Model for analysis

The analysis of the data transcribed from the interviews with DP users and their proxies was carried out using Framework Analysis (Ritchie, Spencer, et al. 2003). This methodology provides a flexible way to bring together information collected from the three groups of interviewees, by summarising information and facilitating the comparison between the three groups of users of DPs. The process of using Framework Analysis involves four phases:

familiarisation with the data collected and coding; summarising data by way of thematic charts; making use of these charts to identify possible patterns and associations; and from there deriving conclusions.

The familiarisation with data was greatly enhanced by re-listening to the digital recordings and transcribing the interviews. The majority of the interviews were transcribed by the researcher and the remaining transcripts were checked against the digital records of the interviews for accuracy. The fact that the same researcher conducted all interviews also greatly contributed to the familiarisation process.

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Based on the previous literature review and on the hypotheses, a thematic framework or index of themes was constructed and this was then used as the basis to code the transcripts (Miles & Huberman 1994). While there is always the risk that data may be forcibly fitted into this pre-existing structure, this more deductive approach allows for the analysis to be built on existing evidence and theory (Bradley et al. 2007). To accommodate for this risk, the index of themes was left very open with only a limited number of themes. The thematic framework thus retained sufficient flexibility so as to allow for modifications as the analysis progressed.

For example, it became clear early on in the process of conducting interviews that many interviewees had had previous experiences with LA-managed care. This was not only central to their experience with care and their understanding of what they valued in care, but could have also impacted their subsequent choices. Therefore a theme on “Circumstances of care”

was added to the thematic framework²⁸.

For the coding or labelling of the data (Ritchie, Spencer, et al. 2003), each sentence and paragraph was read and its content examined in order to understand “what is being said here?” and a code or label emerging from the data was assigned to blocks of text (phrases or paragraphs). Each assigned code would then be placed on the thematic index. As more transcripts were analysed, increasingly fewer new codes arose from the data. This reflected the theoretical saturation of the data (Guest et al. 2006) as new observations produced little additional variation. Already existing codes would be assigned instead. Each block of text could have overlapping codes, for example, in an excerpt referring to the choice of carer – coded “choice of who” – the interviewee could also be referring to something about the relational aspects of care – labelled “relational”.

In the process of coding, the labels were compared and when deemed adequate grouped together in wider categories, which in turn were then further compared to see whether other clusters of codes would emerge. Throughout the process, notes were taken not only on the definitions of certain codes, but also on the rationale for the clustering of codes into wider categories. As an example, interviewees referred to being able to share intimate stories and insights on their personal or family life with their carers and how they valued their carers not sharing this information outside their home. This was initially coded separately as

“Maintaining discretion”, but subsequently was clustered together with the code “Trust” that included until then only more literal references to confidence and trust (e.g. referring to

28 Subsequently this theme was merged with other themes to form the theme “Decision leading to DPs”

and for this reason the theme “Circumstances of care” is not presented in Table 4.1.

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situations such as entrusting the carer with the house keys or with finding a replacement carer). A note was thus inserted explaining that the code “trust” included also this sharing of personal information. While one or another code may have been merged or clustered, during the process of coding it was considered more advantageous at this stage to keep a larger and more detailed thematic index rather than a smaller set of codes. This approach reflected the fact that coding was an initial stage in the analysis process, but it also aimed to prevent that early merging or clustering of codes would forcibly condition the subsequent process of analytical interpretation of the data.

The process of coding was carried out with the software package MAXQDA. Once the transcripts and accompanying notes were uploaded, the use of software such as MAXQDA greatly facilitated the task of managing the data. It allowed, for example, for codes to be attributed to selected texts, for codes to be easily merged or divided (with accompanying notes) and then for excerpts to be retrieved according to codes and/or attributes of observations. The three types of DP users utilised in this study or any other attributes deemed interesting for analysis were also subsequently systematically explored in the data (e.g. living arrangement, health condition, proxy respondent, etc.). Figure 5.1 displays a screenshot of MAXQDA working environment depicting the various elements from MAXQDA signalled in green boxes, namely: the list of transcripts, the index of themes and codes, the retrieved coded texts (by code and/or attribute) and the selected full transcript with the codes assigned on the right-hand side.

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Figure 5.1 – Elements of MAXQDA working environment

Once the data had been coded, a thematic chart or matrix for themes was constructed with Microsoft Excel, as displayed in Figure 5.2 as an example. Each Excel spreadsheet corresponded to a thematic chart covering a number of themes, displayed in separate columns, with each row corresponding to an interview or observation with the main attributes of the individual depicted in the first cell. Each cell then synthesizes the information pertaining to each particular theme and individual. The cells may include expressions from interviewees (albeit not lengthy quotations) or notes to places in the transcripts that are considered important for detailing a particular point and could thus be important in subsequent analytical steps.

