Article
Communication in pediatric critical care: A proposal for an evidence-informed framework
Journal of Child Health Care 1–10 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493514540817 chc.sagepub.com
Franco A. Carnevale Montreal Children’s Hospital, Canada
Catherine Farrell Hoˆpital Ste-Justine, Canada
Robin Cremer Hoˆpital Jeanne de Flandre, France
Sylvie Se´guret and Pierre Canouı¨ Hoˆpital Necker-Enfants-Malades, France
Francis Leclerc Hoˆpital Jeanne de Flandre, France
Jacques Lacroix Hoˆpital Ste-Justine, Canada
Philippe Hubert Hoˆpital Necker-Enfants-Malades, France
Abstract The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous qualitative studies, which included 30 physicians, 37 nurses, and 38 parents in France and Quebec (Canada). All three studies examined a mix of cases where children either survived or died. All data referring to communication between parents (and patients when applicable) and HCPs were examined to identity themes that related to communication. Thematic categories for parents and HCPs were developed. Three interrelated dimensions of communication were identified: (1) informational communication, (2) relational
Corresponding author: Franco A. Carnevale, McGill University, Wilson Hall (room 210), 3506 University St., Montreal, Quebec H3A 2A7, Canada. Email: [email protected]
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communication, and (3) communication and parental coping. Specific themes were identified for each of these 3 dimensions in relation to parental concerns as well as HCP concerns. This investigation builds on prior research by advancing a comprehensive analysis of PICU communication that includes (a) cases where life-sustaining treatments were withdrawn or withheld as well as cases where they were maintained, (b) data from HCPs as well as parents, and (c) investigations conducted in 4 different sites. An evidence-informed conceptual framework is proposed for PICU communication between parents and HCPs. We also outline priorities for the development of practice, education, and research. Keywords Communication, health care professionals, parents, pediatric critical care, pediatric intensive care unit
Introduction The quality of communication between health care professionals (HCPs) and patients and families is linked to improved outcomes in various medical settings (Levetown, 2008; Silverman et al., 2005). Communication is also recognized as a major factor in aggravating or reconciling ethical concerns in clinical care (Carnevale, 2005). Parental satisfaction with care provided for their critically ill children is strongly related to their communication experiences (Latour et al., 2008; Studdert et al., 2003). Parents seek continual access to information that is honest, understandable, and responsive to their questions, provided in an individualized manner in private spaces by HCPs who know them (Latour et al., 2008; McPherson et al., 2005; Meert et al., 2008). However, communication between HCPs and parents in the pediatric intensive care unit (PICU) is significantly challenged by a number of particular problems (see Supplementary Material 1 for an outline of these problems and relevant references; online version only). Although our own prior research examined life-sustaining treatment (LST) decision making for critically ill children, the importance of communication stood out throughout these investigations (Carnevale et al., 2006, 2007, 2012). Therefore, the aim of this investigation was to conduct a comprehensive examination of communication between parents and HCPs in the PICU. We performed a secondary analysis of data from our previous PICU research. Our analysis sheds new light on PICU communication because our research examined (1) ‘end of life’ (EOL) as well as life-prolonging cases (i.e. prior research focused predominantly on EOL decision making); (2) the perspectives of HCPs as well as parents; and (3) 2 geographical settings (France and Quebec, Canada), selected to compare the different approaches regarding parental roles in decision making. An evidence-informed conceptual framework for PICU communication was subsequently developed, based on this research, to orient practice, education, and research. This framework is presented in a latter section of this article.
Methods This study focused on a secondary analysis of data collected from three qualitative studies of PICU LST decision making, which we conducted in France and Quebec (Canada) (Carnevale et al., 2006, 2007, 2012). See Supplementary Material 2 for detailed descriptions of the study settings (online 2 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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Table 1. Parental and HCP concerns regarding communication. Parental concerns
HCP concerns
Informational communication Ensuring access to information Facing uncertainty Providing clear and understandable information Questioning how information should be presented to parents Relational communication Questioning the parental role Demonstrating respect to parents Serving as societal gatekeepers for critical Fostering trust care resources Attending to children’s wishes Wondering how the child’s wishes should Adapting the timing, content, and methods of information be considered to the parent’s emotional state Communication and parental coping Struggling with the consequences of one’s Preparing the parent for the future actions Attending to parents’ guilt Making decisions within group discussions Addressing disagreements in the treatment team Encountering relational difficulties between physicians and nurses
version only). The design, samples, analyses, and communication-related findings from the three original studies are outlined in Supplementary Material 3 (online version only). All three studies examined a mix of cases where the children either survived or died. The three studies complied with institutional research ethics requirements for each site. Whereas full research ethics board review was required for parts of the research involving parents, some of the settings provided an expedited review for research involving HCPs only. Full details are described in the original articles.
Analysis Data were examined to identity themes that related to communication between parents (and patients when applicable) and HCPs. Similar themes were grouped to form major thematic categories for parental concerns and HCP concerns (Table 1). Parental themes were derived from data obtained from parents, while HCP themes were derived from HCP data. When a theme was identified as subgroup specific (e.g. nurses only), it was highlighted.
