) Writing ethnographic fieldnotes. University of Chicago Press, ChicagoCrossRefGoogle Scholar
  25. 25.
    Corbin J, Strauss A (1990) Grounded theory method: procedures, canons, and evaluative criteria. Qual Sociol 13:3–21CrossRefGoogle Scholar
  26. 26.
    Smith AK, White DB, Arnold RM (2013) Uncertainty: the other side of prognosis. N Engl J Med 368(26):2448–2450CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Schenker Y, White DB, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM (2013) “It hurts to know…and it helps”: exploring how surrogates in the ICU cope with prognostic information. J Palliat Med 16(3):243–249CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Kuhn G, Goldberg R, Compton S (2009) Tolerance for uncertainty, burnout, and satisfaction with the career of emergency medicine. Ann Emerg Med 54(1):106–113. e106CrossRefPubMedGoogle Scholar
  29. 29.
    Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J (2011) Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 127(6):1094–1101. CrossRefPubMedGoogle Scholar
  30. 30.
    Clarke J, Quin S (2007) Professional carers’ experiences of providing a pediatric palliative care service in Ireland. Qual Health Res 17(9):1219–1231CrossRefPubMedGoogle Scholar
  31. 31.
    Foley KM, Gelband HG (2001) Improving palliative care for cancer. National Academies Press, Washington, DCGoogle Scholar
  32. 32.
    Kabat-Zinn J (1982) An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation: theoretical considerations and preliminary results. Gen Hosp Psychiatry 4(1):33–47CrossRefPubMedGoogle Scholar
  33. 33.
    Altschuler A, Rosenbaum E, Gordon P, Canales S, Avins AL (2012) Audio recordings of mindfulness-based stress reduction training to improve cancer patients’ mood and quality of life—a pilot feasibility study. Support Care Cancer 20(6):1291–1297. CrossRefPubMedGoogle Scholar
  34. 34.
    Fortney L, Luchterhand C, Zakletskaia L, Zgierska A, Rakel D (2013) Abbreviated mindfulness intervention for job satisfaction, quality of life, and compassion in primary care clinicians: a pilot study. Ann Fam Med 11(5):412–420. CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Beck AT (2005) The current state of cognitive therapy: a 40-year retrospective. Arch Gen Psychiatry 62(9):953–959. CrossRefPubMedGoogle Scholar
  36. 36.
    Glassman LH, Forman EM, Herbert JD, Bradley LE, Foster EE, Izzetoglu M, Ruocco AC (2016) The effects of a brief acceptance-based behavioral treatment versus traditional cognitive-behavioral treatment for public speaking anxiety: an exploratory trial examining differential effects on performance and neurophysiology. Behav Modif 40:748–776. CrossRefPubMedGoogle Scholar
  37. 37.
    Larsson A, Hooper N, Osborne LA, Bennett P, McHugh L (2015) Using brief cognitive restructuring and cognitive defusion techniques to cope with negative thoughts. Behav Modif 40:452–482. CrossRefPubMedGoogle Scholar
  38. 38.
    Jackson VA, Mack J, Matsuyama R, Lakoma MD, Sullivan AM, Arnold RM, Weeks JC, Block SD (2008) A qualitative study of oncologists’ approaches to end-of-life care. J Palliat Med 11(6):893–906CrossRefPubMedPubMedCentralGoogle Scholar
  39. 39.
    Klarare A, Hagelin CL, Furst CJ, Fossum B (2013) Team interactions in specialized palliative care teams: a qualitative study. J Palliat Med 16(9):1062–1069. CrossRefPubMedGoogle Scholar
  40. 40.
    O’Connor M, Fisher C (2011) Exploring the dynamics of interdisciplinary palliative care teams in providing psychosocial care: “Everybody thinks that everybody can do it and they can’t”. J Palliat Med 14(2):191–196. CrossRefPubMedGoogle Scholar
  41. 41.
    Anderson W, Donesky D, Joseph D, Sumser B, Reid T (2016) Interprofessional training in palliative care communication handout. University of California Regents, CaliforniaGoogle Scholar
  42. 42.
    Amador S, Goodman C, Mathie E, Nicholson C (2016) Evaluation of an organisational intervention to promote integrated working between health services and care homes in the delivery of end-of-life care for people with dementia: understanding the change process using a social identity approach. Int J Integr Care 16(2):14. CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Douglas L. Hill
    • 1
  • Jennifer K. Walter
    • 1
  • Jessica A. Casas
    • 2
  • Concetta DiDomenico
    • 1
  • Julia E. Szymczak
    • 3
  • Chris Feudtner
    • 1
  1. 1.Roberts Center for Pediatric ResearchThe Children’s Hospital of PhiladelphiaPhiladelphiaUSA
  2. 2.Texas Children’s HospitalHoustonUSA
  3. 3.Perelman School of MedicineUniversity of PennsylvaniaPhiladelphiaUSA

Personalised recommendations