Paying attention to relatives of cancer patients: What can we learn from their online writings?

OBJECTIVE: Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online. METHODS: We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives. RESULTS: Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%). CONCLUSIONS: This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics. PRACTICE IMPLICATIONS: It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden.

The Effect of Screen-to-Screen Versus Face-to-Face Consultation on Doctor-Patient Communication: An Experimental Study with Simulated Patients.

BACKGROUND: Despite the emergence of Web-based patient-provider contact, it is still unclear how the quality of Web-based doctor-patient interactions differs from face-to-face interactions. OBJECTIVE: This study aimed to examine (1) the impact of a consultation medium on doctors' and patients' communicative behavior in terms of information exchange, interpersonal relationship building, and shared decision making and (2) the mediating role of doctors' and patients' communicative behavior on satisfaction with both types of consultation medium. METHODS: Doctor-patient consultations on pelvic organ prolapse were simulated, both in a face-to-face and in a screen-to-screen (video) setting. Twelve medical interns and 6 simulated patients prepared 4 different written scenarios and were randomized to perform a total of 48 consultations. Effects of the consultations were measured by questionnaires that participants filled out directly after the consultation. RESULTS: With respect to patient-related outcomes, satisfaction, perceived information exchange, interpersonal relationship building, and perceived shared decision making showed no significant differences between face-to-face and screen-to-screen consultations. Patients' attitude toward Web-based communication (b=-.249, P=.02 and patients' perceived time and attention (b=.271, P=.03) significantly predicted patients' perceived interpersonal relationship building. Patients' perceived shared decision making was positively related to their satisfaction with the consultation (b=.254, P=.005). Overall, patients experienced significantly greater shared decision making with a female doctor (mean 4.21, SD 0.49) than with a male doctor (mean 3.66 [SD 0.73]; b=.401, P=.009). Doctor-related outcomes showed no significant differences in satisfaction, perceived information exchange, interpersonal relationship building, and perceived shared decision making between the conditions. There was a positive relationship between perceived information exchange and doctors' satisfaction with the consultation (b=.533, P<.001). Furthermore, doctors' perceived interpersonal relationship building was positively related to doctors' satisfaction with the consultation (b=.331, P=.003). CONCLUSIONS: In this study, the quality of doctor-patient communication, as indicated by information exchange, interpersonal relationship building, and shared decision making, did not differ significantly between Web-based and face-to-face consultations. Doctors and simulated patients were equally satisfied with both types of consultation medium, and no differences were found in the manner in which participants perceived communicative behavior during these consultations. The findings suggest that worries about a negative impact of Web-based video consultation on the quality of patient-provider consultations seem unwarranted as they offer the same interaction quality and satisfaction level as regular face-to-face consultations.

Sharing decisions during diagnostic consultations; an observational study in pediatric oncology.

OBJECTIVE: Children and parents need to make important decisions in the period of being informed about the diagnosis of childhood cancer. Although parents' and children's involvement is legally required, it is unclear whether oncologists involve them. This study explored which decisions families face, how oncologists involve them in shared decision-making (SDM) and which factors are associated with this process. METHODS: Forty-three families with children, starting treatment for childhood cancer, were recruited from three Dutch academic pediatric oncology clinics. Diagnostic consultations were audio-taped and coded with the OPTION. RESULTS: On average, 3.5 decisions were discussed per consultation. Most frequently discussed decisions concerned registration in a patient database (42%) and how to deal with hair loss (33%). Oncologists' assistance in SDM focused on giving information and ensuring the parents' and the child's understanding. The hospital in which children were treated (F(2,2)=5.39, p=.01) and discussing trial participation (F(1,1)=8.11, p=.01) were associated with oncologists' assistance. CONCLUSION: Decision-making during diagnostic consultations appears to focus on non-treatment related decisions. Oncologists' assistance mostly concerned sharing information, instead of SDM. PRACTICE IMPLICATIONS: Additional research is needed to provide insight in how to increase oncologists' assistance, while taking into account children's and parents' preferences concerning SDM.

The link between perception of clinical empathy and nonverbal behavior: The effect of a doctor's gaze and body orientation.

