Hostname: page-component-848d4c4894-4rdrl Total loading time: 0 Render date: 2024-06-17T07:16:59.505Z Has data issue: false hasContentIssue false

Listening to parents: The role of symptom perception in pediatric palliative home care

Published online by Cambridge University Press:  22 May 2015

René Vollenbroich*
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany Department of Cardiology, University Hospital Bern, Berne, Switzerland
Gian Domenico Borasio
Service de Soins Palliatifs, Centre Hospitalier Universitaire Vaudois (CHUV), University of Lausanne, Lausanne, Switzerland
Ayda Duroux
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
Monika Grasser
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
Monika Brandstätter
Interdisciplinary Center for Palliative Medicine, Ludwig-Maximilians-University Munich, Munich, Germany
Monika Führer
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
Address correspondence and reprint requests to: René Vollenbroich, Department of Cardiology, Inselspital Bern, University of Berne, Murtenstrasse 5, 3008 Berne, Switzerland. E-mail:



This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.


In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).


Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0–10) and rated the child's death as highly peaceful (median 9).

Significance of the results:

The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Original Articles
Copyright © Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)



Bagatell, R., Meyer, R., Herron, S., Berger, A. and Villar, R. (2002). When children die: a seminar series for pediatric residents. Pediatrics, 110, 348–53.Google Scholar
Bona, K., Bates, J. and Wolfe, J. (2011). Massachusetts' Pediatric Palliative Care Network: successful implementation of a novel state-funded pediatric palliative care program. Journal of Palliative Medicine, 14, 1217–23.Google Scholar
Carter, B. S., Howenstein, M., Gilmer, M. J., Throop, P., France, D. & Whitlock, J. A. (2004). Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics, 114, e361–6.Google Scholar
Dangel, T. (2002). The status of pediatric palliative care in Europe. Journal of Pain and Symptom Management, 24, 160165.Google Scholar
Drake, R., Frost, J. & Collins, J. J. (2003). The symptoms of dying children. Journal of Pain and Symptom Management, 26, 594603.CrossRefGoogle ScholarPubMed
Dussel, V., Kreicbergs, U., Hilden, J. M., Watterson, J., Moore, C., Turner, B. G., Weeks, J. C. & Wolfe, J. (2009). Looking beyond where children die: determinants and effects of planning a child's location of death. Journal of Pain and Symptom Management, 37, 3343.Google Scholar
Ellershaw, J. & Ward, C. (2003). Care of the dying patient: the last hours or days of life. British Medical Journal, 326, 30–4.Google Scholar
Friedrichsdorf, S. J., Remke, S., Symalla, B., Gibbon, C. & Chrastek, J. (2007). Developing a pain and palliative care programme at a US children's hospital. International Journal of Palliative Nursing, 13, 534–42.CrossRefGoogle Scholar
Galloway, K. S. & Yaster, M. (2000). Pain and symptom control in terminally ill children. Pediatric Clinics of North America, 47, 711–46.Google Scholar
Goldman, A. & Chir, B. (2000). Symptoms and suffering at the end of life in children with cancer [Letter to the editor]. New England Journal of Medicine, 342, 1998.Google ScholarPubMed
Goldman, A., Hewitt, M., Collins, G. S., Childs, M. & Hain, R. (2006). Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics, 117, e1179–86.CrossRefGoogle Scholar
Hendricks-Ferguson, V. (2008). Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncology Nursing Forum, 35, e108–15.CrossRefGoogle ScholarPubMed
Hilden, J. M., Emanuel, E. J., Fairclough, D. L., Link, M. P., Foley, K. M., Clarridge, B. C., Schnipper, L. E. & Mayer, R. J. (2001). Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. Journal of Clinical Oncology, 19, 205–12.CrossRefGoogle ScholarPubMed
Himelstein, B. P., Hilden, J. M., Boldt, A. M. & Weissman, D. (2004). Pediatric palliative care. New England Journal of Medicine, 350, 1752–62.Google Scholar
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Bjork, O., Steineck, G. & Henter, J. I. (2005). Care-related distress: a nationwide study of parents who lost their child to cancer. Journal of Clinical Oncology, 23, 9162–71.CrossRefGoogle ScholarPubMed
Liben, S., Papadatou, D. & Wolfe, J. (2008). Paediatric palliative care: challenges and emerging ideas. The Lancet, 371, 852864.Google Scholar
Michelson, K. N., Ryan, A. D., Jovanovic, B. & Frader, J. (2009). Pediatric residents' and fellows' perspectives on palliative care education. Journal of Palliative Medicine, 12, 451–7.Google Scholar
Moody, K., Siegel, L., Scharbach, K., Cunningham, L. & Cantor, R. M. (2011). Pediatric palliative care. Primary Care, 38, 327–61, ix.Google Scholar
Morgan, E. R. & Murphy, S. B. (2000). Care of children who are dying of cancer. New England Journal of Medicine, 342, 347–8.CrossRefGoogle ScholarPubMed
Pierucci, R. L., Kirby, R. S. & Leuthner, S. R. (2001). End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service. Pediatrics, 108, 653660.CrossRefGoogle ScholarPubMed
Poltorak, D. Y. & Benore, E. (2006). Cognitive-behavioral interventions for physical symptom management in pediatric palliative medicine. Child & Adolescent Psychiatric Clinics of North America, 15, 683–91.CrossRefGoogle ScholarPubMed
Pritchard, M., Burghen, E., Srivastava, D. K., Okuma, J., Anderson, L., Powell, B., Furman, W. L. & Hinds, P. S. (2008). Cancer-related symptoms most concerning to parents during the last week and last day of their child's life. Pediatrics, 121, e1301–9.CrossRefGoogle ScholarPubMed
Steele, R., Bosma, H., Johnston, M. F., Cadell, S., Davies, B., Siden, H. & Straatman, L. (2008). Research priorities in pediatric palliative care: a Delphi study. Journal of Palliative Care, 24, 229–39.Google Scholar
Swinney, R., Yin, L., Lee, A., Rubin, D. and Anderson, C. (2007). The role of support staff in pediatric palliative care: Their perceptions, training, and available resources. Journal of Palliative Care, 23, 4450.Google Scholar
Toce, S. & Collins, M. A. (2003). The FOOTPRINTS model of pediatric palliative care. Journal of Palliative Medicine, 6, 9891000.Google Scholar
Ullrich, C. K. & Mayer, O. H. (2007). Assessment and management of fatigue and dyspnea in pediatric palliative care. Pediatric Clinics of North America, 54, 735–56, xi.Google Scholar
Vollenbroich, R., Duroux, A., Grasser, M., Brandstatter, M., Borasio, G. D. & Fuhrer, M. (2012). Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. Journal of Palliative Medicine, 15, 294300.CrossRefGoogle ScholarPubMed
WHO. (1998). WHO definition of palliative care.Google Scholar
Wolfe, J., Friebert, S. & Hilden, J. (2002). Caring for children with advanced cancer integrating pallaitive care. Pediatric Clinics of North America, 49, 10431062.Google Scholar
Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salem-Schatz, S., Emanuel, E. J. & Weeks, J. C. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342, 326–33.CrossRefGoogle ScholarPubMed
Zhukovsky, D. S., Herzog, C. E., Kaur, G., Palmer, J. L. & Bruera, E. (2009). The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. Journal of Palliative Medicine, 12, 343–9.CrossRefGoogle ScholarPubMed