Should a teenager know about his/her terminal illness? Parents’ experiences and attitudes
Review
Background. Terminal illness and death are the themes that are still being tried to avoid in medical specialists and patients coversations in Lithuania. Especially if such an illness means child's health condition. In the case of teenagers, the issue of "teeling-or-not-telling" becomes especially ambivalent.
Objective – to reveal parents', whose children were (or still are) ill with oncological illness, experiences and attitudes towards informing a child about his/her health condition.
Materials and methods. The study sample included six families – six mothers and one father (one family was represented by both parents). All children were diagnosed and ill with oncological life-limiting disease at age 12-18. All teenagers got to know about their life-limiting disease accidentally. At the moment of research period five children were dead and one was alive and taken care of by his parents. The study was designed as a qualitative semistructured interview study. Data were analysed using inductive qualitative content analysis: categories and themes were developed.
Results. Both parents and specialists tried to withhold the reality from the child. Children got to know their health condition and prognosis accidentally. Open conversations brought family members closer and were expressed as a positive experience. On the other hand, the start of open communication was extremely difficult and painful for parents. Almost all parents believed in necessity of giving teenager a hope to be recovered. Some parents wanted hospital professionals (psychologist) to help when giving the diagnosis for the child and in future communication. Some parents believed they have to talk to their children themselves.
Conclusion. None of specialists at hospital helped both parents and ill teenagers to deal with the message of terminal illness and feelings leading this message. Parents felt alone, confused and upset. Parents' decisions about open communication with the child were based on their family culture and society attitudes.
Conclusion. None of specialists at hospital helped both parents and ill teenagers to deal with the message of terminal illness and feelings leading this message. Parents felt alone, confused and upset. Parents' decisions about open communication with the child were based on their family culture and society attitudes.
