Failure to replicate a robust Down syndrome advantage for maternal well‐being

Abstract

Background Family members caring for children with intellectual disability (ID) routinely report heightened levels of psychological distress. However, families of children with Down syndrome typically report better outcomes (known as the Down syndrome advantage). We examined whether the Down syndrome advantage would be present for maternal psychological distress, impact of caregiving, life satisfaction and perceived positive impact of the child with ID when controlling for external variables. Methods Mothers of children with Down syndrome (n = 111) and mothers of children with ID of mixed aetiologies (n = 196) completed measures about their own mental health, perceived impact of caregiving, life satisfaction and perceived positive impact of their child on themselves and the family unit. Results A series of group comparisons revealed small to moderate differences supporting the presence of a putative Down syndrome advantage in relation to personal maternal well-being outcomes. However, when child-related characteristics and external variables were controlled, the Down syndrome advantage was no longer present, with reduced, small effect sizes observed for all maternal outcomes. Conclusions Initial group differences in psychological distress and life satisfaction were largely associated with family poverty, indicating that the Down syndrome advantage may be less robust than previously thought. Future research should seek to move beyond examining the existence of the putative Down syndrome advantage and focus on how families of children with Down syndrome experience family life, including longitudinal research exploring responses to life cycle and transition challenges.

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…Lee et al, 2020; Pruktarat et al, 2021), the measures were positioned as predictors of individual- or family-level adaptation. Seven studies (AlJameel & AlKawari, 2021; Caples et al, 2018; Carrada et al, 2019; Darla & Bhat, 2021; Jess et al, 2021; Ljubicic et al, 2020; Pruktarat et al, 2021) used the measures to assess the impact of other variables on adaptation. The study by J.…”

“…x Jess et al, 2021 The aim of the current study was to determine whether the DS advantage would be present in both personal (psychological distress and life satisfaction) and child-related (impact of caregiving and positive gains) maternal outcomes when multiple child and maternal variables (e.g., child age, child behavioral and emotional problems, and family poverty) were carefully controlled. et al, 1996) and the conceptualization of QoL in individuals with IDs (Lee et al, 2020).…”

“…Lee et al, 2021). Nine of the 19 studies that included an assessment of family adaptation were qualitative (AlJameel et al, 2020;De Clercq, Prinzie, Swerts, et al, 2022;De Clercq, Prinzie, Warreyn, et al, 2022;Duarte et al, 2022;McDonagh et al, 2021;Persons, 2017;Shivers et al, 2019;Steffensen et al, 2022;Watanabe et al, 2021), nine were quantitative (AlJameel & AlKawari, 2021;Caples et al, 2018;Carrada et al, 2019;Choi & Van Riper, 2020;Darla & Bhat, 2021;Ilacqua et al, 2019;Jess et al, 2021;Ljubicic et al, 2020;Pruktarat et al, 2021), and one was mixed-methods (Bertrand, 2019). Ten of the studies included an assessment of family problem-solving communication and coping.…”

Understanding the support experiences of families of children with autism and sensory processing difficulties: A qualitative study

“…24 Access to existing provision has previously been found to depend on socioeconomic and family circumstances. 23 , 25 For example, families of children with Down syndrome—who tend to report a lower incidence of poverty and higher levels of parental education compared to families of children with other neurodevelopmental disabilities 36 , 37 are more likely to report having their support needs met. 38 , 39 We found that in some cases, autism support was accessed by families as a result of parents' professional or social networks.…”

Parenting Stress in Mothers of Children and Adolescents with Down Syndrome

“…These results were replicated in subsequent studies [ 72 , 82 ]. A more recent study comparing mothers of children with DS with mothers of children with ID of mixed etiologies reported that the initial group differences in psychological distress and life satisfaction were largely associated with family poverty [ 83 ]. In summary, it emerges that research on parenting stress levels in DS needs to take into account SES when comparing reports from parents of children with DS with parents of children with other genetic conditions and/or other IDs.…”