Disability Research NetworkDisability Research Network

The emotional reactions and psychological wellbeing of parents of children with genetic developmental disabilities

This study will investigate how parents (and families) can change in both positive and negative ways following the birth of a child with a developmental disability. 

The diagnosis of a child's developmental disability is an intense and emotional experience. 

A developmental disability is developmental and/or intellectual delay from an early onset and includes conditions such as 22q11.2 deletion syndrome (22q11DS), Down syndrome, and Fragile X syndrome.

Parents of children with disabilities are at a higher risk of significant stress and mental health problems compared to family members of healthy children. 

When a child has a developmental disability the entire family unit is affected, with a change of roles and expectations for all members. However, despite challenges families can thrive as a result, often constructing meaningful stories surrounding the journey with their child. For instance, although parents may grieve the child they expected, they can discover new happiness or spirituality as a result of having a child with a developmental disability. 

This is psychological growth: a positive change in psychological functioning after trauma, such as developing strengths, changing life values and beliefs and accepting personal limitations (Joseph, 2012). 

Psychological growth can lead to resilient family functioning; that is, the ability to effectively manage difficult situations and learn from experiences to become strengthened and more resourceful (Rolland & Walsh, 2006). 

Strong and supportive family functioning is beneficial for all children, but is particularly important for children with developmental disorders, who are at high risk for adverse developmental outcomes. 

The aim of our research is to identify ways to help families to grow psychologically and to improve resilience.

Learn more at Findlab.net.au.