Results Our secondary analysis identified 3 principal dimensions of communication in the PICU: (1) informational communication; (2) relational communication; and (3) communication and parental coping (Table 1). These are described below; starting with parent data followed by corresponding HCP data. Illustrative verbatim exemplars are listed in Supplementary Material 4 (online version only). Although the 3 dimensions are discussed separately, they are interrelated, as described below. 3 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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Informational communication An important aspect of communication related to the exchange of information. This was commonly construed as the unidirectional conveying of information by HCPs to parents. There was little mention of direct communication with child patients, likely because they are very young or unconscious due to their condition or sedation. This should be further investigated to determine whether this may also be attributable to ‘paternalistic’ exclusion of children (Canouı¨, 2004; Carnevale, 2012). Two components of informational communication were identified among parents: (a) ensuring access to information and (b) providing clear and understandable information. Parents identified physicians as key information sources, seeking that they be available to speak with them and answer their questions. Parents wanted clear explanations of what was happening to their child, in a language that parents could understand, without medical jargon. HCPs described treatment decision making in the face of uncertainty as highly distressing. This was amplified by their fear of making an error. In light of the complexity, sensitivity, and frequent uncertainty regarding patients’ condition, HCPs questioned how this information should be presented to parents. This questioning was intertwined with themes relating to relational communication and parental coping, which are discussed below. HCPs’ management of uncertain or ambiguous information sometimes conflicted with parents’ wishes for clear information. Parents were troubled when HCPs expressed uncertainty about the child’s condition or prognosis. They found this difficult to understand, which sometimes led to disturbing thoughts, wondering whether the HCPs were (a) withholding information, (b) not fully committed to their child’s care, or (c) not competent to manage their child’s condition. The expression of uncertainty by the HCPs compromised communication by challenging the relational dimension of the exchange between parents and HCPs. This is described below.
Relational communication Parents and HCPs revealed the relational underpinnings of their communication. In addition to exchanging information, parents and HCPs formed varying types of (favorable or unfavorable) relationships with each other. Parental accounts of their communication with HCPs were intertwined with how respectful and trustworthy they found the HCPs. Parents appreciated when HCPs demonstrated consideration toward their concerns and wishes; this helped parents feel respected. Moreover, parents’ perception of truthful disclosure by HCPs fostered parental trust toward them. HCPs also made reference to their relationships with parents. HCPs commonly questioned when and how parents should be involved in treatment decision making, implicitly questioning how they should communicate with parents about this. HCPs raised fundamental questions about parents’ roles in treatment decisions. It was unclear how HCPs communicated with parents about these questions. Parents and HCPs highlighted the importance of attending to children’s wishes when they were able to express them, although these were infrequently solicited. Parents’ understanding of informational communication was continually interpreted through a relational lens that helped them assess the quality of the information. When HCPs’ respectfulness and/or trustworthiness were judged to be inadequate, with regard to parents’ expectations, then they were generally less satisfied with the quality of the information they received. Conversely, 4 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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when parents were dissatisfied with the information they received, this commonly led to relational dissatisfaction. Parents’ sense of respect and trust was also compromised when HCPs stated that some treatments were being limited because of budgetary constraints. On the other hand, HCPs struggled with the fact that they were ‘societal gatekeepers’ for utilization of critical care resources. They wondered if they should reflect this in their communication. This problem may be particularly meaningful for settings with socialized health care, such as Canada and France. These HCPs can sometimes be in a double bind between providing optimal care to individual patients while they are also expected to responsibly manage limited publically funded resources to ensure timely access to critical care for the entire population that they serve. Parents appreciated HCPs’ attempts to adapt communication to their emotional state; noting that some HCPs tailored the timing, content, and methods they used to convey information. Parents highlighted that they were frequently in a state of shock, which sometimes made it difficult for them to hear, understand, and retain information. The way group meetings with parents were conducted was sometimes problematic. This refers to the practice of holding multidisciplinary meetings with parents to review their children’s condition and treatment decisions. Some parents felt overwhelmed when they had to meet a large number of HCPs at once.
Communication and parental coping Parent–HCP communication also related to parental coping (note: no specific theoretical conception of coping was used, and coping was construed according to the participants’ accounts). Parents’ disclosures revealed HCP communication practices that affected their ability to cope with their child’s critical illness, while HCPs described communication considerations that related to parental coping. Parents desired information about their child that would help them prepare for the future. HCP information was vital toward their ‘mental reconstruction’ of what life would be like. Parents were sometimes devastated by the way HCPs presented this information, feeling that all possible hope was being crushed. HCPs were worried about the future lives of the child and family, about the hardships that would result from the critical illness, and about the child and family consequences that would result from their actions. These worries were largely borne in private, struggling to ascertain what information about the future would be beneficial for the family and how these future impacts should relate to current treatment planning. Parents and HCPs agreed that HCPs should be attentive to parental guilt about the child’s situation and seek ways to minimize parents’ sense of culpability. This was particularly true when LST decisions were discussed. Parents highlighted disagreements within the treating team as a major source of distress. Parents were exposed to disagreements among PICU staff as well as between PICU staff and other services; during formal encounters (e.g. bedside rounds) or informal one-on-one discussions with HCPs. It made parents very uncomfortable to hear varying views about the child’s condition and how he/she should be treated. These disagreements were confusing for parents, leading them to wonder who they should trust, who knew best, or who was most committed to helping their child. HCPs also reported concerns relating to treating team communication. They generally sought to optimize team consensus and cohesion in decision making and communication through group discussions, recognizing the importance of resolving disagreements for parents. Communication 5 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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and the general working relationship between physicians and nurses were highlighted by HCPs as concerns. Whereas many physicians reported that nursing participation was sought, nurses generally felt excluded from team discussions and communication (de Saint Blanquat et al., 2014).
