“It’s a whole new cancer world” and “I don’t remember what it’s like to have sleep” were the most common themes of mothers interviewed during the maintenance phase of their child’s treatment for acute lymphoblastic leukemia (ALL). Results of this qualitative study were published in the Journal of Pediatric Nursing (2014; doi:10.1016/j.pedn.2014.01.002).
A second study, published in the Journal of Pediatric Oncology Nursing (2014; doi:10.1177/1043454213520346), compared the quantitative differences between stress, anxiety, and depression in parents of chronically ill children and parents of healthy children. Even months after their child’s diagnosis and treatment, 46% of mothers still exhibited symptoms of clinical anxiety, and 26% of mothers showed depressive symptoms.
“Although these mothers were in the maintenance phase of their child’s treatment for ALL and the prognosis was good, we heard them say over and over that things could never go back to what they were before,” said Madalynn Neu, PhD, RN, assistant professor at the University of Colorado College of Nursing in Denver.
“Many had lost their normal lives—lost jobs, houses, friends. Some were juggling their time around their child’s needs and they had fears about many things—fear of recurrence, fear of making a mistake with medication, fear their kids might get sick with an infection,” said Ellen Matthews, PhD, RN, associate professor at the University of Colorado College of Nursing.
The researchers chose to work with mothers during the maintenance period of treatment to avoid making any additional demands on mothers during the acute period of their child’s illness. This allowed Neu, Matthews, and colleagues to look at the mid- and longer-term effects of a child’s diagnosis on the mother’s well-being. For example, the researchers found that once sleep arrangements changed during a child’s treatment, they frequently stayed changed rather than going back to what parents had seen as normal before treatment.
“Mothers talked about the difficulty of sleep while giving steroid medication. If the ill child got to stay up late watching movies, the siblings wanted to stay up, too. The same was true of sleeping in a parent’s room: if an ill child wanted to sleep close to a parent (or if a parent wanted to sleep close to an ill child), siblings tended to move in as well. Sleep can be challenging for parents of well children, and our studies show it’s even more challenging for parents of children who have had ALL,” Neu said.
The group hopes that awareness of maternal concerns after a child’s treatment for ALL will promote interventions to help mothers manage life issues affected by their child’s illness.