Viviane Ziebell de Oliveira

A doença crônica orgânica na infância e as práticas educativas maternas

Estudos apontam que a presenca de doenca cronica orgânica na infância pode se constituir num importante fator de mediacao da qualidade da interacao mae-crianca. Entretanto, poucos estudos investigam as praticas educativas maternas em criancas portadoras de doenca cronica. Os cuidados diarios exigidos pelo tratamento da enfermidade, bem como a fragilidade fisica e emocional da crianca podem afetar as praticas educativas maternas. Participaram do estudo 40 maes, metade das quais eram maes de criancas portadoras de doenca cronica orgânica e as demais de criancas sem doenca cronica. As criancas eram de ambos os sexos e tinham entre 03 e 05 anos de idade. Os participantes foram recrutados em hospitais e pre-escolas publicas. Uma entrevista semi-estruturada foi utilizada para se investigar as praticas educativas maternas, examinadas atraves de analise de conteudo. Os resultados revelaram uma tendencia marginalmente significativa no grupo com doenca cronica a utilizar um numero menor de praticas coercitivas. Alem disso, houve uma diferenca significativa entre os grupos quanto ao uso de punicao fisica e privacao/castigo, indicando que as maes de criancas com doenca cronica utilizaram com menor frequencia este tipo de pratica. Os resultados apoiam a expectativa inicial de que as maes de criancas com doenca cronica seriam menos coercitivas quando comparadas as maes do outro grupo.

Comunicação médico-paciente e adesão ao tratamento em adolescentes portadores de doenças orgânicas crônicas

Doctor-patient communication and adhesion to treatment in adolescents with chronic organic diseases . The evolution of Medicine, associated to appropriate adhesion to treatment, has been increasing the life expectancy of children with chronic organic diseases, until adolescence and adult life. This study focalizes the implications of doctor-patient communication in the adhesion to treatment. Eight boys and ten girls, between 12 and 18 years of age, with chronic organic diseases since childhood were interviewed. The interviews, following a flexible guideline, were recorded, transcribed, and submitted to qualitative analysis. Patients assisted in specific aid programs presented better communication with their doctors and greater adhesion to treatment. The adolescents identified the mother as mediator in the communication with the doctor, since the diagnosis, and they located themselves as spectators of this communication. It was interpreted that such situation does not favor the psychological development of these adolescents, and it impedes that they assume the disease and treatment. The creation of programs and procedures that include the pediatric patient formally in the doctor’s communication with the mother is suggested.

Adesão ao tratamento em pacientes com fibrose cística

OBJECTIVES To evaluate the self-reported degree of adherence to treatment in patients with cystic fibrosis (CF), investigating associations with characteristics of the disease and with the degree of adherence perceived by health professionals. METHODS This was a prospective, cross-sectional study involving patients with CF monitored at a Program for Adults with CF. The degree of adherence was evaluated using a questionnaire. Patients were divided into two groups: greater degree of adherence and moderate/poor degree of adherence. Clinical data, Shwachman-Kulczycki clinical score, Brasfield radiographic score and spirometry data were obtained for all patients. RESULTS Out of 38 patients studied, 31 (81.6%) were classified as presenting a greater degree of adherence and 7 (18.4%) as presenting a moderate/poor degree of adherence. The self-reported patient adherence score correlated with the clinical score (r = -0.36, p = 0.028). The self-reported patient adherence score (median = 0.79) was higher than that perceived by health professionals (median = 0.71, p = 0.003). A greater degree of adherence was self-reported for respiratory therapy (by 84.2%), exercise (by 21.1%), prescribed diet (by 65.8%), pancreatic enzymes (by 96.3%), vitamins (by 79.4%), inhaled antibiotic therapy (by 76.7%) and inhaled DNase (by 79.4%). CONCLUSIONS Self-reported adherence of patients attending a Program for Adults with CF was good. The self-reported patient adherence score correlated inversely with the clinical score. Self-reported patient adherence was greater than the adherence perceived by health professionals.

Comunicação do diagnóstico: implicações no tratamento de adolescentes doentes crônicos

ae ABSTRACT. This s tudy describes, interprets and d iscusses communicative a spects of physician-patient relations in the treatment of adolescents with chronic organic illnesses. Fifteen ph ysicians (generalists and specialists), 18 adolescents (13 with cystic fibrosis and five with o ther chronic organic diseases), 16 mothers and two fathers, were interviewed. Semi- structured interviews were recorded, transcribed and analyzed according to three c haracteristic phenomenological steps: qualitative description, logical i nduction and interpretation. The results discuss the difficulties in communicating bad n ews and the implications of mistakes in such p rocedures, which may endanger the a dhesion to treatment. The c onclusions highlight t he psychologist part i n the health team, offering better conditions to the psychological development of these patients, helping in physician-patient communication and co-operating on treatment adhesion.

Percepção da gravidade da doença em pacientes adultos com fibrose cística

OBJECTIVE: To evaluate the perception of disease severity in patients with cystic fibrosis (CF), investigating its relationship with clinical score, radiographic score, respiratory function tests, adherence to treatment and perception of self-care practices. METHODS: Prospective, cross-sectional study involving CF patients treated in a program for adults with CF. The perception of disease severity, adherence to treatment and reported self-care practices were evaluated by means of questionnaires. Clinical data, Shwachman-Kulczycki clinical score, Brasfield radiographic score and spirometry were obtained for all of the patients. RESULTS: Of the 38 patients studied, 3 (7.9%) patients rated their perception of health status as well below average; 5 (13.2%), as below average; 15 (39.5%), as average; 10 (26.3%), as above average; and 5 (13.2%), as well above average. The perception of disease severity correlated significantly with clinical score (r = 0.43, p = 0.007), FVC (r = 0.34, p = 0.034), FEV1 (r = 0.38, p = 0.019) and self-care practices (r = 0.33, p = 0.044), but not with degree of adherence (r = -0.03, p = 0.842) and radiographic score (r = 0.33, p = 0.51). CONCLUSIONS: The perception of disease severity correlated with objective measurements of disease severity (clinical score and respiratory function tests) and with reported self-care practices, but not with adherence to treatment.