Forjando nuevas culturas en GAD

Ethical approval

Ethical approval for this phase of the project was obtained from the Bradford NHS Research Ethics Committee (ref. 10/1007/47). Research governance approval was obtained from the relevant NHS trusts (seeAppendix 4).

In-depth individual interviews were used to describe, explore and explain stakeholders’views and experiences of open disclosure in health care. The rationale for selecting a qualitative approach was threefold. Firstly, little research has been conducted in the UK in this area to date; qualitative methods are ideally suited to reveal the range of views or practices and key issues that might be missed through the use of more structured data collection instruments. Secondly, in-depth interviews are the most effective and valid way of exploring people’s experiences, beliefs and meanings, from the perspective of the respondent, in order to provide a‘rich’data set which is grounded in the experiences of the interviewees themselves. Thirdly, one of the strengths of qualitative research is that it can identify the complex ways in which particular beliefs or experiences are likely to influence behaviour.

Perspectives were likely to vary according to stakeholder, health-care setting and participant demographics; therefore, we employed sampling strategies and data collection techniques that allowed for an inductive, hypothesis-generating approach to interpretation of the data.

Populations studied

In order to explore the views of a range of stakeholders who might contribute to open disclosure, with diverse clinical backgrounds and differing degrees of patient contact in a variety of health-care contexts, study participants were strategically selected from four different groups:

l Policy-makers Individuals with a current or previous position of responsibility for developing health policy, and in particular the Being Open guidance.

l Professional organisations Individuals from professional organisations that represent or regulate the health professions.

l NHS managers and health professionals Health-care managers included members of the senior

management team, some of whom had dual clinical and management roles. Health professionals were staff who carried out work on the_‘shop floor_’, from matron and consultant level to junior doctors and nurses (from band 5 up).

l Patients and patient organisations Participants were approached through national patient groups. Participants could include patient advocates and those with experiences of disclosure or a lack of disclosure.

Details of the original sampling framework and the planned participant numbers in each group are shown inAppendix 1.

Recruitment and consent

Recruitment procedures were tailored according to the stakeholder groups. Policy-makers, leaders of professional and patient organisations and senior managers were contacted in the first instance by a targeted letter from the research team. All other participants were contacted, in the first instance, by an appropriate member of the identified organisation. In all cases, potential participants were sent

information about the study and asked to return a short slip (or contact the research team by e-mail or telephone if preferred) to discuss participation.

A member of the research team then contacted respondents to explain the nature and purpose of the study. In the case of patient participants, we emphasised that the research would not directly help them to seek a remedy or redress for any problems they may have experienced related to the disclosure of adverse events. Where people expressed willingness to participate, the researcher made arrangements to hold an individual interview at a time and place convenient for the respondent. A small number of interviews were conducted over the telephone if specifically requested by the participant.

Prior to the commencement of interviews, the researcher reminded participants of the purpose of the research; asked respondents if they had any further questions; checked that they were still happy to take part; and reminded them that they could stop the interview or withdraw from the study at any time.

Data collection

The aim of the interviews was to explore:

l stakeholders’general awareness and understanding of open disclosure

l their personal experiences and perceptions of both the principle of openness in relation to disclosure of adverse incidents and the Being Open guidance, in the context of their own position in relation to health care

l their views on the contribution that they might make to promote and enhance open disclosure

l their thoughts about the Being Open guidance.

Although all interviews shared these aims, the emphasis in the interviews varied by stakeholder group. Interviews with policy-makers focused on the development of the Being Open guidance and perceptions of its current use. With professional organisations, the translation of national and local guidance into practice was emphasised, along with the perceived contribution that such organisations can make to support health professionals in delivering open disclosure. Interviews with NHS managers and staff explored experiences of open disclosure and of implementing the Being Open guidance specifically. We also explored the challenges of discussing adverse events with patients. Representatives from patient organisations were asked about their perceptions of open disclosure in the policy context and from a broader patient perspective, and patients were asked to share their individual experiences and beliefs. A core topic guide (seeAppendix 5) covering these investigative areas was developed and piloted. This was refined before interviews commenced with the target populations. Interviews opened with questions exploring respondents’broad understanding of the term‘open disclosure’, the reasons for implementing open disclosure, experiences or beliefs about the Being Open guidance and, finally, where the challenges lie. Modified versions of the topic guide were developed for use with each stakeholder group. After initial interviews, some minor alterations were made to the wording of the guide to be used with NHS

managers, to make it more sensitive to exploring the experiences of this group.

Data analysis

Interviews were audiotaped and fully transcribed. Transcripts were analysed using framework analysis.36

This approach was selected for several reasons. Firstly, it is especially well suited to applied qualitative research, in which the objectives of the investigation are typically set a priori, and shaped by the information requirements of the funding body, rather than wholly emerging from a reflexive research process. Secondly, framework analysis provides a visible method which can be scrutinised, carried out, and discussed and operated by individuals in a team. Lastly, the approach lends itself to reconsidering and reworking ideas because the analysis follows a well-defined procedure, which can be documented and accessed by several members of a research team.

Framework analysis comprised the following steps:

l Familiarisation with the data, sometimes referred to as_‘immersion_’.

l Systematic coding of the data.

l Charting of data using a Microsoft Excel 2010 spreadsheet (Microsoft Corporation, Redmond, WA, USA). Charts contained summaries of data (supported by references to data points in the original transcripts), so the research team was able to build a matrix to see across cases and the range of data under themes.

l Mapping and interpretation of the data in order to explore relationships between the codes. Each of the three researchers (YB, RH, KB) most involved in fieldwork took a sample of interviews, and initial data were open coded. The coding framework emerged from a focus on the questions posed by the research document, but at initial stages was also open to emergent codes. The coding framework was further developed through discussions with members of the wider research team with extensive qualitative (VE) and clinical (IW) experience, to discuss emerging codes and categories, the interpretation of key texts and potential new lines of enquiry. The coding framework is included inAppendix 6.

Data sampling

Sampling decisions always fluctuate between the aims of covering as wide a field as possible and conducting analyses which are as deep as possible.37_{A strategic decision was made to aim for depth in}

analysing the qualitative interview data, as we sought to present findings which were‘rich’in relevant information. All interviews were coded, and 33 interview transcripts were selected for in-depth analysis, to represent diversity in the total data set of 86 interviews. The interviews were selected strategically from the complete data set using maximum variation sampling;38_{that is to say, they included}

‘typical’cases (reflecting the views of the majority of respondents),_‘deviant_’cases (extreme cases of the phenomena under investigation) and‘critical’cases (those that appeared to be especially information rich and thus particularly illuminating). These 33 interviews related to 33 participants (four policy-makers, four professional organisations, 10 health-care managers, 12 health professionals and three patients/family members who had experienced error). Although these transcripts formed the basis of the analysis, data from across the whole sample contributed to the analysis. The selected transcripts included interviews with males and females, who had wide-ranging views and experiences of open disclosure (seeAppendix 7for a detailed participant breakdown).

Rigour and transparency in the analytic process

Analytic rigour and accurate interpretation of data were promoted and enhanced in a number of ways. The three team members most closely involved in fieldwork (YB, RH, KB) met frequently to discuss data collection and analysis. At regular intervals, meetings were held with members of the wider research team with extensive qualitative (VE) and clinical (IW) experience, to discuss emerging codes and categories, the interpretation of key texts and potential new lines of enquiry. In this way, the combined insights of those

‘handling’the data closely and members of the team with a wider perspective of methodological and open disclosure issues could be incorporated into the coding framework to be used for all data analysis (see

Appendix 6). In addition, a small subsample of transcripts coded using this agreed framework (n=5) were examined by a member of the wider research team (VE) as an independent check on the assignment of codes to data.

The framework approach to data analysis allowed data to be compared within cases, facilitating the exploration of contextual meaning; comparing cases across the data set facilitated the search for

regularities (key themes) and exceptions (negative cases). The use of memos during initial stages of analysis provided a visible‘audit trail’as the analysis moved from‘raw’data, through interpretation to the

production of findings. A reflexive approach has been taken throughout the entire research process, from the initial development of the research questions, through data collection and analysis (for a full statement on reflexivity seeAppendix 8).

Chapter 3

Results