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Figure 5.2 – Example of excerpt of the thematic matrix “Feelings with carer” in Excel

Note: The term “Anonymised_ID_code” replaces the actual individual anonymous code that each user cell has, so as to protect the anonymity of interviewees in this screen shot.

The matrices and the headings correspond respectively to the themes and codes of the thematic index in some, but not all cases. As Ritchie, Spencer and O’Connor (2003, p.230ff) refer in their guidelines for Framework Analysis, this reflects the maturing of the analytical process as new themes and associations between themes emerge during the coding process and one begins to interpret the data. As an example of this process of analytical maturation, there were initially codes pertaining to the how interviewees described their current relationship with their carers (e.g. “friendship”, “professional”, “like family”, “trust”) and codes pertaining to relational dimensions in making choices (e.g. “burden on family”,

“neighbours”, “power”). As the analysis progressed, it became clear that the majority of codes such as “friendship” or “friendliness” captured the nuances of a wider heading concerned with “relationships”, while codes such as “burden on family” or “trust” were more akin to caring as a power relationship – a heading connected with the literature (Kittay 1999) (see Chapter 2). In another example, the thematic chart relating to experiences with care came to encompass not only codes referring to the identity of the carer (e.g. “choice over who”,

“continuity”) or the care process (e.g. “choice of what”, “knowledge of needs”, “flexibility”), but also a number of codes on how users reflected on the impact of DPs on themselves (e.g.

“assertive”, “self-aware”) captured by the heading “changing self”. The construction of the thematic matrices thus increasingly involved more abstract concepts and inductive theory-building analysis. The structure of the matrices and the headings for each are depicted in

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Table 5.1. Again, this was an iterative process as the contents of the headings were re-read, reflected upon and questioned as new associations between headings or new questions emerged.

Table 5.1 – Thematic charts and headings for analysis of qualitative data

Thematic matrices Headings

The subsequent analysis involved using the matrices to probe for patterns, associations and clusters with a view to develop explanatory accounts and find causal links. In the context of Framework Analysis, it is common at this stage to search for typologies (e.g. clusters of individuals) as part of the analytical process (Ritchie, Spencer, et al. 2003). In the case of the

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present study, however, a typology had been established ex-ante – i.e. the three types of DP users referred to before – and were thus used throughout the whole qualitative analysis.

Although a typology had been established ex-ante, other possible associations between the themes and attributes of the individuals were, nonetheless, explored in the data to examine whether certain factors had any effect on the findings. The possible associations explored were the following. As the interviews were expanded to include three LAs, rather than only one as initially planned, the patterns emerging from the data were analysed to check whether they reflected the clustering of observations among LAs. Some of the findings were checked for associations with particular attributes such as age, gender, living arrangements and other social support networks, characteristics of the carers such as their tenure, health condition of interviewees and type of interviewees (users themselves or proxies). For instance, the analysis explored whether individuals living alone or with limited contact with family or acquaintances had different types of relationships with their carers. This included not only comparing different types of relationships with the characteristics of users – using the matrices depicted above (see Figure 5.2) – but also analysing their narratives to have a better understanding of possible factors that could be associated with particular relationships. For example, this included checking whether users with closer relationships with carers felt lonelier or more disheartened. Similarly, the reciprocal exchanges observed in some caring relationships were compared with information about the tenure of the caring relationship with the paid carers retrieved from the interview transcripts. One issue in particular deserved careful consideration: the possible association between certain themes and the use of proxy respondents – an issue that will be more thoroughly discussed in section 6.4. While a wide range of factors were examined for possible explanatory effects on the findings, two could not be thoroughly analysed: income and care intensity as measured by the number of hours included in the care package. Both were deemed confidential and not provided by the LAs and the interviewees were not directly asked about the former. In addition, they often expressed less than full knowledge of the number of hours that their DPs entitled them to.

The purpose of the above described systematic exploration of possible associations between themes and certain attributes of interviewees was not only to identify commonalities and patterns, but also to explore the exceptions, the outliers and the diversity in the data. This is something which qualitative methods are particularly suited to account for (Lewis & Ritchie 2003). This process sought to strengthen (or rule out) possible explanations through the study of possible associations and exceptions. The fact that some factors had no explanatory effect could be equally salient to the analysis of the findings and thus the importance of

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exceptions as well as associations. The outcomes of this analytical process are detailed in the findings (Chapter 6).