Donna Frost

Chapter 4 94 Working in morally and ethically responsible ways The research proposal for this inquiry was approved by the ethics committee of the University of Ulster, where I was enrolled at the beginning of the study. The proposal was also submitted for approval within all four of the organisations in which the inquiry participants worked, according to each organisation’s policy and procedures for reviewing and approving research activities not covered by the Dutch Research with Human Subjects legislation (Ministerie van Volksgezondheid Welzijn en Sport [Ministry of Public Health Welfare and Sport], 1998 ). This research and the associated inquiry activities were classed variously in the four organisations as service evaluation, quality improvement and professional development. In all cases I received permission to proceed. In the case of the RN inquiry group, which took place in a residential care setting, the Residents’ Council also gave approval. The RN inquiry was explicitly supported by the unit managers concerned and RN inquiry group members were able to participate in work time. The NP inquiry members had permission from their line and unit managers and participated partly in work time and partly in their own time, dependent on local agreements and to a certain extent their own preferences. After institutional consent was gained I was introduced and the inquiry described in team meetings on each of the units where inquiry members worked. My intention was to inform people on the periphery of the inquiry about the project and give them the opportunity to ask questions, before practice situations arose in which they might be asked to participate in aspects of the inquiry. The voluntary nature of the project and the ability to withdraw consent at any time were emphasized and the focus of the research and ways of working were explained. Written information about the study was available in printed and electronic form. Each professional who participated in the study in any capacity signed a consent form. Similarly, patients, clients, residents and their family members who were invited to consider participation received written information and verbal explanations and had the chance to ask questions. Those who agreed to participate signed a consent form. These formal procedures for documenting consent were regarded as the beginning point of the consent process, not the end. In the first place, the impact of participation on individual participants could not be fully anticipated and willingness to remain involved after initial consent was given could not be assumed. Further, despite the intention within the design to support human flourishing for all those involved, there was a danger that we would involve others to our benefit without actively facilitating their benefit from the research. The principles of person-centredness