Adherrence process and affecting factors to home oral chemotherapy i̇n childhood acute lymphoblastic leukemia

Oral chemotherapeutic drugs are used during the treatment of acute lymphoblastic leukemia. During this period in which the treatment is carried out at home, various problems may arise due to the increased responsibilities of caregivers in drug applications. Purpose: The aim of this study was investigate the adaptation process to oral chemotherapy in childhood ALL patients and the problems and their causes in the light of the experiences of caregivers. Methods: This study was carried out in the phenomenology pattern which is one of the qualitative research methods. The research was conducted in the Hematology Policlinic of Dokuz Eylül University Nevvar Salih İşgören Children's Hospital between September 2018 and March 2019. The study was conducted with the voluntary participation of caregivers during the maintenance period of ALL treatment. In our study, descriptive findings were collected by sociodemographic forms of the sick child and the participant and means of the drug notification form. Ten caregiver interviews were conducted by face-to-face interview technique under the guidance of a semi-structured interview form prepared by the researcher with expert opinion. A voice recorder was used during the interviews. The sample was expanded until data saturation was achieved. After analyzing the sound recordings, thematic coding was performed. Codes were classified by the researcher and appropriate themes and sub-themes were created. Qualitative data obtained from the interview form were analyzed using Maxqda software and expert opinion was obtained to ensure the reliability of the research. Results: The data obtained were classified under six main themes. Although the maintenance of the treatment with oral medication at home during the maintenance period is often described as promising and positive, the necessity of proper and regular application of the drugs leads to increased responsibilities of caregivers. In this period, caregivers mostly have difficulties in preparation of drugs, compliance with drug hours, drug storage, knowing drug side effects, paying attention to drug doses, managing drug wastes, and drinking difficulties. In order to cope with the difficulties of drinking drugs, methods such as crushing drugs, adding them to foods, drinking drugs through play, giving time to the child and explaining to the child are used. During this period, negative feelings such as feeling guilty may occur due to the administration of chemotherapeutic drugs by caregivers. It was seen that caregivers lack information about the properties of drugs. It is important that a caregiver expresses that he is using unnecessary antibiotics, considering the risk of infecting his child. Adherrence was affected by many factors. It was determined that families can adapt to the process with the necessary initiatives specific to age groups and individuals. Conclusions: During the maintenance, in addition to the positive feelings experienced due to the fact that the treatment can be carried out at home, increasing responsibilities can cause difficulties for caregivers. Adopting a family-centered nursing approach in order for caregivers to pass the maintenance period smoothly, Including drug information to be used in maintenance period in trainings, recommending appropriate interventions to the child's age group for the difficulties of drinking the drug, Discharge trainings should be started from the time of hospitalization. Keywords; Acute Lymphoblastic Leukemia; child; adaptation period; oral chemotherapy