OBJECTIVES: Clinical empathy is considered to be one of the most important skills for medical professionals. It is primarily conveyed by nonverbal behavior; however, little is known about the importance of different types of cues and their relation to engagement and sincerity as possible correlates of perceived clinical empathy (PCE). In this study, we explored the effect of doctor's gaze and body orientation on PCE with the help of 32 video vignettes. METHODS: Actors impersonating medical interns displayed different combinations of gaze and body orientation while uttering an empathetic verbal statement. The video vignettes were evaluated in terms of the perceived clinical and general empathy, engagement and sincerity. RESULTS: A principal component analysis revealed a possible single-factor solution for the scales measuring the two types of empathy, engagement and sincerity; therefore, they were subsumed under general perceived empathy (GPE). An analysis of variance showed a main effect of gaze and body orientation, with a stronger effect of gaze, on GPE. We subsequently performed a linear random effects analysis, which indicated possible gender-related differences in the perception of gaze. CONCLUSIONS: The outcomes of our experiment confirm that both gaze and body orientation have an influence on the GPE. The effect of gaze, however, appears to be gender-dependent: in the experiment, males were perceived as slightly more empathetic with patient-centered gaze, while for females averted gaze resulted in higher GPE scores. PRACTICE IMPLICATIONS: The findings are directly relevant in the context of medical communication training. Perception of clinical empathy supports medical information transfer, diagnosis quality and other patient outcomes.

Automatic detection of confusion in elderly users of a web-based health instruction video.

BACKGROUND: Because of cognitive limitations and lower health literacy, many elderly patients have difficulty understanding verbal medical instructions. Automatic detection of facial movements provides a nonintrusive basis for building technological tools supporting confusion detection in healthcare delivery applications on the Internet. MATERIALS AND METHODS: Twenty-four elderly participants (70-90 years old) were recorded while watching Web-based health instruction videos involving easy and complex medical terminology. Relevant fragments of the participants' facial expressions were rated by 40 medical students for perceived level of confusion and analyzed with automatic software for facial movement recognition. RESULTS: A computer classification of the automatically detected facial features performed more accurately and with a higher sensitivity than the human observers (automatic detection and classification, 64% accuracy, 0.64 sensitivity; human observers, 41% accuracy, 0.43 sensitivity). A drill-down analysis of cues to confusion indicated the importance of the eye and eyebrow region. CONCLUSIONS: Confusion caused by misunderstanding of medical terminology is signaled by facial cues that can be automatically detected with currently available facial expression detection technology. The findings are relevant for the development of Web-based services for healthcare consumers.

Talking with parents about end-of-life decisions for their children.

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.

Patients' and health professionals' use of social media in health care: motives, barriers and expectations.

OBJECTIVE: To investigate patients' and health professionals' (a) motives and use of social media for health-related reasons, and (b) barriers and expectations for health-related social media use. METHODS: We conducted a descriptive online survey among 139 patients and 153 health care professionals in obstetrics and gynecology. In this survey, we asked the respondents about their motives and use of social network sites (SNS: Facebook and Hyves), Twitter, LinkedIn, and YouTube. RESULTS: Results showed that patients primarily used Twitter (59.9%), especially for increasing knowledge and exchanging advice and Facebook (52.3%), particularly for social support and exchanging advice. Professionals primarily used LinkedIn (70.7%) and Twitter (51.2%), for communication with their colleagues and marketing reasons. Patients' main barriers for social media use were privacy concerns and unreliability of the information. Professionals' main barriers were inefficiency and lack of skills. Both patients and professionals expected future social media use, provided that they can choose their time of social media usage. CONCLUSION: The results indicate disconcordance in patients' and professionals' motives and use of social media in health care. PRACTICE IMPLICATIONS: Future studies on social media use in health care should not disregard participants' underlying motives, barriers and expectations regarding the (non)use of social media.

Activity and participation of children and adolescents with unilateral congenital below elbow deficiency: an online focus group study.

