Informed consent

A key step in ensuring research participants are dealt with in an ethical manner is to provide them with sufficient information to make an informed decision about whether to take part in the study. Participants need to be fully informed of the nature of the research and the potential costs and benefits, which might occur from taking part (Polit and Hungler 1999). They also need to be reassured that their contributions or their identities will not be abused.

While achieving informed consent was required for all participants in this study, it had particular importance for the nursing students, as I would be asking them personal questions about being dyslexic and talking about their performance with clinical mentors. As previously stated in chapter four (page 43), there is some evidence from the literature that dyslexic adult students have lower self-esteem than non-dyslexic students (Riddick et al 1999), and that disclosing a diagnosis of dyslexia opens them up to other peoples’ negative attitudes towards their learning difficulty (Anonymous 1994; Stephenson 1999; Wiles 2001; Allen 2002; Shepherd 2002; Blankfield 2002). As the students were on a training programme they might also feel that taking part in such a study could affect their ability to qualify as a nurse. In an attempt to allay any concerns, I felt it was very important that at all times the students felt in control of who knew they were dyslexic. I informed the students that I would be questioning them about their specific learning needs within a nursing context, how I would ensure that information was kept confidential and that their contribution would be anonymous in the final report.

The educational institutions also had a duty to ensure that information about their students is kept confidential. Therefore, I agreed with the ethical committee in both schools that a designated officer in each school would approach the students on my behalf to seek their initial agreement to speak to me about the study. These officers were important ‘gatekeepers’ for this study as it was through them that I sought to recruit the students into the study. Their role was to impart information about the study to the students and deal with any initial queries that arose. As they were acting as recruiters on my behalf, I needed the officers to present

participation in the study in an appealing way to the students so that they would consider taking part.

In the University of Glynrith, the school designated special needs officer, who supported the students and knew them well, acted as intermediary. In the

University of Pimbury, the deputy head of school took on this role, as there was no equivalent support officer in the school. The deputy head did not know the

The consequence of approaching the students through another person was that I became reliant on their abilities to explain the study with sufficient enthusiasm to ensure the students sought me out to know more. In the University of Glynrith the special needs lecturer recruited three out of four available students for stage one, (the fourth wrote and said she had family problems and would find taking part too stressful) and all available students (four in total) for stage two. This officer

approached the students on an individual basis to explain the study. She was enthusiastic about the research I was undertaking and was keen that the students be involved.

The deputy head of school at the University of Pimbury was less successful and only recruited five out of a possible forty students for stage one. She had decided to present my request to whole cohorts of students at the beginning of a lecture, rather than targeting individuals. While the information about the study in written form was consistent the two approaches to recruitment were not. The relationship the special needs lecturer had with the students and her evident enthusiasm for my study appeared to play a significant part in her ability to recruit the students to the study.

Information was communicated to all participants in two ways, verbally (either from me personally or, in the case of the students, by designated officers from within the schools) and via written information sheets. The information sheets were designed for each participant group so that only relevant information was presented, e.g. admissions lecturers.

The layout of the information sheets was dictated by the LRECs and was based on the Guidelines for Good Clinical Practice (1996, section 4.8.10 pages 16-17)

developed by the International Conference on Harmonisation of Technical

Requirements for Registration of Pharmaceuticals for Human Use (ICH) and Multi­ centre Research Ethics Committee, General Guidance for Researchers (WWW, 2004). The information sheets included:

• The nature and purpose of the study

• That taking part is a voluntary decision and that the participant could withdraw at any time and without giving a reason

• A description of what will happen to the participant during the study and what the participant will be asked to do, e.g. being interviewed.

• Potential benefits or risks - the only potential risks were to the students through the disclosure of information about them being dyslexic. As

explained above I took great care to ensure they remained in control of this information throughout the study. These safety measures were described in the student information sheet.

• My contact details

Once the participants had agreed verbally to take part in the study, having had the opportunity to hear me describe what was involved, I asked them to sign a consent form. As with the information sheet the consent forms were designed for the

specific groups in the two stages of the study.

During the time I recruited subjects for the study and throughout the data collection phase, I was employed in a quality assurance role to the nurse education sector. I was conscious that my job carried with it a degree of authority and power, which may have inappropriately influenced any of the participants to take part in the study. I therefore made a point of explaining that my activity in respect of this study was separate from my employment and that taking part in the study would have no effect on either the individual’s future employment or continuation of the course.