X is for Patient eXperience: The Patient Voice

Who are the experts on the hospital experience? Who knows how to make a medical procedure less stressful for a child? Is it the doctors… the nurses…the medical team… the child life specialists? While each of these professionals can provide insight and valuable perspective, the true experts are the patients and families who directly experience the hospital and clinic environment. As one patient stated, “Listen when we tell you something.” Patients have key insights into how to cope with stressful hospital events and what could make them easier. Our job is to listen to their voice, amplify it, and act.

“Central to any experience effort are the voices of, contributions from and partnerships with those receiving care” (Wolf, 2018, p. 9). It is imperative that hospital systems pursue a culture where patients’ feedback, thoughts, questions, concerns, and requests are sought out regularly. The collection of this data is only valuable if the hospital then turns it into actionable steps to influence change. One of the five value drivers of child life services is to “empower children and families to become informed, engaged, and active participants in their healthcare experiences” (Boles et al., 2020, p. 7). A challenge to all child life specialists is to take what they hear and learn from patients and implement changes in care for that patient and future patients. A key question for us all: How can we turn the patient voice into what drives our evidenced-based practice?

Children’s Mercy Kansas City has a multidisciplinary group, called the Family-Centered Care Specialty, whose primary mission is to capture the patient voice and utilize this voice to influence positive change. This specialty was developed in 2014 and is a committee that meets on a monthly basis. The committee includes various members of the Patient and Family Support Services section, including section leaders, child life specialists, and patient activity coordinators who are involved in patient care across inpatient, outpatient, and outlying campuses. The committee also includes ad hoc members from the Philanthropy Section, including members of the volunteer and guest services department. The Family-Centered Care Specialty has used various methods to collect the thoughts, feedback, and ideas of patients who have experienced care via different access points in our hospital system, including inpatient units, outpatient clinics, and emergency departments. The voice of these patients has been gathered through creative avenues, such as play activities, special patient events, one-on-one conversations, and question and answer sessions.

Recently, Children’s Mercy accelerated improvement efforts surrounding comfort during needle procedures, including increased emphasis on topical numbing medication usage and comfort positioning. The Family-Centered Care Specialty saw this as an opportunity to explore the patient perspective on comfort during procedures and developed an electronic survey to learn what patients would choose and advocate for when it comes to procedures.

Patient Survey

The electronic survey was conducted with 50 patients, ages 3-18 years, during a five month period. Participants included inpatients and outpatients in various areas of the hospital. Patients were either given an iPad to take the survey on their own or a child life specialist verbally asked the patient the
survey questions and documented their responses. Survey responses were gathered and stored via a secure database, REDCap. Questions included:

• If you could have anyone in the room to help you while you are having a procedure, who would it be?
• If you could choose how many people could be in the room while you are having a procedure, what number would you choose?
• Do you like being told about what is going to happen before a procedure?
• Who would you want to tell you about the procedure?
• What do you want to be told?
• Do you like to watch what is happening during a procedure?
• What do you choose to do instead of watching?
• Would you want numbing medication during a needle procedure?
• What is the most helpful thing to you when you have a procedure?
• What is the scariest thing to you about having a procedure?
• What else do you want us to know about helping kids with procedures?

Survey questions aimed to listen to the patient voice and examine patient preferences during procedures as well as desired coping support. In the following paragraphs, we summarize our key findings of the patients’ voice, focused on how the hospital’s culture can best support patients prior to and during procedures.

Results

According to a recent report from the Association of Child Life Professionals, “research demonstrates that there are benefits of allowing parents/caregivers to be present in medical settings” (Boles et al., 2020, p. 19). In our survey, the patients’ voice supported this finding; 86% of patients said having a parent/caregiver with them in the room would be the most beneficial during a procedure. When asked how many people patients would want in the room, 66% of patients stated they would want three or fewer people in the room during a procedure.

It has been previously documented that most patients want to know what is going to happen before a procedure (Breiner, 2009) and are better able to cope with the hospital experience when provided with developmentally appropriate preparation by a CCLS (Boles et al., 2020). In our survey, a patient stated, “it helps to know what will happen.” We found that 43% of patients voiced they would want a child life specialist to prepare them, and 50% of patients surveyed would want a nurse to tell them what was going to happen.

 Similar to our results, Lambert, Glacken, and McCarron (2013) noted “nursing personnel were identified as pivotal, interjecting, assisting, and making it easier for children to understand the medical team” (p. 346). When inquiring what patients would want to know prior to a procedure, our survey revealed that 72.1% of patients wanted to know what they would feel and how long the procedure would take, and 76.7% stated they would want to know what they needed to do during a procedure and if it would hurt.

