Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk.

Objective: We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions.

Methods: Informed by theory, we identified four domains of adaptation: effective coping, self-esteem, social integration, and spiritual/existential meaning. Items were selected from the PROMIS "positive illness impact" item bank and adapted from the Rosenberg self-esteem scale to create a 20-item scale.

The role of hope in adaptation to uncertainty: the experience of caregivers of children with Down syndrome.

Objective: The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS).

Methods: A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers' levels of perceived uncertainty, hope, and adaptation.

Through the viewfinder: Positive Exposure a year later.

Positive Exposure, a non-profit organization founded and directed by former fashion photographer Rick Guidotti and co-directed by psychiatrist Dr. Diane McLean, uses photography and video interviews to explore the lived experiences of people affected with genetic conditions. Positive Exposure challenges pervasive social biases and stereotypes about genetic variation and strives to broaden and enrich societal perceptions of human beauty and spirit.