Parenting a child with a longstanding or life-threatening illness—including chronic pain, cancer, diabetes, asthma and traumatic brain injury—can have a negative impact on many aspects of a parent’s and family’s life. Parents often have difficulty balancing care for their child with other responsibilities such as work, social life, finance and household tasks.
But there are very few programs in the world that address these issues for parents of children with chronic pain, based on a new Cochrane Review published August 15.
Cochrane Reviews are systematic reviews of primary research in healthcare and health policy, and are internationally recognized as the highest standard in evidence-based healthcare. Tonya Palermo, PhD, of Seattle Children’s Research Institute is a co-author of “Psychological therapy for parents of children with a longstanding or life-threatening physical illness.”
Palermo and co-authors found 35 randomized controlled trials of psychological interventions that included parents of youth with chronic illness; 12 of these trials focused on intervening with parents of children with chronic pain. Psychological interventions were cognitive behavioral therapy, family therapy, problem-solving therapy and multi-systemic therapy.
Researchers found that psychological interventions that included parents led to significant reductions in pain for children with painful conditions, but effects on parental well-being were not measured. Problem-solving skills training was the only therapy found to be beneficial for improving parental well-being for children with other chronic illnesses, but has not yet been evaluated in families of children with chronic pain.
“Parents of children with chronic pain are under a great deal of stress,” said Dr. Palermo. “There are programs that could be developed to help parents manage their own level of stress and, in turn, to be able to help their children to better manage pain. One therapy that may be particularly helpful for parents and families is learning problem-solving skills.”
Therapy helps the whole family
Catherine, who has three daughters, has benefitted from therapies developed by Dr. Palermo and her team. Her teenage daughter, Faith, was diagnosed nearly two years ago with a chronic pain condition which affects her wrist. “Her pain receptors misfire,” said Catherine. Her daughter’s intensive pain therapy program currently includes two hours of occupational therapy and two hours of physical therapy on a daily basis.
Catherine said that it was helpful to learn that other families struggle with daily activities and stress, and she found problem-solving skills sessions, including brainstorming, to be useful. A point of contention in the family, for example, was debate about sleep time, and being quiet at night. One of her daughters came up with an idea to create a soundproof sleeping area.
Another topic of discussion was how to share space. Catherine now has a new “roommate,” a daughter who likes to watch the same television shows and keeps similar hours. “What we’ve come up with has worked quite well,” she said. “The program has been helpful and has provided structure, and I’m teaching the kids how to problem-solve, too.”
Palermo said as part of the therapy, parents are encouraged to break down problems into small parts to make them more solvable and not insurmountable. “If we can help parents cope better, they are better able to help their children with this complex condition,” she said.
Palermo and researchers at Oregon Health & Science University are launching a clinical trial in September aimed at evaluating problem-solving skills training in parents and caregivers of adolescents with chronic pain. Researchers will assess the effects of problem-solving skills training on parent psychological well-being and on adolescent health outcomes.
If you’d like to interview Dr. Palermo, please contact Seattle Children’s PR team at 206-987-4500 or [email protected].