Agenda Setting During Follow-Up Encounters in a University Primary Care Outpatient Clinic

At the beginning of the medical encounter, clinicians should elicit patients’ agendas several times using open-ended questions. Little is known, however, about how many times physicians really solicit a patient’s agenda during follow-up encounters. The objective was to analyze the number of agenda solicitations by physicians, of agendas initiated by physicians, and of patients’ spontaneous agendas during the beginning and the entire encounter. We analyzed 68 videotaped follow-up encounters at a university primary care outpatient clinic. The number of different types of agenda setting was searched for and analyzed using negative binomial regression or logistic regression models. Physicians solicited agendas a mean ± SD of 0.8 ± 0.7 times/patient during the first 5 minutes and 1.7 ± 1.2 times/patient during the entire encounter. Physicians in 32.4% of encounters did not solicit the patient agenda, and there were never more than two physician’s solicitations during the first 5 minutes. The mean number of physician’s solicitations of the patients’ agenda was 42% lower among female physicians during the first 5 minutes and 34% lower during the entire encounter. The number of agendas initiated by physicians was 1.2 ± 1.2/patient during the beginning and 3.2 ± 2.3/patient during the entire encounter. In 58.8% of the encounters, patients communicated their agendas spontaneously. There were twice as many patient spontaneous agendas (IRR = 2.12, p = .002) with female physicians than with males. This study showed that agenda solicitation with open-ended questions in follow-up encounters does not occur as often as recommended. There is thus a risk of missing new agendas or agendas that are important to the patient.     

A Study of Politeness Strategies Adopted in Pediatric Clinics in Taiwan

This article examines treatment recommendations in orthopedic surgery consultations and shows how surgery is treated as “omni-relevant” within this activity, providing a context within which the broad range of treatment recommendations proposed by surgeons is offered. Using conversation analysis to analyse audiotaped encounters between orthopedic surgeons and patients, we highlight how surgeons treat surgery as having a special, privileged status relative to other treatment options by (1) invoking surgery (whether or not it is actually being recommended) and (2) presenting surgery as the “last best resort” (in relation to which other treatment options are calibrated, described and considered). This privileged status surfaces in the design and delivery of recommendations as a clear asymmetry: Recommendations for surgery are proposed early, in relatively simple and unmitigated form. In contrast, recommendations not for surgery tend to be delayed and involve significantly more interactional work in their delivery. Possible implications of these findings, including how surgeons' structuring of recommendations may shape patient expectations (whether for surgery or some alternative), and potentially influence the distribution of orthopedic surgery procedures arising from these consultations, are considered.     

Pilot study comparing patients’ valuation of health‐care services with Medicare’s relative value units

Background and aims Physician reimbursement for services and thus income are largely determined by the Medicare Resource‐Based Relative Value Scale. Patients’ assessment of the value of physician services has never been considered in the calculation. This study sought to compare patients’ valuation of health‐care services to Medicare’s relative value unit (RVU) assessments and to discover patients’ perceptions about the relative differences in incomes across physician specialties. Design Cross‐sectional survey. Participants and setting Individuals in select outpatient waiting areas at Johns Hopkins Bayview Medical Center. Methods Data collection included the use of a visual analog ‘value scale’ wherein participants assigned value to 10 specific physician‐dependent health‐care services. Informants were also asked to estimate the annualized incomes of physicians in specialties related to the abovementioned services. Comparisons of (i) the ‘patient valuation RVUs’ with actual Medicare RVUs, and (ii) patients’ estimations of physician income with actual income were explored using t‐tests. Outcomes Of the 206 eligible individuals, 186 (90%) agreed to participate. Participants assigned a significantly higher mean value to 7 of the 10 services compared with Medicare RVUs (P < 0.001) and the range in values assigned by participants was much smaller than Medicare’s (a factor of 2 vs. 22). With the exception of primary care, respondents estimated that physicians earn significantly less than their actual income (all P < 0.001) and the differential across specialties was thought to be much smaller (estimate: $88 225, actual: $146 769). Conclusion In this pilot study, patients’ estimations of the value health‐care services were markedly different from the Medicare RVU system. Mechanisms for incorporating patients’ valuation of services rendered by physicians may be warranted.     

