Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

BMC Research Notes

Dirk Reinhardt²  Max Geraedts³  Annette Sander²  Saskia Jünger¹  Nina Eulitz⁴  Kerstin Kremeike² 

[1] Department of Palliative Medicine, University Hospital of Bonn, Sigmund-Freud-Str. 25, 53127 Bonn, 53127, Germany;Department of Paediatric Haematology and Oncology, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, 30625, Germany;Institute for Health Systems Research, Witten/Herdecke University, Alfred-Herrhausen-Straße 50, 58448 Witten, 58448, Germany;Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V, Carl-Neuberg-Straße 1, 30625 Hannover, 30625, Germany

关键词: Prevalence;    Network;    Home care;    Paediatrician’s survey;    Palliative care;    Children;   

Others  :  1165730
DOI  :  10.1186/1756-0500-5-498

 received in 2012-03-16, accepted in 2012-09-01,  发布年份 2012

【 摘 要 】

Background

In 2007, the patient’s right to specialised palliative home care became law in Germany. However, childhood palliative care in territorial states with low patient numbers and long distances requires adapted models to ensure an area-wide maintenance. Actually, general paediatricians are the basic care providers for children and adolescents. They also provide home care. The aim of this study was to improve the knowledge about general paediatrician’s involvement in and contribution to palliative care in children.

Findings

To evaluate the current status of palliative home care provided by general paediatricians and their cooperation with other paediatric palliative care providers, a questionnaire survey was disseminated to general paediatricians in Lower Saxony, a German federal state with nearly eight million inhabitants and a predominantly rural infrastructure. Data analysis was descriptive.

One hundred forty one of 157 included general paediatricians completed the questionnaire (response rate: 89.8%). A total of 792 children and adolescents suffering from life-limiting conditions were cared for by these general paediatricians in 2008. Severe cerebral palsy was the most prevalent diagnosis. Eighty-nine per cent of the general paediatricians stated that they had professional experience with paediatric palliative care.

Collaboration of general paediatricians and other palliative care providers was stated as not well developed. The support by a specialised team including 24-hour on-call duty and the intensification of educational programs were emphasised.

Conclusions

The current regional infrastructure of palliative home care in Lower Saxony can benefit from the establishment of a coordinated network of palliative home care providers.

