A consensus for change: Parent and professional perspectives on care for children at the end-of-life

Comprehensive Child and Adolescent Nursing

Volumn 36, Issue 1-2, 2013, Pages 70-87

  Price, Jayne ^a   Jordan, Joanne ^b   Prior, Lindsay ^a  

^a QUEEN'S UNIVERSITY BELFAST   (United Kingdom)

^b Belfast ^*  (United Kingdom)

Author keywords

Children; End of life; Parents; Professionals; Service development

Indexed keywords

EID: 84878844163     PISSN: 01460862     EISSN: 1521043X     Source Type: Journal    
DOI: 10.3109/01460862.2013.779765     Document Type: Article

References (53)

1. Association for Children with Life Threatening or Terminal Conditions (ACT) The Royal College of Paediatrics and Child Health (RCPCH).(2003). A guide to the development of children's paediatric Services. 2nd edn. Bristol: ACT.
2. Association for Children's Palliative Care (ACT). (2009). A guide to the development of children's paediatric services. 3rd edn. Bristol: ACT.
3. Baverstock, A. & Finlay, F. (2008). What can we learn from the experiences of consultants around the time of a child's death? Child Care, Health and Development, 34, 732-739.
4. Carney, O., McIntosh, J. & Worth, A. (1996). The use of nominal group technique in research with community nurses. Journal of Advanced Nursing, 23, 1024-1029.
5. Clarke, J. & Quinn, S. (2007). Professional carers' experiences of providing a pediatric palliative care service in Ireland. Qualitative Health Research, 17, 1219.
6. Contro, N., Larson, J., Schofield, S., Sourkes, B. & Cohen, H. (2002). Family perspectives on the quality of pediatric palliative care. Archives of Pediatrics Adolescent Medicine, 156, 14-19.
7. Contro, N., Larson, J., Schofield, S., Sourkes, B. & Cohen, H. (2004). Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics, 114, 1248-1252.
8. Costello, J. & Tinder-Brook, A. (2000). Children's nurses' experiences of caring for dying children in hospital. Peadiatric Nursing, 12(6), 28-32.
9. Craft, A. & Killen, S. (2007). Palliative care services for children and young people in England. An independent review for the Secretary of State for Health. Department of Health Publications, London. Available from www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyandGuidance/DH-074459
10. Dangel, T. (2002). The status of Pediatric Palliaitve Care in Europe. Journal of Pain and Symptom Management, 24, 2,160-165.
11. Davies, B., Sehrig, S.A., Partridge, J.C., Cooper, B., Hughes, A., Philip, J.C., Kramer, R.F., Amidi-Nouri, A. (2008). Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics, 121, 282-288.
12. D'Agostino, N.M., Romalis, D.B., Jovcevska, V. & Barrera, M. (2008). Bereaved parents'perspectives on their needs. Palliative and Supportive Care, 6, 33-41.
13. Department of Health (DH). (2008). Better lives: better care. Improving outcomes and experiences for children, young people and their families living with life-limiting and life-threatening conditions. London: Department of Health Publications.
14. Department of Health for Children (DoHC). (2009). Palliative care for children with lifelimiting conditions in Ireland-a national policy. An Rionn Slainte Agus Leanai.
15. Dublin. Dewar, A., White, M., Santiago, T., Posade, M.D., Dillon, W. (2003). Using nominal group technique to assess chronic pain, patients' perceived challenges and needs in a community health region. Health Expectations, 6, 44-52.
16. Fanos, J. (2007). Coming through the fog, coming over the moors: the impact on pediatric oncologists of caring for seriously ill children. Journal of Cancer Education, 22, 19-123.
17. Fraser, L., Miller, M., Hain, R., Norman, P., Aldridge, J., McKinney, A. & Parslow, P, (2012). Rising national prevalence of life-limiting conditions in children in England. Pediatrics on line March 12 2012.
18. DOI:10. 1542/PEDS. 2011-2846.
19. Gallagher, M., Hares, T., Spencer, J., Bradshaw, C. & Webb, I. (1993). The Nominal Group Technique: a research tool for general practice. Family Practice, 10, 76-81.
20. Gibson, F. & Soanes, L. (2000). The development of clinical competencies for use on a paediatric oncology nursing course using a nominal group technique. Journal of Clinical Nursing, 9, 459-469.
21. Goldman, A., Beardsmore, S. & Hunt, J. (1990). Palliative care for children with cancer-home, hospital or hospice? Archives of Disease in Childhood, 65, 641-643.
22. Goldman, A., Hewitt, M., Collins, G., Childs, M. & Hain, R. (2006). Symptoms in children/young people with progressive cancer: UKCCSG/Paediatric Oncology Nurses Forum Survey. Pediatrics, 117, 1179-1186.
23. Graham-Pole, J., Wass, H., Eyberg, S. & Chu, L. (1989). Communication with dying children and their siblings: a retrospective analysis. Death Studies, 13, 1-16.
24. Green, J. & Thorogood, N. (2009). Qualitative methods for health research. 2nd edn. London: Sage.
