Views of children,parents,and health-care providers on pediatric disclosure of medical errors

Abstract

Despite the prevalence of medical errors in pediatrics, little research examines stakeholder perspectives on the disclosure of adverse events, particularly in the case of children’s own perspectives. Stakeholder perspectives, however, are integral to informing processes for pediatric disclosure. Building on a systematic review of the literature, this article presents findings from a series of focus groups with key pediatric stakeholders where perspectives were sought on the disclosure of medical errors. Focus groups were conducted with three stakeholder groups. Participants included child members of the Children’s Council from a large pediatric hospital (n = 14), parents of children with chronic medical conditions (n = 5), and health-care providers including physicians, nurses, and patient safety professionals (n = 27). Children acknowledged various disclosure approaches while citing the importance of children’s right to know about errors. Parents generally identified the need for full disclosure and the uncovering of hidden errors. Health-care providers were concerned about the process of disclosure and whether it always served the best interest of the child or family. While some health-care providers addressed the need for more clarity in pediatric policies, most stakeholders agreed that a case-by-case approach was necessary for supporting variations in how medical errors are disclosed.

Keywords

Child disclosure medical errors parents patient safety

Introduction

Medical errors in pediatric settings are growing at an alarming rate (Matlow et al., 2012; Sharek and Classen, 2006). In the United States, a systematic review revealed that over an 11-year period, the greatest number of pediatric errors occurred with children between the ages of 5 and 9 (Bourgeois et al., 2009). The American Academy of Pediatrics (2016) has called attention to these ongoing concerns by affirming that ‘pediatric adverse events are frequent occurrences, with significant patient morbidity and mortality’ (p. 2).

When a medical error occurs in pediatric settings, a number of individuals are affected: the child, his or her family, and the health-care team. In turn, the process of pediatric disclosure is influenced by a composite of variables: the child’s desire to know, his or her cognitive and emotional capacities, parent perspectives on disclosure, the roles of health-care providers, policies within and across institutions, organizations and regions, and the degree of risk or harm associated with the event (Koller et al., 2016). Accordingly, the disclosure of medical errors in pediatrics is a nuanced and often complex matter.

Despite the prevalence of medical errors, pediatric patients as key stakeholders are absent from the discourse and research in this area (Koller et al., 2016). According to the United Nations Convention on the Rights of the Child (1989), the American Academy of Pediatrics (2010), and the Canadian Paediatric Society (2004), children have a right to information and participation in decision-making regarding their health. Therefore, the absence of children’s perspectives in the empirical literature precludes the development of guidelines and policies that adhere to ethical practices that recognize children’s participation rights.

The duty to disclose errors is integral to the American and Canadian Medical Associations’ codes of ethics. For the most part, regulatory bodies and patient safety organizations provide limited guidelines for practice (Matlow et al., 2006) requiring pediatricians to take greater initiative and prepare for future adverse events by developing policies and procedures for disclosure (American Academy of Pediatrics, 2016). Moreover, minimal guidance and poor training on disclosure prevents informed practice and challenges the work of patient safety and health-care providers who are required to disclose errors to parents and their children (Truog et al., 2011).

Examples from international policy and legislation show that some nations have specific recommendations for pediatric disclosure. The UK’s National Patient Safety Agency policy Being Open (2009) contains a specific section pertaining to pediatrics. It outlines that while patients who have attained legal age of maturity to give consent to treatment (in the United Kingdom—16 years), younger children are capable of understanding and can also give consent, and be involved directly in disclosure discussions. According to the UK National Patient Safety Agency’s Review of Patient Safety for Children and Young People (2009), ‘building relationships with children and their families through the use of good communication and listening skills was seen as vital to providing supportive and safe care’ (p. 25). The report later recommends that health-care professionals working with children should communicate with the child directly, using language that is both accessible and age-appropriate (p. 28).

