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Erschienen in:

07.04.2018 | Original Article

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

verfasst von: Douglas L. Hill, Jennifer K. Walter, Jessica A. Casas, Concetta DiDomenico, Julia E. Szymczak, Chris Feudtner

Erschienen in: Supportive Care in Cancer | Ausgabe 9/2018

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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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):14–19CrossRefPubMed

Davies B, Connaughty S (2002) Pediatric end of life care: lessons learned from parents. J Nurs Adm 32(1):5–7CrossRefPubMed

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. https://doi.org/10.1001/jamaoncol.2015.1953 CrossRefPubMedPubMedCentral

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):343–349CrossRefPubMed

Durall A, Zurakowski D, Wolfe J (2012) Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 129:e975–e982. https://doi.org/10.1542/peds.2011-2695 CrossRefPubMed

Johnston DL, Vadeboncoeur C (2012) Palliative care consultation in pediatric oncology. Support Care Cancer 20(4):799–803. https://doi.org/10.1007/s00520-011-1152-6 CrossRefPubMed

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. https://doi.org/10.1007/s00520-014-2203-6 CrossRefPubMed

McCabe ME, Hunt EA, Serwint JR (2008) Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics 121(4):e731–e737. https://doi.org/10.1542/peds.2007-1657 CrossRefPubMed

Thompson LA, Knapp C, Madden V, Shenkman E (2009) Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics 123(5):e777–e782. https://doi.org/10.1542/peds.2008-2721 CrossRefPubMed

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. https://doi.org/10.1097/CCO.0b013e328354b2f6 CrossRefPubMed

11.

Boyle DK, Kochinda C (2004) Enhancing collaborative communication of nurse and physician leadership in two intensive care units. J Nurs Adm 34(2):60–70CrossRefPubMed

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):941–966CrossRef

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. https://doi.org/10.1177/1049909116681972

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. https://doi.org/10.1016/j.jcrc.2014.11.016 CrossRefPubMed

15.

Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M (2015) Patients and staff as codesigners of healthcare services. BMJ 350:g7714CrossRefPubMed

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. https://doi.org/10.1016/j.ijnurstu.2017.01.002 CrossRefPubMed

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. https://doi.org/10.1007/s00520-012-1470-3 CrossRefPubMedPubMedCentral

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. https://doi.org/10.1007/s00520-015-2677-x CrossRefPubMed

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. https://doi.org/10.1111/jocn.13050 CrossRefPubMed

20.

Gustavsson SM (2014) Improvements in neonatal care; using experience-based co-design. Int J Health Care Qual Assur 27(5):427–438. https://doi.org/10.1108/ijhcqa-02-2013-0016 CrossRefPubMed

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. https://doi.org/10.1136/bmjopen-2014-006688 CrossRefPubMedPubMedCentral

22.

Knowles MS (1984) Adragogy in action. Jossey-Bass, San Francisco

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):909–913CrossRefPubMed

24.

Emerson RM, Fretz RI, Shaw LL (1995) Writing ethnographic fieldnotes. University of Chicago Press, ChicagoCrossRef

25.

Corbin J, Strauss A (1990) Grounded theory method: procedures, canons, and evaluative criteria. Qual Sociol 13:3–21CrossRef

26.

Smith AK, White DB, Arnold RM (2013) Uncertainty: the other side of prognosis. N Engl J Med 368(26):2448–2450CrossRefPubMedPubMedCentral

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):243–249CrossRefPubMedPubMedCentral

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. e106CrossRefPubMed

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. https://doi.org/10.1542/peds.2010-3225 CrossRefPubMed

30.

Clarke J, Quin S (2007) Professional carers’ experiences of providing a pediatric palliative care service in Ireland. Qual Health Res 17(9):1219–1231CrossRefPubMed

31.

Foley KM, Gelband HG (2001) Improving palliative care for cancer. National Academies Press, Washington, DC

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):33–47CrossRefPubMed

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. https://doi.org/10.1007/s00520-011-1216-7 CrossRefPubMed

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. https://doi.org/10.1370/afm.1511 CrossRefPubMedPubMedCentral

35.

Beck AT (2005) The current state of cognitive therapy: a 40-year retrospective. Arch Gen Psychiatry 62(9):953–959. https://doi.org/10.1001/archpsyc.62.9.953 CrossRefPubMed

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. https://doi.org/10.1177/0145445516629939 CrossRefPubMed

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. https://doi.org/10.1177/0145445515621488 CrossRefPubMed

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):893–906CrossRefPubMedPubMedCentral

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. https://doi.org/10.1089/jpm.2012.0622 CrossRefPubMed

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. https://doi.org/10.1089/jpm.2010.0229 CrossRefPubMed

41.

Anderson W, Donesky D, Joseph D, Sumser B, Reid T (2016) Interprofessional training in palliative care communication handout. University of California Regents, California

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. https://doi.org/10.5334/ijic.2426 CrossRefPubMedPubMedCentral

Titel: The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
verfasst von: Douglas L. Hill
Jennifer K. Walter
Jessica A. Casas
Concetta DiDomenico
Julia E. Szymczak
Chris Feudtner
Publikationsdatum: 07.04.2018
Verlag: Springer Berlin Heidelberg
Erschienen in: Supportive Care in Cancer / Ausgabe 9/2018
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4190-5

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