BACKGROUND: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation. METHODS: This was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis. RESULTS: In total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report. CONCLUSIONS: Our study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.

1st Faculty of Medicine Charles University Prague Czech Republic

3rd Faculty of Medicine Charles University Prague Czech Republic

Center for Palliative Care Prague Czech Republic

Department of Pediatric Hematology and Oncology University Hospital Motol 5 Uvalu 84 Prague 5 150 06 Czech Republic

Pediatric Supportive Care Team University Hospital Motol Prague Czech Republic

Zobrazit více v PubMed

Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, et al. Mapping pediatric palliative care development in the WHO-European region: children living in low-to-middle-income countries are less likely to access it. J Pain Symptom Manage. 2020;60(4):746–53. doi: 10.1016/j.jpainsymman.2020.04.028. PubMed DOI

Kaye EC, Friebert S, Baker JN. Early integration of palliative care for children with high-risk cancer and their families. Vol. 63, Pediatric Blood and Cancer. 2016. p. 593–7. 10.1002/pbc.25848. PubMed

Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. [Review] [20 refs] Curr Opin Pediatr. 2006;18(1):10–4. doi: 10.1097/01.mop.0000193266.86129.47. PubMed DOI

Gans D, Kominski GF, Roby DH, Diamant AL, Chen X, Lin W et al. Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy Brief UCLA Cent Health Policy Res. 2012;(PB2012-3):1–8. PubMed

Groh G, Vyhnalek B, Feddersen B, Führer M, Borasio GD. Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers. J Palliat Med. 2013;16(8):848–56. doi: 10.1089/jpm.2012.0491. PubMed DOI

Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J et al. Easing of suffering in children with cancer at the end of life: is care changing ? J Clin Oncol. 2008;26(10):1717–23. 10.1200/JCO.2007.14.0277. PubMed

Sommerbakk R, Haugen DF, Tjora A, Kaasa S, Hjermstad MJ. Barriers to and facilitators for implementing quality improvements in palliative care - results from a qualitative interview study in Norway. BMC Palliat Care [Internet] 2016;15(1):1–17. doi: 10.1186/s12904-016-0132-5. PubMed DOI PMC

Davies B, Sehring SA, Partridge JC, Cooper BA, Hughes A, Philp JC, et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatr [Internet] 2008;121(2):282–8. doi: 10.1542/peds.2006-3153. PubMed DOI

Haines ER, Frost AC, Kane HL, Rokoske FS. Barriers to accessing palliative care for pediatric patients with cancer: a review of the literature. Cancer. 2018;124(11):2278–88. doi: 10.1002/cncr.31265. PubMed DOI

Verberne LM, Kars MC, Schepers SA, Schouten-Van Meeteren AYN, Grootenhuis MA, Van Delden JJM. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care. 2018;17(1):1–8. doi: 10.1186/s12904-018-0274-8. PubMed DOI PMC

Benini F, Congedi S, Rusalen F, Cavicchiolo ME, Lago P. Barriers to perinatal palliative care consultation. Front Pediatr 2020;8:1–5. 10.3389/fped.2020.590616. PubMed PMC

Walter JK, Hill DL, Didomenico C, Parikh S, Feudtner C. A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review. BMC Palliat Care. 2019;18(1):1–10. doi: 10.1186/s12904-019-0504-8. PubMed DOI PMC

Bergstraesser E, Hain RD, Pereira JL. The development of an instrument that can identify children with palliative care needs: the paediatric palliative screening scale (PaPaS scale): a qualitative study approach. BMC Palliat Care. 2013;12(1). 10.1186/1472-684X-12-20. PubMed PMC

Burke K, Coombes LH, Menezes A, Anderson A-K. The ‘surprise’ question in paediatric palliative care: a prospective cohort study. Palliat Med [Internet] 2017;32(2):535–42. doi: 10.1177/0269216317716061. PubMed DOI

Kaye EC, Jerkins J, Gushue CA, DeMarsh S, Sykes A, Lu Z, et al. Predictors of late palliative care referral in children with cancer. J Pain Symptom Manage [Internet] 2018;55(6):1550–6. doi: 10.1016/j.jpainsymman.2018.01.021. PubMed DOI PMC

Rapoport A, Gupta S. Children and adolescents with hematologic cancers deserve better end-of-life care. Cancer [Internet] 2021;127(20):3724–6. doi: 10.1002/cncr.33763. PubMed DOI

Kassam A, Sutradhar R, Widger K, Rapoport A, Pole JD, Nelson K, et al. Predictors of and trends in high-intensity end-of-life care among children with cancer: a population-based study using health services data. J Clin Oncol. 2017;35(2):236–42. doi: 10.1200/JCO.2016.68.8283. PubMed DOI

