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Top Considerations for Pediatric Patient Engagement Strategies

Goal-setting with young kids, family engagement, and adolescent patient privacy and autonomy are key pediatric patient engagement considerations.

Pediatric patients aren’t just “small adults.” Clinicians know that concept when making diagnostic decisions, and need to keep it top-of-mind when deploying pediatric patient engagement strategies, too.

Patient engagement and activation are hallmarks of a good patient-provider relationship. These communication strategies help facilitate a good patient experience, drive patient self-management, and support healthy behavior change. In short, getting a patient—especially one who is chronically ill or high-risk for chronic disease—to take care of themselves often hinges on good patient engagement.

That doesn’t mean good patient engagement is easy, and those working with kids in the pediatric space face a number of additional challenges that make pediatric patient engagement more complex. Kids aren’t just small grown-ups; they have different developmental stages, different personal goals for wellness (even if they can’t always articulate them), and a broader array of stakeholders involved in their care, such as parents or guardians or siblings.

What’s more, pediatric healthcare providers have to contend with the fact that the children they treat won’t always be children, and those clinicians play a role in preparing kids for adulthood.

Tapering off pediatric patient engagement strategies geared toward young children will be important for instilling responsibility in teens and readying them to take care of themselves in adulthood.

Understanding pediatric goal-setting

Goal-setting with patients is critical to good patient engagement. Identifying a wellness goal, whether that be achieving a better A1c reading or staving off a potential chronic illness, helps patients and providers then identify the steps to achieving it. This is a concrete, tangible process that, with patient motivation, can be effective.

But with kids, things can be a little harder. Not every kid, even those who have a chronic illness, knows how to articulate her own wellness goals. For some very young age groups, this goal-setting activity would take place with the parents or guardians, but as the child becomes older and more autonomous, clinicians need to engage the child in goal-setting, too.

“By professional best practice, pediatric physical and occupational therapists must focus intervention on activities of value to the family and of interest to the child,” researchers wrote in a 2019 Pediatric Quality & Safety article. “This patient-centered approach promotes and empowers the consumer of therapy services.”

Healthcare providers working on pediatric wellness goal-setting suggest using home-based tasks as key patient-reported outcomes measures (PROMs). For example, a pediatric patient and her provider might agree a good goal during occupational therapy is being to help her parents carry in the groceries. That offers a tangible goal toward which she and her clinician can work.

What’s more, healthcare providers said these goals should be co-designed by themselves, the pediatric patient, and the adults at home. Having concordance across the three parties is likely to lead to better patient experience and patient success at achieving that goal.

“To improve goal agreement between caregivers and therapists, we recommend that goals be established with enhanced family involvement, focused on functional content, and identified as a current priority to the patient and family,” the researchers wrote in Pediatric Quality & Safety.

Healthcare professionals should consider caregiver health literacy levels, the patient education structures in place, and the observational nature of goal outcomes.

According to experts from Johns Hopkins All Children’s Hospital, healthcare providers need to keep things simple when engaging children in health-related goal-setting. Using the example of weight management, the researchers said using the SMART goal model (specific, measurable, achievable, results-focused, time-sensitive) helps streamline the process for kids.

Additionally, translating overall health-related goals into daily or weekly tasks helps give kids something actionable to do. For example, giving a pediatric patient the goal of maintaining a regular weight might not be helpful for the patient; but a provider can ask the patient if she can manage to weigh herself weekly.

Family engagement

When it comes to pediatric healthcare, the parent or guardian, often called the caregiver, play huge roles. Kids aren’t always developmentally ready to fully manage their own health, so the adult at home needs to play a hand in that.

As noted above, concordance in wellness goal-setting between caregiver, pediatric patient, and clinician is important to good self-management at home. When the caregiver isn’t in the loop about a child’s chronic disease management goals, there’s a risk the child won’t achieve those goals.

“When concordance between caregiver-perceived goals and therapist-documented goals is poor, as observed in the present study, opportunities for reinforcement at home or in the community may be diminished, and therapy doses are likely to be inadequate,” the researchers wrote in Pediatric Quality & Safety. “Motor skills are likely to be underpracticed, learning is less likely to progress beyond the therapy setting, and goals are less likely to be achieved.”

Letting parents or guardians in on pediatric goal-setting is only half the battle. From there, caregivers need the education to help maintain health at home. This can range from understanding simply what the care plan is—a certain diet for a child with diabetes—all the way to knowing how to do certain procedures for a kid with a serious illness.