OBJECTIVE: To assess whether children/adolescents with unilateral congenital below elbow deficiency experience activity or participation limitations and how they deal with those limitations. METHODS: A qualitative study using online focus group interviews was held with 42 children/adolescents (in 3 age groups: 8-12, 13-16, and 17-20 years), 17 parents and 19 health professionals. Questions were posted concerning activities, participation, prosthetic use, psychosocial functioning, and rehabilitation care. This study concerns the first two topics; activities and participation. RESULTS: Children/adolescents experienced only a few limitations, and there were no activities or participation situations that were impossible. The limitations experienced could be attributed mainly to environmental factors, e.g. people who lack knowledge of the child's capacities. Those factors were particularly decisive in transition phases. Children/adolescents and parents described numerous strategies applied to deal with the deficiency. Professionals described fewer strategies and emphasized the use of adaptive devices and prostheses more than other participants did. CONCLUSION: Having unilateral congenital below elbow deficiency did not interfere with any activity, but not all children/adolescents had the ability to perform all activities. The strategies described by children/adolescents in managing their deficiency should be integrated into healthcare by providing realistic education about the various creative solutions and possibilities of adaptive devices and prostheses, and should be combined with specific training.

Multitasking during patient handover in the recovery room.

BACKGROUND: Loss of information occurs frequently during handover and affects the continuity of care. Improving handovers is therefore a key patient safety goal. After surgery, the patient is transferred to the postanesthesia care unit (PACU), and handover to the nurse includes both handover of monitoring equipment (connecting electrocardiogram, calibrating arterial lines, infusion pumps, etc.) and patient/procedure-specific information. Multitasking is likely to increase the risk of information loss during handover. It is unknown to what extent the transfer of equipment and information occurs simultaneously or sequentially in daily practice. METHODS: A nationwide questionnaire on the subject of patient handover was returned by 494 health care practitioners concerned with handovers from operating room (OR) to PACU. In addition, 101 handovers from the OR to the PACU were videotaped in 2 academic hospitals (n = 20), 3 teaching hospitals (n = 43) and 1 community hospital (n = 38). The occurrence of simultaneous or sequential transfer of equipment and information was recorded by two independent observers. RESULTS: Simultaneous handover of equipment and information was the preference for a minority of respondents to the national survey (11%, 95% confidence interval, 8% to 14%). Self-reported simultaneous handover was 43% (39% to 47%). In the videotaped handovers, simultaneous handover was used for 65% (56% to 74%), which was even higher in the academic centers. The simultaneous handovers were no more than 0.2 minute faster than sequential handovers (P = 0.38). CONCLUSIONS: In most videotaped handovers from OR to the PACU, there was simultaneous transfer of equipment and information. Although most health care providers are unaware of it, this form of multitasking during patient handover in the PACU is common. Future studies should evaluate whether this multitasking also leads to loss of critical patient information and reduced patient safety.

Tailored information for cancer patients on the Internet: effects of visual cues and language complexity on information recall and satisfaction.

OBJECTIVE: This study was designed to investigate the effects of visual cues and language complexity on satisfaction and information recall using a personalised website for lung cancer patients. In addition, age effects were investigated. METHODS: An experiment using a 2 (complex vs. non-complex language)×3 (text only vs. photograph vs. drawing) factorial design was conducted. In total, 200 respondents without cancer were exposed to one of the six conditions. RESULTS: Respondents were more satisfied with the comprehensibility of both websites when they were presented with a visual cue. A significant interaction effect was found between language complexity and photograph use such that satisfaction with comprehensibility improved when a photograph was added to the complex language condition. Next, an interaction effect was found between age and satisfaction, which indicates that adding a visual cue is more important for older adults than younger adults. Finally, respondents who were exposed to a website with less complex language showed higher recall scores. CONCLUSION: The use of visual cues enhances satisfaction with the information presented on the website, and the use of non-complex language improves recall. PRACTICE IMPLICATIONS: The results of the current study can be used to improve computer-based information systems for patients.

Communicating with child patients in pediatric oncology consultations: a vignette study on child patients', parents', and survivors' communication preferences.