A conceptual framework for communication in the PICU The above results have led to the development of the following conceptual framework for communication between HCPs and parents in the PICU, to address the concerns identified in this investigation. We build on prior research to advance a comprehensive PICU-based evidenceinformed framework. In particular, we build on (a) Meyer and associates’ development of relational communication (Meyer et al., 2009), (b) Levetown’s elements of communication for general pediatrics (i.e. informativeness, interpersonal sensitivity, and partnership building) (Levetown, 2008), as well as (c) our own research described above. This framework is an integrated interpretation of research evidence that can help orient clinical practice, education, and future research. Ideally, child patients should be integrated into such a framework, but existing research evidence does not provide sufficient data to develop an adequate child perspective on PICU communication (see Discussion). The proposed conceptual framework for HCP–parent communication in the PICU has 3 dimensions: informational, relational, and parental coping. These dimensions are interrelated and irreducible. Informational communication. PICU communication involves reciprocal exchanges of information between HCPs and parents as well as among HCPs and between parents themselves. All participants bring their own background understandings of the situation, drawing on their respective experiences, knowledge, beliefs, and values. Informational exchange is required for the determination of an accurate diagnosis, treatment planning, and fulfilling the ethical requirements for consent. The HCPs contribute their clinical expertise, while parents contribute their specific knowledge about the individual child (e.g. child’s past responses to medical problems and treatment; child’s expressed wishes). This diversity of perspectives can challenge the treatment decision-making process, as participants may draw on divergent understandings of the child’s condition that can be difficult to reconcile, that is, divergences that can lead to misunderstandings and relational tensions. This diversity of understandings can be additionally complex when children themselves also participate in the communication. Effective communication requires a bridging of these understandings to develop shared understandings and agreements in treatment planning. The first author (Franco A. Carnevale) has described this process as ‘rapprochement’ (Carnevale, 2005). Relational communication. Communication between HCPs and parents also expresses and affects relationships among participants. Effective informational communication requires relational qualities such as empathy, respect, trust, as well as shared decision-making authority and responsibility. Participants are not passive information recipients. They are continually appraising the information provider to judge the merits of the information provided. This appraisal is reciprocal, that is, HCPs appraise parents and vice versa. Moreover, although relationships are a means toward effective informational communication, they can also be an end in themselves. For many HCPs and parents, their relationships were an important source of comfort or stress, depending on the quality of those relationships. Finally, empathy is a crucial feature of relational communication. Empathy should not be understood solely in terms of ‘emotional attunement’ (e.g. HCPs’ understanding of parents’ emotional states). Empathy implies a comprehensive understanding of the perspective of 6 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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others (Schultz and Carnevale, 1996). Empathic HCPs seek to grasp how parents understand their situation as well as how they feel about it. Decisional authority and responsibility for treatment planning is an especially complex aspect of relational communication. There are legal, ethical, and practice standards that define the decisional authority and responsibility held by HCPs (which varies across professions and jurisdictions), parents, as well as patients when they are capable of participating. However, these standards tend to be general. It is unclear how they should be applied in specific circumstances or how differing views should be reconciled (e.g. should a physician’s role in decision making be advisory or directive?). Emerging models for shared decision making offer promising directions for addressing these concerns (Kon, 2010). Communication and parental coping. The dominant conception of PICU communication is rooted in the legal and ethical requirements for information about the child’s condition and treatment plan required for parental (and child when applicable) consent to treatment. Consent should be ‘informed’. It is also recognized that there should be disclosure of information relating to occurrences of ‘medical error’ or other adverse events (Garbutt et al., 2007; Hobgood et al., 2005). Care recipients and their surrogate decision makers are considered entitled to receive this information. However, HCPs and parents also highlight that information needs to be provided in a manner that is helpful and minimally harmful. Communication is a form of clinical intervention. In addition to fulfilling ‘contractual obligations’ for consent, communication is also a means for fostering parental coping with the current situation (similarly, for communication with patients). Critical illness is profoundly distressing for parents (and children); information can be an important support for coping with this distress. The manner in which information is provided by HCPs can affect parents’ sense of personal responsibility or guilt toward the child’s condition, as well as how they balance a ‘realistic’ grasp of the situation with their ‘hoped-for’ outcomes. HCP communication should balance sensitivity to these difficult coping challenges, among others, with truthfulness regarding the child’s condition. This balance is frequently difficult to achieve.
Discussion Our research makes an important contribution to knowledge in pediatric critical care. This investigation is particularly innovative because it includes cases where LST were withdrawn or withheld as well as cases where they were maintained. This research includes data from HCPs as well as parents in 4 different settings. Our findings are corroborated by prior research. For example, Levetown’s general overview of communication in pediatrics highlighted some of the PICU-specific challenges described in this report, for example, ‘breaking bad news’, disclosure of medical error, and coping among parents of critically ill children (Levetown, 2008). Meyer and associates examined relational communication in the PICU, highlighting the importance of honesty, accessibility, and attention to parental emotions (Meyer et al., 2009). Meert and associates’ investigation of parents’ perspectives on physician–parent communication regarding a child’s death in the PICU identified themes that correspond with our findings; for example, the importance of availability, attentiveness, honesty, comprehensiveness of information, and affect; attending to the complexity of the vocabulary used, pacing of information, and body language; while preventing contradictory information and false hope (Meert et al., 2008). Additional PICU research led by the first author (Franco A. Carnevale) 7 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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in Italy, involving HCPs and parents, identified features of ‘good’ communication that further corroborate our findings; for example, providing clear and complete information on a regular basis, presented in a humane manner, with attention to the parent’s emotional state (Carnevale et al., 2011). Our investigation builds on this prior research by advancing a comprehensive and integrated analysis of PICU communication between HCPs and parents. The proposed framework can guide future practice, education, and research relating to PICU communication. We recommend that PICU settings review their practices to promote explicit attention to the 3 dimensions of communication highlighted in this investigation. Education programs can be effective means for ensuring this form of practice development. For example, Meyer and associates have documented and evaluated a 1-day workshop model, using simulation exercises, for promoting relational communication among HCPs (Meyer et al., 2009). Other educational programs can also provide useful methods for developing skills to address the features of communication that we have described (Lorin et al., 2006; Silverman et al., 2005). Future initiatives can adapt educational models such as these, as well as published communication standards (Davidson et al., 2007; Levetown, 2008), to promote the framework that we have developed. Previous work examining specific communication challenges can be adapted for this framework as well, for example disclosing medical error (Garbutt et al., 2007; Hobgood et al., 2005) or breaking bad news (Hsiao et al., 2007; Levetown, 2008; Meert et al., 2008).
