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

Contains fulltext : 81501.pdf (publisher's version ) (Open Access)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.9 p

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

Contains fulltext : 51596.pdf ( ) (Open Access)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

Giving an Account of One’s Pain in the Anthropological Interview

In this paper, I analyze the illness stories narrated by a mother and her 13-year-old son as part of an ethnographic study of child chronic pain sufferers and their families. In examining some of the moral, relational and communicative challenges of giving an account of one’s pain, I focus on what is left out of some accounts of illness and suffering and explore some possible reasons for these elisions. Drawing on recent work by Judith Butler (Giving an Account of Oneself, 2005), I investigate how the pragmatic context of interviews can introduce a form of symbolic violence to narrative accounts. Specifically, I use the term “genre of complaint” to highlight how anthropological research interviews in biomedical settings invoke certain typified forms of suffering that call for the rectification of perceived injustices. Interview narratives articulated in the genre of complaint privilege specific types of pain and suffering and cast others into the background. Giving an account of one’s pain is thus a strategic and selective process, creating interruptions and silences as much as moments of clarity. Therefore, I argue that medical anthropologists ought to attend more closely to the institutional structures and relations that shape the production of illness narratives in interview encounters

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

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. 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. 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. 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. 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 outcome

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

The effect of screen-to-screen versus face-to-face consultation on doctor-patient communication: An experimental study with simulated patients

Contains fulltext : 182396.pdf (publisher's version ) (Open Access)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

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. (aut. ref.