Objectives: This study investigates the impact of an early systematic interdisciplinary developmental follow-up and individualized intervention program on the neurodevelopment of children with complex congenital heart disease (CHD) who required cardiac surgery. Study Design: We prospectively enrolled 80 children with CHD: 41 were already followed at our neurocardiac developmental follow-up clinic from the age of 4 months, while 39 were born before the establishment of the program and therefore received standard health care. We conducted cognitive, motor, and behavioral assessments at 3 years of age. We used one-way multivariate analyses of variance to compare the neurodevelopmental outcome of both groups. Results: Between-group analyses revealed a distinct neurodevelopmental profile with clinically significant effect size ( P < 0.001, partial η 2 = 0.366). Children followed at our clinic demonstrated better receptive language performances ( P = 0.048) and tended to show higher scores on visuo-constructive tasks ( P = 0.080). Children who received standard health care exhibited greater performances in working memory tasks ( P = 0.032). We found no group differences on global intellectual functioning, gross and fine motor skills, and behaviors. Referral rates for specific remedial services were higher in patients followed at our neurocardiac clinic compared to the historical cohort ( P < 0.005). Conclusions: Overall, the impact of the developmental follow-up and individualized intervention program on neurodevelopmental outcomes remains subtle. Nevertheless, results, although limited by several factors, point toward an advantage for the children who took part in the program regarding receptive language skills over children who received standard health care. We hypothesize that group differences may be greater with growing age. Further research involving larger cohorts is needed to clearly assess the effectiveness of neurocardiac developmental follow-up programs at school age.

No abstract

Les parents d’enfants ayant une déficience sont confrontés à plusieurs sources de stress et font face à plus d’obligations. Cet article présente une recension des écrits de 1985 à 2009 sur le soutien des grands-parents à ces parents. Cette revue révèle que différents éléments influencent la qualité de ce soutien : l’âge des grands-parents, leur état de santé, la proximité géographique, la communication, la proximité affective, les relations intergénérationnelles, leur attitude et leur implication. Cette recension soulève aussi la nécessité de poursuivre les études sur l’aide à donner aux grands-parents afin de faciliter leur rôle dans l’adaptation de la famille.Parents of children with a disability face many stressful factors, and have difficulty meeting their personal and professional obligations. This paper is a literature review of studies from 1985 to 2009 about grandparents' support of such parents. Several factors that can influence the quality of this support are highlighted; grandparents' ages and health conditions, geographical proximity, communication, closeness, intergenerational relationships, behaviour and involvement can all play a major role in the quality of help. Closeness seems to be the most important factor for the quality of the support and the level of involvement. This review underlines the importance of further study into how we might, in turn, assist grandparents in their supportive role in the family's adjustment process