ABSTRACTLiving with quality is one of the key factors to full health. People affected by chronic diseases today have a longer survival with major advances in treatments. Adherence to treatment is important to achieve the quality of life of people living with chronic diseases. Adolescents are vulnerable on this issue, since they need someone to take care of the paper along with it. The caregiver faces the challenge of care facing daily difficulties, fears, anxieties, experiences that are not always regarded. This study aims to evaluate quantitatively the adherence of two chronic diseases (HIV / AIDS and cystic fibrosis) of adolescents followed at the Pediatric Clinic of the HC - UNICAMP; assess the quality of life of this population, using standardized and validated scale; assess the degree of anxiety and depression in adolescents using standardized and validated scale; assess the adolescents' perceptions before the support you receive from your family, scale using standardized and validated instrument; assess the ability of patients and caregivers in coping with the limitations and challenges linked to chronic disease (resilience), using standardized and validated scale, as well as the personality characteristics of caregivers of adolescents with chronic disease using a standardized and validated. The membership of both group (HIV and cystic fibrosis) will be assessed by self-report (responsible for the administration of medication) about taking the medication within 7 days and 24 hours prior to the interview and consultation with dispensing records Pharmacy (SICLOM and high-cost). With the adolescents will be a semi-structured interview to obtain data on demographic, psychosocial and clinical, application of Wagnild Young resilience scale, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) , Perception Inventory of Family Support (PIFS) and the Brazilian version of the Youth Quality of Life Instrument-Research (YQOL-R). For caregivers will apply the same level of resilience, a Personality Inventory Revised (NEO-PI-R) and the short version in Portuguese of the World Health Organization Quality of Life (WHOQOL-Bref). The interviews will be conducted in outpatient setting, after the consent of those responsible, in a proper room, before or after the medical appointment scheduled in advance by the care team to monitor this population. The time of the questionnaires is approximately 2 hours (adding teenager and caregiver). It is hoped that the findings will contribute to better know the degree of adherence and quality of life of adolescents with chronic diseases (HIV / AIDS and cystic fibrosis) followed at the Outpatient pediatric HC - UNICAMP analyzing the characteristics of patients and carers affected by them.
News published in Agência FAPESP Newsletter about the scholarship: