El sistema nervioso

Thefirst section describes the different approaches to data collection that were adopted for this research and explains how we overcame some of the general limitations of the methods.

Case studies

The case study approach‘focuses on the circumstances, dynamics and complexity of a single case or a small number of cases’.75_{A case is a single unit in a study and can be, for example, a person, a profession}

or an organisation. The case study approach is distinguished from other approaches, in that it does not attempt to control or exclude variables. Rather, it is a holistic approach that enables the complex nature of an issue to be explored.76

As Yin notes, a case study is particularly useful when the study aims to investigate‘a contemporary phenomenon within its real-life context, especially when the boundaries between phenomenon and context are not clearly evident’;76_{for example, in circumstances where the relationship between}

organisational structure, approaches to practice or policy, and outcomes for people using those services, are unclear. The case study approach, therefore, is particularly suited to this research where the ability of people with LTNCs to achieve the outcomes they want may be determined by several factors. For example, having to deal with and navigate multiple services that are governed by many different policy directives might have as much impact as their level of‘impairment’or personal approaches to self-management. Using a case study approach does not preclude any particular method of data collection, but for the purposes of this research, only qualitative methods were used. These comprised in-depth interviews with different stakeholders at the different stages of the research, group interviews, documentary analysis and

field-note analysis.

Qualitative interviews

Qualitative interviews were used in two stages of the research: stages 1 and 3. They can be used to look below superficial and readily observable phenomena, allowing deep exploration of the study topic.75

Interviews can provide information that is able to inform understanding of, for example, people’s opinions and preferences and also why they hold them. They allow for relationships between people, organisations and events to be explored and understood.75,77

An‘in-depth semistructured’approach78_{to interviews was used which allowed in-depth exploration of}

issues. During these types of interviews, the participant is allowed to talk through, or provide a narrative about, the issue being studied. This is important for this research, where we wanted to understand the things that were important to people with LTNCs, to explore reasons for their importance, and how they linked together. Furthermore, in using this method, we were able to explore the variety of factors that affect integration, service provision and outcomes.

Interviews were guided by a topic guide (all topic guides are included inAppendix 1), rather than by pre-set questions, which acted as an aide memoire for the researcher to ensure that relevant topics were addressed while a conversational style was maintained. Additional topics emerged from the dialogue during the interview. All topic guides were reviewed by our advisory group comprising commissioners, front-line professionals, service users and service user/carer representatives.

To counter the limitations of subject bias that can be associated with this method, we aimed to recruit a range of participants in each sample for each stage of the research. For views about the organisation and service structure, for example, we interviewed front-line professionals, commissioners and service

managers across health and social care organisations and for views about outcomes people with LTNCs wanted to achieve, we aimed to hear the views of people representing different LTNCs, different condition trajectories and different points in that trajectory.

To counter interviewer bias, three researchers undertook interviews and reviewed each other’s interview transcripts at different points of the research. We also undertook some joint interviews so that feedback could be given on process and technique.

Focus groups

Focus groups use group discussion to generate qualitative data around a focused set of topics79_{and, as}

with the in-depth interviews described above, they can be used not only to hear people’s opinions but also to understand why people hold these opinions.75_{Although focus groups can be used to explore dynamics}

of the group,80_{for the purposes of this research we were only interested in understanding the views}

people had. Focus groups were thus used to gather views of staff who had used the checklist as part of their practice.

In stage 3, we offered staff in the NRTs the opportunity to take part in an individual interview or in a focus group with their colleagues. The topics covered in the individual interviews and focus group interviews were similar, but focus group interviews gave staff the opportunity to discuss issues as a team. We offered these choices for several reasons. First, focus groups would improve efficiency, reducing the time needed overall for staff to take part in interviews (i.e. 2 hours in all, rather than several interviews of approximately 1 hour each). Second, as this research addresses the feasibility of using the checklist in practice, a focus group provided the opportunity for staff to share experiences and learn from each other’s experiences. However, we also offered a choice of individual interviews so that NRT staff could express divergent views away from colleagues, if this is what they preferred.

One of the methodological concerns associated with focus group interviews is that divergent voices may not be heard in group discussion. To address this, the groups were facilitated by two experienced

researchers who directed questions to participants who had not spoken, so that they were drawn into the discussion, and positively promoted discussion about views that were divergent from that expressed by the majority of participants.

Field notes

Field notes, an accepted approach in qualitative research to provide additional information to aid

understanding of participants’views, were made after interviews and focus groups, where appropriate, to record contextual information. For example, a person may express concern about leaving their home. For example, when a participant expressed concern about the safety of going out of their home, the researcher might makefield notes about the participant's neighbourhood. Notes were also taken during meetings held with teams throughout the research process. Though these data have not been used to direct analysis, the information was used to provide contextual information and prompts for future interviews.

METHODS

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Documentary analysis

Analysis of documents is widely used in social research81_{and also in health research}75_{and can draw}

on many documentary forms, including official demographic statistics and government department documents.74_{In this research, we wanted to learn about the local structures and processes for integrated}

service provision, the wider context in which these were based and to understand approaches to outcome assessment in services for people with LTNCs. Documentary analysis was thus well suited to this study. Documentary accounts can be useful data sources, but as all documents are based on social constructions and judgements, it is important to be alert for inaccuracies and biases throughout the research process.75

Documents from a variety of sources were triangulated to limit this and these were then triangulated, where appropriate, with staff interview data.

Non-participant observation of strategy meetings

Non-participant observation is a classic method that has been used extensively and is particularly useful for organisational analysis and evaluation.75_{It comprises observation of behaviour, actions, activities and}

interactions to inform understanding of complex situations and interactions.75_{As indicated above,}

the complexity of the systems being researched for this study made this approach potentially useful. Furthermore, non-participant observation is, by its nature, context specific.77_{Given that we were interested}

in understanding how local decisions were made around integration/co-ordination of services as well as who was involved in this decision-making, non-participant observation of meetings that focussed on integrating/co-ordinating services for people with LTNCs could provide interesting insight into how decisions about these issues were addressed.

Approach to analysis

We used the framework approach to data management and analysis. This is typically used in applied policy research where there are specific objectives or information needs. As such, frameworks can be data driven or led by a priori issues, or a mix of both. The approach also facilitates systematic data management and allows audit trails of the data management process.

Qualitative data are managed in a theme-by-case matrix, known as an‘analytical framework’.82_{There are}

four stages of data management. First, researchers familiarise themselves with the data, and identify themes and key issues. Based on the identified themes and any other a priori issues, an index of themes is constructed, resulting in the analytical framework. Visually, this looks like a matrix or chart, with cases as rows and themes as columns. Data are then indexed according to which theme(s) in the framework they relate to. Finally, the indexed data from each case (e.g. participant, focus group) is summarised onto the chart under the relevant theme(s) (known as‘charting’).

Where appropriate, we triangulated different sources of data. For example, in stage 1, we used both interview and documentary evidence to help understand organisational and wider contextual issues. When we took interviewfield notes, we also used these to help inform analysis of data from that interview.