Limitations The principal limitation of this research was that communication was not the primary focus of the initial studies in which data were collected. Communication was examined through a secondary analysis. Moreover, this research is based on research in four PICUs in France and Quebec, Canada. Therefore, the generalizability of our findings will need to be established in subsequent research, using representative sampling.
Future research development We identified knowledge gaps in the existing literature to highlight priorities for future research. Future PICU communication research should examine informational communication practices (e.g. what information should be provided; in what manner; by whom?), documentation of communication, communication continuity, how children themselves should participate in communication (Canouı¨, 2004; Carnevale, 2012), how family conferences affect the 3 dimensions of communication (Curtis and White, 2008; Drago et al., 2013; October et al., 2013), dealing with disagreements or conflicts, if or when it is permissible to withhold some information, the significance of other informational sources for parents (e.g. Internet; community groups), how shared decision making affects communication and professional responsibility (Kon, 2010; Feudtner, 2007), outcomes associated with better communication (e.g. more accurate diagnosis; improved adherence to treatment plan), and how communication among HCPs or among family members affects HCP–parent communication.
Conclusion The research reported in this article will help advance evidence-informed practices and education regarding communication with parents in the PICU. Despite these important contributions, there is 8 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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a need for further research and evaluation of strategies for promoting the development of PICU communication. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Supplemental material The online data supplements are available at http://chc.sagepub.com/content/by/supplemental-data. References Canouı¨ P (2004) L’information de l’enfant et de sa famille: ve´cu des enfants et des parents. Archives de Pe´diatrie 11(supl 1): 32–41. Carnevale FA (2005) Ethical care of the critically ill child: a conception of a ‘‘thick’’ bioethics. Nursing Ethics 12: 239–252. Carnevale FA (2012) Listening authentically to youthful voices: a conception of the moral agency of children. In: Storch JL, Rodney P and Starzomski R (eds) Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed). Toronto: Pearson Education, pp. 315–332. Carnevale FA, Benedetti M, Bonaldi A, et al. (2011) Understanding the private worlds of physicians, nurses, and parents: a study of life-sustaining treatment decisions in Italian pediatric critical care. Journal of Child Health Care 15(4): 334–349. Carnevale FA, Canoui P, Cremer R, et al. (2007) Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec. Pediatric Critical Care Medicine 8(4): 337–342. Carnevale FA, Canouı¨ P, Hubert P, et al. (2006) The moral experience of parents regarding life-support decisions for their critically ill children: a preliminary study in France. Journal of Child Health Care 10(1): 69–82. Carnevale FA, Farrell C, Cremer R, et al. (2012) Struggling to do what is right for the child: pediatric lifesupport decisions among physicians and nurses in France and Quebec. Journal of Child Health Care 16(2): 109–123. Curtis JR and White DB (2008) Practical guidance for evidence-based ICU family conferences. Chest 134: 835–843. Davidson JE, Powers K, Hedayat KM, et al. (2007) Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American college of critical care medicine task force 2004–2005. Critical Care Medicine 35(2): 605–622. de Saint Blanquat L, Cremer R, Elie C, et al. (2014) Opinions des soignants des re´animations pe´diatriques franc¸aises sur l’application de la loi du 22 avril 2005 dite «Loi Le´onetti» [French law related to patient’s rights and end of life: Paediatric Intensive Care Unit’s health professionals ‘s opinions]. Archives de Pe´diatrie 21(1): 34–43. Drago MJ, Aronson PL, Madrigal V, et al. (2013) Are family characteristics associated with attendance at family centered rounds in the PICU? Pediatric Critical Care Medicine 14(2): e93–e97. Feudtner C (2007) Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatric Clinics of North America 54: 583–607. Garbutt J, Brownstein DR, Klein EJ, et al. (2007) Reporting and disclosing medical errors: pediatricians’ attitudes and behaviors. Archives of Pediatrics and Adolescent Medicine 161(2): 179–185. 9 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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Hobgood C, Tamayo-Sarver JH, Elms A, et al. (2005) Parental preferences for error disclosure, reporting, and legal action after medical error in the care of their children. Pediatrics 116(6): 1276–1286. Hsiao JL, Evan EE and Zeltzer LK (2007) Parent and child perspectives on physician communication in pediatric palliative care. Palliative and Supportive Care 5: 355–365. Kitzinger J (1995) Qualitative research: Introducing focus groups. British Medical Journal 311: 299–302. Kon AA (2010) The shared decision-making continuum. Journal of the American Medical Association 304(8): 903–904. Latour J, van Goudoever J and Hazelzet J (2008) Parent satisfaction in the pediatric ICU. Pediatric Clinics of North America 55: 779–790. Levetown M (2008) American academy of pediatrics committee on bioethics: communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 121: e1441–e1460. Lorin S, Rho L, Wisnivesky JP, et al. (2006) Improving medical student intensive care unit communication skills: a novel educational initiative using standardized family members. Critical Care Medicine 34: 2386–2391. McPherson M, Sachdeva R and Jeferson L (2005) Development of a survey to measure parent satisfaction in a pediatric intensive care unit. Critical Care Medicine 6: 578–584. Meert KL, Eggly S, Pollack M, et al. (2008) Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine 9: 2–7. Meyer EC, Sellers DE, Browning DM, et al. (2009) Difficult conversations: improving communication skills and relational abilities in health care. Pediatric Critical Care Medicine 10: 352–359. October TW, Watson AC and Hinds PS (2013) Characteristics of family conferences at the bedside versus the conference room in pediatric critical care. Pediatric Critical Care Medicine 14(3): e135–e142. Schultz DS and Carnevale FA (1996) Engagement and suffering in responsible caregiving: on overcoming maleficence in health care. Theoretical Medicine 17(3): 189–207. Silverman J, Kurtz S and Draper J (2005) Skills for Communicating with Patients. Oxford: Radcliffe Publishing. Strauss A and Corbin J (1997) Grounded Theory in Practice. Newbury Park: Sage. Studdert D, Burns J, Mello M, et al. (2003) Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics 112: 553–558.