Similarly, the Australian Open Disclosure Framework (2013) states that:

‘the clinical team should assess the involvement of young people in the open disclosure process on a case-by-case basis, taking account of whether the child is mature enough to receive the information and having regard for the wishes of the young person and the parents, where appropriate’. (p. 31)

Conversely in the United States, recent disclosure guidelines as outlined in the Safe Practices for Better Healthcare (2010) published by the National Quality Forum suggest that ‘the patient and, as appropriate, the family should receive timely, transparent, and clear’ information regarding an adverse event but does not include any specific recommendations for pediatric disclosure practices (p. 22).

Given the complexities associated with pediatric disclosure, consultations with key knowledge users present a necessary first step in addressing current gaps in research and practice. Stakeholder participation, therefore, can serve to improve services, enhance decision-making, and promote democratic processes (Longtin et al., 2010; Sinclair, 2004). The World Health Organization (2017) reasserts the necessity of engaging patients and families for safer health care, in order to enhance patient well-being and improve the efficiency of health-care systems. Acknowledging various perspectives, particularly those of pediatric patients, is therefore essential for formulating best practices and policies.

The purpose of this article is to present findings from a series of focus groups that were conducted following a systematic review of the research on pediatric disclosure (Koller et al., 2016). The review elucidated a range of themes associated with pediatric disclosure and stakeholder perspectives on the process. Findings from the review were presented to stakeholders in a series of focus groups for further examination and critique. Focus group participants comprised physicians, nurses, administrators working in risk management/patient safety, representatives from patient safety organizations, children, and parents. Our goal was to capture diverse perspectives on pediatric disclosure, and to identify gaps in our knowledge for best practices and policy uptake.

Theoretical framework

Recognizing that adverse events are often rooted in systemic issues, the framework of a fair and just culture promotes transparency among health-care providers and removes the fear of blame and reprimand (Connor et al., 2007; Gallagher and Mazor, 2015). When health-care providers feel safe to disclose mistakes, it allows for discussion, critical analysis, and investigation into preceding events or circumstances, and the organization is often able to conceive and establish new preventative measures (Connor et al., 2007). According to the American Academy of Pediatrics, a fair and just culture framework allows for ‘compassionate disclosure of its mistakes to those who have suffered harm from those mistakes’ (Steering Committee on Quality Improvement and Management and Committee on Hospital Care, 2011: 1201) and, therefore, can foster benefits for staff and patients. The fair and just culture framework also states that informed input from patients is essential in creating a safe environment (Connor et al., 2007). In contrast, pediatric settings may not always apply the same guidelines for disclosure essentially leaving pediatric settings bereft of the benefits associated with transparency and trust building with health-care providers that accompany the just culture principals.

According to Section 13 of the UN Convention on the Rights of the Child, children have the right to ‘receive and impart information and ideas of all kinds’ (UN General Assembly, 1989: 4). This right is likely to be violated or not upheld in pediatric settings because of the complexity and uncertainty around disclosure of adverse events, in fact, children are often excluded from many aspects of decision-making surrounding their care (Kolaitis et al., 2016). Moreover, the just culture framework expresses a commitment to obtaining all points of view and using new information to improve the care environment (Connor et al., 2007). This research was guided by just culture principles and its relevance to pediatric settings. Recognizing all patients as important stakeholders requires them to be informed and consulted when developing care and error prevention plans.

Methods

Focus groups were selected as the data collection method using semi-structured questions to encourage open discussion of this complex topic. In addition, we chose a method known as consensus methodology which provides knowledge users with multiple exposures to the data and engages them in an iterative process (Ager et al., 2010). Separate focus groups were conducted with three sets of stakeholders where themes from the literature were introduced and revisited throughout the sessions providing opportunities to reengage and build on concepts surrounding the main themes. We hoped to generate a rich discussion where identification of gaps and emerging issues could be linked and explored in such a way as to create new knowledge. These discussions culminated in recommendations for future research and policy. In particular, we included child and youth perspectives in this research on patient safety as a way of acknowledging their participatory rights in health care.

