The information needs of adolescent patients and their parents to inpatient treatment in pediatric oncology-hematology

Abstract

Background. High importance of problem of patient’s informing, especially in a question of informational wants, is connected with influence of expression of disease and treatment on observance of medical recommendations. Discussions on a problem of information disclosure both for parents/caregivers and patients (according theirs age features) are very important topic nowadays. Results of our previous study on information disclosure agreement between parents and physicians showed some distrust and difference in opinion between physicians and parents/caregivers. These results showed actuality of study of informational wants of children. Adolescents were chosen for this study due to permission for informed consent beginning from 15 years old. Materials and methods. A special questionnaires for revelation of wants for information, expected and real ways of informing and information demands (form, volume, contents, sources, participants of informational process) were created by authors with the help of prof Elena V. Polevichenko for adolescents and theirs parents. Study respondents: 1. Parents of adolescents (n = 54, age – 32–63 years old; М = 43,7; SD = 9,1; 53 females and 1 male); 2) Adolescents (n = 49; 14–18 years old; 16,4; SD = 2; 23 females and 26 males). Results. Article showed high level of satisfaction of informing both for parents and adolescents. Parent’s condition connected with theirs own informing which significantly improves theirs satisfaction of informing of adolescents and allows them to ask physician to give information to theirs children. From parent’s point of view it’s important to receive information from physicians in proper time, regularly, clarify but in step-by-step regimen, in doses and in the conditions of privacy and support. Parent’s wants of adolescent’s informing are ambiguous and discrepant. From one side, fullness of informing of patients on parent’s opinion is connected with the age – they say about “child needs” beginning from the age of 13 years old. From another side parent’s of adolescents (after 15 year old) thinks that full informing of theirs children must be limited. In majority of cases parents are ready to inform children on diagnosis but don’t rule out to say about length and heaviness of treatment, side effects. In majority of cases adolescents showed active interest for disease and treatment, as well as good contact with physician setting up. In contrast with parents they would like to have full information in majority of cases. The most frequent questions for adolescents are the origin of disease and personal hygiene. Satisfaction of adolescents of good contact and permanent interaction with physician is significantly correlated with theirs readiness for receiving of information and active participation in treatment. Conclusion. The most complicated topics for discussion with parents and adolescents are not diagnosis, but information on legth and side effects of therapy. Adolescents from theirs side declaring the readiness for bigger participation in receiving of information on treatment and have less level of requirements for intermediaries (parents/psychologists) then adults thinks. Complex approach for studying of information needs both parents and children allows to give physicians more exact and detailed recommendations for informing according the age features.