‘Constrained collaboration’: Patient empowerment discourse as resource for countervailing power

Countervailing powers constrain the authority and autonomy of the medical profession. One countervailing power is patient consumerism, a movement with roots in health social movements. Patient empowerment discourses that emerge from health social movements suggest that active patienthood is a normative good, and that patients should inform themselves, claim their expertise, and participate in their care. Yet, little is known about how patient empowerment is understood by physicians. Drawing on ethnographic fieldwork in an American medical school, this article examines how physicians teach medical students to carry out patient encounters while adhering to American cultural expectations of a collaborative physician–patient relationship. Overt medical paternalism is characterised by professors as ‘here's the orders’ paternalism, and shown to be counterproductive to ‘closing the deal’ – achieving patient agreement to a course of treatment. To explain how physicians accomplish their therapeutic goals without violating cultural mandates of patient empowerment I develop the concept of ‘constrained collaboration’. This analysis of constrained collaboration contrasts with structural‐level narratives of diminishing professional authority and contributes to a theory of the micro‐level reproduction of medical authority as a set of interactional practices.     

Do physicians’ recommendations pull patients away from their preferred treatment options?

Context and objective Shared decision making is especially advocated for preference‐sensitive decisions. We investigated whether physicians’ recommendations pull patients away from their preferred treatment option when making a preference‐sensitive decision. Design, participants and methods Inpatients (N = 102 with schizophrenia, N = 101 with multiple sclerosis) were presented with a hypothetical scenario (the choice between two drugs). They were first asked about their preferences concerning the two drugs and then they received a (fictitious) clinician’s recommendation that was contrary to their preferences. Subsequently they made a final choice between the two drugs. Main outcome measures The main outcome measure was whether the patient followed the physician’s advice in the hypothetical scenario. Thereby patient’s (pre‐recommendation) preferences served as a baseline. Results In the decision scenario, about 48% of the patients with schizophrenia and 26% of the patients with multiple sclerosis followed the advice of their physician and thus chose the treatment option that went against their initial preferences. Patients who followed their physician’s advice were less satisfied with their decision than patients not following their physician’s advice (schizophrenia: t = 2.61, P = 0.01; multiple sclerosis: t = 2.67, P = 0.009). Discussion and conclusions When sharing decisions with patients, physicians should be aware that their advice might influence patients’ decisions away from their preferred treatment option. They should encourage their patients to identify their own preferences and help to find the treatment option most consistent with them.     

Physician‐related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients

Objective To identify patients’ and physicians’ perceptions of physician‐related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM) occurring during clinical encounters for women with early stage breast cancer (ESBC). Methods Eligible women were offered treatment options including surgery and adjuvant therapy. Eligible physicians provided care for women with ESBC in either a teaching hospital or an academic cancer centre. In Phase 1, women were interviewed 1–2 weeks after their initial consultation. In Phase 2, women and their physicians were interviewed separately while watching their own consultation on a digital video disk. All interviews were audiotaped, transcribed and analysed. Results Forty women with ESBC and six physicians participated. Patients and physicians identified thirteen categories of physician facilitators of women’s involvement. Of these, seven categories were frequently identified by women: conveyed a rationale for patient involvement in TDM; explained the risk of cancer recurrence; explained treatment options; enhanced patient understanding of information; gave time for TDM; offered a treatment recommendation; and made women feel comfortable. Physicians described similar information‐giving facilitators but less often mentioned other facilitators. Few physician barriers to women’s involvement in TDM were identified. Conclusions Women with ESBC and cancer physicians shared some views of how physicians involve patients in TDM, although there were important differences. Physicians may underestimate the importance that women’s place on understanding the rationale for their involvement in TDM and on feeling comfortable during the consultation.     

The supervisory encounter and the senior GP trainee: managing for,through and with

Objective

Help‐seeking supervisory encounters provide important learning experiences for trainees preparing for independent practice. Although there is a body of expert opinion and theories on how supervisor encounters should happen, supporting empirical data are limited. This is particularly true for the senior general practice (GP ) trainee. Without knowing what happens during these encounters, we cannot know how to maximise their educational potential. This study aimed to understand what happens when senior GP trainees call on their supervisor when caring for patients and how learning can be enhanced when this occurs.

Methods

This is an analysis of data from a multi‐case study of five GP supervisory pairs, each with a GP registrar and their supervisor. The data are recordings of 45 supervisory encounters, 78 post‐encounter reflections and six interviews. We used Wenger's communities of practice theory and rhetorical genre theory as analytical lenses.