Participants

The study employed purposive sampling methods, whereby specific groups of stakeholders were invited to participate in a focus group. Participants included 5 parents of pediatric patients from the Family Centered Care Advisory Council (FCCAC), 14 children and adolescents (current patients) from the Children’s Council at one large pediatric facility, and 27 members of the Patient Safety Collaborative Committee from the Canadian Association of Paediatric Health Centres (CAPHC).

Each stakeholder group (parents, children, health-care providers) was aligned with a particular council and associated mandate. The FCCAC is comprised of 26 volunteers who are committed to enhancing family-centered care practices at the children’s hospital. The FCCAC meets monthly to consult on various hospital policies, initiatives, and plans. The five members included in this study were all parents of previous pediatric patients. Similarly, the Children’s Council is a group of 15 patients (aged 9–17), with the mandate to strengthen collaborative partnerships between patients, the hospital, and the community, and to advance care by providing a patient voice and perspective on hospital programs and plans. For example, they consult on proposed projects, generate ideas to welcome patients, and support community groups. In both of these cases, focus groups were held on dates that aligned with the councils’ monthly meetings.

CAPHC is a national organization that seeks to promote the best health-care delivery in Canadian pediatric settings. The 27 participants in this study were members of the Patient Safety Collaborative Committee comprised of physicians, nurses, and patient safety and risk management experts.

Recruitment

Ethics approval was received from the university and hospital research ethics boards prior to recruitment. Members of the CAPHC Patient Safety Collaborative Committee were invited to a consultative session during their annual conference. Prior to the conference, organizers sent an email to attendees. Emails included information on the study, consent for participation in a focus group session and an electronic copy of the systematic literature review (Koller et al., 2016). At the meeting, the goals of the study were reiterated, and consent forms were administered with opportunities for questions.

Hospital facilitators of both the FCCAC and the Children’s Council shared information about the study during one of their meetings prior to the proposed focus group date. Absentee members received a phone call and follow-up email with details of the study. Participants were informed that attendance during the focus group portion of the meeting was voluntary. Ample opportunities were provided for participants to ask questions before and during the focus group. Exclusion criteria included members of the FCCAC and the Children’s Council who have experienced a medical error or were currently experiencing acute health concerns.

Setting and design

We conducted a focus group with pediatric health-care providers and safety experts at the CAPHC annual conference. Two separate focus groups with families and children were held within boardrooms at the hospital in Toronto, Ontario, Canada. In all cases, focus groups began with a PowerPoint presentation of themes from a systematic review of the literature on pediatric disclosure and a summary of current Canadian and international policies (Koller et al., 2016). Themes derived from the literature included physicians citing the need for more training on disclosure and associated fears of litigation, parents generally wanting to be informed of all errors, and the minimal amount of research addressing child perspectives. The presentation of themes was followed by a series of semi-structured questions aimed at eliciting stakeholder experiences and perspectives on the issues.

For each stakeholder group, the presentation was adjusted to suit the participants, particularly in the case of the Children’s Council. Involving young participants as key informants was a unique aspect of this study and child-friendly research-based methods were used to promote free expression. Children and adolescents began the focus group with an icebreaker game where all members were asked to contribute to a group drawing. Efforts were made throughout the focus group to ensure all participants had a chance to share their views despite the range of age and ability.

In the case of the largest focus group (CAPHC), participants created their own group discussion while sitting at round tables. Each table was given a digital recorder, and research team members circulated around the room facilitating discussions. Each group was asked to rank themes from the literature and policy review in the order of priority. They discussed each of the themes in light of their own insights and identified any discrepancies based on their experiences. The groups then reconvened and shared their respective rankings. A discussion of additional themes followed, and the research team presented a summary of the key perspectives shared during the session. In the case of the Children’s Council, participants were asked to break into pairs to further refine their key impressions of the literature. Due to the smaller number of parents in their focus group, an open discussion ensued. The discussion in the parents’ group was focused on their views and preferences for disclosure.