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

Moore D, Sheetz J. Pediatric palliative care consultation. Pediatr Clin North Am [Internet] 2014;61(4):735–47. doi: 10.1016/j.pcl.2014.04.007. PubMed DOI

Bradford N, Rolfe M, Ekberg S, Mitchell G, Beane T, Ferranti K, et al. Family meetings in paediatric palliative care: an integrative review. BMJ Support Palliat Care. 2021;11(3):288–95. doi: 10.1136/bmjspcare-2020-002333. PubMed DOI

Daxer M, Monz A, Hein K, Heitkamp N, Knochel K, Borasio GD, et al. How to open the door: a qualitative, observational study on initiating advance care discussions with parents in pediatric palliative care. J Palliat Med. 2022;25(4):562–9. doi: 10.1089/jpm.2021.0183. PubMed DOI

Bradford N, Herbert A, Mott C, Armfield N, Young J, Smith A. Components and principles of a pediatric palliative care consultation: results of a delphi study. J Palliat Med. 2014;17(11):1206–13. doi: 10.1089/jpm.2014.0121. PubMed DOI

Verberne LM, Schouten-van Meeteren AYN, Bosman DK, Colenbrander DA, Jagt CT, Grootenhuis MA, et al. Parental experiences with a paediatric palliative care team: a qualitative study. Palliat Med. 2017;31(10):956–63. doi: 10.1177/026921631769268. PubMed DOI

Bogetz JF, Root MC, Purser L, Torkildson C. Comparing health care provider-perceived barriers to pediatric palliative care fifteen years ago and today. J Palliat Med [Internet] 2018;22(2):145–51. doi: 10.1089/jpm.2018.0367. PubMed DOI

Clercq E, De, Rost M, Rakic M, Ansari M, Brazzola P, Wangmo T et al. The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective. BMC Palliat Care. 2019;18(1):55. 10.1186/s12904-019-0438-1. PubMed PMC

Todd Dalberg E, Jacob-Files PAC. Pediatric oncology providers perceptions of barriers and facilitators to early integration of pediatric palliative care. Pediatr Blood Cancer. 2013;60:1875–81. doi: 10.1002/pbc.24673. PubMed DOI PMC

Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol [Internet] 2013;13(1):117. doi: 10.1186/1471-2288-13-117. PubMed DOI PMC

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Heal Care. 2007;19(6):349–57. doi: 10.1093/intqhc/mzm042. PubMed DOI

Collingridge DS, Gantt EE. The quality of qualitative research. Am J Med Qual [Internet] 2008;23(5):389–95. doi: 10.1177/1062860608320646. PubMed DOI

Monterosso L, Kristjanson LJ, Phillips MB. The supportive and palliative care needs of Australian families of children who die from cancer. Palliat Med. 2009;23(6):526–36. doi: 10.1177/0269216309104060. PubMed DOI

Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians ’ perceptions of and preferred timing for pediatric palliative care. 2009;123(5). 10.1542/peds.2008-2721. PubMed

Roth M, Wang D, Kim M, Moody K, Care E. An assessment of the current state of palliative care education in pediatric hematology/oncology fellowship training exposure of fellows to patients receiving. Pediatr Blood Cancer. 2009;53:647–51. 10.1002/pbc.22110. PubMed

Sanderson A, Hall AM, Wolfe J. Advance care discussions: pediatric clinician preparedness and practices. J Pain Symptom Manage [Internet] 2016;51(3):520–8. doi: 10.1016/j.jpainsymman.2015.10.014. PubMed DOI

Krizova E, Simek J. Theory and practice of informed consent in the Czech Republic. J Med Ethics. 2007;33(5):273–7. doi: 10.1136/jme.2005.015164. PubMed DOI PMC

Rapoport A. Similarities and differences in Czech and canadian pediatric palliative care. 2021;2(1):49–51.

Morrison W, Clark JD, Lewis-Newby M, Kon AA. Titrating clinician directiveness in serious pediatric illness. Pediatrics. 2018;142(Suppl 3):178–86. doi: 10.1542/peds.2018-0516I. PubMed DOI

Zhukovsky DS, Herzog CE, Kaur G, Palmer JL, Bruera E. The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med. 2009;12(4):343–9. doi: 10.1089/jpm.2008.0152. PubMed DOI

Sisk B, Baker JN. A model of interpersonal trust, credibility, and relationship maintenance. Pediatrics. 2019;144(6). 10.1542/peds.2019-1319. PubMed PMC