Resiliência em famílias de crianças com síndrome de Down: desenvolvimento, implementação de uma intervenção e avaliação de seus efeitos

Abstract

Resilience in families containing children with Down syndrome (DS) consists of a positive adaptation, in addition to a healthy coping of the syndrome-related adversities. Interventions that promote family resilience represent a mechanism for health promotion, but they are scarce. Thus, this study aims to develop, implement and evaluate the effects of an intervention program focused on promoting resilience in eight families of children with DS up to 2 years of age. The intervention was built from the scientific literature. Home visits were done during a year for each family, pre-test, post-test and follow up. In the pre-test, both parents answered the Family System Characterization Questionnaire, the Lipp Adult Stress Symptom Inventory (LASSI), the Beck Depression Inventory (BDI), the Family Support Perception Inventory (FSPI) and two semi-structured interviews. The child with typical development (TD) responded to the Infant Stress Scale (ISS), the FSPI and the interviews. All family members responded together to the Inventory of Family Protective Factors (IFPF). After the application of all the instruments, the families were classified according to the family arrangements and income. Then, they were randomly distributed in two groups: (1) experimental group (EG) with 4 families participating in the intervention with focus in promoting family resilience; (2) control group (CG) with 4 families that did not participate in interventions and, during this period, did not have contact with the researcher. It took 11 workshops to complete the intervention. After the implementation of the intervention program, the post-test was started with a home visit in each of the eight families. At that time, the parents and children with TD were individually interviewed about the family resilience process and answered the LASSI or ISS, FSPI and BDI, and the IFPF was answered jointly by the family. Families of EG were also interviewed separately for the evaluation of the intervention. Four months after the last home visit, a follow-up was performed with all the families that responded to the same instruments of the post-test, except for the interview about the evaluation of the intervention. In the evaluations of the effects of the intervention, no statistically significant differences were found between resilience values in all families at different measurement times (p = 0,77). However, the majority of family members perceive at least one change in the family as a result of the work performed (n = 8), with more frequent improvements in communication (n = 5) and acquisition of knowledge about DS (n = 5). It is necessary that researchers conduct future studies with a larger sample of participants from a more extensive data collection so that the effects of the intervention can be analyzed more concisely.