Study design

The study focuses on old-age users receiving care in their own homes, and specifically on those that chose to receive their PBs as cash (i.e. as a DP) to hire a PA or purchase care services from home care agencies themselves. The decision to concentrate on users of DPs is justified by the fact that these are the ones that come closest to the definition of users as consumers of care. Indeed they are allowed choice over a wider set of dimensions of care (see section 3.2.2). Of particular interest to the research question of this thesis is the fact that DP users have greater control over choice of from whom and when, how and what care to receive compared with users of LA-managed care. For example, unlike the latter, DP users are able to directly employ carers as their PAs – which is of direct relevance to the research question under analysis in this thesis. They are also not limited to the home care agencies that are under contract with the LA and may find less administrative barriers to change agencies when compared with users on LA-managed care (see section 6.1). DP users therefore come closer to the notion of users as consumers of care. This thesis does not cover those in institutional care since many of the user choice mechanisms are confined to publicly funded home care, and some of the most important issues of interest make more sense in that context, most notably the choice of carer. Furthermore, older people arguably face more barriers to exit providers in institutional rather than home care, for example due to their health condition or to geographical constraints (e.g. preference to remain close to relatives).

In line with the previously stated arguments in favour of using comparisons set forth by Bechhofer and Peterson (2000) and Lewis (2003), this study has a comparative component. It focuses on three groups of older people receiving DPs in their own homes, but who differ in the choices they have made in regard to the use of the DPs. The aim is to get a better understanding of the role played by the relational and co-production aspects of care. As alluded to above, the three groups comprise older users of DPs that have chosen to hire someone they previously knew (e.g. relative, friend, neighbour, previous agency carer); older users of DPs that have chosen to hire as a PA someone previously unknown to them; and older users of DPs that have purchased services from a home care agency (i.e. a formal provider organization). Each group is detailed below:

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• Users that hired a PA previously known to them – hereafter denominated as

“employer + relational” users or “relational” for short. The agreement over how and when care is provided can be seen as taking place within a familiar relationship. This group gets their “employer” denomination from being able to hire and manage their own carers and thus possibly having greater leeway in also shaping the other aspects of care received (linked to hypothesis 2). The

“relational” aspect refers to the fact that these users would have circumnavigated the uncertainty aspects of the experience good nature of care, or at least those related to the relational aspects, by hiring someone they previously knew and/or by possibly also having greater leeway to develop these same relational aspects of care (linked to hypothesis 1).

• Users that have used the DP to hire a previously unknown person as their PA – hereafter denominated as “employer” users. These users have become employers of their own carers, similarly to users of the first groups, and may have more leeway to determine what and how they receive care (hypothesis 2).

Although the experience good aspect of care is still present, both in terms of the relationship and how and when care is provided; they have the power to interview their PA – thus gathering more ex-ante information about the relational aspect of care – to change PA, or to build on a relationship with their PA (hypothesis 1). The agreement over how, and when, care is provided takes place within an employer/employee relationship.

• Users that have used the DP to contract the services of a formal care provider – hereafter denominated “purchaser” users. These users have become consumers of care, having to deal with the experience good nature of care in selecting the provider and having arguably less leeway to choose the identity of the carer. As they purchase care from an agency, they may have less chance to get prior knowledge over the relational aspect of care (hypothesis 1) and, according to hypothesis 2, more limited possibilities to determine how and when care is delivered. Agreement over how and when care is delivered is done within a consumer/provider relationship.

The rationale for employing this comparative design is the following: these three groups could potentially have contrasting experiences in choosing, negotiating and experiencing care in relation to the experience good nature of care and the above-stated hypotheses. Each of these three groups bears a different relationship to the potential advantages of choice described by the two hypotheses. Group 1 potentially benefits from (A) both prior

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acquaintance with the carer and ability to build on an existing rapport with the carer and (B) closer managerial control, as described by hypotheses 1 and 2 respectively. Group 2 potentially benefits from (B) but not (A). Group 3 is not able to benefit from either (A) or (B).

Groups 2 and 3 therefore overlap in not having prior acquaintance with the carer at the initial moment when making their choices. It is nonetheless possible that they too develop relationships with the carer over time and that these relationships come to impact their experience of care. Another salient overlap exists between groups. Both group 1 and 2 have agency over the choice of their carers; while presumably those in group 3 are more limited in this. This is salient to the first hypothesis, which states that choice over who provides care is important to users.

The use of typologies, including those defined ex-ante, is often the employed mean in qualitative research to establish associations and clusters in qualitative data (Spencer et al.

2003). The above described three groups, or typology of older DP users, were therefore used to explore patterns and links that contribute to a better understanding of the relational and co-production nature of care. The purpose is not to generalise about choices made by each group, but to draw inferences and to compare the relative importance of the roles played by the relational and co-production aspects of care when making choices in long-term care. This is salient both in terms of differences and similarities between the three groups of users. The comparative analysis between the three groups of users also serves to highlight particular themes or topics that might not seem so relevant in the context of the whole sample, but that attain a particular importance for one group and thus allow for a deeper understanding of choices regarding one specific group or issue. The use of typologies also enables the exploration of barriers or opportunities to develop relationships and receive good quality care that might be particular to any group of users.

