title: Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective.
abstract: BACKGROUND
  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's perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  We wanted to conduct this to focus on the parents perspectives on their cancer child's end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child's suffering.
  
  
  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  Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered.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' perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful.
  
  
  CONCLUSIONS
  The conclusion of the study was that at the end of their child's 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.
authors: Department of Pediatrics, Division of Pediatric Hemato Oncology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Sneha Magatha
authors: SM
authors: Latha
authors: Department of Pediatrics, Division of Pediatric Hemato Oncology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Julius Xavier
authors: JX
authors: Scott
authors: Department of Pediatrics, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Satish
authors: S
authors: Kumar
authors: Department of Clinical Psychology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Suresh M
authors: SM
authors: Kumar
authors: Department of Clinical Psychology, Karthikeyan Child Development Unit, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Lalitha
authors: L
authors: Subramanian
authors: Department of Pediatrics, Division of Pediatric Hemato Oncology, Sri Ramachandra Medical College and Research Institute, Porur, Chennai, Tamil Nadu, India.
authors: Aruna
authors: A
authors: Rajendran
keywords: End-of-life care; Parents perspectives; Pediatric malignancies