【 授权许可】

   
2012 Kremeike et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris PC, et al.: IMPaCCT: standards of paediatric palliative care. European Journal of Palliative Care 2007, 14(3):109-114.
• [2]Vickers J, Thompson A, Collins GS, Childs M, Hain R: Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group. J Clin Oncol 2007, 25(28):4472-4476.
• [3]Goldman A, Beardsmore S, Hunt J: Palliative care for children with cancer–home, hospital, or hospice? Arch Dis Child 1990, 65(6):641-643.
• [4]Brueckner T, Schumacher M, Schneider N: Palliative care for older people - exploring the views of doctors and nurses from different fields in Germany. BMC Palliat Care 2009, 8:7. BioMed Central Full Text
• [5]Gott M, Seymour J, Ingleton C, Gardiner C, Bellamy G: 'That's part of everybody's job': the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med 2012, 26(3):232-241.
• [6]Knapp CA, Madden VL, Curtis CM, Sloyer PJ, Huang IC, Thompson LA, et al.: Partners in care: together for kids: Florida's model of pediatric palliative care. J Palliat Med 2008, 11(9):1212-1220.
• [7]Jünger S, Pastrana T, Pestinger M, Kern M, Zernikow B, Radbruch L: Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts. BMC Palliat Care 2010, 9:10. BioMed Central Full Text
• [8]American Academy of Pediatrics: Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000, 106(2 Pt 1):351-357.
• [9]Work group of the National Hospice and Palliative Care Organization: A call for change: Recommendations to improve the care of children living with life-threatening conditions. 2001. Available at http://www.nhpco.org/files/public/ webcite ChiPPSCallforChange.pdf. Accessed 12/15, 2011.
• [10]Jünger S, Vedder AE, Milde S, Fischbach T, Zernikow B, Radbruch L: Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives. BMC Palliat Care 2010, 9:11. BioMed Central Full Text
• [11]Sheetz MJ, Bowman MA: Pediatric palliative care: an assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care. Am J Hosp Palliat Care 2008, 25(2):100-105. Apr-May.
• [12]Goldman A: ABC of palliative care. Special problems of children. BMJ 1998, 316(7124):49-52.
• [13]Lenton S, Stallard P, Lewis M, Mastroyannopoulou K: Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood. Child Care Health Dev 2001, 27(5):389-398.
• [14]Hynson JL, Gillis J, Collins JJ, Irving H, Trethewie SJ: The dying child: how is care different? Med J Aust 2003, 179(6 Suppl):S20-S22.
• [15]Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ: Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004, 114(5):1248-1252.
• [16]De Graves S, Aranda S: When a child cannot be cured - reflections of health professionals. Eur J Cancer Care (Engl) 2005, 14(2):132-140.
• [17]Friedrichsdorf SJ, Menke A, Brun S, Wamsler C, Zernikow B: Status Quo of Palliative Care in Pediatric Oncology - A Nationwide Survey in Germany. J Pain Symptom Manage 2005, 29(2):156-164.
• [18]Department of Health and Children and The Irish Hospice Foundation: A Palliative Care Needs Assessment for Children. Dublin: Stationery Office; 2005.
• [19]Association for Children with Life Threatening or Terminal Conditions and their Families and Royal College of Paediatrics and Child Health: A guide to the development of children's palliative care services. Bristol, London: ACT, RCPCH; 1997.
• [20]Hynson JL: The child's journey: Transition from health to ill-health. In Oxford Textbook of Palliative Care for children. Edited by Goldman A, Hain R, Liben S. New York: Oxford University Press; 2006:14-27.
• [21]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. Pediatrics 2008, 121(2):282-288.
• [22]Feeg VD, Elebiary H: Exploratory study on end-of-life issues: barriers to palliative care and advance directives. Am J Hosp Palliat Care 2005, 22(2):119-124.
• [23]Carroll JM, Santucci G, Kang TI, Feudtner C: Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. Am J Hosp Palliat Care 2007, 24(3):191-195. Jun-Jul.
• [24]Dokumentations-, Archivierungs-, Recherche- und Informationssystem der Kassenärztlichen Bundesvereinigung und der Kassenärztlichen Vereinigungen. Available at: http://daris.kbv.de/daris.asp webcite. Accessed 12/15, 2011.
• [25]Sepúlveda C, Marlin A, Yoshida T, Ullrich A: Palliative Care: the World Health Organization's global perspective. J Pain Symptom Manage 2002, 24(2):91-96.
• [26]Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD: Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics 2001, 107(6):E99.
• [27]Bona K, Bates J, Wolfe J: Massachusetts' pediatric palliative care network: successful implementation of a novel state-funded pediatric palliative care program. J Palliat Med 2011, 14(11):1217-1223.
• [28]Knapp C, Thompson L, Madden V, Shenkman E: Paediatricians' perceptions on referrals to paediatric palliative care. Palliat Med 2009, 23(5):418-424.
• [29]McCulloch R, Comac M, Craig F: Paediatric palliative care: coming of age in oncology? Eur J Cancer 2008, 44(8):1139-1145.
• [30]Lenton S, Goldman A, Eaton N, Southall D: Development and epidemiology. In Oxford Textbook of Palliative Care for children. Edited by Goldman A, Hain R, Liben S. New York: Oxford University Press; 2006:3-13.
• [31]Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al.: Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011, 127(6):1094-1101.
• [32]Hutchinson F, King N, Hain RD: Terminal care in paediatrics: where we are now. Postgrad Med J 2003, 79(936):566-568.
• [33]Schneider N, Mitchell GK, Murray SA: Palliative care in urgent need of recognition and development in general practice: the example of Germany. BMC Fam Pract 2010, 11:66. BioMed Central Full Text
• [34]Schrader SL, Nelson ML, Eidsness LM: Palliative care teams on the prairie: composition, perceived challenges & opportunities. S D Med 2007, 60(4):147-149. Apr;60.
• [35]Borgsteede SD, Deliens L, van der Wal G, Francke AL, Stalman WA, van Eijk JT: Interdisciplinary cooperation of GPs in palliative care at home: a nationwide survey in The Netherlands. Scand J Prim Health Care 2007, 25(4):226-231.
• [36]Toce S, Collins MA: The FOOTPRINTS model of pediatric palliative care. J Palliat Med 2003, 6(6):989-1000.
• [37]Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al.: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010, 363(8):733-742.
• [38]Craft A, Killen S: Palliative Care Services for Children and Young People in England. An Independent Review for the Secretary of State for Health. 2007.
• [39]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):526-536.
• [40]Schneider N, Engeser P, Behmann M, Kuhne F, Wiese B: Specialized outpatient palliative care. The expectations of general practitioners. Schmerz 2011, 25(2):168-173. Apr.
• [41]Schiffman JD, Chamberlain LJ, Palmer L, Contro N, Sourkes B, Sectish TC: Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med 2008, 11(2):164-170.
• [42]Kelley ML, Habjan S, Aegard J: Building capacity to provide palliative care in rural and remote communities: does education make a difference? J Palliat Care 2004, 20(4):308-315.
• [43]Drake R, Frost J, Collins JJ: The symptoms of dying children. J Pain Symptom Manage 2003, 26(1):594-603.
• [44]Zernikow B, Dietz B: Schmerzerkennung, -messung und -therapie bei Kindern mit kognitiver und körperlicher Behinderung. Neuropädiatrie in Klinik und Praxis 2003, 2:12-17.
• [45]Howard RF: Current status of pain management in children. JAMA 2003, 290(18):2464-2469.
• [46]Cassel JB, Webb-Wright J, Holmes J, Lyckholm L, Smith TJ: Clinical and financial impact of a palliative care program at a small rural hospital. J Palliat Med 2010, 13(11):1339-1343.
• [47]Masso M, Owen A: Linkage, coordination and integration: evidence from rural palliative care. Aust J Rural Health 2009, 17(5):263-267.