Amplifying Youth Voices: The Importance of Direct Pediatric Patient Feedback

Alexa Petta, Child Life Specialist
The Hospital for Sick Children (SickKids)

The collection of experiential survey data is a practice all too familiar in Patient and Family Experience (PFX). Surveys allow institutions to collect large amounts of quantifiable data through resource-lite methods, illuminating strengths and opportunities that improve the quality of care. Who does the reporting, then, matters greatly for the story that data tells. For pediatric institutions, the who often refers to parents, who play a vital role in caring for pediatric patients, but where does this leave the patient voice?  

An external scan of pediatric hospitals’ experience practices in Canada and the United States showed that very few settings seek feedback directly from pediatric patients. Organizations often rely on satisfaction surveys completed by parents, resulting in data describing parents’ perceptions of patient experience, as opposed to the patient’s own experience. This is not to say the parental perspective is not an important one, but it may mean the unique needs and priorities of pediatric patients are overlooked.

For example, in an online resource discussing pediatric medical traumatic stress, the Health Care Toolbox quotes research conducted by Children’s Hospital of Philadelphia, where the self-reported list of most traumatic events were almost opposite each other for child cancer survivors and their mothers.¹

Figure 1. Health Care Toolbox²

These results suggest that relying solely on the report of parents misses part of the picture for pediatric patient experiences.

In addition to ensuring there are processes in place to complement parental feedback, it is also important that the methods used are developmentally appropriate for pediatric patients.  

In a conversation with SickKids’ Patient Advisory Council, a patient advisory committee comprised of patients aged 12-18, Council members expressed that surveys are not an appealing method for engaging pediatric patients. Survey questions may not be written to be easily understood, do not account for the varied ways children and youth express themselves (such as through art or play), and are not inclusive of all communication abilities. Eliciting feedback from pediatric patients, therefore, can’t rely solely on survey methodologies.

When asked about how patients express themselves and talk to their care teams about their experience, members of the Patient Advisory Council shared that:

• How experiences are measured should be multi-modal, including creative platforms such as art, music and writing, speaking to someone they trust, and reflective practices like journaling. Tables like the Patient Advisory Council additionally create opportunities for voicing feedback.
• Experiences are shared with hopes of having an impact, ideally with someone who has influence to drive change, to improve the experiences of others, and to increase staff understanding about the experiences of patients from their perspective.
• Sharing needs to feel safe; patients want to feel heard, cared for, and that their well-being is prioritized in feedback conversations. Trust and mutual respect are integral to the success of collecting patient perspectives, and patients want to feel in control of what they share.
• They need to be met where they are at, approached with sensitively, flexibility and reassurance that their feedback is private and confidential.

As direct recipients of care, it is important to engage pediatric patient voices in experiential assessment, alongside their parents, to ensure meaningful representation in processes that drive accountability, quality improvement, accreditation, and funding. Excluding pediatric patients in this practice limits their ability to shape the system they utilize and rely on and contribute to the meaningful processes that are foundational to the practice of so many PFX teams globally.

References

¹ Barakat, L. P., Kazak, A. E., Meadows, A. T., et al. (1997). Families Surviving Childhood Cancer: A Comparison of Posttraumatic Stress Symptoms with Families of Healthy Children. Journal of Pediatric Psychology, 22(6), 843–859.

² Image taken from https://www.healthcaretoolbox.org/medical-traumatic-stress-the-basics