Analysis

Data analysis followed a six-stage thematic analysis method described by Braun and Clarke (2006). Braun and Clarke (2006) define thematic analysis as a method for identifying, analyzing, and reporting patterns within data. Themes were determined from a series of meetings with the research team where transcripts and field notes were analyzed.

Transcribed data from all of the focus groups were transferred to NVivo 11 to support the management of further analysis. Field notes taken during the meetings were also uploaded as memos. From this process, a series of codes emerged. Initially, 132 codes were identified. The relationships between themes were examined and resulted in the grouping and re-grouping of themes, until all categories appeared reflective of the overall data. Following further analysis, data reduction through the refinement of themes and categories resulted in 32 codes. All 32 codes were summarized in a codebook for subsequent review by the entire research team. Individual team members examined the codebook prior to a team meeting where the themes were discussed. The prevalence rates of each of the themes, sub-categories, and negative case examples were listed in a coding report to ensure accurate representation of the data for further in-depth analysis and manuscript development. Data from the three groups were compared and contrasted across similar or overlapping themes. Table 1 includes a list of major code categories and sample responses.

Table 1.

Summary of coding categories and sample response(s).

Coding category	Focus group data source(s)	Sample response(s)
Prior to disclosure
Whether to disclose	HCP	‘Is it fair to disclose if there are no consequences?’ (HCP)
Harm and error severity	HCP, P	‘It’s like “no harm, no foul”’ (P)
Family dynamics	HCP, P, C	‘Every family dynamic is going to be different’ (P) ‘We have to be sensitive to the relationship between parent and child’ (HCP)
Child’s coping style/ capacity assessment	HCP, P, C	‘Children at various different developmental stages, we’re not even discussing mental health or cognitive ability as a diagnosis’ (P)
The disclosure process
Who discloses	HCP, P	‘Parents know the guy wasn’t there, wonder why he’s talking when he had nothing to do with event. Erodes trust’ (HCP)
Reactions to current literature: Concerns/gaps
Disclosure challenges	HCP, P, C	‘When you’re talking about a mistake that’s hard to deliver, it’s really important that they know how to communicate to a kid’ (C) ‘We haven’t really nailed disclosure well, period. Much less about how to include children’ (HCP)
Training and education	HCP, P, C	‘Maybe the training of the doctors should be when to seek help when they need it’ (P) ‘Physicians want more training on disclosure’ (HCP)
Case-by-case approach	HCP, P, C	‘No one-size fits all is best’ (P) ‘It really depends on the case and the family and stuff’ (C)
Policies and lack of research	HCP, P, C	‘There should be research on kids’ opinions because, you know, that can help them with future things or something like that’ (C) ‘Change needed in both hospital culture and bureaucracy’ (HCP)
Recommended practices
Listening	HCP, P, C	‘Sometimes parents and children do not feel listened to’ (HCP) ‘Sometimes the way you look or your age it makes people not listen to you as much’ (C)
Apologies	HCP, P, C	‘I think apologies don’t really count unless you really mean it’ (C)
Follow-up	HCP, P, C	‘Making sure it doesn’t happen again is very much a priority for patients and families’ (HCP) ‘A nurse said I remember your son, I remember what happened and I want you to know that we made changes. That meant everything’ (P)
Emergent themes
Children’s right to know	C	‘It’s happening to me so I would like to be addressed and discuss what should happen next’ (C)
Hidden or ‘Secret’ errors	HCP, P, C	‘More prevalent than we would like to think’ (HCP) ‘I have my own secret idea of what happened in the last surgery’ (P)

Note: HCP: health-care provider; C: child; P: parent.

