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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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Data Collection: Focus groups were chosen in order to get input from all those involved with the ICP from different job roles. They have been identified as an effective technique for exploring the attitudes and needs of staff (Denning and Verschelden 1993) and allowed for collaborative discussion between health care professionals in order to refine ideas. They highlight the respondents’ attitudes, priorities, language and framework of understanding (Kitzinger 1995), all of which are of interest in this evaluation and can provide essential knowledge for CMOC.

The interaction between participants also allows them to generate and answer their own questions and share common experiences, which generates deeper understanding (Kitzinger 1995). Furthermore they allow essential interaction between the participants and the researcher allowing me to pose follow up questions or probe a particular topic of interest more deeply. Thus the focus group allowed for the role of the participants in producing interaction and the role of the researcher in guiding this interaction (Morgan 1996). FG1 provided essential knowledge to understand what exactly it is about the ICP that makes a difference to health care professionals and patients, in order to refine the initial programme theory. The information gained from the first focus group allowed the development of SSM maps which detail essential transformations within the pathway and can also be understood in terms of CMOC (discussed further in data analysis). FG3 was used to discuss and refine the studies final CMOC.

The focus groups have contributed to CQI in the locality; informing decisions on

documentation and data recording (for more information please see Chapter 6:

Preference discussions and the locality advance care plan, p.199).

Data Analysis: FG1 and FG3 were used to stimulate thoughts about how the ICP worked and refine final CMOCs, respectively. FG2 used knowledge from integration into the locality and findings from FG1 to create SSM maps - visual tools to collect and make sense of the data. It formulates carefully built models of systems which are used to represent and analyse a real world situation. The maps created were set against perceptions of the real world by a process of comparison which initiated debate between FG2 participants (Checkland and Scholes 1992).

The epistemology of SSM is similar to that of realism in that the building of models accounts for the phenomenon being examined and these models are hypothetical descriptions which reveal underlying mechanisms of reality which can only be known by constructing ideas about them (Blaikie 2007). It was recognised that not everyone understands mechanisms in a realist sense, however most people can relate to inputs, outputs, transformations and environmental factors. Therefore SSM maps were used as a form of CMOC as they allowed the health care professionals and key organisation workers in FG2 to talk in terms of CMOC, using terms such as ‘transformations’ (to refer to underlying mechanisms) which occur through an ‘input’ (mechanisms and resources), and produce an ‘output’ (reasoning and outcomes). The transformation is affected by ‘weltanschauung’ meaning worldwide view (context), ‘owners’ referring to those who can stop something from happening in practice (context) and environmental constraints (context). Furthermore, the visual presentation of SSM maps enabled FG2 discussions to be framed and generate further comments in a way that CMOC may not have; participants could see several factors in one domain, for example, several inputs, and discuss which was the most important for a particular transformation, such as ACP. This meant that FG2 participants evaluated several CMOC initially generated by the ICP founder and myself and generated their own CMOC through discussions initially triggered by the maps. This model helped highlight the contexts and mechanisms that are key to producing effective outcomes and allowed the research project to reflect practitioners’ combined organisational memory, experience and wisdom.

SSM maps provided participants with an opportunity to think about their practice in a different way which enabled the surfacing of prior assumptions and implicit considerations, for example, a proactive GP is necessary to engage in early preference discussions.

4. Interviews with palliative care pati ents and bereaved relatives (contributes to programme theory 3 and 5) Recruitment: Patients and bereaved relatives were identified by GPs in Practice D.

All bereaved relatives were four months post bereavement; this was an inclusion criterion of the study. Once a potential participant was identified by a GP, they were discussed with the founder of the ICP (retired GP with an interest in palliative care) to ensure that they were suitable and psychologically stable to participate in the study. Once it was agreed that the patient or bereaved relative was suitable they were sent an invitation letter (Appendix 18 for patients and appendix 19 for bereaved relatives), information sheet (Appendix 20 for patients and 21 for bereaved relatives) and consent form (Appendix 22 for patients and 23 for bereaved relatives) with a stamped addressed envelope, addressed to me at Northumbria University. Family members of palliative care patients were also provided with an information sheet (Appendix 20) and consent form (Appendix 24) if they wished to participate. The consent form for patients and bereaved relatives asked for the provision of a contact telephone number, so once the consent form was received I could telephone the participant and organise a convenient time for interview. All interviews were recorded in the participants’ homes. Researcher safety measures were put in place - I would inform my supervisors when I was scheduled to visit a participant’s house and then I would telephone my supervisors once the interview had finished and I had left the participant’s home. Four bereaved relatives and three palliative care patients were interviewed; all participants were given pseudonyms.

Data Collection: Semi-structured interviews were conducted with palliative care patients, their families and friends and bereaved families. Interviews can overcome the poor response rates of a questionnaire survey (Austin 1981) and are appropriate for exploration of participants’ attitudes, values, beliefs and motives (Richardson, Dohrenwend et al. 1965, Smith 1975), which are essential in the formulation of CMOC. Interviews provide the opportunity to evaluate the validity of the participant’s answers through observation of non-verbal cues (Gordon 1975); this is particularly useful when discussing sensitive issues such as palliative and end-oflife care. Semi-structured interviews were used because they provide comparative data whilst allowing for follow up questioning that is specific to the individual (Barriball and While 1994). Furthermore, they are appropriate for the exploration of the perceptions and opinions of participants regarding complex and sensitive issues (Barriball and While 1994). They also enable the researcher to probe for more information and clarification of answers (Barriball and While 1994). This provided rich, in depth, qualitative data about the ICP and bereaved relatives’ and patients’ experiences of it, whether it was working for patients and their families, and if it contributes/contributed to a good death. Thus the interviews allowed for initial programme theory testing by asking about personal experiences of the ICP.

