Parents of severely ill children see benefits as caregivers, says study

April 24, 2014

Benefits often coexist with the negative and stressful outcomes for parents who have a child born with or later diagnosed with a life-limiting illness, says a recent study led by a researcher at the University of Waterloo.

While the challenges are numerous and life-changing and stress levels high, the vast majority of who participated in the Waterloo-led research reported positive outcomes as well, a phenomenon known as posttraumatic growth. The findings appear in the most recent issue of the American Journal of Orthopsychiatry.

"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 care-giving as well," said Professor Susan Cadell, lead author of the study. She is a professor in 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."

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 participated by answering a 15-page questionnaire.

On average, respondents spent more than 62 hours a week as caregivers, the majority said their employment status changed as a result of their child's condition, and reported high levels of difficulty in managing cost. Still, caregivers reported growth, as measured by the PostTraumatic Growth Inventory (PTGI), a common tool used to measure positive aspects of stressful situations.

Out of a possible 126 points, with 0 indicating no growth at all, the parents reported an average of 62 points on the PTGI. Areas measured include 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 Professor 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 care-giving parents."

Researchers from six universities contributed to the study, including McGill University, the University of British Columbia, York University, University of Victoria and Nipissing University. The study looks at the first three years of data.

With the wealth of information collected during this study, including three more years of data, the research team plans to examine how posttraumatic growth changes over time. The Canadian Institutes of Health Research funded the project. A documentary film involving many of the families is also in the works for use in course work and outreach programs.

Explore further: New study shows positive personal growth following breast cancer diagnosis

Related Stories

New study shows positive personal growth following breast cancer diagnosis

October 25, 2013
Although being diagnosed with breast cancer is usually an extremely stressful experience for most women, a new study by researchers at Wake Forest Baptist Medical Center has found that there also can be unexpected benefits.

Resilience in parents of children undergoing stem cell transplant

February 11, 2014
A child's illness can challenge a parent's wellbeing. However, a study recently published in the journal Biology of Blood and Marrow Transplantation shows that in the case of a child's stem cell transplant, parents feel increased ...

Use of spanking exacerbates aggressive child behavior

December 10, 2013
A mother's affection after she spanks her child does little to diminish the negative impact of the act, a new University of Michigan study finds.

Child burn effects far reaching for parents

April 17, 2014
Parents of burn victims experience significant psychological distress for at least three months after the incident and may compromise the post-operative recovery of their child, WA research has found.

Pending malpractice litigation may bias parents' reports

April 4, 2014
(HealthDay)—Following neonatal brachial plexus palsy, medical malpractice litigation is associated with worse parent reports of their child's function and pain, according to a study published in the March 5 issue of The ...

Recommended for you

Heart rate study tests emotional impact of Shakespeare

July 26, 2017
In a world where on-screen violence has become commonplace, Britain's Royal Shakespeare Company is turning to science to discover whether the playwright can still make our hearts race more than 400 years on.

Talking to yourself can help you control stressful emotions

July 26, 2017
The simple act of silently talking to yourself in the third person during stressful times may help you control emotions without any additional mental effort than what you would use for first-person self-talk – the way people ...

Do all people experience similar near-death-experiences?

July 26, 2017
No one really knows what happens when we die, but many people have stories to tell about what they experienced while being close to death. People who have had a near-death-experience usually report very rich and detailed ...

Risk for bipolar disorder associated with faster aging

July 26, 2017
New King's College London research suggests that people with a family history of bipolar disorder may 'age' more rapidly than those without a history of the disease.

Visual clues we use during walking and when we use them

July 25, 2017
(Medical Xpress)—A trio of researchers with the University of Texas and Rensselaer Polytechnic Institute has discovered which phase of visual information processing during human walking is used most to guide the feet accurately. ...

Toddlers begin learning rules of reading, writing at very early age, study finds

July 25, 2017
Even the proudest of parents may struggle to find some semblance of meaning behind the seemingly random mish-mash of letters that often emerge from a toddler's first scribbled and scrawled attempts at putting words on paper.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.