Results

In an effort to emulate customary practices in disclosure, themes are presented here to convey a process that normally takes place before and after disclosure. As a consequence, themes begin with issues related to whether or not to disclose, and who discloses. Data regarding stakeholder reactions to the current literature (gaps and concerns) are also reviewed. Part of this data included stakeholder recommendations for future practice and research initiatives. Finally, data that spontaneously emerged through the course of focus group discussions will be shared with particular emphases on themes related to children’s rights and suspected or hidden errors.

Variables to consider prior to disclosure

Whether to disclose

While the duty to disclose errors is integral to the Canadian and American Medical Associations’ codes of ethics, our discussion illuminated the complexity surrounding the decision to disclose. Despite ethical obligations, however, this process is rarely straightforward for practitioners. Health-care providers discussed the ethics of disclosure, wondering whether honesty is always the best policy: ‘what if [disclosure] causes anxiety for nothing?’ Indeed, health-care providers shared several concerns regarding the decision to disclose, namely notions of harm and severity, as well as parent and child capacity.

Harm and error severity

In most cases, health-care providers agreed that if harm was caused to the patient, proceeding to disclosure was an ethically sound decision. However, concern was also expressed in the case of a near-miss or a low-severity error with no harm done to the patient in that disclosure could cause added stress to the patient and family, thus leading to more harm than the actual error. The data analysis revealed that this was a prominent ethical dilemma for health-care providers, and the one with no clear-cut solutions. Within this context, some cited the importance of consulting with bioethics committees to aid in such decisions.

Family dynamics

A predominant consideration for health-care providers in the pre-disclosure phase involved an understanding of family dynamics. Because families were unique, disclosure processes needed to be flexible and nuanced in order to be most helpful. A particular concern was the parents’ state of mind and their ability to handle potentially upsetting information, which could lead to a delay in disclosure. Data from focus groups with the health-care providers and Children’s Council members revealed that pediatric patients could deal more effectively with a medical error than parents who were exhibiting high levels of anxiety. Parents did not discuss the option of their child being made aware of an error prior to them learning about it.

Health-care providers highlighted additional concerns regarding parents who shielded information regarding errors from their children. This often placed them in a difficult situation, particularly when they were aware of a child’s wish and ability to understand medical events. Children’s Council members agreed that some children would be interested in knowing, while others may not. Furthermore, one child argued that, in the case of conflicting views, ‘the opinion of the patient has a bigger point than parents, just because mainly patients have to live with it for the rest of their lives’. While health-care providers did not offer a definitive solution to potential conflict between parent and child preferences, several children reiterated that the child’s wish should be considered paramount in disclosure situations overriding the desire of the parents to withhold information.

Child’s coping style and capacity assessment

Additional child variables involved the child’s coping style and whether some children were capable of processing complex health information. Data from the Children’s Council focus group revealed that it may be easier for some children to cope when all the information are given: ‘it’s easier for me to deal […] when I know as much about the situation as possible’, while another child said ‘To make a responsible decision, you have to be informed’. Most children on the council expressed similar views on the benefits of knowing, while one participant cited the burden of added stress which could affect overall coping. Of the three groups of stakeholders, only members of the Children’s Council cited the importance of children’s agency in regulating their own reactions to medical errors.

Capacity assessment was identified by health-care providers as an important variable when deciding whether or not to disclose. While capacity assessment in the context of pediatrics often refers to the child’s capacity, health-care providers used the term to broadly describe both parents’ and children’s capacity to receive information about medical errors. Some described experiences in which parents or other family members exhibited high levels of stress that prevented them from immediate disclosure. Others related capacity assessment predominantly to the severity of the error in that highly stressed parents would likely not benefit from receiving information about a near miss or an error that caused little or no harm.

