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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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The operationalisation of the data collection into realist evaluation The five programme theories stated earlier were refined using the five data collection strands, although there was not one specific data strand for one specific programme theory. Outcomes were often investigated using GP practice data. These were retrieved and analysed early in the project time line in order to provide an engaging anchor for focus group discussions and to then help refine each programme theory as the project progressed. For example, information from FG1 refined the programme theories stated above (pg.88), which were tested in FG2 (using SSM maps to help health care professionals make sense of the ideas presented). The interviews with bereaved relatives and patients were conducted using an interview schedule which was approved by the NHS REC and could thus not be amended in response to theory development. Thus, programme theories could not be refined in between data collection from individual patients/bereaved relatives, as this would mean asking very different questions. Similarly, the questionnaire was a standardized questionnaire which was approved by the NHS REC and could not be changed, and the consultation recordings were conducted by GPs thus giving me no opportunities for input. Furthermore, these consultation recordings were meant to be a representation of a true palliative care consultation and therefore asking the GP to ask specific questions would not have been appropriate.

The multiplicity of data collection strands that could work in conjunction with one another was designed to allow for an in-depth investigation of all possible mechanisms. Thus if a question was raised by one data collection strand, the answer would either be found in other strands, in informal discussions with practitioners during field visits, in focus groups, in PCQV or in discussion with the ICP founder.

In conjunction, all these (formal and informal) interactions with the data were used to refine and/or confirm programme theories as data was analysed. The complex data collection strategy also mitigated against the constraints of the requirement for ethics (including questionnaires and fixed interview schedules), so that theories could be developed and tested across datasets.

The inclusion of the ICP founder as a supervisor in the team and attendance at locality PCQV acted as a further safeguard against the limitations of fixed data collection strategies. They meant that candidate explanatory theories were made explicit from early on, and refined on an informal basis as I familiarised myself with the field and discussed any confirming or disconfirming data finding with the founder. This process was not considered part of the formal data collection (as it might have been in other realist projects), but rather used for its theory refinement potential. This was because the ongoing involvement of the ICP founder enabled co-production of sense making that was grounded in practice experience and instrumental to the theory refinement process. Working in partnership, the founder was not a research participant but an invaluable source of knowledge that ensured greater practice validity of the findings. The focus groups, for which the schedule had been left open from the outset, came in addition to that. This was an iterative relationship between theory development and refinement and data analysis which is core to realist sense making processes.

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refine programme theories (see Figure 2). If the findings from one data collection strand contradicted an initial programme theory, this theory was refined to further understand this. There was never an instance where two data sets completely contradicted one another, as there was always explanatory potential in all data strands. Thus, where it initially seemed that data strands showed different results, when combined they created a stronger, refined programme theory.

This concludes the description of the data collection framework. Table 2 highlights the type and number of participants in each data collection activity.

Table 2: The type and number of participants in each data strand

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The data collection activities include interviews and consultation recordings with palliative care patients and bereaved relatives. The analysis from the interviews and consultation recordings are used throughout the findings chapters (Chapters 4, 5, 6, 7, and 8) intermittently, as all data is presented cohesively in order to refine the programme theories. Hence, a table is now provided in order to introduce the palliative care patients and bereaved relatives (Table 3).

Table 3: A table to introduce the palliative care patients and bereaved relatives who participated in the study

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Doris (and her son Richard) Palliative care patient Interview Janet (and her daughter Jill) Palliative care patient Interview Michael (and his wife Barbara) Palliative care patient Interview

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Ethical approval Ethical approval was granted from the School of Health, Education and Community studies on 28/09/2011 (Appendix 33). Following this the NHS local ethics committee approved the study (REC reference number: 11/NE/0318) on 13/12/2011 (Appendix 34). Research & Development approval was gained from four different trusts, and relevant voluntary organisations and the local council were informed about the research.

Chapter Summary This chapter has situated the research in a philosophical and methodological context that will allow the complexities of the ICP to be acknowledged throughout the evaluation. Realism does not aim to eradicate confounding variables but embraces them in the complex social nature of reality. The research question has been specified which has generated specific, testable programme theories. Finally, a data collection framework has been created in order to generate data that can test the programme theories and that will produce the most informative findings.

Findings chapters The findings are presented in five distinct chapters matching the programme


 Embeddedness of the Integrated Care Pathway as a new initiative.

 Identifying palliative care patients and registering them appropriately.

 Preference discussions and the locality advance care plan.

 Facilitating difficult conversations in palliative care.

 Facilitating a home death.

Although the chapters are presented separately, they do relate to one another. Many discuss the same tools or concepts but in different aspects. For example, the chapters ‘Facilitating difficult conversations in palliative care’ and ‘Facilitating a home death’ both include comments around ACP. However, in each I refer to and use ACP in a different way to provide explanations about crucial aspects of the ICP.

Understanding how the chapters relate to one another and why this is significant will be discussed in depth in the discussion.

