The Needs of Children with Terminal Illness: A Qualitative Study

Abstract

ABSTRACT Purpose: The response of each child to terminal illness treatment is highly individual. This will certainly affect the level and type of perceived needs. This study is conducted to examine the needs of children with terminal illness from the perspective of nurses and parents. Method: A qualitative descriptive study was conducted in this research. The data collection process included in-depth interviews with eight nurses and eleven parents and focus group discussion with seven nurses. The sampling technique used purposive sampling. Data were analyzed using content analysis. Results: Based on the perspective of nurses and parents the needs of children with terminal illness in the biological aspect require the fulfilment of basic biological needs, a therapy programme with minimal side effects, intervention to improve comfort, optimal infection prevention, and on-going care. While in the psychological aspects, the children and parents need information, motivation, tools to overcome the anxiety of parents, parental involvement and education for children and families. In the social aspect there are the children’s need to play, need for school, and need for social support. In the spiritual aspect, the children need to be able to pray, receive spiritual guidance, and also to have spiritual guidance to prepare for death, and die with dignity. Conclusion: The needs of a child with terminal illness are complex and require special attention from the nurse. Therefore, nurses have a very important role to be able to comprehensively assess the needs of children with terminal illness in an effort to improve the quality of life of children.