Impacto medioambiental

As described in Chapter One (page 61), the models of adult palliative day-care operating across the United Kingdom are quite varied with there being social, medical and mixed models of care (Coop et al.1998, p. 164; Higginson et al. 2000, p. 279). Very early in the research process the day-hospices within the funding network were visited and through observation and discussions with APDC staff it became evident that the variability in models of care seen nationally was also reflected in the network.

1.

Negotiating access

Designing study e.g. initial interview

schedule

Ethics approval -1

2.

Data Collection with health professionals & Documentary analysis Recruitment

4.

Data collection with health professionals Confirmatory interviews

Ethics approval 2

Recruitment

3.

Data collection with patients and carers Recruitment-key informant

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These findings supported the arguments in favour of using the funding site, and all of its units as the actual location of the study (section 3.1.3 page 101-107).

This section on negotiating access describes the interactions between myself and the APDC units prior to the collection of any interview data. It shows the impact of these early observations and discusses the overall study design e.g. the recruitment methods used for patients and the use of documentary data.

4.5.1 Preliminary field work

In September of 2005 while still conducting literature reviews I attended an executive meeting and was introduced to members of the board of management of the various day-care units. I was briefly

introduced as a researcher from the university who would be assisting the network with research on understanding day-care. Some months later when my research was more informed by the literature, I contacted each day-care unit in the network and arranged a site visit and meeting with their APDC manager. I intended to use this meeting to inform the APDC managers of the likely direction of the study, and to learn about their care models. On my visit to the sites I had discussions with the manager on the specifics of the services they offered, their staffing levels and typical client profiles. In addition I also had a guided tour of the (APDC) units including treatment and administrative areas60. This tour gave me the opportunity to see how space was utilised at the respective units, and to do an early

60

In addition to the general tour, one full day (10 am-3 pm) of pre-research participant observation was spent at one of the APDC units. This was facilitated by one of the academic supervisors of the research. This day included attending morning case conference, interacting with and having discussions with patients, staff and volunteers, including having lunch.

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assessment regarding the availability of a quiet confidential area that could possibly be used during any data collection.

From these first visits I realised that the APDC units in the network did vary in their care-models and that they were suitable sites for conducting the research. After this I started to formulate my detailed research protocol (study population, sampling and data collection methods). I visited each unit on two more occasions to discuss the study design with the managers and to obtain their feedback and

suggestions. This process of engaging with the managers and having them participate in the study design was beneficial. Firstly, these meetings gave me the opportunity to further position myself as an objective researcher from the university and to establish and build a trusting relationship with the managers. This was an important means of allaying any fears regarding the APDC units being audited61. Secondly, by participating in the study design the managers were able to have a sense of ownership of the research process. Of note, the managers also identified naturally occurring data on access which all the units possessed, and gave advice on possible methods for effectively recruiting palliative patients. In fact, as will be discussed later, initial contact with participants was facilitated through the palliative day-care unit. This level of support from the respective day-care units was invaluable.

61

This research was conducted at a time when there was restructuring of the Primary Care Trust systems of the NHS. Though most of the units received their funding from private charitable contributions, there was much debate in the wider palliative care arena, as well as within the network, about the advent of a payment by result system which might affect any NHS contributions made to individual services.

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Finally, from these early visits it became evident that in order to understand the access processes to APDC, it would be necessary to interview a wider range of individuals from within the day units than had been suggested by the literature. Therefore, the study sample was expanded to include persons who may affect access by virtue of their sanctioning or interpretation of referral acceptance criteria e.g. board members and volunteers.

The final study design was approved by the individual units and the local research ethics committee. The ethical review process and details of the study design including interview schedules is given below in section 4.6.

4.6 The research process: Ethical review and interviewing methods