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The second phase of Inquiry One was for the CIG to collectively develop our knowledge of rehabilitative palliative care. As the action research progressed, the CIG agreed that a focus on the theory of organisational change was needed. This is reported here as it relates to the CIG developing knowledge.

4.3.1 Introduction

An initial phase of co-operative inquiry is for the group to come together to examine an area of mutual interest (Heron & Reason, 2006) and so the first task for the CIG was to develop a shared understanding of what rehabilitation in palliative care meant and then assess its relevance in this setting. However, there were some concerns from E2 and A3 that the group was not attending to the research aspect of action research and was instead focusing on action. It was therefore agreed, at meeting three, that the CIG also needed to develop knowledge regarding organisational change theory.

4.3.2 Data collection and analysis

4.3.2.1 Rehabilitative palliative care

To ensure the CIG had a mutual understanding of rehabilitation in palliative care, working in pairs, we considered four questions written on individual flipcharts and then wrote our response on the flipchart paper (29/06/15). After considering one question we moved on to the next flipchart question and wrote our response under those who had considered the question before us – a snowball technique. The handwritten flipcharts

92 were then transcribed by me and the responses from the CIG are shown in Table 6. A similar exercise was undertaken with the PAG (07/08/15).

Table 6: CIG and PAG responses to rehabilitation and palliative care questions

Question CIG response (29/06/15) What does the

term “palliative rehabilitation” mean?

Not dying in hospice, dying at home

Allowing patients to take control at end of life – quality of life Allowing people to live well until they die – under their own terms

Active participation in meaningful activities to enhance quality of life

Small individualised realistic goals Patient – centred care

Holistic care – emotional, spiritual and physical Not giving up on the patient = dying

Not enhancing the sick role

Patient Advisory Group response (07/08/15) Keep people active, mobile and free from pain Positive attitude

Skills to manage your condition Not just physical support

Lack of understanding of the term palliative - terms are contradictory

Rehabilitation sounds positive and dynamic. CIG response (29/06/15) What is “palliative rehabilitation” not? Curative Compulsory Unrealistic Really intense

Clinician-led – it involves patients, carers and families Enforced on a patient

93 Not necessarily about increasing function, can be adjusting & accepting

Clinicians taking over Dehumanizing About physio Disempowering What would a patient or family member think or understand by the term [palliative] rehabilitation?

Fix it/ Cure it/ Prolong life Gym/exercise

Lifestyle changes to enhance longevity “Inappropriate”

“Physios do rehab” Rehabilitation = walking

Helping people achieve important improvements and goals Making people feel more ‘normal’/independent

Make patient feel empowered/important – it’s not just dying No idea – what does it mean?

Intimidated by the medical profession, feel can’t ask/challenge. What other words

or phrases could be use instead of “palliative rehabilitation”? “Live well” Enabling Patient-centred goals Promoting independence Supporting appropriately Not just medical care Maximise abilities

Look after whole person not the disease

Control – encourage to take control/allowed to be in charge Functional approach

Empowerment Promoting resilience

94 The results from the discussion about palliative rehabilitation with the CIG and the PAG were used to inform what the CIG needed to do to gain conceptual clarity, so it was part of the concurrent analysis.

The CIG wanted to assure itself that there was some evidence to support introducing a rehabilitative approach in this setting. Two organisational documents were analysed to determine this: Minimum Data Set (MDS) and an internal audit of the Integrated Palliative Outcome Scale (IPOS). The National Council for Palliative Care (NCPC) collated the MDS annually from hospices, and reports for 2013/14 and 2014/15 for the in-patient unit (IPU) at this Hospice were collected from the Hospice’s records and reviewed by the CIG. The MDS was used to understand the profile of patients being admitted to the in-patient unit in a year, e.g. age, diagnosis, length of stay, outcome from admission, number of deaths etc. (Appendix 10).

IPOS is a component of the Outcome, Assessment and Complexity Collaboration (OACC), an internationally validated tool for measuring patient outcomes launched in 2013. It was introduced to the Hospice’s in-patient unit in 2015 and used to assess the degree to which the team had addressed the concerns of patients by asking them to identify their main issues on admission, and then repeating this three to five days later, and again upon discharge. As part of an audit, in June 2015, the responses from 30 patients were collected by IPU nurses, collated by one of the junior doctors and presented at an Audit feedback meeting. Clinical CIG members collected hard copies of the audit presentation and photocopied it for the CIG to consider (Appendix 11). The information from the MDS and IPOS audit were considered by the CIG as part of the

95 concurrent analysis and were used to inform whether a rehabilitative approach was appropriate in this setting.

4.3.2.2 Organisational change

In response to the concern that the CIG had not considered organisational change theory, it was agreed that I would source an organisational change article for each CIG member to critique and present to the group at the next meeting. The CIG members’ notes on these articles were shared in the resource folder. In addition, I presented a case study of an organisational change project I had been involved in.

