The research process

The method used for this study did not facilitate large numbers, but, in keeping with other forms of qualitative data generated through face-to-face interviews, the numbers are small. For the purposes of this study, the sample size was 20 learning disability nurses registered with the Nursing & Midwifery Council who had been working with people with learning disabilities in the past 30 years in England.

In order to meet the research objectives identified for this study whilst utilising a biographical narrative approach to the interviews the following Single Question Aimed at Inducing Narrative (SQUIN) was used:

As you know I am interested in the experiences of learning disability nurses over the last 30 years. Please tell me about your career as a learning disability nurse starting from when you began to think about your nurse training to now.

In order to gain rich data using the methodology I needed to be cognisant of the issues around numbers of learning disability nurses working inside and outside the NHS at the time of data collection. As a learning disability nurse academic at the time, I was aware of the impact of changes in service provision across England. There had been an overall decrease in the numbers of learning disability nurses, not only appearing on the NMC register (NMC, 2010) but also a change in commissioning over around a decade reported in the literature by a number of commentators (Gates, 2009; Barr & Gates, 2008) and changes in the places in

which learning disability nurses work in a wide variety of non-NHS workplaces (Gates, 2010). Data from the NHS information centre in 2009 suggested that only around 6,600 learning disability nurses were working in the NHS at this time. Whilst biographical narrative studies do not necessarily concern themselves with representative sampling, it is important to acknowledge that, whilst the numbers in my study were small, they came from nine counties across England and included nurses working in a variety of settings.

3.4.1 Population target

Those nurses working in Scotland, Wales or Northern Ireland were excluded from the study in order to retain a focus on England, as the health and social care policies across the countries in UK can vary. The following were also exclusion criteria for this study:

• Lack of consent given to participate in the study

• Those nurses who have not maintained their registration with the NMC or those who have maintained their registration but who have not been working with people with learning disabilities in the past 30 years.

• Inability to respond to an interview conducted in the English language.

3.4.2 Engaging the sample

It had been recognised that a large percentage of learning disability nurses did not work within NHS settings and many, although registered with the NMC, were not currently in roles acknowledged as nursing roles. For the study it was important to capture the experiences of not only those nurses working in NHS settings but those who were not. This led to a challenge in relation to recruitment of nurses who may not be located through regular modes, such as union/professional body membership or through NHS Trust locations. As it had become clear that nurses were working in a diverse range of settings, many were still accessing online forums for support and discussion, so the sample were recruited by advertising within online professional networks via social networking sites. A number of online forums exist and these have an advantage of encompassing those learning disability nurses working in a diverse

range of settings and, as the original intention had been to use web-based discussion as a follow up mechanism for the interviews, those who are already utilising web-based discussions. It has been a view held and supported by researchers that the population of those that use the internet is skewed in favour of the young, upper middle class and well educated, and therefore questions around the validity of samples drawn from this population have been articulated for some time. However, as Hewson et al (2003) note, the growth in internet use over the past decade has changed this view somewhat and the profile of populations who use the internet and web 2.0 technologies has changed.

An invitation (appendix 2) was posted on the appropriate online forum and this was followed up by personal invitations via email to take part. The invitation letter (appendix 3), participant information sheet (appendix 4) and consent form (appendix 5) were emailed to those interested. ‘Snowballing’ was also used, where potential participants highlighted individuals who may also be interested in the study. Those participants contacted via a third party were sent clear details of why they were being contacted and who the initial contact was.

3.4.3 Ethical issues

Ethical approval for the study was gained through De Montfort University Faculty of Health and Life Sciences Ethics Committee (see appendix 6). The learning disability nurses in the study were accessed through a variety of online based forums and, whilst on the NMC register and working as learning disability nurses, this was not necessarily in NHS settings and, therefore, there was no requirement to seek approval via the National Health Service Ethics Committee.

Ethical guidelines exist in a variety of forms and, for the nurses involved in this study, the NMC Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives (2008) was an underpinning ethical framework. Additionally, research governance frameworks (DH, 2005) assisted to ensure standards of ethics were adhered to for the study.

Written consent was gained by the researcher prior to the arrangement of the interview via email. The consent form was sent to all participants via email, and a hard copy of the consent form was also taken to the interview to be signed by the respondent, with clear information within the participant information sheet that consent may be withdrawn at any time, both during and after the interviews, with no repercussions for the respondent.

3.4.4 Anonymity and privacy

All individuals were initially given a code identifier and they later agreed a pseudonym. Any material related to that individual was then identified using that pseudonym.

The world of learning disability nursing, however, is a small world and it has been made clear to participants that, wherever data may be presented publicly, any potentially identifying information would be removed. This include people’s names, place names, and areas where the participant had asserted that they were wary about how their data would be represented through using phrases such as ‘be careful how you write this one’. Potentially sensitive data and that which may identify the individual was highlighted in the transcription when returned via email to the

participant, and they were asked to review this and amend where appropriate. Beyond the obvious identifiers, such as people and place names, there was sensitive data that needed careful handling within a relatively small professional group. One participant had a terminal illness that had been publicly shared in a variety of settings prior to the study. The illness was a key part of her story and she was happy to share this during the interview, but when presenting initial findings at a conference it was crucial that her data was presented in such a way that she was not recognised to enable her to maintain her anonymity in that setting. Participants in the study have been able to maintain a connection to the researcher and to the project throughout.