‘Visible‐ness’: the nature of communication for children admitted to a specialist children's hospital in the Republic of Ireland

Abstract

Aim. This article presents the core concept of 'visible-ness' that emerged from an ethnographic study, which explored the nature of communication, for children (for ease of reading children refers to children and young people), admitted to a children's hospital in the Republic of Ireland. Background. The importance of engaging with both child and family has been espoused as fundamental in promoting 'family'-centred care. To date, studies have almost exclusively explored parents' and nurses' perspectives of the nature of parent participation and nurse-parent interactions and relationships. Although there is evidence of an emerging body of knowledge, which explores children's perspectives of their information, and communication needs, little is known empirically about the communication process between children and members of the health care team in inpatient hospital settings. Design. The principles of ethnography underpinned the study design. Method. Fieldwork took place over four months in one 35-bedded children's ward. Forty-nine children, ranging in ages from 6 to 16 years with a variety of medical and surgical conditions, participated. Various modes of data collection were employed, namely semi-participant observations, unstructured interviews, draw and write technique and a child-friendly 'stick a star' quiz. Results. The core concept to emerge was that of 'visible-ness'. 'Visible-ness' existed along a continuum consisting of two polar ends, 'being overshadowed' and 'being at the forefront'. These polar ends illuminated the degree to which children were, or wanted to be, included in the communication process and the extent to which children's agenda was addressed. Conclusion. This study provides empirical insight into children's experiences of communication in an inpatient hospital setting. A key recommendation calls for the development of communication assessment strategies to determine the 'ideal' position children would like to occupy, at any given point in time, along the 'visible-ness' continuum. Relevance to practice. This study emphasises the need for all health professionals to embrace the individualism of each child patient with regard to their specific communication needs.

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

“…In the contemporary study, children appreciated handing over responsibility to their parents at times and sharing decision-making with them. This finding is in accordance with previous studies by Lambert et al [24,25], who found that children want to waver between being a “passive bystander” and an “active participant” in the communication process, depending on the situation. Children often want to be involved and to participate in and to contribute to shared decision-making.…”

“…During the last few decades, studies have been performed with instead of on children. These studies have provided new and important knowledge about, for instance, children’s experiences with regard to the hospital environment [21-23], communication [24,25], consultation [26], short-term illnesses [27,28], chronic illnesses in general [29], and diabetes [30,31]. …”

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“…In these situations, the parent did always repeat the information to the HCP; however, if they had chosen not to, RN’s role would have been further challenged, as to act in the child’s and/or families best interests RN would have needed to have actively intervened and informed the MDT of the concerns. Additionally, as Lambert et al [50] suggest, the dividing line between informal discussions with participants and more formal interviews is hard to differentiate at times, reinforcing the need in our study for RN to regularly remind participants of her role as a researcher.…”

“…One concern raised in relation to this type of research is that the presence of a researcher may potentially disturb natural interactions and trigger a change in the behaviour of those being observed [50]. Carnevale et al [6] expressed concerns that observations could be obtrusive and/or psychologically distressing for some participants.…”

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“…Lambert et al (46) found that children's participation in the communication process was based on the children's ability to articulate their desire to engage in the communication process, health professionals' attitudes towards communication with children and the hospital environment itself.…”