Ethical Considerations

As with most health related research the aim is to design and execute a study with ethical principles at the forefront. General ethical principles will now be discussed in turn and where relevant ethical procedures will also be referred to in the section sub headed ‘procedure’ (3.3.3).

3.3.2.1 Consent

No contact was made with any potential participant unless they had given verbal permission to be approached by the researcher (or they had contacted the researcher themselves). With permission the researcher introduced herself and briefly introduced the project. Each potential participant was then given an information sheet, either by the researcher, a self-harm team member or a staff member from a local organisation.

The information sheet detailed purposes of the project and what was expected of those who participated, including the risks and benefits. See Appendix 8 for an example of

used for recruitment in the community and for those attending A & E when the researcher was not present.

Written consent (consent 1 – see Appendix 9) was then sought by the researcher for permission to contact the participant to arrange a meeting to discuss the research in detail, this was not consent to participate and was not applicable to those people who contacted the researcher themselves. Potential participants were asked of a

convenient time for the researcher to call and at least 24hrs following the initial introduction was left.

At a second meeting, potential participants were given the opportunity to ask questions and then consent to take part in the research was sought.

3.3.2.2 Confidentiality & anonymity

Participants’ confidentiality was respected at all times; to protect participants’

anonymity any identifiable data were removed and narrative changes or omissions were carried out. For example, names of the participants were changed and names of place, and in some cases references to different diagnoses or treatment were omitted to ensure none of the quotes or images were directly attributable to an individual. No one other than the researcher and the main supervisor had access to identifiable data.

Each participant however was notified (prior to consent) that should they disclose that they are of significant risk to themselves or others, the risk would be communicated to others.

Related to issues of confidentiality and anonymity, using participant generated images introduced the risk of capturing images of an illicit nature; though the risk of illicit images was not considered high for this topic area, the topic being explored did increase the risk of capturing images of a distressing nature. This particular risk was highlighted in the planning stages of the research however this was only considered a risk if images were generated using a disposable camera which required development through an outside agency. Using digital cameras where selection and/ or printing of images were carried out by the participant and / or the researcher was considered more appropriate and a way of minimising the risk to others.

3.3.2.3 Data collection & storage

Audio & Textual Data: Interviews were audio recorded and digital audio files were immediately transferred to a secure server at the University of Leeds. Digital files were

then transcribed, anonymised and kept on a secure server at the University of Leeds with password protection.

Visual data: Participants were considered the owners of the images and permission to keep copies of their images was sought through written consent, including the

permission to use their data (images & text) for dissemination of this study and for possible further analysis in the future. Images were copied digitally from the camera / memory card onto a secure server at the University of Leeds and password protected.

Hard copies were also stored in a locked cabinet.

All participants were referred to by an ID number and any corresponding data was kept separately in a locked cupboard within a locked office. Identifiable data was accessed by the chief investigator and the main supervisor for purposes of safety and wellbeing of the researcher.

Contact details and consent forms of those participants who consented to the study but later withdrew were destroyed.

3.3.2.4 Safety & Wellbeing

For participants: Given the sensitive nature of the topic area and the novel approach being employed, consideration of ethical issues beyond the generic was required.

Subsequently, under consultation with professionals working with people who self-harm and those with personal experience of self-harm further ethical issues were raised;

1) Professionals felt researchers should seek patients’ permission to access details (if any) of relevant care teams they are under in order to:

- Inform relevant professionals of patients participation in the research as they may seek additional support during this time, and

- Document their details in the risk escalation procedure should the patient become increasingly distressed during the research activity.

This information could be sought through the self-harm coordinator or by seeking consent via the application for ethical review to obtain read only access to PARIS (patient database) to access essential index information only. Gathering this

information however wasn’t felt necessary by service users, they felt it patronising and their choice to inform relevant healthcare professionals where necessary (if they felt they required additional support). Also, they felt that only in cases where the participant is felt to be a risk to themselves or others should the researcher inform other health care professionals of their participation.

2) The self-harm team advised that participants who become distressed during research activity should be signposted to A&E or the crisis team based at the nearby hospital not the self-harm team.

3) Inclusion / exclusion criteria re: sample. People who self-harm with a clear intent to kill themselves can sometimes feel belittled if they are approached by self-harm team as they feel their actions do not relate to self-harm, therefore the study excluded those who were considered to be at high risk of suicide. This information was gathered by the self-harm team during their routine assessment and communicated to the researcher where necessary.

4) Talking in confidence with patients in clinical areas was said to be difficult; the researcher was advised to book meeting rooms on certain units during the initial recruitment phase. A neutral place, for example room hire in community centres was suggested as opposed to University offices or participants homes for any subsequent interviews. In practice however hiring rooms in the community was not financially viable or practical due to the high volume of cancellations and rescheduling of meetings with participants. Given the disordered nature of some of the lives of the participants recruited in the study it was considered most appropriate to conduct the meetings at the University and most participants did not object to this.

For the researcher: To ensure the safety of the researcher safety protocols were put in place. For example, the main supervisor was informed of every research visit, including details of location, time of meeting, and anticipated length of time of meeting.

The researcher made contact with the main supervisor prior to and after each meeting.

If the main supervisor was not available then an appropriate other was nominated.

Also, if the researcher experienced any distress as a result of research activity then it was agreed that any activity would be suspended and immediate supervision would be sought. Relevant issues would be discussed with supervisors (where possible) and appropriate / advised action would be taken. Where supervision was not available immediate support from post graduate tutor(s) Dr Bridgette Bewick, Dr Liz Glidewell or Dr Claire Hulme would be sought.

Where necessary further support could also have been sought from the researchers GP / other identified health care professional, or alternatively contact details for other relevant organisations were detailed on the student wellbeing website

http://www.wellbeing.leeds.ac.uk/index.htm.

Despite every effort to address issues of an ethical nature in the planning and reporting of the design process for the purpose of ethical review, I would agree with Clark et al (2010) in that, several issues were not apparent or fully understood until the research process was underway which could be due to both the researchers inexperience of employing such a novel approach, and the dearth of literature reporting on ethical issues related to visual research within the social science and health related literature.

A further discussion of ethical issues raised during the research process can be found in section 3.8.3.

The study was approved by the NHS National Research Ethics Service – Yorkshire &

the Humber – Bradford, reference 11/YH/0163.