There are disconnects in priorities for healthcare providers caring for very young children with cerebral palsy (CP) and those children’s parents, a new study has found. This finding suggests that addressing these disconnects could improve provider-parent communication and ultimately the quality of care.
The study, “Comparing parent and provider priorities in discussions of early detection and intervention for infants with and at risk of cerebral palsy,” was published in the journal Child: Care, Health, and Development.
For parents, a diagnosis of CP for their child is challenging, and there is an obvious need for support from healthcare providers in navigating such a diagnosis and subsequent treatment options. Although there are some guidelines for how healthcare providers should handle these conversations, there isn’t much data on what parents actually want.
To address this gap in knowledge, researchers behind the new study conducted day-long focus groups for 17 parents of children diagnosed with CP. The participants all lived in the United States, most (12 of 17) were white, and the average age of their children at CP diagnosis was about 13 months.
The researchers also surveyed 30 healthcare providers — 23 physicians, four therapists, and three nurse practitioners — who regularly handled cases of very young children with diagnosed or suspected CP. Then, the researchers compared those responses to what parents said in the focus groups, looking for places where priorities did, or did not, line up.
Several discrepancies were highlighted. First, parents reported valuing honesty, but also wanting a positive tone in discussions — for example, a focus on what a child will be able to do, as opposed to what they won’t be able to do. About a third of the healthcare providers, however, reported using a generally more negative tone.
Parents also reported valuing specificity: “They want a discussion of CP specifically pertaining to their child, not to all children with CP,” the researchers wrote in their paper. Providers, in contrast, tended to shy away from such specificity, instead emphasizing the wide range of prognoses and the uncertainty in prediction, particularly for diagnosis at such a young age.
Another discrepancy was in the use of diagnostic tools, both imaging (e.g., MRI) and motor assessments. Parents reported wanting details, but most providers didn’t even use the names of motor assessments when discussing them, presumably due to worries of making the conversation too complicated and jargon-y. The researchers suggested that, “providers should describe the neuromotor assessment tools to parents when making a diagnosis of CP, in words that they can understand, but stating the names of the assessments.”
The researchers also noted that the decision to do an MRI or not is “often complicated by characteristics of the current US healthcare system.” In other words, it can be expensive and not covered by insurance, so the benefits may not be worth the costs. The researchers suggest having “honest and clear discussion of risks/benefits with parents and providers enabling joint decision making.”
Both parents and providers were generally in agreement that early diagnosis — and early application of evidence-based treatments — is important. However, parents and providers tended to view the process of getting such treatment differently: “Parents want providers to help them access the best care for their child, whereas providers want parents to navigate these systems themselves.” This suggests that healthcare providers could do more to help parents figure out how to get their child the best care possible.
Interestingly, the “most consistent area of discordance” between parents and providers centered around food. Parents tended to be concerned with quality of life and socialization around feeding, whereas providers were more focused on weight gain and logistics (e.g., if a child has difficulty swallowing).
The researchers speculate this actually may have more to do with parents’ concerns about their children being able to be involved in social activities, noting that such participation, “is critical for well-being and quality of life for all people — with and without disabilities. Parents appear to intuit [instinctually understand] this more than providers, and participation should rise among the top concerns for anyone caring for children with CP.”
It’s important to remember that this study surveyed only a few individuals at one center in the U.S.; as such, the findings cannot be generalized to every parent of a child with CP. However, researchers suggest, addressing these areas of disconnect may allow for more productive parent-provider communication and, ultimately, better care.