4.3.3 Findings

4.3.3.1 Rehabilitative Palliative Care

Through their experience and my reading, the clinical staff and I had some understanding ‘palliative rehabilitation’; the therapists were more conversant in it than others. The volunteers and non-clinical individuals had less knowledge but after some discussion a shared understanding of palliative rehabilitation was achieved which was that it was an intervention that was driven by the patient goals and was not simply about improving functional ability, although this was an aspect of it. Shortly after the first CIG meeting a document, endorsed by Hospice UK, “Rehabilitative Palliative Care: Enabling people to live fully until they die” (Tiberini & Richardson, 2015) was launched. Whilst this was based on ‘palliative rehabilitation’ the CIG felt that RPC placed more emphasis on the role of the multidisciplinary hospice team in providing a culture of enablement for patients to achieve their priorities rather than therapy-led interventions. We thought that this more clearly recognised the roles that volunteers, non-clinical staff and lay people could play. It was also perceived to have more

96 emphasis on participating in meaningful activities such as socialising and eating and enjoying food rather than a more interventionist activities. We concluded that RPC was congruent with the CIG’s original understanding of palliative rehabilitation and a concept that resonated with the aims of the research and so was the term adopted.

When consulted about it, the PAG also responded positively to the concept of RPC. One member said she felt reassured that, “there was not going to be a strong emphasis on exercise and activity, but more emphasis on small goals that would enable people to feel better” (JM: PAG 07/08/15). Another said that his family were constantly trying to “wrap him up in cotton wool” (DM: PAG, 15/10/15) which made dealing with his illness even more difficult to cope with. He said he hoped that adopting this approach and involving families would encourage them to be more supportive.

Using the data from the MDS and the IPOS audit, the CIG needed to assess whether RPC was appropriate for this setting. Based upon the clinical staff’s experience and knowledge, the CIG used the MDS data to make some assumptions about which patients might be most amenable to this approach, e.g. according to the MDS, approximately 48% of patients returned home after an in-patient admission. It was important for these patients to have the same levels of mobility/independence when they went home as when they arrived in the Hospice. The MDS also showed there was a steady increase in admissions for patients with heart failure and respiratory conditions. These illnesses often had acute exacerbations followed by some improvement (Figure 3b) and we felt that a rehabilitative approach might benefit both these groups of patients to gain a degree of functionality after an acute episode.

97 According to the IPOS audit of 30 in-patients, mobility and weakness scored quite highly and did not decrease very much during patients’ admissions. This suggested that the current focus of in-patient care was not sufficiently addressing these issues. The CIG felt a rehabilitative approach could make a positive contribution to this.

4.3.3.2 Organisational change

The CIG meeting focussing on organisational change took place on 1 October 2015 and seven journal articles were discussed. The key findings were that:

• Resistance to change should not be demonised and that conflict should be celebrated and used as an impetus for change (R. Thomas & Hardy, 2011)

• Managers’ engagement with change was often superficial and nurse leaders’ identities were affected during organisational change (Salmela, Eriksson, & Fagerström, 2013)

• John Kotter’s model of organisational change was considered very relevant to this study as alignment could be seen with some of the activities we were planning (Kotter & Schlesinger, 2008)

• Poor management of change leaves organisations worse off than no change and that the psychological contract comes under duress during change (Burnes, 2003)

• Change needed to adopt an engineering and psychological approach, those contributing to or affected by the change must be involved and where possible rewarded and that change was operational; transformation was strategic (Graetz, 2006)

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• Barriers to effective organisational change were previously thought to be cost, workload and legislation, but contemporary thinking suggested it was management and culture (Hoag, Ritschard, & Cooper, 2002)

• Nurses would benefit from knowledge of change theory (Shanley, 2007).

The learning about organisational change was an important aspect of the study as it was used, as part of the concurrent analysis, by the CIG to inform plans throughout the remaining months of the research.

4.3.4 Conclusion

The CIG engaged at a conceptual level with the topic of rehabilitation in palliative care and, at a very early stage in the research process, grappled with a refreshed concept (described as rehabilitative palliative care) in a constructive and positive way and achieved consensus. This demonstrates some of the features of co-operative inquiry described in Chapter Three (Heron & Reason, 2001) and reflects authenticity in that the participants were prepared to review their position based on new information (Guba & Lincoln, 1994). This process also ensured that we had a mutual understanding of the subject matter and provided a foundation upon which to build our knowledge which would assist us in assessing whether RPC was relevant in this setting.

The CIG seemed to create a space that aligned with Habermas’ theory of a communicative space. Table 5 showed that its characteristics of solidarity, an ability to voice divergent views, legitimacy, authentic engagement and a democratic context could be evidenced by our interactions.

99 Having considered the information from the MDS and IPOS, we concluded that it would be appropriate to plan to implement a RPC approach to the Hospice’s in-patient unit. Through undertaking further action research cycles our knowledge of RPC developed and staff and volunteers were able to put this knowledge into practice in their day to day activities demonstrating Heron and Reason’s (2001) extended epistemology, and research in action (Lewin, 1948).

In addition to developing our own knowledge about organisational change and action research, the CIG participated in generating knowledge about how to integrate a rehabilitative approach into a hospice in-patient setting and therefore contributed to the evidence-base on this subject whilst implementing change. This reflects the key components of action research: democratic impulse, participatory in nature and contributing to social science and social change (Meyer, 2000). It also contributes to creating an evidence base for this work (Halkett, Ciccarelli, Keesing, & Aoun, 2010; Runacres, Gregory, & Ugalde, 2017).

4.4 Identify, plan and implement ways to integrate rehabilitative