Problem-solving and coping in family adaptation of children with Down Syndrome

Patrícia Pinto Braga,Juliana Barony Da Silva,Bárbara Radieddine Guimarães,Elysângela Dittz Duarte,Márcia Van Riper

doi:10.1590/s1980-220x2020001803708

Abstract

To analyze problem-solving and coping strategies of parents of children with Down Syndrome in family adaptation. This is a qualitative research that used the Resiliency Model of Family Stress, Adjustment, and Adaptation. Participants were mothers and/or fathers from 40 families of children aged 1 to 7 years diagnosed with DS. Directed content analysis was performed, supported by software and considering a code dictionary. Problem-solving and coping proved to be a set of actions, behaviors, efforts, and communications that contributed to family adaptation and favored balance between the demands imposed by Down Syndrome and the acquisition of resources by the family. In the first moment, which corresponds to the time of news or diagnosis of the syndrome and the first days after birth, internal and external resources, which represent coping, are developed to accept and refocus ideas and feelings towards Down Syndrome. Over time these resources have an effect and cause changes in family functioning patterns and in the relationship of these families with the outside world, as they seek child development.

Highlights

Down Syndrome (DS), the most common chromosomal disorder in humans, has an estimated worldwide incidence of 1 case per 1000 live births, and accounts for approximately 25% of cases of intellectual delay[1]
Problem-solving and coping proved to be a set of actions, behaviors, efforts, and communications that contributed to family adaptation and favored balance between the demands imposed by Down Syndrome and the acquisition of resources by the family
Problem-solving and coping (PSC) strategies contributed for families to accept and reframe ideas and feelings related to DS

Summary

Introduction

Down Syndrome (DS), the most common chromosomal disorder in humans, has an estimated worldwide incidence of 1 case per 1000 live births, and accounts for approximately 25% of cases of intellectual delay[1]. In Brazil, the estimate is 1 child for every 600 and 800 births, representing approximately 270 thousand people[1]. In this context, it should be considered that this population, especially children, has the specific therapeutic demands and the required care associated to the family’s broader needs create a daily routine of accumulated demands and overloads[2]. Studies dedicated to analyzing resilience and adaptation in situations of chronic conditions have shown that even amidst adversities families can adopt behaviors and mobilize efforts that modify their functioning, making situations manageable and acceptable[3,4] Such changes can contribute to the strengthening of parents and families as a whole. In the context of DS, professionals should be aware of circumstances that prevent or hinder family adaptation and should support and encourage families to adopt resources to cope with stressful situations[3]

Methods

Results

Discussion

Conclusion