Pain Points: Measuring Family Stress When a Child has ADHD
Researchers have developed a new tool for clinicians to monitor family stress.
Posted Mar 22, 2019
Families report significant stress when a child has ADHD, even after their child is successfully treated. Up until now, families have typically received little help even as their well-being suffers. Now, researchers have created a new tool to help doctors support these families. The IMPACT 1.0 rating scale was co-created by researchers and families using design thinking methods.
ADHD in the Pediatrician's Office
Kids with attention deficit hyperactivity disorder can struggle immensely. Their brains don’t work like the other kids’ do and they may struggle in multiple areas of their lives. By necessity, the pediatricians (who now care for almost half of these kids) focus on the care of the child.
Pediatricians look at reports from teachers and parents, try to facilitate behavioral and learning supports at school, advise parents about behavior management at home, prescribe and monitor complex medications—all in 15-minute visits. Pediatricians must prioritize how kids are doing in school because this is the area they have the time and tools to address. The kids often do significantly better on stimulant medications combined with school supports, and their parents are thrilled by their child’s academic success.
However, even as kids do better in school, families continue to struggle. Families report “ongoing stress related to everyday activities and a lower quality of life compared to those raising children without ADHD.” These “pain points” put the well-being of the family at risk over time, and can lead to parent burn out. There are the disorganized mornings and the wild energy at bedtime when the medicine isn’t onboard to help. Parents find they worry about their child now, and carry fears about that child’s future. They are criticized by strangers during the embarrassing episodes in public places when their child does something impulsive.
Lacking a practical tool that fits into short office visits, pediatricians have not had an effective way to address these issues. The existing tools look for sweeping impairments both at home and school, but they do not capture the day-to-day challenges that wear on families. Asking families about the areas of stress is like opening a can of worms. “Pediatricians might ask in a more general way, such as ‘How are things going?’ Nerissa Bauer, M.D. told me. She is the lead author on the study and a developmental pediatrician, a specialist in pediatric developmental disorders.
“If the parent isn't trying to say ‘I have real concerns about x, y or z,’ then that's a missed opportunity to support the family. So, we wanted to figure out how to create a measure for quality of life around ADHD care that could be used in primary care practice. One that can be used quickly, but then opens that discussion around those problem areas. So that way we can really hone in on…the additional support [families] need.” These are the details Dr. Bauer’s team identified as “crucial for treatment decision-making, global psychological adjustment, and satisfaction with care.”
One of the most compelling features of this study is the use of design thinking techniques, originally used in business and engineering, to co-create the IMPACT 1.0 rating scale with families. The study’s authors noted that this “increases its face validity, and can lead to conversations that are practical and family-centered.”
“It was a very interesting way of doing things,” Dr. Bauer told me. “It's now becoming a strategy, so to speak, that people are using and introducing it to medicine to really figure out viable solutions but in a very different way of doing things. I love the idea because you invite the actual stakeholders and try to understand their pain points and what they need before you start redesigning or be revising a process in the healthcare system.”
At the time of the studies investigations, Nerissa Bauer was an associate professor at Indiana University School of Medicine and said the research designers were instrumental in bringing the design-thinking methodology to the work. The team enlisted parents as an advisory board in the creation of the IMPACT 1.0 scale, asking them whether what they were doing made sense. “What other pain points did we need to consider?”
“We really need to be involved in the families. We need to get their viewpoint… I've seen many many families over the course of years that I've been treating ADHD and of course, I know lots of stories. But I think I was really humbled by the fact that when I started actually working closely with family advisors and getting to go them on this level… instead of me coming up with the solution, we were co-creating things together. That’s the beauty of this… starting to see things in a very different way,” Dr. Bauer explained.
The IMPACT 1.0 Scale
The IMPACT Scale was designed for clinician use during primary care follow-up visits in conjunction with the Vanderbilt (the standard ADHD rating scale), to get at those key pain points that are making it hard on families.
On a 5 point scale, Impact 1.0 rates how often, in the past 4 weeks, issues have occurred. It looks at four main domains: misbehavior, siblings, time, and school. IMPACT 1.0 asks about phone calls from teachers, or times when parents worry that teachers think negatively about their child. It asks about misbehavior at social events, meal times, or while running errands in public.
The scale also addresses the parents’ level of functioning by asking if parents feel they don’t have enough time to give their other children attention or feel they don’t have time to get things done around the house or find a little time to relax. Finally, the scale looks at the crucial stressors around siblings by asking about physical or verbal fights, the ability of siblings to work together to complete household tasks. It even asks whether siblings do not want to be around the child with ADHD.
This tool looks to be very promising as a way to efficiently connect with families about elements of their lives that sound frankly heart-breaking. While Dr. Bauer says the team is conducting further study to improve the tools, IMPACT 1.0 is a validated tool ready for use in the primary care office.
LinkedIn Image Credit: Monkey Business Images/Shutterstock
Bauer, Nerissa S, MD, MPH. Ofner, Susan, MS., "Assessment of the Effects of Pediatric Attention Deficit Hyperactivity Disorder on Family Stress and Well-Being: Development of the IMPACT 1.0 Scale" March 15, 2019 Sage Journals, Global Pediatric HealthVolume 6: 1 –12