The research will be carried out throughout Ireland, the UK, and the US until April 2017, and the researchers are particularly keen for couples in Ireland to participate in the survey.
Dr Kristen Maglieri and Professor Brian Hughes from the School of Psychology at NUI Galway are recruiting couples to complete the online research study, exploring how parents in a relationship (married or unmarried ) cope with the daily stresses of raising a child with a disability.
The disabilities of interest include Intellectual Disability, Autism Spectrum Disorder, or genetic disorders such as Fragile X, Down Syndrome, or Angelman Syndrome.
Dr Kristen Maglieri said: “We are looking for 200 couples and 1,000 individual parents to take part in our study in Ireland. Most of the previous research on these stresses on families has focused on how individual parents cope, and the vast majority of the respondents have been mums. To us, it just seemed like there was a big piece of the puzzle missing. We need to understand how dads cope and also how mums and dads cope together in a family system.
“Parents of children with disabilities experience more daily stress on average than parents of typically developing children. Long-term exposure to daily stress can impact a person’s physical and emotional health. As physical and emotional health gets worse, it can impact marital satisfaction, life satisfaction, and outcomes for children.”
Dr Maglieri added that families of children with disabilities confront significant challenges but that these families do not all experience the same level of stress.
“We are trying to find out what makes the difference. By understanding how resilient families cope well with stress, we can hopefully learn how to help all other families to do so.”
Professor Brian Hughes said: “Parenting a child with a disability can be rewarding, but also extremely stressful. We know that parent stress can often impact negatively on the entire family system, and so reducing parent stress will help produce better outcomes for everybody in the family. To date, much of what we know about the impact on parents is anecdotal. We want this research to shine a light on the specific life experiences of parents.”
The online questionnaire is available at https://www.surveymonkey.com/r/parentcoping and takes 30 minutes to complete. Parents can also request a paper copy of the survey.
Each parent independently completes the questionnaire. One parent can participate, even if their partner does not wish to do so. This study is for parents who have children or adult children living at home with non-physical disabilities.
