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ORIGINAL ARTICLE
Year : 2016  |  Volume : 22  |  Issue : 3  |  Page : 317--325

Parent俟Q製 perspectives on the end-of-life care of their child with cancer: Indian perspective

Sneha Magatha Latha1, Julius Xavier Scott1, Satish Kumar2, Suresh M Kumar3, Lalitha Subramanian4, Aruna Rajendran1 
1 Department of Pediatrics, Division of Pediatric Hemato Oncology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India
2 Department of Pediatrics, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India
3 Department of Clinical Psychology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India
4 Department of Clinical Psychology, Karthikeyan Child Development Unit, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India

Correspondence Address:
Sneha Magatha Latha
Department of Pediatrics, Division of Pediatric Hemato Oncology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu
India

Context: Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent俟Q製 perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India. Aims: This study aimed to identify the symptoms (medical/social/emotional) that most concerned parents at the end-of-life care of their cancer child and to identify the strategies parents found to be helpful during this period. Settings and Design: We wanted to conduct this to focus on the parents perspectives on their cancer child俟Q製 end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child俟Q製 suffering. Materials and Methods: The study was conducted at Sri Ramachandra University, Chennai, a Tertiary Care Pediatric Hemato Oncology Unit. Parents who lost their child to cancer, treated in our institution were interviewed with a validated prepared questionnaire. Statistical analysis was performed using SAS statistical software package. Results: Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered. About 30% of the children had fear to be alone. About 50% of the children had the fear of death. Pain, fatigue, loss of appetite were the main distressful symptoms that these children suffered from parents俟Q perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful. Conclusion: The conclusion of the study was that at the end of their child俟Q製 life, parents value obtaining adequate information and communication, being physically present with the child, preferred adequate pain management, social support, and empathic relationships by the health staff members.


How to cite this article:
Latha SM, Scott JX, Kumar S, Kumar SM, Subramanian L, Rajendran A. Parent's perspectives on the end-of-life care of their child with cancer: Indian perspective.Indian J Palliat Care 2016;22:317-325


How to cite this URL:
Latha SM, Scott JX, Kumar S, Kumar SM, Subramanian L, Rajendran A. Parent's perspectives on the end-of-life care of their child with cancer: Indian perspective. Indian J Palliat Care [serial online] 2016 [cited 2021 May 14 ];22:317-325
Available from: https://www.jpalliativecare.com/article.asp?issn=0973-1075;year=2016;volume=22;issue=3;spage=317;epage=325;aulast=Latha;type=0