Results

The supervisory encounters followed a consistent format, which fitted the form of a genre. Within this genre, three dominant interactional patterns were identified, which we labelled ‘managing for’, ‘managing through’ and ‘managing with’. Each pattern presented different opportunities and drew on different skills. The primary agenda was always developing a plan for the patient. Education agendas included acquiring knowledge, developing skills and achieving independence. Other agendas were issues of control, credibility and relationship building. Both supervisor and trainee could be purposeful in their supervisory engagement.

Conclusions

For supervisors and trainees to achieve the educational potential of their supervisory encounters they require flexibility. This depends on understanding the genre of the supervisory encounter, the agendas at play, the options they have in engaging and having the skills to utilise these options. Educators can facilitate supervisors and trainees in acquiring this understanding and these skills. We recommend further research into the genre of the supervisory encounter.

     

Patients’ and clinicians’ research priorities

Background If research addresses the questions of relevance to patients and clinicians, decision‐makers will be better equipped to design and deliver health services which meet their needs. To this end, a number of initiatives have engaged patients and clinicians in setting research agendas. This paper aimed to scope the research literature addressing such efforts. Methods A systematic search strategy combined electronic searches of bibliographic databases with handsearching and contacting key authors. Two researchers, initially working independently, described the relevant reports. Findings Over 250 studies addressed patients’ or clinicians’ priorities for research and outcomes for assessment. This literature described different routes for patients and clinicians to contribute to research agendas. Two‐thirds of the studies addressing patients’ or clinicians’ research questions were applicable across health care, with the remainder focussed on specific health conditions. The 27 formal studies of patient involvement revealed a literature that has grown in the last decade. Although only nine studies engaged patients and clinicians in identifying research questions together, they show that methods have advanced over time, with all of them engaging participants directly and repeatedly in facilitated debate and most employing formal decision‐making procedures. Conclusion A sizeable literature is available to inform priorities for research and the methods for setting research agendas with patients and clinicians. We recommend that research funders and researchers draw on this literature to provide relevant research for health service decision‐makers.     

Waking up the next morning: surgeons’ emotional reactions to adverse events

Medical Education 2012: 46 : 1179–1188 Context The adverse patient event is an inherent component of surgical practice, but many surgeons are unprepared for the profound emotional responses these events can evoke. This study explored surgeons’ reactions to adverse events and their impact on subsequent judgement and decision making. Methods Using a constructivist grounded theory approach, we conducted 20 semi‐structured, 60‐minute interviews with surgeons across subspecialties, experience levels, and sexes to explore surgeons’ recollections of reactions to adverse events. Further interviews were conducted with six general surgeons to explore more immediate reactions after 28 adverse events. Data coding was both inductive, developing a new framework based on emergent themes, and deductive, using an existing framework for care providers’ reactions to adverse events. Results Surgeons expressed feeling unique and alone in the depths of their reactions to adverse events and consistently described four phases of response, each containing cognitive and emotive components, following such events. The initial phase (the kick) involved feelings of failure (‘Am I good enough?’) experienced with a significant physiological response. This was shortly followed by a second phase (the fall), during which the surgeon experienced a sense of chaos and assessed the extent of his or her contribution to the event (‘Was it my fault?’). During the third phase (the recovery), the surgeon reflected on the adverse event (‘What can I learn?’) and experienced a sense of ‘moving on’. In the fourth phase (the long‐term impact), the surgeon experienced the prolonged and cumulative effects of these reactions on his or her own personal and professional identities. Surgeons also described an effect on their clinical judgement, both for the case in question (minimisation) and future cases (overcompensation). Conclusions Surgeons progress through a series of four phases following adverse events that are potentially caused by or directly linked to surgeon error. The framework provided by this study has implications for teaching, surgeon wellness and surgeon error.     

Help,I’m losing patient‐centredness! Experiences of medical students and their teachers

