Impact of Youth with Intellectual and Developmental Disabilities on Families: Balancing Perspectives

Abstract

The study of the impact of children or youth with intellectual and developmental disabilities on their families has grown increasingly complex. This is due, in part, to the multiple perspectives represented in research (e.g., mothers, fathers, siblings) and to the myriad of outcomes examined (e.g., negative vs. positive impact on families). Basic tenets set forth include encompassing theoretical models that can be used to integrate family research on impact, an evaluative discussion of the importance of child problem behaviors, and family socioeconomic status as vital to the discussion of family stress. Parenting behaviors that influence impact are also identified, with attention to important moderators of family outcomes that further elucidate processes over and above main effects research. The article concludes with a discussion of promising directions that may alter the impact of youth with intellectual and developmental disabilities on the family. Theoretical FrameworkOver the past few decades, research on families with children and youth with intellectual and developmental disabilities (IDD) has expanded, and new directions of focus have appeared. Greater emphasis has been placed on studying the whole family, rather than merely the child with a disability. Family system models holistically consider the individual with a disability, the parents/caregivers, as well as the interactional processes that exist (e.g., marital adjustment, parent-child relationships, sibling relationships) and the subsystems that affect them [1-4]. Bronfenbrenner's framework [5] has been considered a theoretical model that transformed the way many researchers approach the study of human development. He conceptualized the person and the family as the center focus, bounded by interrelated layers or systems. These systems are defined by interactional contexts, such as school, work, and overall social structure. Through this lens, one must assess the broader family context and the environment in which members are involved in order to understand the child's development. Although this emphasis was embodied in the seminal article by Crnic, Friedrich, and Greenberg [6], it remains relevant today and can help to integrate research on the multiple biological and environmental pathways that are reflected in the impact of a child with disability on the family [7,8].This paper utilizes the term Bintellectual and developmental disabilities^because it incorporates individuals with an IQ in the intellectual disability (ID) range as well as other conditions, notably autism, whose intelligence may or may not be in the ID range but who continue to struggle developmentally across adaptive domains. Throughout, we make no distinction unless there is a disability-specific point to be made.

The construct of maternal positivity in mothers of children with intellectual disability

“…There has been a shift within disability research from focusing on negative outcomes such as stress and depression, to exploring positive outcomes (Stainton & Besser 1998;Trute et al 2012;Bolourian & Blacher 2016;Hastings 2016). For example, the Family Impact Questionnaire (FIQ; Donenberg & Baker 1993) assesses parents' positive and negative perceptions of their child's impact on the family (compared with the impact of other children).…”