scholarly journals “You told me it was too late”: An autoethnographic reflection on (not) knowing and bereavement

2021 ◽  
Author(s):  
Nicole Dulysh

A parent diagnosed with terminal cancer is focused on their own struggle with life and death. They often do not have the mental capacity to think rationally about what is in the best interest of their child at this time. Without a doubt, the grieving process of a child 1who is informed about their parent’s diagnosis will have a different experience than a child who is not informed. Following on an autoethnographic approach I will revisit my past experience of my mom’s diagnosis with lung cancer and my father’s diagnosis of a cancerous tumor on his vocal cords as I share, explore, and reflect upon my involvement in both matters. These experiences will be shared along with the six stages of grief by Elisabeth Kübler-Ross and David Kessler as I provide a deeper understanding of how a child being informed or uninformed throughout the diagnosis can impact their feelings of guilt and sorrows leading up to death. Keywords: Palliative care, Cancer, Children, Parental Cancer, Communication, Relationship, Behaviour

2021 ◽  
Author(s):  
Nicole Dulysh

A parent diagnosed with terminal cancer is focused on their own struggle with life and death. They often do not have the mental capacity to think rationally about what is in the best interest of their child at this time. Without a doubt, the grieving process of a child 1who is informed about their parent’s diagnosis will have a different experience than a child who is not informed. Following on an autoethnographic approach I will revisit my past experience of my mom’s diagnosis with lung cancer and my father’s diagnosis of a cancerous tumor on his vocal cords as I share, explore, and reflect upon my involvement in both matters. These experiences will be shared along with the six stages of grief by Elisabeth Kübler-Ross and David Kessler as I provide a deeper understanding of how a child being informed or uninformed throughout the diagnosis can impact their feelings of guilt and sorrows leading up to death. Keywords: Palliative care, Cancer, Children, Parental Cancer, Communication, Relationship, Behaviour


2020 ◽  
Vol 34 (4) ◽  
pp. 170-170
Author(s):  
Pooja Kumar ◽  
Maureen Saphire ◽  
Madison Grogan ◽  
Jason Benedict ◽  
Sarah Janse, Julia Agne ◽  
...  

2009 ◽  
Vol 27 (1) ◽  
pp. 70-77 ◽  
Author(s):  
Moyra E. Mills ◽  
Liam J. Murray ◽  
Brian T. Johnston ◽  
Chris Cardwell ◽  
Michael Donnelly

Purpose To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients. Patients and Methods In a pragmatic randomized controlled trial, 115 patients with inoperable lung cancer were randomly assigned to receive either standard care or a structured QOL diary (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the related lung cancer module LC13) that they completed at home each week for 16 weeks. Patients were encouraged to share the QOL information with health professionals involved in their care. Changes in QOL over time (measured by the Functional Assessment of Cancer Therapy–Lung questionnaire and the Palliative Care Quality of Life Index), discussion of patient problems, and satisfaction with communication and general care were assessed at baseline and at 2 and 4 months after baseline. Results Analysis of QOL indicated a small but consistent difference between patients in the diary group and the standard care group. The diary group had a poorer QOL in many domains. Two different QOL summary scores (total and overall QOL) indicated a statistically significant between-group difference. No effects were found in relation to satisfaction with care, communication, or the discussion of patient problems. Conclusion The regular completion of a QOL questionnaire without appropriate feedback to health care professionals and without the provision of appropriate support may have a negative impact on inoperable lung cancer patients. Further research should focus on identifying features such as feedback loops that are required for the successful and meaningful use of QOL questionnaires in routine patient care.


2010 ◽  
Vol 19 (4) ◽  
pp. 467-473 ◽  
Author(s):  
Ryuya Yamanaka ◽  
Hatsuyo Koga ◽  
Yousuke Yamamoto ◽  
Shinichi Yamada ◽  
Tomomi Sano ◽  
...  

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