La interacció a l‘aula de 3r d'ESO Narració de l'experiència

During the design of the research, I met with pain teams to develop the participant inclusion and exclusion criteria. This was invaluable in developing a ‘meaningful’ sample that could help achieve theoretical saturation about the experience of person centred care. Table 8 details the inclusion and exclusion criteria that were developed based on the purposive sampling strategy and following discussions with the pain teams.

Participant Inclusion Criteria.

1: Who were receiving care/or have received care from the multi-professional pain management service.

2: Who have a confirmed diagnosis of chronic back pain/injury

3: Who have been registered with the service for a minimum of six weeks (apart from Fathersham participants*).

5: Who were over the age of 16 years

6: Who could converse in English and answer questions Participant Exclusion Criteria

1: those under the age of 16

2: People who were unable to converse fully in an interview 3: People who had been registered for less than six weeks.

*Because of the intermittent episodes of care experienced at the Fathersham sites, participants were only included if they had a prolonged experience of the pain team for 12 months or longer.

Table 8: Inclusion & Exclusion Criteria.

The pain teams emphasised the need to select people who had completed the programme, thus ensuring that the full experience of the pain team was captured including the journey to the pain team and the outcome of care. At Fathersham, the team advised that people who had been attending the pain clinic for at least one year should be selected because of the intermittent contact over a prolonged period of time

85 and the impact on their ability to describe the team in its entirety. Based on discussions with the pain teams, the decision was made to include those people who had either successfully completed a PMP or in the case of Fathersham; those who had been under the care of the team for at least one year.

3.6.1. Accessing the Participants- Gaining Ethical Approval.

Once the inclusion criteria had been formed, the next challenge was to gain ethical and research governance approval from the relevant organisations. It is widely accepted that ethical approval is needed before any study can commence and significantly, research conducted in the NHS also needs approval from the local research ethics committee (REC) and the host organisation’s Research Governance Committee. A number of professional frameworks are available to researchers to guide researchers and support them through the ethical application process. The Economic Social Research Council Research Ethics framework (ESRC 2006) is a framework that guides researchers through the myriad of ethical dilemmas, constraints and areas of research that require consideration. The ESRC advocate 6 key principles, which researchers need to consider in the design, conduct and management of their research. The principles reflect the need for the participant’s safety, rights and highlight the significance of ensuring that risks of the research are comprehensively addressed. The ESRC principles are predicated on the World Medical Association Declaration of Helsinki (1964), which advocates a humanist approach to those involved in biomedical research. This approach prevents harm to the research participant through the consideration of beneficence, non- maleficence, veracity, trust and fidelity. Hence, all research conducted with patients and vulnerable groups have to comply with the ethical principles (see table 9).

As a student, I also needed ethical approval from the university ethics committee as well as the NHS sites involved. As a fairly experienced researcher, completing the requirements for ethics was not arduous and whilst the form was time consuming, the questions encourage applicants to examine whether the research proposed was methodologically and ethically robust. Although the topic area was not thought to be ‘sensitive’, I acknowledged that any interview with participants could attract an element

86 of risk and discussing any chronic disabling condition may promote feelings of anger, upset, or pain about their sense of loss. To address any sensitive or distressing issues which could arise, the pain teams were asked if they could be available if any participants needed to discuss concerns with them following interview. In addition, the participants and both ethics committees were reassured that should any participants feel distressed or upset by any of the interview discussion, the interview would be stopped and the participant provided with an opportunity to contact the researcher at a later date or see a pain nurse. I also felt that as a qualified nurse with over 10 years’ experience I would be able to use my professional skills to comfort participants who became distressed.

ESRC Framework for Research Ethics

Research should be designed, reviewed and undertaken to ensure integrity and quality

Research staff and subjects should be fully informed about the purpose, methods and intended possible uses of the research, what their participation in the research entails and what risks, if any, are involved

The confidentiality of information supplied by research subjects and the anonymity of respondents must be respected.

Research participants must participate in a voluntary way, free from any coercion.

Harm to research participants must be avoided.

The independence of research must be clear, and any conflicts of interest or partiality must be made explicit.

Table 9: ESRC Framework of Research Ethics.

The ESRC ethical principles state that the proposal should clearly outline how confidentiality will be maintained and ensure that the participants are fully informed about the intentions, expectation and publications associated with the research. Hence, Data Protection (1998) requirements were addressed and an account of how participants would be supported if they wanted to withdraw from the study was included. Approval was gained from the two ethics committee approximately 6 weeks

87 after the original application. No amendments were requested and the ethics committee was satisfied that the proposal had considered the ethical implications.

In addition to ethical approval, any research hosted on NHS or social care premises with staff or patients requires Research Governance approval from the host organisation. Similar to the ethical process, gaining research governance approval meant addressing the safety and well-being of the participants in the study and ensuring that the design was scientifically and financially sound, of relevance to the NHS and would be disseminated in a manner that would represent the views of the public (DH 2001b). Importantly, researchers are only able to access NHS sites once approved by each of the Research Governance committee in each site. This has a significant influence on the research process because external researchers are required to obtain honorary contracts from the NHS organisations in order that they can proceed with the study. This process can take some time, however approval for the study was uneventful and access to NHS sites was granted three months following application.

3.6.3. Approval Gained – Access Denied.

Although ethical approval was granted, accessing the participants presented some challenges. The Data Protection Act (1998) had a big impact on the recruitment strategy as external researchers are not allowed access to patients’ files or personal details. As such, the teams were fundamental in generating a contact list of people, (with consent) who had recently been through a PMP. Once satisfied with the overall design of the study, and following ethical and research governance approval meetings were held again with the pain teams to gain their support for the study and help with the recruitment process. All the teams except the Salisbury site were happy for the study to take place and were keen to help; however, the team at Salisbury were reluctant to provide access to their patients because they had concerns about the sample size, which originated through questions raised in the meeting by the clinical psychologists. This was interesting for a number of reasons, but mainly because it highlighted a paradigmatic tension between the positivist ontological position of the psychologists’ need to seek out a single truth and to generalise with the constructivist’s assumptions about reality and

88 ‘transferability of findings (Lincoln & Guba 1995). Following further negotiations with the team at Salisbury, access was finally granted.

3.7. Recruiting the Participants: Blending Snowball and Purposive Methods