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

J Fam Nurs. 2023 Nov;29(4):324-347. doi: 10.1177/10748407231163236. Epub 2023 Apr 17.

Abstract

Down syndrome (DS) is a chromosomal disorder associated with intellectual and physical disabilities and has historically been viewed by health care providers through a negative lens when considering the effect the condition has on the individual, family, and community. The purpose of this scoping review was to provide an overview of recent research concerning adaptation in families of individuals with DS with a focus on family adaptation rather than individual or dyadic adaptation. Three literature indexes were searched from 2017 to 2022, with 41 articles included. Foci of the studies included strength/resilience, stress/coping, and negative/challenge. Thirteen studies reported using a family framework. Multiple methodological approaches and family measures were used in the studies and are outlined. Findings from this review show there has been a shift in focus when researching families of individuals with DS from a negative and challenging experience to one of strength and resilience.

Keywords: Down syndrome; adaptation; family; family caregiver; resilience.

Publication types

  • Review

MeSH terms

  • Adaptation, Psychological
  • Down Syndrome*
  • Family
  • Health Personnel
  • Humans