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Praktische en sociale ondersteuning


  1. National Institute for Health and Care Excellence. End of life care for infants, children and young people with life-limiting conditions: planning and management. [Internet]. London: NICE; 2016 [cited 2021 March 1]. Available from:
  2. Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. J Perinatol. 2007;27(8):510-6.
  3. Cadell S, Kennedy K, Hemsworth D. Informing social work practice through research with parent caregivers of a child with a life-limiting illness. J Soc Work End Life Palliat Care. 2012;8(4):356-81.
  4. Champagne M, Mongeau S. Effects of respite care services in a children's hospice: the parents' point of view. J Palliat Care. 2012;28(4):245-51.
  5. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156(1):14-9.
  6. Contro N, Sourkes BM. Opportunities for quality improvement in bereavement care at a children's hospital: assessment of interdisciplinary staff perspectives. J Palliat Care. 2012;28(1):28-35.
  7. Davies B, Steele R, Collins JB, Cook K, Smith S. The impact on families of respite care in a children's hospice program. J Palliat Care. 2004;20(4):277-86.
  8. Davies H. Living with dying: families coping with a child who has a neurodegenerative genetic disorder. Axone. 1996;18(2):38-44.
  9. deCinque N, Monterosso L, Dadd G, Sidhu R, Macpherson R, Aoun S. Bereavement support for families following the death of a child from cancer: experience of bereaved parents. J Psychosoc Oncol. 2006;24(2):65-83.
  10. Eaton N. 'I don't know how we coped before': a study of respite care for children in the home and hospice. J Clin Nurs. 2008;17(23):3196-204.
  11. Einaudi MA, Le Coz P, Malzac P, Michel F, D’Ercole C, Gire C. Parental experience following perinatal death: exploring the issues to make progress. European Journal of Obstetrics & Gynecology and Reproductive Biology. 2010;151(2):143-8.
  12. Forrester L. Bereaved parents' experiences of the use of 'cold bedrooms' following the death of their child. Int J Palliat Nurs. 2008;14(12):578-85.
  13. Grinyer A, Payne S, Barbarachild Z. Issues of power, control and choice in children's hospice respite care services: a qualitative study. Int J Palliat Nurs. 2010;16(10):505-10.
  14. Jennings V, Nicholl H. Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition. Int J Palliat Nurs. 2014;20(4):173-8.
  15. Konrad SC. What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega (Westport). 2007;55(2):117-30.
  16. Malcolm C, Forbat L, Knighting K, Kearney N. Exploring the experiences and perspectives of families using a children’s hospice and professionals providing hospice care to identify future research priorities for children’s hospice care. Palliative Medicine. 2008;22(8):921-8.
  17. Maynard L, Rennie T, Shirtliffe J, Vickers D. Seeking and using families' views to shape children's hospice services. Int J Palliat Nurs. 2005;11(12):624-30.
  18. Monterosso L, Kristjanson LJ, Aoun S, Phillips MB. Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service. Palliat Med. 2007;21(8):689-96.
  19. Price J, Jordan J, Prior L. A consensus for change: parent and professional perspectives on care for children at the end-of-life. Issues Compr Pediatr Nurs. 2013;36(1-2):70-87.
  20. Remedios C, Willenberg L, Zordan R, Murphy A, Hessel G, Philip J. A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliat Med. 2015;29(3):223-30.
  21. Robert R, Zhukovsky DS, Mauricio R, Gilmore K, Morrison S, Palos GR. Bereaved parents' perspectives on pediatric palliative care. J Soc Work End Life Palliat Care. 2012;8(4):316-38.
  22. Steele R, Derman S, Cadell S, Davies B, Siden H, Straatman L. Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study. Int J Palliat Nurs. 2008;14(6):287-95.
  23. Weidner NJ, Cameron M, Lee RC, McBride J, Mathias EJ, Byczkowski TL. End-of-life care for the dying child: what matters most to parents. J Palliat Care. 2011;27(4):279-86.