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Communication in pediatric critical care: A proposal for an evidence-informed framework
Journal of Child Health Care 1–10 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493514540817 chc.sagepub.com
Franco A. Carnevale Montreal Children’s Hospital, Canada
Catherine Farrell Hoˆpital Ste-Justine, Canada
Robin Cremer Hoˆpital Jeanne de Flandre, France
Sylvie Se´guret and Pierre Canouı¨ Hoˆpital Necker-Enfants-Malades, France
Francis Leclerc Hoˆpital Jeanne de Flandre, France
Jacques Lacroix Hoˆpital Ste-Justine, Canada
Philippe Hubert Hoˆpital Necker-Enfants-Malades, France
Abstract The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous qualitative studies, which included 30 physicians, 37 nurses, and 38 parents in France and Quebec (Canada). All three studies examined a mix of cases where children either survived or died. All data referring to communication between parents (and patients when applicable) and HCPs were examined to identity themes that related to communication. Thematic categories for parents and HCPs were developed. Three interrelated dimensions of communication were identified: (1) informational communication, (2) relational
Corresponding author: Franco A. Carnevale, McGill University, Wilson Hall (room 210), 3506 University St., Montreal, Quebec H3A 2A7, Canada. Email: [email protected]
Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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communication, and (3) communication and parental coping. Specific themes were identified for each of these 3 dimensions in relation to parental concerns as well as HCP concerns. This investigation builds on prior research by advancing a comprehensive analysis of PICU communication that includes (a) cases where life-sustaining treatments were withdrawn or withheld as well as cases where they were maintained, (b) data from HCPs as well as parents, and (c) investigations conducted in 4 different sites. An evidence-informed conceptual framework is proposed for PICU communication between parents and HCPs. We also outline priorities for the development of practice, education, and research. Keywords Communication, health care professionals, parents, pediatric critical care, pediatric intensive care unit
Introduction The quality of communication between health care professionals (HCPs) and patients and families is linked to improved outcomes in various medical settings (Levetown, 2008; Silverman et al., 2005). Communication is also recognized as a major factor in aggravating or reconciling ethical concerns in clinical care (Carnevale, 2005). Parental satisfaction with care provided for their critically ill children is strongly related to their communication experiences (Latour et al., 2008; Studdert et al., 2003). Parents seek continual access to information that is honest, understandable, and responsive to their questions, provided in an individualized manner in private spaces by HCPs who know them (Latour et al., 2008; McPherson et al., 2005; Meert et al., 2008). However, communication between HCPs and parents in the pediatric intensive care unit (PICU) is significantly challenged by a number of particular problems (see Supplementary Material 1 for an outline of these problems and relevant references; online version only). Although our own prior research examined life-sustaining treatment (LST) decision making for critically ill children, the importance of communication stood out throughout these investigations (Carnevale et al., 2006, 2007, 2012). Therefore, the aim of this investigation was to conduct a comprehensive examination of communication between parents and HCPs in the PICU. We performed a secondary analysis of data from our previous PICU research. Our analysis sheds new light on PICU communication because our research examined (1) ‘end of life’ (EOL) as well as life-prolonging cases (i.e. prior research focused predominantly on EOL decision making); (2) the perspectives of HCPs as well as parents; and (3) 2 geographical settings (France and Quebec, Canada), selected to compare the different approaches regarding parental roles in decision making. An evidence-informed conceptual framework for PICU communication was subsequently developed, based on this research, to orient practice, education, and research. This framework is presented in a latter section of this article.
Methods This study focused on a secondary analysis of data collected from three qualitative studies of PICU LST decision making, which we conducted in France and Quebec (Canada) (Carnevale et al., 2006, 2007, 2012). See Supplementary Material 2 for detailed descriptions of the study settings (online 2 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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Table 1. Parental and HCP concerns regarding communication. Parental concerns
HCP concerns
Informational communication Ensuring access to information Facing uncertainty Providing clear and understandable information Questioning how information should be presented to parents Relational communication Questioning the parental role Demonstrating respect to parents Serving as societal gatekeepers for critical Fostering trust care resources Attending to children’s wishes Wondering how the child’s wishes should Adapting the timing, content, and methods of information be considered to the parent’s emotional state Communication and parental coping Struggling with the consequences of one’s Preparing the parent for the future actions Attending to parents’ guilt Making decisions within group discussions Addressing disagreements in the treatment team Encountering relational difficulties between physicians and nurses
version only). The design, samples, analyses, and communication-related findings from the three original studies are outlined in Supplementary Material 3 (online version only). All three studies examined a mix of cases where the children either survived or died. The three studies complied with institutional research ethics requirements for each site. Whereas full research ethics board review was required for parts of the research involving parents, some of the settings provided an expedited review for research involving HCPs only. Full details are described in the original articles.
