Evidence and Practice
Ethical considerations when conducting research with children and young people with disabilities in health and social care
Using group concept mapping to explore the complexities of managing children’s care
Ethical challenges in accessing participants at a research site
Clinical
Ethical considerations when conducting research with children and young people with...
Background Rights-based approaches for conducting research with children and young people are now widely accepted by those working in the field. Such approaches focus on the voice of the child and are underpinned by a firm recognition that children are experts on their own lives. However, children and young people with disabilities are less likely to take part in research. Aim To draw on doctoral research conducted with children and young people with disabilities to explore the ethical issues that arose concerning access, recruitment, consent, anonymity, confidentiality and sensitive issues, as well as what mitigated these issues. Discussion Research with children and young people with disabilities can pose additional ethical challenges. There is a growing body of literature about this area, but it needs further development. Conclusion Additional planning and preparation are vital in ensuring that children and young people with disabilities can participate in research in a meaningful way and that researchers conduct studies ethically. Implications for practice This paper has clear implications for research and nursing practice in terms of communicating with children and young people with disabilities, enabling them to express their views and participate in decisions about their lives.
Using group concept mapping to explore the complexities of managing children’s care
Background Children whose assessed health needs cannot be met by statutory and universal services may require bespoke packages of continuing care. A project management group was set up to design a study that would explore the complexities for a children’s community nurse (CCN) of managing such packages. Methodology Group concept mapping (GCM), a mixed quantitative/qualitative participant-centred methodology, was used to obtain consensus from 20 CCNs about the complexities inherent in managing such packages and to develop a concept map that illustrated the emerging conceptual framework. Discussion The participants’ ideas were written as statements and analysed. Core analysis of a square symmetrical matrix through multidimensional scaling and hierarchical cluster analysis was undertaken to produce a set of maps and reports. The final concept map was interpreted. It contained 99 statements organised into five conceptual clusters: ‘education and training’ (17 statements), ‘risk and safety’ (15 statements), ‘continuing care process’ (17 statements), ‘relationships and boundaries’ (22 statements) and ‘working with families’ (28 statements). Conclusion CCNs used GCM to explore their roles and responsibilities when managing children’s continuing care. Their resulting ideas were developed into a five-cluster conceptual framework that illustrated their views about the complexities of managing such care. Implications for practice The emergent conceptual framework enables CCNs to explore their practice in relation to managing packages of care. Additionally, the framework will be used to design a CCN workforce planning instrument that will be useful to measure complexity in CCN caseloads. The GCM methodology could be used by other nursing teams who wish to develop their practice.
Ethical challenges in accessing participants at a research site
Background One of the main requirements of qualitative research is to obtain access to participants. Researchers rely on gatekeepers for access to study sites and their communities of stakeholders, opportunities to communicate their studies to potential participants, and to locate meeting and interview spaces. Aim To share the challenges the authors encountered with gatekeepers during a study and how they managed these challenges. Discussion The authors conducted a focused ethnographic study in two healthcare organisations. Their goal was to recruit, interview and observe staff from across the institutions and a range of occupational groups, to explore their experiences of teamwork and the effects their work relationships had on their job satisfaction. Managers in the organisations were enthusiastic about the study, providing much needed support to the authors. However, the authors became concerned that staff might have felt inadvertently coerced to participate in the study. This challenged the authors’ notions of research ethics, prompting discussion about how to best manage aspects of the study, such as information sessions, snowball sampling and consent. Conclusion Explaining the principles of research ethics to gatekeepers can prevent them inadvertently making employees feel coerced into participating. Ensuring potential participants are fully aware of their rights and the voluntary nature of the study can make them more likely to participate. Implications for practice Before any study begins and frequently during the study, it is important that researchers discuss with potential participants and gatekeepers ethical principles, including confidentiality, anonymity and the right to participate or withdraw from the study.
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