Annually, thousands of children in the United States experience serious preventable health care harm.1 Although children are at an increased risk of health care harm compared with adults, they also have an important protective factor: their families. Cognizant of this, we believe that improvements in pediatric safety could be accelerated through better utilization of patient and family partnerships.
Patients and families play an important role in health care safety in the hospital and the community as contributors to, detectors of, and mitigators of medical error.2 Parents may not understand or have the skills to manage their children’s home medication regimen, resulting in errors. Families are, however, well placed to detect errors and are equipped with extensive knowledge and astute observations of the child and their conditions. Finally, informed and empowered families can be important advocates for their children and can prevent errors from reaching and subsequently harming their children, acting as error safety nets.3–5
In this article, we will discuss how unsafe health care continues to harm children and how families can influence care safety, giving both parent (J.W.) and health care professionals’ (P.R. and K.E.W.) perspectives. We will discuss promising examples of family partnership for safety in hospital, outpatient, and community settings for children with varying health needs. Additionally, we will discuss barriers to optimal partnering and how we might build on positive examples and better tap into families’ unique potential to coproduce safer care.
The Recalcitrant Problem of Unsafe Pediatric Health Care
Thousands of children in the United States continue to suffer harm from serious safety events in health care, such as central line infections and ventilator-associated events.1,3 Medication errors are a public health issue, with ∼63 358 children <6 years old experiencing out-of-hospital medication errors in the United States annually.6
Communication errors underpin many serious safety events.2,5,6 These include communication errors between doctors, nurses, pharmacists, parents, and patients. Despite ∼60% of pediatric safety events being deemed preventable (eg, through better communication) the number of children harmed has remained unchanged since the millennium.1,2 Hence, the Solutions for Patient Safety network, a network of US children’s hospitals collaborating to reduce serious safety events, was created.1 Partnership with patients and families underpins their improvement strategy, and they have made significant gains in safety.1
Existing safety systems, such as incident reporting systems and root cause analyses, do not routinely seek input from families, missing important partnership opportunities. Promising examples of family partnership improving care, such as the ImproveCareNow Learning Network, are provided throughout.7 Improved study of these examples, adapting them to target safety, and adoption where successful, could reduce health care harm to children.
Partnering With Families for Hospital Error Prevention
Incident reporting systems offer an important lens on safety by revealing error types and their contributory factors.2 Unfortunately, families cannot routinely contribute to them despite Khan et al3 highlighting parental reporting capabilities in their study.4,5,8 For example, 1 parent reported a 12-hour delay in the administration of intravenous furosemide for a symptomatic pleural effusion. With family reporting, error detection increased by 16%, and 49% of family-reported errors were not present in medical records.3 Indeed, parents’ alternative bedside perspective means they often detect errors otherwise not apparent for future prevention. Below is an additional example of how eliciting the parental perspective can reduce the risk of unsafe care (Example 1).
Example 1 (J.W.): Providing Context to Reduce the Risk of Unsafe Care
Kyle is immunosuppressed after a liver transplant and therefore has a low baseline absolute neutrophil count. As a result of this, when Kyle is unwell, I know his white blood cell count may be within the normal range; however, for Kyle, this is relatively high. Occasionally, I have had to highlight this to emergency department doctors.
Brady et al9 tested the feasibility of a family-activated rapid response team and found that 23% of family activations resulted in ICU transfer compared with 60% of clinician activations. Only 2.9% of activations came from families. Although considerably fewer family activations resulted in ICU transfer, this represents an important cohort of deteriorating children whose families became more involved in the safety of their care as a result of family activation. The purpose of activation is not solely for ICU transfer but for early detection and prevention of deterioration (including cardiorespiratory arrest). Although it was beyond this study’s scope to determine impact on error rates, it highlights families’ capabilities with activating teams sensibly. Additional benefits may include improved staff readiness to activate teams, positive effects on safety culture, and helping families to feel they are a part of the team.
Electronic platforms can provide parents with access to medical records (Example 2) and a means to ask providers questions in real time, that is, as issues occur and through an online portal. The potential benefits to the provider–family relationship and safety are highlighted in Example 2.
Example 2 (J.W.): The Benefits of Electronic Medical Record Access
I had access to Kyle’s electronic medical record to monitor immunosuppression levels. His level was within range but relatively high. He was hospitalized with pneumocystis pneumonia. I voiced my concern about the level with his doctor and asked if this could be the cause. He agreed to lower Kyle’s Rapamune range. Access to this information was empowering and helped to make me feel like a valued team member. Since this change, Kyle has had no episodes of pneumocystis pneumonia and remains healthy.
In some institutions, parental concern forms part of the Pediatric Early Warning Score, an observational scoring tool of vital signs used to quantify deterioration risk. Elsewhere, families write in medical records and have respectful challenge cards that are used to highlight safety concerns. These are promising partnership examples; however, their impact on safety has not yet been demonstrated and requires further study. We should also be careful not to compound disparities by encouraging partnership disproportionately, for example, with only literate families.
Partnership With Families for Error Prevention in the Community
In the outpatient setting, as opposed to the hospital setting, the epidemiology of medical errors and the parental role in their etiology and prevention differs.2 Communication failures underpin many community errors (where parents have greater responsibility).2,5,6 Parental error is a common cause of community medication errors.5 Nationally, poison control centers receive a phone call about a pediatric home medication error every 8 minutes.6 Among parents of children with chronic conditions, rates of medication errors at home are as common as in the hospital.6 Such errors include communication errors, sometimes resulting in both parents administering medications (double dosing).4,5
Parents of medically complex children frequently develop their own error-prevention strategies, such as spreadsheets, to support home care.4,5 Among parents of children with chronic conditions, authors of a cohort study found that those using support tools for home medication management had half the errors as those who did not.5
In addition, parents are capable of coassessing error risk in the home and coproducing interventions to reduce it. Walsh et al,8 for example, coproduced a Web-based medication support tool with and for parents of children with cancer. They found it useful in improving safe administration of hazardous medications, for example, by reminding them to wear gloves when handling chemotherapy. Although this study was not powered to reveal an impact on error rates, it provides an important example of how community safety could be improved through family partnership.
