Mothers' reflections on the diagnosis and birth of their child with Down syndrome: Variability based on the timing of the diagnosis

Abstract

Previous research has examined parents' reflections on their child's Down syndrome diagnosis based on whether the diagnosis was provided prenatally or after birth, revealing few significant differences; by comparison, few studies have examined parents' reflections on the birth of the child in relation to the timing of the diagnosis. This study was conducted to examine whether mothers differentially reported on and rated the diagnosis, birth, and most recent birthday of their child with DS based on when the diagnosis was provided. Forty-four American mothers of children with DS discussed the birth of their child, when they learned of their child's DS diagnosis, and their child's most recent birthday with a researcher. Participants also completed online questionnaires on which they rated the events and indicated how they felt about the events at the time of their occurrence and at the time of the study. The results revealed that participants who received a prenatal diagnosis of DS for their child reflected differently-and seemingly more positively-on their child's birth relative to participants who received a postnatal diagnosis. These differences were evident when considering participant ratings, emotion language used when discussing the events, and feeling states characterizing how participants felt about the events at the time of their occurrence and at the time of the study. Given these group differences, medical professionals should carefully consider the conditions under which they provide mothers with diagnostic information and support services after a child is born.

Keywords: disability; family; genetic counseling; genetic testing; parents; prenatal diagnosis.

FIGURE 1

Participant‐rated frequency of thought for the diagnosis and birth events by group. A significant Group × Event interaction was found: F _{(1, 42)} = 7.01, p = 0.011. Significant differences (p < 0.05) identified through follow‐up pairwise comparisons are indicated (*).

FIGURE 2

Participant‐rated frequency of conversation for the diagnosis and birth events by group. A significant Group × Event interaction was found: F _{(1, 42)} = 3.15, p = 0.046. Significant differences (p < 0.05) identified through follow‐up pairwise comparisons are indicated (*).

FIGURE 3

Participant‐rated significance of the diagnosis (Panel a) and birth events (Panel b). A significant Group × Event × Time interaction was found: F _{(1, 42)} = 12.22, p = 0.001. Simple effects analyses were conducted by event. For the diagnosis event (Panel a), a main effect of time was found: F _{(1, 42)} = 39.32, p < 0.001. For the birth event (Panel b), a main effect of time: F _{(1, 42)} = 27.30, p < 0.001, was qualified by a Group × Time interaction: F _{(1, 42)} = 10.03, p < 0.003. Significant differences (p < 0.05) identified through follow‐up pairwise comparisons are indicated (*).

FIGURE 4

Emotion term use for the diagnosis and birth events by group. A significant Event × Group interaction was found: F _{(1, 42)} = 4.96, p = 0.031. Significant differences (p < 0.05) identified through follow‐up pairwise comparisons are indicated (*).

FIGURE 5

Participant‐reported feeling states for the diagnosis (Panel a) and birth events (Panel b). A significant Event × Valence × Group interaction was found: F _{(1, 40)} = 11.30, p = 0.002. Simple effects analyses were conducted by event. For the diagnosis event (Panel a), a main effect of valence was found: F _{(1, 40)} = 9.62, p = 0.004. For the birth event (Panel b), a Group × Valence interaction was found: F _{(1, 40)} = 6.22, p = 0.017. Significant differences (p < 0.05) identified through follow‐up pairwise comparisons are indicated (*).