OBJECTIVE: To investigate the preferences of children with cancer, their parents, and survivors of childhood cancer regarding medical communication with child patients and variables associated with these preferences. METHODS: Preferences regarding health-care provider empathy in consultations, and children's involvement in information exchange and medical decision making were investigated by means of vignettes. Vignettes are brief descriptions of hypothetical situations, in which important factors are systematically varied following an experimental design. In total, 1440 vignettes were evaluated by 34 children with cancer (aged 8-16), 59 parents, and 51 survivors (aged 8-16 at diagnosis, currently aged 10-30). Recruitment of participants took place in three Dutch university-based pediatric oncology centers. Data were analyzed by multilevel analyses. RESULTS: Patients, parents, and survivors indicated the importance of health-care providers' empathy in 81% of the described situations. In most situations (70%), the three respondent groups preferred information about illness and treatment to be given to patients and parents simultaneously. Preferences regarding the amount of information provided to patients varied. The preference whether or not to shield patients from information was mainly associated with patients' age and emotionality. In most situations (71%), the three respondent groups preferred children to participate in medical decision making. This preference was mainly associated with patients' age. CONCLUSIONS: To be able to adapt communication to parents' and patients' preferences, health-care providers should repeatedly assess the preferences of both groups. Future studies should investigate how health-care providers balance their communication between the sometimes conflicting preferences of patients and parents.

Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology.

BACKGROUND: The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology. METHODS: Qualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8-17), 11 parents, and 18 survivors of childhood cancer (aged 8-17 at diagnosis). RESULTS: All three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups. CONCLUSION: The findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.

Young patients', parents', and survivors' communication preferences in paediatric oncology: results of online focus groups.

BACKGROUND: Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. METHODS: Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. RESULTS: Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. CONCLUSION: Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents.

Models and theories in studies on educating and counseling children about physical health: a systematic review.

The aim of this review is to gain a comprehensive view on the theories and models referred to in studies on educating and counseling children about physical health. A computer search was conducted using PubMed Medline, and Silverplatter Webspirs Psycinfo. Original studies, reviews, and theoretical papers published between 1992-2003 were included. The review presents the results of the 35 studies in which the majority of the subjects were between 0 and 12 years of age. A classification system is proposed that helped grouping the models, and the interrelationship between this classification and the characteristics of the reviewed studies is explored. The classification could function as an introductory guide and help to select appropriate theories and models when defining future research agenda's. The results of this review may attribute to the refinement of the theoretical underpinning of child education and counseling in physical health.

Communication in context: new directions in communication research.

By focusing attention almost exclusively on a single encounter, researchers have adopted a rather restricted view on studying communication in health care. After all, communication does not take place in a vacuum but is influenced by the context in which it takes place. We would therefore strongly recommend to broaden the perspective of communication research. In this respect, four lines of investigation are proposed, each guided by different theories. In the first, context is determined by the goals or targets aimed at by both parties in the medical encounter. The second concerns the context of time, referring to the influence of previous and future medical encounters. The third is set up around the organizational context in which an interaction takes place and the last defines context by looking at a medical encounter as a meeting between two multifaceted parties. Studying a medical encounter in its broader context is expected to provide answers to intriguing questions such as why health care professionals do not always act in conformity with the general approved standards of high quality communication and how the factor time span can be used more effectively in the medical encounter. Eventually, a broader context view will bridge the existing gap between theory and practice.

Doctor-parent-child relationships: a 'pas de trois'.

Adult participants play a pivotal role in doctor-parent-child interactions at the general practitioner's (GP's) surgery. The child's opportunities to participate are rather limited and parental speaking for the child is, in a way, institutionally co-constructed. This study aimed at further characterizing the relationships within this triad by developing a typology of doctor-parent-child interactions, which classified adult behavior in terms of supporting versus non-supporting child participation. The child's participation was described in terms of display of involvement and turning for support. Analyses of 105 videos show that in most consultations, both GP and parent displayed non-supportive behavior. Despite the GPs' initial efforts to involve the child in the interaction, 90% of the consultations ended up in a non-participatory way. During this last segment of diagnosis and treatment information, the child's voice was hardly heard, as reflected in the minimal involvement displayed and the absence of turning to the parent for support. It is concluded that the bi-directional perspective chosen in this analysis allowed for a better understanding of the underlying mechanisms leading to the stereotypical picture in both literature and actual practice of triadic medical interactions being dominated by both adult participants. The low degree of child participation should not solely be seen as a consequence of adult behavior, but rather as a co-construction of all three participants. The results are discussed from a pedagogical perspective, and implications for medical practice are formulated.