When asked if patients would want to watch a procedure, the results were variable with 38% of patients stating they would watch, 36% stating they would not watch a procedure, and 26% stating they would sometimes watch a procedure. For those patients that expressed not wanting to watch the procedure, the two most identified alternative options were looking at something else and closing their eyes. Only one patient chose guided imagery as an alternative focus option during a procedure.

The results supported current hospital efforts to increase pain management and the use of topical numbing medication prior to needle procedures, finding that 100% of patients would want a topical numbing medication to be offered during future needle procedures. When provided choices for coping strategies and asked what would be the most helpful, the survey results indicated that 56% of patients would want to engage in deep breathing along with 60% of patients wanting to hold someone’s hand.

Survey results indicated that when patients were asked what the scariest thing about a procedure would be, 58% said pain was the scariest thing, 34% stated not knowing what would happen would be the scariest thing, and 30% said being held down would be the scariest thing. One patient stated: “be as gentle as you can and go through the steps with [the patient].”

Sharing the Patient Voice

The Family-Centered Care Specialty reviewed the data collected and created a document titled “Top 10 Things Patients Want YOU to Know about Procedures!” The document was shared with all 8,000+ hospital staff via an internal hospital website. This summary document put the patient voice into an easily digestible format for all staff to understand what patients would advocate for regarding procedures. It served as a call to medical staff, caregivers, and hospital administrators to take note, which many did. The medical team at Children’s Mercy posted numerous comments on the internal website supporting how important this patient voice is to the culture of Children’s Mercy. One staff nurse shared, “This is such a great reminder of who is really in charge of our cares....It’s all about the kids!” A psychologist commented, “It is fantastic to hear the voices of kids weighing in on this topic. Pain prevention is always important, individualizing the care for each child will help them feel the most comfortable during these routine procedures!” Another nurse stated, “This survey is such a meaningful look into what truly adds value to the care we deliver to young children and adolescents.” After reading the survey summary,
one medical provider consulted the Family-Centered Care Specialty to assess how they could further gather the patient voice to improve care and hospital processes centered around a specific procedure.

The results of our survey, the patient voice, supported core values and evidenced-based practice of child life professionals. The daily work of child life specialists involves asking patients about their experiences, preferences, and ideas. We hope that our small sample survey gives others the inspiration to take this daily work a step further, to create surveys or other methods to formally gather and amplify the voice of
our patients. Conducting this sort of investigation continues to uphold our commitment to the primary values of the child life profession, and our simple survey provided valuable feedback that impacted the care provided to the patients. We plan to continue using our survey results to expand education to other medical staff to make positive change throughout the hospital system. We will continue to learn from the most valuable resource in the hospital, the patients, and we encourage you to do the same.

Child Life Specialists surveyed 50 patients ranging in age from three to 18 years old on what helps them cope with procedures!

Patients were surveyed on inpatient units, in outpatient areas, and in the emergency department.

Top 10 things patients want YOU to know about procedures!

1. Of the patients that had a poke, 100% said yes or maybe they would want the numbing topical used again! “It’s not always used, even when I ask. It should always be offered.” — In response to what else do you want us to know about numbing agents.
2. 58% of the patients said the scariest thing was PAIN. Followed by 34% not knowing what will happen and 30% said being held down is the scariest thing.
3. 77.6% said YES when asked if they want to know what’s going to happen before a procedure.
4. 60% of patients said holding someone’s hand during a procedure is what helps the most! What else helps? 56% said taking deep breaths.
5. 86% of patients said a parent/caregiver when asked if they could have anyone in the room with them. 44% said a Child Life Specialist, 28% said their nurse, and 12% said other.
6. 38% said YES, they like to watch what’s happening during a procedure, 36% said no, and 26% said sometimes. A reminder that every patient is unique!
7. How many is too many? We asked patients how many people they want in the room! One person: 6% Two people: 32% Three people: 28% Four people: 16% Five people: 18%
8. 50% of patients want their NURSE to tell them about their procedure! 43% said the Child Life Specialist, 40% said parent/caregiver, and 15% said other. “Whoever’s going to do the procedure,” one patient requested.
9. 76.7% of patients want to know what THEY need to do during a procedure and if it will hurt.
10. 72.1% of patients want to know what they will feel and how long the procedure will take.

For more information on ways to help patients cope with procedures, ask a Child Life Specialist!