The experience good nature of care and the focus of this study on the user’s experience with care received make it salient to consider not only the moment when decisions concerning care choices were made (e.g. hiring a PA or acquiring services from a formal provider). The development of a rapport with the carer – in case the carer was not a previous acquaintance – or the realisation of how the relationship with an acquaintance employed as a carer might have changed takes time to develop. The negotiation process of setting the care tasks, as well as how and when they should be provided, is also likely to be of an on-going nature, or at least to involve some adjustment particularly at the beginning of the care relationship.

Finally, views on experiences with care received are likely to be more accurately expressed after some time has elapsed in the care relationship, and after interviewees have had time to

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reflect on subsequent developments, whether positive or negative in the relationship. For example, if there is some degree of trial and error involved in choices and development of relationships, sufficient time needs to elapse for this to be accurately reflected on the narratives of users. It is therefore salient to investigate the impact of the experience good nature of care not only at the time of making the initial choice, but also in terms of how it evolved over time, thus following the example of other studies on the subject that analysed these temporal dynamics (Arksey & Baxter 2012; Rabiee 2013; Baxter & Glendinning 2013).

It would thus be possible to assess how after some months into the caring relationship, users perceive the relational aspects of care, the possibility of shaping other dimensions of choice, and their satisfaction. This needs to be balanced with the potential for recall bias when reflecting on the original choices, and thinking at the time these initial choices were made.

The study is divided into three stages:

Stage 1 (LA context): Selection of the LA and review of its market context, namely by consulting existing information (e.g. booklets, websites) and previous studies (if available) and conducting interviews with three to four LA officials including frontline staff as well as senior managers of adult social services.

Stage 2 (old-age user interviews): Sampling of older DP users and interviews with the three groups of older users of DP described above.

Stage 3 (comparative data analysis): Qualitative data analysis of the transcripts of interviews.

The first stage involves selecting the LA and conducting a mostly descriptive study on the context of care in this selected LA (see section 5.1.3, below). This includes not only describing the assessment and referral process, but also the “market context”. The former is important to determine over what dimensions of choice users had agency (see Table 2.1 in Chapter 2), the role played by care managers, how users first came into contact with providers or care options, what rules applied to the use of DPs (e.g. to what extent DP users pay the same fees for care provided by home care agencies as LA-managed care) and what support mechanisms are in place. The latter is important to gain insights on how the users performed their search and why they eventually settled for the choice they made (e.g. lack of competition may reduce the number and variability of care options). This is particularly relevant in light of possible imperfect information, as discussed in Chapter 2. The market context pertains also to the concept of choice set (Klein & Millar 1995) referred to in Chapter 2, i.e. to the possibilities

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from where to choose from. The information collected in this first stage is also important to understand potential opportunities or barriers to receive care and establish relationships, for example, regarding constraints imposed by home care agencies on their staff, or constraints on users’ choices, for example, those resulting from lack of information when searching for PAs. Available public information is to be supplemented with more detailed information on the above themes to be collected from three to four local officials including frontline staff as well as senior managers responsible for adult social services or staff from support agencies – hereupon collectively denominated “care managers”. These interviews aim to collect descriptive information about existing care providers, the needs assessment process of people needing care, the definition of the care package and the referral process to providers of care.

The second stage of the study mostly comprises sampling older DP users and gathering information from them on their decision-making process when selecting care and how this was impacted by the experience good nature of care, particularly (but not exclusively) its relational dimension and subsequent relationship development (see sections 5.1.4 and 5.1.5, below). In this second stage, data is collected through in-depth semi-structured interviews with DP users – see below sub-section on methods and data collection – on a number of themes. In particular, some of these themes are enumerated as follows: how they value the relational aspects of care – choice over who – and how their relationship with the carer has evolved; how they value choice over other dimensions of care (e.g. what, how and when) and how they negotiated these other dimensions with their carers; and how they perceived their experience with care received and what has influenced this experience.

The third stage of the study comprises the analysis of the qualitative data for the whole sample of DP users by using the Framework Analysis (Ritchie & Lewis 2003). This third stage of qualitative data analysis also introduces the comparative analysis between the three types of users (see section 5.2, below). The use of the above described typology aims to supplement and deepen the understanding of patterns and similarities arising across the sample of DP users as a whole. Based on the information gathered in the previous stages, comparisons focus on: a) how the experience good nature of care impacted users’ decisions; b) the differences in satisfaction with the care received derived from the possibility to choose the carer and influence how and when care is received; c) other factors that might have impacted the decision over how to spend the DP and the subsequent satisfaction with the care received.

The use of Framework Analysis provides a flexible way to bring together information collected from several groups of interviewees (e.g. the DP users), by summarising

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information and facilitating the comparison between the three subgroups of users of DPs (see section 5.2 below).