Analysis Data were examined to identity themes that related to communication between parents (and patients when applicable) and HCPs. Similar themes were grouped to form major thematic categories for parental concerns and HCP concerns (Table 1). Parental themes were derived from data obtained from parents, while HCP themes were derived from HCP data. When a theme was identified as subgroup specific (e.g. nurses only), it was highlighted.
Results Our secondary analysis identified 3 principal dimensions of communication in the PICU: (1) informational communication; (2) relational communication; and (3) communication and parental coping (Table 1). These are described below; starting with parent data followed by corresponding HCP data. Illustrative verbatim exemplars are listed in Supplementary Material 4 (online version only). Although the 3 dimensions are discussed separately, they are interrelated, as described below. 3 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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Informational communication An important aspect of communication related to the exchange of information. This was commonly construed as the unidirectional conveying of information by HCPs to parents. There was little mention of direct communication with child patients, likely because they are very young or unconscious due to their condition or sedation. This should be further investigated to determine whether this may also be attributable to ‘paternalistic’ exclusion of children (Canouı¨, 2004; Carnevale, 2012). Two components of informational communication were identified among parents: (a) ensuring access to information and (b) providing clear and understandable information. Parents identified physicians as key information sources, seeking that they be available to speak with them and answer their questions. Parents wanted clear explanations of what was happening to their child, in a language that parents could understand, without medical jargon. HCPs described treatment decision making in the face of uncertainty as highly distressing. This was amplified by their fear of making an error. In light of the complexity, sensitivity, and frequent uncertainty regarding patients’ condition, HCPs questioned how this information should be presented to parents. This questioning was intertwined with themes relating to relational communication and parental coping, which are discussed below. HCPs’ management of uncertain or ambiguous information sometimes conflicted with parents’ wishes for clear information. Parents were troubled when HCPs expressed uncertainty about the child’s condition or prognosis. They found this difficult to understand, which sometimes led to disturbing thoughts, wondering whether the HCPs were (a) withholding information, (b) not fully committed to their child’s care, or (c) not competent to manage their child’s condition. The expression of uncertainty by the HCPs compromised communication by challenging the relational dimension of the exchange between parents and HCPs. This is described below.
Relational communication Parents and HCPs revealed the relational underpinnings of their communication. In addition to exchanging information, parents and HCPs formed varying types of (favorable or unfavorable) relationships with each other. Parental accounts of their communication with HCPs were intertwined with how respectful and trustworthy they found the HCPs. Parents appreciated when HCPs demonstrated consideration toward their concerns and wishes; this helped parents feel respected. Moreover, parents’ perception of truthful disclosure by HCPs fostered parental trust toward them. HCPs also made reference to their relationships with parents. HCPs commonly questioned when and how parents should be involved in treatment decision making, implicitly questioning how they should communicate with parents about this. HCPs raised fundamental questions about parents’ roles in treatment decisions. It was unclear how HCPs communicated with parents about these questions. Parents and HCPs highlighted the importance of attending to children’s wishes when they were able to express them, although these were infrequently solicited. Parents’ understanding of informational communication was continually interpreted through a relational lens that helped them assess the quality of the information. When HCPs’ respectfulness and/or trustworthiness were judged to be inadequate, with regard to parents’ expectations, then they were generally less satisfied with the quality of the information they received. Conversely, 4 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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when parents were dissatisfied with the information they received, this commonly led to relational dissatisfaction. Parents’ sense of respect and trust was also compromised when HCPs stated that some treatments were being limited because of budgetary constraints. On the other hand, HCPs struggled with the fact that they were ‘societal gatekeepers’ for utilization of critical care resources. They wondered if they should reflect this in their communication. This problem may be particularly meaningful for settings with socialized health care, such as Canada and France. These HCPs can sometimes be in a double bind between providing optimal care to individual patients while they are also expected to responsibly manage limited publically funded resources to ensure timely access to critical care for the entire population that they serve. Parents appreciated HCPs’ attempts to adapt communication to their emotional state; noting that some HCPs tailored the timing, content, and methods they used to convey information. Parents highlighted that they were frequently in a state of shock, which sometimes made it difficult for them to hear, understand, and retain information. The way group meetings with parents were conducted was sometimes problematic. This refers to the practice of holding multidisciplinary meetings with parents to review their children’s condition and treatment decisions. Some parents felt overwhelmed when they had to meet a large number of HCPs at once.
Communication and parental coping Parent–HCP communication also related to parental coping (note: no specific theoretical conception of coping was used, and coping was construed according to the participants’ accounts). Parents’ disclosures revealed HCP communication practices that affected their ability to cope with their child’s critical illness, while HCPs described communication considerations that related to parental coping. Parents desired information about their child that would help them prepare for the future. HCP information was vital toward their ‘mental reconstruction’ of what life would be like. Parents were sometimes devastated by the way HCPs presented this information, feeling that all possible hope was being crushed. HCPs were worried about the future lives of the child and family, about the hardships that would result from the critical illness, and about the child and family consequences that would result from their actions. These worries were largely borne in private, struggling to ascertain what information about the future would be beneficial for the family and how these future impacts should relate to current treatment planning. Parents and HCPs agreed that HCPs should be attentive to parental guilt about the child’s situation and seek ways to minimize parents’ sense of culpability. This was particularly true when LST decisions were discussed. Parents highlighted disagreements within the treating team as a major source of distress. Parents were exposed to disagreements among PICU staff as well as between PICU staff and other services; during formal encounters (e.g. bedside rounds) or informal one-on-one discussions with HCPs. It made parents very uncomfortable to hear varying views about the child’s condition and how he/she should be treated. These disagreements were confusing for parents, leading them to wonder who they should trust, who knew best, or who was most committed to helping their child. HCPs also reported concerns relating to treating team communication. They generally sought to optimize team consensus and cohesion in decision making and communication through group discussions, recognizing the importance of resolving disagreements for parents. Communication 5 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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and the general working relationship between physicians and nurses were highlighted by HCPs as concerns. Whereas many physicians reported that nursing participation was sought, nurses generally felt excluded from team discussions and communication (de Saint Blanquat et al., 2014).