Barriers to Effective Partnership
Given the potential safety benefits, why are innovative examples of coproduction slow to be scaled up and spread? Although the benefits of partnership may seem logical, the practicalities of implementing systems to support it can be challenging. For example, the adoption of Cincinnati Children’s Hospital Medical Center’s family-activated medical response team was delayed by concerns over increased workload and opportunity cost.9
At the organizational level, a defensive culture can serve as a barrier to partnership.7,10 It can negatively influence staff attitude to partnership, parental comfort with partnership, and opportunity for error prevention, for example, by discouraging reporting of safety concerns.7
A hospital system may not be designed to engage, which hinders partnership at the frontline.10 The system may not provide frontline staff with sufficient support, training, or resources to effectively partner with families. More so, there may be no existing family-reporting system.
Poor continuity of care can also make it difficult for frontline staff to build relationships with patients and families. Having a therapeutic relationship built on trust and ease of communication encourages parents to ask questions and disclose medical errors for future prevention.7,10 Length and quality of parental experience with health care systems influence a parent’s willingness to disclose concerns.10 Below, J.W. shares how her cumulative experience with health care empowered her to intervene in her son’s care (Example 3).
Example 3 (J.W.): The Positive Effect of Health Care Experience
Kyle’s immune system was completely suppressed. His doctors explained that Kyle was to have no invasive procedures and specifically mentioned rectal temperature measurements. Kyle had a fever, and the resident ordered a rectal temperature. It was far enough into his ordeal that I felt empowered enough to say no. I am not sure I would have felt the same in the first few months.
Unfortunately, those with the worst experiences with important information to disclose for error prevention may be the least likely to disclose it.10 Parents often fear being labeled a “difficult parent” and report hesitancy engaging in challenging protective behaviors, such as voicing concerns directly to providers (as illustrated in Example 4) compared with anonymous reporting.10
Example 4 (J.W.): Fear of Being Labeled a Difficult Parent
Kyle was an inpatient because of rejection and was immunosuppressed. I noticed that the nurse caring for Kyle was also caring for a child who was in contact isolation, which required the nurse to wear a gown, gloves, and a mask. I was nervous but asked her if she could either drop Kyle or the other child. Kyle’s doctor jokingly made a comment the next day that I was working for the Centers for Disease Control and Prevention. I felt a little defensive and the need to explain my rationale.
This example reveals the importance of fostering a partnership to facilitate parents to raise concerns for redress regardless of their clinical validity.
Additional parental barriers to error prevention include insufficient confidence to contribute to conversations because challenging the hierarchy is daunting and because of feeling unqualified or ill equipped to understand medical jargon.10
Although we advocate for reciprocal partnership, it is important not to shift the burden of responsibility for error prevention to families. Patient safety is ultimately the responsibility of the health care system. Also, parent–child–health care provider relationships are heterogeneous, and some families may not wish to play a role. Family partnership should be flexible and tailored to the situation, child, and family.
In the future, as health care moves from a provider-centric to a coproduced health care service, patient and family involvement in ensuring safe care will grow accordingly.7 The coproduced ImproveCareNow Learning Network has seen an increase in inflammatory bowel disease remission rates across its 71 participatory systems from 60% to 79%. Indeed, many families welcome the opportunity to help the organization improve its overall safety. A system of coproduction enables the engagement of their diverse professional and medical expertise to innovatively improve care, including safety. However, we purpose that such a coproduction system could also facilitate family partnership specifically to prevent medical errors.
The engagement process is described as a continuum from awareness to participation, contribution, and ownership. Awareness of the importance of family partnership in ensuring safe care is already prevalent. Building on this awareness, family participation in improvement can be encouraged by empowering families to intervene to prevent errors in real time and by developing family-reporting systems. Currently, examples of effective coproduction of safer health care services with families are limited to early adopter centers. Widespread system redesign (incorporating learning from early adopters) could foster active and routine contribution from parents by providing participatory opportunities (eg, in root cause analyses). This could extend to building improvement capability among interested families. Organizational support can be used to provide a platform for such change by providing infrastructure to support parental codesign of safety interventions in home, ambulatory, and outpatient settings.
Health care systems need to coproduce pediatric safety with patients and families to effectively leverage their vast knowledge and expertise in improvement efforts and to realize the aspiration to which we are all aligned: to measurably improve the safety of care for children.
- Accepted April 24, 2018.
- Address correspondence to Philippa Rees, BSc (Hons), MPhil, MBBCh, Institute of Child Health University College London, 1st Floor, 30 Guilford St, London WC1N 1EH. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- Lyren A,
- Brilli RJ,
- Zieker K,
- Marino M,
- Muething S,
- Sharek PJ
- Walsh KE,
- Mazor KM,
- Stille CJ, et al
- Smith MD,
- Spiller HA,
- Casavant MJ,
- Chounthirath T,
- Brophy TJ,
- Xiang H
- Batalden M,
- Batalden P,
- Margolis P, et al
- Walsh KE,
- Biggins C,
- Blasko D, et al
- Brady PW,
- Zix J,
- Brilli R, et al
- Copyright © 2018 by the American Academy of Pediatrics