Children similarly discussed their parents’ stress levels and that health-care providers often focused on children’s capacity to process the information rather than evaluating parents’ coping. The majority of children expressed confidence in their capacity to receive and handle information about medical errors and appreciated when health-care providers took notice: ‘they understood that I understood what was going on me, myself, and my body’. A comparison between the three stakeholder groups showed that only the child participants expressed confidence in children’s ability to receive and process information about errors.

The disclosure process

Who discloses

There was some discrepancy between who should disclose a medical error to the patient and family. Health-care providers expressed some discomfort with having the physician disclose the error when the physician had nothing to do with the error. As one physician noted:

Parents know the guy wasn’t there, wonder why he’s talking when he had nothing to do with event. He might be trying to be genuine and sincere, but parents don’t see why he’s the one talking to them. Erodes trust.

Another health-care provider added that the ‘person who knows about it should be the one to disclose. Yet there is no process/legal guidelines for this’.

Reactions to current literature: Gaps and concerns

All participants received information on current trends in the research and practice as extracted from a previous systematic review of pediatric disclosure processes and guidelines (Koller et al., 2016). Reactions to the themes from the systematic review consisted of responses to the following areas: challenges associated with disclosing errors to children and their parents; health-care provider training and education; a case-by-case approach to disclosing errors; and the lack of policy and research on child perspectives.

Disclosure challenges with children and parents

In general, pediatric health-care providers shared their concerns regarding challenges they face with disclosure of medical errors. As one health-care provider indicated: ‘We haven’t really nailed disclosure well, period. Much less about how to include children’. In particular, these challenges emanated from how to manage parent and child preferences for disclosure. Overall, one-third (33%) of the health-care providers in the focus group believed that knowing how to deal with parents and children either together or separately remained the most significant issue in pediatric disclosure. As one physician noted: ‘the relationship between the parent and the child is another element, we have to be sensitive to that relationship and the relationship between the patient and the physician’. Similarly, one Children’s Council member offered: ‘the top problem is parents and kids can think differently about how information is shared’.

Health-care provider training and education

All three stakeholder groups believed that education was integral in moving forward on effective disclosure practices. Health-care providers, in particular, believed that the prevalence of a punitive culture made it even more necessary to have additional training on disclosure. One provider summarized the discussion by saying ‘we have to know what we’re doing, and do it well and professionally. We need to be aware of process such as who is involved’. A participant from the Children’s Council offered:

I think it’s important for people who are doctors and nurses to be educated on how to talk to kids because I find it infuriating when I have the maturity to handle it, and they are addressing me as if I am much younger than I am.

Another child agreed, ‘doctors sometimes talk down to us, so I think they need more experience talking to kids so they get a real life sense of how to deal with these situations’. Similarly, parents noted that health-care providers ‘needed more training, and they need to know who they are talking to, like sensitivity training’.

Case-by-case approach

A majority of health-care providers believed that disclosure required a case-by-case approach, so that several variables could be accounted for prior to sharing information with a family. One parent reinforced this belief by saying ‘no one-size fits all is best’. When international disclosure policies were shared with the children, many preferred a case-by-case analysis such as the one currently applied in Australia. One child offered:

the reason why I like Australia is because situations are really different and stuff and it depends on how mature the patient is and stuff and it’s not like mainly you have to be that certain age to get that information so that’s why I would rather go with the Australia option.

Policies and lack of research

Finally, approximately one-fifth of the health-care providers cited the lack of appropriate policies that specifically target pediatric issues as a main concern. As one health-care provider noted: ‘we need more process and consistency, and it might be different for children. Can’t think of one place in Canada that has a process of disclosure, there is huge inconsistency’. While another health-care provider stated ‘We have strict guidelines for other things such as child abuse, and the same should be for errors’. Health-care providers were not overly concerned about the lack of research on child perspectives despite the challenges they described in having to talk to children and families about errors. Although some believed that research with children of different ages was important (24%), only (8%) ranked this issue as a major problem.