25. Hannan, J. & Gibson, F. (2005). Advanced cancer in children; how parents decide final place of care for their dying child. International of palliative nursing, 11, 284-29.
26. Hayout, I., Krulik, T. & Tamar, R. (1999). A test of parenthood; Dilemmas of parents of terminally ill adolescents. Cancer Nursing, 22(1), 71-79.
27. Heller, K.S. & Solomon M.Z. (2005). Continuity of care and caring: what matters to parents of children with life-threatening conditions. Journal of Pediatric Nursing, 20, 335-346.
28. Institute of Medicine. (2002). When Children die: improving palliative and end-of-life care for children and families. Washington DC: National Academy Press.
29. Jones, B.L. (2006). Companionship, control, & compassion: a social work perspective on the needs of children with cancer and their families at the end-of-life. Journal of Palliative Medicine, 9, 774-788.
30. Kitzinger, J. (1995). Qualitative research: introducing focus groups. British Medical Journal, 311, 299-302.
31. 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, 9152-9171.
32. Liben, S., Papadatou, D. & Wolfe, J. (2008). Paediatric palliative care: challenges and emerging ideas. Lancet, 371, 852-864.
33. Lindenfelser, K.J., Grocke, D. & McFerran, K. (2008). Bereaved parents' experiences of music therapy with their terminally ill child. Journal of Music Therapy, 45, 330-348.
34. Mac Phail, A. (2001). Nominal Group Technique: a useful method for working with young people. British Education Research Journal, 27, 161-170.
35. McCluggage, H.L. & Elborn, J.S. (2006). Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff. International Journal of Palliative Nursing, 12, 254-258.
36. McNeilly, P. & Price, J. (2007). Interdisciplinary team working in Paediatric Palliative Care. European Journal of Palliative Care, 14, 64-67.
37. Murphy, M.K., Black, N.A., Lamping, D.L., McKee, C.M., Sanderson, C.F., Askham, J. & Marteau, T. (1989). Consensus development methods and their use in clinical guidelines development. Health Technology Assessment, 2, 1-88.
38. Papadatou, D. (1997). Training health professionals in caring for dying children and grieving families. Death Studies, 21(6), 575-600.
39. Papadatou, D., Bellali, T., Papazoglou, I. & Petraki, D. (2002). Greek nurse and physician grief as a result of caring for children dying of cancer. Pedaitric Nursing, 28, 345-364.
40. Papadatou, D., Martinson, M. & Man Chung, P. (2001). Caring for dying children: a comparative study of nurses' experiences in Greece and Hong Kong. Cancer Nursing, 24, 402-412.
41. Potter, M., Gordon, S. & Hamer, P. (2004). The Nominal Group Technique: a consensus methodology in physiotherapy research. NZ Journal of Physiotherapy, 32, 126-130.
42. Price, J., Jordan, J., Prior, L., & Parkes, J. (2011). Living through the death of a child: a qualitative study of bereaved parents' experiences. International Journal of Nursing Studies, doi:10.1016/j.ijnurstu.2011.05.006.
43. Price, J., Jordan, J., Prior, L., & Parkes, J. (2012). Comparing needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study, British Medical Journal Supportive and Palliative Care, 2, 127-132.
44. doi:10.1136/bmjspcare-2011-000104.
45. Sink, D.S. (1983). Using the Nominal Group Technique effectively. National Productivity Review, Spring, 173-184.
46. Sourkes, B., Frankel, L., Brown, M., Contro, N., Bentz, W., Case, C., Sunde, C., et al. (2005). Food, toys, and love: pediatric palliative care. Current Problems Pediatric Adolescent Health Care, 35, 350-386.
47. Theunissen, J.M.J., Hoogerbrugge, P. M., van Acterberg, T., Prins, J.B., Vemooij-Dassen, M.J. & van den Ende, C.H. (2007). Symptoms in the palliative phase of children with cancer. Pediatric Blood Cancer, 49, 160-165.
48. Together for Short Lives. (2012). Care Provision available at http://www.togetherforshortlives. org.uk/professionals/care-provision.
49. Wheeler, J. (2001). Parental bereavement: the crisis of meaning. Death Studies, 25, 51-66.
50. Wolfe, J., Grier, H.E., Klar, N., Levin, S.B., Ellenbogen, J.M., Salem-Schatz, S., Weeks, J.C., et al. (2000). Symptoms and suffering at the end-of-life in children with cancer. Symptoms and suffering at the end-of-life in children with cancer. New England Journal of Medicine, 342, 326-333.
51. Wolfe, J., Hammel, J.F., Edwards, K.E., Duncan, J., Comeau, M., Breyer, J., Weeks, J.C., et al. (2008). Easing of suffering in children with cancer at the end-of-life: is care changing? Journal of Clinical Oncology, 10, 1717-1723.
52. Wood, F., Simpson, S., Barnes, E. & Hain, R. (2010). Disease trajectories in pediatric palliative care. Palliative Medicine, 24, 796-806.
53. Wooley, H., Stein, A., Forrest, G.C. & Baum, J.D. (1989). Staff stress and job satisfaction at a children's hospice. Archive of Diseases in Children, 64, 114-118.