Medical Education 2010: 44 : 662–673 Objectives Despite all educational efforts, the literature shows an ongoing decline in patient‐centredness during medical education. This study explores the experiences of medical students and their teachers and supervisors in relation to patient‐centredness in order to gain a better understanding of the factors that determine its development. Methods We conducted 11 focus groups on the subject of learning and teaching about patient‐centredness. We then carried out a constant comparative analysis of prior theory and the qualitative data collected in the focus groups using the ‘sensitising concepts’ provided by the Attitude–Social Influence–Self‐Efficacy (ASE) model. Results Although students express positive attitudes towards patient‐centredness and acquire patient‐centred skills during medical education, this study indicates that these are not sufficient to attain the level of competent behaviour needed in today’s challenging hospital environment. Clinical clerkships do provide students with ample opportunity to encounter patients and practise patient‐centred skills. However, when students lack self‐efficacy, when they face barriers (time pressure, tiredness) or when they are surrounded by non‐patient‐centred role models and are overwhelmed by powerful experiences, they lose their patient‐centred focus. The study suggests that communication skills training protects students from negative social influences. Moreover, personal development, including developing the ability to deal with emotions and personal suffering, self‐awareness and self‐care are important qualities of the central phenomenon of the ‘doctor‐as‐person’, which is identified as a missing concept in the ASE model. The student–supervisor relationship is found to be key to learning patient‐centredness and has several functions: it facilitates the direct transmission of patient‐centred skills, knowledge and attitudes; it provides social support of students’ patient‐centred behaviour; it provides support of the ‘student‐as‐person’; it mirrors patient‐centredness by being student‐centred, and, lastly, it addresses supervisor vulnerability. Finally, participants recommend that student‐centred education and guidance be offered, self‐awareness be fostered and more opportunities to encounter patients be created, including more time in general practice. Conclusions Supportive student–doctor relationships, student‐centred education and guidance that addresses the needs of the doctor‐as‐person are central to the development of patient‐centredness. Medical education requires patient‐centred, self‐caring and self‐aware role models.     

Occupational therapists’ perceptions of gender – A focus group study

Background/aim: Women and men are shaped over the courses of their lives by culture, society and human interaction according to the gender system. Cultural influences on individuals’ social roles and environment are described in occupational therapy literature, but not specifically from a gender perspective. The purpose of this qualitative study was to explore how a sample of occupational therapists perceives the ‘gender’ concept. Method: Four focus group interviews with 17 occupational therapists were conducted. The opening question was: ‘How do you reflect on the encounter with a client depending on whether it is a man or a woman?’ The transcribed interviews were analysed and two main themes emerged: ‘the concept of gender is tacit in occupational therapy’ and ‘client encounters’. Results: The occupational therapists expressed limited theoretical knowledge of ‘gender’. Furthermore, the occupational therapists seemed to be ‘doing gender’ in their encounters with the clients. For example, in their assessment of the client, they focussed their questions on different spheres: with female clients, on the household and family; with male clients, on their paid work. Conclusions: This study demonstrated that occupational therapists were unaware of the possibility that they were ‘doing gender’ in their encounters with clients. There is a need to increase occupational therapists’ awareness of their own behaviour of ‘doing gender’. Furthermore, there is a need to investigate whether gendered perceptions will shorten or lengthen a rehabilitation period and affect the chosen interventions, and in the end, the outcome for the clients.     

Fathers’ encounter of support from paediatric diabetes teams; the tension between general recommendations and personal experience

The purpose of this grounded theory study was to explore and discuss how fathers involved in caring for a child with type 1 diabetes experienced support from Swedish paediatric diabetes teams (PDTs) in everyday life with their child. Eleven fathers of children with type 1 diabetes, living in Sweden and scoring high on involvement on the Parental Responsibility Questionnaire, participated. Data were collected from January 2011 to August 2011, initially through online focus group discussions in which 6 of 19 invited fathers participated. Due to high attrition, the data collection continued in eight individual interviews. A semi‐structured interview guide was used, and the fathers were asked to share experiences of their PDT’s support in everyday life with their child. A simultaneous and constant comparison approach to data collection and analysis allowed the core category to emerge: the tension between general recommendations and personal experience. This core category illuminates how the fathers experienced tension between managing their unique everyday life with their child and balancing this to meet their PDT’s expectations with regard to blood glucose levels. The core category was supported by two categories: the tension between the fathers’and their PDT’s knowledge, whereby fathers reported discrepancies between their PDT’s medical knowledge and their own unique knowledge of their child; and the tension between the fathers’and their PDT’s goals, whereby the fathers identified differences between the familys’ and their PDT’s goals. As a dimension of the core category, fathers felt trust or distrust in their PDT. We conclude that to achieve high‐quality support for children with diabetes and to enhance their health and well‐being, involved fathers’ knowledge of their unique family situation needs to be integrated into the diabetes treatment.     

Chart stalking,list making,and physicians’ efforts to track patients’ outcomes after transitioning responsibility

Context

Transitions of patient care responsibility occur frequently between physicians. Resultant discontinuities make it difficult for physicians to observe clinical outcomes. Little is known about what physicians do to overcome the practical challenges to learning these discontinuities create. This study explored physicians’ activities in practice as they sought follow‐up information about patients.