Recommended practices

All participants were asked to provide suggestions for future disclosure practices based on their own stakeholder perspectives. Participants generally agreed that disclosure usually occurred when errors are discovered, and that certain elements should be a part of the process. Elements of the process included listening, apologizing for the error, and providing adequate support and resources for follow-up after disclosure.

Listening

Both children and parents expressed the importance of having health-care providers listen to them. In particular, parents wanted health-care providers to take note of their observations regarding their child’s overall care in order to prevent future errors. Parents also acknowledged the significance of being taken seriously during disclosure conversations. One mother recalled feeling undervalued when noticing an error: ‘they kinda put it on me that I was the one with the problem and that actually I shouldn’t even be really bothered by this’.

Similarly, members of the Children’s Council expressed a need to have health-care providers listen to them during discussions and that this would also be important in the case of disclosing errors. As one child noted, ‘they talk to my mom while I’m right there in the room’. In summary, both children and parents shared experiences of communication with health-care providers that left them bereft of emotional support or information.

Apologies

Saying sorry was, in part, an area that spontaneously emerged through the focus group discussions. When asked about what health-care providers should do in the case of an error, all three groups cited the need for an apology. Several parents highlighted the importance of having the wrongdoing acknowledged and that an apology offered transparency, accountability, and emotional support.

Most children also valued an apology (‘I think an apology is necessary’), while some were more interested in the sentiment than the words: ‘if they don’t feel apologetic then there’s no point in apologizing’. Another child added:

I don’t particularly like just spoken apologies because I feel like they are just empty words, like people don’t normally mean it, if you do something to make up for it then it’s better than just saying you’re sorry because that really means nothing.

Similarly, one child added ‘it depends on if it was a big mistake, like I think the apology can somehow make things worse sometimes’. Apologies did not emerge during discussions with health-care providers.

Follow-up

Many health-care providers noted the significance of having a plan following disclosure and shared several suggestions for ethical practice. They believed in repeatedly checking in with the family because ‘no follow up means nothing for family, and no information to the organization about whether they moved forward’. Indeed, follow-up was regarded as both a courtesy to the family, but more importantly as an ethical stance that supported prevention of future errors. Health-care providers cited that the disclosure process was an ‘ongoing one’ and it was ‘not done, unless parents say it’s done’. Parents reiterated the importance of knowing if something had been done at a systems level to ensure the error would not happen again. As one parent noted: ‘an error is softened by a plan of action’.

Emergent themes

Children’s right to know

In discussions regarding disclosure, the majority of children noted they had a right to know about health-care events that directly affected them. All child participants agreed that, although some children may not want to know, they had a right to have their preferences respected and considered by their families and health-care providers. Various reasons to support their right to information included the need to know what has happened to their bodies, having access to emotional support, being involved in error prevention, and ensuring that appropriate follow-up has been made by the hospital.

Hidden errors

All three stakeholder groups spontaneously discussed the existence of errors that were perceived as ‘hidden’ or ‘secret’. Health-care providers recognized that these errors were ‘more prevalent than we would like to think’ leading others to add that ‘feelings of things getting done on the sly was likely to breed distrust, and might lead the family to feel hyper vigilant’.

For children, hidden errors were those that families were aware of, while health-care providers appeared to ignore or act as though nothing had happened. One parent offered her own story: ‘I have my own secret idea of what happened in the last surgery, we got sent home, but I knew something was wrong so I brought him back to the hospital’. Other parents corroborated the existence of suspected or hidden errors by offering their own stories and experiences. Parents also discussed reasons for choosing not to share their suspicions with health-care staff, particularly in cases where little or no harm occurred.

Discussion

Findings from this study support the inclusion of just culture principles in promoting transparency and accountability as necessary prerequisites for ethical care. Parents and children have a right to learn about errors in ways that champion their needs and preferences while knowing the system has executed appropriate follow-up measures. In particular, children believed that knowledge about an error fostered coping and trust in the health-care system. Patient trust, therefore, has the potential for being eroded in the case of suspected or hidden errors which are never disclosed. Additional research is required to address the gap in our understanding regarding suspected or hidden errors. In order to promote a culture of greater transparency, we need to examine the degree to which these errors are prevalent, and how they may impact the relationships between families and health-care providers.