A conceptual framework for communication in the PICU The above results have led to the development of the following conceptual framework for communication between HCPs and parents in the PICU, to address the concerns identified in this investigation. We build on prior research to advance a comprehensive PICU-based evidenceinformed framework. In particular, we build on (a) Meyer and associates’ development of relational communication (Meyer et al., 2009), (b) Levetown’s elements of communication for general pediatrics (i.e. informativeness, interpersonal sensitivity, and partnership building) (Levetown, 2008), as well as (c) our own research described above. This framework is an integrated interpretation of research evidence that can help orient clinical practice, education, and future research. Ideally, child patients should be integrated into such a framework, but existing research evidence does not provide sufficient data to develop an adequate child perspective on PICU communication (see Discussion). The proposed conceptual framework for HCP–parent communication in the PICU has 3 dimensions: informational, relational, and parental coping. These dimensions are interrelated and irreducible. Informational communication. PICU communication involves reciprocal exchanges of information between HCPs and parents as well as among HCPs and between parents themselves. All participants bring their own background understandings of the situation, drawing on their respective experiences, knowledge, beliefs, and values. Informational exchange is required for the determination of an accurate diagnosis, treatment planning, and fulfilling the ethical requirements for consent. The HCPs contribute their clinical expertise, while parents contribute their specific knowledge about the individual child (e.g. child’s past responses to medical problems and treatment; child’s expressed wishes). This diversity of perspectives can challenge the treatment decision-making process, as participants may draw on divergent understandings of the child’s condition that can be difficult to reconcile, that is, divergences that can lead to misunderstandings and relational tensions. This diversity of understandings can be additionally complex when children themselves also participate in the communication. Effective communication requires a bridging of these understandings to develop shared understandings and agreements in treatment planning. The first author (Franco A. Carnevale) has described this process as ‘rapprochement’ (Carnevale, 2005). Relational communication. Communication between HCPs and parents also expresses and affects relationships among participants. Effective informational communication requires relational qualities such as empathy, respect, trust, as well as shared decision-making authority and responsibility. Participants are not passive information recipients. They are continually appraising the information provider to judge the merits of the information provided. This appraisal is reciprocal, that is, HCPs appraise parents and vice versa. Moreover, although relationships are a means toward effective informational communication, they can also be an end in themselves. For many HCPs and parents, their relationships were an important source of comfort or stress, depending on the quality of those relationships. Finally, empathy is a crucial feature of relational communication. Empathy should not be understood solely in terms of ‘emotional attunement’ (e.g. HCPs’ understanding of parents’ emotional states). Empathy implies a comprehensive understanding of the perspective of 6 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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others (Schultz and Carnevale, 1996). Empathic HCPs seek to grasp how parents understand their situation as well as how they feel about it. Decisional authority and responsibility for treatment planning is an especially complex aspect of relational communication. There are legal, ethical, and practice standards that define the decisional authority and responsibility held by HCPs (which varies across professions and jurisdictions), parents, as well as patients when they are capable of participating. However, these standards tend to be general. It is unclear how they should be applied in specific circumstances or how differing views should be reconciled (e.g. should a physician’s role in decision making be advisory or directive?). Emerging models for shared decision making offer promising directions for addressing these concerns (Kon, 2010). Communication and parental coping. The dominant conception of PICU communication is rooted in the legal and ethical requirements for information about the child’s condition and treatment plan required for parental (and child when applicable) consent to treatment. Consent should be ‘informed’. It is also recognized that there should be disclosure of information relating to occurrences of ‘medical error’ or other adverse events (Garbutt et al., 2007; Hobgood et al., 2005). Care recipients and their surrogate decision makers are considered entitled to receive this information. However, HCPs and parents also highlight that information needs to be provided in a manner that is helpful and minimally harmful. Communication is a form of clinical intervention. In addition to fulfilling ‘contractual obligations’ for consent, communication is also a means for fostering parental coping with the current situation (similarly, for communication with patients). Critical illness is profoundly distressing for parents (and children); information can be an important support for coping with this distress. The manner in which information is provided by HCPs can affect parents’ sense of personal responsibility or guilt toward the child’s condition, as well as how they balance a ‘realistic’ grasp of the situation with their ‘hoped-for’ outcomes. HCP communication should balance sensitivity to these difficult coping challenges, among others, with truthfulness regarding the child’s condition. This balance is frequently difficult to achieve.