Methods

Using a constructivist grounded theory approach, semi‐structured interviews with 18 internal medicine hospitalist and resident physicians at a single tertiary care academic medical center explored participants’ strategies when deliberately conducting follow‐up after they transitioned responsibility for patients to other physicians. Following open coding, the authors used activity theory (AT ) to explore interactions among the social, cultural and material influences related to follow‐up.

Results

The authors identified three themes related to follow‐up: (i) keeping lists to track patients, (ii) learning to create tracking systems and (iii) conducting follow‐up. Analysis of participants' follow‐up processes as an activity system highlighted key tensions in the system and participants’ work adaptations. Tension within functionality of electronic health records for keeping lists (tools) to find information about patients’ outcomes (object) resulted in using paper lists as workarounds. Tension between paper lists (tools) and protecting patients’ health information (rules) led to rule‐breaking or abandoning activities of locating information. Finding time to conduct desired follow‐up produced tension between this and other activity systems.

Conclusion

In clinical environments characterised by discontinuity, lists of patients served as tools for guiding patient care follow‐up. The authors offer four recommendations to address the tensions identified through AT : (i) optimise electronic health record tracking systems to eliminate the need for paper lists; (ii) support physicians’ skill development in developing and maintaining tracking systems for follow‐up; (iii) dedicate time in physicians’ work schedules for conducting follow‐up; and (iv) engage physicians and patients in determining guidelines for longitudinal tracking that optimise physicians’ learning and respect patients’ privacy.

     

‘You’re judged all the time!’ Students’ views on professionalism: a multicentre study

Medical Education 2010: 44 : 814–825 Objectives This study describes how medical students perceive professionalism and the context in which it is relevant to them. An understanding of how Phase 1 students perceive professionalism will help us to teach this subject more effectively. Phase 1 medical students are those in the first 2 years of a 5‐year medical degree. Methods Seventy‐two undergraduate students from two UK medical schools participated in 13 semi‐structured focus groups. Focus groups, carried out until thematic saturation occurred, were recorded and transcribed verbatim. Data were analysed and coded using NVivo 8, using a grounded theory approach with constant comparison. Results From the analysis, seven themes regarding professionalism emerged: the context of professionalism; role‐modelling; scrutiny of behaviour; professional identity; ‘switching on’ professionalism; leniency (for students with regard to professional standards), and sacrifice (of freedom as an individual). Students regarded professionalism as being relevant in three contexts: the clinical, the university and the virtual. Students called for leniency during their undergraduate course, opposing the guidance from Good Medical Practice. Unique findings were the impact of clothing and the online social networking site Facebook on professional behaviour and identity. Changing clothing was described as a mechanism by which students ‘switch on’ their professional identity. Students perceived society to be struggling with the distinction between doctors as individuals and professionals. This extended to the students’ online identities on Facebook. Institutions’ expectations of high standards of professionalism were associated with a feeling of sacrifice by students caused by the perception of constantly ‘being watched’; this perception was coupled with resentment of this intrusion. Students described the significant impact that role‐modelling had on their professional attitudes. Conclusions This research offers valuable insight into how Phase 1 medical students construct their personal and professional identities in both the offline and online environments. Acknowledging these learning mechanisms will enhance the development of a genuinely student‐focused professionalism curriculum.     

Pilot study of a ‘RIME’‐based tool for giving feedback in a multi‐specialty longitudinal clerkship

Context The Reporter–Interpreter–Manager–Educator (RIME) evaluation framework is intuitive and reliable. Our preceptors’ frustration with using summative tools for formative feedback and the hypothesis that the RIME vocabulary might improve students’ and preceptors’ experiences with feedback prompted us to develop and pilot a RIME‐based feedback tool. Methods The tool was based on the RIME vocabulary, which has previously been used for evaluation. As interpersonal skills and professionalism are difficult areas in which to give feedback, we added these as explicit categories. We piloted the tool in a longitudinal, 5‐month, multi‐specialty clerkship. Preceptors completed pre‐ and post‐introductory workshop surveys. Students completed post‐workshop and post‐clerkship surveys. Results Preceptors (n = 14) and students (n = 8) preferred RIME‐based feedback to ‘usual feedback’ (previously given using end‐of‐clerkship evaluation forms). After the initial workshop, preceptors expected that giving feedback, including critical feedback, would be easier. After the 5‐month clerkship, students reported receiving more feedback than in previous clerkships and rated feedback given using this tool more highly (P = 0.002; effect size 1.2). Students also felt it helped them understand specifically how to improve their performance (P = 0.003; effect size 1.2). Discussion In this pilot study, preceptors and students preferred feedback with a specific RIME‐based tool. Students felt such feedback was more useful and helped them identify specifically how to improve. Whether this method can improve student performance through improved feedback remains an area for further research.     