The chapters are ordered chronologically in terms of the patient’s palliative care journey. The first findings chapter (Chapter 4, p.117) concentrates on the embeddedness of the ICP, as for the patient to receive the ICP it must first be embedded into the GP practice. The chapter explores if and how the service has been adopted and used within the locality and to what extent. This includes consideration of variations in use of the ICP between practices. Chapter 5 (p. 163) moves on to discover CMOCs related to the palliative care register. Issues with noncancer patients and the palliative care register are explored and understood over time in relation to practitioners’ self-efficacy. Chapter 6 (p.199) concerns preference discussions and the locality advance care plan, specifically it highlights the importance of markers for initiating preference discussions; the role of false hope;

time constraints; and the MCA. The final CMOC in this chapter explores the CQI element of this study, demonstrating how a change from the locality advance care plan to the advance statement from Deciding Right (NHS North East 2012) occurred. Chapter 7 (p.231) focuses on how ACP takes place in practice and explores the role of behavioural traits in the consultation. Finally, Chapter 8 (p.262) explores how a home death is facilitated in the locality with a focus on open communication strategies both at home and in the care home.

The key domains (chapters) emerged from the data analysis and were used as a framework to refine the programme theories and to answer the subsidiary questions.

This is explicitly explored at the end of each chapter.

Chapter 4: Embeddedness of the Integrated Care Pathway as a new

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This chapter will explore a CMOC related to innovation diffusion, or ‘embeddedness’. The more the ICP is used by the locality GP practices, the more confidence they build in using the ICP interventions, the higher the probability that it will not be considered as ‘new’ by the staff anymore and thus transform into routine practice; it will become embedded. Embeddedness is therefore considered as an intermediate outcome. Alternatively, the enthusiasm about the ICP could diminish, resulting in less use of the ICPs interventions (Pawson 2013). This chapter considers how the locality GP practices have used interventions over time, and compares GP practices to identify and understand if and why the ICP has embedded to different levels in the fourteen GP practices from the locality.

Initial questions asked of the data The programme theory and subsidiary questions that this chapter focuses on were first stated in the methodology chapter and are stated below.

Programme theory 1: The number of people who die in their chosen location (outcome) will depend on the GP practice (context) they are registered with and how embedded the ICP is, as indicated by the number of interventions used per patient (outcome). Thus, this is a programme theory about the process of implementation, considering implementation as an intermediary outcome.

- Does the use of more interventions result in better outcomes?

- Do CQI initiatives increase intervention use?

What characteristics do ‘high performing’ GP practices have?

Four CMOCs are presented below that relate to embeddedness. CMOC1 explains how the introduction of the ICP changed the capacity and capability to provide palliative care in the locality and what outcomes this resulted in. CMOC2 describes how the ICP interventions have been used within the locality, whilst CMOC3 indicates which practices have adopted the ICP more proficiently and provides an explanation of why some practices are ‘high performers’.

CMOC1 – Integrated Care Pathway intervention use and preferred place of death Outcomes: Intervention use predicts presumed preferred place of death The relationship between the number of ICP interventions administered per patient and the number of patients who achieved their presumed preferred place of death was investigated using a Pearson product moment correlation co-efficient, executed on MIQUEST data. The presumed preferred place of death refers to the patient’s own home, care home or a palliative care unit; deaths in these locations require planning and therefore are likely to be the patient’s preferred place. This relationship was investigated to test the informal hypothesis that the more interventions that are used per patient, the more likely they are to die in their presumed preferred place of death, which is at home, in their care home or in a palliative care unit. This correlation showed that the number of ICP interventions administered per patient and the number of patients who achieved their presumed preferred place of death had a strong positive correlation (r = 0.54, n = 14, p.05).

The least squares regression line (line of best fit) in Figure 3 also displays this relationship.

Figure 3: A correlation between the number of ICP interventions administered per patient and the number of patients who achieved their presumed preferred place of death A multiple regression was used to assess the ability of the ratio of interventions administered to patients who died to predict presumed preferred place of death.

Preliminary analyses were conducted to ensure no violation of the assumptions of normality, linearity, multicollinearity and homoscedasticity. The model was significant (F(1,12) = 4.87, p.05). The total variance explained by the model as a whole was 22.9% (Adjusted R2 = 0.229). Adjusted R2 was used due to the small sample size (fourteen practices). This means that the ratio of interventions used per patient who died accounts for 22.9% of the variance in achieving a death in the presumed preferred place. This means that the ratio of interventions used per patient is a good predictor of presumed preferred place of death. Thus this suggests that the ICP (and the interventions it advocates) are leading to good deaths for patients, when used appropriately, at least in terms of place of death. Thus the ICP ‘works’.

Mechanism - The ICP and increasing perceived capability and capacity The ICP, in providing newly commissioned services, interventions and a planned pathway for palliative care patients (resources) provided the health care professionals in the locality with greater capacity and better capability to provide palliative care. Education and information about palliative and end-of life care for health care professionals (through Quality Improvement Skills for Primary Care days, Practice Based Commissioning Group, PCQV and PCP) and financial incentives through the formulation of Locally Enhanced Schemes (LES) for the ICP (palliative care registration and advance care plans) also supported the provision of this care (resources). The introduction of these new resources altered the reasoning of health care professionals as they now had a perceived improved ability and capacity to provide palliative care in the community (reasoning). Thus health care professionals working within the locality by using the ICP were able to provide high quality palliative and end-of-life care that could be patient centred and preference based.

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