To lose a child: a study of the experience of losing one's child to cancer

• Grant number: 11/07010-6
• Support Opportunities: Regular Research Grants
• Start date: July 01, 2011
• End date: December 31, 2014
• Field of knowledge: Health Sciences - Medicine - Maternal and Child Health
• Principal Investigator: Andréa Yamaguchi Kurashima
• Grantee: Andréa Yamaguchi Kurashima
• Host Institution: A C Camargo Cancer Center. Fundação Antonio Prudente (FAP). São Paulo , SP, Brazil
• Associated researchers: Elizabeth Nunes de Barros ; Luís Henrique Toshihiro Sakamoto ; Maria Teresa Duarte Pereira da Cruz Lourenço

Abstract

To live after the death of a child is one of the most painful experiences known to mankind. The terminal phase of the illness, as well as how the child dies may play a critical role in the lives of parents and siblings, and influence the experience of acute and long term bereavement and grief. The reactions of parents to the loss of a child can occur in different ways at any time and health care professionals must be prepared to deal with this situation. From a population study (Sweden), with the elaboration of a questionnaire "To lose a child, researchers have demonstrated that psychological complications can strognly affect the lives and welfare of parents and relatives of the child, and these parents showed an increased risk for symptoms of anxiety and depression in the first 4-6 years after the death of their child. This study aims are: to characterize the parents' experience during the loss of the child/adolescent, specially on regards of care and communication, through the questionnaire "To lose a child"; to identify the psychological morbidity (anxiety and depression) of bereaved parents who have lost a child to cancer and to describe the intensity of parents´ grief after the loss of a child for pediatric cancer using Texas Revised Inventory of Grief (TRIG). This is a doctoral study, with descriptive cross-sectional approach conducted with a convenience sample. This study was approved by the research ethics committee of the main institution and is in the submission process in the associate institutions. Besides the translation and cultural adaptation, qualitative interviews will be conducted to evaluate the content of the questionnaire. Then, the questionnaire will be tested with other instruments in a larger sample for quantitative analysis and validation. Parents who lost their child to cancer will be included, from 5 Brazilian cancer centers. For concurrent validity, the items will be compared for the section that assesses mental health with CES-D and STAI-T. (Pearson or Spearman correlation test). We expect to perform an inferential analysis of the risks of psychological morbidity, according to the sample obtained: possible associations between psychological morbidity (anxiety/depression), grief and social-demographic variables (gender, age, symptoms/suffering and communication ) through the chi-square test (Ç2) and risk measurement by Odds ratio (OR), considering p <0.05 as significant. The data will be compared with the original study conducted in Sweden with subjects in the same situation of mourning (study conducted by the co-supervisor of this project) - author of the target instrument ("To Lose a Child") (AU)