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Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss

(2011) SUPPORTIVE CARE IN CANCER. 19(1). p.27-35
Author
Organization
Abstract
For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility. A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer. Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood. For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.
Keywords
PERSPECTIVES, QUALITY, DECISIONS, PEDIATRIC PALLIATIVE CARE, End-of-life care, Quality of life, Parenting, Decision-making, Palliative care, Neoplasm, SYMPTOMS, LEUKEMIA, IMPACT, NEEDS

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Citation

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MLA
Kars, Marijke C, Maria Grypdonck, Maria C de Korte-Verhoef, et al. “Parental Experience at the End-of-life in Children with Cancer: ‘Preservation’ and ‘Letting Go’ in Relation to Loss.” SUPPORTIVE CARE IN CANCER 19.1 (2011): 27–35. Print.
APA
Kars, M. C., Grypdonck, M., de Korte-Verhoef, M. C., Kamps, W. A., Meijer-van den Bergh, E. M., Verkerk, M. A., & van Delden, J. J. (2011). Parental experience at the end-of-life in children with cancer: “preservation” and “letting go” in relation to loss. SUPPORTIVE CARE IN CANCER, 19(1), 27–35.
Chicago author-date
Kars, Marijke C, Maria Grypdonck, Maria C de Korte-Verhoef, Willem A Kamps, Esther MM Meijer-van den Bergh, Marian A Verkerk, and Johannes JM van Delden. 2011. “Parental Experience at the End-of-life in Children with Cancer: ‘Preservation’ and ‘Letting Go’ in Relation to Loss.” Supportive Care in Cancer 19 (1): 27–35.
Chicago author-date (all authors)
Kars, Marijke C, Maria Grypdonck, Maria C de Korte-Verhoef, Willem A Kamps, Esther MM Meijer-van den Bergh, Marian A Verkerk, and Johannes JM van Delden. 2011. “Parental Experience at the End-of-life in Children with Cancer: ‘Preservation’ and ‘Letting Go’ in Relation to Loss.” Supportive Care in Cancer 19 (1): 27–35.
Vancouver
1.
Kars MC, Grypdonck M, de Korte-Verhoef MC, Kamps WA, Meijer-van den Bergh EM, Verkerk MA, et al. Parental experience at the end-of-life in children with cancer: “preservation” and “letting go” in relation to loss. SUPPORTIVE CARE IN CANCER. 2011;19(1):27–35.
IEEE
[1]
M. C. Kars et al., “Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss,” SUPPORTIVE CARE IN CANCER, vol. 19, no. 1, pp. 27–35, 2011.
@article{3127841,
  abstract     = {For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility. 
A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer. 
Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood. 
For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.},
  author       = {Kars, Marijke C and Grypdonck, Maria and de Korte-Verhoef, Maria C and Kamps, Willem A and Meijer-van den Bergh, Esther MM and Verkerk, Marian A and van Delden, Johannes JM},
  issn         = {0941-4355},
  journal      = {SUPPORTIVE CARE IN CANCER},
  keywords     = {PERSPECTIVES,QUALITY,DECISIONS,PEDIATRIC PALLIATIVE CARE,End-of-life care,Quality of life,Parenting,Decision-making,Palliative care,Neoplasm,SYMPTOMS,LEUKEMIA,IMPACT,NEEDS},
  language     = {eng},
  number       = {1},
  pages        = {27--35},
  title        = {Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss},
  url          = {http://dx.doi.org/10.1007/s00520-009-0785-1},
  volume       = {19},
  year         = {2011},
}

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