Ethical considerations

Ethical approval from the Faculty of Health, Life and Social Sciences Research Ethics and Governance Committee at Edinburgh Napier University was granted prior to commencement of the study (Appendix 1). The wider LCCP programme, of which this study formed part, pursued ethical approval from both the University and the National Research Ethics Committee (NREC).

Ethical issues that emerged that were not specifically addressed in the agreed ethical code of practice provided in the submission to the Ethics Committee are discussed below.

The ward had already volunteered to be part of the LCCP and had agreed to participate in the wider research programme. Thus access to the ward had already been agreed prior to commencement of my study.

Participatory approaches to research such as AI and AR are carried out in the context of practice, and involve close and open communication among the people involved. Because

of this, the researcher must pay close attention to ethical considerations in the conduct of their work (Hart & Bond 1995). Meyer (2006) argues that an important role of the researcher in AR is to ensure the well-being of those who participate, and it is essential that an ethical code of conduct is mutually agreed at the beginning of the study. Meyer recognises however that this has its challenges, because it is difficult for participants to understand fully the nature of the research at the start of a study, since it evolves and changes as it progresses. Winter and Munn-Giddings (2001) therefore argue for an ongoing ethical code as AR is constantly re-negotiated. Issues of consent and confidentiality are considered below.

3.8.3.1 Consent

Information about taking part in the study was given to all participants both verbally and in written form. The information sheets and consent forms for the wider LCCP programme were used to avoid duplication and participants were made aware that I was intending to use the data, with their agreement, for the purpose of my PhD (Appendix 2 and Appendix 3).

Consent needed to be constantly re-negotiated with participants throughout the study. Staff participants gave written and verbal consent at the start of the study. At each point of formal data collection I checked validity of consent by asking the participant whether they were content to progress with data generation and if they could give permission for data to be used in the wider programme. It was not realistic to obtain consent for inclusion of all data generated from informal discussions and observation. In practice, what happened was that I would check out interpretation and use of data when I had opportunities, and when this was not possible, I made sure that in any formal writings, where these data were used, I fed back sections to participants for confirmation that they could be used. This was only possible with staff who continued to work in the setting. For patients and families, written and verbal consent was confirmed prior to, during and after each data generation activity.

Where participants were from potentially vulnerable groups (e.g. those with a terminal illness) discussion took place with both the health care professionals involved in their care, and their family member, about the nature of the study and the extent to which they may be involved in data generation activities.

In relation to patients who had some cognitive difficulty, a principle of contextual and relational assessment was used (Dewing 2007). It was important to examine how the person presented themselves at any given moment and to adopt active listening strategies to gauge participation. This involved attending to how they presented during interviews and their responsiveness to questions. In total 3 of the patients who agreed to work with us in sharing their experience of caring had cognitive difficulties. As will be described later, the use of emotional touchpoints seemed to help these participants focus on the discussions as there were visual cues to assist the process.

Nicholson (2009) notes in her study that few older people found the consent forms and signing of them to be of any real importance. In fact, few seemed interested in the information leaflets about the study. She argued that consent was related to participants allowing her to come into their home and trusting her to hear and value their stories. She suggests that this is related to the process set down by Holloway and Jefferson (2000) of honesty, dignity and respect and relates this to the wider ethic of relatedness. In my study, similarly, patients and their families seemed disinterested in the paperwork and discussions that happened prior to data generation. It seemed that it was much more useful to have discussions after they had participated in the research activity. In this way they had an opportunity to get to know myself and the member of staff who was carrying out the work with me, and had a clearer understanding of what data we were in fact referring to.

The issue of agreeing to data being used in the wider programme can be unclear for participants. They might not be able to envisage their data and its different forms of interpretation presentation. Other authors advocate giving participants a copy of the study report, or articles (Forbat & Henderson 2005). Due to the transient nature of staff and the

likelihood that data may appear in presentations or journal articles long after the study has finished makes this difficult to achieve in practice.

Throughout the time I spent on the ward, I endeavoured to co-author with staff any articles and presentations that were produced. I shared publications with them and, where possible, with any patients or relatives whose data were used in the article and with whom we still had contact.

3.8.3.2 Confidentiality

Confidentiality and anonymity were discussed with all participants, at the start of the study, to give details about how this could realistically be managed, and at the end of the study or data generation activity, when participants could be asked how they would like their contribution to be identified.

I had assumed that people would want confidentiality and anonymity. However this was challenged by one of the participants. The charge nurse on the ward, was keen that his contribution was acknowledged in any presentation of the findings. Kaiser (2009) stresses the need to consider a wider range of confidentiality options in research. She warns against assuming that every person wants complete confidentiality. The research

participant may want to be acknowledged for their contribution. She advocates the use of a post-interview confidentiality check. This approach was adopted in this study as it respects the individual and gives respondents greater control over the data.

Several authors have identified challenges of maintaining confidentiality and anonymity in AR, where small groups of people are involved and thick description of context and roles is given, making it hard to achieve ethical principles in practice (Bridges 2004; Lofman, Pelkonen & Pietila 2004; Meyer 2001). Data were checked out with participants as much as possible throughout the study so they could determine themselves whether they were happy to share this, even if they were made aware that others may be able to identify them.