Avaliação e intervenção psicossocial em cuidadores familiares de crianças com anemia falciforme.

Abstract

Sickle cell anemia (SCA) represents an aversive context for both the patient who experiences the disease on a daily basis and for their caregivers, placing the whole family in a vulnerable situation. In this context of various stressors, parents or guardians of these children and adolescents search for ways to change or decrease sources of stress, leading to adaptation to adverse situations. Based on the negative effects that diagnosis, treatment and management of the disease can produce and the impact that it can have on the development of children and adolescents, this research had two main objectives: to investigate the family psychosocial risk and the psychological impact of SCA on family caregivers of children and adolescents with the disease; and to verify the effects of a psychosocial intervention proposal on the psychological adaptation of family caregivers of children diagnosed with SCA. In order to meet its objectives, this study was carried out by selecting a convenience sample of 100 family caregivers of children and adolescents with SCA, who were undergoing treatment at the Onco-Hematology Outpatient Clinic of a public children's hospital in Greater Vitória, ES. A subsample of caregivers (n = 12) was constituted to reach the objective of verifying the effects of the psychological intervention performed. Instruments were used to measure disease-related parenting stress (Pediatric Inventory for Parents – PIP), family functioning (Family Support Perception Inventory – IPSF, Portuguese abbreviation), coping (Response to Stress Questionnaire – RSQ), anxiety (Beck Anxiety Inventory – BAI), depression (Beck Depression Inventory – BDI) and psychosocial risk (Psychosocial Assessment Tool – PAT). Clinical and sociodemographic characteristics (Brazilian Economic Classification Criterion – CCEB, Portuguese abbreviation) of the outpatients were also obtained. In addition, an intervention program focusing on stress and coping with the disease was adapted for the caregivers. Data were analyzed using descriptive and inferential statistics. The results are presented in the form of articles, namely article 1 – The psychological impact of sickle cell anemia on family caregivers of children and adolescents with the disease, article 2 – Family psychosocial risk screening in children and adolescents with sickle cell anemia using the Psychosocial Assessment Tool (PAT 2.0-general), and article 3 – Effects of a psychological intervention program for caregivers of children and adolescents with sickle cell anemia. Characteristics of the disease (late diagnosis) and the patient (age) were associated with characteristics of the disease adaptation process and emotional symptoms. Furthermore, coping acted as a predictor of adjustment indicators of family caregivers. Regarding psychosocial risk, the participating families were classified as Target (42%), Clinical (40%), and Universal (18%). For the intervention group, positive effects were observed over time, with decreased stress and increased secondary coping. This study contributed to a greater understanding of the population of caregivers of children with sickle cell anemia in medical contexts and indicates possibilities for family psychological intervention.