Social support and quality of life of families with children with congenital heart disease

Abstract The scope of this article is to evaluate to what extent social support for families with children with congenital disease impacts their quality of life. It involved a cross-sectional study with 254 parents of children with congenital heart disease. A semi-structured interview was conducted with the parents, using the Ecomap and the quality of life (World Health Organization Quality of Life Bref) and social support (Medical Outcomes Study) scales. Receiving social support was positively correlated with quality of life (r=0.535; p<0.001). A 10-point increase in the social support scale led to a 3-point increase in the total score of the quality of life scale (β=0.30; CI95%: 0.23; 0.37). Socioeconomic conditions were associated with quality of life (β=0.27; CI95%: 0.11; 0.43) and caregivers who reported not having leisure activity (β=-3.27; CI95% -5.55; -1.12) and who were undergoing health treatment (β=-2.86; CI95%: -5.55; -0.17) had a lower perception of quality of life. Negative consequences to the quality of life of caregivers taking care of a child with congenital heart disease can be intensified by a lack of leisure activity and having health problems. Adequate social support and socioeconomic resources positively influence the quality of life of these caregivers.