Healthcare providers can use similar patient education strategies with pediatric caregivers as they might with adult patients. Patient teach-back, or asking the caregiver to repeat what they believe care instructions are, helps clinicians assess understanding.

Handouts, digital engagement modules, and decision aids are also helpful for caregivers determining the next best steps in care management.

Family engagement and experience often go beyond the parent or guardian; some pediatric patients have siblings who are undoubtedly impacted by a child’s illness. When a child is seriously ill, siblings might be scared, confused, or even jealous and angry about the attention they feel they are not getting. Parents and guardians might need support caring for siblings, as well, and clinicians can play a role in this.

Particularly, healthcare providers might be helpful for explaining the illness to siblings who are scared for their loved one.

“I try to do a lot of support for siblings so they understand what is happening to their brother or sister,” Kate Carpenter, MEd, CCLS III, a child life specialist at the Children’s Hospital of Philadelphia, said in a 2018 interview. “They need to feel like they have a safe space to ask questions or process information that can be challenging.”

CHOP hosts Sib Shops, a program specifically designed for brothers and sisters of children with chronic illness or developmental issues that require special attention. This provides siblings with a chance to talk about their feelings and to relate to others who are going through similar experiences.

Age appropriateness, adolescent patient privacy

Of course, kids don’t stay kids forever; eventually, they grow into adults and access care outside of pediatric settings. Providers need to prepare them for that through patient engagement strategies.

For example, many of the patient experience tools in pediatric settings center young children. Children’s hospitals use a lot of medical play props, like toys that mimick doctor’s tools and stuffed animals posing at patients. This helps prepare the young child for a scary procedure to come, but it won’t necessarily help a teenager.

That’s because a teen’s fears probably aren’t the same as a younger kid’s. Researchers have found teens tend to be more concerned about separation from their peer group during a long hospital stay, or standing out for having an illness. Understanding those nuances can help clinicians tailor their patient-provider communication skills with adolescent patients.

“Part of my skill set is to be able to assess what patients and families need in the moment, and that requires understanding the developmental spectrum of the kids we do work with,” Carpenter said.

A Cincinnati Children’s Hospital, that understanding let clinicians design a medication adherence program to help recent teenage transplant patients keep up with their immunosuppressants and reduce the risk of losing their transplant. Using smart pillboxes, clinicians could detect adolescent patients who weren’t taking their pills and engage those patients to find out why.

Overwhelmingly, teens said they simply forgot to take their pills, but some couldn’t withstand the taste and others said pills were too large. For some teens, being the “kid who takes medications” can carry social stigma they wanted to avoid. Regardless of the barrier, the Cincinnati researchers said patient partnership was key.

“This is really focused on partnering with patients,” David Hooper MD, MS, medical director of Kidney Transplantation at Cincinnati Children’s, said in a previous interview. “Once they feel like we’re the enforcers, it sort of falls apart. It is an important culture that we’re trying to establish that we’re all partners in this. This is about identifying things that are getting in the way of taking medicine rather than assigning blame.”

Changes in adolescent patient engagement go beyond chronic disease management; even healthy kids have changing medical needs as they move toward adulthood. Reproductive and sexual health needs, as well as higher risk for drug and alcohol experimentation, become present in teen health encounters.

This means patient privacy gets a little sticky. As noted above, parents and guardians play a huge role in patient engagement when a kid is very young. But when that kid becomes a teen, it isn’t always beneficial for the parent to be present.

Most pediatricians ask for time alone with teenage patients, a fairly standard practice that is not surprising for caregivers. This strategy is instrumental for facilitating open patient-provider communication, leaving the teenager to feel free of judgment or repercussions from parents for certain health-related behaviors.

But the advent of health IT has complicated matters. The patient portal—a critical tool for patient engagement outside the clinic or hospital—will contain clinical notes from an encounter, and a pediatric patient might not want her parents to see that.

Proxy patient portals have become common workarounds, with organizations offering parents or guardians a limited view of the patient portal. This allows for teen patient privacy and instills a sense of autonomy in the patient.

These proxy tools have seen limited uptake, in part because not every parent or teen really knows what the proxy portal is. The onus will be on healthcare providers or administrators to explain the purpose of the proxy account to parents of teenagers.

Ultimately, each of these measures should help drive pediatric patient health and wellness and prepare them for their lives as adults. Supporting goal-setting that carries into adulthood and the freedom to have an open patient-provider relationship will be key to patient engagement as the child ages.

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