The study, published in the American Journal of Orthopsychiatry, reveals that although the challenges are numerous and the stress levels are high, the vast majority of parents who participated in the research reported positive outcomes as well — a phenomenon known as posttraumatic growth.
“What is pivotal is the meaning the parents make — what it means to them to be a parent who is doing more than parenting: they are caregiving as well,” said lead author Susan Cadell, Ph.D., of the School of Social Work at Renison University College at Waterloo.
“For many parents, this means learning a great deal about their child’s illness, the treatment, and sometimes it includes advocating for themselves and others in similar circumstances.”
The study involved more than 270 parents of children under the age of 20 in Canada and the U.S. with diseases and conditions such as cancer, severe cerebral palsy, and irreversible organ failure.
On average, the parents spent more than 62 hours a week as caregivers. The majority of the participants also said their employment status changed as a result of their child’s condition, and they reported high levels of difficulty in managing the financial burden.
Still, caregivers reported growth, as measured by the PostTraumatic Growth Inventory (PTGI), a common tool used to measure positive aspects of stressful situations.
On a scale of 0-126, the parents reported an average of 62 points on the PTGI. Areas measured included relating to others, personal strength, appreciation of life, and spiritual change.
“The findings indicate that there are a variety of positive aspects in a population where we think not much positive at all is happening,” said Cadell.
“Our response rate was high because people wanted to talk about their children, families, and relationships. This research has the potential to positively impact support for caregiving parents.”
As an extension of the vast amount of information collected during this study, the research team plans to examine how posttraumatic growth changes over time. A documentary film involving many of the families is also being produced; it will be used in course work and outreach programs.
Source: University of Waterloo