The decision of whether to disclose a medical error, therefore, is less straightforward than the Canadian and American Medical Associations’ codes of ethics would suggest (Matlow et al., 2006). Complexities associated with level of harm and severity, and the capacity of parent and child play significant roles in how disclosure unfolds. Partial disclosure, or the provision of information over time can mitigate the emotional distress to parents and children, particularly in cases where the error is neither severe nor requiring urgent action. In any event, disclosure can be approached from various vantage points, ranging from what is deemed ethical or practical given the situation. As a consequence, this renders the decision of whether or not to disclose an error a complex undertaking.

For this reason, a case-by-case approach is likely the most sensitive and effective method for pediatric disclosures. While additional guidance from specific pediatric policies and practices is needed, data from our study supports a nuanced approach where key variables are considered, before, during, and after disclosure. Coyne and Harder (2011) refer to the need for a ‘situational’ perspective in pediatric decision-making: ‘parents and professionals should view children as individuals with needs that vary according to each situation’ (p. 316). Although truth telling remains a central feature of disclosure, the ethical premise of ‘doing no harm’ must also be considered, where the needs and coping abilities of the parties involved demand a distinctive and careful approach. In other words, truth telling should not produce additional harm.

Limitations

Due to the qualitative nature of the study, these findings are not intended to be generalized. Participant views signify predominantly North American or ‘westernized’ notions of pediatric health-care delivery where patient and family centered care are associated with ethical principles. Members of the Children’s Council and FCCAC are mandated to advocate for the rights and preferences of hospitalized children and their parents. Accordingly, these participants had extensive experience navigating care in pediatric settings and understood the role of power dynamics. This was particularly notable in the emergent data on ‘secret errors’. In some cases, children’s and parents’ acute detection of medical errors propelled them to remain silent and go along with the health-care providers when the error did not cause sufficient harm.

While access to a range of perspectives is generally advantageous, the composition of the health-care provider focus groups was less homogenous than one would prefer. The 27 health-care providers in this study were members of the CAPHC Patient Safety Collaborative Committee which comprised physicians, nurses and patient safety, and risk management experts. It is possible that other concerns or priorities could have emerged from focus groups that only contained individuals from the same profession.

Conclusion

This study validates the need for future research on the perspectives of children and adolescents. To begin with, how do children and adolescents view medical errors or mistakes within health care? Are they generally open to learning about errors, and what circumstances prevent them from participating in these discussions? Obtaining an elevated understanding of children’s needs and perspectives will assist in policies that can strengthen pediatric best practices.

Taken together, overarching considerations of family dynamics, parents versus child preferences, and individual coping styles necessitate a case-by-case approach to the disclosure of errors. Data from our study suggest striking a balance between specific guidelines to be applied in pediatrics while discerning particular needs and preferences that serve both the context and the individuals involved. Therefore, rather than aiming for prescriptive and specific policies for pediatric disclosure, policy makers should generate a comprehensive list of considerations based on key stakeholder perspectives and current research that can cultivate and advance just culture environments.

Footnotes

Acknowledgements

The authors gratefully acknowledge the support of the Canadian Association of Paediatric Health Centres (CAPHC), the Canadian Patient Safety Institute (CPSI), and The Hospital for Sick Children’s Family Centered Care Advisory Council and Children’s Council. A special thanks to Elaine Orrbine and Lisa Stromquist from CAPHC and Ioana Popescu and Carola Bravo from the CPSI for their support. Assistance with data collection and literature preparation was provided by Morgane LePouesard and Amanda Buckingham.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Canadian Institutes of Health Research, grant #132282.

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