Discussion Our research makes an important contribution to knowledge in pediatric critical care. This investigation is particularly innovative because it includes cases where LST were withdrawn or withheld as well as cases where they were maintained. This research includes data from HCPs as well as parents in 4 different settings. Our findings are corroborated by prior research. For example, Levetown’s general overview of communication in pediatrics highlighted some of the PICU-specific challenges described in this report, for example, ‘breaking bad news’, disclosure of medical error, and coping among parents of critically ill children (Levetown, 2008). Meyer and associates examined relational communication in the PICU, highlighting the importance of honesty, accessibility, and attention to parental emotions (Meyer et al., 2009). Meert and associates’ investigation of parents’ perspectives on physician–parent communication regarding a child’s death in the PICU identified themes that correspond with our findings; for example, the importance of availability, attentiveness, honesty, comprehensiveness of information, and affect; attending to the complexity of the vocabulary used, pacing of information, and body language; while preventing contradictory information and false hope (Meert et al., 2008). Additional PICU research led by the first author (Franco A. Carnevale) 7 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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in Italy, involving HCPs and parents, identified features of ‘good’ communication that further corroborate our findings; for example, providing clear and complete information on a regular basis, presented in a humane manner, with attention to the parent’s emotional state (Carnevale et al., 2011). Our investigation builds on this prior research by advancing a comprehensive and integrated analysis of PICU communication between HCPs and parents. The proposed framework can guide future practice, education, and research relating to PICU communication. We recommend that PICU settings review their practices to promote explicit attention to the 3 dimensions of communication highlighted in this investigation. Education programs can be effective means for ensuring this form of practice development. For example, Meyer and associates have documented and evaluated a 1-day workshop model, using simulation exercises, for promoting relational communication among HCPs (Meyer et al., 2009). Other educational programs can also provide useful methods for developing skills to address the features of communication that we have described (Lorin et al., 2006; Silverman et al., 2005). Future initiatives can adapt educational models such as these, as well as published communication standards (Davidson et al., 2007; Levetown, 2008), to promote the framework that we have developed. Previous work examining specific communication challenges can be adapted for this framework as well, for example disclosing medical error (Garbutt et al., 2007; Hobgood et al., 2005) or breaking bad news (Hsiao et al., 2007; Levetown, 2008; Meert et al., 2008).
Limitations The principal limitation of this research was that communication was not the primary focus of the initial studies in which data were collected. Communication was examined through a secondary analysis. Moreover, this research is based on research in four PICUs in France and Quebec, Canada. Therefore, the generalizability of our findings will need to be established in subsequent research, using representative sampling.
Future research development We identified knowledge gaps in the existing literature to highlight priorities for future research. Future PICU communication research should examine informational communication practices (e.g. what information should be provided; in what manner; by whom?), documentation of communication, communication continuity, how children themselves should participate in communication (Canouı¨, 2004; Carnevale, 2012), how family conferences affect the 3 dimensions of communication (Curtis and White, 2008; Drago et al., 2013; October et al., 2013), dealing with disagreements or conflicts, if or when it is permissible to withhold some information, the significance of other informational sources for parents (e.g. Internet; community groups), how shared decision making affects communication and professional responsibility (Kon, 2010; Feudtner, 2007), outcomes associated with better communication (e.g. more accurate diagnosis; improved adherence to treatment plan), and how communication among HCPs or among family members affects HCP–parent communication.
Conclusion The research reported in this article will help advance evidence-informed practices and education regarding communication with parents in the PICU. Despite these important contributions, there is 8 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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a need for further research and evaluation of strategies for promoting the development of PICU communication. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Supplemental material The online data supplements are available at http://chc.sagepub.com/content/by/supplemental-data. References Canouı¨ P (2004) L’information de l’enfant et de sa famille: ve´cu des enfants et des parents. Archives de Pe´diatrie 11(supl 1): 32–41. Carnevale FA (2005) Ethical care of the critically ill child: a conception of a ‘‘thick’’ bioethics. Nursing Ethics 12: 239–252. Carnevale FA (2012) Listening authentically to youthful voices: a conception of the moral agency of children. In: Storch JL, Rodney P and Starzomski R (eds) Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed). Toronto: Pearson Education, pp. 315–332. Carnevale FA, Benedetti M, Bonaldi A, et al. (2011) Understanding the private worlds of physicians, nurses, and parents: a study of life-sustaining treatment decisions in Italian pediatric critical care. Journal of Child Health Care 15(4): 334–349. Carnevale FA, Canoui P, Cremer R, et al. (2007) Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec. Pediatric Critical Care Medicine 8(4): 337–342. Carnevale FA, Canouı¨ P, Hubert P, et al. (2006) The moral experience of parents regarding life-support decisions for their critically ill children: a preliminary study in France. Journal of Child Health Care 10(1): 69–82. Carnevale FA, Farrell C, Cremer R, et al. (2012) Struggling to do what is right for the child: pediatric lifesupport decisions among physicians and nurses in France and Quebec. Journal of Child Health Care 16(2): 109–123. Curtis JR and White DB (2008) Practical guidance for evidence-based ICU family conferences. Chest 134: 835–843. Davidson JE, Powers K, Hedayat KM, et al. (2007) Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American college of critical care medicine task force 2004–2005. Critical Care Medicine 35(2): 605–622. de Saint Blanquat L, Cremer R, Elie C, et al. (2014) Opinions des soignants des re´animations pe´diatriques franc¸aises sur l’application de la loi du 22 avril 2005 dite «Loi Le´onetti» [French law related to patient’s rights and end of life: Paediatric Intensive Care Unit’s health professionals ‘s opinions]. Archives de Pe´diatrie 21(1): 34–43. Drago MJ, Aronson PL, Madrigal V, et al. (2013) Are family characteristics associated with attendance at family centered rounds in the PICU? Pediatric Critical Care Medicine 14(2): e93–e97. Feudtner C (2007) Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatric Clinics of North America 54: 583–607. Garbutt J, Brownstein DR, Klein EJ, et al. (2007) Reporting and disclosing medical errors: pediatricians’ attitudes and behaviors. Archives of Pediatrics and Adolescent Medicine 161(2): 179–185. 9 Downloaded from chc.sagepub.com at SIMON FRASER LIBRARY on June 10, 2015
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