Michele Glacken

Engaging with children in research Theoretical and practical implications of negotiating informed consent/assent

At the outset of an ethnographic inquiry, we navigated national and international resources to search for theoretical and practical guidance on obtaining parents and children’s informed consent/assent. While much theoretical guidance debating ethical issues to children’s participation in research was found, a paucity of published papers offering practical guidance on assent processes and/or visual representations of child assent forms and information sheets was discovered. The purpose of this article is to describe our experiences, both theoretically and practically, of negotiating the process of obtaining informed consent and assent with parents and children for a non-therapeutic qualitative research study. We hope this article instigates a platform for others to explicate their experience and contributes to the construction of a coherent body of knowledge which will clearly delineate important elements that must be considered when negotiating children’s agreement to participate in research.

Clinical support roles: a review of the literature

It is widely acknowledged in the literature that the amalgamation of theory with practice is crucial to the development of competent practitioners. The United Kingdom Central Council for Nursing, Midwifery and Health Visiting [United Kingdom Central Council for Nursing, Midwifery and Health Visiting 1986. Project 2000: A new preparation for practice. United Kingdom Central Council for Nursing, Midwifery and Health Visiting, London] and An Bord Altranais [An Bord Altranais, 2000b. Requirements and standards for Nurse Registration Education Programme. second ed., An Bord Altranais, Dublin] acknowledge that in order to facilitate nursing students to make this vital link, support structures in terms of designated personnel in the clinical area are required. This has resulted in the emergence of a diverse range of designated clinical personnel with varying titles and responsibilities. It is timely given the current constrained economic climate, recruitment and retention difficulties and persisting theory-practice gap to consider the efficacy of past and current post-holders from the perspective of various stake-holders before any further posts are developed. The remit of this paper is to present such a review and advance a number of recommendations that could augment the effectiveness of current support roles.

Communication between children and health professionals in a child hospital setting: a Child Transitional Communication Model

AIM This paper is a report of a further analysis of data from an ethnographic study of the nature of communication between children and health professionals in a child hospital setting. BACKGROUND There is a paucity of research on the nature of communication between health professionals and child patients. Additionally, theory has not been developed to any great extent in the communication literature on children. METHOD Using an ethnographic approach, fieldwork took place in one specialized childrens hospital during 2005. Forty-nine children, aged 6-16 years, with a variety of medical and surgical conditions, participated. Data were collected through semi-participant observations, unstructured interviews, participatory activities and documentary evidence. FINDINGS Health professionals positioned children as either passive bystanders or active participants in the communication process. These two positions, passive bystander and active participant, signified the extent of childrens inclusion or exclusion in the communication process and the degree to which childrens communication needs were met or not. A Child Transitional Communication Model presented in this paper draws on multiple theoretical perspectives to explain why health professionals placed children as either a passive bystander or an active participant in the communication process. CONCLUSION Children prefer to oscillate between a passive bystander and active participant position within the communication process, depending on their needs at any given point in time. This challenges the insistence for stronger child participation in all matters that affect them, in isolation of debates surrounding childrens need for support/protection and any potential negative consequences of childrens active participation.

Young children's perspectives of ideal physical design features for hospital-built environments

Recently, increased recognition has been attributed to the requirement to include the views of child patients in the planning of new health care services so that contemporary buildings can be designed to enhance future experience. This is important, especially since the voices of young children are so often under-represented or represented through adult proxies. The purpose of this article is to share young children’s perspectives of what constitutes ideal physical design features for hospital-built environments. Using a participatory art-based approach, data were collected from 55 children (aged five–eight years) across three children’s hospitals in Ireland. Emergent findings revealed three broad themes: personal space, physical environment and access. This study is important for nurses, clinicians and environmental designers because it outlines what a supportive child health care environment should constitute. Hospital environments need to be constructed not just to be child friendly, but to also respect children’s right to dignity, privacy, family support and self-control.

Using a range of methods to access children's voices:

The purpose of this paper is to describe, and reflect upon, a number of methods deployed to facilitate sick children to have a voice within an acute health care setting. Using an ethnographic approach to investigate the nature of communication between children and health professionals, multiple modes of data collection were employed to engage childrens interest, motivation and facilitate child empowerment in the process. The simultaneous use of semi-participant observations, informal interviews and participatory activities ensured that the diverse abilities, interests and preferences of children were acknowledged. Multiple data sources permitted the portrayal of a comprehensive picture which we believe enhanced the trustworthiness of the data. However, as with all data collection methods, researchers need to be critically aware of strengths and weaknesses and these will be reflected upon. Ultimately, it was crucial to use participatory activities in context and have continuous dialogue with the participating children. The goal was to achieve a balance between creative instruments and commonplace conversation. We believe the unstructured and flexible approach, and variety of data collection methods, utilised in our study enhanced its accuracy, truthfulness and reduced the subjectivity of childrens responses. In sharing our experiences, we endeavour to assist other researchers in conducting research with children.

Social spaces for young children in hospital

BACKGROUND In the last number of years heightened interest has been attributed to the impact of hospital environments on childrens psychosocial well-being. With policy largely built around adult assumptions, knowledge about what constitutes a child-friendly hospital environment from young childrens perspectives has been lacking. If hospital environments are to aspire to being child friendly then the views of younger aged children must be taken into account. The current study investigated young childrens perspectives of hospital social spaces to inform the design of the built environment of a new childrens hospital. METHODS An exploratory qualitative participatory design was employed. Data were collected through semi-structured interviews (one-to-one and group workshops) which incorporated art-based activities to actively engage young children. Fifty-five young children aged 5 to 8 years with various acute and chronic illnesses were recruited from inpatient, outpatient and emergency departments of three childrens hospitals. RESULTS Young children want a diversity of readily available, independently accessible, age, gender and developmentally appropriate leisure and entertainment facilities seamlessly integrated throughout the hospital environment. Such activities were invaluable for creating a positive hospital experience for children by combating boredom, enriching choice and control and reducing a sense of isolation through enhanced socialization. When in hospital, young children want to feel socially connected to the internal hospital community as well as to the outside world. Technology can assist to broaden the spectrum of childrens social connectivity when in hospital - to home, school and the wider outside world. CONCLUSION While technology offers many opportunities to support childrens psychosocial well-being when in confined healthcare spaces, the implementation and operation of such services and systems require much further research in the areas of ethics, facilitation, organizational impact and evaluation.

Meeting the information needs of children in hospital

The provision of information is an individual entitlement and a prerequisite to enabling children to understand their illness, make choices about their health care and be involved in decision-making processes around these choices. However, limited evidence exists on children’s perspectives of information provision while an inpatient in hospital. The aim of this paper is to describe the process of information exchange between health professionals and children in hospital. Informed by an ethnographic design, data were collected using multiple methods, including semi-participant observations, interviews and participatory activities. Forty-nine children aged six to 16 years, with a variety of medical and surgical conditions, admitted to one childrens ward at one childrens hospital participated in the research. Findings revealed that children encountered a variety of information management experiences. The key message for health professionals is that there is a need to develop child- and family-focussed strategies for assessing children’s information needs in order to determine their preferences for information (amount, format, from whom, etc.), to develop a method for gaining an appreciation of parents’ and health professionals’ beliefs about the optimal amount and type of information to relay to children, and to achieve consensus about who is best placed to transmit this information to children.