Stories of change in drug treatment: a narrative analysis of ‘whats’ and ‘hows’ in institutional storytelling

Addiction research has demonstrated how recovering individuals need narratives that make sense of past drug use and enable constructions of future, non‐addict identities. However, there has not been much investigation into how these recovery narratives actually develop moment‐to‐moment in drug treatment. Building on the sociology of storytelling and ethnographic fieldwork conducted at two drug treatment institutions for young people in Denmark, this article argues that studying stories in the context of their telling brings forth novel insights. Through a narrative analysis of both ‘the whats’ (story content) and ‘the hows’ (storying process) the article presents four findings: (1) stories of change function locally as an institutional requirement; (2) professional drug treatment providers edit young people's storytelling through different techniques; (3) the narrative environment of the drug treatment institution shapes how particular stories make sense of the past, present and future; and (4) storytelling in drug treatment is an interactive achievement. A fine‐grained analysis illuminates in particular how some stories on gender and drug use are silenced, while others are encouraged. The demonstration of how local narrative environments shape stories contributes to the general understanding of interactive storytelling in encounters between professionals and clients in treatment settings.     

The transition from medical student to junior doctor: today’s experiences of Tomorrow’s Doctors

Medical Education 2010: 44 : 449–458 Context Medical education in the UK has recently undergone radical reform. Tomorrow’s Doctors has prescribed undergraduate curriculum change and the Foundation Programme has overhauled postgraduate education. Objectives This study explored the experiences of junior doctors during their first year of clinical practice. In particular, the study sought to gain an understanding of how junior doctors experienced the transition from the role of student to that of practising doctor and how well their medical school education had prepared them for this. Methods The study used qualitative methods comprising of semi‐structured interviews and audio diary recordings with newly qualified doctors based at the Peninsula Foundation School in the UK. Purposive sampling was used and 31 of 186 newly qualified doctors self‐selected from five hospital sites. All 31 participants were interviewed once and 17 were interviewed twice during the year. Ten of the participants also kept audio diaries. Interview and audio diary data were transcribed verbatim and thematically analysed with the aid of a qualitative data analysis software package. Results The findings show that, despite recent curriculum reforms, most participants still found the transition stressful. Dealing with their newly gained responsibility, managing uncertainty, working in multi‐professional teams, experiencing the sudden death of patients and feeling unsupported were important themes. However, the stress of transition was reduced by the level of clinical experience gained in the undergraduate years. Conclusions Medical schools need to ensure that students are provided with early exposure to clinical environments which allow for continuing ‘meaningful’ contact with patients and increasing opportunities to ‘act up’ to the role of junior doctor, even as students. Patient safety guidelines present a major challenge to achieving this, although with adequate supervision the two aims are not mutually exclusive. Further support and supervision should be made available to junior doctors in situations where they are dealing with the death of a patient and on surgical placements.     

Paediatric pandemic planning: children’s perspectives and recommendations

Children, as major stakeholders in paediatric hospitals, have remained absent from discussions on important healthcare issues. One critical area where children’s voices have been minimised is in the planning for future pandemics. This paper presents a subset of data from a programme of research which examined various stakeholder experiences of the severe acute respiratory syndrome (SARS) outbreaks of 2003. These data also generated recommendations for future pandemic planning. Specifically, this paper will examine the perspectives and recommendations of children hospitalised during SARS in a large paediatric hospital in Canada. Twenty‐one (n = 21) child and adolescent participants were interviewed from a variety of medical areas including cardiac (n = 2), critical care (n = 2), organ transplant (n = 4), respiratory medicine (n = 8) and infectious diseases (patients diagnosed with suspected or probable SARS; n = 5). Data analyses exposed a range of children’s experiences associated with the outbreaks as well as recommendations for future pandemic planning. Key recommendations included specific policies and guidelines concerning psychosocial care, infection control, communication strategies and the management of various resources. This paper is guided by a conceptual framework comprised of theories from child development and literature on children’s rights. The authors call for greater youth participation in healthcare decision‐making and pandemic planning.