Data Analysis: Interview transcripts were analysed thematically (Braun and Clarke 2006). Thematic analysis is an accessible and theoretically-flexible approach used in the analysis of qualitative data. The method allows the researcher to identify, analyse, and report patterns (themes) within the data. It organises and describes the data set in (rich) detail. Additionally, thematic analysis can be used to interpret aspects of the research topic (Boyatzis 1998).

5. GP consultation recordings with palliative care patients (contributes to programme theory 4) Recruitment: Patients were recruited by GPs at GP practice E. Patients were approached verbally by GPs and if they showed an interest were given the invitation letter (Appendix 25), information sheet (Appendix 26) and consent form (Appendix 27). They then filled this in and returned it to the GP who provided them with the MBSS. The participant filled this in and returned it to the GP. The GPs were also provided with invitation letters (Appendix 28), information sheets (Appendix 29) and consent forms (Appendix 30) about the study as they too were participating by being audio recorded and completing the questionnaire. The GP completed their consent form and the MBSS and all forms were posted to me at Northumbria University. It is acknowledged that palliative care conversations take place over time, therefore GPs had the opportunity to record up to 3 consultations with one patient.

Data Collection: Both a palliative diagnosis or information about palliative care can be classed as distressing, health threatening information which is difficult for the doctor to deliver, and for the patient to receive (Buckman 1984, Ptacek and Eberhardt 1996, Ptacek and Ptacek 2001). The literature suggests conversations about death occur infrequently and that this may be due to professionals not feeling at ease with broaching the subject (The SUPPORT Principal Investigators 1995, Hoffman, Wenger et al. 1997, National End of Life Programme 2011). It is proposed that in such health related risk situations individuals utilise distinctive attentional processing styles which allows them to be classified as a monitor or blunter (Miller 1995). When faced with a health related risk, monitors generally seek information, magnify disease related cues and display greater dissatisfaction about the amount of information provided. Alternatively, blunters psychologically distract themselves from health related risk information and desire less knowledge.

People can be classified as (high or low) monitors and (high or low) blunters using the MBSS (Appendix 31). The proposed use of coping style classification in this project was to investigate whether matched coping styles between patients and health care professionals offer any explanatory potential for outcomes achieved. For example, if a monitor health care professional and a monitor patient (classified through use of the MBSS) (Miller 1995) have a consultation, it is hypothesised their conversation about palliative care and death will be facilitated by their inherent coping strategy. In this study GPs and patients are classified as high or low monitors and blunters using the MBSS; following this, recordings of consultations about palliative care were made. This section of data collection sought to find if matched coping style resulted in a better outcome (testing programme theory 5).

Data Analysis: The MBSS data was analysed by classifying individuals as high or low monitors or blunters. The audio recording of the consultation was transcribed and examples of high and low monitoring between GP and patient were sought. Due to a growing interest in medical stressors and coping style, an instrument was developed specifically to assess coping style when faced with medical threat, the Threatening Medical Situations Inventory (TMSI) (van Zuuren and Wolfs 1991, van Zurren and Hanewald 1993, van Zurren 1994). The TMSI describes four health threatening situations and has satisfactory reliability and validity (van Zurren and Hanewald 1993, van Zuuren, De Groot et al. 1996). However, the use of this scale was not employed in this study. The reasons for not using this scale are due to its relation to health care, and the hypothetical situations that are posed. One question asks the participant to “Imagine you suffer from headaches and dizziness for some period of time already. You visit your doctor. He or she tells you things don’t look too well and refers you to a specialist for a rather trying medical examination”. This type of hypothetical situation may be very close to a palliative care patient’s actual experience and may cause distress.

There is substantial academic as well as clinical debate about whether trait measurement is an adequate way of understanding peoples’ behaviours and attitudes. This focuses on states versus traits. Traits are stable, enduring characteristics that are consistent across situations, for example conscientiousness.

States are transient experiences that are subject to change, such as emotional states or generosity. Difficulties in the differences between traits and states become apparent when focusing on anxiety. Cattell (1966) emphasised the importance of distinguishing between anxiety as an emotional state and individual differences in anxiety as a personality trait. Correspondence with the MBSS creator Dr. Suzanne Miller confirmed that Monitoring and Blunting are traits (Appendix 32). Dr. Miller


“Yes it is a trait. They (monitors and blunters) don’t change how they respond to the items on the questionnaire, but their (coping) strategies may change over time as the situation changes. Also some people are in the middle (a subset, perhaps a quarter) so that they are more influenced by changes in the situation” Thus if a person is classified as a monitor they are likely to remain a monitor despite changing situations. Therefore a person would be a monitor three weeks after receiving their terminal diagnosis and three months after receiving it; the trait is stable over time. However, coping strategies can change over time, meaning that denial could be primarily used before acceptance. Yet some people are influenced more readily by situational factors than others.

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